Eli's Page

2010-04-28T14:04:00.002-05:00

This has been an amazing week in our family!!

ELI IS FINISHED WITH CHEMOTHERAPY!!

On Sunday, we had our family over to watch Eli take his last pills and celebrate with us. I got a little weepy when I thought about the past years, everything he has been through, and that we are really finished.

Monday we pulled the boys out of school and went to the clinic to "Ring the bell". I realized when my dad said, "what?" that many folks did not know what I meant by this. At the oncology clinic there is a bell on the wall. No one plays with the bell...and everyone sees it each time you are there for treatment. To me, it was always a symbol of where we would be "oneday". When a child is finished with treatment he or she gets to ring the bell three times with the docs and nurses surrounding him and cheering him on. It was amazing!! I have included some pictures.

I am continuously reminded of how many people have been praying for our family and how many folks have helped us along this journey. I can only say THANK YOU!! We have come through the other side, and it feels great. The strength that God has given us has been tremendous...and much of that strength has come from all of you. Our prayers have been answered....God is sooo good. Our family is stronger as a result of this, and our faith has grown so much.

We will still have follow up appointments and what not, but no more meds!! Eli will not be officially "cured" until he is close to 18 years...he is considered to be in remission now, then in five years we will be cancer free, only 10 years later is he considered "cured".

Our big celebration will be on May 29 here on Daniel Island. I will be sending out evites and inviting Christ Church as a whole. If somehow you are reading this and you haven't "officially" gotten an invite, please know you are now invited. There have been so many of you helping and praying along the way that I am bound to miss a couple, so please accept my apology in advance, and please come celebrate with us!!!

Rejoicing,

Maria

2010-02-25T13:22:00.002-05:00

Well, we had to have one last "Hurrah" now didn't we?? After being out of the hospital for over 2 years, we were admitted for fever and low blood counts on Sunday evening. Eli's hemoglobin and platelets had come down quite a bit (something else that hasn't happened since he was on maintainance) which had me quite worried. On Monday we were thinking if the counts weren't up he would need a blood transfusion on Tuesday....well, on Tuesday everything had gone up!! Yea!! Unfortunately, we had to wait until 4pm and be fever free to be released. All morning, no fever. All afternoon, no fever. Then at 4pm....101 degrees!! Ugggggggg!! So we stayed.

Yesterday his counts continued to rebound, and the oncologist said with the blood counts he has now we could go home. We got his IVIG transfusion and left the hospital around 7:30pm...and as we were walking down the hallway going to the parking garage, Eli turns to me and says, "That was fun!"...AMAZING!! Sure, if you call being stuck in a tiny room for 72hours fun, that was a blast....but it sure does give me perspective. Yes, we were in the hospital, but he wasn't hurting or extrememly sick. It was an incovenience, and that is an amazing blessing!!

We did get to visit with all of the nurses that we haven't seen in such a long time. Funny, I used to be terrified of hospitals and now it feels like a homecoming. I enjoyed that part of it. Such an amazing place with incredibly dedicated people working with these kids!!

Eli's teachers and class were great. Miss Ann came and brought the most amazing balloons that everyone commented on and the class made a book for him and some signs from the school. He was delighted to look and them and talk about all of his friends. His "girlfriend" Adelyn even called and chatted while we were there!!

My parents really helped out this week. John has already begun work in Tampa and that means I am flying solo. My mom stayed with the boys during the evening and my wonderful friends here kept them in the afternoon. But it is great to be home.

Since his counts dropped so low, we will be working our way back up to the dose of chemo that he was on. This means that we should be able to enjoy high counts for a month or so while we get things straight. I don't think I mind this at all at this point.

Thanks for checking in. Hopefully things won't be this exciting again any time soon.

Maria

Again I am sooooo thankful for my amazing support system that I have here.

2010-02-05T14:36:00.002-05:00

I am still raising money for our LAST walk for Team in Training!! Please, please give!! http://pages.teamintraining.org/sc/myrtle10/elisteam

Thanks!!

2010-01-13T20:31:00.002-05:00

OK, I know that I have been super, super slack....but we have had lots going on around here (all good!!)

Christmas was a blast, and our trip to Orlando was amazing. I really think that I had forgotten what it was like to go on a long vacation like that with the boys. We have taken a weekend, here or there, but this was SOOO exciting for everyone. And we did it ALL!

We stayed at Give the Kids The World, a resort near Disney that is only for Make a Wish kids. We had a condo with two bedrooms and a full sized kitchen that was decked out for Christmas with 4 trees and all of the pictures on the walls were wrapped to look like presents. This place was special, and the staff was great. There is an ice cream parlor that is open daily from 8am-9:30pm, so we broke the Crowley world record and had ice cream EVERY DAY!! One day I even offered a banana split for breakfast, but the boys didn't want to give up the amazing waffles that they serve for breakfast!!

We had one day at SeaWorld were we got to get up close with the dolphins and fed them, two days at Universal and Islands of Adventure where we rode Men In Black 4 times and ET twice and Jake and John went on the "Hulk" roller coaster that look soo scary. Three days were for Disney, and we did all four parks. Epcot was surprisingly the favorite, but I think it was because we rode Test Track multiple times. The boys did the "pirate adventure" and got made up like pirates and we rode Pirates of the Carribean twice. And Eli got a one on one with the power rangers!! I have never seen that child without words, but he just grinned the entire time.

Every day we opened the park we were going to, and we didn't get home until 8 that night. The boys loved the magic light parade at Magic Kingdom and the lights on the castle were amazing. We ate out at all of the boys picks, from NBA Cafe, T-Rex, Rainforest Cafe, and Mythos in Universal. All very cool places!! I am attaching some pics, but I can only say that it really was a trip of a lifetime.....and the boys so deserved it after the past three years..especially Eli.

Now we are looking to April 25 and end of treatment....we are in 2010, a year that I have been so waiting for I cannot stand it. On Thursday Eli had his next to the last lumbar puncture and we were all chatting about it. Kinda reminiscing about how little Eli was when he first came in, really still a baby. And here he is a little boy now...wow. Our nurse practicioner, Lori, said that they can do his bone marrow biopsy in April when they do the last LP so he won't have to come in for another procedure. It really isn't required anymore for whatever reason, but she knows me and knows that I want that final reassurance before stopping the meds.

May 15 is our PARTY date, so everyone put it on the calendar. No details yet, but plan on it!!

On another exciting note, John has taken a job in Tampa, Florida, that will take our family away from Charleston. We have always known that our stay in Charleston would not be forever...but I do know that God's hand was in all of this. I could not have been placed in a better place or with better friends, caregivers,(and family) as I was during a most difficult time in our family's lives. Leaving before now would have been impossible for me, and now it is easier. The timing could not have been more perfect, as His always is. Now I have the fun task of getting the house ready to sell (please pray) and keeping it clean with my three swamp rats all day...uggg!!

Thanks for checking in...and for the prayers. Keep 'em coming, we are in the home stretch!!

Maria

Please also pray for those in Haiti. Dad has heard from the leadership there that there is near total devestation....

2009-12-24T14:12:00.002-05:00

Merry Christmas!!

Eli and our entire family are doing so well!! We went to the clinic for counts and he is where he needs to be, so no surprises. We are now preparing for both Christmas and Disney tomorrow, so I think we will be lucky if the EVER go to sleep tonight.

Eli was Joseph in the school Christmas play and did a great job. The entire play went so well, we were proud!!

We continue to count our many, many blessings as 2009 comes to an end. God amazes me with his timing and his grace in so many situations in our lives!!

I will post with pics when we get back from Florida.

Have a Merry Christmas!!

Maria

2009-12-10T22:15:00.003-05:00

December chemo down....only 4 more to go!!! Wooooo Hooooo!!

2010 is soooo close.

Clinic today went well, although it was a long day. Eli got Vincristine, Pentamadine, and his IVIG. As usual, he was a trooper. He really didn't want to be accessed, so there was some hollering then, but he was fine after a while. We spent the day playing the Wii and DS.

Eli's counts were really high...he has an ANC of 7500!! The doc said she wasn't concerned, she thinks he may just be battling a bug. His platelets and hemoglobin numbers were good, so I am not too concerned. We will go back on December 22 for bloodwork.

Our family continues to be super excited about out Make a Wish trip to Disney. We leave on Christmas Day...Yea!! I am a little bit nervous about the long trip during flu season, but I am going to get over it!!

Thanks for checking in.

Maria

2009-11-29T21:38:00.003-05:00

What are you Thankful for???

How many times have I heard that question this weekend??

My answer is always different, but I have almost said..."how much time do you have?" a couple of times...so, so many things to be give thanks for. First and foremost in my mind at all times is the strength that God has given Eli and our entire family to fight this battle. We are three years into this, and my family is great!!! I have a peace about all of this, and such excitement about seeing this chapter of our lives coming to an end. January 3 will be our three year anniversary...Did ya'll think we would get here?? My family is strong, and I am too.

Eli is amazing. He is about to play football here on Daniel Island just like "the brothers" and is excited about it. He is being coached by one of his friend's dads who is way cool, so I know he is going to have a blast.

The hot topic in our home at the moment is our Make a Wish trip in December to Disneyworld. Because we really have not been on a real "vacation" in three years now, I don't know who in our family is more excited. The folks at Make a Wish are really wonderful, and as I told our trip coordinator, Allison, my hope is that this trip is the most lasting memory that Eli will have of this entire journey. How great would that be??? He already vaguely remembers 2007 (a year that John and I will NEVER forget)...thanks God!!!

Our lives stay really busy. We are walking again in the Myrtle Beach Marathon to raise money for LLS. Please donate if you have time. This is our last year of walking, I would really like to beat our goal of 7K.

Thanks for checking in, and thanks for the prayers. I am comforted by the knowledge that we have such amazing prayer warriors...as well as strengthened!!

Thanks for checking in.

Maria

I am thankful for.....how much time do you have??????

2009-10-25T15:22:00.002-05:00

I finally downloaded pics from my camera after WAAAYYY too long!! 548 pics in all. So I thought I would post a few.

Things here have been going well. We had a long clinic appointment about a week ago, Eli got his chemo, pentamadine, spinal, then we even stayed for the IVIG which takes 3 hours!! We were there all day, but it was uneventful and this way we won't have to have another long appointment.

The H1n1 virus continues to scare me...we haven't gotten any vaccines, and I really don't know when we will, or if. I have decided to just listen to the Oncologist and follow their recommendations. They will only do what is right and the best for my kids, and I trust them whole-heartedly. We have gotten this far, haven't we?

Thanks for checking in. Hope everything is going well for you and yours.

Maria

2009-10-01T20:43:00.002-05:00

Today was an uneventful day at the clinic....other than they got a new WII. See, some creep (and this is a nice word) stole the WII from the clinic. So, it isn't enough that he or she is a thief....they had to steal from children with cancer! WOW!!

Anyway, we were there for a short time. They were able to give Eli his flu shot which is really good. We can't give it to him while he is on steroids, so that means really only 3 weeks a month, and they didn't have it last month. So he has been given the shot. Now we wait for the H1N1 debate. I told our nurse that I am not comfortable with Eli getting a vaccination that I feel has been majorly rushed through without enough testing time. She agreed, and said that they will probably recommend that we wait for at least a month to be sure...he can't get the mist anyway and that is all I think they are giving out at first.

Sunday we went to the celebration for Kinsey, one of our friends with leukemia. She has finished her treatment!!!!!! Yea!! No more LP/s, meds, or trips to the ER every time she gets a fever. We are soooo excited and happy for her family. As I am hoping it will be with Eli, she will probably not remember any of this journey once she is older....what an amazing blessing and the answer to many, many prayers. It made John and I really excited as we began talking about what we will do in April to celebrate....it used to seem so far away, but now it is right around the corner...

We have been staying busy. Eli is having a great time at school and playing soccer. The older boys are loving soccer as well. We remain crazy...but very normal. Thanks for your prayers!!!

Maria

2009-09-15T14:50:00.002-05:00

Well hello strangers!! This has got to be the longest I have gone without updating since we began this long journey.

Things here are crazy!! The boys began school on August 18th and things have not slowed down since...Eli started preschool (he is now in the 4's class) and is loving it once again.

All three boys are playing soccer and the older two are also in Boy Scouts. John and I decided to lead Jacob's Webelos group as well...and on top of it all we let Jacob sign up for football too. As my friend Sallie tells me, I just don't know when to stop. So things here are absolutely nuts.

Eli's counts dropped to 910 right before our trip to Jacksonville for a soccer tournament, but after consulting with the onc we went ahead and went down anyway....luckily, we had no fevers and they were back up last week. We go in this Thursday for Chemo and pentamadine. We are going to try to get it done after school, but if the timing is way off we will just skip a Thursday each month to get his treatment.

I am trying to keep my wits about me with all of the swine flu going around. It seems to be everywhere....and it is so scary for E. This weekend the older boys and John had a stomach virus, but that is nothing compared to this flu thing. Part of my just wants to shut my door and not open it until May when we are off treatment.

I will try to update more. I am getting ready for our last Myrtle Beach Marathon in honor of Eli....third and final year!! WOW!! If anyone wants to join us, let me know.

Thanks for checking in.

Maria

2009-08-06T18:52:00.002-05:00

Once again I haven't been the most dependable blogger....it is just in my nature that I do not want to talk about things when things are going well..might jinx it all!!

Two weeks ago we went in for an LP and chemo. Another very long day, but everything went really well. Eli's counts were 1450 and the other numbers looked good as well. Our steroid week was difficult at times, but manageable.

Last weekend John had to go to Jacksonville, FL to pick his mom up (she was visiting her sister), so we decided to make a little trip out of it and we went to St. Augustine, Fl. for the weekend. It was really fun. We went on a pirate ship, took a trolley tour, saw the old jail, went to the alligator farm, and capped the day off with a ghost tour. The kids had a blast!!

Today was clinic again, and Eli needed the IVIG transfusion once again. It was a semi-long visit but we had our friends Ryan and Ella there and their families kept us company...so it was nice. The clinic got a Wii and that was a big hit!! Sam went on a playdate with a friend and Jacob came with us to clinic.

School starts back in about two weeks...wow!! I cannot believe the summer is almost over. Jacob will be at St. Christopher next week, so it will just be me Eli and Sam...But at the same time I think we are ready to get back into the routine.

Thanks for checking in...

Maria

I am thankful for my friends.

2009-07-12T10:51:00.002-05:00

Fear is something that I have learned to deal with daily now, all of the "what if's" come into my mind, then I tell myself that there is no need to go there....God will take care of us no matter what...then something happens that increases the fear...and I struggle to try to deal with it all over again.

Last year we met an amazing boy, Ryan, and his parents through a friend. They are a great family. Ryan has ALL and had finished his chemo and been out of treatment for a year when he relapsed last year. He went through a bone marrow transplant and everything was going great, then last week found out that the leukemia is back in his Central Nervous System. I think I have mentioned here before that the docs like to say that the leukemia often times likes to "lurk"..the places that it likes to "lurk" is in the CNS and the testes in boys. This is why the treatment is so long. So now Ryan will go through Radiation and chemo with LP's. Please keep him and his entire family in your prayers. Have I mentioned lately that cancer really SUCKS????

So...although we are shooting for our April 25 date with much anticipation, the "what ifs" and fears will continue probably forever...and with God's help we will learn to deal with them and trust that His plan is perfect, no matter what storm it may take us through.

Eli's clinic appt. went very well. We saw our friend, Ella, from Daniel Island. I had to take the older boys with me and her older brother Henry was there so the three of the boys sat on the couch and played with the DS's the entire time. Eli's blood work is good. His ANC is now at 1250, so it is holding steady. His platelets and hemoglobin are great...there were a couple of elevated numbers, but that seems to happen every now and then. We will continue to monitor them and see where we go. We go back in two weeks for our LP and the begining of steroid week again...yea!!

We are continuing to have a great summer. We have been going to the pool almost every day, which everyone is enjoying. The boys are now finished with swim team, which gives us a little more time to enjoy things. I can't believe school is going to start so soon!!

Thanks for checking in.

Maria

Please continue to pray for us and for Ryan and Ella and Kinsey and Aidan and Rachel and all children that are suffering....it is so unfair that they should have to go through this during the time of their lives that is meant to be happy and carefree!!

2009-06-26T21:25:00.002-05:00

This summer has been fantastic so far. Eli's cough is now gone, either because of the antibiotics or the Zyrtec, I really don't know...but then I really don't care either...it is gone.

Thursday was our clinic day..and chemo day. It was a fun day because our friend Kinsey was there. We usually have different days for clinic, but they unfortunately ran into a snag on Wednesday, so they were back on Thursday. Things went better for them on Thursday and we were able to visit as well. Eli again was a champ at clinic. We got our Pentamadine and Vincristine with no problems. He is now on our 5 day steroid pulse...so let the fun begin!!

His counts were still great, but not as high as the past few weeks. His ANC is 1600, which worries me a little bit because they just increased one of his chemo meds to the 150% dosage. The thing that worries me is last year this time it was August when he had a crash in counts and we ended up being in the house for three weeks right before school started...bummer. So please pray that we stay in the "good" range.

Things are going so well, thanks for all of your love and support.

Maria

I am thankful for a great summer with lots to do, and many places to go!!!1

2009-06-16T21:14:00.002-05:00

I know, it has been soo long since I have posted. We have had a very busy time.

School ended with a bang. Jacob made straight "A"s for the last nine weeks, and was just one point away from getting them for the entire year....we are very proud. Sam also did very well, with almost all "3"s. Eli ended the year with only a few days missed (yea) and loved it the entire time!! Again, I cannot say enough about how the day school took such good care of him. He was so sad to leave his teachers, Miss Julie and Miss Kelly. So was I. I honestly don't know if I could have left him with anyone else this year...I sooo knew they were taking such good care of him.

After school was over the entire family went to Atlanta for the weekend. We did it all, going to Stone Mountain for a day, the Georgia Aquarium one evening, and finally...a Braves game with the Hucks family on Sunday. It was all great fun, especially watching the Braves win it in the 8th inning. Then John came back to Charleston and Cher and I took 5 kids to Gatlinburg for the week. We had a great time, although I think both of us were ready for a little quiet at the end of the week. I really love the mountains. It is all so beautiful!!!!

We are back now, and going to Vacation Bible School at church. So fun!! Eli is super excited to go to "camp" every morning. I am working in the snacks instead of teaching, and it has been fun hanging out with adults for a change.

Our treatment continues to go well. Eli was on antibiotics last week for a little sinus infection, but all went well. It was amazing to me that he even took the "yucky medicine" with ease. (and this was augmenton, so it was waaay yucky) He took it twice a day for 10 days with no problem. I am very, very thankful for that. Our prayers are that this year continues to go as well as the past has, we have been so blessed!!

Our summer is going to be full of the pool, hopefully the beach, and some camps in between. Hope your summer goes great!! I will post pictures as soon as I get a chance.

Thanks for checking in.

Maria

I am thankful for where we are and how far we have come....we give the credit for this to God and God alone, he has gotten us this far and will get us through...

2009-05-14T13:55:00.002-05:00

Our clinic visit today was very uneventful. We even left without knowing what his counts are, Wendy will call me by the end of the day to let me know. Eli was quite full of himself today...running all the way to clinic and back....this is a big change from the stroller that we usually have to take. He is just amazing.

We visited our friend Ella in "the big House". She is doing really well, and may be going home really soon....Yay!!!

Well, we have to run to swimming, soccer, and a Taiko drum performance!! Whew!!

Thanks for all of your prayers.

Maria

2009-05-04T19:23:00.002-05:00

Well, as it always goes...never a "normal" procedure day for us!!! Although, this time the fault was ours, not the pharmacy's...everything was going like clockwork until...Eli stood up on his line while playing. OOPS!! OUCH!! He was getting his pentamadine at the time and began to scream as the medicine started going into his skin/chest. Not a great moment for us. But, the nurses took care of us and took the line out and put a warm compress on it...then were were reaccessed and began the day again...whew. They didn't know what type of reaction he would have and told me to call if the area began to blister/hurt once we got home. Nice. But, we came home and all was fine.

Huge blessing of the day/month/year: We went to visit Ella, our neighbor that was diagnosed a few weeks ago and has been in the "big house" all this time. When we were on the floor all of the nurses were just having fits over how good Eli looks and what a big boy he has become...once we visited and we were leaving Eli looked at me and said, "Mommy, how did those ladies know me??" I almost cried. The Lord is so good. Only one year out and Eli remembers very little of 2007 and our time there.

Eli's counts were a great 1850. His hemoglobin and platelets are still in the normal range, so we go on. The onc said not to worry too much about the swine flu....they are monitoring it closely and would let us know the minute they felt we need to take extra precautions with our little ones. So we will continue to be careful, but stay in life.

The older boys began swim team this week. It is such a huge time commitment, but I really feel it is worth it living here on the coast. Eli will take some swim lessons this year as well. He is so fearless in the pool that I would like him to be a better swimmer.

We continue to be so blessed by your prayers and support, thank you!!

Maria

2009-04-29T19:05:00.003-05:00

April 25, 2010...that is our date for "end of treatment"....although John thinks this will somehow jinx us I must say.....we are officially LESS than a year out!!! WOW!!!! In a 3.5 year treatment you think will NEVER end, to be less than a year out is a real joy!! So I am now dreaming of our "end of treatment party".....I am envisioning a beach house party...everyone needs to save the date....this will be the event of the century!!! (At least in the Crowley household it will be :)

I am trying my best not to freak out over the swine flu.....I think a pandemic is scary for everyone...but for someone with a child that is immunocompromised, it is a terrifying thing...I will be asking lots of questions tomorrow at the onc office...Iam feeling as though our entire household needs to "hold up" and not go anywhere until this is all over....

The older boys went to the pediatrician's office this week, all is fine with them. I have to say that I had very little sympathy when the boys freaked out over getting a finger poke...after all that Eli has gone through, I just don't see what the big deal is over a finger poke!! Geez!! We also found out that Jacob needs glasses. I noticed this past weekend as he was watching the TV in the car that he was squinting, so I took him in. He has needed them for a while, but no one has noticed....I am a bad, bad mommy!!!

We go in tomorrow for chemo and an LP. Please pray that things continue to go well for us.

Thanks for checking in. I will let everyone know how tomorrow goes.

Maria

I am thankful for the fact that we live in the US and have such wonderful healthcare!!

2009-04-23T22:34:00.003-05:00

I cannot believe it has been so long since I have written. I must apologize for that. We are staying so busy just living our wonderful lives, I must say that coming back here at times seems to bring me back just a little and I think I might have been avoiding that. Silly, but true. Jacob is playing soccer, baseball, and swimming. Sam is playing soccer and swimming...and Eli is "playing" soccer. It is more like he is playing superheroes on the field while chasing a ball up and down the field, but who is picky???

Eli is continuing to thrive. We haven't had any issues really. His IGG level was low so we did get an IVIG treatment last week at clinic. As usual, the pharmacy somehow screwed things up so it took from 8am to 11:30 for them to get it up to the floor, then a 3.5 hr transfusion...so it was an all day affair. At this point I think I am almost accustomed to the mess ups, so I take them in stride. We had packed to stay all day so it was no big deal. Eli has his friends and toys there, so he really has a good time usually. His counts have remained in the acceptable level, so we haven't increased or decreased his chemo. He has been steady at 125% now since October, so that is encouraging.

We go in on the 30th for his LP and chemo, and pentamadine again. Please say a little prayer on Thursday that we get in to get our procedure relatively quickly. Out of everything we go through, these days are the most trying because of the no eating/drinking all morning until he gets the "sleepy medicine" and then wakes up. Although I think he is most patient for being only 4, it is still no fun for either of us.

April 25 will be T minus 1 year and counting...yes, we will be counting down to actually being FINISHED with our 3.5yr treatment!!! I cannot believe we have come this far, and I cannot believe that we are here....It is by the grace of God that my family is still so happy and relatively unharmed by all of this. As a friend said today, Eli will probably remember very little of any of this. Although I know that John and I will carry the scars in our hearts forever....he will forget, and become a strong and faithful man because of what he has endured. I feel that is how my other boys see things too. God will give us strength to get through it, even if it is so hard we wonder how we will do it....this is proof of that for them and for us.

A little girl that lives here on Daniel Island, Ella King, was diagnosed last week with ALL. Horrible. She is 5 (I think) and is a beautiful little girl with Down's Syndrome. Apparently, many children with Down's get leukemia....I am not sure why. Please pray for this family as they go through the beginnings of treatment. I still get so angry when I hear of another little one with this beast of a a disease....and again...why aren't people screaming at the top of their lungs that we MUST find an answer to Childhood Cancers!! No child should have to endure this.

Thanks for checking in...I will do better about posting here and keeping everyone up to speed..

Maria

I am thankful that we have only one year left of treatment!!!

2009-03-11T22:34:00.002-05:00

I have been so bad about updating this blog. I have a new addiction, online poker. And I enjoy playing at night...so I don't get on here as much. No, I don't play for any money..waaayyy too cheap for that..HA!

The past few weeks have been tough, but we are seeing the light at the end of the tunnel. After Eli's fever and trip to the ER..we all got the tummy bug. By Sunday we were all better..then Eli threw up every night for 8 days. Just threw up once a night, nothing else. He also wasn't eating anything which had me really worried. Finally, last Sunday he also got diarreah. When I went to the clinic on Monday to have them look at him again she was like, "Phew, he had diarrea...now we know it is viral and it will go away"..and by today he is fine. It is amazing how a little virus can get a mother so worried. With all of the meds he takes, I kept thinking what if his digestive system is messed up somehow??? Dr. White has Eli taking Prevacid daily so I wasn't so worried about ulcers...but it didn't matter!

But he went back to school today and was energetic for most of the day. His counts have been interesting to say the least. On the Monday after our ER visit his anc was 800...then when I first took him in with the tummy bug(three days later) his anc was over 9000 and his white blood cell count was "High"....this is a number that is ALWAYS "Low" and many times "Critical"...so I sorta freaked over that thinking relapse??? But the drs said it was actually a great sign because his body was doing what it needed to do to fight the virus that he obviously had. Since then, his counts have come down but only to 2600.

Needless to say, we have been to the clinic lots in the past few weeks and made some calls to the onc on call and again I have to say how blessed we are to have such a terrific and loving caregiving staff.

The older boys are doing well...both are playing soccer and swimming. Eli is playing soccer too...so lots of sports for us.

Thanks for checking in, and thanks for your prayers.

Maria

I am thankful for the staff at MUSC.

2009-03-02T18:56:00.005-05:00

Eli's Team 2009...missing Krissie, Diane, and Toni

Hey. I know I haven't updated in a while, and things here have been crazy. I am going to let Jacob tell you about our past couple of weeks.

Hi!!! I know I've have never written to you guys before, and apologize if it's not good. It is true, we have our last couple of weeks really crazy. My mom walked the the half-marathon and when my friend, Matthew, and I opened the window, we saw the streets littered with runners. I couldn't believe how many runners there was. Oh, and you might want to know Eli was with my dad and Sam, and Eli just puked all over my dad. I just learned that Eli meant to to puke. He gagged and just vomited. Back to the story. Good-night. In the next published posts, I'll write more.

That was Jacob writing some...he had to got to bed so I will finish. The weekend after the marathon John went on a much deserved boys weekend to play golf. I don't think he has done this since Eli was dx. So, as Murphy would have it, Eli ran a fever on Friday night. I had to call Sallie at 2am for her to come over and sleep while we went to the ER. They sent us home at 7am after looking at his bloodwork (which had come up) and given him the first round of IV antibiotics. We kept his port accessed and I gave him the remainder of his antibiotics at home over the weekend.

Last week found us with the stomach bug. I won't go into detail, but suffice it to say that we were 5 for 5 and none of us had a great weekend. I think E might have picked it up at clinic on Monday. They have been seeing alot of this bug and he was the first one to loose his cookies on Tuesday night. So that brought us back to the clinic on Wednesday to spend the day getting fluids. We were able to come home, thank God, and Eli was recovering. What Jacob was writing about was tonight. We finally are venturing out of the house and Eli went to the boy scouts with Sam and John. Well, because of his throwing up so much last week he has been gagging at the least little thing lately. And he gagged, and he lost his cookies!!

We go back to the clinic on Thursday to start his steroid pulse and get chemo. We have been downtown way too much this week!!

Thanks for checking in.

Maria

Although this sounds as though we had a rough couple of weeks (and we have) we are very blessed and thankful that throughout all of this we have been able to stay home...no hospital stays...Eli seems to be battling these illnesses with some strenghth, although he is working with a compromised immune system...Thank God!!

2009-02-17T07:54:00.002-05:00

2 down...1 to go
or
26.2 down..13.1 to go!!!

What an amazing weekend.

"Eli's Team" met again in Myrtle Beach to walk the 1/2 Marathon in Honor of Eli and all those with blood cancers. This year I walked with the names Eli, Kinsey, Abbie, and Cliff on the back of my shirt...walking in these little ones honors.

Friday night found our entire family at the pasta dinner for LLS. Since Eli is the honored hero for the season they asked me to speak...and as I prepared and actually gave the talk "Eli's Story" it hit me just how much we have come through...and all of the people in our lives that have made this incredibly difficult journey bearable. As I showed pictures of my bald, skinny boy in 2007 and the robust boy of 2008 and then there he was looking the picture of health. Boy, we were there and here we are now. We have so much to be thankful for.

Saturday morning 5am came really fast as we left the beach house (thank you to Margaret and Jolly for that) and went to the start of the 1/2. We only had 15 women this year..there were some new folks and some that had walked it last year as well. We even had a couple from Rome, GA who ran it in amazing time!! Although the group was different, it was still a great time. It was definitely a "sophomore" year in this 3 year commitment. Last year all of us were training much more. Partly because of fear of the walk. For me, last year was a therapy of sorts...I was going through so much I could do nothing about that walking for hours talking to my friends was a wonderful way of dealing. I didn't need that as much this year, life has gotten back to normal and things have gotten busy again. We took some walks, but not too much. But we all made it...13.1 miles!! Now I am looking forward to next year, the final walk, and the "beginning of the end" of this for us. The walk will again be in Feb, and we go off treatment in April...wooohhoooo!!

From then on, it was a girls weekend (although all of the girls were at that point walking like 90 year old women!!) What a joy!! As someone said, what a great group of women..to which I responded...yes, I do make good friends....I am very, very fortunate to have such a supportive group of women in my life, and I know that!!!

In all, I think we will come to about $5000 raised for LLS in the walk!! Yea!!

And that was my great weekend. Next year, same place, about the same time!!

Thanks for checking in.

Maria

I am thankful for my friends and that I was able to complete the 13.1 miles !!

2009-02-07T22:18:00.002-05:00

OK I know I have been horribly slack...but luckily everything here has been going really well.

Thursday was procedure day and quite the marathon. We got there at 7:45 and didn't leave until a little after 5pm. There was a mixup with the chemo, so the procedure was delayed and he had to get IVIG after that which is a blood product and takes about 3 hours to infuse. It still amazes me what a trooper Eli is throughout all of this. He was perfectly content the entire time except around 12:30 when he was sooooo hungry and thirsty and just had to fuss about it...which I understood completely because I was hungry and thirsty too :) His blood counts were great:

Hemoglobin 11.8 (normal)
Platelet 178 (normal)
ANC 3800 (normal)

Again, having his ANC so high right now during flu and strep season suits me just fine, but we may have to increase chemo dosage again if it continues to trend up like this.

Our great Nurse Practioner, Lori, let me know our "D Date" for next year.......April 25, 2010....so everyone put that on your calendars. There will be a HUGE party around this date to celebrate our going off treatment. I know it may seem far, but to me it seems so close. When we get to 1 year and counting we will be ecstatic...I dream of days without meds...

Eli has now started our fun steroid pulse. His mood hasn't gotten worse yet, but the appetite is kicking in...he really wants to eat constantly. I think he may also be growing to boot....

One week from today, on Feb. 14th we will be walking our half marathon for Team in Training. I am looking forward to it, but I really haven't been training so I fear I will be really, really sore after....We have a group of about 17 women again and we will be staying at the beach for the weekend. Pray for us please :) I will definitely check in after and post pics and let you know how it went.

Thanks for checking in.

Maria

I am thankful that our friend, Abby, was released from the hospital so quickly after her pnuemonia...it is a very scary thing for these kids and she came through like a champ!!!!

2009-01-17T14:08:00.003-05:00

Hi! There is nothing new to post. I wanted to get some pics up from December that I have been meaning to for a while. The boys continue to do great. Eli is at basketball practice right now, can you believe it?!

Please pray for a clinic friend, Theo, who passed away this morning. May God give his family peace in this awful time of grief.

Thanks for checking in.

Maria

2009-01-08T17:03:00.005-05:00

Today was another long clinic day, although it didn't start out that way. We went in for chemo and pentamadine. The pentamadine takes 1 hour to infuse and the chemo only takes 15 min. Well, the pentamadine came up so quickly I thought we would be home by 11....then Jennifer had Bobby come and tell us that the "hood" in the oncology pharmacy had gone down just as they were preparing our chemo and they had to wait for someone to come fix it before they could prepare our chemo and get us out of there. Do we have the best luck or what?! So, we finally got the chemo around 1 or so. I got home just as the boys were getting home from school, so it was pretty good timing.

Funny thing Eli did today: Jennifer was covering for us because our normal nurse, Wendy, had lots of patients. Eli really is very relaxed when he is there, so this was no big deal. Well, she comes up to him and says, "Can I see your tail?" meaning that she wanted to see his tube so she could hook him up to the IV. Well, this was lingo that Eli is not familiar with...we call it a tubie. So he says. "It's not a tail" and proceeds to pull his pants down and show her his pee pee!!! We then told him what she meant and he pulled his shirt up so she could hook him up. Jennifer wasn't the least bit flustered by it, having two small boys at home. I thought it was funny because Eli has seen so many docs and such that he is so compliant when they ask him to do something. Either of my other boys would have said, "What?!"

We saw some friends that we hadn't seen in a while and they look great. It is so great to see how quickly these kids rebound and adjust.

Check out this video. One of the guys mentions Eli in the beginning. It is a group of men that biked cross country to raise money for Childhood Cancer. It is an amazing clip and I can't wait to see the documentary that will follow. As I have said many, many times before, I think if more people took a look at pediatric cancer they would become outraged by all of it and maybe something would be done about it. It is groups like these cyclists that will make that happen.

http://www.youtube.com/watch?v=h6hEygLJu2

That's all I have today.

Thanks for checking in.

Maria

2009-01-03T20:04:00.002-05:00

Well everyone, we have been on this ride for 2 years now. It is official. WOW. I can say with all honesty that in 2007 I could not imagine ever being here and being so very happy with our lives and aware of how blessed we are every day. I can only say thank you for your prayers and thoughts. They are what got us through 2007, and they continue to uplift me everyday when the "what ifs" creep in....Bring on 2009 and then we move into the Crowley Year....2010!!!

Eli played basketball for the first time today with his team. They are a developmental team, so they really won't play games, just practice and learn the game. He had such an amazing time.

We had a very busy week last week. John and I were able to go out to dinner for my birthday on the 27th, then Sam had a sleep over for 5 of his buddies for his 7th birthday, then we had the Hucks and Tyners over for John's birthday on the 29th....whew....then we did fireworks with the Lawrence family on New Years. We have been sleeping since....haha. No, we have really enjoyed it.

This year we bought a "be a tourist in your own town" pass for January. So yesterday we went to Cypress Gardens and Santee Canal State Park (very cool places) and today we went to see the Hunley. (The first submarine to sink a ship during the Civil War.) We are planning a trip to Ft. Sumter and Patriots Point for next weekend. The pass should help to make January a little more exciting than usual.

I have tons of pics on my camera that I will be posting this week. I am so bad about that, but at least I take more pics now than I used to :)

Thanks for checking in...and thanks for being there for us.

Maria

I am thankful for all of the people who have helped us in the past two years as we battle this beast. (There are so many from friends to doctors and nurses and caregivers of various types) I am thankful for my beautiful Eli who has shown me how to be brave and courageous and spiritfilled and my boys Sam and Jacob who make our lives full.

2008-12-25T23:09:00.003-05:00

MERRY CHRISTMAS!!!

I hope everyone had as great a day as we did today. The weather here was actually 75 and sunny, could not have been more beautiful. The boys got us up at 5am. We made them stay in bed until 6, but it was very difficult. They loved all of the gifts, and we had an amazing morning. Our families came over for brunch and we all celebrated.

I have caught myself comparing this year to last so many times this week it is crazy. We have been so, so blessed in 2008. Last year we spent this week in the hospital (again) with fever. I know this may jinx us, but we have not spent a day in the hospital this year!!! Thank God!! Our prayers have truly been answered, thanks to everyone who continues to pray for us daily.

2008-12-16T19:07:00.002-05:00

What a marathon day at the clinic we had today!!

We got there at 8am and left at 4pm....just like old times :)

Everything went well, just took such a long time. The pentamadine and IVIG went without a hitch.

Eli's counts are: ANC 1724
Platelets 174
Hemoglobin 11.8

So things are still really good. Eli's cough is gone now, so I guess the steroids helped with that. I am glad they helped, because this time things were quite rough!! I again felt as though I was living with the "abusive husband" never knowing what might set him off. He threw 3 major fits yesterday over tiny little things and I thought I might lose it. I was really worried about today because we knew it would be a long day, but it went perfectly. Shows that just when I am good and worked up over something it will turn out ok. Somebody up there is looking out for me....

Today really had me looking at my blessings....although we were at clinic for a long time, that is no longer the norm in our lives. We have gotten to a new normal...there are still the times when I catch myself obsessing over things I cannot control and what might come down the line, but our lives are still really good right now. And as I have said before, although this is not the path I chose, this is the path that will end with Eli being cancer free. That is all that matters. I will take it every time. I warned you a while ago that I am getting sappy this time of year.....

Thanks for checking in.

Maria

I am thankful for running into Dawn and Matthew today. I am so thankful that this precious family is doing well and they are expecting a baby girl in a while!!!

2008-12-11T15:54:00.003-05:00

So we will stick to the IV Pentamadine....

Eli's try at inhaled Pentamadine did NOT go well...apparently there is a terrible taste/smell with the medicine and he screamed the entire 2 minutes or so that we tried it. I even had skittles to help with the taste..but it was not to be. When we got back to the oncology clinic there was a teenager and he does it by inhaler. He said that it really smells horrid and you have to fenagle the inhaler just right so that the mist doesn't go into your mouth and create a horrid taste along with the smell. Obviously Eli cannot do this yet. It also didn't help that in the room where he got the procedure there were NO distractions. It was basically him, me, and the nebulizer. Great. I tried to get him to color, but it just wasn't happening. So...we will stick to IV. It does take 1 hour, but it is pretty painless. He does get nauseous, but they give him Zofran as a premed, so even that isn't an issue.

Eli's counts have dropped, but they are still great:

ANC 1480 (normal 2000-6000+)
Platelets 165 (normal 140-440)
Hb 11.2 (normal 11.0-15.0)

These numbers are awesome with him being on 125% chemo now. They are really where they want them to be, now is just seeing if they can stay there or if they drop. The one number that is low is the immunoglobuling (IGG) level...this means we go next Tues for an IVIG infusion. This one is a long one, very similar to blood (it actually is a blood product) So we will be at clinic for the entire day...so glad Eli seems to enjoy it so much!

I am sometimes brought back into how serious things can be with Eli...things that I wouldn't give a second thought with if it were any of my other boys. Eli's cough is back, although he isn't coughing at all at night and only seems to cough really in the morning. BUT...since it has been around a while, we took a chest xray today. Pneumonia in these kids is such a killer that you can never be too careful. The xrays came back clear, so things are great....thanks to God for that one!!

In a nutshell, that was our day...exciting, I know.

Thanks for checking in.

Maria

I am thankful for the friends and aquantinces that I have met at the clinic. It is amazing how much support there is in simply talking to the mom next to you that is going through this as well...

2008-12-07T20:21:00.003-05:00

This weekend we had so much fun! Daniel Island had a Christmas Festival and we went to listen to Jacob play the taiko drums....the group was great, and we really enjoyed ourselves.

We went to clinic on Thursday because Eli had his first dentist appt on Fri and we wanted to be sure that his numbers were good...his numbers were great, (ANC 2940, Platelets 297 Hgb 12.1) so we went on Friday to the dentist. We got a script for Amoxicillin for just one dose to give to him before the appt. He was such a big boy!! The dentist said everything looks great, which is such a relief. Between the antibiotics he has been on and the chemo he is on, there can be some significant issues with dental stuff. Hopefully we will be able to avoid those side effects....

The oncology clinic moved to the 6th floor of Rutledge Tower....it is so roomy and nice. The rooms are smaller, but there is more a sense of privacy in the infusion room(s). I am glad that this has happened so our kids can be more comfortable when they are getting treatment.

John and I got to go to see Darius Rucker in concert on Friday night and it was great. He has such an amazing voice, I think I would like him singing anything.

Just wanted to share something with you. I got this off of someone else's caringbridge site and I thought it was amazing.....

The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.
Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
by Juliet Freita

This is soooo true, and really answers the "you are so strong" comment. I don't feel so strong, just have to be....I feel any other mother would be doing and acting the same exact way as me if put into this situation. I rely heavily on my friends and family for daily support and prayers. And I recognize daily how lucky and blessed that we are having ALL....and I thank God for that with every breath.

Anyway, I guess I haven't gotten sappy for such a long time I felt it was time. The holidays really get me thinking, and I think this will be the case for the rest of my life. I remember 2 years ago as we noticed Eli wasn't himself, going to the doctor, Eli limping and being sooo irritable...John and I trying to figure out what was happening to him. Finally, New Years 2006 party when I really had the strong sense that something was VERY wrong with him..actually saying the word "leukemia" to my friends for the first time...but that couldn't be it, not my HEALTHY boy....then the diagnosis. Christmas and the New Year will forever bring a certain feeling of anxiousness in my that I can't quite shake.....hopefully over time it will lessen, but I am quite sure this will not go away.

That is my 10 cents for today. Please pray for us on Thursday. We go in for monthly chemo and are getting our pentamadine by inhaler as opposed to iv...hopefully this will work better. The iv has been fine, but it takes a long time and apparently isn't as effective as the inhaler. so we will try it....

Thanks for checking in...

Maria

I am thankful for a wonderful Thanksgiving and Christmas season....NO hospitalizations in 2008!!!!

2008-11-30T20:34:00.002-05:00

How slack have I been???

Here is our life in pictures for the past month. The knight costume wasn't for Halloween, Eli wanted one for his birthday and insisted on wearing it all day long. The one picture of him sleeping is from our procedure day...I find that I haven't taken many pics of us as we go through all of this, so whenever I think of it now Itry to take my camera. Jacob was chosen to be in the "art walk" at school, where they frame and post the artwork of chosen students and we have a walk to take a look at all of it. Finally, there is the boys with Santa...today we went to a Christmas party for Happy Days, an organization for kids with cancer. WE really had a great time.

Eli has had a cough for a while. The onc put him on an antibiotic last week at clinic just in case it decided to turn into something ugly. We have had no fevers...which is great. No hospitalizations...yea.

I cannot believe that Christmas is so close. Sallie and I went shopping on Friday and had a great time. We were at Toys R Us at 4:30am....crazy.

Things here have been going so well I sometimes get scared...but we will take it..

Thanks for checking in.

Maria

I am thankful for my family and that Eli's health has been so good this year...

2008-11-14T20:40:00.003-05:00

What a day we had yesterday! Let me start by saying everything went well, no problems whatsoever. Now, on to the day.

It started with me getting the older boys off to school while trying to keep Eli upstairs. John had to go out of town, so I was on my own. Usually on procedure days I stay upstairs with Eli and get him completely ready so he doesn't have to go anywhere near the kitchen since he cannot eat or drink. Well, I had gotten the boys started on breakfast downstairs and Eli went right in front of me to go down and get going. Well, I had forgotten Eli's pillow and blanket (a must for long clinic days), so I went back up to get them. And I hear a scream and crying.....I race downstairs to see Eli standing at the kitchen table bawling and Jacob yelling at the top of his voice, "You can't eat...You can't eat!!" Then I saw the grape in Eli's mouth....I sternly told him to spit it out in my hand...and he did as he cried and cried. If it hadn't been so funny I think it would have broken my heart.

After that I had the grumpiest Eli I have seen in a long while. All he could talk about was how very hungry and drinky he was...he screamed the entire time Wendy accessed his port and continued to just be very difficult. It was not a fun morning. Everything got ready for us to have the procedure at 11:30 or so, so after that we were able to eat and drink. He was still grumpy for a little while, but then things normalized. Thanks for the prayers regarding the procedure and my worry. I did feel much better once I woke up and realized that in the scheme of things this was not a big deal and we would be fine regardless of what happpened.

I was able to go see the movie The Secret Life of Bees last night with Robin and Jennifer. It was a tear jerker, but a good movie.

Thanks for checking in. I will post pictures as soon as I get them off of my camera...

Maria

I am thankful for the help I have gotten over the past couple of years.

2008-11-11T22:26:00.002-05:00

Boy is it nice not to have anything to write about in here!!

The elections finally being over left me not wanting to watch the news or get on the computer for a while. Although my guy didn't win, I cannot help but be excited by our election of an African American as a president. Go America!! I just hope that he has the experience to lead us out of these hard times. I say now that all is said and done, let's get behind him!!

Things here have been very "normal" Yea!! I went to a weekend (really Friday night for me) at a beach house with a group of moms at the Isle of Palms by Courageous Kidz, a group here for kids with cancer. Debby, the founder, was able to get us an amazing house on the front beach...how relaxing. It was really a great experience. I also went for one night last year...but it was different. As I have said, I think I am beginning to see a little light at the end of the tunnel. It was great to talk to these women about their children, swap funny hospital stories, and overall feel like there are other folks going through what I (we) are. Sometimes there is a great feeling of being alone in all of this, especially last year when we were homebound so much.

We go to the clinic on Thursday for our procedure. Please pray for me to have peace. I don't know whether it is just that things have gone so well so far this year or what, but I have become more and more anxious about this appointment. Eli, of course, will just be himself and be happy go lucky the entire time. As long as I have his "picnic" for him when he wakes up!!

Thanks for checking in.

Maria

I am thankful for us being to November 12, 2008 with NO hospital stays this year....WOW

2008-10-29T20:02:00.003-05:00

I know it is Wednesday and those of you that follow this are saying, but they go to clinic on Thursday. Well, today I went in to see where Eli's counts were because I wanted him to be able to go to the Children's Museum with his class. Then I really thought about it and decided that I was crazy. The Children's Museum here is basically a huge area where the kids touch EVERYTHING...was I nuts???!!! So, we went to clinic, saw the doctor, and then E and I went to the aquarium together. It was the right call...I am glad I made it.

Eli's counts were great: ANC 2450
Platelets 243
Hemoglobin 11.7

All of these numbers are really good. Unfortunately, Eli has the beginnings of a cold or something. Because a cold can either make his counts go up or down depending on the virus (I Told you this was NOT an exact science, didn't I?) the doc doesn't want to increase his chemo just yet. If by some miracle the cold disappears in the next few days she wants me to bring him in to see where the counts are and possibly raise the chemo, but otherwise we will just wait until two weeks from tomorrow.

Our next appt. will be a LLLOOONNGGG day with chemo, pentamadine, and an LP. I asked John if he could come with us...this will be the first LP without the anti-seizure med on board. I am more than a little nervous about it.....I will be reciting, "Do not be anxious..." the entire morning. Diane also said they are debating whether or not to give the kids in maintenance flu shots this year. The reason they don't give it to these kids is because the shots are a "booster" for your immune system...if there is NO immune system to "boost", the shot is useless. I guess the thinking is now that maybe the kids on maintentance have a little bit of an immune system, so maybe it would give them a boost. But he wouldn't get it until he is at least 2 weeks away from his steroids. Apparently, flu shots and steroids don't mix.

We saw lots of our friends today in clinic. We aren't used to seeing the Wednesday folks. Please continue to pray for those that are in treatment and those that have finished. The chemo and antibiotics they give these little guys really do a number on their systems.

The clinic is relocating to much bigger digs!! This is such a blessing for our children. See, the Hollings Cancer Center at MUSC is this wonderful new, state of the art buiding that MUSC has for cancer patients. Only, it is used for only the ADULT cancer patients. (Again, I have to say WHAT?! These are our CHILDREN here.) The children with cancer are at Rutledge Towers with way too little space for all of the children that need to be treated. So our wonderful doctors and nurses at the clinic went to bat for us when a larger space came open in the Rutledge Tower... and they got the space. Now there can be more than 3 kids playing in the playroom at a time. They are hoping to move at the beginning of Dec. We can't wait!!!

Well, that is all I have to report this week. I will post some halloween pics when I get them. The boys are super excited!!

Thanks for checking in.

Maria

I am thankful for the cooler weather here. It is nice to have a change in seasons.

2008-10-17T12:37:00.003-05:00

Whew!! I know I haven't written in a while, but things here have been busy, busy, busy.

The first pic is of the two older boys in their boyscout uniforms. It makes me so proud!! I often cannot believe how grown up they seem....

The next set are from our clinic appt. yesterday. Eli got chemo and we were there for a while. But when I tell people that, they think it is some terrible thing. So I thought I would share with you a "day at clinic with Eli Crowley". The amazing thing is Eli likes going....I have come to the realization that it now is much harder on me than him. (This is something that I thank God for everyday...I could only wish that was always true here...) In the beginning they access his port to draw blood, as you can see it is no big deal (thank you God for ports). Then he gets to watch some TV, usually a Scooby Doo movie. Then he can play in the playroom, make arts and crafts, etc. Then we usually go home. Things aren't always in that order, but they take such good care of us at MUSC that it has really become second nature for him. I sometimes have a hard time getting him to leave, especially if there is some friend that has just gotten there that he wants to play with.

Oh!! Eli's counts were: ANC 2010 (we may increase chemo at the next appt., but he is now at 100% so we really don't want to increase it until we have to.
Platelets 191 (normall)
Hemoglobin 11.6 (normal)
So everything in that dept. is going well.

The last picture is from Light the Night. Light the Night is LLS's version of Relay for Life except it is not all night, just a few hours. All participants get to carry ballons signifing whether they are walking in memory, honor, or support of those with leukemia and lymphoma. They had two honorary heroes, one adult leukemia survivor and one child, Eli. He was super excited and got a certificate and everything. It was really fun...I recommend it for next year!! Since we are doing Team in Training for LLS we didn't raise money, but it was great to be there and see all those that have been affected by leukemia and lymphoma.

Please continue to pray for all of those that are effected by cancers.

My idea for the day:
Let's just have the election today and everyone take the money left in the accounts and give it to charity!! (My choice would be Curesearch, but any charity will do ;)

Thanks for checking in.

Maria

I am soooooo thankful that we live in Charleston near MUSC Children's Hospital!!!

2008-10-02T19:33:00.002-05:00

Today was a good day at clinic, and an absolutely georgeous day here in the Lowcountry!! Eli's numbers were:

ANC 1900 (good, maybe we found the right chemo mix)
Hemoglobin 12.5 (normal)
Platelets 245 (normal..which is good because he has decided it is more fun to stand in the tub than sit and has a few bruises on his noggin to show for it!!)

I was really worried the numbers would be lower because of the cold, but what do I know anyway?! The doc said the cold isn't at all in his chest and his ears look great, so we are good to go for another two weeks. Then he gets chemo and pentamadine again, but it will be another month before he gets his next LP. I love this once every quarter LP thing...it rocks!!

I was talking to another mom in clinic today. Her little guy, Chase, has neuroblastoma and she has been taking him to Sloan Kettering in NY every month for the latest "cutting edge" treatment with antibodies. Even with that for two years, she said the chance of him relapsing is something like 70% and then the chances of getting him back into remission are tough....WOW. It takes a visit like that to really shake me and bring me on my knees thanking God that Eli has ALL...even with a relapse we would have a good shot with a BMT. But you also get to thinking again about how Pediatric Oncology is the real bright spot in the world of Cancer treatment right now...so many advances have been made...but really, are they enough???? Again, my soapbox. I tell you, I don't know what the good Lord has in store for me after all of this, but he sure is giving me a passion in a big way....

The dayschool had the firemen come to school on Wednesday...BIG HIT!!! Eli talked about nothing less the entire day...

Please pray for one of Sam's best friends, Sam L. He took a spill on the playground at school and ended up in a plastic surgeon's office and surgery the next day..he is such a trooper..please help him to heal completely and with as little pain as possible...

Thanks for checking in.

Maria

I am thankful for my family that supports me constantly.

2008-09-28T15:37:00.002-05:00

Thankfully things have been relatively uneventful lately. Eli has a little cold, but between him and the boys starting school that is to be expected....just pray for no fevers!!

Here is one of the very few stories that have been published recognizing childhood cancer awareness month

http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html

take a look...they are some very powerful pics.

We will go into clinic for regular checkup and bloodwork Thursday. It will be interesting to see if Eli will choose to get a finger poke or his tubie. The past two times it has been the tubie..go figure!!

Please pray for another little one lost to this monster, Jayse, and her family. I cannot imagine the grief. May God give them the strength as well as the peace that passes all understanding....

Thanks for checking in.

Maria

I am thankful for more beautiful fallish days here in Charleston!!

2008-09-24T16:50:00.004-05:00

Well, 14 years ago today John and I were married...whew!!

I can honestly say that the past couple of years have been tough for us...really the past three with John's dad passing away in 2006...and I cannot imagine going through any of it without him. He has been an amazing partner and father. Couldn't ask for any better.

Eli's team is officially training. If you haven't gotten a letter from me, you will in the future. Please give as much as you can. As I have said, pediatric leukemia is a success story in the world of cancer, but there is so much that we need to learn. The good thing about LLS is that they also help support those families that need help during this crisis in life. I think that is a good thing. We are so blessed in that we don't have to worry about our medical bills, transportation, etc. It is a real problem for many folks, especially in today's economy. So, give, give, give. Here is the link:

http://pages.teamintraining.org/sc/myrtle09/mcrowleipv

You will here much more about this as the time gets closer. WE will be walking on Valentines Day, 2009.

Thanks for checking in. Because Eli's counts were good and he was on steroids this week we get to miss a week at clinc whahooo....

Maria

I am thankful for John and my marriage.

2008-09-18T20:44:00.002-05:00

Todays counts: ANC 1800 (good considering they increased chemo two weeks ago)
Platelets 191 (Normal)
Hemoglobin 12.1 (Normal)

Clinic went well this morning other than the whole "MUSC time" thing. I told John one morning as he called frustrated that things were taking so long that you just have to realize that it is almost like the twilight zone. The minute you step in those doors time has no meaning....

We got to the clinic at 8am and Wendy accessed us almost immedietly. Then, we went to see Cliff in the hospital while the labs came back and they ordered the chemo...well, we visited, came back to the clinic about 9:45 and the meds still weren't up...he finally started at around 11:00. So, we were able to leave a little before 1:00. But he handled everything so well!!

Because Eli's numbers looked so good and the steroids usually increase them if anything we get another 2 weeks in between visits to the clinic. That is a nice change of pace. I am already trying to plan what he and I will do together next week. Now that he is in school I feel like we don't spend much time together.

The rash continues and Dr. Pollack (our wonderful derm) took another look today. He prescribed a stronger ointment..but we ultimately came to the conclusion that the steroid pulse every month will keep the rash at bay so to speak, so we may just use the ointment and hope it continues not to bother him. As I have said, we know what it is not...it is not infectious, it is not fungal. We just can't figure out what it is...but as long as those two are ruled out, I am not going to worry about it much.

John has been out of town this week so it is just the boys and me. We have had a pretty good week. Sam played in his first football game of the season tonight and scored two touchdowns...he is one tough kid.. Jake had soccer practice and continues to do well.

Thanks for checking in, and thanks for your prayers.

Maria

I am thankful that our clinic appt went well today. I am also thankful that this has become a fact of life for Eli, not something he gets upset about or dreads. He actually seems to enjoy going to clinic every week...

2008-09-16T12:13:00.003-05:00

Have you ever felt like you have been walking in this tunnel for a long time and slowly you begin to see light, then more light, then so on? Well, that is kinda what I feel like right now. I don't think I realized that I was depressed, but I was. I don't know if it is just how good things are going with Eli, getting involved in church again, or everything put together, but I really am feeling "lighter" every day. I know that doesn't mean we are not going to have our bad days or weeks, but I rejoice in what today is giving me!!

A very wise and wonderful woman from church said her sister described it like this: " you see a storm cloud in the horizon and you always know it is there, but it isn't right over your head and there is really no reason to worry or obsess over it being there....it isn't going anywhere and there really isn't anything you can do about it but live your life!!

OK...I have been wanting to share this with you and I had to look back at all of my old posts to be sure I hadn't already. This is a song that someone from church sent to me back in January of 2007 when we were in the thick of things. It has become an amazing song for me...so I wanted to share it. I think it applies to many of us in many circumstances of our lives....

Praise You In This Storm lyrics
I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

If you ever get the chance to hear it, listen. The band is amazing.

We go to the clinic tomorrow for chemo and begin our steroid pulse...yea!!

Thanks for checking in.

Maria

I am thankful that I seem to be coming out of the tunnel.

2008-09-15T12:43:00.005-05:00

Here we are in September again....and here I go about to get on my soapbox.

DID YOU KNOW SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH?! NO????

Many of you watched this last year and cried...so I am asking you to watch it again.

http://www.youtube.com/watch?v=TEg1a8plJq4&feature=related

Eli is in this one....gosh, he has changed so much this year!!!

Please take a minute to pray for all of the families fighting this beast. We are so blessed that Childhood Cancer has progressed so far in the past 20 years, but there are still way too many children dying..and the treatment is so hard on our littlest ones....

I see that many stores are gearing up with the pink stuff...but what about our kids?!

Eli's Team will be selling Childhood Cancer Awareness lapel pins and car magnets for $5. If you would like one, please let me know and I will get it to you. We will be selling them/taking orders hopefully after church as well. I should have them in by the end of the week.

Our fundraising site is : http://pages.teamintraining.org/sc/myrtle09/mcrowleipv

Feel free to give lots!!

Thanks for checking in.

Maria

I am thankful for the staff and teachers at CEDS who have made Eli's transition to school so easy...and give me peace everyday!!

2008-09-11T21:29:00.004-05:00

Today's clinic visit went well. Eli insisted on getting his tubie instead of a finger poke..go figure..I figure he hasn't been able to control much about this whole treatment thing, so I let him decide. He was such a trooper. No crying or anything. So I figured once he was accessed he might as well get his IVIG treatment. The treatment is a blood product so it takes about 3 hours to infuse. I was going to wait until next week because he has to get chemo, but this actually split things in half for us. Eli was great throughout. I am always amazed at how accustomed he has become to the entire clinic process...this is all he knows, and he is a true pro. Our counts were:

ANC 1136 (good)
Platelets 196 (normal)
Hemoglobin 12.1 (normal)

So they again increased his chemo. He is now at 100% again. Unless he goes below 750 again we will stay here. The onc was a little concerned about the rash, but again, we have kinda ruled the worse stuff out. The biopsy said nothing and because the steroids got rid of it it isn't an infection. So we have no idea. One thing that we are trying is switching the manufacturer of one of his chemos. I go on the LLS discussion board where many folks from all over with kids with cancer can go and discuss things, and there have been a couple of instances where a different type of a certain drug caused a rash. We figure it is worth a shot. It is the same drug, so we really aren't changing anything.

I went and visited with Cliff's mom shortly today. They are still in the PICU but she said they would probably be moving to the floor today. When I saw her and the look on her face I knew exactly how she felt...it killed me. Eli was with me, so that was good. When you are where they are now it is so hard to imagine being where we are now. The thing that I think is the worst about pediatric cancer is that the world makes you believe that it could never happen to you....it is so rare...but then it DOES happen to you...and your baby is so sick...it is so awful!! Please continue to keep them in your prayers.

So things here continue to go well. Pediatric Cancer Awareness month is this month, please pray for all of those children battling this monster and those that have lost the battle. There seem to be so many, and it is so unfair.

Thanks for checking in.

Maria

I am thankful for being blessed with such a wonderful church family that helped me and prayed me through the most difficult time in my life. Without them I would be lost...

2008-09-10T13:49:00.003-05:00

Here are some pictures from the first day of school and the weekend at Clemson!! We are so blessed to be where we are.

I have had an emotional week thus far. A little boy that lives in Mt. Pleasant has been diagnosed with Leukemia....I don't know his parents, but they go to the same day school as my boys so we know many of the same people. They are in the PICU at MUSC right now...and I am thinking about that first week constantly. I remember how desperate and overwhelmed I felt for what seemed like an eternity. Anyway, I am going to reach out to the parents when I get a chance...what an awful thing to have to go through....I know because I have been there.

We go to the clinic tomorrow. I will let you know how things go.

Please pray for Cliff and his family as they go through this. Cancer Sucks!!

Thanks for checking in.

Maria

I am thankful for where we are now in treatment and how well things are going.

2008-09-04T19:31:00.002-05:00

Well, we started school!! Eli was great. I was fine after a good cry at home. I think it finally hit me...the whole year...where we have been and where we are now. As I have told many, many people, we are putting 2007 far behind us. I think up until now we have been very careful in 2008, just really not pushing the envelope. Eli starting school is our first big step out of our, or my, comfort zone. I know he will love it..and they will take good care of him.

We are going to Clemson this weekend for the Clemson/Citadel game...we have been watching the weather very carefully, and it looks like Hannah is going to just be a tropical system that stays out to see, so we are going. I think Ike may be a bigger problem next week, and then there is Josephine behind him. Goodness, who knew it would be so exciting living in the Lowcounty.

We actually got out of going to the clinic this week because Eli's counts were so good last week. His rash is back, but I am not getting excited about it because it seems not to be anything major. We will go next week and then the next is steroid week with chemo at the clinic. They are going to give him his IVIG that day so I am hoping we can try to only access him once a month. Those finger pokes are just so much easier.

Thanks for checking in and have a good weekend.

Maria

I am thankful for living in such a beautiful place...hurricanes or not!!

2008-08-28T13:31:00.002-05:00

Eli was able to throw the first "pinch" (as he says it) at the Riverdogs game!!
What a thrill. All of the boys were just so excited and Eli did a very good job, almost making it to the plate!!

Cinic today went well. Eli's counts are:

ANC 5320 (WOW)
Hemo 11.5
Platelets 196

I think the numbers we are seeing are the week that he was off of chemo. I am sure they will come back down....but I am kinda glad they are high, because Eli starts school tomorrow. And mommy is freaking out just a little bit!! I really feel in my heart it is what is best for him, but I am terrified of the exposure. I spoke to the onc about it again today, and she said not to worry. He will be exposed, and get sick, but we will go with the punches. If there is anything really bad out there like chickenpox or strep, I will take him out for a while. But he is so excited!! I do ask for your prayers once again....that I find peace in all of this. It is alot harder than I thought it was going to be when we first decided to do this.

I will have our "Eli's Team" webpage ready soon, so get your wallets ready!!

Thanks for checking in.

Maria

I am thankful that Eli has an almost normal immune count to begin school.

2008-08-24T19:17:00.003-05:00

Here are my handsome boys in their Clemson garb!!! Don't you just love it?!

We are on the steroid rollercoaster once again, and I can really say that I think I am ready to get off!! As I have told many people, it must be like living with an abusive partner..you never know when he is going to blow...not fun with a three year old...but it will be over soon.

I haven't heard from the derm, so my assumption is that it is alright. The rash has gotten considerably better since he went on steroids. They thought that it might help, so we will se what happens when he goes off of them.

Eli will be throwing out the first pitch at the baseball game tomorrow night....wish us luck.

Thanks for checking in.

Maria

2008-08-21T19:31:00.002-05:00

Well, the big boys are back to school and I think it is going to be a banner year for both of them. They both seem to have really great teachers and lots of friends in the class.

Yesterday we went to the Neurologist to discuss Eli's brain...and seizure. The dr seems to think that the seizure could have been solely due to the Methotrexate that was given and that the lesions may have just been a coincidence. He said that he thinks that there are probably more kids than we think walking around with these types of lesions, we just don't know it because they don't have an MRI. He thinks the event that caused the lesions is long gone and that Eli's brain should recover without problem. We are also taking him off of his antiseizure med as of next week. We will keep a "doomsday" kit at the house just in case it happens again, but we are praying that it was a true one time event.

Today we went to the clinic and started.....Cycle 5!!! Why such a big deal, you ask? Well, cycle 5 is when we no longer get an LP on month one and two, now we just get one once a month at the beginning of the cycle.....and today was a LONG wait to get his "sleepy medicine". We got there a little before 8 and were finally asleep about 11:30. I thought the grump was going to start chewing my shirt!!

We had the dermatologist take a biopsy since he was going to be asleep anyway. We should get the results in the next day or so. He also saw something on the bottom of Eli's foot that lead him to think that he may have some type of Hookworm stuff and that may be the cause of the rash and everything. He said he really doesn't see it that often present itself this way, but Eli is no textbook child now, is he?! So we will wait and see what happens. I am glad we did the biopsy so we can rule out any of the really yucky stuff right away.

Eli's counts are still rising. ANC- 1380 Platelets-178 Hemoglobin 11.3 Yea!!

All great numbers. They have him on 50% chemo right now, a big change from the 150% he was on before his numbers crashed. We have to keep him at this level for a couple of weeks, then begin to increase them again. I am just glad that we will have good numbers for the start of school and everything. That way I will feel more confident sending him there.

I read tonight that a little girl we see at clinic has relapsed. Her name is Jayse. Please pray for her family during this most difficult time. For those that wonder how we do it...take the pain and multiply it by 100...I cannot imagine.

Thanks for checking in.

Maria

I am thankful for the amazing families that we have come in contact with through this awful disease.

2008-08-16T16:44:00.002-05:00

Sorry for the long delay in writing. We are trying to cram as much as we can into the last week of summer!!

John took Eli on Monday morning and his ANC had risen to 1136!! Yea!! Unfortunately, the bloodwork took so long that we knew going far was out of the question. So, we took the boys to Myrtle Beach which is only 1 1/2 hours away. We went to the Ripley's Aquarium which was a blast. Then the boys wanted to go the Magiquest which was another $75....we decided to let them play and drive home instead of spending the money on a hotel room. Everyone had a great time and it really was relaxing.

Wet took Eli to the dermatologist on Thursday because he has a rash that seems to be spreading....and the diagnosis was exema...I don't really understand how this can just "pop up" and spread around, but the derm seemed to be sure. It is funny how the oncologists basically say "we have no idea, go see the derm"...I know they are specialized and all, but come on!!

Last night John and I went to see Hootie and the Blowfish at the Family Circle Cup. We went out before with our friends, Sallie and Robert, and then sat by ourselves. I didn't want to jinx us and get tickets before yesterday. It was really a fun concert, but it really does age you. I could not help but sit there and think about seeing them at Myskin's Bar downtown Charleston when no one knew who they were. (I know you remember that, Jennifer!!) At the end Darius Rucker would sing "Oh Mandy" without any instruments and you were just floored by his voice....who knew?? Anyway, it was a great night.

That is all that is going on here. The big boys start school on Monday and I really can't wait. I think they both have really great teachers and it is going to be a great year. Eli will start preschool in Sept.

Thanks for checking in. Please keep all children battling cancers in your prayers. It seems that cancer is affecting so many little ones.....

Maria

I am thankful for the moments in our lives that seem to be so normal, so before cancer.

2008-08-07T11:41:00.002-05:00

And the counts are:::

Hemoglobin 10.2 (Up from last week)
Platelets 190 (Up from last week)

Can we have a drumroll please.....

ANC 310 (Groooooooaaaaaaaannnnnnnnnnnnnnnn!!!!!)

This really sucks. No way around it.

Aside from the fact that we were really hoping to take a trip to the mountains for a few days, I am tired of being inside my house. I know Eli is tired of being inside the house. This is truly the tale of two Summers......first half of the summer the counts were so high that we basically had no restrictions. Now we are so low that we cannot go inside anywhere...and it is so hot we really can't go outside anywhere. (Anyone say Heat Index over 105 today?!) I am soooo frustrated by this.

Tomorrow Eli will go to my parents' house for the evening while we have Jacob's birthday party here. (Thank God for them.) We are just having 6 boys over. We are going bowling and then coming back here for a sleep over....it should be a fun night!!(Yes, that is sarcasm.)

On Sunday, John is going to take the older boys to Clemson for Fan Appreciation Day. They will be able to meet the players and get autographs, etc. We were hoping to put it all together with the mountains, but that isn't going to happen now. Eli and I will go in early Monday to see if the counts have come up. If they are up to 1000 (I'm not going to hold my breath here) then we may make a little trip to Charlotte or Columbia. WE will just have to wait and see.

Because the counts are below 500, we have to suspend Chemo until they come back up...then start the dosage game all over again...fun, fun, fun.

Other than my frustration things here are going well. Eli has a little rash on his leg, but the onc didn't seem to think it was contageous or anything to worry over, so I won't.

Sorry for the rant....again, I know we are blessed that he remains healthy (relatively speaking....I know he has leukemia and all...but no colds or bugs)

Thanks for checking in.

Maria

I am thankful for my parents and that they live so close to us and are there when we need them!!!

2008-07-31T13:29:00.002-05:00

Bummer...Eli's counts are down again....

ANC 520 (This was the unofficial count, but it prob won't get better)
Hemoglobin 9.9
WBC 1.2
Platelets 158

We stayed at the clinic for a while, I was hoping that we could go to the aquarium, but Bobby came in and gave us the bad news....so, we are once again homebound or close to it.

If the official count comes in at under 500 we will actually have to suspend hie Chemo for a week or so. His chemo could be causing the counts to go down, or he could have some little viral thing brewing that we just haven't seen yet. These things are normal in treatment, but it stinks all the same. It is so hot, the only thing we can outside is really go to the pool...and we are a no go for that. I put my parents on alert for Jacob's birthday party next week. He wanted to have a sleepover and we agreed, but with his counts low Eli will have to go elsewhere.

I feel guilty complaining about being homebound for a couple of weeks....I so easily remember last summer and how we couldn't "do" all summer long.....I am very aware of how blessed we are!!!

Tomorrow is Bobby's last day at the clinic so we said our goodbys...she will be right downstairs, but it is going to take some getting used to with a new nurse. They are all so wonderful there that I really do not worry in the least about quality of care, but getting Eli accustomed to someone new will prob take some time. We will adjust and manage...isn't that what life is all about?!

I guess that is all I have to report for now....Thanks for checking in.

maria

I am thankful for my friends.

2008-07-27T19:09:00.002-05:00

Well, we knew it couldn't last forever.....Eli's counts were:

Platelets 135
WBC 1.3
Hemoglobin 10.2
ANC 820 (This is the number that stinks!!)

So...we are inside for awhile. We went to Jacob and Sam's finale for Camp Invention and Eli had to put his mask on. Since he hadn't worn one for at least 5 months or so we were nervous that he would give us trouble, but he was a trouper and kept it on the entre time without a word!! John took the older boys to church without us. this is really where we want his counts to be (it means the chemo is working)..but the high numbers sure were fun for a while. I do worry about the winter time and cold and flu season....we will see where we go from here.

We did begin our steroids on Thursday as well, and that has been a fun ride. He is just so short tempered during these times. It is hard to remember that he is not really responsible for his actions...haha. All I can do is hold my breath and count to 50 or 100 at times to calm myself down.

Training for the half marathon in February is beginning again. Anyone interested in being on Eli's Team this year, please let me know. We really had a blast last year, even during the 13 miles walking....let me tell everyone out there...you CAN do it!!!! It was either Jane or Kendra that said this last year, "If Eli can go through chemotherapy for 3 1/2 years, you can at least walk 13 miles"...how is that for a major guilt trip?! I have to say after that statement, no one complained at all!!!!! Anyway, I would love to double our money this year to $30,000!!

Thanks for checking in. I hope your summer is going well.

Maria

I am thankful for the glorious summer that we have had.....

2008-07-17T20:02:00.002-05:00

Well...Hello strangers!!

I know those of you that check this regularly thought we had fallen off of the face of the earth, but no. Things here have continued to be crazy, but a fun kind of crazy. These are a couple of pics....one of Eli and Abrielle in a really good black mail pic for later in life, and the other is of Jacob with his medal for completing his very first Triathalon!!! (For kids, of course)

We went to the clinic today and Eli's numbers were good....

WBC 2.4 (Normal 5-11) good
Hemoglobin 10.2 (Normal 11-15) Good
Platelet 135 (Normal 140-440) good
ANC 1830 (Normal 2000-6600+) Good

We played around with his methotrexate again last week looking for the perfect combo....we hope we have found it. I have been quite worried lately about Eli because he seems to be "moody" kinda like he was right before we were diagnosed. The problem with this is that he is three, and he will be moody. If it were either of my other two I would just say they were going through a little phase, but I don't think I will ever have the luxury of that kind of thinking with Eli again. So....I spoke to our great NP Lori in the clinic and she talked to me about "what relapse looks like" and really looked him over. Then she had Dr. Hudspeth come over and take a look and listen. They both feel great about the way he looks, etc. And his numbers still look good...the only problem with the "numbers" per se is that they are so skewed by the chemo he is getting that you really aren't looking at the whole picture. But both of them said they thought he looked and felt fine, so I will be semi content with that for the moment. As I told Lori when we were discussing the fact that I will worry anyway....Jan 3,2007 changed that for me with Eli...I will ALWAYS worry about what it MIGHT be with him, and all of the possibilities are enough to keep me up at night.....ANYWAY.....the clinic visit went fine....we go in next week for the long visit, he will get Vincristine, Pentamadine, and IVIG which takes 3-4 hours....oh! our really crummy news is that Bobby, our FAVORITE and greatest nurse is leaving the clinic for another job at MUSC. It is a promotion for her so we are somewhat happy, but boy are our visits going to be different without her!!! Maybe Nikki will decide to come work in clinic instead of in the hospital?!~

On a political note, I got this email today and wanted to share it.....

CureSearch Praises Passage of Landmark
"Conquer Childhood Cancer Act"
by Unanimous Consent in the United States Senate

Children with Cancer and Their Families to Benefit from Legislation

July 17, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.

The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.

"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."

Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.

"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."

CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.

"The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.

"On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer."

"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.

Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.

Glad to see this happen finally. As I have said before, I know that the numbers for other cancers such as breast and colon are much higher....but the amount of money that is spent on just ONE of these cancers versus the measly $30 million for ALL Childhood Cancers is overwhelming....and I really think that if these congressmen will spend just one day in the clinic of St. Judes and understand what these kids are going throough, maybe they would have done this a while back. This is not a world that I chose to be in....and I would NEVER in a million years wish this for any other family...but my eyes have been opened in a way I wish everyone's would concerning Childhood Cancer. In our own little MUSC world I have KNOWN 3 children that have died.....those are lousy statistics in my book....OK, off my soapbox now....

So...Eli is going to be one of the heros for the LLS "Light the Night" on October 16th. It is going to be at the Maritime Center downtown. It is very family friendly and only lasts from 6-8 or so....let me know if you would be interested in being on a team or just coming.....I am going to see how things go...but we WILL be there!!

Who knew I would have so much to say???? I guess next time I won't wait as long to write. I hope everyone is doing well.

Thanks for checking in.

Maria

I am thankful that we had Bobby for our nurse at the clinic during last year. WE are going to really miss her, but she was an amazing help during what was by far the hardest year of my life and Eli's....

2008-07-04T21:40:00.002-05:00

Boy are we having a full summer!!!

We have done Vacation Bible School. I volunteered to teach a class, which was a blast as usual, so Eli got to be in his "own" classroom as well and he had so much fun. By Friday he was really tired, but having a good time. We are also doing Swim Team for the older boys this summer, so lots and lots of time at the pool. Both boys have improved dramatically in swimming over the course of the past two months, so I am really glad we pushed them to do it.

We went to Atlanta to visit the Valdes family and then brought Cher and the kids back here for the past week. WHEW!! Five kids is WAY different than three....but we all had a blast. WE went to the water park, the beach, and the Atlanta Zoo.

It has been such a full summer so far, I am starting to wonder if it is too full, but then I think about the fact that Eli and I really did nothing last summer and he and I both deserve it@@

We went to clinic last week for his LP and Chemo and all went well. His five day steroid pulse was a little hard, the prednisone definitely has a harsher affect than the Dex for us, but we will take a little bit at a time each month and smile. Eli's counts were still good with an ANC of 2100. The clinic was closed yesterday and today, so we actually got to skip a month....imagine that?!

Thanks for checking in....I will post pictures soon.

Maria

I am thankful for this great summer that we are having...

2008-06-19T14:58:00.002-05:00

Today's visit went well. Eli and I left VBS early so he could get a bone density scan and that was fine. For some reason Eli had it in his mind that "they will take a picture of my face and spray it with hot peppers"?! So, he was nervous a little at first, but it was no big deal. His clinic visit went fine as well. We got to see our favorite nurse on the floor, Nikki, which was a huge treat. Eli's counts are:

ANC 2500
Hemo 11.9
Platelets 170

All good numbers, too good. So once again, we increase his chemo and see where we go from there. He gets his LP and chemo at clinic next week. We will be going to Atlanta for a few days to visit the Valdes family again. WE have been so busy with swim team and VBS this week that we need another vacation. HA!!

Emotionally this week has been hard. Following such a great week at the beach where I really felt more removed from our "situation" then any other time since Jan 3,2007; I feel I am being bombarded with harsh reminders of Eli's cancer and what it means. We had a little friend, Justin, die last week. I will be going to his visitation tonight. He was just nine years old. Another friend, Zachary, who is less than a month away from going off treatment is back in the PICU with Pneumonia. So, the reminders of Eli's cancer and what it means come crashing into our little world and we are back in the world of Pediatric Cancer. A world that I truly detest being a part of....one that I wish more folks would open their eyes to and help do something to stop. It is NOT fair what these families and children are going through...Again, as I have said before here, I realize many more people get Colon Cancer and Breast Cancer, but these are our children!! Ok...now I will get off of my soap box. Please do pray for the families of these two boys and pray that Zachary makes a speedy recovery and is home soon.

Sam and Jacob are doing really well at swimming. I think it will definitely help them with their Fall sports because they have been getting such good work outs this summer.

Thanks for checking in.

Maria

I am thankful for Eli's health the past six months and pray that it continues.

2008-06-16T13:45:00.002-05:00

Welcome to summer 2008!!!

We just spent the most amazing week at the beach....nothing could have gone better. The weather was perfect, no rain until we went home. Eli is definitely making up for lost time. He surfed all by HIMSELF...and went out in the WAY deep with daddy lots. We got a house on front beach and we are now officially spoiled...We got to see the Hucks family and the Holt family...it was a great time for everyone.

Sam "graduated" from Kindergarten before we left. It was a great little ceremony. JAcob also had awards....straight A's for the year....we are very proud of both of them....

We are doing VBS this week which is so much fun for all of them. Eli even gets to be in a class and learn about Jesus...

Thanks for checking in.

Maria

I am thankful for this wonderful summmer......

2008-06-03T12:57:00.002-05:00

We have been having such fun!!

Summer is just around the corner, and we are ready...we all went to the new Hard Rock Park in Myrtle Beach with Camp Happy Days on Saturday and had such a fun time. Again, the boys' favorite part was a small water park inside of the park where they could get wet and have fun. We had a great day.

Thursday's clinic visit was uneventful but long. Eli got his LP so there was no eating or drinking, which made for a grumpy guy. But we got home around 3pm. His counts continue to be good:

ANC 2140
Platelets 190
Hemoglobin 12.1

They have come down some, which is good. This week he is on his steroids, so they may take another jump up. We are going to Garden City Beach for our vacation on Saturday, so honestly I wouldn't mind them being high another week. They have switched Eli to Prednisone from Dexamethosone. Everyone on his study got switched...and we are definitely seeing more steroid "difficulties" this time around. I am hoping it is because this is a new drug for him and that he may get used to it with time. Dr. Kalpatthi agreed to do a bone scan although it really won't tell us if Eli is prone to AVN or not, just how strong his bones are at the moment. As I have said before, this is just a side effect that we will look out for. It isn't as though this would have changed any of our decisions in his treatment. Unfortunately that is the big problem with Pediatric Cancer treatments. There seems to be success, but at a cost. These guys are little and in the middle of serious development....any disruption to that can be really hard to overcome. But overcoming obstacles in life will be fine as long as Eli is there to overcome them with us !!!!

Out of the mouthes of babes......Sam got so excited when I told him we were going to Hard Rock Park with Camp Happy Days that he said, "you know mom, sometimes I am happy that Eli got cancer..." I told him then that we would still get to do this fun stuff if Eli weren't sick, and he agreed that we really do spend a lot of time in the hospital....maybe not. What honesty!! We are so blessed that this has not taken a bigger toll on our other two.....I hope that is how they remember this time in our lives, even if my memory will be totally different!!

I will try to check in one more time before leaving Sat morn. Thanks for checking in.

Maria

I am thankful for my parents who have loved us and supported us through this!!!

2008-05-22T14:16:00.003-05:00

This morning was a quick trip to the clinic, then off to the aquarium for us. Eli was really excited to be going to the aquarium, so everything else went off without a hitch. His toe is beginning to look bad again and we haven't had this problem since we started LTM in September. Then I thought, well, he also has been wearing sneakers since about September. I wonder if it is his shoes? I will soak the toe, keep looking at it, and encourage him to wear the sneakers for a while.

His counts were: ANC 3420 (Normal but still higher than we want.)
Platelets 230
Hemoglobin 13.0

The counts look good....Bobby also said the enzyme levels I was worried about came down to more acceptable levels. Glad to hear that. Whenever we increase a med like we did a few weeks ago I always worry about the possible side effects we could experience. The methotrexate effects the liver and that is what the enzyme levels are all about. Again, just a side effect that we will deal with as long as he is relatively healthy at the end of all of this.

It was good to see all of our buds at clinic. Ryan Post looked awesome and seemed to have tons of energy. I love it when we have days like today in clinic.

Eli is turning into a merman!! He has decided to do "swim team" like his brothers, so we are going to the pool just about every day and he is putting his head in the water and swimming along with them. He always has his swimmies on, but I don't think Jacob put his face in the water until he was 5 or so!!! What a big kid!!

Please pray for the family of Elijah Carlson, another little guy that lost his battle this week. I really hate cancer and all that it does to our families and watching these kids die too young....there are no words to express to those families that have lost a child...

Thanks for checking in.

Maria

I am thankful for such an uplifting day at the clinic. It was great to see everyone there looking so happy and healthy!!

2008-05-15T19:49:00.002-05:00

Today's clinic appointment was uneventful, just like we like them. We were there for a while because he got his IVIG treatment. Because it is a blood product they infuse it over hours in case of a reaction. It went well, no problems. His counts are:

Platelets 192 (normal)
Hemoglobin 11.2 (normal)
ANC 5426 (normal)

The ANC is way higher than they like to see....but we increased the methotrexate two weeks ago, so now we wait to see if the counts stay high or he may be getting ready to fight some type of infection. (Don't you just love how exact medicine is??!!) He could have also gotten a "boost" in his counts from the steroids he finished last week, who knows? We will wait another month (6 weeks in total) and then we will probably increase some more meds. The problem is we have to watch for any other side effects as we increase these.

The study that Eli is on has been suspended due to older children developing something called AVN due to the steroid dexamethasone. This isn't very common in children Eli's age, but not unheard of. I asked the doc if we should get a bone scan since we were on the arm of the study with a full 21 day cycle of dexamethasone. She said she would talk to the "team" and get back to me. The thing is that they know the dex works to help the chemo, so it is a good thing, but this AVN effects all of the joints and bones in the body and basically eats them away sorta. Not a good thing to have....but I guess none of the side effects are, huh? So we will wait and see on that one.

We also asked for a consult with nuerology in a few months. Eli is getting ready to start his last cycle of 2 LP's every 3 months to 1LP every 3 months and we have talked about taking him off of the anti-siezure med we have had him on since last year's seizure. But as John and I talked about it, we realized that we really hadn't asked a whole lot of questions regarding his lesions, seizure, etc. at the time. We were barely holding our heads above water. Now we think we should really go into a real conversation about how this may affect Eli's learning, etc. See what the docs can tell us based on the MRI's he has had over the past year.

Things here continue to go really well. We saw the one of the fellows at the clinic today that we haven't seen since Christmas and she really didn't recognize Eli at first....he just looks so great.

Thanks for checking in.

Maria

I am thankful for our wonderful doctors and nurses that take such good care of Eli.

2008-05-12T10:01:00.002-05:00

HAPPY MOTHER'S DAY!!!

I hope all of the moms out there had a great day....we sure had a full weekend.

I know that I have been really lax in posting, and I will try to get better. For some reason my computer has been really slow and I get frustrated and turn it off!!

Eli's visit to the clinic last week went off without a hitch. We even took John's mom to get an MRI while we were there, and although she had to wait a while for us, things went fine. Eli's counts continue to be good, in fact they are too good....so, we increased his Methotrexate that he takes every week to see if we can get him in that "range" that they want him to be in for chemo.

This week we got a finger poke at home, but his blood clotted on the way to the lab so we never got the counts. I think we will just go in weekly so we can always get the update. I live by those numbers, and I don't like flying blind for a week. This week we will go in and get his IVIG, which is an immunoglobulin transfusion to help with his immune system. Because it is a blood product it takes some time, but everything should be fine.

We had such a great weekend!! Friday Eli was the "honorary co-captain" of the local major league soccer club, the battery. He got the flip the coin and everything and was such a big boy!!! The Team in Training team that set it up raised lots of money for LLS...so thanks to those that came out!! Then we went to St. Christopher camp at Seabrook Island for our church retreat on Saturday and got to spent the day on the beach will all of our friend. We spent the night there and came back yesterday afternoon. Whew!!!

As I watch Eli this summer, I am amazed at him and my other boys and how they have adjusted to all of this....

Please pray for the family of Samuel Bachcus, a little six year old soldier that lost his battle this week....also pray for all those mothers that have lost children. I cannot help but think what a difficult time this must be for them.

I will try to post every week....promise.

Thanks for checking in.

Maria

I am thankful for my mother!!!

2008-04-26T09:14:00.002-05:00

Whew!! What a full day we had yesterday. We went to the air show at the Air Force Base with Happy Days and Courageous Kidz and had a ball!! We watched the Thunderbirds perform and even got to meet all of the pilots and get autographs. It was really cool. Aunt Judi even met us there and got to spend a little time with us on the flight line.

We got home around 5:00 or so and then at 6 we were off to the Relay for Life in Mt. P. We saw lots of friends and got to walk the survivor lap with Kinsey and Ryan, our friends from clinic. All three of these children are doing wonderfully....which is such a blessing. We finally got home around 8:30 and promptly went to bed....

Hope your spring is going well. Ours is!! Thanks for checking in.

Maria

I am thankful to get the opportunity to meet other families affected by cancer and watch as these kids overcome these amazing challenges....it is truly inspirational!!!

2008-04-22T13:07:00.003-05:00

Again, I have nothing interesting to say today...but I was looking through photos of last year and was amazed at the difference in Eli!! What a difference a year makes..

Thanks for checking in.

Maria

This is what I am sooo thankful for today and every day!!!

2008-04-18T07:51:00.002-05:00

Today Rachel Harvin came and gave Eli his finger poke at home so we didn't have to go into the clinic. We are trying this to see how it works so we will only have to go into the clinic every other week. We have had some small glitches the past month, but today went beautifully. Eli got his poke while watching Spiderman and it didn't bother him at all!! His counts are still good:

ANC 1016
Platelets 177
Hemoglobin 12.2

All the numbers are where we want them to be and Eli continues to be in a fantastic mood. He is wanting to go to the pool everyday, and with the chilly weather this week, we weren't able to go. But now we are supposed to see the 80's for the next week, so I am sure we will be pool bound!!

Jacob and Sam continue to do well at school. John is traveling, but we find our "rythm" when he is gone and mangage OK.

Hope all is well in your world. Please pray for Samuel, a little boy battling for his life. As I have said many, many times on this site....I am reminded daily of how lucky and blessed we are to have everything that we do!!

Thanks for checking in.

Maria

I am thankful for my friends who have been there for me!!

2008-04-16T19:14:00.001-05:00

I do not have anything to report...just wanted to share this amazing photo taken by Sarah Hyslop, a Team in Training participant who is doing the Philly Triathalon in honor of Eli.....I ask you, does this look like a kid with Leukemia to you?! Thank you God!!!!!

Maria

2008-04-10T21:40:00.002-05:00

Again, I have been soooo slack.....but the funny thing is that I give thanks to God that I have had no news to tell everyone!!!!

Things here are going really well. Eli got his Spinal Tap last week and everything went OK. There was a little glitch with his Oxygen Saturation Rate (It got down to 85 for a minute or so...), but it came back up and everything went OK. The steroid week went OK. Cher came from Atlanta with Alan and Abrielle and that was a blast. Cher got to see a couple of steroid induced parties, but for the most part Eli was really good.

Today we went in just for blood work and I really wanted them to listen to Eli's chest. He has had a cough for about two weeks now, it seems to just be allergies, but it keeps me worried all the same. Counts were amazing:

ANC 2950
Hemo 11.4
Platelets 177

The ANC is always elevated right after steroids, but we will take it!!! WE are taking the boys to see the "Walking with the Dinosaurs" show at the coliseum this Saturday and I feel much better knowing his counts look like this....

We took the little ones to the pool on Sunday and they both had a blast. I am so going to enjoy taking my boys to the pool this summer. Last summer we were so limited in what we could do with Eli... the boys had the summer of camps because I couldn't really go anywhere...this summer should really be great. We are already looking forward to the beach in June with the Hucks family....

Jacob made all A's again this nine weeks....we are so proud...and he is so happy. When he makes all A's he gets $70 ($5 per A and $20 for all A's) Sam didn't get a report card this go round, but it looks like he may do as well as Jacob.

I hope all is well with all of you. Please keep us in your prayers....we know this is what keeps us in this good place.

Thanks for checking in.

Maria

I am thankful that we will get a "normal" summer this year....

2008-03-30T18:04:00.002-05:00

We had a really uneventful weekend, and week. Eli didn't have to go into the clinic this week, we tried to get the blood at home, but it clotted twice so we ended up without results for the week. Although I really like having those numbers everything looked so good last week that I figured we were alright.

We go in Thursday for our monthly spinal tap, vincristine, and the beginning of steroids. So it will be a long day for us....but at least it is only once a month or so, and this time we get two months in between....YEA!!!

Here is a picture of our kids with the Hucks children and the Valdes kids from last weekend.

Thanks for checking in.

Maria

I am thankful for Eli's boundless energy!! ( I really never imagined saying that?!)

2008-03-25T15:28:00.002-05:00

Happy Easter!!!!!!

I hope everyone had as good a weekend as we did!!!

We went to Atlanta to visit two of our favorite families...the Valdes family and the Hucks family.....and had a great time!!

We went to the Atlanta Aquarium and had a blast.....the boys so enjoy an aquarium. It was HUGE and so fun. We managed to get there early enough to beat the crowds. Then we went to the ESPN Zone...WOW. The boys loved playing with Abrielle and Alan again. It amazes me how they can just pick up right where they left off....but I guess we are all like that with our good friends.

The Hucks live in Rome, Ga. We went to church yesterday and basically just let the kids play. We got to finally meet Matthew, the newest addition to the family, and he is just as cute as can be....a very happy baby.

So that was our first family trip on treatment, and everything went well. I got a little nervous at night just thinking about fevers and whatnot, but not enough to keep me awake.

Eli continues to do fantastically, as we all do.

Gotta run. I will try to catch everyone up more often. I have been really slack this month. But, as I have said in the past, that is a good thing because it means that we are not focused so much on the cancer.....just living our lives and enjoying it....

Thanks for checking in.

Maria

I am thankful for Easter and everything that it gives us!!!!

2008-03-11T16:06:00.002-05:00

Again, a late post....I see this as a good thing, it means that we have other things absorbing our lives other than Eli's leukemia. But I do like to keep everyone in "the loop" so to speak.

Our week last week was finally the week of potty training. Hindsight being 20/20 and all, maybe not the right time seeing as this week was his steroid week and he got his LP on Thursday. But it has all gone surprisingly well. Jennifer Boyle told me about an amazing traveling potty that fits under the seat of the car and completely closes...so we went right out and got one for the times when we just cannot make it home.

The LP was fine, but it was a long day at the clinic. Eli got his LP so we had to get the "sleepy medicine", he got the IV of Vincristine, the IV of Pentamadine, and he also got an IVIG treatment. This is the second of these that he has gotten and they seem to help with the colds and whatnot that are going around. So with all of that, we were there from 8-4. It was a long day, but that means that Eli doesn't need to be accessed again for a month. Just finger pokes...and Eli loves to get the finger pokes instead of the tubie. So it is a good thing!!!

Elis counts:

ANC 1568
Hemo 10.7
Platelets 210

Jacob was sick last week and missed school on Wed, Thurs, and Fri for a fever. He still has a cough, but I am just trying to limit his activity. We of course took him to the Ped on Wed and had a flu test done, but it was negative. I was beginning to think we were the unluckiest folks on the planet. We have a child with Leukemia and get the flu 3 times in one year?! Come on, give me a break. But we kept Jacob away from Eli as much as possible. Now that Eli's counts aren't really low we don't have to leave the house, but we still need to quarantine the sick child until the fever is gone. I cannot wait until cold and flu season is over!!! I think I may have said it before, but I feel I cannot say it enough....

Some of us are going to walk the Bridge Run this year....after 13 miles 10k really doesn't sound that daunting anymore.

Gotta Run, we have to find something for dinner.....

Thanks for checking in.

Maria

I am thankful that Jennifer Johnson's procedure went well and things are looking bright!!

2008-03-03T20:44:00.002-05:00

Yes, last week caught me off guard and I never posted. We had our ENT appt on Monday and had labs drawn then too, since we were already at the clinic.

The ENT, Dr. White, was really great. Eli's vocal cords are swollen, but he feels this is probably due to acid reflux caused by the chemo....yet another fun side effect!! He put Eli on prevacid for a while and will recheck in a couple of months or so. He thinks with the prevacid on board the problem will probably correct, but he will have to stay on it until he is finished with treatment. This was something we were hoping to avoid (one more med going into Eli on a regular basis) but now that we have seen that he is having difficulty we have no choice. The good thing is Dr. White said that the prevacid is not usually tough on little guys and there are no real side effects from it. Good.

Eli's ANC on Monday was 1138...yea. Back in the real world. WE are still keeping masks on him, but we are going out. All of his numbers were up. His platelets were 180, and his Hemoglobin was over 10.

On Thursday we go in for our LP and start Cycle 3..Which means we have officially been in Maint. for 6 months. It is amazing how fast time flies when you are having fun.....LOL!! NO really, I can't believe we have been in maintenance for that long. After cycle 12 we will only have to have an LP once every 3 months instead of the first and second months. That will be another welcome change to our regimen. After that....its 2010 here we come!! (Then we will have a HUGE party, I am already planning it in my head when I am at the clinic!!)

Thanks for checking in. I will post on Thursday and let you know how everything went.

Maria

I am thankful for the beautiful weather we had this weekend that allowed us to get outside and play!!!!

2008-02-22T13:56:00.002-05:00

Back to the grind...it has been hard after such a great weekend, but we are managing. Clinic yesterday was alright, there is a new nurse practitioner from DC working there. The good thing is that she is willing to do Eli's LPs on Thursdays instead of Wednesdays, so now we won't have to switch things around once a month.

Eli's counts are:

Platelets 118
Hemoglobin 9.1
ANC 523

The ANC isn't great, so we won't be doing much this weekend. With cold and flu season we really haven't done much without a mask, but now I think we will just stay close to home for a while. I am so glad his counts are down this weekend rather than last.

We have an appointment with an ENT on Monday and we will recheck his counts then. If his ANC falls below 500 we have to stop chemo until they come back up. The ENT appt is just to check his throat. Eli has been talking with a raspy voice for a long time now. It may just be one of those things that we chalk up to the chemo and don't worry about right now, but I want to be sure that nothing else is going on.

Please pray for Jennifer, a 10 year old that is going through radiation right now for a tumor that was found behind her eye. She and her family have been strong through all of this, but prayers are always appreciated!! Hang in there Kim and Jason, we are with you in spirit!!

Gotta run go pick up the boys from school. Thanks for checking in.

Maria

I am thankful for all of the friends we have made on this journey. It is so helpful to talk to those that are walking the same walk as we are....and a real comfort.

2008-02-19T22:30:00.002-05:00

Here are 2 of my favorite pics taken by the "paparazzi" Jane!!! I wanted to share them with everyone. We go to the clinic on Thursday for a normal checkup, then we have our LP next week. All is going well here right now. (Knock on wood.) Talk to you soon. Thanks for checking in.

Maria

2008-02-17T19:08:00.002-05:00

WE DID IT!!!!!!! 13.1 Miles done....

I am so proud of "Team Eli"...we had 19 women in total for the weekend and things could not have gone better. Everyone finished under 4 hours...even Annie (pregnant with baby #2) and Belle (Walking with a bum knee)...

The experience was amazing....it is such a feeling of accomplishment. We raised over $14,000 for LLS (most in SC) which was incredible. As I have said before, I am amazed that so many women from all different parts of my life were willing to do this with me. It took training, and it really took some perseverance to do this entire race.

I have never walked in a race like this before, and I don't know that I will do this regularly, but it was a blast.

Eli is the new "Honored Hero" for the Team in Training for the next season, which is a real honor. We are happy that we will be able to thank all those that are trying to raise money to end these terrible diseases!!!

I will post pics as soon as possible.

Maria

I am thankful that I have so much support and such wonderful friends. I will never be able to Thank you, my friends, enough for the past year. Your love and support have carried my family through what will probably be the one of most difficult years of our lives. I thank God for you every day!!!

2008-02-07T19:07:00.000-05:00

Well, it has been an interesting 24 hours here....haha. Last night Eli started running a fever. We got to 101.2 and called our fellow on call...of course, we were told to go to the ER. I took Eli and got there about 12:30 or so...we were there until 5am when they told us we could go home and the antibiotic would be given at clinic later (we had an 8am appt already). Well, then John calls me on my way home and says the hospital called and I needed to go back because I hadn't gotten the antibiotic?! We tried to call the hospital back, but couldn't, so I called the fellow again and asked her what I should do....she was VERY surprised that we were sent home, but she said since Eli's counts were good we could wait until our appt.

John took Eli to clinic while I slept...Thank you!! It was a long visit as he had to get his monthly Pentamadine and Vincristine on top of the new antibiotic. He will have an antibiotic here at home by IV that I will administer until Sat. (Didn't you know I am now an RN?) I have a feeling that Eli is just like Jacob in that he runs a little fever whenever he is fighting something off, but it has to be treated this was all of the time.

Anyway, Eli's numbers were really good this week:

ANC 3340
Hemo 10.1
Platelets 184

The ANC is really high, but they have told us with colds that sometimes happens. I don't mind really. We do start steroids today...yea!! This is our 5 day deal for the month.

Everyone else here is doing well. The flu hasn't claimed anyone else, thank goodness.

Eli's team has now raised over $14,000 thanks to the fundraising of Lisa Moore, who joined our team late. We go to MB next weekend.

Thanks for checking in.

Maria

I am thankful that we have such an amazing oncology team. They are always there, and always helpful. This has been a HUGE blessing for us all.

2008-02-02T20:37:00.000-05:00

Whew!! What a long week it has been!!!

Friday saw us moving....and Thursday Sam was sick....I took him into the Peds office just "to be sure" we weren't looking at anything but a silly virus, and he had the FLU!! Yes, for those of you that are wondering, we all got our flu shots this year (Except for Eli) The doc said it could be a strain that wasn't vaccinated for or he could have just gotten it through the vaccination...aren't we the lucky ones. So Thursday Sam stayed with me while Mom and Dad kept Eli and we switched off on Friday because Pam was here to take Eli to the Aquarium while we moved. So now my entire family including my Mom and Dad are on Tamiflu...yea. so far, so good.

The move really wasn't finished until Sunday afternoon, and John left out of town on business early Monday morning. I tried to get some done, but it really is difficult with three kids and all of the activities in the afternoons. We are getting there, but it is definitely taking longer than I thought it would.

Eli's clinic visit on Thursday was a quick "finger poke" Oh, how we love those. We were in and out and then we got to go to the aquarium and visit for a while. It was a good day. Eli's counts were:

ANC 1080 (We can go to the oyster roast this weekend for church...yea!!)
Hemoglobin 10.5
Platelets 187 still rising, good job.

So we are happy with those numbers. Things continue to go well...I really just want to get through this cold and flu season. It is hard worrying whenever we go out that I am exposing Eli to something that may cause us problems. We also have an appointment with an ENT on Feb 25 to discuss his voice. He has had a really "raspy" voice since all of this started, and we want an ENT to give us his opinion. It may just be something else we chalk up to the chemo that we can do nothing about, but we feel obligated to get it checked all the same.

On a different note...I LOVE my new home...I really think once we get settled this will be my dream home and then some. As I have told John, we never need to move again, this is IT.

Thanks for checking in.

Maria

I am thankful for my husband. Although we don't always see eye to eye on things, I realize when he is gone for a week how much I depend on him.

2008-01-23T20:25:00.000-05:00

Happy Wednesday!!

We went to the clinic today and had our MRI done. All was uneventful. The results from the MRI weren't back by the time we left, so if all is fine I imagine we will see the images on next Thursday when we visit. Eli's counts were:

ANC 800 (not,bad, but with cold and flu season we will try to stay close to home)
Hemoglobin 9.4
Platelets 93 (This came up from 74 last week, so I was happy to see that.)

Eli continues to amaze me with his bravery. Today he allowed Bobbi to access his port without even flinching. He simply sat on my lap and let her do it. The same with taking everything out at the end of the morning. WOW. He is such a trooper. Because we went to clinic today on Wed instead of our normal Thurs, we got to see lots of friends. Kinsey, Wade, and Zachary were there and Eli didn't want to go home!!

Report cards came out today and my man Jacob has straight A's again!!! He earned himself $70 for this feat, and I told him he can continue this as long as he keeps the grades up. Sam also did tremendously well, getting 2's and 3's across the board.

I registered Eli for preschool for next year. Although I know I am going to be freaking out come September, I also know how much he will love going to Christ Church Preschool and how everyone there will take such good care of him. I know that if I didn't have the folks there I would be keeping him home with me until Kindergarten.

The move continues, and feels never ending at this point. I did go in on Tuesday with a professional organizer and set up my kitchen. I know this sounds almost silly, but it was the best money I have ever spent. My kitchen is completely set up and ORGANIZED!!! What a way to start a life in our new home!! The movers are still set for Friday, so then things will go quicker.

Well, that is life here at the Crowley's this week. Thanks for checking in. Please continue to pray for the Secevich family as they try to adjust to life without their precious son, Luke.

Maria

I am thankful for my sister and brother-in-law's wonderful 20 years together. Way to go Judi and Paul!!

2008-01-17T16:21:00.000-05:00

Whew!!! We are finally done with the 5 days o'steroids. And boy did they bump his ANC. Our counts today were:

ANC 3500 (We have never seen it that high!!)
Platelets 74
Hemoglobin 9.4

His platelets are low again so we may have to adjust his chemo again next week. We have a MRI on Wednesday to check for the methotrexate (please pray that it turns out OK) I think that is the last time if it checks out.

Gotta run, it is rainy and my keyboard is sticking...so gotta run.

Maria

2008-01-14T15:11:00.000-05:00

Here is a picture of the new Crowley homestead!!! We will move in on Jan 25!!!

I am sorry I was so slack last week. Our appointment on Wednesday was a long one, we were there from 8-3. Everything went fine, I just wanted them to give him his Pentamadine IV while he was accessed, and they wanted to wait until he ate after his procedure.

The steroids are back!!! Yuck...it is really not much fun. The good thing is that we only have the 5 days then we are done.

We walked 10 miles last night...getting ready for the 13 to come soon. I know I will be able to do it, there is just a question of whether or not I will be able to get out of bed on Sunday Morning. This morning I really wasn't sore at all, so I think it will be manageable.

Here is a new video....this one includes us!!! It will make you cry...just warning you. The funny thing is, many of you can relate as "before I had a friend who had a kid with cancer...."

http://youtube.com/profile?user=PysankiKMHW

Things here continue to go well. Thanks for checking in.

Maria

I am thankful that we were able to buy a larger house where we will all be more comfortable.....

2008-01-07T12:28:00.000-05:00

This morning John and I went to the funeral of Luke Sechevich, a little three year old boy that we met in clinic. Luke had a very aggresive form of brain cancer. In the past few months he looked so great....unfortunately, his cancer came back. My heart was breaking for his mom, Dawn. I can only imagine the pain she is going through. Luke and Dawn were the first people we met at the clinic last year. I remember looking at Dawn and how strong she was and thinking that I could do it too.

I told John on the way home that I still am amazed at how little the docs seem to know about cancer....we are far from having this beat!!!

Please pray for this family as they adjust to life without their little boy.

Thanks for checking in.

Maria

I am thankful that I knew Luke and his beautiful smile!!!

2008-01-03T16:58:00.000-05:00

Merry Christmas and Happy New Year from the Crowley Boys!!

Well, unfortunately I was right. John took Eli to the ER at about 1am on the 28th. We were kept a couple of days to be sure the fever didn't come back and to give him some antibiotics and we came home the afternoon of the 30th. They did check Eli's immune globulin level and it was quite low, so he got an IV of that before we left the hospital. This is called IVIG and hopefully it will help him with the colds and whatnot around this time of year. The hospital stay was fortunately uneventful and we were home for New Year's. John was on vacation so the boys were taken care of, so things worked out. We didn't go to Atlanta because John and I both really want to avoid having to go to an unusual hospital...so we will try another trip there during Spring Break when cold and flu season is at an end.

We went to the clinic today and here were his counts:

ANC 680
Platelets 166
Hemoglobin 9.8

These numbers are decent. The ANC is low enough where we probably will try to avoid lots of people. I think this may be our routine for the remainder of the winter. Our onc. was pretty happy with the numbers, she said you want the ANC to be about this number because it means the meds are working. (This is what JOhn always says, but I would rather have the numbers high) Next week we will have our LP, so it will be a long day. We switched antibiotics at our request. The one he was put on in the hospital was starting to cause "gagging" issues, and John and I were both terrified that Eli would begin to vomit again. The meds have gone so well recently and we don't want to mess that up.

Today marks our one year "anniversary" of Eli battling this disease. It amazes me how much I have grown as a person and how my family has grown. I have been a witness (either by way of clinic or my discussion board) to no less than 10 children that have died.....I have watched my baby suffer and felt helpless, I have cried out to God to help my child and the others in this same position. I have been supported by incredible family and friends whose vocabularies now include "ANC, LP, and ALL". I have had people that we know and many that we don't praying for Eli and our entire family.....and.....we have gotten through it!!! I won't go as far as to say we are better for it, because I truly wouldn't wish this on my worst enemy, but we are getting through. We are at the one year mark and I have an energetic three year old that drives me nuts!!! I know that through suffering we are made into the people that we should be, and I see that in my family. My children are so much more understanding of anyone that looks "different" from them, as they are now used to a brother that walks around with a mask on his face!! Anyway, I guess this is my longwinded way of saying, Whew!! we are one year down, two and a half to go.....then a few more being anxious...but I am so thankful!!!

Thanks for checking in.

Maria

2007-12-28T21:21:00.000-05:00

I hope everyone had a Merry Christmas!!

Ours was great....way too many toys, and too much food!! We went to my mom and dad's on Christmas morning for brunch and then John's family came over for dinner. The boys got a playstation, so we really haven't seen much of them.

Unfortunately Christmas night found us in the ER. (Actually it was John and Eli) Eli had a fever of 101, which is the magic number for an evening of fun at MUSC. He was given and antibiotic and they came home at 6am or so. We went to the clinic on Wednesday morning for the onc to take a look and have labs done. Although Eli's ANC was around 300 on Tuesday night, they were 693 at the clinic on Wed morning. But that was good enough for us to go home again. Well, we thought we were in the clear when Eli hadn't run a fever since Thursday morning at around 3am, but tonight we are at 100.6 again. So we may be back downtown later.

We are hoping to go to Atlanta for the New Year to visit the Valdes family and the Hucks family, but who knows right now? We will have to wait until later to see if it is going to happen or not. The thing that stinks is because we thought it was a go, we mentioned it to the boys and they are WAY excited......uuuggghhhhh!!!! n That will teach me to keep my big mouth shut!!

WE will keep you posted....Thanks for checking in.

Maria

I am thankful that we had a wonderful Christmas and this fever didn't happen on Christmas Eve, that Eli was able to have a wonderful NORMAL Christmas Eve and morning!!

2007-12-23T14:18:00.001-05:00

Sorry I didn't update on Thursday. John took Eli to clinic and I took the boys roller skating (this time I did NOT put the skates on, although I really wanted to!!) Eli's counts are:

Hemoglobin 10.6 (a little low, but OK)
ANC 1586 This has come up...in time for Christmas
Platelets 54 (No wonder he has lots of bruises!)

The docs weren't really concerned about the platelets but at the same time Eli won't get any chemo until they come up. They said it was prob due to the steroids last week. I hate it when his platelets are low, I get so worried with him playing. So I will be a little bit of an overprotective mom this week. On the good note, it is nice not having to take so many meds every night!!

Eli's liver enzymes are still elevated, and we will continue to watch them...they are the result of the chemo he is being given daily, so I don't know really what we can do.....I guess that is where we trust the docs.

John and I decided that we haven't had enough excitement in our lives and we went and bought a new house!! It is right here on Daniel Island so nothing will really change other than we will have lots more room...the boys will each have thier own space and Eli even gets his own bathroom. (something I have been a little concerned aobut) We will close on Jan 14 and move in the following week. John and I are going to rent this home, not sell it, so we will be able to take our time to move.

Tomorrow is Christmas Eve and my boys are about to burst. John went to take Jacob and Sam to see a movie and Eli and I are hanging out. I really love this time of year.

We all got to attend church today as a family for the first time in a while. Eli was so excited to get to go!! He loves the children and the atmosphere. It is so fun to watch his expression when we are there. Because his counts are up I think we will all get to go tomorrow as well.

Please take a moment to pray for all of those who have lost a loved one this year. I cannot imagine the difficulty of the season when you are mourning. As I have said before, I have been exposed to the many, many children that are fighting for their lives with various cancers....how hard for a parent who has lost a child to suffer through Christmas without them. I know I will hug mine a little tighter this year!!!

I hope everyone has a great Christmas....

Thanks for checking in.

Maria

I am thankful for my "wonderful life"!!!!!

2007-12-13T17:17:00.000-05:00

Here is our family at the beach...we all went to take pics....what were we thinking? The funny thing is that Judi's family went too and took amazing pics....she has an 18 year old and a 13 year old...haha

Yesterday's clinic went well. Eli's counts are:

ANC 670
Hemoglobin 11.9
Platelets 168

Not bad, but could be better. We thought at first that we wouldn't be able to do the LP, but then realized the counts only have to be 750 to start maintentance, not continue it. So everything went on as planned. Eli had a "bronchial spasm" while he was sedated that the anesthesiologist wasn't too happy about, but everything worked out OK. We got to see Kinsey and Stacey Lewis...Kinsey was such a trooper. She was supposed to have an LP too, but her counts were too low.

The steroids started yesterday. I am glad we are getting them done before Christmas. Eli has been moody enough without them lately, and I think it is caused by the simple fact that he is a three year old boy. I have been putting off toilet training him but I think my time has run out and I need to get it started next week. The thought of having to take him to a public restrooms just gives me the willies, but we will have to manage through it.

Wanted to share this with you.....

JACOB'S PRAYER

As the balloons take to the sky
May we think of the children
Who are fighting the battles of their lives
Hoping for a cure
We hope with them
We send our blessings
And our prayers
To conquer the beast
May they win their battles
May their wishes be granted
May their dreams come true
And for their wishes
Their dreams
Their lives
We send this prayer

To the children
With their wishes granted
Their lives ahead of them
How wonderful it is
To have them on this earth today
We wish them luck
In their journeys ahead
May they be happy
Also pain and sorrow free
Let them have
Luck in their adventures
Let their families
Live on

For all the spirits
The beast has claimed
May they be in peace
For they have faced
The monster
Though not victorious
They put forth valiant efforts
May their families
Though they grieve
Know that their beloved
Are in a wonderful place
They are our heroes
They are our Angels
With this prayer
We send our love
May these Angels
Guide us to the cure

An amazing poem I got off of another blog site..it was a poem read at the funeral of Miles Levin, an amazing 18 year old that died recently of brain cancer after an incredible battle...balloons were released and this poem was read...really is beautiful.

Thanks for checking in. I hope everyone is enjoying this season. It really is magical with the kiddies....have fun!!

Maria

I am thankful for Eli and the smiles he gives me everyday.

2007-12-06T14:30:00.000-05:00

Today's visit to the clinic was uneventful. (I like those days) His labs were:

Platelets 232(Normal)
Hemoglobin 11.7 (Normal)
ANC 940 (Low but coming up a bit..)

I am pleased to see the ANC has come up some. The drs are wanting in between 1500 and 500, but I would like to see it on the higher side of that. Especially during cold and flu season!! He is still coughing, but Diane (the nurse practicioner) said his lungs sound great, so nothing to worry about there. He hasn't had any type of fever, so all is well.

Next week we go in on Wed for another LP with Methotrexate. We will do it again in January, then have another MRI to be sure nothing is going on. The dr wants to keep him on the anti seizure med indefinitely just as a precaution and I am fine with that. He feels that as long as Eli is getting the LP's it is a good thing to have.

WE are planning to go to Atlanta for New Years to visit friends. We haven't been on a trip all year and we think the boys will have a blast. John was thinking about going to the bowl game but I think it may be impossible to get tickets...if so, we will just have fun doing other things. Diane said she thought it was a great idea...

Jacob and Sam are doing great and driving me crazy, as usual. I sometimes wonder how they got so big, especially Jacob.

Things here are really starting to settle down and become "normal". It is a new normal for us, but one that we have really been waiting for.

Please pray for the Barber family as they deal with the loss of a dad and husband.

Thanks for checking in.

Maria

I am thankful that things are settling down for us as far as the chemo goes.....

2007-11-30T08:43:00.000-05:00

Yesterday's labs:

Hemoglobin 11.2 (Still normal, yea we don't need blood!)
Platelets 244 (Still normal, yea we don't need platelets)
ANC 566 (This has finally dropped, we will be staying out of public places)

Eli's ANC finally dropped, but too much for me....there is never a happy place. Part of it may be due to the fact that he has a cough. He also had some fluid in one of his ears...all of this could be causing the low ANC. We will just wait and see. They were going to increase his chemo again this week if the counts were still high, but now that is on hold.

Scary thing at clinic this morning. Eli has had a slight cough for a while, the docs actually thought it might be allergies or caused by his screaming at night aggravating his throat because there was nothing else to it. This has been going on for about 3 weeks. Well, this morning while he was getting his IV pentamadine, Eli started coughing and couldn't seem to stop. He then acted like he was really sleepy..then kinda fell asleep. Diane (The NP) put the pulse-ox on his finger and only got a reading of 94. Eli always runs a 99-100. So she called the respiratory therapist to give him a treatment of albuterol. He came in and gave him the treatment, then Eli perked right up. Diane thinks he may have just had a bronchial spasm...no big deal. There was neve a time where things were "critical" or even near it, but it still has me reminded that this is never normal. Anything can happen at any time. So now Eli is on an antibiotic as well as breathing treatments. It hasn't happened since then...so OK. Got to run... Pam is here to watch Eli. Thanks for checking in.

Maria

2007-11-19T19:41:00.001-05:00

We had a great weekend. The game was an exciting one, although a heartbreaker at the end. It was cold, but we came prepared and everything went OK. Sam even lasted until 12 midnight when we got back to the car (I was quite impressed here). Eli was great at my mom's...which I was concerned about. He took his medicine without incident and even slept in a big boy bed!!

NOW...since yesterday Eli has been quite a handful.. we know it is the steroids, but it is so hard. His sleep last night was fitful to say the least, and today has been about the same. The good thing is his last dose for this month is in the morning...yea!! A three year old on steroids is just not right!!

The Today Show is doing a thing on St. Jude's hospital today and I just happened to see it...I absolutely broke down sobbing. It just hits me sometimes that this is our world now. The little boy was talking about how he was almost done with treatment and showing the chemo room, etc. It was weird knowing exactly what he was talking about....and that made me wonder....how did we get here? Why are we in this world now? Why is it my son? What is going to happen? Then Eli looked at me and told me not to cry, which made me cry harder. I then composed myself and he and I went to the aquarium and had a great time. It is funny how it comes at the weird time...kinda like you are suprised you are living the life you are....

I will let everyone know how our clinic visit goes on Wednesday.

Thanks for checking in.

Maria

I am thankful for my mom and dad and all the help they have given me over the past year!!

2007-11-15T17:37:00.000-05:00

Todays labs were:

ANC 2220 (still higher than they want)
Platelets 253 (normal)
Hemoglobin 11.5 (normal0

The only thing a little concerning on the labs were that two of the liver indicators were high, this has never happened before. They aren't at critical levels or anything, but it is something we will have to watch. The methotrexate and 6-mp that he is on can cause liver damage, and we don't want that to happen. His bilirubin is still fine, as is the other indicator. So, as always, we will wait and see. I think I will press them more if the number is still elevated next week.

Eli got his Vincristine without any problems, it just took a while. HE was really bummed that he had to get his tubie today, no finger prick. All I could tell him to make him feel better was that he did NOT have to get the sleepy medicine. The thought still creeps into my mind how unfair it is that this is now our vernacular and that my baby has to endure so much. But as I have said again and again, we are blessed in so many ways I need to stop my griping.

We start the steroids tonight....for the next five days. It really didn't seem so bad last time, so hopefully we will have the same experience this time around. Please pray that we do. He has been doing so well.....

Thanks for checking in. I will try to check in again after the weekend. We go to clinic this week on Wednesday not Thursday due to Thanksgiving.

Maria

I am thankful for my family.

2007-11-12T11:11:00.000-05:00

I was meaning to post on Thursday, but our appointment at the clinic was so painless and quick, I think I just wanted it to seem like a "normal" week!! Anyway, here are the labs from Thursday:

Hemoglobin 12.1 (Normal)
Platelets 293 (Normal)
ANC 2366 (Good)

The ANC is still higher that they want it to be, so we increased his 6-MP that he takes every night. They want the ANC to stay between 1500-500. So we will see what the increase takes us to over the next month or so.

WE go in this Thursday for Vincristine and then take his 5 day steroid pulse, but we have a month off on the LP. This is nice since he had to be sedated twice last month because of the MRI. The sedation isn't the big deal, it is that he cannot eat or drink.

The garage sale went really well. We raised $556 for Team in Training!! I was really glad....and my house seems less junky now which is always a bonus.

Eli continues to do so well!! His mood has been great and he seems to feel good. He has a cough that I am a little worried about, but I will have them check it out on Thursday when we see the doctor. Because he is doing so well we only have to see the doctor every two weeks, the other two we will just go in to have labs drawn....YEa!!

We are going to go the the Clemson game with the older boys this weekend and Eli will stay with my mom. It should be good. If Clemson beats BC we will go to the ACC Championship....a very big deal!!

Jacob's class is doing a fundraiser with SunTrust Bank. They are going to create artwork and sell it at an "Open House" at the bank one night in January. The class was "adopted" by SunTrust for the year.....the lady who is in charge of the class for SunTrust had a granddaughter (15mos) that lost her battle with Leukemia last year. Isn't it amazing that the CLASS decided to give the money to the Leukemia and Lymphoma Society before they even knew this?! I sure think so....

Hope everyone has a great week. I will post on Thursday when we come home from the clinic.

Thanks for checking in.

Maria

I am thankful for everyone who helped and donated for the garage sale and all of the children that sold hot chocolate and muffins!!

2007-11-07T19:20:00.000-05:00

Here is an amazing analogy someone on my LLS Discussion board came up with to help people imagine what our "walk" with cancer is like. I wanted to share it with you:

Analogy

This journey is like a long cold winter evening with fresh snow on the ground. You and your family have to walk from your current home to a new one that you were told was constructed for you many miles away. Portions of the route you or other members of the family are familiar with, others portions, the family is not. The fresh blanket of snow covers the route so you are not completely comfortable with what you thought you knew at the beginning.

As the family begins the journey, the blasts of cold artic air forces everyone into buckling and zipping up, a numbing sensation begins as you attempt to adjust to the environment. The darkness of the night forces everyone to rely on other senses that they normally don't. We can't see very far so now we have to rely on hearing, touch, smell, and taste. We need to expose ears, hands, nose, and mouth, to the cold to help find the way. At the same time to much exposure could result in frostbite, gangrene, and eventually death. Not enough exposure and you will never reach the destination and eventually lead to exposure.

After the individuals in the family have adjusted to make this journey into a family endeavor great progress is made towards reaching the new house. At the same time complacency will lead to failure, a delicate balance of adjusting to each leg of the journey and the needs of the individuals without causing harm to the family takes on greater importance then you every imagined, problems with one member could easily have a domino effect.

As the journey progresses there will be times when whiteout conditions occur and the only option will be to make a snowcave and wait for the storm to pass. Other times the air will feel so crisp and clean that you just want to stop and go no further because you will try to convince yourself that this is good enough, no need to continue the journey someone will find us and give us a ride.

Knowing when to dig the snowcave or forcing ourselves to go on when we think we’ve traveled far enough is a delicate balance that needs to be assessed on a daily basis. There are no guarantees that the family will reach the house. Families that have traveled the route before illuminate a light at the end of the journey but you can not follow completely in their footsteps because the fresh snow has covered the tracks.

We are blessed that Eli has proven to be such an unexpected resilient navigator for our journey. Our immediate family is adjusting to this new life with only minor bumps in the road. Our extended family has provided the love and understanding that is needed now more then ever before, and finally for the doctors, patients, and other cancer families that are illuminating guidance beacons as we navigate through this 3 year extended winter night.

Thanks for checking in.

Maria

2007-11-04T20:50:00.000-05:00

What an amazing weekend for the Crowleys!!!

Jacob got an award for making the "A" Honor Roll....we are so proud of him. He also got perfect attendance for the 9 weeks.

Halloween was a blast, as I said before. The picture of the boys pretty much says it all....do you think they have an attitude or what?!

Then today, we celebrated Eli's 3rd birthday....Amazing. It is so great to see how well he is doing now....I find myself just overjoyed. He had a pirate birthday and we ordered a cake from Julia Stoner of Cookie Obsession....she did a fantastic job and the cake not only looked incredible, but tasted great!!

The weather was 75 and sunny...again, beautiful. So the kids played outside and the grownups talked inside. It almost seemed as though God was looking down, smiling, and saying "Eli, you deserve it." I know things probably won't stay this good for the entire next 3 years....but it is weekends like this that you store for those times when you need them. Seeing Eli so healthy and happy....as you can tell, I am smiling as I write this and I can't stop!!

Hope everyone had a good weekend. Thanks for checking in.

Maria

I am thankful for our amazing little boy and soooo thankful that we made it through this year and things are going so well.

2007-11-01T10:14:00.000-05:00

Counts yesterday were:

Hemoglobin 10.4
Platelet 344
ANC 2290

So we are still in a good range. The MRI went off well yesterday morning. It was early (8:20) so that meant that we didn't have long to wait until we were able to eat...always a bonus. We should have the results later today. My nervousness about that has subsided quite a bit, it is definitely something that is completely out of my hands...so I will deal with it when it comes.

I am assuming that with Eli's counts being as high as they have been that we will increase his dosage of the chemo in the next few weeks. Hopefully that won't really bring him down. I am not sure if they do that in tiny incriments or take a huge step and then scale back if need be. Again, there is so much that the docs don't seem to know!!

Halloween was such a joy!! I will post a pic as soon as I download off of my camera. As my neighbor Catherine said, it was amazing to see Eli running around with everyone having such a great time. We went with all of the other kids, then we took the three small guys on a shorter route and then home. It was about perfect. I think the holidays are going to be a little more emotional for me this year....first I think about where we were this time last year (without knowing anything about ALL, cancer, or the like)...then I think about where we were in January...I am truly blessed!!!

Please pray for the family of Tia Newsome. Tia was the wife of a friend of John's from high school. She died yesterday of colon cancer and leaves behind three small boys..what a tough time for this family. May God please grant them the peace that we know only He can give....

Also pray for the family of my Godfather, Pablo. He died of an apparent heart attack this past week. My dad has gone to the DR for the funeral. It was very unexpected and I know the family is grieving.

Thanks for checking in. I will let you know about the MRI as soon as I know.

Maria

I am thankful that we were able to enjoy Halloween!!!!

2007-10-25T10:17:00.000-05:00

Our counts today:

Hemoglobin 10.4 (Normal 11.0-15.0)
Platelets 337 (NOrmal 140-440)
ANC 4.890 (NOrmal 2.000-6.600) WOWWOWOWOWOWOWOWOW!!!

With everything going so well (knock,knock) the dr said that we can come in for labs weekly, but maybe just do exams every other week. This is sweet because it means we literally will go in, get a finger poke, and then leave. They will call me with the results later in the day....then we can go to the aquarium if his counts are good!!

I was so proud of Eli this morning. He went with Ms. Bobby by himself and told me not to come...he got his finger poke without so much as a peep, then he went back to the playroom to play...what a big boy!!!

Everything continues to move along. Our MRI is on Wednesday morning. Bobby said she would be there early to access him. The nurse in MRI said she felt confident doing it, but I really only trust the clinic nurses and the nurses on 7B. Although they may be confident, that doesn't mean they are good at accessing the port of a 3-year-old while he screams to be "let go" (he hates to be held down). So that is a huge relief and an answer to a prayer.

Please pray for the family of Chase, a little boy that has been recently diagnosed with neuroblastoma. I know what a hard time it is at first....please let the Lord help them through.

It is yucky rainy here, but I actually enjoy those "down" days with the boys.

Thanks for checking in....

Maria

I am thankful that all of this seems to be getting easier (or am I just adjusting....or both) Anyway...I give thanks all the same!!!

2007-10-24T17:13:00.000-05:00

I wanted to share a couple of pictures from the weekend. Aren't my boys adorable? Don't you love the hair with the costume?????

2007-10-23T21:51:00.000-05:00

Eli's Team has reached 50% of our goal of $7000!! I am so thrilled...thanks to everyone who has donated. If you haven't donated and you really want to....go to

www.active.com/donate/tntsc/elisteam

As I sit here this evening all I can really think about is how very fortunate we are. I know that sounds a little silly when you consider what we are going through with Eli, but unfortunately I am in this "cancer world" now and I see what is going on....a little boy in California whose Mom is doing amazing things without chemo with prayer and other things (the child had horrible complications due to the chemo)...a three year old in Texas who was diagnosed about the same time as Eli and is having bone issues already as a result of treatment (between the steroids and chemo some kids have thinning bones) His mom is really wrestling with what the future will hold in terms of complications due to the treatment....and finally, a little two year old girl in NC from South America who has relapsed a second and final time.....her mother is having the hardest of times....and these are just the ones that I know about. WE are soooo fortunate. I know that we WILL have more difficult times ahead with all of this, but hopefully I will be able to gain strenghth from the now.

Anyway, I didn't write all of this to bring you down...actually the opposite if you can believe that....take stock in what you have today....give your kids that extra hug even if you are in a hurry. Take time to read that story...AGAIN...children are such a gift from God to bring such Joy into our lives....take the time to take it from them.....

Sorry so sappy....John is out of town so I have lots of time to think at night!!LOL!!

Thursday is our clinic day...our weekend was great...weather is great here....

Thanks for checking in.

Maria

I am thankful for my kids...

2007-10-19T10:09:00.000-05:00

Thank you God!!!!! WE ARE HOME...NO PROBLEMS!!!!

I cannot begin to say how relieved I am...Eli got his lumbar puncture with methotrexate yesterday around 11am, and has had no problems since. In fact, we were running up and down the halls this morning with me chasing him!! The nurses got a really big kick out of it, but I didn't (since I hadn't gotten dressed yet, and was in my pj bottoms and a tshirt haha)

Our MRI is on Halloween to be sure no more lesions have appeared or that the current ones have not changed...but based on this experience I have complete faith that all will be fine.

OH...labs were:

ANC 2800
Hemoglobin 10.7
Platelets 377

All really good numbers, although I have a feeling when we hit our 6week mark we will be increasing the dose of chemo. They want his ANC to be between 500-1500. Eli also got Vincristine yesterday and we started the dreaded 5 day pulse of steroids. But I have a huge smile on myself and my heart is content....

Thank you for all of your thoughts and prayers. As I have said, throughout this entire experience Eli and our entire family has been so lifted up by your prayers..it is amazing the strength that we get from that.....Thanks.

Thanks for checking in. Have a fantastic weekend!! (JOhn will be camping with the older boys this weekend)

Maria

I am sooooo thankful that the Eli handled the intrathecal methotrexate with no problems!!!!!!

2007-10-16T20:48:00.000-05:00

I realized that I haven't put a picture on here lately...I am going to take my camera to the hospital on Thursday and take some pics. I never really think about taking pictures there, but I am coming to realize that this is such a big part of our lives this year....no pictures of it would really not be realistic and I would love to show them to Eli when he is 25 and remind him of what we went through as a family.

Every now and then I have to stop what I am doing and really look at Eli...this kid is so amazing!!! He has such a wonderful spirit. I think about what he has gone through this year and it just brings me to my knees. Thank you God for allowing him to stay the same wonderful kid throughout all of this!!!

Please keep us in your prayers Thursday and Friday. As the time gets closer,I find myself really getting nervous. It was such an awful time for us in January...I really don't want to go back there. I keep reminding myself..."Be strong and courageous....." but sometimes it is better said than done.

I am going to my Bible Study tomorrow morning. This is something I have soooo missed this year, and Pam Hawver has been sitting with Eli now on Wednesday mornings so I can go. I really feel the support and strength when I am with these women, and it will certainly come in handy this week....

I will update on Friday when we get home.

Thanks for checking in.

Maria

I am thankful for Eli and the wonderful love that he gives me.

2007-10-12T12:23:00.000-05:00

Eli's counts yesterday:

WBC 6.750 (Normal 5.000-11.000) In the NORMAL RANGE
Hemoglobin 11.1 (Normal 11.0-15.0) NORMAL
Platelets 441 (Normal 140-440) NORMAL
ANC 4000 WOW!! It has NEVER been this high!!

So of course John says,"The ANC is too high, it means the meds aren't working"...which would be true if it were for a LONG period of time. And they won't let it stay this high long, they will increase the chemo. But I will take it for a week. I also need to ask about the cold. I know that infections bring the ANC down, so I don't understand how he can have such a high ANC with a cold. But again, I will take it!!

Our clinic visit was really good. We had to wait a while to see the doctor, but that was alright. Eli just got his finger poke...so he was really full of himself.

The weather here is absolutely beautiful....in the 70's and sunny. Lots of outside time for us. John is going to the nascar race tomorrow so the boys and I will go to Park DAy here on the island and have some fun.

Th big Methotrexate day is next Thursday. They will do his LP with the Methotrexate and then we will be admitted for observation overnight. Please pray for PEACE for me and for no seizures. The docs really seem to think that was a one time deal, but I am very worried. Eli will then have a follow up MRI on Oct 31 to see what his brain looks like.

Please pray for Zachary, a little boy with ALL who is having a hard time right now. His mom is dealing with him as well as a younger sister, Jaden while Dad is overseas with the military. Please ask God to cover them and protect him and give her some rest and peace.

Thanks for checking in.

Maria

I am thankful for all of the wonderful friends and family that are walking the half marathon and helping me raise money for LLS!! Go ELISTEAM!!!

2007-10-09T18:48:00.000-05:00

Nothing much to report today, Thank You God!!

Eli is still doing so well, it is hard to believe he is sick sometimes. We went to the beach on Sunday (something Eli has wanted to do for months now) and everyone had a blast. Unfortunately, we forgot the camera.

My women's retreat went really well. It is nice to get to know folks who have already walked this long road. And no matter how bad you think your story is, there is always someone who has had it much harder. It really makes you count your blessings. The one thing that really struck me is how many of these kids are misdiagnosed. It is almost as though cancer is the last thing anyone expects, even the doctors.

We go back to the clinic on Thursday. Eli just has to have a finger poke....he is really excited about that!! I am hoping his counts haven't dropped too much, he has a little cold. I think both of us have enjoyed having a "normal" life and being able to get out more. Just in case I am taking him to the aquarium in the morning.....

Thanks for checking in...I will let you know how Thursday goes.

Maria

I am thankful that we live in such a beautiful city and area. It is so fun to go out walking and look at the marsh and the beach.....AHHHHHHH!

2007-10-04T18:03:00.000-05:00

Eli's counts today:

ANC 1568 (normal 2000-6600+)
Hemoglobin 10.1 (Normal 11-15)
Platelets 366 (Normal 140-440)

We have had such a good week it has felt as though we are on vacation!! Eli has been doing fine, and doing all two-year-old stuff. The older boys are playing soccer and football and having a good time.

Our clinic visit today was quick. We went in at 9 and were out by 11:30. It was good. He got the Pentamadine, the profilactic (sp?) antibiotic and bloodwork and that was it!! The doc said that we will give him the Methotrexate at the next LP and he will be admitted overnight (this was for John and my benefit...after the last siezure we didn't want to do that at home) then we will do another MRI a couple of weeks later and see what his nogin looks like....if all looks good, we will continue with the Methotrexate for the remainder af treatment.

I am going on a girls night with some other moms from Courageous Kidz (a cancer help group) this weekend on Sat night. I am looking forward to it...it is nice talking and getting to know other women that are going through this. It is at a beach house on IOP..I will let you know how it went.

Take a look at the Team In Training website....thanks to all of those that have donated money....as I have said, I feel we can make a difference by supporting the research to end these cancers!!

Please pray for the Nash family and the Ward family. Both lost thier little girls to cancer this weekend, I can only imagine the pain they are going through. Please pray that God give them some peace during this most difficult time.

Thanks for checking in....it is nice not to have much to post....have a great weekend.

Maria

I am thankful that we are into maintenance and doing well.

2007-09-28T14:33:00.000-05:00

Eli is in the paper....here is the link...

http://www.thedanielislandnews.com/artman/publish/article_2628.php

Maria

2007-09-27T14:33:00.000-05:00

Nothing new today....we went to the aquarium and had a good time.

Beth Bush did an amazing job in the Daniel Island News with the article on Eli!!! Thank you Beth!! If you can, run and pick up a copy. I hope it helps people think about Childhood Cancer a little more, and maybe even get more people involved.

Here are some pics from the our hospital stay. My favorite is the one of the boys together....Eli has such a good time with his brothers, no matter where he is!!! I thought it would be appropriate to include a pic of Eli with one of his favorite nurses, Niki, who I have mentioned here before. The last is where Eli fell fast asleep one day while we were on a walk!!!

2007-09-26T17:17:00.000-05:00

Eli's counts today were:

ANC 2047 (Yea, in the normal range for a while!!)
Hemoglobin 10.4
Platelets 447

The MRI went fine this morning. I went in early so the "experts" in the clinic could access his port before the MRI. Then we went down to have the scan done, came back upstairs to see the dr, and went home. Pretty uneventful day. The results from the MRI will probably be in tomorrow, but it really isn't something I am too worried about right now. The dr said we could discontinue 2 of Eli's meds, so that is a good thing.

I promised Eli we could go to the beach this weekend. He has been wanting to go, but I wanted to wait until those counts came up a bit. The dr said it would be fine. John is planning to watch the Clemson game on Sat afternoon, so maybe we can go after that. I really want to get out and do as much as we can. It has been so long since we got to enjoy the world.....

I went by 7B to pick up our phone charger that was left in the haste to leave the hospital, and I was talking to one of our favorite nurses. She said she has been doing this for a while and she can't remember it being so hard--with new diagnoses and kids not doing well during treatment. (There have been more than a few deaths this summer) Please pray for these nurses, and those that work in the clinic as well. As I have said before, these are the women that take care of these kids day in and day out. It is so hard for them, and as a parent I know there is no way I could not have made it without them being there for me and Eli. Please pray that God give them the strength that they need during this rough time and give them the vision to see the difference that they are making in people's lives every day.

I think we will go to the aquarium tomorrow. Since we got our clinic visit out of the way we are home free until Thursday of next week...

Thanks for checking in...

Maria

I am thankful for all oncology nurses everywhere and the wonderful job that they do.

2007-09-24T21:29:00.000-05:00

The weekend went pretty well...our marathon Saturday was long. John ended up going to all of the games, and I went home with Eli. The steroids he is on are definitely effecting his mood. I was hoping that they wouldn't effect him until day 4 or 5, but he has been really clingy since day 2. But today is the last day of steroids for this month...yea!! Now we just have to get used to how these moods and stuff go on a month-in, month-out basis.

We will go into the hospital on Wednesday for another MRI. They will take a look at the brain lesions and see if there has been any change. This will also be our baseline as we try the Intrathecal Methotrexate at his next Lumbar Puncture next month. As I have said before, this is a really good drug and we haven't given it to him in the spine(we have substituted another drug) since he seized on Jan 13...so we will try it again now that he isn't on such a tough chemo regimen and see what happens.

John and I have been married 13 years today...WOW. He got his mom to come watch the boys tonight and we went out to Sienna for a nice dinner...YUM.

Thanks for checking in. I will let you know how the MRI goes.

Maria

I am thankful for my husband and my marriage. I don't know how someone would go through this without a supportive and wonderful partner...