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

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

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??????

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

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

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

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.

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!!

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

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...

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

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

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!!

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!!!

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.

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!!

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 !!

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!!!!

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

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

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.