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.

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!!!

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...

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!!!!

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...

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.

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

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.

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!!!

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.

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!!

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.

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...

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.

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!!

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...

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.

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!!

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.

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

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.

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.

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!!!

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.

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.....

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....

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...

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.

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......

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!!!

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!!

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.

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!!!

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!!!

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!!!

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!!

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

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....

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?!)