Counts:

ANC 860 (normal 2200-6000+)
WBC 3700 (5000-11000)
Platelets 357 (140-440)
Hemoglobin 12.8 (11.0-15.0)

Yes, I am late in writing this...sorry. Yesterday went about as well as it could have, but it was still a VERY long day. All in all we were there from 8-3:30. The timing wasn't that bad, the bad thing was that Eli was NPO (NO food or drink) from 9pm on Tuesday night until he woke up from his LP at around 1pm Wed. That is no fun for anyone, especially a two year old. But, as usual he was a trooper (an extremely crabby trooper, but a trooper nonetheless!)

Eli's blood looks good, although his ANC was much lower than I thought it would be because he hasn't gotten chemo in a week...but the docs weren't the least bit concerned and the numbers were high enough (over 750) for him to begin treatment.

The LP went off without any problems, they said everything looked fine. Then we got 2 chemos and our monthly antibiotic pentamadine. Then we got to go home. Eli also started his steroids last night, so we will see how that goes. When we were in the hospital they gave him the liquid steroids and they tasted horrible...so it was hard to take them. The doc said we could try the pills this time and that has gone much better. We simply crush them up and mix in the bubble gum snow cone syrup and he doesn't complain a bit....YEA!!

I got to go to a little get together my bible study had last night. One of our members is moving to Memphis. Jean has been such a wonderful example of really practicing what you preach. She is an amazing woman, with an amazing knowledge of the bible...we will really miss her. I had a really good time seeing everyone again..but it was a little bit bittersweet at the same time. I really miss being involved at church, especially with this group of women. I know, "do not be discouraged"!!! When we come out of this in 2010 with Eli healthy again it will be worth it....I would do it 10 times over to have a healthy boy!!! Enough of my pity party....it is a "different" summer for us and I think I am still adjusting to all of it.

Our church is having a blood drive on July 23 in "honor" of Eli. Please come out and give a pint. I am also trying to get the bone marrow registry folks there to register people. All it takes is a swab and you are done. We are looking for a sponsor that would be willing to pay $25 per person for the registry. The Red Cross is paying half, but we need a sponsor the pay the other half. If I can't make this happen for July, I will try for the fall. If I have learned nothing from the past 6 months it is the importance of giving blood products and registering your marrow!!!!

I hope everyone has a good weekend.

Livestrong,

Maria

Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go. - Joshua 1:9

It never ceases to amaze me how much I learn from, and through, my children. Believe it or not, this was the bible verse that my kids concentrated on all week during Summer Fun Week at church. They even sang a song about it!!!! Those that know me know that I do NOT believe in mere coincidences.....I believe everything is driven by God for our benefit we just have to be open to see it...and this is no exception. Although things have been going really well the past couple of months and we have had SO much to be thankful for, I still find myself so scared of what the future holds for Eli and our family. Then I begin to get discouraged at how long this is going to take and how lonely it is..... Then this week came...and I had to listen to this over, over, and over again. (Those of you with small kids know that I am not exagerating here :) In the back of my mind I heard softly..."do you get it now?" And the answer is that I think that slowly I am beginning to!!!

I just had to share that with ya'll. Have a good week and I will let everyone know how Wednesday goes.

Maria

ANC 1156 (normal 2,000-6600)
Plate 286 (normal 140-440)
Hemoglobin 11.7 (11.0-15.0)

Another clinic day with good counts. Today we were able to get away with just a finger poke. Eli is such a big boy when it comes to those. He fusses a little, but then it is over and he is just fine. Because we were so quick at clinic we went ahead and had an echocardiagram and and EKG. They need baseline pics in case the steroids he starts on next week affect his heart. That wasn't much fun, especially the "stickies" for the EKG. They don't hurt at all, but Eli hates anything like that. But it was really efficient for MUSC and we were done in about an hour.

I am getting a little scared of starting on these steroids. Apparently this is the only place in the entire treatment where all of the children have the same (bad) reactions to them. There are no parents that say that this didn't have a negative impact on the way the children act. That coupled with the fact that Eli is a two year old with regular two year old stuff and you have "SAVAGE SPAWN"!!! So please pray next week for this.

Eli continues to amaze me with his amazing strength and adaptability. I wish sometimes he was able to give me some!!

Love to all of you..I probably won't write this week unless something comes up....this is our one week completely free of chemo in a while and for a while....

Maria

Please continue to pray for Charlie and Elijah, two little boys trying to fight this beast!!

The good counts continue...yesterday's clinic visit was:

ANC 1920 Normal 2000-6600
Platelets 391 Normal 140-440
Hemoglobin 10.5 Normal 11.0-15.0

So we are enjoying another good week. I took all of the boys with me to clinic yesterday and it turned out fine. Jacob and Sam basically played on the game system there for a while. Eli only needed a finger poke, so things went well on that side.

I asked the Dr about the next phase, and she told me that the first month shouldn't be all that bad count wise....but with the steroids he will probably be a little bit difficult (to say the least!!) Then the second month we will be down on counts.

Eli's toe still looks kinda angry, but it does seem to be improving. John turned his entire foot brown when he soaked it in iodine which caused me to totally freak out until I realized why it was that color. I truly thought his entire foot was discolored due to infection or something!!

Thanks for checking in....Prayers for Eli's toe to continue to improve.

Our last dose of high dose methotrexate is over!!! Yea!!! John hurried the nurses up and they were able to go home early Saturday morning. Eli handled everything well....but it was a challenge. He never wanted to play in the "new" little playroom, and it is not much fun sitting in the room watching TV. He got really crabby, and that is tough. But we are finished with the hospital stays for methotrexate and I am thankful that it went much better overall then I could have ever expected.

We now have about 3 weeks of fairly easy stuff. We will continue to take the chemo 6-mp at home, but nothing else. The last week we won't have any chemo at all. Then we start the dreaded "Delayed Intensification". Eli's left toe is still looking angry, I have a feeling this will be an ongoing battle for our entire treatment. The podiatrist did not come by while we were in the hospital, and they have told us that they really don't like working on small children. So, we will continue to soak in betadine and they have called in an antibiotic. We go back to the clinic on Wednesday, but it will just be a finger poke and then we are done.

The older boys don't have any camp this week. (This is the one week all summer.) So, Sam learned how to ride his bike without training wheels today....he did such a fantastic job, I was sooooo proud. Cher is going to take them to the movies tomorrow while I watch the little guys. I don't think I thought about how much we relied on the pool in the summer until now that we can't go...I was wanting to take them to the beach one evening, but with Eli's toe looking bad I am not quite comfortable.

Thanks for checking in....Please pray that we get no mouthsores, that his counts stay up, and that Eli continues to feel good.

I am officially B-O-R-E-D!!!! We have been sitting in the room all day....At least we both took a couple of naps (after waking up at 4am) The blessing is that Eli has eaten normally and hasn't gotten sick at all. He is now done with the "big yellow bag" of methotrexate and now we will wait for it to clear his system.

John is coming in the morning so I can go to my niece, Lauren's, graduation. That's right, my little niece is graduating from high school tomorrow....how old do you feel now? It should be fun. Then I will come back here for a while before picking the boys up at camp. They have had such a good week at the tennis center. The camp basically lets them play all day long....just what the doctor ordered.

Now we just hope for no mouth sores. We didn't get ANY the last round..yea!! I hope this time is the same. Eli is now just 1 lb shy of his 31lb January weight. We are going to wean him off of the appetite stimulant that we have had him on. It has worked really well for us, but beginning in 3 weeks he will be given steroids every day for 21 days....there will be no need for a stimulant, he will be eating everything in sight!!!!

Thanks for checking in.....we will be hopefully going home on Sat. morning again!!!

Great news...the MRI showed no changes in the lesions!!! This means that Eli can continue to get methotrexate during treatment. The Dr said he will also want to try to give him the IT methotrexate (in the spine) when he gets to maintanance. I will worry about that when the time comes.

We are here in the hospital again. Today has gone really well. We got here about 9:30 because I needed to drop the boys off at camp, and we had a room by 2:00. The chemo actually got started at 6:00!!! So now it is a little after 9pm and Eli is sleeping. The atrium playroom is still closed which is a bummer, but I am definitely counting my blessings here.

His counts are: ANC 1290, Hemoglobin 11.0 and platelets 321. All great numbers. His big toe is looking a little bit angry, we just cannot get past this ingrown toenail thing. I worry that when his counts do drop he will get an infection. The nurse practicioner said she would see if we could see a podiatrist while we are here, I will have to ask the dr tomorrow.

There is a family here that is new to all of this (you can tell by the fact that the child still has all of her hair and the mom has that "deer in headlights" look about her) They are here waiting for the little girls ANC to go up so she can be released. As I looked at her, all I could think was how in the past 6 months our lives have so drastically changed and how this (cancer) has become our lives. I used to be so scared of hospitals, hated to even visit, and now look at me. For the most part, I am simply astounded by the amazing grace and strength that we have been given to help us get through this. Alot of that has come through all of you...thanks. I know we still have a looong way to go(ABOUT 2YRS 10MO), but it is amazing how far we have come already.

Thanks for checking in, and thanks for your prayers.