STILL in the hospital, sigh. Eli's counts today were:

ANC 10
Platelets 17
Hemoglobin 9.2

These numbers are way, way low....however, they have held steady for the past couple of days. (The ANC has nowhere to go but up.) Eli's pain is almost all gone except for when he poops. As it goes with Eli, the doctors are stumped and really have no idea why this is. We have had an x-ray, ultrasound, and cultures of his stool. All with no answers. But we do know what it is NOT, so that is some reassurance.

Eli is basically just really bored.....and I really don't blame him because I am too. John is there now for the weekend. I told our dr that we were going to have to "renegotiate" this 200 ANC number if his numbers aren't up by next week. They are closing the playroom on Tues, Wed, and Thurs of next week and I am NOT spending week #3 in the hospital without the playroom. I will bust him out of there in the dark of night if I have too....

It has really been impressed on me, though, how blessed and fortunate we are. There is a beautiful little girl, Malaysia, that is two doors down from us at the hospital. Her grandmother and I spoke the last time we were in about our kids and how tough they were. She told me they had been there for 9 months earlier ( and I fussed about 6 weeks) and Malaysia had relapsed. Well this week all of their family and friends were coming by because Malaysia is dying. And here I would walk by the room with Eli in my arms smiling or talking to me....wow. I couldn't sleep last night thinking about it....and trying to figure out why God has opened my eyes to all of this.....there has to be a reason somewhere. I never realized how much I put my "blinders on" to some of this stuff before. I am not one (or wasn't one) for hospitals, so I pretty much avoided them at all cost. I didn't want to look at sick kids because my kids were healthy and it made me sad....Now it is although it is all I see and think about....I can't imagine what that family is going through.....and I don't want to.....Again, there has to be a reason for all of this somewhere...I just hope He shows it to me soon.

Sorry this has gotten so deep. I have had way too much time on my hands...Thanks for checking in, and thanks for your prayers. Please pray for Malaysia's family that they will find comfort during this time.

Maria

I am thankful for the wonderful nurses of 7B. They willingly go through what many of us try to avoid, and make things bearable for those of us going through this nightmare with our children. They are amazing, strong women that I admire and appreciate with all of my heart.

And we are......STILL in the hospital!!! Unfortunately, it looks like we will be here for a while. Eli's blood counts have hit rock bottom and we aren't sure when they will begin to rise again. Today his ANC was a whopping 0...I guess the good thing is that we have nowhere to go but up now, but it is just that we don't know how long it will take. Our Onc right now is Dr. Hudspeth, the new doc from NY, and she said her "rule of thumb" is an ANC of at least 200 and rising.....so we will wait.

The pain has gotten better today, which is a relief. Unfortunately, we also gave him the chemo that we suspect is the problem again today....so we will see a little later in the week if the pain comes back. We think it will. We have started him on another med, Nuerontin, that is supposed to help with this nerve pain, but it takes 7-10 days to become effective. So we will see.

We are in good spirits. Eli has been able to play in the atrium every day and we go outside at least once a day too.

MUSC decided to get rid of the wireless service here, so the new computer we bought for our stays is useless...boy that has made me mad. Something about it "interfering" with aquipment. What I want to know is...is that really true or is it a tale? Kinda like when you are on an airplane..will answering your phone really bring the plane down? If it did would they really let you carry them on the plane in the firstplace? Just a thought as I sit on the computer in the nurses station instead of my brand new lap top in my room......rrrrrr!!!

Thanks for checking in. Thanks for the phone calls...and thanks for the prayers.

Maria

I am thankful that Eli's pain has lessened.......I am SOOOOOO thankful that TODAY was our last treatment in DELAYED INTENSIFICATION and now we will move (hopefully) to some easier chemo and easier days.......

I really meant to go back and write a little bit after posting that poem, but never got around to it...sorry. I guess what I wanted to say is what an amazing soldier Eli has been, and continues to be, through all of this....

Well, we are back in the "big house". great. Eli ran a temp of 100.5 on Wednesday night, so in we went. His counts at that time were a whopping 30, and now they are a huge 10. His fever has continued kinda on and off, but never spiking high. The fever could very well just be caused by his low counts, but he is still on IV antibiotics just in case. You have to be really careful when the kids are this far down in counts, any infection can easily lead to sepsis.....which is something we really want to avoid.

The thing that really stinks is Eli seems to be having some pretty serious side effects from the Vincristine chemo that he has been getting. He has been having some pretty severe pain. Most of it seems to be in his groin area.....but I think his legs are hurting him pretty good too. What this chemo sometimes does is effect the nerve endings causing pain. Eli will get his fourth dose in four weeks on Monday, which is alot. We are hoping that after he is finished with this delayed intensification and he is getting it less that it won't be an issue. He is on morphine around the clock now to help lessen the pain, but it is still there. It is so difficult to see your baby hurting. I would have given every thing I had to change places with him.....I really hate this!!!

Again, we are at the mercy of one of those "wonder drugs" of chemo. This stuff really works, so you don't have a choice but to continue giving it to him and hope you can make him comfortable.

I am going to try to fix the computer John and I bought for our hospital trips tonight. For some reason, it won't connect to the wireless at the hospital. I hate not being in touch.....

John and I were planning on going to Hootie tonight...but as Murphy's Law goes around here....here we are....but we are still one step closer to being on a lesser chemo schedule, which is great. ( I am really trying to stay positive here, but as you can tell I am tired and a little bit in the "why me mode)

Thanks for checking in. Please pray that the pain Eli is feeling goes away, or at least lessens.

Maria

I am thankful that Eli has the treatment that he does for this disease and we do have a chance to fight with him....I know this was not possible with leukemia 25 years ago....we are blessed by this.

THE LITTLEST SOLDIERS BY Cheryl Jagannathan

The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only children
Living in this hell.

So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars.

For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our life is our REWARD!

Today's counts:

Hemoglobin 7.9 (Normal 11.0-15.0) We got a unit of blood....
Platelets 6 (Normal 140-440) SO LOW!!! We got platelets.....
ANC 30 (Normal 2000-6600+) We won't be leaving the house any time soon....

It was a long day at clinic today, but pretty uneventful. We got there a little after 8am and left around 4:30. The blood takes 3 hours to administer, and we had to wait an hour after Eli got his PEG shots in his legs in case of reaction. The really great thing is....we only have one more week on Delayed Intensification, then we move on the Long Term Maintenance!!!! (Because his counts are so very low, there will probably be a couple of weeks in between while we wait for his marrow to recover) So things are moving along.

The older boys started school today. Jacob is in the third grade and Sam is in Kindergarten. They were both so cute this morning as I took them to school. I cannot believe they are getting so big....and here I am wishing away Eli's time, just wanting to get to the end of treatment. I really need to stop doing that. Before I know it he will be in Kindergarten himself, done with treatment, and I will wonder where did the time go??????

Thanks for checking in.

Maria

I am thankful for no fevers, and pray that it keeps up. I am thankful for my adorable older boys.

Yesterday's counts were:

ANC 173 (This is actually higher than we thought it would be.)
Hemoglobin 8.2
Platelets 31

Those of you that follow this regularly are saying, but they don't go to clinic until Monday....well, we went yesterday because the place where they did the biopsy on his arm was looking REALLY red. They decided a major factor was that the stitches needed to come out (the derm. said they would "dissolve", but they were so big I was skeptical.) But after seeing how far his counts had dropped (and they are still dropping), the doc decided to give him and IV antibiotic there in the clinic and also send us home with a prescription. Then told me if Eli gets ANY fever whatsoever this weekend, we are in "the big house". So prayers for no fever for the next week are greatly appreciated. Monday will also be a long clinic day because Eli will probably need both blood and platelets. It makes things interesting because it is also the first day of school for the boys. As usual, my mom came to the rescue and said she would pick them up for me.

So after a long clinic visit, Eli and I came home so I could get dressed and go with John out to eat with my family for my dad's birthday and my parent's anniversary. It was at Fleet Landing restaurant downtown and very fun. Then we came home, again praying for no fever for Eli. And low and behold, Jacob has a fever of 103!!!! So, John packed him up and took him to my parent's house. His fever came down after a while, but John took him to the Dr today anyway. He doesn't have strep...it is probably viral. He was still running a fever today. I hope it goes away by tomorrow or he may miss the first day of school!! It was impossible for me to sleep....that was the first time one of my boy's has gotten sick and I wasn't there for them. I know what we are doing is right, but boy is it tough. I feel as though I am having to choose between who to take care of, and I hate that. It just isn't fair.

Well, that's all I have for now. Thanks for checking in.

Maria

I am thankful that Eli is still feeling well. I am thankful that we didn't have to be admitted yesterday. Prayers that Jacob is feeling better and fever free tomorrow.

Pictures during and after steroids.....wow....can you tell the difference?!?

Eli's Team Team in Training Page website is.......

www.active.com/donate/tntsc/elisteam

Please go and give lots and lots of money!!!!! I just put it together, so as I have more time I will try to "fancy it up" a bit. As I said before, many of you will also get letters from me. I have had about 10 people so far interested in walking....it should be lots of fun!!! Let me know if you want to walk it too..

Todays counts:

ANC 250 (Normal 2000-6000+)

Hemoglobin 9.9 (Normal 11.0-15.0)

Platelets 130 (Normal 140-440)

So our counts have gone WAY down and will continue to. We will probably be homebound now until delayed intensification is over....but then we get to go to Long Term Maint!!!!! The thing I am most bummed about is the platelet counts. When this number plummets I get very nervous about head injuries. With three boys I get lots of bumps and bruises, and without platelets those things become a real problem.

Our clinic visit today was a bit of a nightmare. Eli again couldn't eat or drink due to having an LP (Lumbar Puncture) and they had some confusion with the chemo, then the anestesiologist. So we didn't get started until close to 1pm. We were there at 8am and hungry and thirsty when we walked in the door, so you can imagine how we were at 1!!! I have to say, though, that I am always in awe of how well Eli handles all of this. He really didn't fuss, just played and watched TV. I think I was fussier than he was!!LOL

John is taking this week off, so he took Sam and Jacob with him and they did some fun stuff. I think they are planning to go to the beach tomorrow. I am glad as this will give the boys a last good week before school starts.

Jacob's eighth birthday was on Saturday. I never thought I would be old enough to have an eight year old son.....wow. We went to the Battery Soccer game for a party and he had lots of fun. Little bittersweet for me because Eli was home with a babysitter and it was the first time that our entire family wasn't together for an event like this. I get so mad when I see other kids and I know that he should be able to be having all of that fun, too. I know it will come soon enough, and luckily he doesn't realize what he is missing, but it is still frustrating for me, the mom.

Eli quote of the week: When we were in the hospital, Eli and I were walking the halls because the playroom had closed. I was walking with his IV pole. (Which had a short line) Eli turns around to me and says "Quit following me! You're making me nervous!"....I thought I was going to die laughing. One of the nurses heard him and told me that I really needed to write it down, so here it is.....Hope it made ya'll smile as well.

Thanks for the prayers and for checking in.

Maria

I am sooooo thankful that I have such wonderful and giving friends.

Monday's labs were:

Hemoglobin 11.8 (Normal 11.0-15.0)
Platelets 392 (Normal 140-440)
ANC 1136 (Normal 2000-6000+) BUT we needed 750 to get started YEA!!!!

So we were admitted!!! It took quite a while in the clinic before we got a room (we got upstairs around 4:00 or so, we got there at 8:00) Eli really handled not eating or drinking before his LP well. I think we got the procedure around 11am, so it wasn't as bad as it has been before.

We got some of our favorite nurses in the hospital, Adrianne and Sarah. It came to me that this is our last planned visit to the hospital for chemo. WOW. Although it doesn't always seem like it, I guess we are moving forward with this. All of the rest of chemo will be at home, every day. Eli has to get his ARA-C shots this week and next, and there seems to be a shortage of pediatric home health nurses, so we are having to go to the clinic for a shot every day....that is yucky, especially since it is so unbearably hot (120 heat index). But it is quick visit, in and out, so not so bad.

We got to meet the new oncologist from John's Hopkins, Dr. Hudspeth. I really like her. Eli's little rash that he has had on his arm seemed to get worse Monday and Tuesday, and she went ahead and asked dermotology to do a biopsy. The derm doc didn't seem to really want to do it, but she pushed. And I am with her. I would much rather do it now while his counts are up and rule out any fungus or bacterial problem than wait and NOT be able to do it later because he has no immune protection. I think it may just be a drug reaction to an antibiotic that was given to him. It seems better today, so that is good.

On a different note, I have decided to walk the Myrtle Beach half marathon in February to raise money for the Leukemia and Lymphoma Society. I am recruiting anyone that wants to walk with me and help me raise funds. The marathon is on Feb 16, and I think the entrance fee is $60. I will post the web site for giving as soon as I get it, and you may also get a letter from me. I have already had about 9 or so people say they would like to walk it. I am hoping to do this on a yearly basis. It has been weighing so heavily on my heart lately the number of children that are being diagnosed with these horrible cancers, and also how many children are dying from it. I know we have gone a long way in the past 20 years or so, but what many people (me included 8 months ago) is how long we have to go.

I met another young man that has been diagnosed with ALL. His name is Justin and he is 9 yrs old. He is currently at MUSC. His grandmother is one of my grandmother's caregivers at Bishop Gadsden. Please pray for this young man and his family.

Thanks for checking in.

Maria

I am thankful that we got to start the last phase of Delayed Intensification on Monday and we are one step closer to Long Term Maintenance. I am thankful that Eli is feeling well and is handling the chemo well. I am so thankful for the wonderful nurses on 7B that take such good care of all of our children with cancer.

And the results are.......ANC 550. And then we came home again. AAARRRRGGGGGG!!!

The really funny thing is that I kept telling John how many people seem to have delays during this phase, but it is still so very frustrating. I just want to get on with it. That coupled with the fact that this is the 3rd time that we have been NPO (NO food or drink past midnight) and that is so frustrating. Eli has handled it like the trooper that he is...Mommy is just out of her mind. HAHA.

Through a church friend I was introduced to the family of Kinsey. She is a 16 month BEAUTIFUL girl just diagnosed with ALL. Please keep her and her family in your prayers as they go through this really difficult time. Her family seems to be doing great, and she has a wonderful mom, but prayers are always appreciated.

We go back to the clinic on Monday for another run. Please pray that we have an ANC of at least 750 and are able to begin the next phase so I don't go crazy.....

Thanks for checking in.

Maria

I am thankful for the great doctors and nurses at the clinic that make us so comfortable and take such good care of us. Eli's nurse, Bobby, is especially such a blessing giving him hugs and kisses whenever we go.