Well, we are back in our "bubble". Eli's counts are now at 250 and continuing to drop. His platelets are at 50,000...We got red blood yesterday at clinic, his hemoglobin was borderline but I wanted to go ahead and do it so we wouldn't be running into problems with it this weekend and have to go into the ER. It was a full day at clinic. We got there at 8:30 and left at 3:00. I am getting used to the long visits, and you get to know the other families that are there.

John is going to take Eli on Monday. It will probably be another long day because he gets 2 chemo treatments...one is those horrible intermuscular shots (ouch!!) and he will probably get some platelets as well. But I think John going will be good so he can meet all of the wonderful nurses that take care of us and see what it is like. Eli will probably enjoy spending time with Daddy as well.

The boys are on Spring Break this week. A while back John and I decided he would take the week off, which proved to be an awesome idea since Eli really can't go out this week at all. That way one of us can go out with them and let them have some fun.

The four of us are going to the Japanese Restaurant tonight to celebrate Jacob's nearly perfect report card. He has been working really hard on his behavior and we are so proud of him. My mom is going to stay with Eli so we can all go.

Please pray that Eli continues doing well and that the treatments he gets on Monday go well. Everyone enjoy Palm Sunday.

Eli took all of his meds last night and this morning all by himself!! I thought I was going to cry I was so happy. What a difference things are when we aren't fighting about the medications. I know it won't always be this easy, but at least it isn't a 12 round fight every morning and evening.

We went to clinic yesterday and his counts are down to 1180. This is still really good, but since we were at 2800 on Friday we know they are going down fast. We have another appointment on Friday because they think he will probably need a transfusion and/or platelets by then.

We went on a bike ride today and poor Eli threw up in the middle. He is getting the shots everyday that make him sick, and mommy forgot to give him his anti nausea medicine. Talk about a major guilt trip. But as I have said before, there is such a blessing in that he is at that age where he gets sick, then wants to play. We just came home, took the Zofran, and he was fine the rest of the day. I put a note up for myself so I won't forget. The doc put him on an antibiotic for his toe (it is kinda ingrown and red) and I was so worried I would forget that one because it is in the fridge that I totally spaced on the Zofran. OOPS. I know he forgives me.

Please pray that Eli continues to do well with all of this. His counts will be really low for the next couple of weeks, so we really need the fevers and infections to stay away....otherwise we will be back in the hospital.

What a great week we have had!!! Our hospital visit was pretty uneventful. They did need to give Eli something to help him urinate during the night after his Cytoxin treatment, but that was really what we were there for. (In case that happened.) We got out of the hospital about midday on Tuesday so our stay was really quick and painless.

Because Eli's counts were high, we tried to get out and do as much as possible. Cher and I took Eli and his friend Abrielle to the outlet mall (in the morning, outside on a weekday) and he seemed to really enjoy himself. Other than taking some extra germ protections and not going to any indoor play areas we tried to do as much as possible. The weather was great, so we were able to take lots of bike rides and play in the back yard.

We got our shots on Wed and Thurs. I put the numby stuff on his leg and it really went well. I put it on with the press and seal like they do in the clinic and he didn't mind it. He will get shots again for 4 days this week...He is taking his oral Chemo daily and it seems to be getting easier. The great thing is that there is no more gagging and vomiting, so I know he is getting the meds that he so needs.

Friday we went to the clinic just to see where his counts were for the upcoming weekend...and we were at a whopping 2800!!! So, we actually took the boys out for mexican food on Friday night here on the island. We managed to get a seat outside in the corner away from most people and it was wonderful. That is actually the first time our entire family has been out together in close to 3 months. (And for those of you that don't know....we LOVE to eat out!!) What a treat for us.

Saturday I got up with my friend Cher and we went to the garage sales on the island. Suzanne and company had a great sale benefitting the Leukemia Society with a bake sale and everything. I picked up some cookies for the boys that they loved....The rest of the day we spent picking up odds and ends getting our house out of winter and into spring.....

We got up and went to church this AM. John went to the 8 and I went to the 10 with the boys. I think that is how we will try to do it in the future, that way we both get to go. The Hucks and the Tyners came over this afternoon for lunch...it was so fun...6 adults and 9 kids and another on the way....Eli had a blast and is still talking about Amelia Rose (the Hucks' youngest girl!!)

It was just so wonderful to have a "normal" weekend. I feel that this is God's way of helping me to really get my second wind so I will be ready for the next down time. We know Eli's counts are going to drop this week and will probably be really low beginning this next weekend....but as I have said, we will deal with that when it comes....one day at a time :)

Here we are in the hospital again....it is funny how comfortable we are here now. When we are coming in like today to get a procedure and then leave we visit with all of the nurses and techs that we have come to know and love..it is funny how the right people can make anything easier.

We got to the clinic this morning at 9am only to wait, wait, and wait. It is now 9:00 and he is just beginning to get his chemo. It is almost as though when you walk into this hospital you are in thier own time zone, or no time zone at all. But as I said before, this is really teaching me patience because I know it is out of my hands. It will get done, and that will be fine.

Eli's counts were at 1490 and his platelets were actually above normal....what a nice change of pace. If he continues like he did last month we should have another week of good counts and then they will begin to plummet next week as these drugs get into his system. The Hucks family that we vacation with every year will be coming into town this weekend and it would be great for him to be feeling well!!

Please pray that Eli handles this chemo well and continues to do as well as he has. The meds are getting a little easier (absolutely struggling with us, but no vomiting:) Thanks for the support and prayers for our little trooper!!

No tube after all....I went into the clinic on Thursday all ready for it and the doctor really didn't want to do that just for the meds. So, he got on the phone with the neurologist and got Eli off of the phenobarbytol!!! We are now on a med that we only take 1ml of 2x a day and it tastes like coconut. He is still not happy about taking it, but the vomiting has stopped. Although I was really happy about this I wondered at the same time why we couldn't have done this 2 weeks ago when I was telling them how horrible things were getting with the oral meds. It is almost as if they didn't really take me seriously until I was as the end!!

We go back to the clinic on Monday and spend the night in the hospital Monday night for our next "round". They will give him the Cytoxin through the IV then monitor him for 24 hours. The shots start on Monday, too, but those really weren't that bad. His counts are probably up now and will stay that way for another week or so, then we will plummet.

Our MRI is now scheduled for April 12 at 9:30. I got it moved back so we could get an earlier time. It was at 11:30 and Eli can't eat or drink before...NIGHTMARE!!! So, this was things will be a little easier. He isn't scheduled for another LP for awhile, so there was no problem in waiting a little bit.

Thanks for the prayers on the meds....again, God found a way to make it better...Please pray that this next round goes well and we stay away from fevers!!!

Can I just say...I HATE ORAL MEDICATIONS!!!!!! I know this is harsh....but I am at my wits end with this. I called the clinic and I think tomorrow I am going to go in and have them put a GI tube in so I can give him the meds directly instead of this hellish procedure we are doing twice a day. I am going to do some research tonight and talk to them in the morning, but this may be our only option right now. The nurse told me today that the thing with kids Eli's age is that they pull them out quite often. But I really don't know what else to do. The Phenobarbytol is the med that he hates so much (it tastes absolutely horrid and nothing will mask it) and now he is not wanting to take anything. I have tried everything anyone has mentioned and then some. I am thinking maybe if the tube works we can do that for a while and then see if it gets any better. Right now this is the biggest stress point in my life...I just pray we can get past this and on with things.

What a cutie Eli is!!!

Our weekend was pretty uneventful..we stayed in most of it, but the weather on Sunday was sunny and 75degrees, so we went for a nature hike with Cher and her kids. Eli stayed in the stroller with his mask on and did a pretty good job. Apparently I can take him outside when his counts are low, I just need to be sure to take the proper precautions. So that means with the great spring weather we will be outside lots!!!

We went back to the clinic both yesterday and today. Yesterday was our normal check, and today I took him in because he seemed under the weather. I told the nurses that I really feel as though I have my first newborn baby all over again...all of this is so new and scary. I'm not sure what is just normal and when I need to have him see a doc. He has been battling a cold (so have I) and I think it got me nervous...but,. they sent us home today after giving him some fluids and checking his lungs, etc.

His counts are going up, now is ANC is up to 340 and his other counts are recovering as well :) We will go back into the hospital on Monday to start the next round. It will be very much like the past month, but without all of the Lumbar Punctures (Yea!!) I am very concerned about the oral meds we will be giving him every night. It wasn't that big a deal before, but that was before all of this throwing up stuff that he has decided to pull. It has become quite a struggle every morning and evening to get him to take the meds and keep them down. Please pray that he will become more compliant about this. It is such a stresser because we know he needs these drugs so much!!

We found out that our "three years of treatment" will actually begin when we begin Interim Maintenance which will be in about 5-6 weeks....not that it makes that big a difference, but WOW what a bummer...it seems so long to think we will be living this until May 2010 or so....then they see him for 5 years after that and then they will continue to see him occasionally until he is 18..when I think about that it really blows my mind. But it will be wonderful to see him at 18!!!

John is out of town this week. Thanks to Jennifer, Cher, and Danielle I have been able to make both of these clinic visits without a problem. Thank you, thank you, thank you!!

Today was a good day....we went to the clinic for a check up and his bloodwork looked great. When the doctor got the preliminary results back everything looked like it was going up and his platelets had remained OK. She said that if the ANC looked up we may start chemo on Monday. While she was giving the exam the nurse came in and gave us the ANC. A Whopping 14!! So, we will not start chemo on Monday. As John put it, this might be a good thing to get a little more of a break. We will go back to the clinic on Monday to get a monthly antibiotic and check to see where we are then.

The nurses and the doctor said he is looking so good...and he really is!! I will post a picture here soon...

Prayer for today: Thanks that Eli is doing so well and praying that he continues to do well.

I am really feeling rather sorry for myself today...I think maybe all of this is finally hitting me, I seem to have been in crisis mode for so long after our diagnosis that I think this may be a delayed reaction.

Eli is doing so great in every way except for taking his meds. He has figured a way to make himself gag and then throw them up. So tomorrow at clinic I have to ask the question of how much do I need to worry when he does this? He did it both this morning and this evening and I found myself getting so angry at him, then feeling horrible. All he knows is it is yucky and he doesn't want to take them....And he has been such a trooper.

I just can't seem to get the "why me's" out of my head today. We have been laying really low this week with his counts being nonexistant on Tuesday. (His ANC was at 0 which means he has nothing at all to fight infection in his body) I think that coupled with our hospital stay earlier in the week has me a little low.

I do see all of the wonderful blessings we have been given in the past two months...it is amazing. Tomorrow we go back to the clinic to do bloodwork and see where we are. I got this idea from a friend of a friends website and really liked it, (and ya'll are always asking what you can pray for:) so here goes:

Prayer Requests:

The fever stays away
Eli's counts go up
Eli has easier time with meds
Thanks for Eli's appetite increase
Thanks for Eli's handling the Vincristine chemo so well
Pray that I can continue to find the blessings in all this and some peace.

Thanks!!

Home again!! Thank God!! I finally managed to talk the doctor into letting us go home...it was a tough sell, but as long as we don't have a fever we will get to stay home until his counts come up and he starts the next round of chemo. It is wonderful again to be here. Eli's counts are at ZERO so we will not be leaving the house until Friday when we have to go to clinic. But I would much rather be here than at the hospital.....

We are STILL in the hospital.....YUCK!!! Eli's counts have continued to stay very low...today we were at an ANC of 30. He seems to feel fine although he has gotten sick a couple of times, but I think that might be due to the antibiotic he is on. I am so scared he is going to catch something there in the hospital...at least I know what is clean in my house.

The blessing here is that I have an active 2 year old to chase around the hospital. The curse is also that I have an active 2 year old to chase aroung the hospital. He is very bored with the whold situation and just wants to go home...and so do we.

His Spinal Tap went well today and he also got a dose of the Vincristine chemo as well. This is the one that causes muscle weakness and foot drop, so we will be watching out for those things. Now we are in the middle of Consolidation and that means that nothing else is given to him until the counts are at least 750...and we have nowhere to go but UP<>>>>

My Beautiful Son

I watch you playing,
Without a care.
It's hard to believe
The cancer is there.

You look so bright,
So happy and well.
If someone new met you
They couldn't tell.

Your strength is amazing,
Your courage so strong.
You've fought this disease
So well for so long.

It's from your strength,
that I draw mine.
I know you will come through this,
It'll just take time.

Carry on smiling,
I will too.
Through the hard times
I'll carry you.

You are my world,
The air that I breathe,
I know in my heart
You'll never leave.

Keep strong my love,
The battle has begun,
But with your strength,
It will be won.

Sorry for being so sappy!!! I know that will get some people weepy-eyed (it did me) But I saw it and it so beautifully puts into words how I feel that I wanted to share it!!!

Well, we knew it wouldn't last forever....we are back in the hospital. Eli had a little cough all week and it wasn't too bad, the doctor took a listen on Thursday when we went to the clinic and said his lungs sounded really clear, just to watch it. Sure enough on Thursday night he ran a fever. It wasn't a really high one, just 100.7, but with his counts down they told us to go ahead and go to the hospital and plan on spending the night. Today his ANC was down to 30 and he needed both platlets and red blood. The fever hasn't seemed to come back, but they have had him medicated with Tylenol all day because they were giving him blood products. We will get the blood cultures back today that will tell us if it is anything bacterial.

The question now is when do we get to go home? Apparently the different doctors feel differently about it. The doctor that was on today will send someone home with low counts as long as they seem to be doing well, but he is leaving tonight. The attending tomorrow seems to want the counts to be going in the right direction before going home. If that is so, it may be a while....but we don't know. John and I don't quite understand why it would be OK to be home now if Eli hadn't gotten this fever, so if the fever goes away, what is the problem....but ultimately we will do what the doctor feels is best for him. It was reassuring to be in the hospital today and have them run the blood work and have him need both blood products instead of me trying to guess at home. I just don't feel confident enough yet in my prognostic abilities:)

The doctor brought up the whole methatrexate dilemma today (whether we should start giving it to him intrathecally again.) Apparently there is no studies on how ARA-C works this way, all studies show the methatrexate works. But there are the brain lesions that appeared after he was given this drug. John read somewhere that brain lesions can occur if there is a mistake made while administering the drug into the spine, but the docs aren't going to agree with that. So, what to do? We certainly don't want to give him something that will cause more brain lesions, but we also don't want hims to relapse and have leukemia in his central nervous system...we will pray and hope that we make the right choice when the time comes.

I have to stop for a minute and thank everyone for being so supportive to us during this time. It is amazing to me that I can go into the hospital at a moments notice and have someone take the boys for some time while John got home, take Sam to school, give Sam lunch at school, pick both boys up in the afternoon, and help out with them during the day (all different people). I don't know where we would be right now if not for the support of our wonderful family and friends and I thank God for you each night as I go to sleep. Thanks!!!