Boy have I been lazy about writing here....sorry. But we have had little change. Eli's counts were up to 350 on Friday. Yesterday we went in to get things started and we were at the big 419. So we wait. They won't do anything until he is at least at 750 ANC. We have another appointment on Thursday and we will see then.

Other than being "homebound", Eli is really doing well. He has lost almost all of his baby hair again leaving him almost totally bald. His mood is good, and his appetite has lessened.

So we will wait.....I will let you know.

Thanks for checking in, and thank you for your prayers.

Maria

I am thankful that Eli is still feeling well. I am thankful for my beautiful family.

We have hit a delay. Yesterday John took Eli to the clinic to get his new round of treatment and be admitted overnight. Well, they came home after a few hours. ANC was at 230 YUCK!! They even checked it twice to be sure. We thought there would be no problem since he was at 1300 a week ago, but from what the doctors say the steroids really cause the counts to go on a roller coaster. So we will wait. I will take Eli tomorrow just to get blood work. They have rescheduled his treatment and LP for Monday, so we will see where we go from there.

Eli has really been in the best mood the past couple of days. His appetite is still really strong, but that is really fine with me since he probably won't want to eat at all once he starts the new stuff.

Our friends. the Valdez family, moved to Atlanta yesterday. We are really going to miss them. Alan is a great friend to Sam and Jake, and Abrielle has been Eli's buddy the past few months. Cher has also been a wonderful friend and support to me these past few months....but I know they will love it in Atlanta and in thier new farm house!!!

Thanks to everyone that gave blood on Monday. I think they got the goal....if you missed Monday, please take the time to give blood. It is so important to these little guys.

I'll let everyone know how Friday's labs go. Thanks for checking in.

Maria

I am thankful for Eli's wonderful mood lateley. I am thankful for my friends and family.

This is Eli (or "chubb" as I like to call him) on day 18 of steroids. He is eating chips, which he has eaten 2 big bags of in a week. We finally ended the steroids on Wednesday morning, but he is still eating lots. He is really bloated looking and, truthfully, really sick looking to me. I know this is one of many side effects of the meds, but it is so hard to see my little guy looking so sad.

Last night Eli ran a fever of 99.5 or so and seemed to be breathing as though he were very uncomfortable. So we called, and John took him to the ER at 3am. They took some xrays and it seems that although he is pooping many times each day, he is constipated. So we are giving him a laxative to see if we can make him more comfortable. On a good note, his ANC is up to 1300...so we will definitely be able to begin chemo again on Wednesday.

Jake will finish "Camp Invention" today. He loves to invent things..and they take apart all kinds of appliances to see what is in them and use it for something else. Sam has been in VBS for Holy Cross and enjoyed it. I am so grateful to Kim Emerson and Danielle Theobald for picking/taking my boys this week. I was not comfortable taking Eli into rooms with loads of children. They were certainly a godsend.

I was able to go out with "the girls" for a little while last night. Thanks Robin, Crystal, Kendra, and Jennifer for staying lots longer than I am sure you planned on so I could talk about "normal" kid stuff for a while. It was just what the doctor ordered!!

Thanks for checking in...have a good weekend.

Maria

I am thankful that Eli is not sick. I am thankful that we are done with steroids and half way done with DI. I am soooo thankful that we have such wonderful and supportive friends.

Please pray for the family of Harrison, who lost his battle on Monday to leukemia. May God give them strength in this time of grief.

Todays counts:

ANC 400 (normal 2000-6600+)
Platelets 220 (normal 140-400)
Hemoglobin 12.0 (normal 11.0-15.0)

We went to clinic today because Eli's left toe is looking really angry again. We just can't get over this ingrown toe nail!! Hopefully once we are in maint. we can get it fixed, but for now we just take more antibiotics. He is also experiencing some pretty bad diaper rash, which is never fun. I am doing everything the wound care nurse in the hospital recommended, so hopefully it will get better soon. I went ahead and had them draw the blood so we don't have to go back until next Wednesday. He is supposed to be admitted that day for some Cytoxin...hopefully the counts will be back up to 750 so we can get going.

Eli has gone from eating chicken to eating "ravioli". Actually it is cheese tortolini...I am cooking it constantly. He is wanting chips in the middle of the night...much easier than cooking chicken. His sleeping isn't very good...at least we only have 2 more days of these terrible steroids..

Jacob had an amazing time at camp...I knew he would. He said he didn't miss up at all, which I am betting is probably right. He can't wait to go back next year. This week he is at camp invention and Sam is at the Holy Cross VBS. They both seem to enjoy it. Trying to keep them busy this summer has been tough. I can't believe summer will be over soon. Part of me feels guilty that I have "wished away" this summer because of Eli. I just want it to be over so we can get to maint. and maybe some normalcy. I know I said at the beginning of all of this that it is truly a marathon....but living it is so different from simply saying the words. I wake up and think....boy we have been doing this for almost 8 months...but I have almost 3 yrs to go....WOW. But we WILL get there and we WILL beat this thing. I do believe that.

Hope you have a good week.

Maria

I am thankful that Eli will finish his steroids this week. I am thankful that we haven't had any really terrible side effects from this round of chemo. I am thankful for my wonderful family that gives me joy every day.

Blood Drive in Honor of Eli Crowley

Christ Episcopal Church, Mt. Pleasant

Monday July 23,2007

1PM-6PM

Please come out and give blood!! Eli has received numerous platelets as well as red blood and will still need more, as do many other children fighting this horrible disease!!!

If you would like to schedule an appointment, please call Ann Furmanchek at 881-5787.

Today's counts:

ANC 610 (Normal 2000-6600+)
Hemoglobin 12.0 (Normal 11.0-15.0)
Platelets 216 (Normal 140-440)

Our good counts ride is over. With a count of 610 we will not be going out very much this week. The really scary thing is that we don't know if they are still going down or not. But anyway you put it, Eli is very open to infection right now. I am really glad that we got out so much the past week. It will make the staying in much easier to handle.

He is also a bit of a monster. John and I were both up at 2:30am this morning making him chicken. I know this sounds rediculous and seems as though we are giving in to him....but he screamed for at least a half hour wanting only chicken. I spoke to the doc today and he basically said to try to appease him the next week...the steroids will make him very miserable. I guess this is what it feels like to live with Dr. Jeckyl and Mr. Hyde. One second he is snuggling with me on the couch, the next he is calling me stupid. (yes, my two year old child called me stupid...and he knew exactly what he was doing.) He isn't smiling very much, and just seems mad all the time.

Taking Jacob to camp was much more difficult than I expected. He had no problems....I just hope he does well. In the back of my mind I am so sure he will, but I still worry. We will pick him up on Saturday and hear all about the great week he had.

I will try to update again this week. Hope the week goes well for you.

Livestrong,

Maria

Please pray for the family of Charlie, a little boy who lost his fight this week. May God comfort them as they go through this most difficult time.

I am thankful that Eli's chemo went well today and that he did not need blood or platelets. I am thankful there is such an amazing place as St. Christopher camp for my children to learn about community and God.

We have had a good weekend. With Eli's counts being high, we really wanted to take advantage of it. He doesn't seem to be feeling 100%, so I think our fun time is almost over. The steroids are definitely hitting him....his moods seem to be getting worse and worse. We are on day 11 of 21 days of steroids...then on to the tough chemo. We were able to go to the beach on Friday night and tonight for a while. Tonight we went with Sallie and her family. The kids had a blast, but then it started to thunder and we had to come home. We still have to keep Eli out of the sun, but the dpc saod tje beach was fine. Here are some pics.

We take Jacob to Camp St. Christopher on Tuesday for the week. I know he will have a blast, but it will be his first time away for that long....mom is really worried!! I will let everyone know how Wed goes.

Livestrong,

Maria

I am thankful that Eli continues to do well. I am thankful that we have had this really good time to enjoy each other and some of the summer before his counts go down and we are unable to go out....

Here are a couple of pictures that we did NOT use...but I thought they were cute.

Counts:
WBC 4570 (normal 5000-11000)
ANC 2770 (2000-6000)
Hemoglobin 12.6 (11.0-15.0)

As you can see, our counts are wonderful...so we have been enjoying this great week.

The boys and I went to the clinic on Monday morning to get Eli's intermuscular PEG shots. They went off well...although we were there most of the day. With his counts being up John and I decided to take the kids to the baseball game on Tues night for the fireworks. (After asking the doc of course) It was by far the most crowded place that we have been in the past 7 months, and I was really nervous..even with Eli's mask on and us being outside. But the boys had such a great time. We also went to the aquarium in the early AM before anyone showed up...we have done that three times lateley.

Wednesday we had a great time at the pool with all of our Daniel Island neighbors. We had the annual parade and pool party...what a good time. Unfortunately, Eli's chemo day is Wednesday and chemo waits for no man or child...so John was at the hospital with Eli getting his treatment. ( Do I have a great husband or what?!) Everything went fine and John was home by 3 or so, and we had his mom, the Lawrence family and the Valdez family over for home fireworks. Eli was asleep by 7:30...he had a late night at the game, then a hard day at the hospital.

I took the boys to get pics taken this morning. I decided in November when Eli turned two to take a pic of all the boys at Easter instead of some then.....little did I know that our spring was going to be full of days when we couldn't have gone anywhere. So, I had not yet gotten the pics taken. With his counts being so good, I took him. Well...needless to say, there is a challenge taking a two year old on steroids to take pictures. But we got a couple of good ones (I will try to post them) so I was happy.

With the 4th of July week here, I have been saying prayers for those that have sacrificed to keep this country what it is....I was talking to a friend the other day about what it would be like going through this in a third world country (or worse)....would we have the odds that we do now? We are blessed to be in this country where we have the availability of such wonderful doctors and nurses to take care of our children when we need them....sappy, I know, but just a thought.

Hope ya'll had a good holiday, too. Take care and I will tell you how things go next week.

Livestrong,

Maria