We had a long clinic visit today, but everything was OK. Eli's platelets had dropped to 15,000 and so they needed to give him some prior to his getting his Lumbar Puncture. This added on to the regular time of just waiting for the chemo, etc. meant we were there from 9-4. He was sleepy because he had some trouble sleeping last night, so we sat/slept in the chair while we waited. He got the shot while he was sedated, which I really appreciated. Those really hurt.

Now we wait to see if the Vincristine chemo they gave him today affects his walking. It seemed to in the hospital, but we were also going through so much other stuff that we really don't know if that was the reason or not.

Eli's ANC dropped to 251 and will continue to drop. So we are again "nuetropenic" and have to stay away from things for the next couple of weeks. He seems to have a little cough but it is more nasal than anything else. But we need to watch it because these kids get so sick so fast. It is hard to keep them away from all of these sicknesses this time of year especially with the older boys. Jake had a cough and we made him wear a mask in the house. I guess I will find at what point I am creating a "bubble" for Eli, but it is hard not to want to just stay in your cave to keep him safe.

We have another clinic appointment on Thursday because the doctors think that Eli will need more blood at that point and I also think they want to check on his cold. Then next Monday is the next LP for a while. We have an MRI scheduled for March 15. I am feeling like this is going to be a full time job for a while...if in the end he is healthy, It will be worth it and then some.

Thanks for the prayers and the support. I'll update again soon.

Another uneventful week. (Praise God!!) We got outside as much as possible this week and enjoyed the good weather. Eli had his round of ARA-C chemo which has to be given with shots at home, so we got 2 shots for Tues, and Wed,and Thurs and 1 shot on Fri. The pharmacy that we had to work with sent the wrong concentration, so we had to give 2 vs. 1. Hopefully next month we can get that straightened out and only have to do one the entire time. Eli was such a big boy with those shots!! I got the numby cream to put on his legs, but the drama associated with that was actually worse than the shots, so we did without. We got a sticker chart and he gets a sticker each time he takes his meds or gets a shot. He filled up the chart and was able to get a cool Star Wars toy. My little guy has completely passed the Thomas the Train stage, we are way into Star Wars and Scooby Doo...two things I don't think Jacob even knew about until he was 5...The home health nurse, Pat, even brought him some Star Wars stickers that he loves.

I noticed Eli was looking a little pale on Wednesday, so I set up a clinic appt for Friday to have his blood checked. Sure enough, his hemoglobin was down to 7.3 (they give blood at 8.0) So we stayed at the clinic all day and got a blood transfusion. Of course he didn't nap at all, so I chased him around with his pole all afternoon....it was frustrating at times, but I am thankful that he is so full of energy. All of his counts have plummeted, just as the doctors predicted. He is now at an ANC of 751 as of yesterday. Monday we will be going in for another round. He will be getting the Vincristine, the PEG shots in his legs, and another Lumbar Puncture with chemo. I am hoping the Vincristine won't affect his walking, he has been doing so much better. He even tried to run the other day...but if it does, we will deal with it. After this round we will take a break until his counts recover, then we will basically repeat this month again without the Lumbar Punctures. (yea!!)

A neighbor of ours, Suzanne Cherry Poole, is running in a triathalon with The Leukemia and Lymphoma Society's Team in Training in honor of Eli and another little girl that she worked with that lost her battle with leukemia in July. Her website is www.active.com/donate/tntsc/SCherryPoole if you would like to donate or www.teamintraining.org to check on her progress. (look her up as a participant) I always find myself wondering how amazing it would it be if we could find a cure for this horrible disease, and these folks are working to make it happen.

I will let everyone know how Monday goes. The doctors have set up for us to have an MRI again probably next week so we can se if the brain lesions have completely recovered or not.....Thanks for the prayers...they are certainly working!!

What a great weekend!! We have had a good week, and a great weekend. John and I traded off on Saturday running the boys to basketball and running errands. One of us stayed home with Eli, but we took him out for walks and bike rides. On Sunday Mom and Dad came over and played with Eli while the rest of us went to the church Oyster Roast. As usual, God provided an awesome day for some wonderful fellowship. It was cool, but the sun was shining and the oysters were yummy. We enjoyed being out in the world together.

We went for our clinic appointment today. As with last week, the appointment went fine but the waiting was terrible. We got there at 8:45am and we finally started our spinal tap at around 12:30. Eli was starving, so after we had a "picnic" of cherios and fruit snax in the procedure room. A nurse finally explained to me that they have to have the blood counts to even order the chemo, then they have to wait for everything to come up...this is what takes such a long time and it will always have to be done this way. So now I know it is an all day event. Eli's counts were 3,400!!!! That is NORMAL...wow...I am used to not just Low but Critical, and now we are at normal. The doc warned me that they will plummet later this week because of the chemo. His hemoglobin is down and we may need to go in later this week to see if he needs a transfusion. The doc also gave us a prescription for something to help with Eli's appetite....he is down to 25.6 pounds, from close to 30when we started this whole thing. Nothing to worry about yet, but also something we don't want to get out of hand.

Meanwhile, we will go outside as much as the weather permits,(It is supposed to be around 65 degrees the rest of the week) and enjoy it while we can. Eli is in great spirits and seems to be feeling fine, so life in the Crowley house is good.

In the hospital again...but only for one night!! We went back to the hospital on Tuesday night so we could start Eli on his new round of chemo. We are in the "consolidation" phase of the treatment, so we have all new drugs. We had an MRI, Spinal Tap, and bone marrow aspirate done on Tuesday morning, so the doc said we should just stay the night while they gave hime the chemo. We were able to come home on Wednesday although the discharge time took so long I was going crazy!!

The tests all came back positive, and the MRI showed that although the brain lesions have not gone away completely, they are now significantly smaller...yea!! There is still no leukemia in his central nervous system, and his marrow is recovering well.

Now we will go to the clinic once a week for a spinal tap and he is taking meds here at home and he is getting shots at home administered by a home health care nurse (thank goodness, I was scared we were going to have to do it ourselves!!) He seems to be handling the meds pretty well, and he is still doing well.

Eli is talking so much, I think John and I had forgotten how verbal he is....when we were in the hospital he really stopped talking, sometimes altogether. You can tell how much happier he is now and so are we!!!!

WE ARE HOME!!! On Friday morning the doctor came by and said we could leave....I hugged her I was so happy. Eli's counts had jumped to 821 and he was still doing well, so she really said there was no need to keep us. We thought we would have to do home health for some of the antibiotics we were on, but it turns out that we could take him off of all of them but two which we can take by mouth. We thought we would be home early, but ended up coming home about 5:30.

How wonderful it is for all of us to be here. The boys played in the playroom all evening, and even in that little time I saw Eli really brighten up. Today we played and even went outside for a little while. It was a little chilly, but sunny and we went for a bike ride and walk. I could tell he was a little bit tired, but he really kept up!!! My sister called and hit it right on the nail when she said I must have the biggest smile in all of Charleston, and I think she is right.

I am going to finally put some pictures of Eli in the hospital and some of him home....

Our only challenge now is realizing that although we are home, Eli is still at the very beginnings of our journey. The way things usually go, when you come home from the hospital it means you are well, but with us it just means we get to fight this thing from here. Our counts are "up", which means he is probably at about an ANC of 1000, but the realism is that a healthy boy has an ANC of about 11,000. So we will have our challenges, and we have to be very careful to guard him from infections. A hard job during cold and flu season. As I told John, for the rest of this year we are going to have many small, healthy play dates. Eli's little frient Abrielle came over today and they played a while.

We will go to the clinic on Monday for some blood work and then Tuesday for another MRI and Spinal Tap and probably our first round of Chemo in this phase of the treatment.

But that is later, right now I am completely enjoying my laughing, smiling, happy little boys!!! I am learning to enjoy the here and now, and not be anxious over things that are to come...

We are going home!!! Eli has continued to do better...today my challenge was handling a "healthy" 2-year-old boy in a hospital room all day. That was a really nice challenge to have....we played in the playroom, we rode in the wagon, we walked in the hall, we went down to the lobby and saw the fishes....we did lots today!!!

Our counts were up to 440 this morning and all of his numbers are looking great, so we were really excited, but I really thought the doctor was going to keep us here at least until Tuesday when we have the MRI scheduled. However, the doctor came by this afternoon and said that she thought that we would probably go home tomorrow. If not tomorrow, then definitely on Saturday. I almost cried... imagine, my entire family under one roof again.

I know our journey with this is really just beginning, but I feel being home will give us a chance to really figure all of this out. We will probably begin our next phase of treatment next week, but hopefully this time is WILL all be outpatient at the clinic. We will keep you posted and I will put some pictures up in the next few days.

I am really scared I am going to jinx us, but each day has gotten better and better. Eli's rash is almost all gone, he is still a little itchy but I think that may be because his skin is so very dry now. He is peeling, too. We gave him an oatmeal bath last night and today which has helped.

Amazing thing...yesterday our ANC count was 70...it had continued to go down. This is not a source of worry because we know it will happen, but we were hoping for the opposite. Well, today we are at 210!!!!! Amazing...so now the big 500 doesn't look that scary.

Yesterday the doctor came in and told us that all of the cultures had come back negative. I then asked her if we could go into the atrium and play...she said she didn't see why not. Eli then proceeded to stand up in his crib and give her a kiss!! It was the funniest thing to watch because it caught both the doctor and me completely offguard.

So we have gotten to play. He is still not 100%, but I think it did him so much good to play with the other boys and girls. He has not begun eating much again which we are a little concerned about because he was eating so well, but one thing at a time, one day at a time.

The doctor said we may get to go home by Valentine's again...wow.

Today was a day full of small, and not so small, miracles...

To the big one first....

Eli is a "Rapid Early Responder"...Yea!!! I want to shout it out to anyone that will listen!! That means that we are done with the Yuckiest part of the treatment, Induction, and now we move on to the next step which is Consolidation. The great part about this is that they won't begin the next phase until his counts are up, so we WILL get to got home before we get anymore chemo. (Unless he gets sick again...)

He is also SOOO much better. He is still kinda red, but alot of the swelling has gone down, especially in his genital area, and I can really tell it makes a big difference in how he feels. We took him off of the morphine drip and we are really doing a good job keeping him comfortable with Benedryl and the topical ointment.

Jane came by today with lunch and they took Eli into the treatment room to remove the catheter and reaccess his port (it got clogged up) I was really glad to have her there, as we sat there for what seemed like forever listening to him scream in the other room. I let the nurses take him in without me because I honestly thought it was going to be a five minute procedure, and it was awful. The thing is I know he screams even when they take the tape off of him, but it was excruciating not being in there. Not something I will do again, but Jane made small talk and helped me try to put my mind somewhere else. This small miracle was completely for my sake, but I needed it.

My book that I am reading comes with a story that I shared with Carrie King today and realized just how it was a "Divine" coincidence as I was telling it: When we did the informational meeting in the trailers of the church for the DOK, I spent the morning there setting things up. I probably have spent a total of 1 hour in those trailers in the past 6 months. As I was sitting by myself I noticed the little library in the corner of the room and went to check the books out. I saw the book "Where is God When It Hurts" by Phillip Yancy and although I was not hurting I thought it would be interesting. So I picked it up and it sat next to my computer until the weeks after Eli was diagnosed and I went home and was going through my bills. I saw the book and realized that it might be able to help me....and BOY has it!!! I am still struggling, but I feel as though I am also "turning a corner".

My Valentine's Day prayer may come true....our counts were down today to 130, but all of his other numbers are up which is really positive. And I am smiling for what feels like the first time in days!!!!!

Today things are beginning to look better. They have given Eli a couple of treatments of a protein and some blood along with some lasik (?) to help him get rid of some of the access fluids in his body. He really looked like a little Michelin baby for a couple of days. Today he is still swollen, but it looks better. His genital area is not as swollen which seems to be hurting him less. Again, the docs aren't sure if he will swell up again, hopefully not. The dermotologist came by yesterday and recommended a topical ointment to put on the itchier areas, which seems to be helping.

All that aside....his counts are up!! We are up to 163 ANC, which is higher than we have been in a month. His platelets and white blood cells are up too. Hopefully we will find out on Monday that we can move into Consolidation and that means no more chemo until he is at 750!! His hemoglobin is down, but they seem to think his blood is "diluted" because of all of the access fluids in his system.

I am still reading my book. I hit one amazing quote about how the body of christ is called to show God's love when He seems not to. The emphasis the author had here was seems. He talks about how CS Lewis commented that after his wife died it was his community that helped him to connect to God while he felt he could not....until he reached a point where he could again. That is truly how I feel and it was really something to read it in a book

My prayer today is that he continues to improve and be comfortable and that maybe we can be home by Valentine's day!!

Yesterday was definitely a tough one for me. After his MRI we went back to the room and had a real roller coaster of an afternoon. At one point they were considering putting Eli back into the PICU for observation (which I was in favor of), but things settled down and we stayed on 7B. We had an incredible nurse, Nikki, who was incidently one of Brady Quick's nurses when he was here. She basically spent the entire afternoon with us in the room, which was a comfort. John came here in the afternoon, and I went home last night and slept in my bed.

The rash looks a little better today, but he is swollen. It has gotten worse during the morning, but they think he may just be retaining fluids because his genital area is so swollen he doesn't want to pee. They are going to put in a catheter while they are doing his spinal tap and bone aspirate and that should help. We still don't know the cause of all of this, so it is a wait and see.

On a good note, we got the results back from the MRI and and they were positive. The lesions have not gone completely away, but they are smaller. This was good news. We also got the test results back from the genetic testing, and although they showed the extra chromosome which is good, the doc said it also showed lots of broken chromosomes, which may be a problem. Apparently there is some syndrome that causes chromosomes to be extra fragile. If we have the syndrome, it means all of the chromosomes are fragile, not just the leukemia ones and we may have to adjust the treatment accordingly because he wouldn't be able to tolerate the chemo as well as someone without the syndrome. She said it is rare that someone has the syndrome, but they will send blood on Monday.

I got a call this morning from a friend of my mom's who had given blood/platelets for a friend's child before, and she said that the doctor can give a number that you can take to the West Ashley Red Cross and they will put the blood in Eli's name. I asked the doc about it and she said she would give me what I need. I will let ya'll know as soon as I get it. I know many people have asked about giving blood or platelets and I am sorry I haven't gotten back to you. One thing this experience has taught me is how inportant it is to give blood whenever you can.

I am reading a book ,Where is God When It Hurts, to try to help me understand all of this in my life and in the larger picture and although I have not finished it one quote stands out so far that I am thinking about a lot: "many Bible passages show that some things are more awful to God than the pain of his children....Do these show God's lack of compassion? Or do they, rather, demonstrate that some things are more important to God than a suffering-free life for even his most loyal followers?" I am giving it lots of thought, and I will finish the book.

For my "group", sorry I missed last night. I will definitely be at the next one.

Thanks again for all of your uplifting comments and prayers. Again, you are giving me strength daily.

Another hard day...Eli is having his MRI right now, and I am in the CICU area on the computer. I am beginning to wonder how much more of this we are going to have to take, and how much more of this Eli can handle. We gave him a continuous drip of Morphine last night because the rash has gotten much worse, he looks to me almost like a burn victim..his skin is so bright red. I am just trying to keep him from scratching. His fevers continued through the night even with the Tylenol every 4 hours. The doctor said she thinks it may be viral, which means we could have 2 or more weeks of this. Right now his ANC is 56, so that means he has nothing left to fight the virus and it will have to run until his counts come back up. He is having another (the last in induction) round of chemo tomorrow, so that won't happen any time soon. I think John said it this morning when he said it seems as though we are killing him with the meds to make him better. The doctor said she has seen all of these things before, but never in the same child. So, I have come back to my same question of what in the world (or out of this world) is worth my baby suffering so much?

His sodium has dropped which has us concerned and he is not urinating. They are going to catheterize him while he is sedated and empty his bladder, which is risky with his counts being so low but we don't want to risk a bladder or urinary infection. The rash has spread to his parts "down under" making him swell and obviously uncomfortable.

As a mother, I am lost. There is nothing I can do to make him more comfortable. I can only sit there with him and wish and pray...which honestly, doesn't seem to be working. Again, I ask you to keep praying for my precious boy.