Home at last!

Yeah! We are finally home! On Sunday morning I got the phone call from Jason asking me to come pick him and Critter up from the hospital! The docs had finally decided that even though our ANC wasn't up the rest of our labs were looking great. It turns out that home health can be a little slow on Sundays. So after rushing to the hospital to pick them up we had to wait around for them to give his antibiotics because home health couldn't deliver them in time. So we ended up getting home at around 5:00pm on Sunday. It was marvelous! Critter is doing much better. He is off all of his pain meds and is eating normally again now that we are at home. Maybe its just the mother in me but I think he looks a little withered and weak. This round has been rough and you can tell he has been through the ringer. I am grateful to put the past behind us and enjoy our time at home. ONE MORE TO GO!!!

Not yet

Well here we are moving onto day 24 (not that I'm counting) and we are still waiting on the labs. Some days they move up, some days they move down. Yesterday his white count was .7 today it was .6. They want a little more proof that he is moving in the upward direction before he goes home so here we are. He took a 4+ hour nap today. I can't decided if that's good ( he is healing) or bad (why is he so exhausted?). Because he is so tired and his heart rate is a little high they are giving him blood tonight even though his HCT is a few points above transfusion level. I'm glad they are giving him blood. He just seems exhausted. He will play for a little bit then lay on my lap for a little bit. Then play then he wants to be rocked. Its kinda sad. The up side is we do lots of snuggling. He is happy (as long as he gets his pain meds). That is better too, we almost never get morphine anymore just oxycodone. All in all things are pretty good. I don't know when our labs will rise. I am expecting that one day the docs will walk in and say "hey do you want to go home today?" That's kinda how it is one day your rock bottom the next your body kicked into gear and your labs are great.

Recovery! Finally!

Critter must have known I was at my wits end because he gave me a wonderful day today. We moved around some of his meds and I think it made a huge difference. His labs are also starting to show cell growth. They say when his cells start growing again they will heal him and repair any damage and he will no longer need any of the meds. So better labs, less meds. His white count is only .5 right now but he is up in other areas! That means if they look good for the next few days or even as early as tomorrow we might get to go home! Critter was happy today! He played with toys, he crawled around, he ate food! He still slept a lot but that's expected. He has picked up a few bad habits though. He steals syringes out of nurses pockets and refuses vital signs unless he is eating a cinnamon bear. I am just happy he is feeling better. I'm sorry there haven't been any good pics lately. I will post some tomorrow. I'm just so happy he had a good day I felt guilty for my last complaining post. I think the Lord knew I was done. Maybe it is true that the Lord will never give you more than you can handle. I had had enough and today was a relief. I am ready to face another day and another round of chemo. One more! We are almost there!

Ohhh thats why!

Well we finally found out why they keep us for count recovery. On Wednesday Critter got an infection. They always told us they were keeping us "just in case" and I can tell you after this week I am glad we spend extra time in the hospital.

Wednesday day Critter started acting tired and upset. By the afternoon he was running a fever. They started antibiotics (3 different kinds) and gave him Tylenol. The third antibiotic was almost done going in when Critter started acting upset again. This was about 8:00pm. I picked him up and held him and he went to sleep on my shoulder. Shortly after he started shaking. I got nervous and called the nurse in. She called the doctors and before I knew it we had a team of resident and attending doctors standing around me with about 3 other nurses pushing meds as fast as they could. If you think about it a fever is an immune response. Your body's response to the bacteria. Well if you don't have any white cells to respond to the bacteria you wont form a fever. So by the time Critter's body recognized the bacteria it had spread throughout his whole body. When the antibiotics attack the bacteria it kinda explodes releasing all of its toxins into his body. This is called a bacterial shower. His temperature went from 97.8 to 103.4 in 4 minutes. His skin became a funny color because the body was shunting blood only to the major organs which meant his arms and legs became a purplish color. His blood pressure dropped dangerously low and his heart rate sky rocketted trying to keep up with everything else. He also started requiring a lot of oxygen. Basically his body went into shock.

After a few hours he stabilized and slept. More doctors came to see him and decide if he should be transferred to the PICU. Then it started again. It happened about every 3 hours during the night. It always starting with him shaking and I would call the nurses. Luckily he showed this sign first before his blood pressure would drop. It gave the nurses enough time to get some fluids in him and made it easier to stabilize him which meant he didn't end up going to the PICU although we constantly had PICU docs in his room. By Thursday morning I had spent the entire day and night in a rocking chair holding Critter. I didn't sleep except for a few short cat naps in the chair. But by Thursday morning Critter was stabilized. He slept most of Thursday and a good part of Friday. Always in my arms in the chair. He did make it to his crib at night but during the day he had to be in my arms.

He is doing a little better now. His cultures showed that it was a really bad strain of Ecoli. They are now giving him a special antibiotic to target this strain of Ecoli and he hasn't had a fever since Friday night. He is still very sleepy and very grumpy. He is in a lot of pain (I guess Ecoli and chemo equals pain) so he is getting a lot of pain meds. We have also started over on trying to get him to eat. Between feeling sick and during the past week he has had mouth sores on and off (also painful). So some days he will take a bottle and some days he wont. We are still spending much of our time in the rocking chair. My back is killing me. It looks like we will not be coming home anytime soon. Our labs are still rock bottom. The docs predict another week to 10 days. They would also like him to finish his antibiotics before going home. If he was feeling really well they said they might send us home with the antibiotics but he is not feeling well so far. Today is day 20. I have to say thank you so much to everyone that has brought dinners and taken my children again and again. Thank you for all your prayers and kind words. They are such a support. We feel so bad asking people to bring dinners and babysit children month after month but you keep supporting us and I don't know what we would do with out it. Thank you so much!

The Future

Well Critters labs are at their lowest right now. So we wait. Encourage him to eat. Watch the labs. Today is day 13. We are usually in for 22 to 23 days. One drug he received this time is has a history of dropping patients labs down for a longer time. I hope we are out in the same amount of time but if not we are mentally prepared for a little longer stay. The docs are discussing the use of steroids with his next round of chemo to try and prevent the rash. The dermatologist asked if there were other options to using the Ara-C. The option is to not treat the cancer. So he said treat the cancer, give the chemo, his skin will suffer and we will have to do our best to support him. Not the best response but I'm not about to stop treatment now.

We only have one round left! I want to just get it done as soon as possible. I want to be done with all of this. But patience is something I am working on so we will wait for the labs to dictate our future. I recently spoke with a 16 year old kid who had had testicular cancer. He met Critter and we discussed the similarities in treatments. He was treated for about 6 months. He said "it was the worst six months of my life but it was only six months and its over now". He came back to talk to parents and teens who are currently receiving treatment. It is always so touching now to meet a cancer survivor. No matter what kind of cancer. These are people who have had their lives torn from them and then they have conquered the unthinkable, they have endured the unbearable. They have risen from the depths and emerged different people, better people because of it. We hope to someday soon join their ranks.

The Present

A few days ago they started Critter on some antibiotics and some steroids to help his rash. The steroids can make him irritable but they can also make him hungry. He is eating a little more. It kinda depends on the day. Sunday he ate an adequate amount of food. Today he didn't eat quite as much. But the best news is that his rash is looking soooo much better! It is still peeling but it looks like it is healing now. Its not all better but is at least not looking worse day by day. He did fall and bump his chin and of course his thin skin tore and he now has a chin strap shaped sore on his chin. I promise underneath all those sores and rashes there is a very cute little boy! Some of the funnest news is that Critter is finally walking! I think some of his drugs have made him a little dizzy or unbalanced. He was really steady at home and then regressed in the hospital. But Sunday he started letting go of things and walking on his own! All day today he roamed around trying to get used to his legs. I am so proud of him. Even with all he has been through he is still putting one foot in front of the other. I know I have said it a million times but we are so blessed to have such a strong little boy. I think I would have laid down and given up long ago.

The Past

I am so sorry I haven't posted anything. I always try to be upbeat in my posts and I haven't had a lot of good things to write about so I haven't written. Now that I am fairly confident that I wont burst into tears over my computer I think I can tell you whats been going on. We finished chemo on Wednesday! Yeah! He had his last dose of Gemtuzamub ( a drug he previously had a bad reaction to) without any problems. We dosed him with lots of benadryl and Tylenol for the entire day and although he was irritable he didn't have any type of serious reaction.

On Wednesday he only had one bottle and a few small things to eat. He usually stops eating and looses weight for a few days. We always hold our breath and hope he starts gaining and eating before the docs notice and decide to put in an NG tube (this is a tube that would go in his nose and to his stomach. They can give feedings in it. In the NICU where I work we use these all the time. I have even put them in before but for Critter this is my worst nightmare. He wont even wear oxygen on his face I can see him pulling out the NG tube and us placing it time and time again. If the kid is throwing a big enough fit it is really hard to place a tube. It just keeps coming out their mouth instead of going into their stomach. It is awful and I don't think I could stand to see him go through that multiple times a day).

Eating aside, Critter has acquired a really bad rash. He gets a chemo drug called Ara-C. It is the backbone of his treatment. It can cause skin reactions. Critter has one of the most severe skin reactions any of the docs have ever seen. They all come in to gawk at him. (I don't really mind, in the medical field any type of unusual thing you can learn from is really interesting to see). Usually they get this rash on their hands and feet. Critter has it on his head, face and arms from the elbow down. It is just like a really bad sunburn. It blisters and peels, burns and itches, and it causes the skin to be paper thin. He is getting sores behind his ears from his ears rubbing against his head!

Anyway it is painful and irritating. We wait until he is miserable and then give morphine for the pain. The morphine doesn't put him to sleep, it puts him in a dazed, drugged out state. It makes me sick as a parent to know I am doing that to my child but the other option is pain. I have struggled this past week because I am all of the sudden so tired of watching him suffer. I haven't felt like he is really suffering until now. Usually its a few bad days and then he recovers. Since we were admitted he has struggled. I would gladly take the pain and suffer for him. I think it is harder to watch your children in pain than to be in pain yourself. Whether emotion or physical pain. This week I have been intensely aware of how our father in heaven must have felt watching his son suffer innocently. The atonement means so much more than it ever has.

Higher doses...harder times

Critter has had a so so week, he started out well but due to the increased doses of the chemo and the introduction of a new drug this round it has been pretty hard on him. For a while now his head has been very fragile, any little bump would peel skin away and leave an oozing wound, well due to the chemo again it has worsened and on top of that his entire head and also his arms are now a nice spotty red color. The docs say that this can be quite uncomfortable almost like an itchy rash so as you can imagine on top of being tired and nauseated he also is in discomfort from this rash. For so long we have been so lucky that he has been so strong but the increase in chemo doses is really catching up with us. Chemo can change the taste of food so most chemo patients will binge eating one type of food that might taste good that day. With Critter it is an eternal guessing a game to find something he will eat even though he may be starving he only wants one thing but we have to guess what it is. He is throwing more temper tantrums I think because he is not feeling well and really frustrated.

Critter has had a few reactions to drugs, like today when he cried for three hours straight apparently a reaction to a nausea med. Our list of allergies continues to grow. He had a really bad reaction to one of his chemo drugs. He will get it again on Wednesday because he needs the chemo so they will try to medicate for the reaction. Please pray for him, pray for us we can truly feel the strength of all of you and we need all of the strength we can get, we love you all.