Tuesday, February 26, 2008
Hi there all!! We were able to come home on Sunday afternoon. Dr Al-Zein said that he was breaking his own rules because Elijah's counts had dropped even more, but he trusted us that we would bring him back if he got a fever. Nothing grew on the cultures and he stayed fever free so thankfully we were able to come home. It was the first time I had heard Elijah say that he didn't want to come home. He was having so much fun with all of the toys and felt fine, not to mention he had mom and dad 24/7 with our full attention!!! I would be loving it too. After the first day of pokes, they weren't really doing much to him so he thought it was a-okay! We are back to our normal routine now at home and it's just much better for all of us. We are continuing to do the radiation this week, and I can't wait for it to be over. Today was the first time he has been in a good mood to start, and actually woke up in an okay mood too. I had his favorite chips waiting for him so I think that helped!! We will for sure remember that the next couple of days. I had the radiology tech take some pictures of him with the radiation mask on and the machine they use so I posted those for everyone to see. The mask is actually a little disturbing. Good thing he has never seen it or even know that he wears it! Elijah will probably be getting more blood and platelet transfusions in the next week or two. He won't be getting anymore chemo until his counts (his ANC) are up to 750. Since they are at about 20 right now, Dr. Al-Zein said that it might be a couple of weeks before he can start up again. This also means that as long as the ANC is low, he is at high risk of fevers and hospital admissions. Lets all pray for big numbers next time he has his counts checked. That's all for now, Love you all!!!
Saturday, February 23, 2008
Just a quick side note that I forgot to mention in my latest update. Some friends of ours, Kevin and Jennie Heileson, are having a fundraiser in Elijah's behalf and I wanted to give the link to the blog that Jennie made to share the flyer with all of the information on it. The address is www.elijahhancockfundraiser.blogspot.com. Check it out, it's going to be a fun night!!!
We didn't have a very good day on Friday. We are now back in the hospital as of about 5:30pm yesterday. BUMMER!!!! Elijah spiked a fever and to the hospital we came. We were in the outpatient clinic yesterday and Dr Al-Zein said he couldn't believe he hadn't been in yet because his ANC has been low for a couple of weeks. I think he jinxed us!!! He also got this very unusual hives/rash that no one can explain. The chemo meds that he received yesterday are the same ones he has had for the past few weeks, so it's unlikely he had a reaction to them. The resident this morning said that it could be something viral he has especially since he had a fever, but there is really no way to tell right now. As soon as I get a camera up here, I'll take a picture and show you what I'm talking about. This was a crappy ending to a VERY long week. He has been pretty grumpy. They have to put him to sleep every time they do radiation and he is usually fine before he goes to sleep, but then wakes up in a funk. The radiation itself takes a matter of a few minutes, it takes longer to get him asleep then the actual radiation. One more week of that and then we're done with that part of it. We haven't talked with Dr Al-Zein yet, but we are assuming we will be here for the 72 hours it takes to get the blood cultures back and then we can get back home. So far he hasn't done too bad here in the hospital, normal fighting is all. They had to draw blood from his line and from his arm, and it took a couple of pokes to get that. It's amazing how strong a three year old can be when he's angry!!! Well, that's all for now, I'll update later when we know more. Love you all!!
Sunday, February 17, 2008
Yes, I know it has been far too long since I updated. Not that I'm trying to make excuses, but we have been having issues with our service since we have been home. It truly is awesome to be home. "There's no place like home." Elijah has done pretty well and knock on wood has not had a fever!!! We have been back and forth to the outpatient clinic three times for further chemo treatments. Elijah is now in the second phase of his treatment, called the consolidation phase. The doctors told us that with the chemo durgs he would be taking he would feel very lously and one of the major side effects would be that they would drop his counts. Were they ever right!! Two weeks ago Friday Elijah received a transfusion of blood and then this last Friday he received a transfusion of platelets. His ANC is also very low, so EXTRA careful right now to say the least. He has otherwise done okay with everything. He has started to get sick occasionally, but he usually gets sick and then immediatly after looks at us and smiles. Elijah also starts his radiation tomorrow (Monday 18th). We had to go for the consultation and get him fitted for this mask that they use for the radiation. He has to be in the same exact position for this every time he goes. He will get a total of 8 radiation treatments Monday thru Thursday of this week and then the same for the following week. When we went for the consulation, they did a test run of the sediation that they will use. They used the same drug that they used for him in Iowa City when he was intubated, called Profofol (sp?). It worked well, but like always he needed just a little bit more than normal. The sediation team that worked with him is great. They don't hesitate to give him what he needs to stay asleep, and still be safe. It will for sure be a long week of driving back and forth to the hoispital every day. Elijah really seems to be a different person since we came home. The week before last he starting showing great signs of improvement. We showed him him how he could stand up on his own and it didn't take him long to get the hang of it. He can now go up the stairs himself, but goning down he still needs a little help with. It's amazing how much he has had to learn again. It's like having to 1 year olds. Speaking of 1 year olds, Alivia has had a rough few weeks. At first I thought she was detoxing from all the attention she got while we were in the hospital. Then I realized that not only did she have ear infections, but she was also trying to cut 6 (yes 6) teeth all at the same time!!! I don't know whats more difficult all at the same time, or one here and there over a peroid of time. She was not sleeping and did not want to be put down, EVER!!! She is starting to do better now, but her mouth really did look painful for a couple of weeks. Hopefully she will be done for awhile!! On Friday the doctors told me not to be surprised if Elijah gets a fever this weekend because his ANC is so low, and now that it is Sunday afternoon I hope that we can make it through the rest of the week too!! I can't imagine the day he has to be admitted back to the hospital, eventhough I know it's coming. I hope people haven't stopped reading this blog because I didn't update for so long. Please pass the word that I'm back online!!! I will try to keep you updated on the progress of his radiation. We love you all!!