Return to journal list

Journal entries from 01/01/03 - 12/17/02

01/01/03

Jackson is doing so much better. His ANC counts (which is a collective count of many things), has gone from 560 yesterday to 2023 today. This is great and the doctor says that it means that the transplant took and is doing very well. His mouth sores are almost gone and his phlegm is much better. He is still throwing up and is getting frequent bloody noses. But they are trying to manage those problems and are taking him off of several of his antibiotics. At one time he was on seven different types to keep his fever down, but now his fever is down and he is on only 3 different antibiotics. His fever is down now and he has been very sleepy. He slept 19.5 hours on Monday night and he sure needed it. The doctors are very happy and are surprised how well he is doing. He has been an amazing patient, but has had some very emotional and hard times. Staci has gone to two classes on how his food has to be prepared and how the house and everything else must be sterile for the next year. We are sure excited to get back to Lewiston and treat this boy like a normal six year old. He will have many new rules for the next year, but what a blessing.

12/29/02

Jackson has had a pretty rough week. He has had a temp of 101-103 for the past seven days and has no energy at all. When he goes to the bathroom he shakes so bad he can hardly stand there. The phlegm in his throat is the worst of all, he has a little tube that sucks air and he uses that all day long to help clear all of it away. He does well for around a half hour and then starts gagging and dry heaving and coughs up some of the slimy gunk. Now that we have told you the bad side, his pain level is managed much better and only hurts real bad when his gagging and coughing is going on. Inside his mouth is solid sores and all of the skin is peeling away, but they have medicine that is helping coat all of that to help the pain. His counts bounced up today for the first time and makes us very cautiously optimistic. He has occasional bloody noses so they are giving him platelets to raise the clotting level of his blood. As bad as all of this sounds we are doing fine. We are on day eight after the transfusion and we shouldn't be far from the bottom and we are definitely ready to head up the other side. Nights are fairly rough, but he gets decent sleep while Staci and I trade off and stay with him. That part isn't too good, if we get two hours of sleep a night we feel lucky and most of that is in fifteen minute blocks. Nina and the person who doesn't stay with him stay at the apartment and get a good rest for the next shift. We can't wait to be home and we miss Wyatt more than ever. He is still doing fine and we get to talk to him often.

12/24/02

Jackson is doing as well as can be expected. He has had a high fever for a couple days and is very weak. If his pain medicine gets low his throat and mouth hurt really bad. He doesn't talk much and is happiest laying there and watching TV or listening to Christmas music. He is already a special boy for many of the nurses and continues to amaze others with his positive attitude. He has shed many tears, but most of the time the sadness is short lasting as he is waiting for another dose of medicine. We want to wish each and every one of you a very Merry Christmas and hope that you find the time to truly cherish each other as we cherish all of you for all that you have given us. Our Christmas is different this year, but we feel that we are as lucky as we can be for Jackson to have done so well and to have so many friends and family. Thank you very much and God bless.

12/22/02

Both days of the transplant went very well. The doctors are very pleased and we are happy with how everything has gone so far. We are getting the first dose of what we have in store for the next two weeks. Jackson has been vomiting quite a bit and his throat is very raw, he says it feels like there are knives in his throat when he swallows. His bottom is very sore from all the diarrhea and all of the medicine has him very emotional. So all of this together, he is a pretty unhappy little boy right now. The doctors say he will be like this until his counts come back up, which will be from 10 - 14 days. We knew that this was all ahead of us and now it looks like it's time to go to battle and take care of this too. When Jackson has any strength he is happy and wanting to play basketball or one of his many board games. When the tough stuff hits, he wants to not talk to anyone and not answer any questions. We are amazed at how many other kids are around us that are battling cancer and going through much of the same problems. From babies to late teenagers, they are brave kids that are going through more than any one person should endure in a lifetime. We will never forget these brave children and the unfortunate ones to follow in their footsteps.

12/20/02

Jackson got his first stem cell infusion today and it went very well. He got half of his dose today and will get the second half tomorrow. The doctors said that he came through this first one just great. Jackson's spirits' are still up so far through this first transfusion. Also he was moved to a different room today and we have updated the address for the hospital.

12/17/02

Staci and I are both in Seattle now and everything is going as planned. Jackson is getting sick a couple times a day, but not as bad as predicted so far. His energy is getting low, but his spirits are still high. Friday and Saturday are his big days for the transplant. Many consider this your second birthday when you get your transplant, kind of a second lease on life. That means he will be sharing his second birthday with Wanda, Dave, and Becky (Heaven help us). There are many stipulations that he now has in his room and what he can eat. For instance he can't have live flowers or latex balloons. We also have to use antibacterial soap every time we leave or enter the room. He is also not taking any food or drink by mouth and is receiving all nutrition through the IV. We want to say a special thank you to all of you that have done so much and said so many prayers for our family. It's all helping. We are also adding our addresses where we will be staying.