Home finally after 35 days

Week of Feb 29 - March 8

Not too much to report during this time. Jordan continued to struggle with fevers and ended up on three different antibiotics that finally corrected the problem. On Sunday, March 5th, she got a day pass and went home for about 5 hours. This was a nice break for her, she really needed it. She continued to improve over the next couple of days and finally got discharged to go home (after 35 nights in the hospital) on March 8th. Discharge instructions are specific. If you run a fever of 100.5 or higher you get readmitted. This is a tall order, as in anyone else we would not consider this a fever at all. But when your ANC is low and you don’t have any white blood cells to fight infection, it becomes critical and should not be taken lightly. The doctors are most concerned about her becoming Septic. Sepsis is some kind of bacteria in your blood that attacks your internal organs, and its deadly most of the time. By coincidence my company deals with a lady from another company and her healthy 12 year old daughter collapsed at school this week and was taken by air to All Children’s Hospital where she was diagnosed with Sepsis. She only lived 24 hours.

Jordan had a bone marrow biopsy done today to check and see if she is in remission. We should get the results back early next week. Dr. Rossbach did the procedure and said it was a quick draw, which normally indicates the bone marrow is healthy. When the bone marrow is full of Leukemia, it is difficult to pull it from the bone because it sticks. Since her bone marrow came out so easily, he is fairly certain she might be in remission.

After Dr. Rossbach did the procedure, he talked with Danny and me to let us know that they have changed Jordan’s diagnosis. She actually has CML instead of AML. (Chronic instead of Acute) They feel they caught it during a Blast Crisis Phase and say the original diagnosis of AML was because it was masking itself due to the blast crisis. The reason they are sure it is CML instead of AML is because she has the long Philadelphia Chromosome instead of the short one. There are no known cases of anyone having the Long Philadelphia Chromosome with AML, it is always associated with CML. Her treatment doesn’t change, but the fact that she needs to have a Bone Marrow Transplant is no longer an option, it is the only way she can survive CML. I also found out that I am not a match for her bone marrow, which means we now have to look for an unrelated donor. This can be people who are actually related, but are labeled as unrelated because they are not a parent or sibling to the patient.

We did find out that Blood Type doesn’t matter in being a Bone Marrow Donor. This opens up the possibilities even further, but matches are harder once you have a different ethnic background. There is less donor pool to find a match.

CML has three phases, the Chronic Phase, the Acute Phase and the Blast Crisis Phase. The Blast Crisis Phase is the most severe phase.

Jordan case is now reported. Her doctors cannot find any other doctor in the nation that has had a case like hers. Her entire presentation with back pain to this point is unique.

We got home tonight (March 8th) and Jordan was still a bit nervous but she did okay, until she took her temperature and it was 100.7 She had just woken up, so I asked her to unwrap herself from her blanket and sit in the family room where it was cooler. Her temp immediately dropped back down under 100. I think she was just warm from sleeping and being bundled up. I must have gotten up and checked on her 4 or 5 times that night to make sure she wasn’t actually running a fever. Thankfully she was not.