Good News

Finally some good news for a change. Today we found out that the preliminary results from Nick's bone marrow biopsy are GOOD! Nick's donor marrow is working and on the job fighting Nick's CML! The PCR from his marrow was .3 per 1,000 cells which is very, very good and these kind of numbers can even be found in people who have been in remission for years. Nick's MRI results are also good...no signs of CML cells hanging out on myelin sheaths clogging up the works. Therefore, for at least right now, I think any talk of radiation is on the back burner. And if that was not enough...Nick's doctor called after we got home from his appointment to let us know that the IT chemo Nick has been getting is doing the job! When he was admitted this past time, Nick had over 2,000 lymphoid blast cells in his CSF. This was what was causing all the headaches and pain. After the first dose of chemo, this number dropped to 100 blast cells. The phone call from Dr. F (henceforth renamed as Dr. Frosty) gave us the results from the second dose of chemo...only 4 blast cells!! This is all wonderful news and to say I feel a lot better is an understatement.

Today Nick received his fourth lumbar puncture and his third dose of IT chemo. This time the new attending Dr. Pants has decided that methotrexate should be added back into the mix of drugs as he wants to hit these blast cells and hit them hard. Even when the fluid has been cleared of all the bad cells, Nick will still have to continue to get IT chemo for a period of possibly one to two years! In normal circumstances, after a BMT Nick would never get chemo again. However, because it has come back in the spinal fluid, it now has to be treated long term. Nick's case is so rare and unusual there are just not a lot protocols to follow since there are not enough people with his type of leukemia with its combo of bad stem cells, both myeloid and lymphoid. Also, now with the CNS relapse after BMT, this further puts us into new territory. The doctors have to make the best plan they know and go forward. Dr. Pants was very much for Nick having the Ommaya reservoir placed, so we will want to discuss further with a neurosurgeon and eventually Nick must decide if this is the way he wants to go. More on that later.

Despite all this good news, Nick is not feeling very well. He has been very fatigued and his energy level has been down. He has really lost a lot of weight again with the hospital stay and basically being without eating for quite a period of time. Being off the steroids for the GVHD has caused his appetite to plummet back to his pre-steroid level. He is eating, but, it is going to take a while to put on the pounds. So far no problems with headache, nausea or vomiting. I hope it stays that way. The Decadron they are giving him pre and post LP seems to be working right now. The latest development is a GI disturbance of another nature which can also be bad. So the doctor send a test to make sure that the C. difficile has not returned. It could also be the new oral chemo med that is upsetting his stomach as well. We have yet to figure this one out.

Today at Nick's appointment I got very emotional and really lost it for a little bit. Dr. Frosty was very nice and was so upset he kept asking me what happened? Nothing happened per se, sometimes just being in that place gets to me these days. It was hard going back to the clinic, especially knowing Nick is not feeling up to par. Long story for another day. I got it together and Nick had his LP without any problems. (Still painful, no matter what!) While Nick was laying flat for two hours, we got to talk with Dr. Frosty and Dr. Pants for way longer than they probably wanted to talk and answer a lot of our questions. Dr. Pants told us that Nick is actually discussed quite often amongst all of the attending group because his case is quite rare and I believe they are genuinely concerned about Nick and are trying to give him the best chance to beat this thing. That's why I chose this picture...this is Nick telling the cancer where to stick it!