February 12, 2009

Wow, the last 37 hours has felt a week long. But it's all been worth it (but please indulge my slightly obsessive compulsive need to give the facts in chronological order). Wednesday morning we arrived at City of Hope (COH), Tom gave his blood (in preparation for his semi-weekly transfusion), had his PICC Line flushed (to prevent infection) and waited to see Doctor Chen. I appreciate that COH organizes Tom's days to reduce down time. He does too, since he's always eager to get back to work.

Dr. Chen shared that Tom's "redo" T-Cell Gene Rearrangement Test came back positive again. But, he reiterated that he believes its inconclusive in diagnosing T-Cell Lymphoma. The PET scan will be needed to complete the expected ruling out of T-Cell Lymphoma. Dr. Chen reviewed Tom's myriad medications and made some changes. He also examined Tom's mouth sores, at one point asking a colleague to come in and consult on the sores and assignment of medications. They recommended Tom no longer brush his teeth, but "sponge" them, as Tom's gums are inflamed. As this was going on Tom's brother, Steve, arrived at COH and gave his blood. He also dropped off Dave's blood. When Tom's transfusion was complete he was a bit tired and had a little, not uncommon, case of the shivers. A few hours later Tom had a fever of 103.4 F (as Tom's typical temperature is 97.6 F, this was especially concerning). COH instructed us to bring him back. They drew blood to look for an infection (nothing has been revealed yet, but they will continue monitoring) and completed a chest x-ray, which was clear. However, due to his fever, coupled with his nonexistent immune system, they admitted him.

His doctor let him know that he will need to be fever-free for 48-hour before he can be released. I was disappointed that he was not able to receive his PET scan today. Despite the fact that there is great confidence that T-Cell Lymphoma will be ruled out, I'm still looking forward to the finalization of this "out-ruling." However, because Dr. Chen was also disappointed (as it is a necessary step before he can move forward with ordering the stem cell transplant) he noted that Tom will have his PET scan the day after he is released from the hospital, which will likely be Monday. Tom's temperature dropped to an acceptable level by 6:00 AM this morning. However, rather than be discharged on Saturday he will not be released until Monday. If for no other reason than that Tom will undergo a number of the the "Pre-Admission Tests" required to precede the transplant:

• Blood Tests (Multiple organ function)
• Creatinine Clearance (Kidney function)
• Chest x-ray (Lungs & Heart abnormalities)
• EKG (Heart function)
• Echocardiogram (Heart strength)
• CT Scan (comprehensive)
• MUGA Scan (Muscular function)
• PFTs (Lung function)
• Bone Marrow Aspiration and Biopsy (Bone marrow function - not sure if he'll have to have another. This would be his third)
• Dental Examination (Infection prevention)
• MRI (Body tissue)

The reason that they are moving forward with this testing now brings us to the great news of the day: TOM'S BROTHER, TIM, IS AN HLA-MATCH FOR TOM. With 6 brothers statitistics were in Tom's favor, but there were clearly no guarantees. Results for four of Tom's brothers were in (pleasingly 7 to 8 days earlier than expected). Marc, Mike and Jeff are not a match. We are so grateful that they made the trek to COH to offer up the chance.

For those of you who don't know Tim is number five of seven DuBransky boys (Tom's #4). Tim has a lovely family, including his wife, Scotiska, his son, Julian (the first DuBransky grandchild) and his daughter, Aliyah. I've actually known Tim longer than Tom, longer than any other DuBranskys and have a ton of great memories with him, as, of course, Tom does. This would be a great memory to add to the list, "Hey Tim, remember the time you saved Tom's life? That was great."

While still basking in the great news we received a visit from one of the transplant consultants (Tom's consultant, Naomi, will stop by tomorrow). We received a lot of information, including a tentative schedule:

• March 7, 2009: Estimated start of Tom's "preconditioning" chemotherapy (yes, he will lose all his hair, including his goat)
• March 13, 2009: Estimated date of "harvesting" (nice word for the mauling of Tim and thievery of his bone marrow) of Tim's stem cells and the transplant to Tom
• April 3, 2009: Graft expected to take place (the marrow sticks)
• April 17, 2009: Potential discharge from the "plastic bubble" wing of the hospital
• June 21, 2009: Rough estimate for the new marrow to be fully functional and productive
• March 13, 2010: Rough estimate for return to normalcy

I'll spare you more dry details for now. Thank you so kindly for keeping Tom, Gabriel and me in your prayers. We continue to have our understanding, of how far your prayers have reached, stretched. Much love, The Highland Park DuBranskys

P.S. A brief episode in the chronicle of my quest to discover how Gabriel is coping with his Daddy's Health concerns:

Last night, as we waited for the hospital to complete Tom's chest x-ray and blood test, Gabriel was sitting on the edge of Tom's hospital bed completing his Valentines for his classmates. He turned to me and said, "Are we really going to visit Kale soon?" I said, "Yes, as long as we all stay healthy. If you get sick we may not go, or if I get sick, or Daddy. Gabriel turned back to look at Tom, turned back to me and said, "Well, Daddy's in here. Can't we just go without him?"

On the other hand, Gabriel has been asking to come to our bed in the middle of the night again. Many of these times we've found him plastered to Tom in the morning. Recently I was telling my friend, Dawn, that Tom will find bruises on his legs in the morning where one knee rested on the other leg throughout the night (it's a low platelet thing-the bruising easily). Dawn predicted that we would find a Gabriel-shaped bruise on Tom's back soon. Tom, typically annoyed with Gabriel in the morning, found this visual hilarious. Dawn and I agreed: Kids are intuitive and our little guy wants to be close to his Daddy right now . . . except when he's willing to ditch him to hang out with his best friend, Kale.