What the Doctors Say
This is Jana, Tom’s wife. I am taking over Tom’s blog for the time being (better to ask forgiveness than permission, my friends say).
We have lots of information to share; some may be a repeat for you, but hopefully more clear. The doctors sat down with the family yesterday and made sure we were all on the same page about Tom’s condition. Their report is below, along with changes and improvements in the last 24 hours:
1. Tom’s altered mental status: this is not a coma, because he is responding to vocal commands and other environmental stimulus. It’s hard to find a word for it, and it’s not clear what caused it. This is possibly a persisting problem following a seizure but we are not sure. We do know, based on the MRI and the lumbar puncture, that there is nothing structurally wrong with his brain, and no sign of infection or lymphoma in his spinal fluid. We are treating Tom with seizure medication and waiting for him to wake up. He is getting better day by day, which is so exciting. Yesterday he started squeezing his hands and moving his eyelids when asked. By this morning he has started nodding appropriately to some questions and keeping his eyes about half way open a little longer. He was not yet ready for their neuro tests this morning (“Squeeze my hand every time I say the letter ‘A’…”) but we’re very encouraged by the rate of his improvement!
2. Tom’s lungs: he has severe infiltrates in both lungs; a couple days ago they were completely white on the xray, meaning lots of hemorrhaging, but they are improving with the administration of high dose steroid. He is breathing with ventilator assistance (intubated). He initiates a breath, and determines how deep a breath he takes, and the ventilator gives him enough oxygen to keep his gas exchange stable. We can extubate (take him off the ventilator) when he’s breathing a more normal mixture of oxygen (right now he needs about 50% when normal air is about 20%) and of course when his is awake enough to want it to come out.
3. Lymphoma: he is in the “leukemic phase” of his cancer. Cells are breaking down left and right, but the steroid is helping him fight while his lungs and kidneys heal. It reduced his white cell count (meaning the cancer is being fought off) by quite a bit yesterday. This helps hold some ground until he is healthy enough to handle chemo. The blood test this morning showed a bit of jump again in tumor cells, which is strange given the high level of steroid he’s receiving, but we’re going to keep monitoring him and get more aggressive with treatment when he’s ready for the fight.
4. Heart: he has pericardial effusion, or water around his heart. Every day they do an echocardiogram and consistently the water level has been stable (actually, the most recent one showed a slight reduction). It hasn’t put any pressure on his heart or affected its function, which is fantastic. The effusion is a result of the lymphoma, so the steroid is likely helping, but it won’t probably go away until we start chemo.
5. Kidneys: the kidney failure he was originally admitted for is no longer a concern. He’s been getting plenty of fluid pushed through, and all the labs show creatinine and uric acid are nice and low.
6. Anemia: Tom is anemic due to the lymphoma and just being generally ill. He is getting transfusions as needed to help him out.
7. Other stuff: Tom is getting lots of antibiotics/antifungals/antivirals because for awhile we weren’t sure whether there were infections causing some of his confusion and sickness. We were worried about pneumonia and other infections in his lungs or his blood, and we know he had at least a UTI (TMI?), poor guy! They’re weaning him off the antibiotics as labs come back and look nice and clear. Tom’s blood pressure and vital signs have remained nice and stable, even during the horrible confusion Weds night when he might have had the seizure. He’s going to be here @ Virginia’s Critical Care unit for awhile, getting the attention he needs while he works on coming back to us. Meanwhile, SCCA is working on testing his brother Mike’s blood to see if he is a match for a future marrow donation – the allogeneic stem cell transplant that he will likely get after chemo.
HOW CAN YOU HELP?
We have gotten so many wonderful offers of help from family and friends, and I feel so lucky that Tom does not have to go through this alone. If you are wondering what you can do, here are some things:
1. This weekend 3/19 – 3/20: email firstname.lastname@example.org with any great pictures of Tom, cool facts you know about him that you think strangers would want to know, and share any well wishes you have for Tom himself. Our dear friend Lauren is making a couple posters to hang in his room – one for the nurses, doctors, and visitors to read about Tom, and one for Tom to read when he wakes up. Please contribute ASAP!
2. Consider being a blood, platelet, or especially marrow donor. Without a doubt it would be impossible for Tom to get through this without the infusions of blood and platelets that he’s been getting, and down the road a bit a marrow donation will actually be responsible for rescuing him back to health with a brand new immune system. Someone, be it Mike or some stranger out there, will be saving his life. It could be me or you! All we have to do is sign up on marrow.org and they will send a swab kit for the inside of your cheek. Only when you are a match for someone will they call you and ask if you want to donate. You are able to help a specific individual who needs you! I will be working to organize an official drive in Tom’s name soon, but please check it out on your own if you are interested.
3. If you are in the Seattle area, you are welcome to come visit. Familiar voices should be helpful to Tom as he starts to wake up. We want to keep overall guests in the room to a non-stressful level for him, but a couple at a time is just fine. Just come to Virginia Mason’s 7th floor, Critical Care unit, room 27. Feel free to call or email first if you want to check that it’s a good time.
Thanks for your prayers and positive thoughts – I, for one, find great comfort knowing how much support is out there willing him to get through this. Tom has so much to live for!!!