I still can’t believe it’s come to this. About a week and a half ago, Tom started to get very sick again. His lungs started to get worse, and he got very delirious. We sang to him, held his hands, and assured him there was no evil plot or virus out to destroy him and our phones. It wasn’t enough. His breathing and oxygenation got worse, and he needed to be re-intubated. I convinced myself it would be temporary — a couple days at the most — because his immune system was just returning and he’d be able to fight whatever was in his lungs and come back to start another round of chemo in no time.

This was not to be the case. His lungs continued to worsen, and the doctors started explaining that Tom had ARDS, and they were doing everything they could but Tom may never heal. I still didn’t really listen. I knew Tom could pull it together in time. They put him in the Rotoprone bed which allowed him access to more viable tissue in his lungs. It immediately improved his oxygenation, but still he couldn’t find his way back to us. Dr. Chen, his oncologist, explained to me yesterday that his cancer, though beaten into remission now, would likely come back in a manner of weeks. It was a dangerous, aggressive, take-no-prisoners kind of cancer that wouldn’t give Tom a break long enough to heal. There was no way he would handle another round of chemo, and no way he would breathe on his own again. Out of compassion, the doctor said, we needed to start thinking what Tom would want. Would he want to suffer, knowing his cancer would return before he could wake up and live his life again?

Our family gathered and discussed over the long weekend hours. Tom would be in pain if we weren’t giving him truckloads of narcotics. Anytime he woke up, he would face the terror of being unable to speak, see, or move in the Rotoprone, not to mention the delirium from the Versed. His lungs would stop working if we took him off the bed, and he wouldn’t heal in time to do more chemo, so the cancer would be free to come back to start its torture all over again. We decided Tom would side with logic and reason, and see that he had met his match with this awful lymphoma. He would be sad and scared to die, but would not want to suffer if he knew he had lost his fight.

We thought we’d try to hold off for a day and let everyone come say goodbye. But the doctor wisely asked… do you do this for Tom, or for yourselves? And we knew it was us who wanted the extra hours with him, and that Tom was suffering and we needed to stop it. Our family and legions of caretakers assembled and we all said goodbye… and the doctor pulled out his tube around 5:00 PM. The nurses, respiratory therapist, and doctor all helped us surround Tom and let him go. I can’t tell you how amazing the staff in Virginia Mason’s CCU were. Our nurse Sally actually came and rubbed my back and lifted my hair away from my face so that I could continue to just hang onto Tom’s hand for dear life. He passed very quickly, never even taking a breath after they turned the ventilator off.

This is so hard. It’s so wrong. Tom was a million wonderful things to all of us. He deserved to stay here and keep doing amazing things. I hope he continues to inspire and motivate each of us to keep being better people. Tom wasn’t really religious, but he believed in the goodness of humanity and the existence of something greater that made everything work. I am not religious either, but I like to think that Tom is somewhere… no, everywhere, soaking all the knowledge of the universe right up, and loving it. Learning and understanding things was one of his passions, and loving all of us was the rest of it.

Please join me for a vaguely Irish-style wake in Tom’s honor this Friday night, April 22, 8:00 PM, at the Rat and Raven in the University District of Seattle, where we can raise a glass and say Slainte! and tell tales of the great man we knew.

I also invite you to Tom’s memorial service which will be Saturday, April 23, in the afternoon… details pending.

Tom’s doctor and oncologist sat me down this morning and explained that they want to start chemo today. He cannot survive on his current trajectory much longer. His lungs have healed somewhat, but he still cannot breathe without some ventilator support. He is also not absorbing as many platelets from his transfusions now, meaning that he is at a real risk for bleeding without being able to stop.

The doctors wanted to warn me that there is a “real possibility” that Tom will not survive chemo. When I asked what that would look like, they said that when he is neutropenic, which will be about 5 days after starting chemo, that he could get a serious infection, like sepsis, or start spontaneously bleeding. There is not much we can do – that we aren’t already doing – to make him more prepared for this fight. As I understand it, this doesn’t mean it’s a done deal… we just need to be prepared for how dangerous this is for him.

I love how supportive everyone has been, and if he wakes up enough in the days ahead I will read all the comments folks have been sending via email, Facebook, and on this blog. He knows he is loved, and I can only imagine how much that is helping him fight. Thank you all so, so much. Please continue to send good thoughts and prayers for the true battle that lies ahead. We’ve been waiting long enough – it’s time for this showdown!

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 lauren.heitmann@gmail.com 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!!!

Then there was a bunch of stuff that would sound gruesome if I wrote it out; he took a little bit of bone marrow, a little bit of bone, and it really hurt (but the hurt was in short bursts).

Also, my hip bone was so strong that it bent the tip of the tool he used.

Now I have a band-aid on my hip and it hurts to walk. Looking forward to a (hopefully) negative result!