Transplant Day

Matthew had his stem cell transplant today. The stem cells that were harvested from his body last August have been in deep freeze until now. They were delivered inside a sealed pouch (see right) inside a metal box inside a freezer canister and thawed out in a warm water bath. The pouch is then hung from an IV pole and the contents are infused into his body through an IV line. The whole process takes about 15 minutes and would seem altogether anticlimactic, if not for the fact that those cells are critically needed to replace his entire immune system. Without them, one could not recover from the chemotherapy.

Matthew is feeling really well at the moment. He had three nights of chemotherapy last Wednesday, Thursday & Friday and spent the weekend resting up. Jon stayed in Baltimore and I went home to be with Daniel. It felt a little strange to be home (first time since New Year's Day); sad to say, but at this point I think I'm more comfortable living out of a suitcase than sleeping in my own bed.

Thankfully, the pediatric oncology unit has become a much more comfortable place to stay than it was a few months ago. First off, the floor has been renovated so that all of the rooms are now private rooms. Second, they have replaced the horrid cafeteria food with a room service type program, where all of the peds onc patients can order the food of their choice off a menu at any time of day - and it gets individually prepared in a private dining room and delivered to the room. Interestingly, the docs are noticing that their patients are losing less weight and doing much better nutritionally since the new program was initiated. Funny how that works!

I am sad to report that J0n's dad, Larry Grossman, passed away Friday, January 13, just 10 days short of his 82nd birthday. Jon, his mom, Bobbie, sister Ilene and brother Carl are all doing ok. The family held an informal memorial service in the home on Saturday night. There will be two shiva minyans in Bethesda. In addition, there will be a formal memorial service at Johns Hopkins University (where Larry was a biochemistry department faculty member and department chair for many years) in about a month's time. Please contact Loren Amdursky (nelseh@aol.com) for details. To read about Larry's amazing life and impressive contributions to the field of DNA repair, see the
Johns Hopkins Bloomberg School of Public Health website.

As you can imagine, we are all going through a great deal of stress, both from the week that passed and in anticipation of the week ahead. The weekend brought family members together from many parts of the country, so at least we all had an opportunity to be together. It was a challenge to allow Matthew to socialize and participate, while at the same time trying to keep his fragile immune system safe from germs. On Saturday, he sat in an upstairs bedroom of Jon's mother's house with a mask on his face. Family members were allowed to visit him a few at a time - but only after they, too, donned a mask and lathered themselves in Purell. For the service, he came downstairs, sat apart from the crowd, and performed the Beatles tune, "Blackbird" on the guitar along with his Uncle Carl.

This is the week that Matthew goes back into the hospital for the second round of chemo and transplant. We are heartened by results of the latest tests and by Matthew's strong recovery from round one. At the same time, we are of course apprehensive about what lies ahead. If we've learned anything, it is to expect surprises.

Temporarily Free (sort of)

Matthew recovered quickly enough from the chemo and stem cell transplant that he was released from the hospital this past Wednesday, only 14 days after his transplant. He will recuperate for a couple of weeks before returning to the hospital for a second round of treatment (chemo and transplant).

We are required to remain within 20 minutes of the hospital at all times, which means we cannot go home. Cousins Brett & Elizabeth have graciously offered us their spare bedroom. So Matthew & I are now ensconced in a beautiful condo on the waterfront close to downtown Baltimore and just around the corner from the hospital. Brett & Elizabeth are relaxed hosts and wonderful company, and we feel grateful to have them.

Although it always feels good to leave the hospital, last week was stressful, as Matthew was released in a greatly weakened state and under all kinds of restrictions. Over the past few days, however, he has come a long way and now has much more energy. My focus is on getting him to eat as much as possible to try to recoup some of the weight he has lost over the past weeks. We're currently on a two-hour eating schedule!

Jon & Danny came up on Friday - and the four of us went off to a downtown hotel to have some close family time. We spent the weekend playing Red Sox Monopoly and visiting with Jon's family. Jon's sister Ilene and her husband Greg are in from Chile. The family is all on alert, as Jon's dad is sadly fading.

We are trying hard to keep up our spirits, although this is definitely a tough time. The last treatment was rough on Matthew (as strong as he is) and we have only a brief interlude before it starts all over again. We have to report to Hopkins every other day this week for check-ups and tests, which means we will constantly be on the edge of our seats waiting for the results. We anticipated this would be a difficult time - and so it is.

Happy New Year

The past week has been extremely emotional and intense for our family. Last Sunday, Jon's dad was taken to the emergency room of Sinai Hospital. He had been in rehab at a local nursing home, recovering from hip surgery following a series of accidents over the past few months. However he developed a fever last weekend and arrived at the hospital severely dehydrated and unresponsive. Unfortunately his condition has deteriorated since then and he is now receiving hospice care. Jon's siblings, Ali, and other family members gathered in Baltimore over the weekend to be at Larry's bedside and to help support Bobbie.

At the same time, this was a critical week for Matthew. The week following transplant is always the toughest week for bone marrow transplant patients. Matthew apparently made it through pretty easily, according to the doctors, but still had to endure major challenges. He had frequent, massive nosebleeds which would not stop due to his low platelets and which necessitated almost daily transfusions. He was pretty tired most of the week and had difficulty eating due to mouth sores produced by the chemotherapy. He was on a lot of medication and slept a lot. He also had some high fevers, which were pretty worrisome. Through it all, he has maintained his incredible
attitude and barely expressed a complaint.

By yesterday, he was feeling much better and able to eat and move around. He had visitors during the day; and we were able to spend the early part of New Year's Eve evening all together. Most importantly, his blood counts are trending up nicely, indicating that his body is recovering well from this cycle of chemotherapy. Once he is completely recovered, he will have a brief break and then we expect to start all over again with a second chemo cycle, followed by a second transplant.

This was also Danny's winter break week. He had playdates with friends, spent time with Jon & me and other family members, and visited with Matthew in the hospital. It wasn't exactly a vacation, but I think he had an ok time. It's tough for all of us, but perhaps especially for him.

Given the intensity of our lives right now, it's hard to think very far ahead. However, we certainly are hoping and praying for a better year than the one that just ended. Wishing all of you a happy new year and, most importantly, a healthy one.