Tuesday, August 28, 2012

Day +104: Hanging In

Thank you to everyone for your messages to Ezra that he feel better - they are much appreciated! After a rough week, he is doing better with the pain from the mediport surgery. They accessed the port for the first time today. He had some anxiety and tears, but with the help of numbing cream, he did not seem to feel the needle going in. We are hoping that with time he will get used to the process. It has to be accessed each time we come to clinic, which for now is still several times a week, so there are lots of opportunities for him to get used to it (unfortunately). Clinic is exhausting (as you can see), but at least he has his friends with him.

We've been trying to keep him busy at home with different projects and activities. He loves helping Mommy and Bubbe cook and bake. Chocolate chip-sprinkle cookies are his specialty! He has started to ask to go places like the park. It's really heartbreaking to say no, especially when there is no sense of when he will be able to return to his pre-transplant (still limited) activity.

The plan is still to wait until he is off the immunosuppressants before re-testing for donor cells. The doctors are doing a very, very slow taper and it will be a while before he is off them entirely. Usually Day +100 is considered to be a transplant milestone when the immune system starts to kick in more and some of the post-transplant risks become less likely. No celebrations for us on this Day +100.

Monday, August 20, 2012

Day +96: Mediport surgery

After a very long day, Ezra is home recovering from the mediport surgery. The surgery was almost called off right before he went into the OR by the surgeon who had concerns over Ezra's platelets. After much delay, the transplant team and the surgeon agreed to proceed with the surgery. Our brave little trooper is in a lot of pain. There was some debate over admitting him, but thankfully he was discharged this evening. We are hoping that the pain lessens by the end of the week and that he heals with no major issues. Another week, another challenge for our rock star.

Friday, August 17, 2012

Day +93: Three Long Months

Today marks three months from Ezra's transplant. He had a clinic visit today and the doctor was talking about how well he is doing. No infections, no graft versus host disease. He's eating and drinking well - even trying new foods (case in point, here's a picture of him trying pizza for the first time-finally!). He has energy and his labs look ok. Basically, we are back to where he was before transplant except that his immune system is in worse shape. His neutrophils still aren't as high has they need to be and he is still not making platelets and remains dependent on transfusions.

We are extremely grateful that Ezra is doing so well at this point. If the transplant was failing and he was sick, this would be an entirely different situation. The plan is still to just taper off the immunosuppressants and see if that makes a difference in the number of donor cells. They are tapering these drugs very, very slowly because, as one doctor explained, you can get graft versus host disease from just 1% donor cells and once you get it, there's no turning back. They won't check for donor chimerism again until after he is off these drugs.

Ezra is scheduled for surgery on Monday to have a mediport implanted. He still has his temporary central line, which can't stay much longer. The mediport goes under the skin and is accessed with a needle from the outside. The area will be numbed beforehand each time it is accessed. It is much less intrusive than the central line, has less infection risk and will allow Ezra to take baths. We know it will take some getting used to for him, but child life has armed us with lots of resources to try and explain this new "button" that will be under his skin. The surgery is more invasive than the procedure for the temporary line and requires more time under anesthesia. We are expecting him to have some pain for a while afterwards, but are hopeful that the mediport will ultimately allow him more freedom. We will let everyone know how he is doing after surgery.

And please keep up the prayers and positive thoughts for those donor cells to grow. We are still hoping for a miracle.

Friday, August 10, 2012

Day +86: Falling

Originally, Ezra's doctor had said that she wanted to wait a while before re-testing his chimerism. She changed her mind and re-ran the test at the end of last week. The results now show that Ezra has only 3% donor cells.

The plan for now is to slowly taper off his immunosuppressive drugs. These drugs are used to prevent graft versus host disease, but they work by suppressing the immune system. The thinking is that the donor cells may be able to grow without these drugs interfering. But the same is true for his old immune system that is right now winning this battle. Ezra's old cells will also enjoy the benefit of no immunospressive drugs.

If there is a battle going on inside him, the underdog is struggling. His doctor says that until the tests say he has no donor cells, she believes the donor cells can still grow. She says she has seen this happen with other patients. But we don't need medical degrees to know this is highly unlikely. If these donor cells are going to win, it will take a miracle. They will re-test the chimerism after the immunosuppressive drugs are tapered off

Words don't do justice to how we feel. Susan, a friend whose little boy also went through transplant for Hyper IgM, gave us this wise advice: Deal with what is happening today as that is the only thing that is real. We are trying to do that, but at some point soon, Plan B, if there is a Plan B, is going to have to be figured out. So many of you constantly ask what you can do. For now, all that can be done is to pray and send positive thoughts for those few donor cells to grow.

One positive note: Ezra was negative for parainfluenza virus today. So some part of that broken immune system is doing something.

Thursday, August 2, 2012

Day +78: Sick time, Swing time

Ezra has had a cough for the past week or so. Ends up that he has parainfluenza virus - basically a bad cold virus. There's not much to do about it, except watch him closely to make sure it doesn't get worse. So far, he's holding steady and we hope it stays that way. Mommy also presumably has the same thing, so it's sniffles all around in the Fineman house.

Ezra's donor chimerism will not be tested again for a couple of weeks. The doctors want to give it more time. We will keep everyone posted.

On a fun note, Ezra now has his very own swingset. One of Ezra's favorite activities pre-transplant was going to the park. In the rain, in the snow, and sometimes twice a day Ezra went to the park. For now, public playgrounds are off limits. We were/are afraid that he will be heartbroken over not being able to go to his beloved park. So, in an effort to distract him from what he is missing, we bought him a swingset for our backyard. The swingset came while we were still in the hospital - the issue was finding the time to construct it with our crazy lives. Our wonderful friends Lisa and Brian solved that problem for us. They arranged for Bonim Builders (basically a Jewish Habitat for Humanity) to send an incredible team of volunteers over to build Ezra's swingset. With those volunteers, our super handy friend Joe (Ezra is still saying "Joe is in charge"), and Daddy's persistence through a thunderstorm, Ezra has his dream swingset. He is thrilled. He has also caught on to our intention of providing a substitute park. He promptly declared his swingset "Ezra's Park" and wants a sign for his park. Once again, we couldn't have done it without everyone's support. We continue to be truly touched by all the different ways that people have reached out to help us through this scary roller coaster time of our lives.