Month: November 2013

This morning, we saw Idan shed his first hairs, a painful reminder of what he has been through in the past few weeks.  But as we say goodbye to Idan’s beautiful hair, we say hello to his new immune system.  Today, we dare to hope.

It’s been almost two weeks since the donor’s cells were infused into Idan’s bloodstream.  Now, we are seeing small signs that they may have made a home in his bone marrow.

There are a few levels that are being monitored on a daily basis to determine the success of the transplant.  The first and only one we need concern ourselves with for the next few months is his neutrophil count.  This is the first type of cell to grow from the donor’s stem cells. Yesterday, after being at 0 for the last two weeks, Idan had 50 neutrophils.  The doctors believe this is an early sign of engraftment – i.e., success – because it is around the time when we’d expect the donor’s cells (now Idan’s cells) to create neutrophils.  We won’t know for sure until Day 28 whether these cells are the donor’s cells growing, or Idan’s own immune system coming back, but given the time frame, the doctors are optimistic – and so are we!  The counts will bounce around a bit over the next few days (and may even go down as neutrophils commonly do), but once they exceed 500 and stay above 500 for at least two days, we will know Idan has engrafted and we will be discharged from the hospital.

Assuming this is indeed a new immune system, the next hurdle we have to be prepared for is graft versus host disease.  It can be acute or it can be chronic, and the levels of severity differ greatly from patient to patient.  We hope that in choosing Seattle, in choosing the treosulfan chemotherapy and an institution with the highest survival rate and excellent treatment of GvH, this will be a minor obstacle at worst.

As for the rotavirus, Idan remains asymptomatic, which means it has not affected him in the slightest – Idan is his usual cheerful and energetic self.  We are still in isolation because it can be contagious and everyone on this floor has a compromised immune system.  The rotavirus will still show up in his labs until he has a fully functioning immune system, so we may be discharged long before we’d be allowed out of isolation.

Thank you all for your continued prayers and support!  Many of you have sent gifts and toys to entertain Idan and they are tremendously appreciated.  We feel blessed to have gone into this transplant healthy and strong, and we owe Idan’s good health all to you.

All our love,

Amanda, Akiva & Idani

All fun and games have to end sometime. Yesterday afternoon we found out that Idan tested positive for the Rotavirus. It was just as we came back from a fun lap around the floor with Idan dressed up as a vampire, walking around flirting and blowing kisses to all the nurses. My joke of course was, “I am count Dracula, I am here to suck your bone marrow!” Very funny, Akiva.

We were very surprised about the news, as Idan has been asymptomatic and did not have diarrhea. Nonetheless, it was very scary to hear, as they changed the rules for our room and put us in contact isolation. This means all the nurses and staff have to gown up and put gloves on before they can enter the room. They want to make sure to contain the virus and not pass along to anyone else on the floor. Sadly, having the Rotavirus means also losing all our privileges. Idan cannot leave the room anymore to walk around and see his fans and practice his walking. Amanda and I cannot use any of the common rooms, so no use of the kitchen in the family room, or even go to the complimentary coffee cart that comes by every afternoon.

We have been fortunate so far that Idan’s virus looks like a mild strain, but it is also possible that they caught it at the very beginning and it is going to get worse as days go by. The main symptoms are diarrhea and generally feeling run-down, but he can also come down with a fever and runny nose. There is no way to know if he got the virus now, or if it is a reactivation of the live virus vaccine he got when he was 4 months old, in which case it was just waiting to come back once he had no immune system left. (As a side note, this reaffirms our decision to go into transplant so soon – if he could reactivate a virus he received by way of a vaccination, then years worth of infections and other viruses would pose an even more significant threat during transplant.)

For now, we can control some of the symptoms with more IVIG and fluid replacement if necessary, but we’ll have to wait until his donor cells start working until he can clear the virus himself. So they gave him an early dose of IVIG to help with some of the virus, but they do not know how much that works. One option if he does start having bad diarrhea is to have him drink a bit of the IVIG as well, it tends to help.

The next two weeks will obviously be harder than the first two with this new development, but the very good news is that Idan has been doing so well and is going into Day 9 free of any infections or side effects from the chemo, so he is more than strong enough to fight this virus until the donor cells start coming in, which should be only about a week or so from today.  In the meantime, if you have any ideas for how to occupy an energetic toddler in a room 24/7 for the next couple weeks, send them along!