Tag: PID

Idan in the SCCA House Play Room

So we got our schedule for next week. The good news is that Idan will not be admitted to the hospital except for the day of his DLI and it’s only a day admission so we can most likely go home that night. The bad news is that next week is going to be a living hell for the three of us.

Here is a summary of our week:

Monday: Kidney Test: We have to be at the hospital at 8:00 a.m. for a kidney test. This requires Idan to fast the night before, and he can’t eat any solid foods until after the test is over —- 8 hours later. So for approximately 16 hours, Idan will not have anything to eat. During this time, they will be placing two IVs, one in each arm, and taking blood from one arm while infusing a solution into the other arm. This test is required to measure the dosing of the pentostatin, the chemo drug he will get on Wednesday.

Tuesday: Picc Line: Another day of fasting all day. The only slot available was for 3:00, and Idan cannot eat anything after 7:00 a.m. We have to be at the hospital by 1:45 p.m., and will have to endure over an hour of waiting before the procedure starts.

Wednesday: Chemo infusion at 10:45 a.m.: 5 hours at the clinic during which Idan will receive a continuous infusion of liquids and the chemo will be infused a couple hours into the visit.

Thursday: Break.  Whew.

Friday: DLI: We’ll be admitted to the hospital first thing in the morning, Idan will have a couple hours of hydration and then the DLI. After he will be monitored until late in the day/evening. We should be discharged by nighttime.

The following week we’ll have a couple clinic appointments to check for GvH, but they don’t expect to see anything for a couple weeks. He’ll have his picc line removed some time that week (or potentially after the DLI friday, but we have to see how many pokes he has lined up for the following week before we decide when to remove it).

If anyone has any ideas of how to keep a starving two year old who is confined in a room and attached to IVs happy and entertained, we’re all ears.

Just when we thought everything was going Idan’s way, six days into a happy family trip to Seattle for Idan’s yearly follow up visit post-bone marrow transplant, we received the troubling news that his graft started slipping again.  A chart of all of his chimerisms to date showed us in black and white that, if we follow the same course, we are looking at second transplant or going back to Idan’s horrible disease.

Looking at the chart, Akiva and I were absolutely crestfallen.  The doctor presented us with a few options: either fiddle with the immune suppression and hope it is enough to turn the tide, do a second donor lymphocyte infusion (DLI), or throw our hands up and go into a second transplant.  We chose the second option, a DLI.

So next week, pending insurance clearance etc., we will be admitted into Seattle Children’s Hospital for four days for what can only be described as a mini-transplant.

Before he is admitted, Idan will have a Picc line placed in his arm, similar to the central line, which he will need for the remainder of his stay in Seattle.  On Day -2 of the hospital stay, Idan will receive one dose of a chemotherapy drug called Pentostatin, believed to help aid in engraftment and prevent graft versus host disease (GVHD).  On Day 0, Idan will get his DLI, which is an infusion of the same donor’s t-cells that they’ve been storing for us since his first DLI.  The hope is that the new t-cells act as reinforcements in the battle over Idan’s bone marrow taking place between his own cells and the donor cells he received during his transplant last year.  Idan will hopefully be discharged on Day 1 or Day 2 if all goes well.  There is a 50/50 chance that this will work.  There is a good chance he will get GVHD, which could occur in the liver, the skin, or the gut.  A little bit of GVHD can help bring in the graft, but too much could be deadly.  Idan will need to be in Seattle for approximately two weeks (if all goes well) of monitoring before we’ll be allowed to take him home to New York.

Time can only tell whether we’re making the right choice going forward with the DLI, but in many ways it feels like the only choice.  If we watch this graft slip away, as we have been doing for the last year, and do nothing, we are facing a much harder choice of doing a second transplant or reverting to Hyper IgM.  There is no guarantee this works, and it may do more harm than good, but it’s the best shot we can give Idan’s donor cells to keep fighting for a permanent home in Idan’s marrow.

The weight of these decisions that we’ve been making since Idan’s admission into the hospital over a year and a half ago has taken its toll.  Akiva and I spent several sleepless nights here wondering whether we are risking it all for what has proven to be a poor match, or whether this is our last chance to save the day by grabbing hold of these donor cells, giving them a good shake, and demanding they stay.  We agonize over the effect this will have over Idan.  He’s such a happy good natured little boy, but lurking beneath the surface is very real fear and anxiety that no two-year old should suffer from.

As we were processing the information about Idan’s graft, the doctor went on to answer some of our other lifestyle questions, and surprised us by saying Idan’s immune system, while in a precarious state for the foreseeable future, is actually functioning surprisingly well right now (yet another reason to do everything we can to hold on to this graft).  He is now free to go to the zoo, to a museum, to the aquarium, to have playdates with other healthy children his age, to give his baby cousin hugs and kisses without abandon.  Both Akiva and I released a collective sigh of relief, and I burst into tears for the second time during that meeting.

Although a dark cloud hung over us, the next day, when we took Idan to the zoo for the first time since his diagnosis over a year and a half ago, we felt pure joy.