Month: September 2016

Well, it finally happened. After three months, a wave of homesickness came over me like a dark cloud last night. This hospital stay marks Idan’s fifth. It’s the third one where we are searching for a diagnosis. With every hospitalization comes the fear of not knowing what happens next, what side effects will develop, what tolerance Idan will have for the pokes and probes, and of course, the enormous amount of energy it takes to put a smile on our faces and all push forward together through the raging fire of illness. So when I took a break and went back to our Seattle apartment last night, I broke down. It all came flooding back to me the second I opened the door to the apartment. The wave of sadness at the realization that Idan, who has been looking forward to his grandparents visiting from Israel since before we even left for Seattle, is now confined to a hospital room during part or maybe all of their stay. The frustration of coming so close to getting to go home to New York, to not knowing how this set back will affect the length of our stay. The worry and exhaustion of not knowing why his fevers are persistent and sneaky, as though playing with his little heart strings. The hour Akiva and I spent pleading with Idan to take his oral meds without vomiting, trying desperately to undo and reverse the negative association with taking medications in the hospital, after finally getting him past it not so long ago. How cold and empty our apartment seemed last night without the sound of his chatter and giggles filling the rooms. It felt like hitting a wall. 

I broke down so I could put the pieces back together. Remind myself of what we are doing here, remember our strength and all we have been through since the day Idan was intubated in 2013. Piece by piece, reminding myself of all the lows, and how those very same lows led us to all the highs. Idan’s graft is excellent and he is in good health (fevers notwithstanding), and every time he gets knocked down he keeps getting up. It’s no coincidence that Idan keeps singing these lyrics from a Pink song: “You gotta get up and try, try, try, you gotta get up and try.” His resilience astounds me and gives me all the reassurance I need to get up and try. 
Today, Idan’s temperature is *hopefully* showing signs of lowering, and his C Diff appears to be in check. And just in time to really raise our spirits, a couple of surprise visitors showed up at Idan’s door this morning – two of Seattle Sounders’ soccer team players. Idan was jumping up and down with excitement! He asked them a bunch of questions (mostly about numbers – how many players on the team, what player has the highest number, you get the picture) and showed off the soccer field he randomly decided to build with his Plus-Plus yesterday. The soccer players were very sweet and found all his questions pretty amusing. Yes, we’re all starting to feel homesick, but it was a great reminder of how incredibly lucky we are to be here in Seattle and at such a great hospital.

So after our very happy post last week, we are having a bit of a set back. Last night, Idan spiked a fever of 101.3, so we had to get admitted back into the hospital for observation. One of the many precautions we take post-transplant is to take Idan’s temperature twice a day. For the last few nights, Idan has had higher temperatures in the evening, high enough on Saturday to prompt us to call the the doctors and pack our bags to go in. Each night it had climbed to 100.3 but then went back down to normal during the day. We had a feeling something was going on but it took a couple of days to present with higher fevers. On Sunday, it finally did, with a fever of 101.3. Not high for healthy folks, but alarming for transplant patients.
We were admitted to the hospital late Sunday night, and have been told to expect to stay at least 2-3 days. When we arrived late last night, they took blood cultures and CBC’s. With transplant kids they don’t wait to find out and they started him immediately on IV antibiotics while we wait a couple of days to see if his blood cultures grow anything. We do not know the cause of the fevers yet.

Now we play the 48 hour vitals game. We need to go 48 hours without spiking a fever. So if he stays below 100.3 for that long they will let us know. He last spiked a fever at 4am, so we reset the clock at that point and hope for he best. Hoping this is not anything major and just a small virus or bacterial infection that can be treated well with the IV antibiotics.

We are happy and thankful that Idan had been feeling himself and is happy, energetic and has no other symptoms. His grandparents are arriving today for a planned ten-day visit so he is excited for that and they will help entertain him.

With any luck we will get out before the weekend and Idan will be able to share his favorite Seattle spots with them.

And on the bright side, we finally got that room with a view we always wanted.

The greatest joy in my life as a mom so far may just have happened a short while ago. After putting my phone down following a conversation with the clinic, Akiva and I walked into the living room to find Idan reading a book sweetly to himself. We shared with him the good news that his donor cells have continued to grow and now he has ***even more*** healthy cells than he did before. 96% donor T-cells (up from 92%), 100% donor myeloid cells, and 95% donor NK cells (up from 89%), to be exact. His facial expression went from “why are my parents acting like fools” to comprehending that he is one step closer to his dreams coming true. 
 

At the ripe old age of 4, Idan knows what it means to have Hyper IgM. He hides behind us if we are outside and children walk by. He sits down on chairs with his hands on his lap at all times so as not to touch anything. He dislikes watching videos of concerts and other activities where there are large crowds. He looks sadly at children playing – in the sand, on the grass, on the playground, in a swimming pool. He quietly asks if he’ll ever be able to go to a real school. Today, we got to tell him that, one day in the not so distant future, that will all change, and we get to really believe it. 

We still have a long and treacherous road ahead to make sure that Idan stays healthy and that GVHD does not develop, and we will not know for certain whether Idan is cured until we can put his new donor cells to the test. But we do know one thing that we did not know the first time around – Idan has a great graft, and his chances at a cure are looking better every single day.

Just a quick update on Idan’s strange cold symptoms. He has had a cough since the weekend. It is most pronounced at night. During the day he seems totally fine with just a few coughs here and there. Monday morning they did nasal and throat swabs for viruses and all came back negative. Monday night, he spent the whole night coughing and then was fine during the day. So on Tuesday morning we did an X-ray to make sure there wasn’t something else going on and the X-ray was clear as well.