Idan, my hero

Just barely 4 years old and yet this conversation happened today, just after his fever spiked again:  
Me (Amanda): “Idani, which friends were you talking about yesterday when you said ‘it’s ok to be sick because you get to meet new friends?’ Were these friends the nurses? The CNA?”

Idan: “No. I was talking about the friends I will meet when I go to an outside school that’s a real school.”

In one sentence he manages to break my heart into a million pieces and put it all back together again. He is all too aware of the purpose and goal of the transplant (perhaps more than we know), and he is therefore willing to endure the pain and significant discomfort because he sees a better future for himself. So do we.

It’s been an eventful 24 hours since Idan started his stem cell infusion yesterday. The cells were infused over the course of a few hours and towards the end Idan started to feel bad and spiked a fever. No way of telling if it was the infusion, the week of chemotherapy and ATG or a new virus/bacteria affecting him now that he has zero immune system. The took blood cultures and gave him Tylenol to reduce the fever. He was pretty tired and not in the best mood the rest of the day yesterday. Around 3:30 AM he woke up upset and spiked another high fever. He took his Tylenol well (getting him to take his oral meds has been a challenge) and went back to bed. At 5 am they gave him a red blood cell infusion as those counts have (predictably) dropped significantly in the last couple of days. 

Today he has been enjoying lots of birthday celebrations. The first thing he wanted to do when he woke up was unwrap some of his presents. He also asked us if, because it’s his birthday, will the nurses give him a break from checkups. Sadly he does not get that break. But they did all come in and sing him happy birthday which was fun. Then another hospital volunteer brought by another big bag full of gifts. A very special nonprofit called The Confetti Foundation organized a whole array of birthday goodies and decorations and a special delivery of cupcakes from Cupcake Royale. Idan insisted that Amanda stay up late the night before decorating the room so it would be ready for him this morning. He then stayed up and watched, announcing he was “too excited to sleep.”
Sadly, the week of Chemo, the lack of immune system, the fever, and a very itchy rash (likely a side effect of chemo) has taken a toll on his mood. He has been very cranky and tired today and, although wanting very much to celebrate, he has just not been feeling up to it. 
Thank you for everyone that organized and sent him gifts for his birthday. In addition to a very fun session with music therapy where insisted that the musician sing 7 Years by Lukas Graham, unwrapping these gifts and seeing the cupcakes and decorations brought him a great deal of joy and are helping him through a rough couple days. 
We will end with a sweet line he send yesterday after all the commotion of transplant and not feeling well. Before he went to bed he said: “Mommy, it’s ok to be sick because you get to meet a lot of friends.”

Glad he knows how to see the positive in everything.

Day -1: All over again – Quick update on transplant timing. We heard from the transplant team today that the donor cells will only be arriving at the hospital tonight around 11:30PM. They then need to treat it which takes a few hours. So they have now scheduled the transplant for tomorrow morning (Tuesday). So instead of today being Day Zero it is day -1 all over again. A bit of a Groundhog Day affect but that’s transplant for you!

Day -1: Rest Day: They call this day the “rest” day because it is a day of rest after five consecutive days of chemotherapy to destroy all the stem cells in Idan’s bone marrow to make room for the donor cells. His counts have been dropping. His lymphocytes (mostly T & B cells) have been at zero for a few days and his red blood cells and platelets are getting pretty low, so he will need a transfusion in the next day or so. This is all to be expected as we have knocked out the factory in his bone marrow that produces all his blood (white and red cells alike).”rest” is a bit of a misnomer as it really just means rest from the chemo. As far as Idan is concerned, it was just like all other days, tethered to an IV pole and nurses attaching different meds throughout the day. Today we started a new immunosuppressant, Tacrolimus, that will help reduce the risk of severe GVHD post transplant. We are very familiar with Tacro, as Idan was on it for over a year last transplant. It is tough on the kidneys so he has to get a lot more fluids. His target fluid intake is 50 oz. Think about yourself or your children and then imagine how many cups of water one usually drinks a day. That is over 6 cups of water. This will most likely mean that when we are outpatient we will have to continue Idan’s IV fluids for a while longer unless we can get him up to that Intake number. Not so fun. 

He spent the day playing a lot with his grandmother and grandfather who are here until tomorrow. This gave Amanda and I some time to pop out of the hospital and take a break and enjoy some of the nice weather we had today in Seattle. 

Overall Idan has felt ok today and no major incidents. His mood has seen better days and we had a few melt downs, mostly about not wanting to take his oral meds. On the bright side, Dr. Idan had a lot of appointments today and as you can see from the photo below, he performed a transplant on Amanda today. Notice the professional touch on taping that syringe onto her leg. Not bad for a soon to be four year old.

Day -2: “Why is this happening to me?” – the question every parent of a sick child dreads. After a wonderful day with his grandparents yesterday, Idan had a hard time falling asleep. From midnight to 3:45 am, Idan was awake and restless, and then, for the first time this week, the inevitable wave of sickness from chemo took over. It was a big scene for the little guy, with the nurse and CNA rushing in swiftly to change sheets and begin the course of extra anti-nausea meds, and he understandably was more in shock and fear than anything else. He repeated in between sobs, “why is this happening to me”? And, in that moment, my job was never harder. We have explained transplant in so many ways to Idan, trying to prepare him for this process without frightening or alarming him, but, in that moment, having to explain to my baby why “this is happening” crushed my heart into a million pieces. The right words seemed to have come to me, because Idan relaxed, snuggled sweetly in my arms, and slept peacefully. This morning, he understandably did not really want to eat anything for breakfast. We went offered him Belgium waffles, cheerios, a banana, yogurt, milk and water, and everything tasted strange to him. Until of course he was offered a Blueberry muffin, which he promptly devoured. The rest of the day, my little resilient hero has once again been full of energy, eating and drinking (albeit with a more cautious/limited appetite). He proudly told his grandparents all about the story of how he was awake in the middle of the night, how he got sick, and how we passed the time until he finally fell asleep. Thankfully, Idan finished his course of chemotherapy conditioning today and tomorrow is his rest day. The rest of the week is going to be exciting with his transplant on Monday and his birthday on Wednesday. Thank you to all those that have donated to the Hyper IgM Foundation in honor of Idan’s transplant. You are all amazing and your support will go a long way towards finding a cure!

Day -3 – Much improvement: Today it seams like Idan is feeling a lot better than yesterday, at least as far as his neck and central line goes. Yesterday he napped for a few hours in a position that may have given him a much-needed stretch. And, even though he could not fall asleep last night until 11:30 pm, he woke up this morning full of energy. He is moving his neck almost like normal and opening his mouth again. Of course this is all temporary as we expect the chemo and ATG to start decreasing his energy levels over the next few days. He enjoyed a very fun scavenger hunt with the PT and OT that aimed to get him moving and reaching (clip coming soon). He tolerated his second dose of ATG well so far and only has one more day of chemo tomorrow. In the meantime, he is thrilled to be reunited with his grandparents who have endured multiple appointments from Dr. Idan 🙂