Quick update as we both need to get to sleep tonight so we have energy for tomorrow.

Day -2 was a hard one. Idan seemed to be restless and in a lot of pain. I had spent Saturday night with him, and he was up from 2-7AM and ended up needing morphine to calm down and finally be able to sleep. We are still not sure what the cause of the pain was, but, being on both chemo and ATG, this is expected. I then went home at 8 to take a quick nap while Amanda and her folks stayed with Idan. He did not have a good morning either, still in pain and spitting up his meds. By the afternoon though he seemed to be a bit better and was able to be cheerful again. It was the last day of chemo and ATG and we were looking forward to a day of rest.

Day-1 was a good one and did almost feel like a day of rest. He was mostly happy and playful, but definitely a hand full. His neutrophils dropped significantly and he started antibiotics to give him protection. He also got his first transfusion of blood, and will need those until he starts creating his own blood again once his new bone marrow comes in. We had some good fun on the bed later in the day as you can see here:

Tomorrow, October, 22 is Day Zero, and we have been told that the donor’s bone marrow should arrive in the hospital late at night. The transplant will take place around 11PM and go into the 23rd. So they said we will have two day zeros and day 1 will only be on the 24th. As it is written in the Book of Genesis, “On the third day of creation the Lord said “It is good” twice.” We take away that Tuesday is a good and lucky day, one that is good twice. Personally, I had my brain surgery on a Tuesday so I am happy we transplant tomorrow and have a double “good” day zero. 

Thanks all for your prayers and thought and wishes!

Day -3, and still happy. Supposedly the steroid they gave him before the ATG infusion can have some strange side affects 🙂

If raising a normal child takes a village, raising a sick child takes an army.  You all have been there through each of our skirmishes.  From battling a ferocious and aggressive pneumonia, to the battles with insurance, to the ongoing battle to keep Idan safe and healthy despite his weak immune system, with your help and encouragement, we have fought and beat enemies small and large.  In a couple days, we will face Idan’s disease head on.  Tomorrow, Idan will undergo a minor surgery to place his central intravenous line.  We will check into the hospital on Wednesday at 8 a.m. PST, to begin chemotherapy.

Let this be the end of our war.  Let this be the beginning of a new era – an “Idan Chadash – עידן חדש” – of health and longevity for our little Idan.  Let Idan finally be able to enjoy his childhood and go to the playground, play in the dirt, and visit his cousins without fear.  Idan is strong, and we have a powerful, massive, and loving army behind us.  Idan’s Hyper IgM must be feeling pretty scared right about now, because we have our war paint on and our weapons drawn – and we’re about to kick some serious Hyper IgM ass.

Couldn’t help but share this ridiculously cute video of Idani playing earlier today =)

Last week was a difficult week, as you might be able to tell from the last couple blog posts, but this weekend brought plenty of sunshine, warm weather, and great company.  Energy restored, we are ready to face next week again.

Before we get into the testing, Akiva and I wanted to share the good news that we will be moving into an apartment about a mile from the hospital.  Idan will have his OWN room.  Since he won’t really get to enjoy it until after he is discharged (sometime in December or so), we have plenty of time to make it into an Idani-Wonderland.  He’ll be in total isolation after discharge, unable to leave the house except to go to doctor appointments, so we are working hard to make a playroom for him that will allow him to climb, explore, and discover new things every day.  Any ideas are very appreciated!

Pre-Transplant Testing Update

Since we last wrote, we had two more days of testing.  On Thursday, we had another consult with the transplant doctor and her team, and they took a nasal swab from Idan to test him for viruses.  He loves the team (as do we), so he was very happy through this consult.  He even allowed them (for the most part) to squirt water up his nose and poke around for a second to get a good swab.  We then went down to the blood clinic, and once again could not seem to get blood drawn.  Three more pokes in his arms, zero success.

After a couple hours break, we went to see the physical therapist to get a baseline of his motor skills and development.  For the very first time, Idan got to crawl around and play with toys in a hospital setting – and he loved every second!  He made a new friend with the physical therapist, and found an old favorite one – a large blue ball, just like the one he has back home.  Idan’s eyes and mouth opened wide as he picked up the ball and gave it his signature toss – and then another and another and another.  Nothing better than watching him play.

On Friday, we had to go to the hospital to complete (well, re-do) the blood draw for the third time.  Akiva and I held our breath as the needle went in, hoping and praying that this time it would work – and FINALLY, the blood started running.  Never thought in my wildest dreams that I’d pray for Idan to bleed, but when the tube started filling up, I could finally breathe a sigh of relief that it was his last poke for the week and his little limbs could have some rest.

One more week of testing to go, and then we’ll be admitted for the actual transplant on October 15th.  All our love and thanks to you all who have kept us going and given us strength to face what’s to come.

– Amanda, Akiva & Idan