It is an odd thing to fall in love with a city, but we did. From the people, who have opened up their hearts and homes without knowing anything more than our name and our story, to constantly finding new places to discover and experience, to the lush green scenery that is now part of our everyday life, we love this city, and Idan does too. My favorite part has to be the fact that, even though every morning we have woken up to cloudy skies, by the afternoon, the sun is shining brightly in an endless blue sky. It’s as though the sun is so damn persistent that it will burn its way through all the clouds just to shine down on this remarkable city.
I won’t sugar coat it, though. It’s not easy to walk the same corridors in Seattle Children’s Hospital as we did once before, to pass by that restroom in the clinic where I had a good long cry after finding out that Idan’s first transplant was failing, or to endure procedures where Idan needs to be anesthetized and goes limp in our arms. It’s not easy. But we are comforted by all the familiar faces and the very warm greetings from all the doctors, nurses, physician assistants, pharmacists and all the staff who we got to know so well during Idan’s first transplant.
As expected, Idan has no memory of Seattle as far as we can tell. In a way, it is a reassuring reminder of how young he is and how much of a distant memory this hopefully will all be some day. On the other hand, it makes it feel like we’re taking an entirely different child through transplant. Idan was only 14 months old when he had his first transplant. Now, he’s almost 4. He doesn’t recognize the nurse who gave him hugs when he finished a brutal dressing change, or the doctors who we have grown to be friends with and who visited him frequently while he was outpatient. But he also doesn’t remember the four phlebotomists who took turns soothing him and entertaining him while one of them had to poke multiple times to find a good vein in his chubby arms, or the fact that the blood pressure machine never got a good reading so he had to endure multiple “arm squeezes.” No, he doesn’t remember anything, but perhaps that is the greatest gift of all. Idan has heard so much from us about Seattle, the transplant, the hospital and the clinic. He has watched all the videos from the first transplant, and basically has been preparing for this transplant for the past two years.
Unlike last time, where it seemed that he felt that each probe and poke felt like an assault to his little person, Idan is actually enjoying experiencing each new test or procedure – be it an EKG, echocardiogram, bone marrow aspiration, or even a dental exam (yup). For Idan, the past two weeks have all been one great adventure.
So instead of screaming during blood draws, he sits patiently, counts the vials, and watches the needle going in without flinching. Oh, he knows it hurts, and he even announces it will hurt before the needle goes in, but he relaxes his arm and chats happily with the nurse while the vials are being filled. And he opened his mouth wide for the dentist, taking a bet with her beforehand that she would count 24 teeth.
On Friday, he had his first “surgery” to have a bone marrow aspiration. He’s heard a lot about surgeries (including his 2013 surgery to place his central line, and the one he will be having on July 11th to do the same thing), and was so excited to have the surgery that he barely flinched when the IV went in right before the procedure started. In fact, he was disappointed to wake up and discover that they did the surgery without him watching. He literally woke up in mid-sentence asking me how they were planning to do the surgery in the back if the IV was in his arm and he couldn’t lie on his side. When he realized that it was over, he kept repeating sadly, “but I saw when they did my IV surgery, how come I didn’t get to see when they did my back surgery?”
Yes. This is our incredible, amazingly brave, adorable and joyful little boy. He wants to experience every ounce of everything, and will muster through the pain and discomfort because he is simply too curious to see how it all plays out.
The past week and a half, we have had a slew of various appointments, and we will have several more tests until July 11th when Idan’s central line is placed. We will be admitted into the hospital on July 12th to begin a 5 day course of chemotherapy, to be followed by a day of rest, and the transplant will occur on July 18th. We expect to be in the hospital for at least 35 days, but it all depends on how things go.
In the meantime, we have been having adventures around Seattle. We went to Bainsbridge Island and Idan took his very first ferry ride. We visited the Seattle Children’s Research Institute – the very same lab that diagnosed Idan with Hyper IgM before we knew anything about Seattle Children’s Hospital, that processes all his lab results, and that recently published research showing promising results with gene editing as a cure for Hyper IgM. Idan received a private tour of the science lab and got to see where and how all of his blood gets tested, the different machines they use, and he even peeked into the very cool container storing his blood samples for future research.
So, if you see a smile on our faces in these pictures, it’s real. We are joyful. Idan is once again leading the way, and we can’t help but be just a little excited when we’re all together on this great and scary adventure. We expect some serious storm clouds along the way, but just like the sun in Seattle, together, we are pretty damn persistent, and are hopeful that the clouds will make way for a beautiful blue horizon.