Idan, my hero

We have made a few updates on Facebook the last couple of days but thought it would be good to summarize everything here as well. Our two Day Zeros went by mostly uneventful. Idan is still in a good mood and happy, and he keeps up busy every waking hour. Nights are a bit harder, as he tends to get tangled in all the tubes going into his central line as he does his nightly traveling around the crib while asleep. Tuesday night, both Amanda and I stayed the night to be here for the transplant. As Amanda mentioned in her letter to the donor, the stem cells from the marrow came in around midnight and the nurses hooked them up to his IV. Over the next 5 hours they were slowly transfused into Idan’s small body and over the next week or so they will travel on their own to go live in his, now, vacant, bone marrow. The next few weeks are the hardest ones of transplant. From an immune system perspective he is at total zero. So a lot worse them where he was just with Hyper IGM. He is at his highest risk of infection, and they monitor him closely as well as treat him prophylactically with antibiotics, antivirals and antifugals meds. Also, since he has no white blood cells, there will most likely be breakdown of the cells in his mouth, GI tract, and gut (called Mucusities) and he might stop eating (to much of everyone’s surprise, he is still eating great now). Also, his skin will start to form some blisters, and it might get very red. This is all to be expected as we wait for his new donor cells to engraft and start making the white blood cells again. On the second day 0, Idan woke up with a red glow all over his skin. We were worried it was the start of the skin rash, but were then told that was a result of all the red blood cells that were mixed in with his bone marrow donation. His red blood cells had doubled over night and the red skin was a side affect. Another side effect was a whole lot of energy yesterday which was fun, but very tiring for the two of us 🙂 Today is day 1, and we are in the positive numbers. So far, the day looks positive as well.  We will play the waiting game for the next few weeks. We hung up his Idan-Do Mohwak Poster today, and yesterday, in case you missed it, he got a very cute poster from all the amazing nurses. Thanks for all your notes and words of encouragement both on the blog and on the Help Fight for Idan Facebook page.  We are so grateful to you all for your support!

Big gifts come in tiny packages.

We’ve never met you and know very little about you, nor are we allowed to for the next year.  What we do know is that you are a healthy 23 year-old man from somewhere in the United States.  You have been through half a dozen tests over the course of the past several months all to confirm you are indeed the best match for Idan.  Indeed, you are a 10/10 match and even have Idan’s blood type.  Your world has just collided with ours, and we must thank you for sending Idan the gift of life.

Around midnight last night, your stem cells arrived in two tiny packages, both labeled with Idan’s name.  When the nurses came into the room and showed us your cells to verify that the name on the packages was Idan’s, I felt a feeling that mothers rarely get to feel twice.  Seeing those tiny packages felt exactly like the feeling that rushed over me the moment Idan was first brought into my arms on the day he was born.  He was a newborn then, and in many ways he is a newborn now.  The gift of seeing your child’s future and all the hope it promised is the most wonderful gift you can receive.

Although the road ahead is long and will most undoubtedly be bumpy, the fact remains that you showed the most selfless kindness possible from a complete stranger.  Whoever you are, wherever you are, thank you.  Thank you for giving our child a second chance  at health and longevity.  Thank you for saving his life.

It is about 9:30 p.m. on Tuesday, October 22nd.  In about 2 hours, Idan’s donor cells will arrive.  The donor cells come in a small package, about a pint of blood, and gets hung from his IV stand along with the four other bags and syringes delivering fluids into Idan’s veins.  At first sight, it is all rather anti-climactic.  The cells will be infused like anything else that has been infused into Idan in the past several days.  But this infusion is unlike the chemo, the blood and platelet transfusions, IVIG, fluids, the anti-nausea meds, antibiotics, and other “anti” drugs.  This is not just any drug.  This is an infusion of seeds finding their way into Idan’s bone marrow, where they will settle, grow, and blossom.  This is the beginning of an “idan chadash” – meaning a new era – for a new Idan.

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!

Anyone who knows me knows that I am a highly rational person.  Learning how things work, understanding processes, problem solving; these are my coping mechanisms.  But there’s a small part of me (inside all of us perhaps) that still believes – or is afraid not to believe – in jinxes, bad luck, superstition, and all that jazz.  The part of me that waits for the other shoe to drop.  I’ll give you an example.  One day, on my way home from work about seven months ago, I stepped off the subway and saw the sunset straight ahead.  In that moment (and I remember it clearly), I felt like I was the luckiest woman in the world.  I was enjoying my work and planning a huge event for the women’s group about issues immensely important to me and my female colleagues.  Better yet, I got to return home every night to my beautiful baby boy and darling husband who I love with all my heart.  But in the midst of that thought, before I even had time to enjoy it, I gulped and feared when the other shoe would drop.  And in April, only a couple weeks later, my beautiful baby boy was rushed to the hospital, and so began our journey.  I have thought back to that moment, where I thought I had it all, many many times since then.  Did I jinx myself by being happy and believing us to have it all?

Last night, my father said something to me that changed my entire perspective.  Idan has been feeling very well compared to your average chemo patient.  He has been energetic and happy, drawing with crayons for the first time, decorating his crib with stickers (really, I kid you not), and giggling like a maniac when we act silly with him.  And last night, I felt that fear again – when is the other shoe going to drop?  But, as though reading my mind, my father said to me, “I am so glad Idan has been through four days of chemo, and is still feeling great.  Every day he feels good is one day less that he has to suffer from all this.”  And suddenly it all clicked.  Every day he feels well is a blessing, no matter what tomorrow brings.  

And of course, last night Idan did have a terrible night, inconsolably crying, and barely getting any sleep.  He received his first dose of morphine to help with pain.  But I for one am feeling thankful that it took this long, and glad that no matter what tomorrow brings, Idan had at least four less days of feeling bad.