Month: October 2013

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.

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

Day -4 was a hard one on me, but pretty smooth sailing for Idan. After spending most of the night up with him in my arms I was exhausted by the time Amanda came back to the room at 8AM. Idan took a few naps throughout the day and played the rest of it. I was lucky to be able to pop home for a quick nap in the afternoon as well while Idan got his last dose of Treosulfan chemo and the ongoing dose of Fludarabine chemo. He tolerated them well. By the time I came back they had moved us to a room with a nicer view (they said it was a better suited airflow room for Idan, but I think it had to do with Amanda’s jokingly asking the nurse that morning for a room with a view 🙂 ).

In the afternoon, Idan started his rabbit ATG, which is a powerful immunosuppressant. This is the drug the doctors told us would have the worst effect on him, making him sick and giving him flu-like symptoms.  It is a slow infusion over 6 hours, and they gave him Tylenol and Benadryl first. So far he has tolerated it well.  He has a few more hours and he is asleep now. Hoping it continues that way. So far Idan has also maintained his appetite and has been eating his normal food (and lots of Bamba). That is expected to change in the next few days as his counts continue to drop and his immune system completely disappears. Only thing I am really worried about tonight is later on they need to change the dressing on his central line and we hope it does not start to bleed again.  I get to sleep back at the apartment tonight while Amanda stays here, hoping it is a better night than last. I hope to write a good summary of the whole transplant plan right after this post.  Thanks for all your support and best wishes!

It’s been almost two days since we drove to the hospital to check in for Idan’s transplant.  As Akiva and I walked side by side down the hallway, wheeling Idan in his stroller down the hallway leading to the bone marrow transplant unit, I had a flashback from my childhood.  My twin Rachael and I were laughing and running up a hill at a national park called Craters of the Moon.  We gleefully climbed the mountain of volcanic soil, holding hands.  We must have been only 7 or 8 at the time.  When we got to the top of the hill, we were in awe of the beautiful view.  But as we turned to go back down the hill, we saw how steep it really was.  We nervously squeezed each other’s hand, and looked into each other’s eyes.  As if on cue, we both said, “I trust you with my life,” and headed slowly down the steep hill, one small foot in front of the other.  Walking with Akiva and Idan yesterday felt eerily similar.  We have gleefully and excitedly arrived at our destination, excited for what’s to come – Idan’s new immune system and all that it entails.  But the path forward is steep and downhill, and we have to hold on to each other tightly, tread slowly, and keep putting one foot in front of the other.

I won’t sugarcoat it; the last couple days have been very difficult.  As we mentioned in an earlier post, the placing of the central line was much later than anticipated.  It also was quite traumatic, as we found out that Idan kept bleeding from his central line for a while after it was placed.  They had to change the dressing multiple times, all before we were allowed to enter the room.  By the time I came to his bedside, the little guy was bent over, still choking back sobs.  He was still drowsy from the anesthesia, but he was scared and angry.  The next morning, we were admitted into the hospital and Idan was finally feeling more like himself.  Unfortunately, in the late afternoon, Idan began bleeding again from the central line site, and, although largely harmless, it was very difficult to control.  Several measures were taken to try to control the bleeding, but nothing was working.  In the meantime, Idan was poked and prodded many more times than planned in this effort to stop the bleeding, and he was extremely upset by it.  There is nothing harder than looking into your little boy’s eyes as he screams in pain and fear, returns a confused and hurt stare, and begs you to save him.  But Idan is strong and, thankfully, very forgiving, and even smiled at the very nurses who moments earlier were forcefully applying pressure to his wound.

After a mostly restless night, Idan returned to his usual self this morning.  Full of life, energy, and jokes, Idan laughed and played his way through the day, and we could not be more proud of him.  He manages to find joy in the smallest activities, from playing peek-a-boo from behind the bars of his crib, to practicing the new words he learned to say, like door, ball, car, and – of course – bamba (his favorite snack).

Tomorrow, we start the ATG, which is another form of immunosuppressant, but likely to cause the most severe side effects.  We have been told to expect that things will get a lot worse for our little one as the days go by.  ATG causes significant flu-like symptoms, among other things, which we will look out for tomorrow and through the next couple weeks.  The effects of the chemo may hit around the same time, so we’re glad Idan is such a strong, resilient little guy!

We are relieved another day of chemo is over, and will send an update again soon.  Thank you for all your support, prayers, and words of encouragement!