Month: November 2013

Day 33-37: Wishing you all a very happy holiday season!

IMG_2150This is the first Thanksgiving (and Chanukah) that Akiva and I have spent away from family, but that didn’t stop us from enjoying good food and company.  Two years ago, we joined the Jaffe side for a day of playing with all our nieces and nephews, and I had a little baby bump.  Last year, all three of us joined the Zablocki side for a feast at Akiva’s brother’s house, and baby Idan wore a cute (ehem, scary) black skeleton onesie that was a big hit with all his cousins.  This year, we Skype’d with everyone on both sides from Seattle, and even lit Chanukah candles together.  Later, Akiva and I enjoyed a surprise taste of home, quite literally, when the UPS delivery man knocked on our door carrying a large box from Zabar’s, our absolute favorite market in Manhattan.  Next year, we hope Idan has a brand new immune system that is fully functioning so he can sit at the Thanksgiving table, play with his cousins, and be spoiled on Chanukah by his grandparents and many aunts and uncles.  Until then, we are very grateful for modern technology!  We hope you all have been able to enjoy good food and time with your family this weekend, and wish you a very happy holiday season.

On the medical front, it’s been thirty-seven days since Idan’s transplant, yet we still have a ways to go.  As you may have read from our last post, the first chimerism test results (testing whether the new cells coming in are the donor’s or Idan’s) were inconclusive.  We are repeating the test on Monday, with the hopes of having results back by Friday.  In the meantime, we have spent much of the last ten days in the outpatient clinic.IMG_2392

There are 2-3 scheduled visits per week to draw blood and see the attending, mid-level provider, and nutritionist, and then there are the unscheduled visits, which are more frequent than we expected.  Just to give you an idea, one day, we had to rush to the clinic to change Idan’s dressing over his central line when his IV fluids leaked over the bandage.  We spent a Saturday morning in the hospital because there was a miscommunication with the pharmacy and we did not get enough IV fluids to give Idan the night before.  And, we spent most of yesterday at the clinic because Idan was having some stomach issues (we’ll spare you the details), which seem to have resolved once we took him off oral magnesium.  We must call and/or go into the clinic for every rash, elevated temperature (100.3 or above), vomiting or diarrhea, and at any sign of infection of the central line.  In a way, we are blessed to be so busy because it helps keep us from stewing over the chimerism test on Monday!

IMG_2203Nonetheless, Idan is still doing remarkably well, and is a very happy silly little boy.  It shocks us how amazingly well he has coped through the hospital stay, and now the almost daily visits to the outpatient clinic.  He makes the most of it, and smiles, laughs, and tells jokes the whole time.  This Thanksgiving, we are thankful for Idan’s army and all it has done to support and encourage us over the past several months, we are thankful for Idan’s continued health and, most of all, we are grateful for Idan’s spirit.  He brightens every day, no matter how bleak, and keeps us all smiling and laughing through it all.

Days 28-32: Where do we start?

Day 31We last wrote as we were preparing for discharge.  Since then, we received the results of the chimerism testing (discussed more below), and we spent four glorious days outside the hospital.  Most of those days were consumed with doctor appointments and transfusions, but we had very good company (Idan’s grandparents arrived on Friday) and we were able to enjoy all of Thursday and all of Saturday.

The results of the chimerism test were not quite what we had hoped for.  Instead of coming back 100% donor, some of Idan’s cells have stubbornly grown back, including his T-cells, which are the defective ones that need to be replaced.  They tested four lines of cells:  the Myeloid cells, the B-cells, the NK cells, and the T-cells.  The Myeloid cells came back at 100% donor, but the NK and B-cells were mixed, with 77% and 62% donor cells, respectively.  The most concerning is that the T-cells back at only 16% donor cells.  The doctors have assured us that this may just be a result of the conditioning protocol, and do not think that we should jump to the conclusion that he is rejecting the graft.  Apparently, with a Treosulfan protocol, it is not uncommon to see mixed chimerism (donor and host cells) at this early stage, and then to see the donor cells come in stronger a few weeks or months later.  They are happy with his myeloid, B-cell and NK cell engraftment, and will keep a close eye on the T-cells.  It may just be too soon to see donor T-cells, and we need to just sit and wait.  They are re-testing the chimerism again soon, and we should know more in a couple weeks.  If the donor T-cells go up, then it means that they are just taking a little longer to engraft.  If the donor cells go down, it means that he may be rejecting the graft.  We hope that the engraftment of the other cells will help kickstart the donor T-cells.

At first, when we heard these results, our hearts sank to the floor.  But after reading several articles and consulting a few experts on the immune system, we are more optimistic that this is just part of the process.  We have always known that the donor immune system would take at least a year to grow and stabilize, and that there would be many ups and downs along the way.  Hopefully, this is just a bump in the road!

Until we know for sure, we are focusing on the positive.  Idan is out of the hospital, has had an incredibly good time with his grandparents, and is still smiling and feeling good.  As I write, he is pushing a walker around the apartment, untethered from Johnny Five.  On Tuesday, we came home from the hospital to three large boxes filled with toys, necessities, gift cards, and warm notes and cards from many of my friends and colleagues from work.  A friend from home knit me a scarf, and another friend sent Idan a portable menorah and Chanukah presents.  Family and friends from near and far have called, Skyped, emailed, and traveled across the country, all to make sure we are okay.  The amount of kindness and support we have received is beyond anything we can fully comprehend.  It brings tears to our eyes and gives us hope that Idan is going to be okay.  We love you all and hope to be sharing better news next time.

Day 27: Engraftment and Discharge!

Day 24

Today, we have much to celebrate.  Idan has officially engrafted.  His ANC has been above 500 for four days now, and it has jumped to 1,030 this morning!  Since Idan is eating well and is on no pain meds, after over a month in the hospital, we can be discharged — today!

The last few days have been incredible.  The first step towards discharge was the ANC staying stable over 500.  Once that happened, we were able to switch Idan’s last remaining continuous IV med to oral, so he only has to be hooked up at night.  Finally, Idan is no longer tethered to Johnny Five!  He has much more freedom of movement (limited as it is in the hospital).  In addition, since his meds are all in the morning, late afternoon, and evening, we have several hours that Idan isn’t being bothered for anything.  We have our first taste of freedom.  They even gave us a “therapeutic pass” to leave the hospital for a few hours on

We still have a long road ahead of us.  In order for the transplant to be a cure, Idan needs to accept the donor cells.  We tested the percentage of his cells that are the donor’s this morning.  Those results should be back next week.  Even if it is 100% donor, there is a chance that Idan’s own immune system can come back.  So we wait and see.  Until then, we have another 75 days or so when Idan is at the highest risk for infections, viruses, etc., and when GvHD usually presents itself.  So even though we can leave the hospital, we must keep him very isolated for now.  His immune system will start to kick in around Day 180, and it will be an entire year before it is fully functioning.Sunday and Monday.  We visited IdaniWonderland (a.k.a. Idan’s playroom in our apartment a mile from the hospital), and Idan took a nap in his own bed.  These short excursions back to the house have been a much needed mental break for Akiva and I, and have given Idan a chance to slowly adjust to our new apartment here in Seattle.  Despite being in a hospital, this room has been home for him for over a month.

Nonetheless, we have a lot to be thankful for today.  Above all, Idan is leaving the hospital in much the same spirits he entered.  He still wakes up with a smile and shows us all of his funny faces.  He still manages to throw a ball across the room with the force of a much older child.  He still dances and still sings.  We owe a lot of that to all of you.  Idan went into this battle with an army behind him, and it has made all the difference.

Day 20: Update

Playing with stickers he received from a fan.

Playing with stickers he received from a fan.

It’s been several days since our last update, and we wanted to let you know all is going very well!  Since we last wrote, Idan’s counts have went from 50 to 262!  We are more than halfway to 500, the magic number we need to exceed for two days before Idan can be discharged.  His rash is significantly better, and we hope it will disappear altogether.

The last few days have been a bit of a blur – in a good way.  Idan’s aunts Sabrina and Elisabeth came to visit, and we all had such a fun time.  They gave us much needed breaks throughout the weekend, including to run back home to get the apartment ready for Idan.  The IdaniWonderland is now filled with fun toys and the walls are all decorated.  We can’t wait to see his face when he gets to play untethered to Johnny Five (his IV stand) for the first time in over a month!  This room is a product of Team Idan.  So many of you have sent toys and wall decals to help make his stay in Seattle fun, and we’ve brought many of them to the hospital to entertain him while he’s hospitalized.  Thank you for bringing so many smiles to his beautiful face.

As we start to approach discharge, we’ve had some time to reflect on our stay here at Seattle Children’s Hospital.  It’s truly a place of healing.  The staff here are cheerful and extremely accommodating to crazy NYC parents, and the rooms are spacious, allowing for all sorts of play and activities.  Despite Seattle’s reputation for being a cloudy/rainy city, we’ve been fortunate to see many sunny days (and a few sun showers), and on those days we can see Lake Washington from our window.  Perhaps one of the most unexpected sources of healing has been the widescreen TV that is hooked up to the internet.  A “toy” that we initially thought would be more fun for us has actually become a wonderful way for Idan to keep in touch with his extended family.  Aunts, uncles, cousins and grandparents alike have sent Idan videos which we play off a private Youtube playlist on the big screen.  He excitedly dances along to grandparent’s nursery rhymes and his uncles’ lullaby’s, and sweetly listens to his aunts read his favorite books to him.  He especially squeals when he sees his cousins on the big screen.  When we chose Seattle Children’s Hospital, our main reason was the chemotherapy protocol, but looking back on this overwhelmingly positive experience, we’d choose Seattle again even if they were using the same chemo as every other hospital.

 

Dear Akiva,

akiva12

It’s been eight years since Akiva’s “Day 1.”  For those of you who are unfamiliar with my husband’s own story, he underwent very risky brain surgery to remove a tumor from his brainstem on November 8, 2005.  Akiva, this post is for you.

When we first locked eyes across that small table in Lerner (Columbia’s student center), my heart skipped a beat and I had to catch my breath.  Never in my life had I felt that feeling before.  I felt as though my life had just changed course.  Yet, despite intuitively knowing that in that moment I became the luckiest woman on earth, I had no idea just how lucky.

Idan’s disease is inherited from the mother.  It is what they call “X-linked.”  This means that – no matter who the father – there is a 50% chance that my children would be affected by the disease.  Every boy I have has a 50% chance of having the disease as Idan does, and every girl I have has a 50% chance of being a carrier, and thus would carry the burden of knowing that she could pass this along to her children as well.  So when Idan was born with Hyper IgM, it was nothing short of a miracle that he is also Akiva’s son.  Who better to fight Hyper IgM than the son of a superhero?

It’s not just that Akiva learned how to navigate the healthcare system because of his own brush with death eight years ago – which, don’t get me wrong, was instrumental in helping us find Seattle and getting Idani cured – it is his personality.  Akiva is optimistic, certain, determined, and resilient.  He is incredibly funny, silly, and loves to make others laugh.  He will drop everything to lend someone a helping hand.  So how does this play out?  Well, he got me and Idan through the worst days of our lives.  He can entertain a toddler for all his waking hours without breaking a sweat.  In the middle of the night, he wakes up if he so much as hears Idan turn over, and will rush to Idan’s bedside at the slightest hint of discomfort.  Akiva dropped everything to take care of Idan full time when we first received the diagnosis so he could ensure Idan stayed healthy and happily unaware of all the things we had to do (or not do) to keep him safe. Akiva called doctors, fought with insurance, and gave me the strength to continue forging forward despite the many obstacles in our path.  When we thought we’d have to come up with a million dollars to get Idan to Seattle, Akiva smiled and said, “no worries.”  When we needed a jet to get to Seattle, Akiva shamelessly posted the question on Facebook to make sure Idan did not have to fly commercially to his bone marrow transplant.  And in the middle of the night, when Akiva is sleeping at the apartment and I am at the hospital, I get an email asking how things are going.

Akiva, thank you for giving Idan his smile, his resilience, his determination, and most of all, his silly sense of humor.  I could not have asked for a better father for my son.  Happy re-birthday.

Day 15 – No More Rotavirus, But Rash is Very Itchy!

IMG_0893We are at the end of Day 15 and Idan got some good news today. He tested negative for the Rotavirus!!! So they lifted his isolation restrictions and he is once again allowed to walk the halls of the transplant unit and blow kisses to all the nurses. This made us all very happy. Not clear how he got rid of the virus – either it was a mistake to begin with (false positive) or his donor’s immune system cleared it (although it would be a bit early for that to happen, we know for sure that Idan’s old faulty immune system could not have cleared it this fast). Either way we are happy it’s gone.

Unfortunately, the skin rash/GvHD is still bothering him. It was very itchy all last night and neither him or Amanda got much sleep. The rash on his back comes and goes so that might be a good sign that it is a mild form of GvHD and it might clear up as his ANC comes in. We started today to treat it with a topical steroid ointment and hope that clears it up.

We are excited for the weekend as Amanda’s sisters are coming out again from NY and Idan will be very happy to see them. It will also give Amanda and I a much needed break and allow us to prepare and clean the apartment for an eventual discharge, we hope soon 🙂

 

 

Day 14 – Some Skin GVHD, But Still Feeling Good

Day 14 - musical therapist

Idan during his Music Therapy

In our never-ending saga of ups and downs, Idan has GvHD.  Thankfully, it is mild for now, but we’re keeping a close eye on it.  Last night we noticed a rash on Idan’s back and side which looks like the start of some skin GVHD. It was better this morning, but now it is red and blotchy again. The doctors say that this is common with the beginning of his counts coming back and the new donor system coming on board to see a hyper-acute form of skin GVHD. They are not concerned yet, and will follow it and if it does get back they will treat it with steroids. As the donor’s bone marrow is taking up shop in Idan’s body GVHD is to be expected and we are just hoping for a mild run with it. The good news is that this likely confirms that the counts we are seeing are in fact the donor cells and not Idan’s old immune system returning.   Overall, the transplant team is still very happy with how Idan is doing. The attending we have had for last three weeks was on his last day of rounds today, and he joked that Idan is the least interesting patient medically, but that they all keep coming around just to play with him 🙂 He said that they are going to start training us now on taking care of his central line, and giving him fluids through it and learning how to flush it with the syringes. They want to get us as ready as they can to go home, as they expect his counts to keep rising and once he is at ANC 500 for a couple of days they will transfer us to the out-patient clinic. Idan is happily taking his oral meds (usually a big hurdle for patients who have undergone chemo) and they hope to transfer most of the IV meds to oral over the next few days. What to expect: If all keeps going well they might discharge us next week. If his GVHD gets worse then it would probably mean two weeks as they would want to treat and monitor. Once we are discharged we move back to the apartment we rented and are still in mostly isolation there. We would have 2-3 days a week which we need to go to the out-patient clinic or the hospital for checkups, tests, meds, or infusions of blood, IVIG or Platelets. The point is to follow him and keep him safe and infection free as his immune system comes back slowly. Once we reach the 100 day post transplant mark they will start talking to us about going back to NYC. Still a long way away. But we are happy that he is doing well and we are excited for returning home, taking Idan to the park, and letting him crawl around without Johnny Five (his IV stand) shadowing him wherever he goes!

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