Month: July 2016

Day 12 – Idan’s Lemonade Stand:

13876315_1341684372528193_3876466028374388296_nToday was definitely a better day than yesterday. While he woke up a bit cranky, Idan was in a very happy and playful mood most of the morning. His bladder/urine issues seem to be a lot better with no pain today and a lot of frequent potty breaks. They are still giving him extra fluids at his max throughout the day to help flush out any potential virus or infection while we wait for the results of the urine tests.
For the past two days Idan has been obsessed with building his own Lemonade Stand. We are not sure where the idea came from but he has been working on it for a couple of days and finally set it up. He spent the morning playing with the stand and offering the nurses lemonade at exceptionally high rates of $100 a cup.
He then decided it was time to take an Uber to the bakery and grabbed Amanda and went out into the hallway to catch his Uber. He was a little disappointed when he could not find the bakery but ended up walking around the unit 10 times and earning a “Foot” sticker for his door. Overall, a great day.

Day 11 – Still has discomfort:

Today’s complications have all surrounded around Idan’s pain when he tries to take care of his “business.” He is in a lot of pain still and went the whole first part of the day refusing to go because of the pain involved. The doctors felt there is a chance a virus might be causing his pain and fluid retention. He was able to go more comfortably when they gave him an extra dose of pain meds. They sent out his urine to be tested for viruses and it will take a few days to get back. If it is a virus, there is little we can do besides give him more fluids (he is already getting 60 ounces daily) and hope it helps to flush it out of his system until his white blood cells come in to take care of the virus. 

That said, today was the first day we saw a small amount of ANC and lymphocytes. As you might recall from our posts from his last transplant, when the donor cells start setting up the cells factory inside the bone marrow, they start producing the white & red blood cells and the platelets. The first cell line we watch for is the ANC, or absolute neutrophil count. After 9 days of “zero data,” today he showed an ANC of 26. This is very very low, but is the first sign of some activity in his marrow. He then received another dose of methotrexate (a chemo drug he gets to reduce risk of GVHD), which will likely knock this ANC back down to zero for a few more days. Once the ANC really comes in and starts to go up, we will watch it closely. They like the ANC to go up above 500 for at least three days before we can be discharged (probably a couple weeks away still). At that point, we would be able to discontinue the around-the-clock antibiotics IV he has been getting since his ANC dropped around Day -1. 
Lastly, Idan continues to shed his hair, and at this point it looks like he has shed almost all his old hair and has a thin layer of blond peach fuzz that is pretty cute. 
We are hoping for better days ahead. Days will less pain, discomfort and grumpiness. We hope he stays virus-free and infection-free while his new immune system comes online. We are very pleased that he has continued to eat and drink, and the BMT team is also quite amazed with his appetite and eating skills. We are hoping that this continues as well.

Days 9 & 10: Idan’s energy makes a welcome return!

Yesterday started out as a rough day, with Idan continuing to have episodes of pain and general discomfort, but a great idea from our friend Ashley got Idan out of his room and bouncing happily down the hallway (see last post for a cute video of Idan playing a real life version of his favorite iPad game, Osmo, that he got as a birthday present from his grandparents). We passed by Idan’s doctor in the hallway who was very happy and surprised at Idan’s energy. Note: Always good when the doctor is smiling. 

He continues to shed hair everywhere. Most of the long darker hair is gone and he is now left with a blond peach fuzz, which is very cute. 
Today, Idan has been full of happy energy and it feels so good. He received a special surprise today in the form of a Hyper IgM Foundation tote bag filled with goodies. For the last two years, he has excitedly helped us pack care packages for boys around the world undergoing transplant for his disease, and today he got his very own. For a child who has lived the challenges of dealing with an extremely rare disease, it was a nice reminder for him that there are other little boys who are just like him. He is not alone. 
Idan is in a great place for the moment, and now we wait to see what happens when his cells start to come in over the next few weeks and months (his blood tests currently show “no data” in the white blood cells). To quote Idan’s favorite author (Mo Willems), “waiting is not easy,” but with any luck, it is worth the wait.

Day 8: Hairs on the pillow.


Idan spent most of the day yesterday in bed either sleeping or watching Peppa Pig. His pain finally under control, he has begun to feel the sheer exhaustion that comes with a stem cell transplant. So are we. The three of us are all starting to feel the weight of all that we have been through, and living in a hospital room for over two weeks (with at least another two weeks to go) will wear just about anyone down. So we all took a break. 

In the morning Idan received a visit from the music therapist and had a great time banging on the drums, and in the late afternoon, after a day of rest, he had a small burst of energy and danced around catching bubbles. He was happy she finally learned his favorite song (Seven Years by Lukas Graham). Thankful for the even the brief moments where he can just be a kid!

When we peeked over at Idan during his tv break, his little eyes were red from rubbing them. Sure enough, there were little hairs scattered on his pillow, softly falling all over his face. Two weeks of pain and sickness notwithstanding, these hairs are a very real reminder of what Idan has been through, what he has lost, and the hope of tomorrow. Just like his hair, his beautiful soft golden brown curly hair that is falling out as we speak, his emptied bone marrow will grow back. With luck, it will grow into a thriving and healthy immune system.

Day 7: Pain *almost* under control – A good day. 


Today, the pain seemed to be largely under control except in the evening. After a very long nap in the morning, Idan woke up happy and refreshed. Color returned to his cheeks and he was playing happily and calmly for most of the day. This is a huge relief as it means either the new pain meds are working or Idan’s pain is starting to subside. More likely the former, given everything he has been through and continues to go through on a daily basis. The pain came back in the evening, but he is resting peacefully now. Regardless, it was a great day because for once Idan could simply enjoy playing and we could enjoy his sweet laugh, jokes and silly side again. Most importantly, the attending was very happy with Idan’s progress, and was especially amazed at Idan’s appetite – not too many people can take a week of chemo and dozens of other meds that cause all sorts of side effects and still happily gobble down breakfast, lunch and dinner. 

Later in the day, the fellow stopped by to check in on Idan, who had just finished building a Lego set of a hospital and ambulance. The fellow started to tease Idan and asked Idan if he could have the toy ambulance since he didn’t have any toys. Idan played along for a bit, and pointed to the pretend driveway where the ambulance belongs. As the fellow put the toy ambulance back, he stopped to see if there was a patient inside. To his surprise, there was – and it was a doctor!! Idan and the fellow laughed as the fellow backed slowly away, saying “Ok, ok, I’m leaving, I got the message… Don’t want to wind up in an ambulance!”  

As we said last transplant, we expect many more bad days than good during this process, so when we have a good day, we rejoice and enjoy it!

Day 6: Another long day, but much improvement.

13681051_1337264952970135_1265469612125622542_nWell, it started out as another rough day, with Idan continuing to suffer with pain, itchiness, and fatigue when all he wanted to do was play. This morning we had a good conversation with the team who noticed right away (without us having to say anything) that, even if the pain was reduced from yesterday, the cocktail definitely needed more adjustment. We changed the dilaudid from one dose every 4 hours to a constant drip, and added a new drug that is supposed to counteract the itchiness that comes with opioids.

By evening, Idan’s mood had lifted substantially and we heard him laugh for the first time in several days. It’s the most beautiful sound. The extreme itchiness seems to have subsided and his skin rash from earlier in the week has also significantly improved.

Idan had his second school session today with another teacher from the community who teaches at the same school as the teacher who came last week. They have coordinated with each other and have already started planning a curriculum for tutoring sessions that are tailored to his interests and skills 🙂. Our heart is full, and we are so grateful to these lovely women who have added some structure, fun and normalcy to his daily routine.

Yes, another long day, but all in all, a good one.

Day 5: Pain (somewhat) under control, but new meds bring new side effects.

13669770_1336467653049865_8170639665652922012_nWe have started Idan on a regular dose of dilaudid to keep him more comfortable. It is always hard to know if a young child is in pain, and this is especially true with Idan, who played and smiled even when he was on a ventilator three years ago. This remains true today. He plays and insists on playing even though his blood pressure is elevated and he is grunting with every breath. He screams when using or about to use the bathroom, and writhes in bed with itchiness from his rash, but if you ask him if it hurts anywhere, he will insist he is fine. He is easily frustrated, very restless, and quite moody. But ten minutes after the dilaudid kicks in, he is breathing easy and having fun. So after a consultation with his team, we’ve decided to give him pain meds regularly instead of as needed. Unfortunately, the increase in pain meds comes with the added side effects of making him more agitated, itchy and tired. Worth the pain relief, but makes for an exhausting day for all of us. In the meantime, his team is working on finding just the right cocktail that keeps him comfortable in all respects.

Speaking of cocktails, during rounds today Idan bravely decided to tell the attending (who happens to also be the head of the bone marrow transplant division) that he does not like the taste of several of his oral medications. He went on to pronounce perfectly the ones he does not like: fluconozole, ursodial, and acyclovir. To his delight (and ours), the attending said we can switch his fluconozole to IV for now, thereby eliminating one of his most dreaded oral meds. Very proud of our 4 yr old for speaking up and for getting his team to change his medical plan.

When all is said and done, we are counting our blessings. The doctors are very happy with his progress and are doing everything they can to help us manage the side effects. Our very good friend Ashley is visiting from New York and has managed to keep him entertained all day. So grateful to all of our family, friends and all of you who have been supporting us along the way.

Day 4: Another rough day brings new challenges, but all is going as expected. 


Day 4: Another rough day brings new challenges, but all is going as expected. 
Idan’s rash continues to drive him crazy (even literally at times), as it would any other person, but thankfully it looks less red and angry. He continues to have some GI issues, but less intense than yesterday. Now that the fever, rash and GI issues are starting to resolve themselves, new challenges are rolling in. Idan is starting to get some mucositis it seems, which is essentially sores and blisters that can develop in the mouth, nose, throat and GI tract, and can be very painful. So pain seems to be the biggest problem of the day. Terrible pain from different places. Managing pain for a 4 year old is very difficult. There are 3 options right now: (1) convince Idan to take another oral med every 4 hours around the clock, which is more benign than the other options, but, let’s face it, unrealistic, (2) give him morphine, which is the most effective at reducing pain but gives Idan paranoia and can make his itchiness worse, or (3) dilaudid, which causes less side effects but is slightly less effective than morphine. We went with (3), and we will see how it goes. 

Idan has tried hard to remain stoic during the pain. It was only because he started breathing funny that we fully understood how badly he feels and how hard he is trying to keep on a brave face. We took him down for an X-ray (which was clear), but as soon as the dilaudid entered his system, he immediately started to perk up and breathe easier. It brings us a great deal of pain just to see our sweet child in so much pain. So, yes, pain is the challenge of the day. But now we know, and we can and will help him through it. 

All that said, we are counting our blessings that Idan is doing well on so many other fronts. His counts have completely dropped to zero, meaning his bone marrow is completely empty and ready for the new donor cells to set up shop. The doctors have no concerns about the side effects – this is all par for course. Importantly, Idan is still eating and drinking very well and taking his oral meds (with M&M bribes – whatever works, right?). We spend most of our time playing and occupying him with activities that keep his little hands busy to reduce the scratching. He said yesterday that he wants to be a doctor when he grows up because “doctors make people better.” His positive outlook and tenacity are helping us all stay strong. 

Thank you for your continued support and strength!

Days 2 & 3: An eventful 24 hours, and another random act of kindness. 

Idan has been starting to feel the side effects of the chemo and other various medications he’s been on and has been in a fair amount of pain. Fevers, itching & burning rash, and (sadly) back to pull ups – all quite a lot to handle. Idan’s aunt Tamara has been visiting and that has been an incredibly welcome and helpful distraction. He also had his first “school” session for the first time back in New York, with a wonderful teacher named Katie who volunteered to tutor Idan once a week (have we mentioned how much we love the people here?). He missed learning so much, so this session brought him a lot of joy. 

Later in the afternoon he started to experience more intense pain and GI issues, and then his rash began to flare up again. We had a good long cry together after an especially intense two hours, and then, once the pain meds started to kick in, he was singing silly songs again and happily playing. 

At the end of the day yesterday, as we were getting Idan ready for bed, he turned to his IV pole (named Ga) and gave it a loving pat and a smile. Then he turned to us and, still smiling, said, “Ga is giving me lots of presents to help the new cell family.” It’s the very last thing we expected him to say about this giant awkward machine that he is constantly tethered to, tripping over, and stubbing his little toes under (not to mention the fact that it’s giving him meds that make him feel sick all the time), but once again he surprises us. Idan’s courage and ability to focus on the goal is just… well, there are no words for that. 

Finally, we wanted to share a sweet story. Akiva popped out to the supermarket yesterday and a woman rushed up to him as he was at the cash register and insisted on paying for his groceries. She was a young mom and she came over when she saw the Seattle Children’s Hospital parent badge around his neck. She told Akiva that she spent a fair amount of time at Seattle Children’s Hospital a few years ago and now every time she sees someone with that badge, she pays for their groceries. A nice reminder that, even when it seems that the world outside is filled with hate and terror, there are truly good people (and you can probably find them in your local supermarket).

Musings

Just barely 4 years old and yet this conversation happened today, just after his fever spiked again:  
Me (Amanda): “Idani, which friends were you talking about yesterday when you said ‘it’s ok to be sick because you get to meet new friends?’ Were these friends the nurses? The CNA?”

Idan: “No. I was talking about the friends I will meet when I go to an outside school that’s a real school.”

In one sentence he manages to break my heart into a million pieces and put it all back together again. He is all too aware of the purpose and goal of the transplant (perhaps more than we know), and he is therefore willing to endure the pain and significant discomfort because he sees a better future for himself. So do we.

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