Idan, my hero

We had this mantra during last transplant and we have shared this with other families going through transplant. The feeling of two steps forward one step back always holds true. After very positive news yesterday, Idan has not been feeling so good today. 
His ANC has held above 500 and they now consider him to be engrafted. We were able to stop his antibiotics IV and another IV med today and are making the right steps towards a possible discharge next week. But his gut had been acting up yesterday and today and that concerned us because it could mean any number of things. He woke up at 5am feeling sick and has had a rough day.

Later on today, after many potty breaks, the results of the stool test came back positive for C. Diff, which is always a risk when you combine a compromised immune system with a long hospital stay and broad spectrum antibiotics. This was of course not what we wanted to hear, but at least we caught it early and know what it is. They started him on antibiotic treatment (Flagyl) tonight and he will take it by mouth 4 times a day for ten days with the hope that it clears his C. Diff. 

Our hope is that it clears quickly and does not cause Idan too much discomfort and suffering.

Today we woke up to some good news that Idan’s Absolute Neutrophils Count (ANC) is up to 576. As you may recall from our previous posts, the neutrophils are part of the white blood cells. They are therefore part of the body’s first defense against infection and form an essential part of the innate immune system. The ANC coming in is the first sign of engraftment, and, once Idan has over 500 for three days, they will consider him “engrafted.” Of course we will not know if these neutrophils are the donors or Idan’s for a few more weeks, but we are working under the optimistic assumption that they donor cells. 
If all continues to go well, we may be able to be discharged earlier then the 2-3 weeks we thought we had left inpatient. Possibly even at the end of next week. Our goal today and for the next few days is to wean Idan off any meds he does not need and switch the rest of his IV meds to oral. Since he has not been in pain in a few days, we have been weaning the Dilaudid and today we stopped it all together (along with the 2nd continuous narcotic drip he had to counter act the itchy affect of the Dilaudid). We also discontinued the oral Zofran we started a couple days ago, and so far Idan has not been nauseous. Tonight we will switch his continuous IV drip of tacrolimus to oral at 9PM as well. Tacrolimus is a chemo drug that Idan will be taking for the next 6-12 months to suppress his immune system and allow the donor cells to come in very slowly to reduce the risk of developing severe graft vs host disease (GVHD).  

Idan was thrilled this morning when we woke him and told him the good news about his ANC. He was in a good mood all morning, enjoying another drum session with the music therapist who already knew all his favorite songs by Twenty One Pilots. He then had a great session with one of the great teachers that have been volunteering their time and had a good lunch. He then jumped back into bed and took a 4 hour nap 🙂 Got to have energy to make those cells keep growing. 

It is a long long long road ahead with more dangers then one would like to outline here. Once we transition to outpatient, the journey will still only be in its infancy. We will have to wait two more weeks to test his chimerisom for the first time to see what percentage donor his cells are. We have to hope that Idan does not get GVHD, or more realistically to hope that the GVHD is acute and mild. We hope that he stays virus and infection free and has no reactivations of any viruses hiding in his DNA. And we hope that his new immune system continues to grow and thrive as we wait for it to become fully functional.

Today 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.

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.

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.

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.

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!