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!