Thursday, 3 October 2013

Checking in on Nic

It's been a while since I've updated on Nic's health, and since he had his bi-annual hematology visit this week, I think it's time. Nic continues to do incredibly well. His blood work came back even better than we expected. His hemoglobin was 10.6, his fetal hemoglobin was 28.1, and his retic was 6. Those are fantastic numbers for someone with homozygous sickle cell disease . It is especially worth noting that his fetal hemoglobin has been stable for over six months. Since he came home it has dropped by about 2.5 percent every six months, so we were expecting it to be close to 25% this time. We would be over the moon if it stabilizes at 28%. If this trend continues it is likely that he will have a milder sickle cell course, although SCD is a pernicious and unpredictable disease so one never knows. We think that he had his first sickle-related pain after the last time he was in the hospital, but we can't say for sure because he still has a hard time communicating when he is in pain. It was not so severe that it required medical attention, but he was up at night complaining that he hurt. Also, he was very anemic during his last illness and was extremely lethargic for a few weeks afterward. It was difficult to see how much his exhaustion impacted his quality of life, especially knowing that he will deal with severe anemia repeatedly throughout his life. However, that only lasted a few weeks, and since then he has been our regular energetic and cantankerous little pickle.

Nic's growth has been fantastic; he has beat his curve and is now in the 75th percentile for height and over fiftieth for weight. His spleen is completely soft, he has no jaundice, his heart and lungs sound normal, and he is otherwise looking good. If his yearly transcranial Doppler comes back clean then we will be set. Please pray for this, his health is so good I am nervous about it. Honestly, whenever we get a really great report I remember how well his initial physical in the US went, and how the doctor told me that pending blood tests (which he believed would be normal) that Nic was extremely healthy...and then he wasn't.

We are very thankful that Nic's disease course has been so mild, and I want to stress how good we have it so that those of you who aren't familiar with sickle cell disease understand that most people with SCD have a much harder time than Nic. I just got back from the SCDAA annual conference (which was AMAZING), and I'm always struck by how easy we have it compared to the stories that I hear from other parents and individuals living with SCD. We have an incredible hematologist who listens to our concerns and answers our questions thoroughly, Nic goes to a beautiful hospital with new everything and free valet parking at the ER (seriously, this is the best), and we have a wonderful local support group (SCDAI) that has embraced us and taught us so much. Many people with SCD struggle with far greater complications like stroke, intense and extreme bouts of pain, leg ulcers that last for decades, respiratory issues, organ damage and failure, blindness or impaired vision, joint failure, and of course, constant, chronic pain. It is hard to meet people who cope with these things every day knowing that this could someday be Nic's reality, but so inspiring to hear how they have fought through many obstacles to accomplish amazing things. We hope and pray that Nic will never reach such a hard place. It is very possible that better therapies will allow people with SCD to have easier and healthier lives. But if nothing comes of all the research and new drug trials, and if his disease progresses, we hope that he will have the faith and fortitude to fight.

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