We had a little surprise today. When Clark’s numbers from his daily blood tests showed up, he had a number greater than zero for his ANC (absolute neutrophil count). ANC is effectively a number that is calculated based on white blood count (WBC) times neutrophils. ANC represents the virus fighting power in Clark’s blood.
Needless to say, those cells can’t be transfused, so they only come from one place… Clark’s bone marrow!! Today, Clark’s ANC was 140, up from 0 just a couple of days ago.
Is this engraftment? Technically, no. The doctors consider it engraftment once Clark’s ANC reaches 500 for 3 consecutive days. But is this a good sign? Absolutely YES! The ANC will continue to fluctuate as we go forward, we just need to see an upward trend over multiple days. If tomorrow Clark is only at 50, that is fine and is still completely normal.
We had another milestone today; Clark started Cellcept orally! He had been taking it through IV, but they decided to switch him over based on his great progress. Most kids start switching to oral meds a bit later in the process, due to mucositis or nausea, which lead to emesis. Clark has had a few bouts of emesis, but nothing serious enough to prevent him from taking oral medication.
Clark also had a visit from the speech therapist (ST) today. Clark is now 21 months old, but isn’t saying any words. We thought it might be a good idea to see a ST to evaluate Clark, and to learn if there are ways we can help him out. Personally, I wasn’t too concerned since Connor was about 24 months when he decided to start speaking. But, since we are here, and the ST was available, I thought this might be a good time for an evaluation.
TIL a ST does a lot more than teach someone how to speak, they find out WHY they aren’t speaking. For example, if Clark was deaf, he would have more difficulty learning to speak than others. There can also be physical ailments such as a cleft tongue or a voice box that isn’t fully developed. Or there is the possibility of a mental disability that can hinder speech.
Thankfully, in Clark’s case, it just seems to be a slight delay in speech, unrelated to a more serious problem. He does not have any hearing loss. He can make sounds, proving that it isn’t a physical problem, and he fully comprehends what we are saying. I was given some tasks to preform for a few months, or until Clark starts speaking. We will continue to teach him names of body parts, learn animal names (from looking at pictures) and make sounds together. We can make animal sounds or have him copy simple sounds that I make. All in all, this feels more like a game instead of work. :)
ANC can’t get to 500 without first passing 140, so I think this is just an absolutely fabulous sign of positives to come! I am sending love and air hugs over the miles and through the walls. Go Clark Go!!!
Hi Clark – Your picture today looks so good. Connor is just waiting to be able to visit with you – so keep those good cells growing!!!! He is learning to swim so get Mommy and Daddy to show you his swimming pictures. Connor plans on teaching you to swim when you are better!!
Love, Connor and Granmom
This is awesome news! Love the positive signs.
And glad to hear about his speech. Pretty soon it will start and won’t stop. ;)
Hey, Clark. Great news. We are on vacation now and read about how well you are doing each and every day and we are so pleased. Every day is a step in a positive direction. Hugs to you and Mommy and Daddy and Connor.
Kanval