Check In 12/18/2009

12/18/2009 Friday

Today we went to the St. Paul Children’s “Hem/Onc” Clinic (Hematology/Oncology). We met with Will’s hematologist to check on his levels, his health progress since the hospital, and to hopefully find out a few test results.

Dr. Schultz thought he looked great. She even had to have us point out where the incision was on his bottom because it looks so good she didn’t notice it at first glance. Today William’s ANC (Absolute Neutrophil Count) was around 600. That’s quite a drop since Wednesday (1100) but Dr. Schultz had not seen his Wednesday count. When we told her about it she was pretty happy.

We found out again that an outlying test confirmed that there is no cancer anywhere on our radar! Always great to hear. We then found out that in one test, run by the U of M that they found an antibody in William’s blood that is killing off his neutrophils. The hematologist explained that this was an interesting thing. She said that this test CAN make mistakes, however generally the mistake will often say that a person does not have the antibody present when their body does really have it. She said finding out that your body is producing this antibody that kills his neutrophils COULD mean that this condition COULD be temporary, or a form of “Chronic Benign Neutropenia.” This can’t be fully confirmed until time passes, more blood tests are done to check his levels each week to look for patterns. Also we are waiting on some genetic testing that could take up to 6 weeks to process.

Here’s what I found out about “Chronic Benign Neutropenia” from an online brochure from Texas Children’s Cancer and Hematology Service:
“Chronic Benign Neutropenia is the most common type of neutropenia in childhood. Chronic is defined here as lasting more than 8 weeks. [It] appears as early as 6 to 12 months of age with frequent ear infections, sore throat, diarrhea, and other minor infections. (Now Liam has not had any of these conditions that we know about, other than the severe infection he ended up in the hospital for…but this is still a possibility, read on to see why). Neutropenia may be found only by chance, it continues for weeks or months with more than half the children having neutropenia for 18 to 20 months. The rest of the blood count is normal. The child usually appears healthy. The cause of this condition is not well known. It has been found that most children with this condition have autoimmune neutropenia. With this condition their bodies produce an antibody that attaches to the neutrophil and cause it to be destroyed. Forty to eighty percent of patients who have Chronic Benign Neutropenia have anti-neutrophil antibodies. The reason why these antibodies form is not known…”

At this time we do not know if Liam has Chronic Benign Neutropenia or if it is one of MANY other possibilities. This scenario would be our first choice though…

Dr. Schultz also mentioned that in her mind she still wonders a bit about the illness Liam had in October. (He was treated for H1N1 but we’ll never know for sure if he had it). She does not want to rule it out as a culprit at this time as we still know so little about the affects it has on people. I asked her what she thought we should do because Liam is due to get his 2nd round of the H1N1 vaccine. She said that she is supposed to tell us that he has to get it, but that if she were me, she might hold off on that for now. We totally agreed because if it has had anything to do with this mess we’ve been through we don’t want to risk putting any form of the virus in his system (even through a vaccine).

Here’s the plan we have for now:

Liam is going to have to get a finger stick 3x each week in order for them to do a CBC (Complete Blood Count). From that they will continue to track his ANC (Absolute Neutrophil Count) levels. This will help to benchmark what Liam’s neutrophils look like over a 6 week time. During this time if he does not rebound to a healthy neutrophil level they may put him on the medication called GCSF (Granulocyte Stimulation Factor) with a dose daily. He would get this subcutaneously (which means a shot in your fatty parts like Insulin, or though a tiny catheter that they poke into his arm and leave there. The second option would lower the amount of pokes to just one a week as the catheter is inserted).

There is a study program he could be part of that would pay for this drug (as it apparently can be very expensive especially if insurance won’t cover it)! In order to be in that program they need him to do the CBC 3X a week for 6 weeks. During that time we should learn a lot about Liam’s neutrophils, whether they go up and down in a cyclical manner, or if he stays low all of the time, etc. By the end of those weeks the genetic testing may have more answers for us as well.

We also have clear instructions for if he has a health issue (Thank God!). If he gets a fever of 101 or higher we must call the Hem/Onc clinic and have him seen. If they are closed we take him to the ER. Any signs of infection have to be taken very seriously. In the mean time, we just love and care for our happy little guy! (Oh and get him poked 3x a week ☹).

Dr. Schultz ended our appointment today by explaining something very clearly. After asking us how we are handling everything, she said, “I want you to remember something. This Neutropenia could be caused by one of many different possibilities. We have a plan for each one of them. When we figure out which scenario this falls under, we will know what we need to do next.” It feels incredible to know that we have a team searching to the ends of the earth to find a reason, but most importantly a team that stands ready to help us attack the issue no matter which it is.

I realize there are SO many details here and I hope some of this makes sense…there is so much more to it than I can even begin to type, but maybe this helps everyone to see what we are learning and how much there is to consider.

It’s been a FULL week going back to work and daycare, dealing with separation anxiety, visiting doctors, trying to navigate our normal tasks, and considering what we will have ready for Christmas. People from every aspect of our lives have sent word in some way that they are praying for us and thinking about us. THANK YOU! We are so incredibly spoiled to know and love so many people.

~Katie, Paul, and Willy-Poo
(P.S. Are you counting all the nicknames we have for our son?) ;)