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3/8/2010 Monday

Boy time flies! I have been a little tired lately and couldn’t muster the effort to head upstairs to blog blog blog (Paul’s laptop from school which I normally use is on hiatus). Poor me right? ;)

William and I stayed home a week ago today to rest as he had so graciously kept us up from 1:00 am until he fell asleep just as my alarm went off for school at 5:30 am that Sunday night to Monday morning. Since about February 27th he has been having really low grade fevers of about 99.5 degrees and has not been sleeping trough the night as he typically does. We felt that he was most likely teething, but as always we worry and want to make sure that it is not anything more. Last Monday after waiting all day to hear back, I talked with our Hematologist and she thought I should take him in to see our normal peds Dr. to get him checked for ear infections and pneumonia.

Luckily our clinic took him at the very last minute and the Dr. felt that we were probably right, just teething with a bad cold to boot. He said once again, that if one didn’t know that William has something serious going on with his white blood cells, he appears to be a perfectly normal 1 year old with 3+ cutting teeth and a killer cold. “Beautiful ears and clear lungs!”

We have kept an eagle eye on him since and luckily our daycare has allowed him to come even with the low grade temps. Each day at daycare he has done very well, playing, eating, and talking up a storm. Often the temp subsides as the morning goes on and he seems fine the rest of the day. This continued through this past weekend as well. (So despite a lot more waking up at night, a nasty runny nose, and crankiness here and there…he has been doing ok.)

Today Paul took Liam to a scheduled appointment at Children’s Hematology clinic to check in on how things are going with him. The Hematologist wants to see him approx. 1 X a month and she wanted to run some more labs like she did last time to see what is happening with his blood cells. Last time she found that signs of Roseola showed up in his blood stream. It showed that he had had a past exposure, (Makes sense since that was what he had when all of this Neutropenia drama FIRST began back in December) but also showed that there may be more of something live in his system. She wanted to keep an eye on that and so that was part of the need for the lab draws today. She also wanted to check to see if the antibody that kills off his neutrophils is still present in his system or not. The last time they checked it did not show up, however the error factor in this particular test usually falls on the side of saying it is not present when it really is.

Liam did have a 99.5 degree temp at the Hematology clinic today and so upon further examination she thought she may have seen some fluid build up in one of his ears. To be on the safe side she put him on an antibiotic. Hopefully this will help with the temps he keeps experiencing. I was lucky enough that Dr. Schultz had Paul put me on speaker phone so she could explain things and talk with me during their appointment. (I work a lot later and would not have been able to make it in time so after my students left I got a call and could be a part of the visit. She is SUCH an amazing Dr. and a wonderful person as well).

Dr. Schultz also mentioned that her next preferred move would be to give Liam a round of IVIG treatment sometime in the near future. I have blogged a bit before about IVIG but I think I may be able to explain it a bit better. Basically this is an antibody product from many different people’s plasma. She said ideally Paul and I could just give him our antibodies, but unfortunately one or two people’s bodies cannot make enough it takes MANY people to get enough antibodies. The good thing is that this product can be fully “Scrubbed” with detergents so it is a lot safer and the risk could then be comparable to getting a blood product from an anonymous donor. What they will possibly do is give him this antibody product to see if his immune system will attack. In the mean time his system may “forget” to continue attacking his neutrophils. (Apparently before GCSF the drug they have given him to raise his neutrophils they used to use IVIG). If it works, it would tell us that this neutropenia he has is caused by something viral or possibly could still be Autoimmune Neutropenia (the childhood version that goes away). If the IVIG treatment does not respond the way they are hoping, then there is more of a chance that Liam’s neutropenia is congenital (and more permanent). In that case our next move would be to do another bone marrow biopsy, but we’ll wait on that until it is necessary.

Dr. Schultz is willing to wait for this treatment/test until my spring break (last week in March) so that we don’t have to miss as much work. She explained that we would have to plan on spending a whole day at their clinic (with the hope that we would get out much sooner). Apparently the IVIG is administered through an IV very slowly. Some of the side effects or concerns (Which is why they only administer this in a clinic or hospital setting) would be: an allergic like reaction, a severe headache due to Aseptic Meningitis (NOT anything more than an irritation of the tissues and is NOT an infection like typical meningitis), danger to kidneys if not well hydrated (don’t worry they check 1st), and possibly a few other issues. This sounds scary, but Dr. Schultz said that they administer IVIG in their clinic every day and rarely has she seen any of these side effects. She explained how fully prepared they are to handle them though.

When I talked with her last Monday over the phone she had a good handful of positives for us. At this point we get to stop the finger sticks to check his blood 3x per week. YAAAAAAAAYYYYY! We will now take him to check his neutrophil levels 1x a week! I keep saying, “What will I do with all of my free time???” She said that thus far she has not seen any cycling patterns in the blood study that we have been doing over the last 6+ weeks. This is great news as a cycling pattern would make us lean towards Cyclic Neutropenia which is a permanent condition.

She also said that in the last few weeks she thinks that although very minute, she has seen an upward trend in his ANC (Absolute Neutrophil Count). Typically in the beginning his counts would be around 0 to maybe 100. (Remember 1500 is the BOTTOM of the normal range). Lately his averages are more in the 200 range. Dr. Schultz hopes that this could mean that, ever so slowly, his condition is improving.

Right now it seems that her ultimate hope is that we find that Liam’s neutropenia is being caused by some sort of VIRUS in his system that is not going away and has not allowed his system to let mature neutrophils out into his bloodstream. She feels suspicious of the Roseola that showed up on a recent test, and she again has not ruled out the possible H1N1 he experienced in October. There are more possibilities, one being Autoimmune Neutropenia which should go away by age 2. There is still the possibility of something permanent but it seems that each time we talk with Dr. Schultz she leans ever so slightly further away from that. It helps us to keep our sights on the positive things we experience and to be patient while things slowly get weeded out.

Thank you to all of the many people (many we don’t even realize or know about) that pray for us and our little guy. We know he is SO loved, and his beautiful smile and tight little hugs around our necks tell us all how much love he has to give. We’ll get there!

Love,
~Katie, Paul and Liam Moeller