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3/12/2010 Friday

What a week! We got home last night from a stay at Children’s Hospital St. Paul again. Paul took Liam in for his follow up appt at the Hematology/Oncology clinic on Wednesday morning at 9:00. I called to check on them during my lunch at school and found out that they were still at the clinic. William was getting IV antibiotics and fluids at that time. He had 3 pokes before they could get the blood they wanted for tests. Paul said they were trying to decide if they wanted to admit him to the actual hospital or not.

My good friends at school convinced me to just leave and that they would take care of everything. So after 2 bites of my sandwich I scrambled to get down to the Hem/Onc clinic. I got a call on my way that they had already made the decision to admit him and that we would just be waiting for them to get everything set up for us.

It turns out that they did a test on Liam’s blood called a CRP which means a C Reactive Protein test. It serves as a marker for inflammation in one’s system. If the marker goes up they can tell that your body is fighting something. Unfortunately it does not tell you anything more, like what or where the issue is. Because the CRP came back higher than it was in the ER on Tuesday they wanted to admit him so they could monitor him more closely, and give him the IV antibiotics without us having to get up in the middle of the night and go in or something.

One positive thing they found though was that Liam’s ANC (Absolute Neutrophil Count) was in the 900 range. This means that since he is really sick, his body was actually trying to respond with some Neutrophils to fight it off. (Generally he doesn’t do this on his own). So we stayed at Children’s from around 2:00 p.m.on Wednesday until 4:30 p.m. Thursday. They have been keeping him on Tylenol, and Motrin to keep his fevers down. They have gotten as high at 103.3 degrees and he is pretty miserable when they fevers come back. They also had him on IV antibiotics, an iron supplement, and G-CSF the medicine to help raise his neutrophil count. It was nice to see him happy, playful, and feeling well when the medicine was working, but any time the fever reducers wore off he was a mess.

On Wednesday evening our Hematologist stopped by to hare some news about his Neutropenia. She decided to call “THE Neutrophil Guy” who is named Dr. Boxer. Apparently he is in Michingan and specializes more than anyone in Neutropenia. He is the head of the Neutrophil Registry (Which I will get to in a minute). She wanted to share with him the results of William’s 6 weeks of finger pokes to see if he agreed with her findings. He was quick to agree that he did not see any signs of cycling in the 6 weeks of blood tests. He felt that at this point they do not believe that Liam’s Neutropenia is “Cyclic” (which is just one form people get). This is great news as Cyclic Neutropenia is permanent and must be treated with G-CSF to keep those that have it healthy.

Dr. Boxer also agreed with Dr. Schultz that at this point they can lean pretty far away from Congenital Neutropenia! They both feel that at this time his low neutrophils may be caused by Autoimmune Neutropenia (Which usually goes away by age 2). Generally they cannot diagnose it as such until it actually goes away, so we most likely will not be sure until it’s gone (God willing). Now William is not a textbook case of Autoimmune Neutropenia though. Most kids that have it present their issues a lot later than 9 months (when he did) and generally they do not have infections as significant as he has endured. Most of the time I guess they just have low neutrophils. (It’s pretty likely that although it is very rare in general, many kids have had it and no one ever knew that they did).

Because if the fever issues William has had, Dr. Schultz was planning on doing a treatment of IVIG (see the blog from 3/8/10 for more info on that). She talked with Dr. Boxer about it to see what his opinion was. He said that he would not recommend it, as it is not all that successful, and a bit risky. Instead they came up with a new plan for Liam that I think we feel pretty good about right now. To get him well and through the next few days, we will be giving him a shot of G-CSF to get his neutrophil count to a normal level. That should help him to fight off any infection in his system (as a normal healthy person would). Then after this is over, they think we should try giving his a low dose of G-CSF every other day to keep Liam’s level at a “nicer” number. This won’t mean that he will be in the normal range most of the time, but hopefully we will get him boosted up a bit so that he has more energy than he has had in the past few months. (I was VERY pumped about that because I know there is a happier, more energetic boy hiding inside of him right now and the low neutrophil counts are keeping him down).

The next plan is that Dr. Schultz and Dr. Boxer feel that since Paul and I are very vigilant parents who really know our son, they feel that we will recognize when Liam is starting to get sick. They would like us to give him a full dose of G-CSF if that happens to get his numbers up right away. That way if we end up in the clinic or ER with another infection, we will have already power boosted his neutrophils. Then hopefully redness, warmth, and puss will show up where the infection is (That’s what neutrophils do). That way the Dr.’s can find and focus on the issue instead of just generally treating him.

Today a home care nurse will be coming to our house to teach us how to give him shots of G-CSF subcutaneously (in his chub). We will learn how to give him the shots ourselves. We decided not to go with the Insuflon catheter this time. (Last time we had one inserted into his arm so we wouldn’t have to poke him ourselves, we should just shoot the medicine into that). We learned that Liam could not take normal baths with the catheter, which he LOVES. We also will be taking him to swimming lessons in a few weeks so we don’t want to deal with keeping it dry (impossible). Hopefully we will get over our anxiety about poking him quickly and I know he will handle it well as he blows me away with everything he endures!

Now this weekend will be about fixing fevers, bringing up neutrophils, and fighting infection with antibiotics. Sounds like a blast!

Hope all of you are well. Thank you for your kindness, thoughts, prayers, and for following our saga!

Love,
~The Moeller’s