Here is an overview of Morgan’s ANC (absolute neutrophil count) with the Neupogen injections. For those of you that just tuned in, neutrophils are the most prominent white blood cells that serve as the front line of defense against bacteria. Severe neutropenia is 0-500, 500-1000 is moderate and 1000-1500 is mild. A child under 2 has a normal count when it is over 1500. Neupogen is a drug that causes her bone marrow to work in overdrive to make more neutrophils to compensate for the ones that her antibodies are killing off. Morgan gets injections on Monday, Wednesdays and Friday evenings and we do bloodwork every Friday morning. Dr. Grayson wants to keep her counts between 1000-1500. Here are her counts from the first weeks of Neupogen:
Friday before Neupogen - 220
Week 1 – 1581
Week 2 – 2500
Week 3 – 300 (last Friday)
Wednesday morning of this past week – 600 and she was very irritable
Wednesday evening– started new vial of Neupogen
Thursday – great mood and very content!
Friday(yesterday) – 4500 and very irritable
Needless to say, we were very discouraged on Monday when we found out her ANC was only 300. We think she had a little stomach bug which could have lowered it. She was really irritable Wednesday morning so I took her to the pediatrician to have her checked out and to have bloodwork done. She checked out fine and her ANC was 600 something. Dr. Grayson said this isn’t where we want it but fortunately it is moving in the right direction.
I was so encouraged when she was in a wonderful mood this Thursday. However, she was in a horrible mood on Friday so I thought her ANC had dropped again. We were very happy to hear last night that it was actually very high at 4500!!! This is actually too high but at least we know the Neupogen is working. The high number also explains her recent irritability because Neupogen can cause bone pain and headaches. We are giving her motrin to help with this.
Obviously that is an extreme jump from 600 on Wednesday to 4500 on Friday and we think we know why. I found a new friend in College Station whose toddler has tested positive for AIN also. Actually, she found me through the Baby Center neutropenia board. It is really a God thing that we connected. We had dinner on Tuesday and are going to get together once a week. Kristy is very well-read and has a good understanding about the latest research and challenges concerning kids with Autoimmune Neutropenia. She told me that there is some controversy over whether to use the 1ml vials of Neupogen more than once. The nurse at the hematologist’s office told us to use the 1ml vials over and over until each is gone and showed us how to use it “sterilely”. However, Kristy showed me how the company clearly states that they are “one-time use” vials since they contain no preservatives. My question was then if the reasoning was to prevent bacteria from entering the vial or because the Neupogen becomes less effective. I called the same nurse the next day and she assured me it was only for sanity reasons and said the way she showed us to administer the medicine would keep things sterile.
However, I talked to Dr. Grayson that evening who said that using the vial multiple times could actually decrease the effectiveness of the drug. For Monday’s dose we were at the end of a vial, so we started a new vial on Wednesday and that explains the high number on Friday. Therefore, the nurse was incorrect which caused several of Morgan’s injections to be ineffective or not as effective. If Kristy hadn’t pointed that out to us, we would have kept wondering why her numbers were going up and down for no reason! I’m so grateful to her because I would have been such a basket case.
The drug is very expensive which is why wasting the rest of a vial is an issue for a lot of people, especially for those without insurance. In Morgan’s case, she only gets 0.17 of a 1ml vial. A box of 12 vials (4 weeks worth using 3 a week) was $3400. That comes to $283 an injection. Fortunately, our insurance is paying most and we’ll of course do whatever we need to for our baby girl to be healthy and happy.
It is SOOO good to know that the Neupogen is doing its job. We go to Temple on Tuesday for our monthly appointment. He will probably tell us to lower her dosage or at least that is what we are hoping. J He also told us that as long as we fill up three syringes at once on Mondays, they will be effective for Wednesday and Friday’s dose. I’m not completely sold on that idea since the Neupogen company clearly gives other instructions, but I will ask him more on Tuesday.
Jeremy just said to me how far we have come in the last few months. We figured out why she was sick all the time. We got a diagnosis. We found an effective treatment and as of a few weeks ago. Morgan is sleeping through the night. And more importantly, we know that she will spontaneously go into remission. We know that this will come to an end. God has been so faithful to assure me through this process – through His Word, through people, through songs, etc. He is so faithful and He has brought us a long way. One thing is for sure, our little girl is so special and he has some amazing plans ahead for our Morgan! Please pray she goes into remission soon, and that we find the right dosage so she feels better.
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