again, written by our dear friend anna…
I had a chance to talk with Ginger tonight [last night, 14th] and wanted all of you to know how sweet Henry is doing.
He is feeling MUCH better! He wants to go home, and of course his parents want him to be able to. However, there are still a few issues that need to be resolved before that is to happen. Henry tested positive for a virus that causes Roseola, which will generally clear up on its own unless (as in Henry’s case) there are other complications. Here is how we can continue to pray.
Henry’s heart rate, while he sleeps, is unusually low. Upper 40′s to lower 50′s. It is rather strange and they don’t seem to have a definite answer for it other than that he is still sick and is recovering. We can pray that his heart will begin to work as an active child’s should. Along these same lines, please pray for Joey and Ginger as they take turns sleeping at the hospital. I think we all know how difficult it is anyway, but combine that with an alarm going off repeatedly throughout the night due to Henry’s low heart rate and you can imagine how worn out they must be.
hanging out with mama and Mousey
Another alarming issue is Henry’s low platelet count. His body seems to be recovering well at this point, but his platelet count is in the 12,000 range. An acceptable count would be in the neighborhood of 150,000. But Ginger told me that the last time they did a blood test on Henry when he was well, his count was between 300,000-400,000. Hopefully those numbers help you to understand how low his count really is. Again – it is odd that it should still be so low considering his improvement. Please pray that this number would dramatically jump in the next 24 hours. He will not be allowed to go home should it remain this way.
So far, the tests that are being run to rule out HLH have been coming back normal. There is one test still out that checks the NK (Natural Killer) cells – part of white blood cells. It is rather important that this test come back with normal results. Ginger was told today that if the results are abnormal, then hematology will recommend that they proceed with Henry as though he has HLH and begin “treatment”. What they mean by this is that they would start Henry on chemotherapy and radiation and ultimately, a bone marrow transplant. A very drastic response to one test.
That being said, Ginger and Joey are not convinced that an abnormal test result is a absolute that Henry has HLH. They would have to consult with many other doctors before that – and Henry is doing so well now, that it seems unlikely that the test would be anything BUT normal. But we also know that things have not gone “normally” for these boys from the beginning, so please pray for that normal result!
helping the nurse remove the IV tube
Caid and Ian
Please also remember Caid and Ian at home. Caid began school this week, so it was a particularly difficult time for the family to be split in so many different ways. Pray for a spirit of peace upon Caid and Ian as their routine and structure is in a time of upheaval.
Also ask for a huge measure of blessing and grace to be poured out on those that are stepping in to help care for them while Ginger and Joey tend to Henry and work.
Joey and Ginger are concerned that there could be some underlying complication with the boys’ immune systems that has not been found, or cannot be found due to the very little known about HLH. There seems to be a pattern in their illnesses. One that would indicate that the same “thing” is being triggered every time, causing the boys to react in the ways that they have every time they become very sick. If this is the case, and something can be done, please pray for wisdom for these doctors. That they would be able to see into this disorder, make sense of it, and be able to prevent these situations from becoming what they have. Each time these boys get sick, it becomes a gut-wrenching guessing game for their parents of what to do, when to do it, am I just being paranoid? May the Lord give them an abundance of mercy and clarity in these moments.
I know that this is such a well-known and used verse, but each word in it speaks to their trials:
6 Do not be anxious about anything; but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. -Phil. 4:6-7
So much anxiety surrounding the well-being of your children, anxiety about whether or not the doctors are doing the right thing, anxiety about whether or not YOU’RE doing the right thing, anxiety about their future. But by prayer and petition – OUR prayer and petition, on their behalf – with thanksgiving for the lives of these two little boys, we make our request to God. Knowing that He is able and willing to give a peace that passeth understanding – even when we question what is happening. Rejoicing that He WILL guard their hearts and minds.
Thank you, to all of you.