Hunter did not want to come to Houston. He just wanted to sit at home and tough out the muscle pain and told me his arm strength would come back when he got off steroids. Yesterday it looked as if he was right. The neurologist and his transplant doctor felt Hunter was suffering from steroid withdrawal syndrome, and were coming up with a game plan to treat his pain as he came off the steroids. Basically his muscles have grown accustomed to the anti-inflammatory properties of steroids, and are screaming that his dose was being reduced. His pain was much better yesterday, and he was as comfortable as I've seen him in a few weeks.
But then his hemoglobin dropped again today, this time to 8.9. His Coombs test that shows cell destruction was still negative. Dr. Carrum called the blood lab and had them manually look at his smear under a microscope. This sample showed many immature red blood cells and his retic level in his blood work elevated because it's working overdrive producing red cells. His conclusion is that Hunter's antibodies are attacking and killing off his own red cells--Hemolytic Anemia. This is what he suffered from last June. We did not want another diagnosis but we got it.
He will be treated with high dose steroids, and IVIG treatment. IVIG is a mix of a whole bunch of donor's antibodies mixed together, and they flood his immune system with so many different antibodies they it slows down his red cell destruction. It is the short term solution. The long term fix is Rituxian, which is given via IV weekly for 4 consecutive weeks. Before they start Rituxian, which makes you more vulnerable to infection, they wanted a Lumbar Puncture or Spinal Tap to rule out any viruses. After not being able to eat and drink all day (which come to find out was unnecessary) they finally took him back at 4:30. Kinda makes a bad day worse. He hasn't had any medication all day. And he's got a lot to get down. The next 12 hours his instructions were to lay flat so he doesn't get a spinal headache. Hunter is a trooper. It's been a really unpleasant day.
The good news is that Hunter responds really well to treatment. He is not near where he was last June. The rounding doctor today told us that CGD patients who undergo transplant, for reasons unknown, just have auto-immune responses. Little by little they get more and more mild, until they eventually just quit. This was the most comforting thing that we could hear. It might have been nice to know before transplant, but regardless we know there is a light at the end of the tunnel. Eventually his body will accept his graft and he will have a normal immune system. Someday, just not today.
In the meantime, he's back to high dose steroids, and a hospital stay until at least Monday. The rest of his treatment can be taken outpatient in Abilene. We are praying his spinal tap comes back negative for anything weird and we can just get this over with. His muscle pain hopefully should go away since we're going to be giving them what they want--more steroids. Possibly his nerve pain and muscle weakness is related to his auto-immune response, but no one is sure. We are glad we are in Houston, but so frustrated that he is still having complications.
Call us crazy, but we did have a little laugh at Hunter's expense. PT came by to evaluate his muscle weakness. They went for a walk, but not before they put a little leash on him. When you can't feel your feet, fall, and probably break your big toe, you might just have to be labeled a fall risk. His feet are numb and he can't even tell his toe hurts.
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| going for a walk |
We ran out of town without any prior warning. Team Hanner has got our kids well taken care of. After church Wednesday they went to Honey and Poppa's house until we get back. Thursday after school they went to the West Texas Fair and Rodeo. Erinn is an incredible friend. She taught school all day then wrangled our busy boys at the fair. They were all happy as toads. We are so blessed that we have people in our lives that love our boys. We thank Aunt Ernie is going to make an incredible wife and mom someday, we just need to find that right man;) After rides, dipping dots for dinner, and cotton candy for dessert, they called it a night. Honey and Poppa got Benton off to school today, and the twins to their ear checks.
We just thought we couldn't take any more bad news. Then it came. But with it came hope that eventually transplant will be just a distant memory. A story that we will hopefully get to share often how God has worked in Hunter's life. Today was very emotional and we are trying our hardest to gear up for more than what we bargained for. Truly, we have to take it hour by hour, and day by day because the big picture is too much for us right now. We would ask for your prayers for Hunter to remain comfortable and pain free, for the test results we're waiting on, and for the hemolytic anemia to quickly get under control. Some days, you just have to yell curse words. Loudly. Possibly while waiting a long time in the holding room before your LP. I think God understands that one.
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