I anticipated this next post to read nothing but good news. It is not so, Last week I had gotten a phone call from Alec's transplant Dr. at 9pm telling me that his cortisole level was .1 another words he is not producing his own adrenalin, hence the reason all he does is sleep and is always in a depressed state.
Not producing adrenalin in an immune suppressed state can be life threatening. I had to run up to CVS and give Alec a "stress dose" of hydrocortisole. I was told to watch for excessive vomiting, fever, and abnormal blood pressure.
We had to bring him in to the hospital the next day, Wednesday to meet with his endocrinologist. After my excessive research on the internet that night; as it turns out his "appetite stimulant" can cause adrenalin suppression. They had just recently increased his appetite stimulant, magase to 2- 40mg pills 2x a day without checking his cortisole level prior knowing. I have been saying for weeks that Alec seems to be depressed all the time and just lays there. In any case I told them I want him off the magase. We are working on weaning him off because you can't just stop it. Then in a couple of weeks we will be weaning him off the cortisole to see if his body stars producing it on it's own. I am told that these effects from radiation usually don't occur so quickly, yet here we are feeling the effects.
During this same visit we went to his oncologist office because we wanted to know the results from the MRI,we were taken into a private examining room. You could hear mine and my husbands heartbeat pounding down the road. We still remained optimistic. In comes walking Dr. Atlas, his PA Alyssa and our Social Worker. I knew it, I knew it, why is my social worker here. NO NO this can't be please tell me my baby is fine, Oh God please NO. Mark our baby is going to be fine please tell me our baby is going to be fine. We were told that the last remaining spinal tumor that had begun shrinking was still there. Not only is it still there but it has begun growing again. The stem cell treatment did not work. It would have done it's thing by now. We had to bring him in Friday, the day after Thanksgiving for a spinal tap because his Dr. thinks it might have also spread now into his spinal fluid, where it has been negative for disease since prior to chemo and radiation. Of course Mark and I were fighting the tears as hard as we could because the kids were with us. We meet with a team of Dr.'s tomorrow at Schnieder we will have the results from his spinal tap then and from there I am scheduling an appt. with NYU as referred to us by our friend Kim, then to Boston Children's hospital. We are also going to start wholisic treatments, in Nevada or Arizona.
We transferred his hearing care to our local ENT we brought our older son Kevin to for years. Alec's hearing continues to decline due to nerve damage, he does need hearing aids, it is not just his high frequency that has been effected it is also his overall hearing. We go this Friday for another hearing test and to be fitted for hearing aids. With any hope we should have them by Christmas.
His mind is processing things alot slower, his short term memory has been effected. He has asked me 3 times this morning why the Christmas tree is set up.
He is eating though, he has gained weight, he is up to 39.5 lbs, up from 37 and we actually made it through the entire day yesterday with no vomit.
Please understand for those whose calls I have not returned and e-mails that have gone unanswered; it is too hard for us to keep repeating the same thing over and over again. We need too keep strong, Alec needs us to stay strong. We can't be around solemn voices and faces. We have to keep going. I will try to update this blog more often.
Until then please keep Alec in your prayers and all our HEMOC friends, Hannah, Stanley, Danny, Joseph, Teeya and all those on Med 4 and in transplant.