Thursday, December 5, 2013

My phone was dead most of the evening yesterday… and it was so nice! Not because anybody was calling or texting me, but because I was unable to use it. I was forced to sit down, watch and listen to the boys and soak in a warm December breeze. The boys were in really good moods, but we had been at the hospital campus all day so they were wound up. Eli had endured sitting for a 3-hour psych test, plus other appointments, and Caleb had to sit and play video games all day while I talked to staff or filled out questionnaires. I knew that today it was going to be rainy and cold, plus Eli would be recovering from sedation this evening, so our best chance to get out and run around was last night, and they had plenty of energy. So, we tried to go to the zoo, but it was 1630 hours and they were closing, so we went to eat nearby and then to Target House. We turned in the cars at Target House and the boys got to run around on the playground and we took a walk around the compound.  It was spring-like last night, so it felt so familiar sitting there on the playground, and then with the walk. Eli and I took that walk pretty much every night during his treatment. The boys held my hand and chattered and chattered… and fussed as we walked.
So, yesterday, we had an endocrine follow-up to see how the growth hormone injections were going. He is handling it fine, which actually makes me nervous. The dosage is small and when I give it some medicine backs out of the puncture wound. I hold the shot in place like I was told, and still have the problem. So, they changed the gauge of the needle and had me hold it in place twice as long, but more came out than usual. If that happens every injection, then is he even getting anything? Anyway, a bother that is important, but just add it to the list. At his audiology appointment we learned that Eli has lost more hearing, so he will have to wear the hearing aids now, he is no longer border line. I won’t complain about it, I understand that there is a cost, but still it is a challenge he will face and it makes me sad. She also said that he has impacted wax deep down, so we will need to make an appointment with an ENT to dig it out. I haven’t heard about the EKG, I’m hoping that is a good sign, and he took a pulmonary test today that I haven’t heard back from. But, the guy said it didn’t look like anything had changed.
So, today, in addition to the MRI, which is the heaviest on our minds, he had a speech evaluation, which on the surface seems innocuous. But, the testing is a good, general way to measure his cognitive skills. I am trying to keep everything in perspective and am deeply grateful for what we have, but I am disappointed that he is beginning to show the cognitive decline that we were told would come at about 2-5 years out. And, Vic and I suspected it because his grades have begun to slide. She said the decline he is showing is consistent with radiation damage. She said he was capable of understanding content and information, but the processing is slower. For example, if he were given the instructions: “Take your jacket off, hang it on the hook, sit down and turn to page 102 in your English book.” He knows how to do all of those things, but his brain would only get so far. He might hang up his jacket, and sit down, but that would be as far as he would get. So, her findings and that of the psych testing will be compiled and they will make recommendations (what does he need out of school, does he need tutors, if so what kind, etc). She said there is no way to know how far he will continue to decline, he may not any more or it could continue for 4 more years. Again, I know there is a cost, and I am sad about it - I just can’t not be - but I am trying very hard to focus on how to handle it, our plan of attack instead of what is happening because I am thankful every minute of every day for what we have had access to and how it saved his life. I just pray for his future.
He came through sedation for the MRI fine. It wipes him out a little, so we are hung out in the hotel room and watched Bubble Guppies Puppy and the Ring, SpongeBob Christmas specials, and Muppets Christmas on TV, eating pizza, and doing two small loads of laundry. The hot topic around Memphis today is the ice tomorrow. As most of you know I have been working toward participating in the St. Jude half-marathon set for Saturday. My small team raised almost $10,000 for st. Jude, which is half of 1% of what it takes St. Jude to operate one day. I am extremely proud of them and this would have been the first half for a few of us. Yes, would have been. I am depressed tonight because the emergency management agencies around Memphis are asking that travel tomorrow be restricted to emergencies, yet the race is on Saturday and race events are proceeding. The problem for me is I have the boys and now Vic can’t easily get here. He doesn’t have the leave to take the day off so he can’t leave until late, which makes travel more dangerous that long into the storm. So, things may change tomorrow, but as of right now, I will not be able to run Saturday. It is very disappointing. It just figures because I requested that Eli’s scans be this week so that we would be here already for the race. Well, I guess that backfired. If I had come alone, traveling in bad weather wouldn’t be an issue and I wouldn’t have any kids that needed to be kept for me to run. So, our schedule has changed in that we should be done before 10 a.m. tomorrow, but I don’t know yet if that means we will come home or hunker down somewhere here until it passes. It just depends on how bad the weather actually is tomorrow; maybe the forecasters are being overly dramatic.
I will post results tomorrow as soon as I can. Thank you for your continued diligence.

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