Wednesday, June 12, 2013

We have been blessed with good news again after Eli's 9-month scan June 6. It was all clear (NED: No Evidence of Disease). I bought this personalized state license plate replica about a month ago because I felt so confident and he seemed to be doing so well. Then, we had a bit of scare or disturbing event the Saturday before we were to leave for St. Jude. He had an issue with his eyesight and some fatigue. But, the scans showed no evidence of anything abnormal. The shunt was working properly; the arachnoid cyst had not changed and is actually not near the optical nerves anyway. His labs were all completely normal, but his platelets were just under the low range number, but it was so slight, literally one number off. So, I’m not sure what was going on Saturday. So, other things from our trip: He had gained 5 pounds, but had not grown any. They are watching his thyroid gland closely
Eli waking up from seatin after his MRI
 b/c it will be the first to go giving them a heads up that his pituitary is not working. Thankfully, he is tall anyway, so we sort of started out ahead giving us a longer window to give it time to work on its own. We are not comfortable with the one homeopathic supplement we had for treating pituitary health, so I hope to find time to see what other options we have. I hate to do growth hormones, but if we have to we have to and we will be glad that they are available.

We learned some more good news or good explanation while we were there. We had been told and I had read that within the first year, and even the first two years, there is a high probability of relapse. So, we were counting from the end of treatment, which was in August. But, it turns out that they
Looking at his MRI scans.
count from diagnosis, so we are 6 months done with the first year! And, we are only 6 months from the two year mark. It is only statistically, but still, since we don’t have a crystal ball, we gobble up any kind of predictive info and I will take that! My concern is beginning to swing to his ability to function normally within society and I see so many horror stories from brain tumor families. I’m not sure how to prepare him or us for this long-term care. I don’t want to look back at this time and wonder why I wasn’t more proactive for him. Anyway, my thought processing is shifting.

We got the 102 remote controlled cars to the right people, and how great was that! We put stickers on all the boxes that showed a monster truck and said “Keep Your Wheels Turning! From Friends of Eli.” I did cheat and gave one of the cars to Joaquin, a little

The final count.
  boy that we had been in treatment with. He is German, but lives in Guatemala, so he speaks no English except he had learned to say “Thank You” very clearly in English. He is Eli’s age and is pretty identical to Eli’s diagnosis and treatment. I wrote about him very early in our arrival to St. Jude. He was basically a vegetable. He was in a wheelchair, had no control of his extremities and screamed his head off solid. He was pitiful. I had been so worried that we had not seen him since they left last August from treatment, but there he was at the Grizzlies, all climbing on the playground and talking to his dad. I was just so glad to see him, I couldn’t resist giving him a car even though they were meant for the 2nd floor treatment, but I pretended it was the one we bought. We had quite a time getting 102 cars in our car. I had them in boxes, but then couldn’t get the packed boxes in the back of the RAV4, so we just had to take
 them out and put them in one by one. They were on the top in the cargo carrier, and they were even under the kids’ feet and in the middle of the seat, anywhere there was a rectangle opening, I put a car. Thank you all for your help with that.  

Packed with remote controlled cars all the way to Memphis.
Eli gave his first little cancer survivor support group “speech” Tuesday. It’s about 12 seconds, I think, maybe 15. He was reluctant when I first told him that I wanted him to do it, but we wrote it together and he was good to practice it a few times. When we got to the meeting, he whispered to me several times asking when he was going to do it. Then when I told him that I thought he would do it in a minute, he showed me the palms of his hands and he whispered, "They are so sweaty." He was patient through the speaker (which obviously is not going to be geared toward kids) and then did really, really well when it was his turn. It is nothing that will just blow you away unless you watch and listen with your heart, understanding that this is not Eli, personally, but a representative of children facing evil. I am trying to make Eli understand that he has a unique opportunity as a child to help people by just being a child and then just telling them about his experience. So, he talked about having great medical care, but most importantly that he had world-wide prayers working for him. It was a special milestone tonight.
At the zoo after our good news!

Our St. Jude half-marathon team is up and “running”. One hundred percent of your online donation goes directly to St. Jude and our team gets credit for raising it. I figured up that if our team could raise just $9,000 it would only be half of one percent of what St. Jude needs to operate one day. Donate directly here. That is a lot for one team to raise, but I think we can do it. If you have ideas for an easy fundraiser that you can pull-off in your hometown for us, please let me know and let’s get it going. We have an auction in the works, so if you have some items that could bring in a sizeable amount, please let me know. I would love to have like free hotel or condo stay, and I would love to have some football tickets for the fall, even the off games would be great to have to sell, and, of course, a car.

Giving a Thumbs Up
When we returned from Memphis, we hit the ground running! Hg went back to volleyball twice a week, and the other three are in soccer camp, the girls head to Bible camp on Thursday as well. We will be starting them on some kind of at-home tutoring and helping Eli finish his schoolwork in time for third grade. I started back to my workouts in prep for the December race, but it is still sporadic. I hit -31 pounds but I think I need to work harder at what goes into my body and less at how much goes into my body. I think that is the key to a real health overhaul for the long-haul. But by the time I’ve waited until I can get to a time for me to prepare something healthy for me to eat, the day is gone and I have had very little. That is just not a good way to lose weight, not the way I want to lose weight and will have the opposite effect eventually. I’ve got to get more serious about a job as well, but having been out of work for the past
 12 years, I think Vic will be disappointed that the level of job I will be able to get will only exchange financial grief for time and efficiency grief. But, as with the kids, you can’t’ tell them, they have to experience it on their own. Oddly, I would probably like a job.

I hope you can see this video of his little "speech." He talks very slow and quiet.

Eli at soccer camp!

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