Friday, August 22, 2014

Eli loves watching the weather. When we were in Memphis earlier this week for his MRI to check the status of the disease, the weather was hot and thunderstorms were just kind of popping up randomly. On Tuesday, when we went in to St. Jude for the results, he excitedly pointed out that a dark, stormy cloud was hovering. When we came out later that day, after receiving the great news that the lesions were continuing to shrink, then completing the rest of the appointments, Eli said, “Look mommy, the dark cloud is behind us now.” I almost cried. Yes, it was! There will be more, but this one cloud has moved on.

The doctor said “we had to hunt for it,” referring to the cancer. They were impressed enough with the progress that they were comfortable to move Eli from eight-week scans to 12-week scans. So, it’s not
gone, but the couple of places left are small. The doctor seemed very pleased with the results, and I would almost say that he even seemed almost hopeful. Eli completed cycle 8 and I think I understood that the positive response has lasted longer than the doctor would have expected. There is data to show both short and long-term response, but he seemed to expect it to give out by now. I cautiously optimistic about that. So, even though it is still a band-aid, the treatment is doing what we had hoped, which is to buy time. How precious time is!

While we were there, Eli also saw the dentist and the endocrine doctor. He has four cavities that we will have to go back to Memphis to have filled, and they will pull a tooth or two while we are there. Dental work is something they do not take lightly
when the kids are on chemo and have low counts and low platelets. The chemo and the radiation
 affect the teeth enamel, and I imagine all that puking that he did during his first treatment didn’t help the enamel either. And, it can’t help that he is not a great brusher. So, we will be going back to Memphis sometime soon for that.

The endocrine visit went pretty good. You might remember that just before relapse Eli had started growth hormone shots. He is growing just a tiny bit on his own, and his thyroid is normal. Evidently, this is strange to have a normal thyroid and less than normal pituitary (you might remember that his original second largest tumor was at the pituitary gland, so that area got fried with radiation). Usually, the thyroid gives out, then the pituitary, but Eli is doing his own thing as usual. They just want to continue to monitor all of that.

So, we are staying the course. Dr. Robinson said that since the disease was responding, we would keep pounding on it until his body tells us it has had enough. So, either until the cancer goes away, or until his body can’t recover from the treatment, (for example, his platelets are consistently low and he needs infusions), or until the cancer comes back. His hair and eyelashes are thinning now. He is also starting to look a bit gaunt. I pray to have the chance to see his thick dark hair and long lashes again. I am cautiously allowing my mind to think that I might. Nine months ago, I never would have thought we would be where we are right now.

We took everyone to Memphis. I gambled and lost on the hotel suite. They did have “room at the inn,” so we had to get a hotel for the rest of us. Except for spending the money, it worked out. Vic and
 Eli stayed on campus and just walked over to the hospital in the mornings. On Monday, when Eli was getting the MRI and the longest appointment day, I took the three to the Children’s Museum of Memphis, which was really cool and they enjoyed that. At his next MRI, they want him to try it without sedation. It will take two sessions, so we will be gone an extra day, but it
Getting an oral x-ray.
will be better for him if he can do it. I had not actively had any kind of a drive this time to bring anything back because someone gave me a pretty good size load of stuffed animals, and I had bargained with Wal-mart to sell me some clearance puzzles, so I had a load of toys to take to Target House already. So, we will be collecting gently used Halloween costumes to take to Target House next. So, if you have costumes that are in like new condition with all the pieces and parts, or if you see some cheap ones on clearance, watch the blog for details on where to drop those off at.

I can’t seem to get much traction with the homeschooling. It feels overwhelming and foreign. Hg seems to be doing decently, and she really enjoys going to the on-campus classes, but I can’t seem to
get satisfied with Eli. Hopefully, with this scan behind me, I can concentrate and do better by him. Right now, he is getting short changed by my short-comings.

I am distracted a lot by our preparation for September, which is Childhood Cancer Awareness month. We are having a great response to our Superhero Fun Day, which is September 13 at Big Spring Memorial Park in Athens. If you would like an event t-shirt, which has the gold ribbon on it and superhero logo, you can order from the website at www.ourlittlesuperheroes.com. Please, encourage businesses to dress as Superheroes on September 12 to help raise awareness. Also, this week, the marker was laid at the tree that was planted in the park in honor of the cancer kids. I am so
Vic as Spidey.
 proud of our community and its willingness and enthusiasm to support our childhood cancer fighters.

We were proud to be back at the clinic to begin cycle 9 today. His ANC was pretty good considering this is number 9, but his hemoglobin was low, which was weird. He still got the whole dose, but I hated to start the cycle low on anything because it will only go low from here at the end of the week. So, pray that he doesn’t need any transfusions during this recovery period.

Brayden is fighting, please remember him, and remember a little boy named Grant who is fighting. I was thankful to see that little Aaron received good news that his scans were clear. I wish I could
We found Batman at a local salon that is sponsoring the event.
somehow accurately and adequately express to you how deep my humble gratitude runs for your interest and effort in praying for Eli. Thank you for your petitions, I know they are being heard.

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