|SUNDAY, JULY 20, 1997|
PEDIATRIC OPHTHALMOLOGY, PART 2In my last update, I mentioned the appointment we had with a Pediatric Ophthalmologist (Dr. Berry) in Dallas on Thursday, July 10, to see about Ashley's eyes. After Dr. Berry did a thorough vision test and eye exam, we discussed treatment options to try to correct the double vision that Ashley has experienced since back in mid-March. Dr. Berry said that the injection that worked for our friends' little boy Chay, probably would not work for Ashley. Nor is her vision likely to return to normal on its own. Basically, the only other permanent option is surgery. But that will have to wait for almost a year, until Ashley is through with her chemo treatments.
There is, however, a temporary solution -- eyeglasses with special prisms on the lenses. The prisms would not actually make Ashley's "bum" eye move back to its normal position, but would simply shift the image that she sees so that the images from her two eyes line up properly to produce the perception in her brain of a single image (sort of like "tricking" the eyes into seeing only one of everything instead of two). One advantage of the glasses is that they will allow her eyes to begin working together once again, rather than independently of each other as they were when she always had one eye patched. This will strengthen her eyes and, according to Dr. Berry, will also increase Ashley's chances of a successful surgery to permanently correct her vision.
After seeing Dr. Berry on Thursday, we walked across the hallway to an optical store to pick out a pair of non-prescription glasses for Ashley. She found a really cute frame that she liked, so we asked the lady working there if she could have the frame fitted with non-prescription lenses by the next day (Friday). We wanted to get Ashley out of her patch before the weekend if possible. The sales lady said yes, so we went ahead and scheduled a follow-up visit with Dr. Berry for the next day, to have the prisms applied to Ashley's new glasses.
We went back on Friday, picked up the glasses, had them fitted to Ashley's face, and then took them next door to Dr. Berry's office. Dr. Berry re-measured Ashley's eyes to make sure she got the proper strength and alignment on the prisms. Then she had one of her assistants take the glasses and apply the prisms.
It's really cool the way the prisms work. They are not actually wedge-shaped lenses, but rather simply a sheet of self-adhering clear plastic with special lines embedded that refract light at a precise angle to mimic the effect of an actual wedge-shaped prism. The plastic prisms are applied to the inside of the glasses. They do not have any adhesive, so they can be taken off and put back on again (sort of like the little plastic reminder sticker that the 10-minute oil change places put in the corner of your windshield).
The assistant came back in with the glasses, prisms in place. This was the moment of truth. Would they really work? Ashley was anxious to put on the glasses and have normal vision for the first time in almost four months. She tried them on. We waited. Her bottom lip began to quiver, and tears began to well up in her eyes. They didn't work. She was very disappointed, and noticeably upset. She had so hoped that this little trick would work. I think she was really looking forward to this one little piece of her life returning to almost normal. But it didn't work.
Dr. Berry explained that it might take a few days of wearing the glasses for her eyes to get properly adjusted to them. Then they should start "working". But I could tell that Ashley was terribly discouraged. I didn't figure we would even get her to put them on again, much less wear them for several days to give them a chance. I was heartbroken.
We went to Wal-Mart over the weekend and got Ashley a really cute outfit. It is a denim dress with a blue plaid pleated skirt, and a hat to match. On Sunday morning, she wore her new dress to church. She wore her glasses also! She looked absolutely adorable! And everyone told her so. She kept the glasses on all day, and I thought to myself, "Yes! We're making progress!" She now wears her glasses regularly and keeps both eyes open, so they must be doing some good. For that we are thankful.
STILL THROWING UPAshley was still experiencing occasional nausea and vomiting, and it had been two weeks since her last chemo treatment. We asked Dr. Winick about this, because it was causing us some concern. Dr. Winick said that there is a thing called "somnolence syndrome" that some cancer patients experience anywhere from six to ten weeks following radiation.
What happens with somnolence syndrome is that the brain experiences a small amount of residual swelling, sort of a delayed reaction to the radiation. The swelling in the brain causes the vomiting center to be stimulated (similar to the way in which the tumor had originally caused this stimulation), resulting in occasional nausea and vomiting. Dr. Winick said that we could put Ashley back on steroids temporarily, or just wait it out. We decided (as did Ashley) that the waiting would be more tolerable than the steroids.
CISPLATINAshley was admitted to Children's Medical Center in Dallas this past Monday, July 14, for chemotherapy. This was the week that she received Cisplatin, the harshest of her four chemo drugs, each day for five days. She did fine after the first couple of doses, then she started getting sick. She was given Zofran (the "wonder drug" anti-nausea medication) before each treatment, but got sick anyway.
The doctors added another medicine, Ativan (generic name lorazepam), to asssit the Zofran in combating the nausea. Ativan is an interesting drug. It is in the benzodiazepine family of drugs, and is primarily used for the management of anxiety disorders or for the short-term relief of the symptoms of anxiety. It is also used, however, to help control chemotherapy-induced nausea and vomiting. It has a very strong sedative effect (hence we have affectionately dubbed it Ashley's "sleepy medicine"), and can even cause temporary short-term memory loss. It seems to help some in fighting the nausea, but still doesn't knock it out completely.
BACK HOMEAshley was released from the hospital on Friday evening. On the way home, we had to stop at Funcoland, a video game outlet, because Mammaw had promised her some new games for her Game Boy. We came home to a clean house with no dirty laundry or dirty dishes, and supper waiting on the table. Shelley, a good friend of ours, had borrowed a house key a couple of days earlier, and took care of all of that while we were at the hospital.
SUSAN BREAKS A LEGOn Tuesday evening, I had to take the teens from church to our weekly Summer Youth Series devotional. Susan had a softball game, so she asked Shelley (same one who cleaned our house and fixed us supper later in the week) to come up to the hospital and sit with Ashley while Susan went and played softball.
At about 9:45 that evening, while I was waiting for parents to come pick up their teens at the church building, the church phone rang. I answered it. It was one of our elders, who also operates the concession stand at the ball park. He said that Susan had hurt her foot. As soon as the last teen had been picked up, I raced out to the ball park. Susan was sitting on the bench, obviously in pain. She had slid into home plate in the last inning. Her foot got caught on something and twisted while she was sliding. The umpire called her "out", adding insult to injury (literally!).
I took Susan over to Melva's house (our friend who is a nurse) and had her look at Susan's foot before heading to the emergency room. Melva called ahead to let the ER know that we were coming. She then took a package of frozen broccoli out of her freezer for Susan to use as an ice pack (the sacrifices some people are willing to make for their friends!).
We got to the emergency room and they did an x-ray. The fibula of Susan's right leg was broken near the ankle. The fibula is the smaller, outer bone of the two bones that run from the knee down to the ankle. Thankfully, she did not break her tibia, which is the larger, weight-bearing bone of the lower leg. It was intact. The ER staff put a temporary half-cast on Susan's right lower leg, and told her to see an orthopedic specialist in a few days. We took Susan to the orthopedist on Thursday, and he replaced the temporary cast with a removable cast. He will see her again this week, and she will have to wear the cast for 6-9 weeks.
LOOKING TO BUY A HOUSESusan and I have been married for almost 15 years, and have never owned a house. We have always rented. The house we are living in now is too small. Ashley and Justin are sharing a bedroom. They are at the age where they each need their own room, especially with Ashley's situation. So we have been looking for a bigger place to live for some time now. There is absolutely NOTHING to rent here in Waxahachie, or else when something does come available that is big enough, it is way out of reach financially. So we are looking at the possibility of buying a house.
Some friends of ours have a house for sale that would be ideal, and would serve our family for many years to come. We have talked to the mortgage company to see if we would qualify, and if we could afford the house. I am supposed to call the mortgage company lady back this week to see what they have found out. I am hoping and praying that we will get good news.
I want my kids to have a house to grow up in that they can call "ours". I want to be able to plant trees for the kids and watch them grow (the trees and the kids). I want Ashley and Justin to be able to come back home after they are all grown up, and remember all the good times they had, growing up in "our" house. I have prayed fervently that God will allow us to buy this house, and now we are waiting to see what His answer will be.
NAUSEA GETTING BETTERAs I write this on Sunday afternoon, Ashley's nausea seems to be getting a little better. The doctors and nurses said that the nausea from the cisplatin could last up to 48 hours or so after the last treatment. Hopefully by tomorrow the nausea will be gone, at least for a while. Ashley's appetite is also gradually improving. We are still nowhere close to where we need to be in terms of her daily intake of nutrients and fluids, but we are slowly moving in that direction.
THANK YOUAs always, thank you for remembering Ashley and us in your thoughts and prayers. The next update will probably be in a couple of weeks. In the meantime, if you would like to see some pictures, I have posted some new ones of Ashley and Justin in the "O'Rear Family Photo Album".
God bless you!