Some things are difficult to convey in words, but I’m going to try to describe how big yesterday was for Maggie and the rest of our family.
Some background first: over the past 9 months, Maggie’s physical health has been in a slow, but steady, decline. Food was making her nauseous again and, consequently, she wasn’t eating well. This is typical of temporal lobe problems. Since December ’08, she’d lost 12 – 15 pounds, and she didn’t have it to lose. Maggie’s weight loss finally got the attention of her doctor several months ago and ordered last weeks hospital stay.
Well, in between that last doctor appointment and last week’s hospital stay, Maggie had a follow-up with her oncologist. Her weight loss caught his attention too. Hoping to just help Maggie until she could get admitted for testing, he prescribed an appetite stimulant that is common for oncology patients, which I’ll call “X”. I can’t get into the specifics of the “X”, but needless to say, it worked in some extra-ordinary ways. Within several weeks she gained four pounds.
What no one expected, though, was how much “X” helped her brain, nerves, anxiety, and struggles with over stimulation. Suddenly, she could communicate more clearly, interact, process, solve problems. She had a natural glean in her eyes that we hadn’t seen in years. Her teachers, speech therapists, physical therapist, etc all remarked that they had not seen this side of Maggie in a very long time, if ever. Things the speech therapist had been working for years on with Maggie were suddenly clicking. “X” does not normally have this effect on patients. However, it had a rare positive paradoxical effect for Maggie. Whereas Maggie usually experiences the worst rarest side effects in most of her medications, she experienced the rarest best side effect in this medication. She stayed on this medication up until last weeks hospital visit.
Jump to last weeks hospital stay: two positive things came out of last weeks hospital stay. 1) We learned that Maggie’s seizures are largely under control. 2) the anxiety, nerve pain, and over stimulation she suffers with are common problems with people who have had temporal lobectomy’s. The biggest struggle for temporal lobectomy patients is treating the anxiety and nerve pain, which is usually done with anti-depressants. Her doctors were quite amazed at the positive effect “X” had one Maggie, but were very concerned about the long term effects and other risk factors. In no uncertain terms, they wanted her off of “X” and wanted to begin experimenting with other drugs. They didn’t even want to talk about putting her back on “X”. We had finally found a drug that was doing more for Maggie than anything else done over the past several years and they wanted to yank it and begin experimenting. We would have to go up to Denver every week to meet with the doctor, let them examine Maggie for side effects, tweak the drug or try a new one.
We knew where this was going and knew that the next year was going to be quite the trial for Maggie – a roller coaster of emotions, rashes, not feeling herself, etc. She came home from the hospital on one of them, and was clearly not herself. Her speech therapist remarked to Kathi this was like watching Maggie deteriorate all over again. After a few days of that nonsense and consulting with some other doctors, I decided to put her back on “X”. Within 4 – 6 hours, she started feeling much better. By Sunday, We had Maggie back.
Our first followup was yesterday and we knew the doctors would not be happy that we put her back on “X”. In fact, they had already decided what new drug to begin Maggie on, and for all they knew, this meeting was about starting her on that. However, over the weekend, Kathi and I had decided to pursue a different route, and again, after consulting with some other doctors, decided that the benefits of taking “X” far outweighed the risks and improved Maggie’s quality of life better than anything that had been done before. We went in to yesterday’s meeting wanting them to keep her on “X”, and we knew the odds of that happening were greatly stacked against her.
The first 3/4′s of the meeting went as we expected – they listened to us, but were clearly not budging. They had their protocol all layed out and it wasn’t matching up with what we wanted to discuss. Then, something happened. The head doctor’s mind suddenly changed. He said “Well, $%!#, if its’ working, let’s keep her on it for at least the next 3 months and watch her closely. I don’t understand how this is helping Maggie, but clearly she is benefiting in a way we don’t yet understand. If you’ll bring her in for a consult every month, then I think this will be ok. I still want to consider switching to something else down the road, but let’s take this time to learn more about Maggie and give her this stability.” Like that, his mind was changed and Maggie was saved, at least for now, from a roller coaster year of emotional and physical experimentations. God’s promise of protection was over that meeting and we saw it play out before out eyes.
All of this may sound like a minor thing – a medication issue. However, this was a huge win for Maggie, and for us as a family. As Kathi and I were discussing this morning, we can’t remember a victory like this since her doctor decided to remove the tumor six years ago. We were battling for Maggie’s quality of life, her day to day, and God protected her.
God is always working in all situations, but sometimes He allows you to watch Him turn the head of a king mid-meeting, and then gives you an unexpected gift. That is what happened yesterday, and “thankful” doesn’t even come close to describing our hearts. Our pastor’s sermon this past Sunday on Abraham and Abimilech and the outcome of yesterday’s meeting are not coincidental. We watched Mark’s sermon play out and it was beautiful thing to behold. Praise be to God.
From this morning’s Spurgeon’s Morning and Evening devotional:
Isaiah 51:5 “On mine arm shall they trust”
When he is burdened with troubles so pressing and so peculiar, that he cannot tell them to any but his God, he may be thankful for them; for he will learn more of his Lord then than at any other time.
It is overwhelming to think of the beautiful patchwork quilt God is weaving together. Shades of grey intermixed with green flowers, red and white stripes, blue paisleys, houndstooth, and old antique cars. Threads of hurt holding together patches of loneliness, grief, celebration, worry, and hope.
It’ll be a beautiful thing to see God wrapped in what He has Sovereignly woven together.
This has been a very productive hospital stay for Maggie. We’re coming home with some more medicine changes and a lot more information that helps us help Maggie with the numerous stimulation struggles she has, which leads to other snowballing problems. It all ties back to her temporal lobe, previous surgeries, and the location of nasty old tumor.
Thank you for praying for us and Maggie.
Maggie was admitted to Children’s Hospital today to undergo more testing, per the doctors request. She is completely off her meds, as well as her vagal nerve stimulator. When I left this afternoon, Maggie had had one episode already. However, they need to be clearly defined on the testing equipment to be of help, and that has always been a problem.
Please pray that her seizures are clear and definite on the monitoring equipment, and that she doesn’t have to have too many of them to give the doctors what they need.
I’ve been thinking a lot about Jim Elliot’s quote: “Wherever you are, be all there” and its’ impact on my day to day. When thinking of Christ, I think He lived that. When worshiping, worship. When lying down, rest. When with others, listen. When playing, play. When working, work. Giving my mind, heart, ears, and soul to whatever and wherever I am at that moment.
It means changing the ringer from vibrate to silent.
During our vacation, we got a call from Denver Children’s Hospital that they want to admit Maggie for monitoring and testing on August 24. She’ll likely be in the hospital for about three days. We began weaning Maggie from her medications last night.
All the kids start back to school on Monday and begin taking classes at Collegium Study Center, too.
Here are some pictures from our vacation in Breckenridge: