I have a friend here in Omaha who looks like me. So much so that both of our mothers have mistaken us for the other one! Jerry is a veterinarian. Of course, this can be embarrassing and awkward for friends of ours after an exchange like this: “Hey! How’d the surgery turn out?” “Great! She had four healthy puppies!” “Wait. Are you Allen George?” “No. I’m Jerry.” Even my sister confused us on New Year’s Eve. Can you tell us apart? We’ll start with a hard one
Yesterday, Amy had a visit with her neurologist. You're probably asking, "Why are there so many doctors? How many more do you have to see?" Well, this is the last one. His job is to manage Amy's seizures, which thankfully, she hasn't had any more of since the surgery. We were happy that he suggested that after we get back to Peru and settled that Amy could try weaning off of Keppra, since the part of the brain that was causing the seizures was removed in her last surgery. So, that is a very positive thing. Amy's headaches have recently taken a turn for the better, though she still has yet to go a day without taking some tylenol, but yesterday was close! Thanks for praying.
At the moment we are busy getting all of our ducks in a row before returning to Peru: Transcripts for school, fees for Interpol, changing addresses with banks, background checks (every 3 years) for SIM, etc. It will be a busy 2 weeks, but we like to be busy!
Today we received many affirming emails from the various SIM personnel leaders approving of our return to Peru. I also met with Craig Walter, the missions pastor from Christ Community Church this morning, who said that he supported our return if SIM approved of it. So with those green lights we have purchased tickets to return to Peru! We will be leaving Omaha on January 20th, stopping in Honolulu to visit Amy's sister's family on the way. Her sister is a pediatrician in the army stationed in Honolulu. Except for one particularly notable date in history, Honolulu is probably a nice place to be stationed!
Happy New Year!
This morning we went to the neurosurgeon's office. We were there 90 minutes early because the appointment time had been changed twice but I (Allen) never heard about the changes! At least we weren't late. The neurosurgeon's assistant saw us. She thought Amy's wound looked good. We told her that we hoped to return to Peru soon and she said that we should get follow-up MRIs in Peru and send them to the office.
After lots of prayers and talking to people, Amy has decided to forego chemotherapy or radiation treatment and return to Peru soon. Neither would be curative, and as Christians looking forward to heaven, pursuing treatment here to possibly extend life by a few months, with all the risks and side-effects, seems foolish.
So, if we get approval from our church and SIM, we hope to return to Peru at the end of January. It doesn't seem sensible to just sit around Omaha waiting and worrying about a recurrence that hopefully will never happen (she wasn't supposed to live past 2007 before) so we are deciding to minister as much as we can with the time we have.
We told the kids our plans at supper (contingent upon approval, which we expect to get) and there were cheers and smiles all around.
Yesterday, Amy had an appointment with the neuro-oncologist (brain-cancer doctor). Like the radiation oncologist, the neuro-oncologist recommended that Amy repeat the radiation and Temodar chemotherapy , which is the same treatment that she had in 2004. Studies show that it adds 3 months to the life expectancy of the average patient with her type of cancer, but doesn't change the long-term prognosis markedly. This is pretty much what we expected to hear, but we wanted to meet with her for one more opinion.
We asked her thoughts on alternative treatments as well. She said that cannabis oil (we'd have to go to Colorado or Oregon to get it!) has shown enough merit that they are doing studies on it, but so far there isn't any scientific evidence that it is effective, nor for the many other treatments recommended by well-meaning friends.
So we now have to make a decision: Does Amy get the radiation and chemotherapy, with the risks and discomfort involved, hoping that it will prolong her life and prevent a return of her brain tumor, but making a long-term return to Peru difficult, or not do any treatment beyond prayer (which also goes with the first treatment plan!) and hope that the surgery she had two weeks ago will give her many more years of good life? Please pray for our decision.
Probably the most positive result of Amy's surgery has been her cessation of seizures. She had been having seizures about every 2 or 3 days and now she hasn't had one since her surgery! Praise God for that! So we asked her neurologist's nurse when he recommends tapering off seizure medicine after surgery. The nurse said, "Oh, usually after 2 years!" Bummer. We were hoping for sooner. I checked the literature and see that 2 years is a pretty common time-frame for post-surgical cessation of seizure meds, so I'm less hopeful that we can stop the medicines, but still thankful to see the seizures stopped for the moment.
Amy walked 16 miles last week for those who keep track of that sort of thing!
This morning, Amy had an appointment with the radiation oncologist. They were very thorough and spent a lot of time making sure that our questions were answered. We were encouraged when they pointed out that her prognosis is better than most because she is young and healthy and her tumor is positive for the IHD1 mutation, which have all been shown to improve the prognosis. However, they couldn't answer definitively the question we all want to know, "How much would radiation extend Amy's life?" No one can predict, of course. Radiation could make things worse. It could help. They, of course, recommend that she get radiation treatment, since that is the standard of care for glioblastoma, but they weren't dogmatic about it. (When all you have is a hammer, the whole world looks like a nail.)
Next Wednesday, she has an appointment with the neuro-oncologist. We will see what chemotherapy they recommend and make a decision from there. Unfortunately, neither treatment (radiation or chemotherapy) is very effective, and both tend to make one feel bad and there is risk of more brain damage.
We have been in a similar situation before, in 2004, when Amy had a tumor recurrence after being treated with radiation and chemotherapy. At that time, we knew that God had called us to Peru, and we did not think He was calling us to something different, so we went back and God graciously gave us 11 cancer-free years there! Please pray for us as we make tough decisions.
This morning we went to the gym and Amy walked 3 miles! I'm not very good at selfies (I think this is the 2nd one I've done). She feels a bit unsteady and veers a bit to the left, but really doesn't need me to be there to hold her hand, but we feel better having someone with her for now. Still no seizures, so that is a big plus! Her pain from her incision is slowly improving.
Amy opted to stay home from church today. She felt like she physically could have gone, but she wasn't ready for all of the attention. I guess having everyone say, "You're looking great!" is annoying to her. I've gotten used to it. (insert smiley) She is a bit ataxic (her gait is a bit unsteady) so she doesn't do stairs unless someone is around to walk below her, so we got everything she needed on first floor and the rest of us went to church and she watched it online (http://cccomaha.churchonline.org) from home. She's napping now. She's been sleeping a lot. Healing brains need their rest.
I was able to pick up Amy and bring her home around noon. She has a bunch of medicines to take for the next week and an appointment with the neuro-oncologist on the 23rd to see if there is anything that they would suggest as treatment. Dr. Puccioni came by this morning and said that the post-surgery MRI showed that they were very successful removing the tumor without leaving any large remnants. Hopefully, without leaving small remnants either, but it is hard to get all of the tumor in brain surgery because they have little tendrils that can go off in different directions and are hard to get.
They spared enough hair that she's even able to mostly cover up the surgical site with her other hair without it looking like a comb-over. She's resting now, glad to be home without beeping machines monitoring her!