Sunday, September 25, 2016
August 25th Update - Bad News, Good News
We got more bad news over the weekend. Elle had her 24-hour EEG and did really well (behavior-wise) while we were there. But the EEG confirmed what we thought was the case, that she is having hundreds and hundreds of little seizures every day. She is also having ones all night long, which we did not know and she has not had before. Too, the EEG confirmed that she is having atonic or drop seizures along with the absence and myoclonic ones.
Also, Milla's doctor thinks that her 'attacks,' that I described in my last update, are seizures...possibly grand mal seizures...they just look different because of her condition. I have had to give her rescue meds at least once a day for the last 12 out of 14 days or so. For reference, we haven't given rescue meds to Milla in months and months, maybe even a year. And when we last gave it, it was a super long time before that that she needed rescue meds.
So not much good there. We are adjusting meds for both of them and hoping that will help.
Another rough part to our week is that we had to put our dog, Maddy, to sleep earlier this week. She was 13 years old and had stopped eating last weekend. I took her into the vet Monday and they found a huge cantaloupe-size mass in her abdomen. We were pretty worried about how Ann Carlyle would handle the news, especially since she was at school when I took Maddy to the vet, but she's doing okay. We miss having Maddy around!
The big news is good news though! We will be taking Elle up to Columbus, OH next week to receive an experimental treatment. She will have surgery to place a brain shunt which the doctors will use to give her an infusion of the experimental medication. She will be up in Columbus for a couple of weeks to heal from the surgery and to get her first infusion. (After the surgery, Frazer and I will alternate being home with Ann Carlyle and Milla and being in Columbus with Elle.) Then she will come home, but we will have to take her back up there every other week to get another treatment. For each treatment, she will be in the hospital for at least 24 hours - more if she has any complications. This is a treatment, not a cure, so she will continue to get the treatment for the next foreseeable future. The clinical trial that has been studying this medication has had some good results so far (slowing or stopping the progression of the disease, regaining some lost skills), though the trial is not even 2 years along yet. Unfortunately, Milla is too far progressed in her disease to qualify for the medication.
We are beyond thankful that we are able to commute up to Columbus at this time and we don't have to move up there. Also, if, at some point, the medication is approved by the FDA and commercialized, we are hoping to be able to get the infusions locally or somewhere much closer to home than Columbus.
So please, please be in prayer for all this - so much to pray for.
Pray that Elle qualifies for this treatment. We technically still have a couple of steps to go through when we get up to Columbus next week, which are mostly formalities, but until the papers are signed, nothing is set in stone.
Pray for Ann Carlyle as she continues to go to school and have homework, etc that she has to keep up with while her parents are in-and-out of town for almost 3 weeks.
Pray for Milla - that she will bounce back with these medication changes and that she won't be confused or scared because of us being in-and-out. Pray that she will stay healthy.
Pray for all the family and friends that will be helping us care for Ann Carlyle and Milla while we are in Ohio.
Pray for my heart - I will be leaving one or more of my precious girls constantly for the next 3 weeks and that is really, really, really hard as it will be 6 days or so between the days Frazer and I switch places.
Pray for Frazer - for his heart as well and that he will be able to balance work with all this travel and caring for the girls.
Pray for us both because we will be apart from each other for so long...getting to see each other, at best, for a couple of hours when we switch cities. Super not-excited about that.
Pray for Elle - for health and her safety/no complications with her surgery and the medication. Pray for her time in Columbus, that it will be good and fun for her and helpful and that she will tolerate all the things that she will have to do/go through. Pray that she will be compliant and that she will sleep! Pray that she will be her happy, silly self! And pray that her seizures decrease and that her motor skills maintain.
Pray for all the doctors, nurses and other medical folks in Columbus that will be taking care of Elle/us. Pray that they will have wisdom and skill and understanding.
Pray for all the logistics to go smoothly. There will be A LOT of moving parts!
I could go on and on but I gotta go help Ann Carlyle with homework, make some dinner for the girls, feed them and in between all that, interview a possible new aide for the weekend nights. For the love.
I will try to update y'all as much as possible as we go through all this the next few weeks.
I can't tell you how much we appreciate (understatement) your love, prayers and help in all ways, big and small!!!!!
Let us strive to know the Lord. His appearance is as sure as the dawn. He will come to us like the rain, like spring showers that water the land. (Hosea 6:3)