Please forgive me my long absence here in the blog. I know its a good way to "lose readers," but I'm still planning on updating this regularly so that we don't lose prayer. Whether you are a part of our church family - Faith Bible Church in The Woodlands, TX - or not, I hope walking in this journey with us through blog posts has encouraged your heart for prayer, intercession, desperation and even worship. I hope it has allowed you to feel connected to God and to others as you join in the great choir of people praying for Liza's health and healing. I've said it before and I mean it: we cannot thank you enough.
The past few days have seen some interesting movement on the "what's next" front. We've been back in Texas 12 days now and Liza has already been to see her PCP once and had two ketamine infusions. But she's not left the house otherwise.
On Monday afternoon, I took Liza in for her second ketamine infusion since we've been back. While our friend Leslie was getting the IV sorted (it thankfully only took one stick again - she's a pro), I made and remade some phone calls. The first call was to a Neurosurgeon in Boston associated with Harvard University. This connection was brokered by a local doctor that saw Liza many years ago and who has now become a friend. I started calling Boston last week Monday, left two messages last week. I called again this Monday from the infusion clinic.
My next call was to a clinic in Dallas, Texas, to a specialist on neural cysts (Tarlov cysts). I left a message. My third call was to Memorial Hermann Hospital downtown to try to get back in to see our local neurologist for a follow up and consult. I left a message with Tanya through the messaging service. My fourth call was also to Memorial Hermann to try to get a follow up with Dr. Dong Kim, Liza's third neurosurgeon here in Houston. Again for a follow up and consult. I left another message with Tanya.
Meanwhile, for several days last week I've been compiling as concise of a medical history for Liza as I can muster. I've been arranging test results and scan reports and timelines and medications. Sonja, Liza's mum, has taken the long and hard task of making scan disk copies and organizing them. She's been doing that for several weeks and we are so very grateful. My plan is to engage Boston and Dallas and arrange to send these packets of history and disks if the doctors there are willing to review Liza's case. Then we could connect virtually or over the phone and hear their initial thoughts.
By the time the infusion was complete on Monday and I got Liza safely to bed for a short sleep, Boston had called me back. I called them back and left a message. Then they called again and I caught it. The woman I spoke to there, Shayna, was delightful and helpful. She listened as I gave her the 20 second recap and then she connected me to a registration process and an address to send the disks and history. Progress.
On Tuesday I went up to our church campus for several meetings and a long lunch. It was good to be with friends and staff again. Tuesday afternoon, the clinic in Dallas called me back and I caught the call. The woman I spoke with there, Jennifer, was also very helpful. She jumped right to "procedure" though. I slowed things down with a short recap and a simple request for a consultation and if the doctor there, the cyst specialist, would be willing to review Liza's case. She too directed me to a registration process, a way to upload files, a place to send stuff, and an option for a phone conversation/consultation. More progress.
Meanwhile, in the daily rhythm around our house, I think much of the anxiety about the medicine schedule has been lessened. We've got a tight schedule - certain things or something every three hours - and an alert system to ensure we don't miss it. There have been a few significant hiccups though. One night the alert system was faulty and Liza went for a long stretch in a semi-deep sleep but no meds, which means she awoke to incredible pain - again, continuing evidence that the underlying problem is still there, raging.
The protein-fruit-veggie shakes still continue and I think the taste is slightly improving. At first I was adding another prescribed supplement that had some form of wheat, barley and oats in it that was giving Liza some very sharp stomach pains. Her gluten and wheat sensitivity is sharp and quick. We had to discontinue that supplement and have exchanged it for raw spinach, etc. Her appetite is still not normal but I'm proud of her for enduring me shoving shakes in her face multiple times a day. More progress.
Liza has busied herself - as she lies in bed - handwriting dozens of thank you notes, reconnecting with friends online with things that give her a sense of purpose and offer opportunities to bless others (which is incredibly important for a social gift-giver who is largely bed-bound), and re-engaging the kids schooling. Liza has homeschooled our kids for the past many years and has done an incredible job. She continues that still, setting up our kids for their work before we left for California. COVID and an extended stay there disrupted the plan a bit but she is helping them get back on track now. They are doing very well and we are both so proud of them. They are warriors too, my kids. They have endured and persevered just as much as anyone during this time. It's hard for them see their mom suffer.
So, this Friday Liza will go into a local hospital to have her PICC line inserted in her bicep. She was able to connect with someone there and inform them of her need to lie flat and the helpful person on the other end adjusted Liza's arrival schedule and arranged for a bed. A great gift. Especially accepting the fact that I am not allowed to be with her or even accompany her in. She will be under their care for a few hours at least.
The PICC line is primarily for a stem cell/exome infusion which hopefully will happen soon with Liza's PCP. This is a local solution that has other avenues for further exploration later. Our hope is that it provides powerful, general healing to Liza's body, including her brain. We're praying that is made available next week.
So, one of my many jobs today is to finish the history and scan packets and get them in the mail to Boston and Dallas, after I finish the registration process for both places. I also have a few meetings today otherwise, including one to discuss our medical insurance - which has been exceptionally good to date.
Meanwhile, church ministry continues... homeschooling continues... and Liza's studio and dancers are preparing for a fundraising dance event in November in which Izzy, our daughter, is highly involved.
Some specific prayer requests:
Liza's nutrition and general body healing
For the PICC line appointment on Friday
For the stem cell infusion to be scheduled soon and go well
For Liza's general pain and anxiety
For clear next steps and options with the five avenues we are currently chasing
For our kids - Andrew and Isabel
Bless you dear friends.