What Did People Do Before the Internet?
I’ve spent a lot of today online researching relapsed and refractory ALL. Of course I’ve been looking into Blinatumomab. I’ve also been looking into CAR T therapy. CAR T Therapy is where they take out some of your own T cells, modify them and then put them back in you to fight the cancer. I’ll have a lot of questions for Dr. Cripe on Blinatumomab vs CAR T.
I’m still not sure I’m always spelling that right. Last night I was on my iPhone in bed and couldn’t remember the name of the drug. I ended up researching ibritumomab for a bit before I realized the error of my ways. From what I’ve found out today, Blinatumomab is given via constant IV. I mistakenly thought that I would get a dose for a few hours and then be unhooked like I was with Chemo. This drug is given 24/7 for 28 days. That should make for some interesting adjustments in life. Looking at the side effects, I will most likely experience flu like symptoms (Fever, Headache, Nausea). Hopefully those can be managed well with medications. From what I’ve read the phase 2 clinical trials achieved a remission in 40% of patients.
CAR T has not been approved (at least as far as I can tell) by the FDA. However it has been given a breakthrough therapy designation. CAR T trials are underway in Philadelphia (where I hear they give great haircuts), New York, Texas and other places. The problem with CAR T therapy is that it is not available at IU Health. I would need to travel and be treated away from home. Potentially for quite some time. I have no idea how that would work. How long I’d be gone. When Lindsey could be there. How we would afford it. Or any of that. I’ll trust God for those things if it’s needed. However, CAR T has achieved 80% remission in pediatric and adult patients. I know from following another ALL patient that it doesn’t always work, but 80% isn’t too shabby.
The reality is that relapsed ALL does not have the best prognosis. Blinatumomab and CAR T are two breakthrough treatments that are drastically improving outcomes. Prior to these treatments some studies had the 5 year survival of relapsed ALL at 5%-10%. As I’ve read these studies I’ve seen the phrases “dismal prognosis” or “poor prognosis” many times. But these 2 new therapies give hope to people like me. There is still a long road ahead of us. There are many people before us with success stories. The cry of my heart is to be one of those success stories. That doesn’t mean it will happen, but that is the path I am walking as well as I can.
Cancer Fighting Foods
One of the other things I’ve been looking into is foods that help fight cancer. It’s probably something I should have done more thoroughly before. However, when I have looked into it, it gets quite confusing. Some people have success. Others don’t. Some people do well and then I’ll read about risks or how complications occurred. Today we bought some Aloe Water and Cactus Water. I haven’t tried either, but I’m interested to see how they taste. If you have any experience with specific foods, let me know via a Facebook message or comment.
It might be a little odd to follow up a segment on cancer fighting foods with talk of Pizza, but today was pizza day. Lindsey, the kids and I went to Chicago Pizza for their lunch buffet. It’s one of our fav pizza places and a place the kids love. It was good to get some family time and feel normal for a bit. To get up and get pizza and drinks for the kids and then to laugh as they did silly things. We rarely go out to eat anymore, but it’s good to get out every now and then.
To finish out my pizza day, we had Papa Murphy’s for dinner at Grandma Jane’s. I didn’t eat quite as much as I did at the buffet. On the plus side, the pizza had mushrooms which do have some anti cancer properties.
As we receive support from others, I think it is important to be transparent. I know everyone has been giving with no strings attached, but I still want to be above reproach. My short term disability was approved and I have been receiving a partial income. I also had donated PTO from work that has provided income as well. We are living on a reduced budget (see below) so some of the PTO income is going into savings for future expenses. Lindsey will be going part time towards the end of August to help fill in the financial gaps and carry insurance for her and the kids. My long term disability has been submitted, but I do not know if that has been approved. That is a big prayer request, as the short term disability runs out after 13 weeks. I am eligible for Social Security Disability, but those payments are significantly less that what my long term disability would be.
We’ve cut out all non essential spending (vacations, retirement, 529’s, etc). We’re also finding ways to spend more wisely on essential items. Overall, we’ve trimmed our budget around 33% and I’m still tweaking things. I have an excel spreadsheet to track expected disability payments and expenses. We will need to dip into savings, but overall we are doing ok.
So How Have We Used Your Generous Gifts
How we use gift cards is easy to report. If you give us a card for Panera, we eat some Panera on days where things have gotten away from us and we don’t have a meal plan. If you gave us a gift card for Chick Fil A, Lindsey has probably taken then kids to play and get a little down time. Amazon cards go for Amazon. Meijer cards go for Meijer and Sybaris cards go for Sybaris.
Monetary gifts are going to 2 different areas. First, they are going to help cover our Out of Pocket medical expenses. Those are capped at $6,000 this year because of my insurance. Unfortunately it looks like I’ll also reach my OOP next year. Not sure what that will be yet, but we are applying money to this year’s OOP so far. The other important use of the money is to keep things somewhat normal for the kids. Your gifts have allowed us to keep Natalie in gymnastics, which she loves. That could have very easily been a non-essential item but we want to try and minimize the impact on the kids. I’ve also put some of the money away to pay for the girls pre-school. I’m so thankful for every financial gift, gift card, get well card, etc that we have received. I’m doing my best to use your gifts wisely and where they are most needed.
A Duck Dynasty Prayer
God, I’m wearing out a bit. There is a lot of information to digest. A lot of important choices to be made. A lot of prayers to lift up. I trust in you Lord God. I cry out for remission, but my cries also recognize your will be done. I have crazy kids and I know the stress of constant needs is building. However my time with them is so very important. Give us peace and patience. Give the kids understanding and help them to listen. Thank you for all the help we have received and please provide for all the help we will need. Please grant wisdom to me, Lindsey, Dr. Cripe and my medical team. Let us chart the best path forward. Guide our decisions and let your hand of healing rest on me. Please be with Lindsey as she juggles the stress of my disease, work, and kids. Give me strength and energy to help her in the ways she needs. Thank you God that I am ambulatory and able to take care of things. I pray that continues and that I have the energy to be up and about the house. Father God, please help me along the way. I thank you for another day.