Research Research Research

Super Daddy and his Super Buddy

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.

Mmmmmm  Pizza
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.

12 thoughts on “Research Research Research

  1. My dear nephew……you have accepted humility and are not afraid to ask for help. That is important to your journey. Fortunately the kids are little and they are resiliant. They probably will not remember that they had to cut back on some things. Your love and attention is the most important thing to them right now and is also a healing tool for you.

    God raise you up on eagle’s wing and make you shine like the breath of dawn!
    May Jesus give you a drop of his blood in your veins to help fight the cancer. And may you always be the sweet person you are!

    Love and Hugs
    Aunt Liz

    Liked by 3 people

  2. Stay strong Rob! Jim was told about cactus and aloe water from another patient…when we asked the doctors they said he could not have either one until his counts were back to normal….which we are still waiting for “normal”…..maybe Jims new normal. I tasted both so they wouldnt just be wasted…..lets just say they are not yummy!

    Liked by 2 people

  3. Rob hi there,
    Looks like you have been doing a lot of research. Reading your letters I feel like Iam also learning with you. Love the picture of you with Tucker. I fell in love with him when he was just a baby. He gave me kisses all the time. That little guy and your girls are adorable. I will send you a gift card too. Didn’t know your address so I will ask your mom.. Going to get ready for bed now. Goodnight Rob. Gods peace will flow through you and get you back to remission..will talk tomm..🙏🏼

    Liked by 2 people

  4. Rob, you are so loved by all that you have encountered in your life. You are an inspiration to many. Hang in there, I know it feels like you are treading water for ever. There will come a time, in God’s time, where you will swim to the shore and do a big happy dance.

    Liked by 3 people

  5. Great update, Rob. It’s wonderful that you got to spend some “normal” time with your family…I know you all must cherish those moments! We continue to keep you all close at heart and are in awe of you handle each step of this journey.

    Liked by 2 people

  6. Before the internet?…the card catalog, outdated textbooks, and dry periodicals! Thank goodness for the information available today. Thank goodness you have the intelligence to understand what you are reading and to know the questions to ask. As for “cancer fighting foods”, it’s not difficult to think that God created everything we need, so why not foods or oils? I hope I speak for everyone that loves your family…..we don’t need a spread sheet of your financials. We don’t need graphs of your family budgets. Gifts are yours. You are trusted to use the gifts as you see fit. We put Grace into gymnastics when Charles got sick….to give her something of her own. You are loved. God sees you and loves you. Prayers for you and Lindsey and the kids. Always.

    Liked by 2 people

  7. I was not expecting an update until Monday, so I am so grateful for all you wrote for me to read today. Your thoughts are so clearly honest and well thought, and we all feel that we are sitting next to you in conversation. I too have practiced the drug name, spelled it over and over again, and at night before I go to bed, I practice saying the weird word. I will be anxious to hear what Dr. Cripe advises and discerns on Monday. In the meantime, continue to enjoy your family this weekend; the weather is so nice, the sun is shining, and God is good. I just know through God’s messages to me that you will come through this battle and succeed. Patience is so difficult, and yet it is one of God’s most important requests. I think that is why your blog is “Thank you for another day;” one day at a time. I love you all so much! Mom

    Liked by 4 people

  8. Rob,
    Thank you for your honesty and that you continue to show your dependence and trust in Jesus. With so many followers and the avenues of social media, the platform you have is so vast, I am confident that you are being used in a very important way that we may never know here on earth. It has been amazing for me as your sister to read your updates and to know the eternal impact you may have.
    Love you!
    P.s. There is a care package on its way to your house- supposed to arrive Monday.

    Liked by 2 people

  9. Rob and family. I worked with Jane at the Robinson Bank. I read your words and it makes me want to pray harder for you. You should realize that those people who send gift cards and money know you will use it for the things it’s needed for and would never question how you use it. Whatever it takes to help your family cope with what you all are going through, that’s what it is for. I believe in the power of prayer and I know there is an abundance of prayers lifted up for you daily. Ride that wave and feel its power.
    Lord God, this man is a wonderful example of your goodness. Please shower your mercy upon him and his family and lay your hands of healing on him. In Jesus name I pray. Amen

    Liked by 3 people

  10. I have heard of the Car T therapy! They did a video on YouTube explaining it. The therapy I saw was a modified t-cell and it basically made the tumors explode and the cell looked like a super hero! It was from CHOP. Please repost your go fundme site!! I know that we all want to help! Lots of prayers heading your way!

    Liked by 1 person

  11. Rob,
    Thank you for sharing your story with us. My heart breaks to know that you are struggling to not only get better but to keep some normalcy while you try to digest all that is being thrown at you. Your spirit, sense of gumor, honesty and faith are SO uplifting. It is ok to not always feel strong and to question (we all do), but knowing you are always looking up for strength is an amazing testament.

    Praying for God’s will for your healing and for your family.

    Liked by 1 person

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