Apr 23: Ride the Roller Coaster of A.L.L.

After a substantial discussion with my oncologist Tue afternoon, I've decided to put CAR-T on hold. We're going to monitor and see if and how fast the blasts increase. It is possible my body will mount a defense. There are a couple of other less intense options other than CAR-T, also that might be tried. 

Just not ready for a 2 week hospital stay and 60 days of 24/7 "house arrest," having to stay within 50 miles of the hospital and have a 24/7 caregiver. 

Whatever the medical level of involvement, from the start my hope has been in God and his good intention, whether through medical means or in spite of it. Waiting and seeing what happens now makes that a little more real for me. 

Many are the afflictions of the righteous, but the LORD delivers him out of them all.

Psalm 34:19 

I am righteous only through Jesus. He will deliver me, whether here on earth, or ultimately, eternally. 

Apr 18: Don't be your own Doc

 

Well....

Never be your own doctor or lawyer. I just heard from my oncologist. I misread the results and didn't actually have the more sensitive genetic test results. I still have some leukemia lurking around, 53 cells vs the 845K I had when I was first diagnosed Aug 2023. 

Bottom line, still in a battle, still in a fight. 

CAR-T is my next likely option where they use my own healthy cells to grow them and then target the bad ones. 

The Lord is my refuge and strength; a very present help in time of trouble.

Apr 17: Day 614 NED is my new best friend.

 Thank you, God. Your mercies are new every day. 

NED (No Evidence of Disease) is my new best friend. My Flow Cytometry results were good from my bone marrow biopsy.

I am grateful to God in heaven for these results. 

I'll be on a monthly monitor check of blood for a year, then we'll see what happens. 

God cares for the birds in the sky and the flowers on the ground, therefore, do not worry about tomorrow; trust in Him today for he will provide.

I hope your day and weekend are blessed,

G

Apr 11: The Big Needle

 aka Bone Marrow Biopsy

This one seemed to be more difficult and have more after-procedure pain. They use the top of the hip bone to collect the bone marrow and a piece of bone. I didn't pass out this time, but I did hear rushing water for a few moments after the second or third attempt to collect a sample. 

Results in 7-10 days. Accuracy down to 1/1M detection. 

Hopefully, all is clear, aka NED (No Detectible Disease) Then it'll be a monthly blood test to keep tabs on things for the next year. 

I am grateful and blessed.

Blessings to you and yours today,

Gary

Mar 23: The Gray Unknown

 The Gray Unkown

Seven and a half months post-transplant, I thought I was good on the leukemia front. I went from being physically good to here we go again. 

As my Blincyto treatment routine nears its end, the future is much more of a gray wall of unknown, like looking at a storm cloud bank. I have one more week of my 4 x 28 day infusion treatments broken up by 2 week breaks. After my infusion finishes next Thursday, I'll take a couple of week break, then they'll do a bone marrow biopsy to try to get a read on the front line of my bone marrow. My WBC counts are decent as are my overall blood counts. 

Blinatumomab Extends Life for People with ALL in Remission - NCI

I can't see beyond that gray wall, but God has given me the faith to trust Him that beyond that gray wall is an eternity of goodness, of living in the love and presence of Jesus. I might have to run the windshield wipers on high to get through that storm cloud, but there's sunshine on the other side. 

Revelation 21 

Then I saw a new heaven and a new earth, for the old heaven and the old earth had disappeared. And the sea was also gone. And I saw the holy city, the new Jerusalem, coming down from God out of heaven like a bride beautifully dressed for her husband.

heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

And the one sitting on the throne said, “Look, I am making everything new!” And then he said to me, “Write this down, for what I tell you is trustworthy and true.” And he also said, “It is finished! I am the Alpha and the Omega—the Beginning and the End. To all who are thirsty I will give freely from the springs of the water of life. All who are victorious will inherit all these blessings, and I will be their God, and they will be my children.

Do you know Him, the Alpha and the Omega. Do you trust Him? 

Feb 27 Grateful Check

 I have a lot to be grateful for. 

• 18 months since first diagnosed and doing fairly well. 
• No sign of blasts (cancer cells) and all my white blood cells are from my donor bone marrow. 
• Started what should be my last of 4, 28-day round of Blincyto treatment today. 
• Grateful for the medical minds God has empowered to create treatments like Blincyto and for a portable infusion pump that allows me to be at home, rather than in the hospital for 28 days.
• A faithful wife who has endured all this with patience & grace. 
• Friends who have prayed for me.
• A God who loves me (and you.

May God bless you all today in the Grace and Love of Jesus Christ.

Jan 13: Third round, 28 days

So the good news is my appendectomy is mostly healed up. Still on a weight restriction. 

Today is the start of round 3 of my 28-day cycle of Blyncito so my infusion buddy, aka pump, is hanging around with me for the next 28 days. I'll return weekly to get my pump recharged for another weekly dose till I hit the 28th day. Then I get a 2-week reprieve. Then the fourth round again The restart is longer because they kick it off with a dose of IV dexamethazone. 

Otherwise I'm feeling good. Body is working pretty good. Starting to take walks again for exercise. Grateful and blessed. 

May you be blessed by the grace of our Lord Jesus Christ.