Support Registry Update

I'll be home for Christmas

In support of
Glen
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Hi all, 

I write with excitement and as always, a touch of anxiety. Our time in Philadelphia is quickly coming to an end, and we are excited to return home early next week to be able to enjoy Christmas with friends and family. 

Glen has handled everything this past month with a strength and resilience that is beyond me. During our stay here, we have only been inpatient for the required week after he received the CART cells, which after talking more with his medical team is quite uncommon. As his body accepts the cells and they expand in his immune system, it is extremely common for patients to be readmitted, or to even stay inpatient for the majority of their time here. We have seen fluctuations in his body's response to these cells, which his team assures us means that the treatment is doing what it needs to do. The caveat of this is that we will not know for sure if this treatment has worked until we get the results of his next bone marrow biopsy, which is scheduled for Monday. We hope to know something before Christmas. 

Once we get his results back we will be on one of two paths; managing his condition, or bone marrow transplant. The first possible path, is the one I pray it does not come to- if this treatment is not successful and we must manage his leukemia. As Glen's cancer has proven to be resistant to available chemotherapies and immunotherapies, we would be reusing treatments, possibly in different combinations to see if we could make any more progress, or to wait until another treatment comes available. This is an option that keeps me up at night, and I hope with all that is in me it does not come to this, but as I have faced the disappointment of treatments not being successful with each of his 7 rounds of chemo, and bone marrow checks, I have learned I have to level my expectations, remaining hopeful, but realistic as I have had to make difficult decisions regarding his treatment quickly after getting these results. The second path, and of course the one that we all want to see come to fruition is moving forward with the bone marrow transplant (BMT) . Although I have to keep a plan B in the back of my head for the sake of my own mental health and sanity, I am planning for us to move forward with the BMT. We will have a couple of weeks at home, and then on January 8, Glen will be admitted to Levine's for radiation and chemotherapy to prepare his body for the transplant. He will be inpatient for a week before they harvest the bone marrow from me, and he will receive it that same morning. We anticipate that we will be inpatient for a month or two for this, but are thankful that it will be back home where we have our wonderful support system. 

With love and Christmas hope, 
Glen's mom (Anna)
(chatGPT was NOT USED FOR THIS POST YALL)

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Comments

Carol Cox

Prayers continue for Glen and all family. God is Good and is in this. 🙏💜
  • 3 months ago

Renee Keese

We are happy you are returning home and pray for the BMT treatment. Looking forward to seeing everyone over Christmas!❤️🎄
  • 3 months ago

Diana North

God bless you all. Treasure this Christmas season with your little guy.
  • 3 months ago

Katrina Newberry

Continued prayers for all. We hope to be able to squeeze in a visit when Glen is home.Alex misses his friend.
  • 3 months ago

Cassie Craig

Hi Anna, I have been praying for Glenn every day. I will be praying now for the BMT option. God bless.
  • 3 months ago

Heather Bauer

We continue to hope and pray for the best possible outcome. Glad you will be home for Christmas…Merry Christmas from our family!!
  • 3 months ago

Tacy Fleury

Continuing to pray!!
  • 3 months ago

Ellen MacCormack

Continuing to pray for your sweet little boy.
  • 3 months ago

Cindy Hughes

So hard! Praying mightily for Glen ( and you)❤️❤️❤️
  • 3 months ago

Lynn Downie

Trevor and I are praying for you and Glen!
  • 3 months ago

LeNell Rabon

Praying for this child and family.
  • 3 months ago

Fonda Rist

We have been praying for Glen. What a trooper he is and the way you bravely take each progressive step is awesome.
  • 2 months ago