Due to getting COVID, Grace's transplant date has been re-scheduled and we are currently scheduled to start the prepatory chemo (much stronger than the previous chemo she has received) on January 30th and then the bone marrow transplant a week later.
We expect to be in the hospital for at least a month and then staying near the hospital in an apartment for a month or two.
Jon's work and insurance has been really great. He has been told "work is optional" and to not stress about working, but just get done what he can. Insurance is expected to cover just about everything, including the hotel and apartments in Boston. There are also some other state-based insurance programs for people with severe disabilities and we are in the process of applying for those. There are also a lot of non-profit organizations who exist to support the families of those children with leukemia. There are fun blankets, special snap clothes that allow good access for medical procedures and stuffed animals to make for more cheery hospital visits.
Posted by
Heather Daley on
January 8, 2024, 2:51 pm
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Little Grace continues to be in my prayers so often. I am glad we can keep up with her journey this way. Thrilled your insurance and job have both been great. God's blessing in the midst of the Very Hard.
Grace and you all are in our prayers and will continue to be!
Pami and Tony Gregorio
When praying for Grace & her loving family my emotional level increases with each thought that you all are going through. Now after reading this posting of what has been going on, my emotions are reaching levels of uncontrollable sorrow. Then my prayers to God, who is control of all things, concentrate on asking God for the wisdom, grace, mercy & love that He provides for His children.
Jon, Heather & your family are being blessed by God through your family & friends showing all of His attributes. Please do not lose sight of this, He will carry you through this journey and both all of you and He will be blessed.
Paul a servant of Christ
Oh Heather and Jon...what a journey. I think of you all everyday and you are in my prayers. Thank you for educating us about these travails. You are an inspiration and doing a very good thing sharing this information. Love to all of you...