We have just completed Cycle 5 out of 6 of treatment for immunotherapy. We are completely finished with our long hospital stays and we couldn't be happier. Over the last year, I counted that we have spent approximately 28 weeks in the hospital, so being home for more than 2 weeks at a time is amazing. Coltrane will have 2 weeks off and then startup his last 2 weeks of Accutane. After that, we will be officially done with the standard treatment for Neuroblastoma Stage IV. We have been seeking your prayers over the last few months about the possibility of doing further treatment in the form of a clinical trial of the drug DFMO (trust me, it is such a long name). Since, the relapse rate for Coltrane's diagnosis is high, we have been trying to research and pray about our next steps. We prayed for the Holy Spirit to guide us in our decision through the advice and recommendations of our oncologists. Today, we went to visit our primary oncologist in Tulsa and we were so happy to see that he had been doing his research as well. He recommended that we follow through with this trial as it didn't seem like the side effects were very toxic and the early results of the trial were very hopeful. It was such a relief to have a definitive answer and now we have some direction about our next steps. It is another 2 years of treatment (Boooo!) but at least it is just a pill twice a day. We will be getting scans every 3 months, and blood-work every month. We would have been doing those things anyway. The trial will involve further traveling since only certain hospitals are coordinating this trial. We have chosen to go to the Children's Hospital in Kansas City. We will probably begin this treatment in the late fall, early winter.
We have been constantly encouraged and inspired by our wonderful family in Christ. As we look over the last year, it is easy to see God's hand. God used you guys to send us encouragement in our darkest moments and to share in the praises of good news. Being on the other side of this mountain feels so good and knowing that Coltrane is getting better each day is a blessing. Praise the Lord, Oh My Soul! Praise the Lord when I hear my boys fighting, praise the Lord when I see that onery twinkle in Coltrane's eye again, praise the Lord when I hear the boys chattering in their beds at night, praise the Lord Coltrane will need a haircut soon, praise the Lord, Jackson and Coltrane can have dance parties together, praise the Lord that Coltrane is NED, praise the Lord.
We appreciate your prayers and are surprised and astonished that so many of you are STILL praying for us, it means the world to us and our journey is not yet over so please keep them coming. Please help pray for:
-Coltrane to gain some weight, his appetite will increase
-Clear scans at the end of treatment next month
-Details of the DFMO trial (getting enrolled, insurance blah blah blah)
-No side effects from treatment to haunt Coltrane further down the road
-Justin balancing school, work, and family time
We love you,
Sonja, Justin, Jackson, and Coltrane the Free
Love you all!! Thank you for sharing this joyous news and how we can be in continued prayer for you moving forward! Praise the LORD! :D King above all kings!
ReplyDeleteIt was so nice to able to be there when you heard the Dr. say that this was the direction you should take. I literally could see the relief in your face:) The nurses we saw yesterday were so glad to see you and they could not believe that this was the same little boy. He looks so good! We will continually pray for your family for all the things you need in the coming years. We love you!
ReplyDeletepraying with you for no relapse, for complete health from this point forward. Thanking God for the advances of medicine He has allowed and the men and women He has gifted with knowledge and compassionate for such a time as this.
ReplyDeleteContinuing in prayers with you for continued and permanent healing!
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