Day 55, A Better Understanding

We went for another CT Scan today at CCMC.  After the CT Scan we went up to the 5th Floor to the Cancer and Blood Disorders Department to meet with Dr. Gillan, our Oncologist.  After chatting with her a bit, Dr. Martin joined us to discuss the CT Scan.  There is still some fluid build-up in Amber’s head but instead of it being in the main part of her brain, it has moved out and down towards her right cheek bone and temple area.  For now, we are going to watch and make sure that the swelling doesn’t get bigger and make sure it stays soft, otherwise we may try steroids or a stint for drainage.  Nothing too troubling, just something to watch.

We discussed a few questions that we had regarding upcoming treatments.  The plan for now is that we will do radiation for 6 weeks.  4-6 weeks after that we will do an MRI to see if there are any new tumors.  If all stays the same then we will continue to get MRI’s every few months.  If those results stay the same and there is no new tumor growth than we continue with MRI’s every 6 months until we get to 5 years with no change and then she will be in remission.  That would be the perfect scenario, and we pray for this kind of result.  However, we know the chances of that are quite small, so we are prepared for additional treatments, and potential clinical trials – we discussed today a promising Oncolytic Virus Therapy which uses the Polio Vaccine, being trialed at the University of Alabama.  We will follow Dr. Gillan’s lead on this (as hard as it is to trust someone else with Amber’s well-being, we have developed a deep trust in the doctors at CCMC – though we will also do our homework too, of course).

On our way out of the hospital we ran into Carina the therapy doggy that snuggled in bed with Amber a few weeks back!  It was a nice way to wrap up our visit at CCMC today.  But the day wasn’t quite done yet – we had one more stop to visit our pediatrician.

So, after a brief stop for some McD’s, we went to go see Dr. Gellar at the Norwich Pediatric Group in the Colchester branch.  We are quite blessed to be surrounded by good doctors who are also good human beings.  Dr. Gellar talked with us for quite a while, asking about Matt and me too, making sure we had everything we needed.  And, he helped us close one remaining open issue for us – it’s been tough to find pediatric physical and occupational therapy around the Norwich area.  Dr. Gellar checked with the team in the office, who indicated that Lawrence & Memorial Hospital would be the right place to go.  This agrees with what we were hearing from others, so we’re going to go in that direction.

So, a good day.  Some better understanding of where we are going, what we are hoping for, what the options are.  Tomorrow with meet with the radiation team at Backus Hospital, and kick this into high gear.  We pray for rapid, complete treatment, and also the strength to accept whatever outcomes we are delivered.  And again, we thank God for every day He has given us here, and for connecting us to the people that will help give Amber the best chances through this.

6 thoughts on “Day 55, A Better Understanding

  1. What a great team Amber has! A meticulous treatment plan, a wonderful family, so much love and goodwill sent her way, and her own determination and spirit are the exact formula needed to kick cancer’s (stinkin’) butt!
    Stay strong and push forward!!! So happy to hear how Amber is doing; it’s great to hear “stopping at McD” and having a visit with her canine friend!

  2. 🌸✝️ praying for strength for Amber and the family, wisdom for the doctors and peace that goes beyond all understanding for all.💜
    Your story is a strong witness to each of us. Thank you for sharing.
    Praying for complete healing and a hedge of protection around Amber.
    Praying that the fluid would resolve naturally and all treatment decisions would be the right ones for Amber.💜✝️
    In the precious name of Jesus. Amen

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