8 Jan
2020

B Cool; B Kind; B Raf

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By: Amy Cesolini Category:newsletter

So yesterday I had a really long update typed up, going through a couple of options we had sitting in front of us. However, I fell asleep before I could actually post it and then this morning was super busy, between radiation, OT, PT, and speech therapy coming in to assess David. And when it all comes down to it, none of my update that I wrote last night really matters a whole lot because we got the pathology report back!
His type of melanoma is B Raf! This was our best case scenario! They have a good, effective treatment that they can start him on!! He still needs to finish his radiation (he still has 4-5 more to go to) and this treatment is by no means a cure from his melanoma, but this will give us the best chance for a longer life for David. First thing in the morning, our oncologist will get the ball rolling for David to start getting the medication. Also, we will be switching over to see an oncologist at Banner Gateway, who specializes in melanoma treatment, as soon as David is discharged…. which will HOPEFULLY be tomorrow. It is SO GOOD to have some good news after SO many days of bad news after bad news. God is so faithful, and he has been with us every step of the way. Even during the hard days, we found comfort and peace, knowing that He is the one who holds our future. The road ahead is still going to be a very hard one, but tonight we are grateful for good news.
David’s sodium has leveled out, with the help of some medication. Hopefully it will continue to remain constant, so we won’t have that as an obstacle before heading home.
Thank you for all of your prayers!! It has meant so much to us to have all of your support. PLEASE don’t stop praying for us. Even with this good news, we know that there will still probably be setbacks as well along this path, so we still need all the prayers and support we can get!!

Prayer requests:

  • Complete healing of David’s body
  • For the radiation to shrink the tumors on David’s spine, so he can have some much needed pain relief
  • For David’s sodium levels to remain consistent
    Thankfulness for favorable pathology report
  • For the treatment for David’s cancer to be very effective
  • For Davids strength to continue to return
  • Thankfulness for David’s medical team. They have become like family these last couple weeks.
  • For the family members that are helping with our kids. Give them strength, patience and a showering of love.
  • For everything to get cleared so we can go home!!

We will continue to update you all, so you know when David actually gets discharged and how his journey continues. Again, thank you for all your support during this time! It has been a huge blessing in our lives!!!

The best nurse ever, Katherine, went and got us strawberry Pina Colada smoothies to celebrate.  Like I’ve said, we have an amazing medical team supporting us!

Ninja Edit:

   I know I constantly throw a lot of information at you guys, and I already updated about the big news today, but I realized that there’s (literally) one missing piece in this puzzle.
   After David had his two brain surgeries last week, they had to leave part of his skull off (called his bone flap). At that time, it was believed that he would probably never have the opportunity to get it back on again, because it takes so long for swelling to go down, and by that point, there’s a possibility of having to radiate his head, which means they can’t operate on that area to replace the bone flap. This means, that David’s head is very fragile. It means that he will have to wear a helmet to protect his brain any time he is out of bed. One fall could have devastating effects for him.
   Yesterday, Dr Kumar (David’s neurosurgeon) came in and was amazed at the progress David has made and the amount the swelling has gone down in his head. He gave us the option of going in for surgery on Friday to get the bone flap replaced. There were a lot of questions about this. Of course we would LOVE to have David’s bone flap put back on, but there are risks in the surgery itself, there could be more bleeding again, causing the bone flap to immediately come back off, and then the surgery would all be for nothing. David could lose mobility in his left side again, and it would also mean at least another week in the hospital, which could potentially delay any further treatment for David.
   We spoke again with Dr Kumar today (before we knew the pathology report) and we were still very much on the fence about it. Once we found out the pathology report, we both knew it was time to go home, say goodbye to David’s bone flap and get back to living life with our family at home. We could potentially start his immunotherapy by the middle of next week and we don’t want anything to compromise that and we don’t want his therapy to compromise any healing that would need to be done after a surgery like that.
   It wasn’t an easy decision, but one that we feel very much at peace with. It’s most important for David to be at home, for as long as possible with us, and choosing not to do surgery gives him that. That’s not to say that if he goes into remission, and they haven’t had to radiate his head, he could potentially get it back on down the road, but it’s just not the right time right now. There’s too much on the line, and he has a life to live now. No more hospital for us!

5 thoughts on “B Cool; B Kind; B Raf”

  1. YAY!!! Sounds like you guys are on top of things and making the best decisions under difficult circumstances. Go home, stay strong and positive and enjoy your beautiful family. Prayers still rolling your way!

  2. What a big praise report! So happy to hear the results of the pathology report and to hear that you’ll be going home! Sounds like everyone has been doing an excellent job with your kids – and will continue to do that, but I can imagine how happy the kids are going to be with the two of you back at home! Our prayers will continue!! By the way – I love e sunglasses that “fall” on the two of you🙂

  5. Praise God. Being home is also healing for the body because that is where he will be happy. In spite of all he’s been through he looks great. Tell him I said to shave his head he’ll look even more handsome. He knows I’m a crazy auntie lol. Our continued love and prayers to all ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻For the 10 of you💋

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