Day 41, It’s Not Quite Brain Surgery

(Warning: long but positive post ahead)

Actually, it’s not brain surgery at all — as far as anyone can tell, the MRI shows no tumor regrowth, so Thursday’s surgery will “just” be reinstallation of the skull flap, and no additional surgery to do anything to the brain is necessary!

This really is about as good as we could have hoped for, so we are celebrating this news!

As Dr. Martin was explaining the MRI results to us this morning, it struck me how he talks about the brain, about the surgical process. Clearly, he has been doing this for a while, so I joked with him that he makes this sound “simple”. His reply was a witty “well, it’s not quite rocket science!” And then he pointed me to this Brain Surgeon sketch on Youtube – it’s a good laugh, worth 2 minutes to watch.

Starting off with this good news, the day just seemed to accelerate from there.

We met with the Radiation Oncologist from Hartford Hospital, who will be coordinating the radiation therapy for Amber. We will be meeting with her to start the process next Thursday, and immediately jumping into 6 weeks of daily radiation treatments. Nicely enough, she is looking to coordinate with our local hospital (Backus in Norwich), so that we can receive the treatments with only a 15 minute drive, instead of 50 minutes up to Hartford!

Of course, receiving the treatments in Norwich only makes sense if Amber is back home … and we are indeed talking about bringing her home in the near future! We will assess things after this Thursday’s surgery, but if everything looks good, and PT/OT say she is ready, then we may be looking at next week! So the discharge nurse came and introduced herself, and started discussion with us about the equipment and supplies we’ll need. After 41 days here in CCMC, it’s weird to think about being back home, but this will a great boost to Amber’s emotional health.

And then with PT today, Amber got to try out that new leg brace, and was able to stand on her own two legs, with no support from anyone else (though we were all within 1/2 inch of her just in case, of course). After some exhausting exercise, we got a new wheel chair to prepare for home. A simple wheel chair, striking because of the symbolism – we no longer need all the crazy straps and supports of the one Amber has been using up to this point. We also got a walker for her, to continue exercising those legs until she no longer needs the assistance.

We then put the new wheelchair to good use, with a trip outside. Sunny, breezy, beautiful. Just what Amber (and I) needed.

We wrapped up the day with some family visitors, which kept Amber in high spirits. I’m hoping the food they brought for me wasn’t meant to be shared with Caron, because I destroyed the whole tray in one sitting.

By the way – thank you to those who commented here or reached out to us directly to suggest a port as a resolution to the challenges with the IV. That reminded me to discuss with the doctors here, as we had previously discussed a port as having application for some of the cancer treatments in the future. From today’s conversations, everyone has agreed that a port will be inserted during the surgery this Thursday, instead of during a separate surgery later. And my little girl has had more than enough procedures over the past 41 days, so we’re very happy to avoid additional surgeries!

So today is a day of thanks. Thanks to all of you who have been praying for Amber, thanks to the Doctors, Nurses, and all of the staff here at CCMC and at Backus hospital for getting us this far and putting us on a path toward recovery, and thanks to God for helping Amber stay strong, body and soul. The support for Amber has been overwhelming. The community of people that we have learned are praying for Amber, from many Churches, many schools, many organizations, is overwhelming. The personal notes we’ve received, privately and in the comments of this blog, from others who have gone through their own health battles, especially those with cancer experiences, has been incredibly touching. We are truly blessed to have this support for Amber.

But we are far from done. We continue to make great progress on the Elephant, as Amber continues to work hard to recover from the stroke. But the Whale is looming larger than ever now, becoming more real to us as we have formally scheduled the beginning of the cancer treatment. And let’s be very, very realistic – battling Glioblastoma Multiforme is going to be very, very hard. We are preparing to put everything we have and more into this fight. We will do whatever is necessary to see Amber through this.

So we ask for continued prayer. We ask for prayers for Amber, that she may continue to gain strength and progress toward a healthy future. And we ask for prayers for the medical professionals providing for Amber’s care, that they may be blessed for the work they do, and that they continue to have the knowledge, clarity, and will to propel Amber toward health.

20 thoughts on “Day 41, It’s Not Quite Brain Surgery

  1. That’s our girl! The amount of strength and positivity that she has is absolutely infectious! To see her transformation over these last 40 days is truly inspiring. Know that auntie and uncle will be by her side (and yours) for ANYTHING that any of you will need. We love you so very much!! I never really thought of anyone being my hero, but Amber Grace is totally mine! Keep up the good work and we will see you guys at home when we return!

  2. Outstanding news!!! Local treatment for Amber’s continued care will be such a relief to the whole family: you’ll all be HOME and together. I know what a long hard journey this has been, and there are still miles to go, so be sure to enjoy and celebrate this huge milestone! I’m absolutely delighted and in total awe of Amber’s warrior spirit!!

  3. Oh Matt, Caron, I am so relieved and happy to know that the outcome of the MRI was so positive. What great news to wake up to!
    God is good. He is there, guiding the doctors and nurses and therapists; keeping Amber strong and determined; lifting you both up to help you keep going.
    Each of the 41 days (yes, even the first one) has had forward movement towards health and wellbeing. In such a difficult situation, every day has brought good news in one way or another. What an amazing child you two have reared! Without her determination and resolve all of this progress would have been impossible. She is certainly a super hero!!!
    We will continue to pray and to praise God for each little (HUGE!) step towards healing.
    Thank you for allowing us to be your cheerleaders. God bless you.

  4. This news is so awesome. It made my day already and it has hardly even started yet! 😃
    Come home soon, Amber!
    Hurray, hurray!! 💜🎶💜

  5. ❤️🙏🏼 Keep up the fantastic work Amber! The best news! God bless

  6. Hey Matt,
    We’re thrilled to have this news and are sending thanks to God and all the rest of your medical and support teams. There’s the old saw about journeys and steps but this day was certainly a leap to be celebrated. We’re looking forward to more great news about Super Amber and will be with you through ups or downs.
    Chuck and Lucia

  7. So glad it is more good news for Amber. We are inspired by her strength through everything and your families faith. We continue to pray for intercession and healing for Amber. God bless you all.

  8. Ok Good, good news here. Now we are going to believe NO Chemo neccesary

  9. Delightful news…have been waiting on pins and needles to hear. Thank you. Love, Aunt Jean.

  10. Great news all around! This small but significant battle has been won, but the greater war continues. You can’t have ultimate victory without the smaller wins, and Amber is leading the charge! Bring it home, lil’ Miss! Love, Uncle Keith. 💖💖💖💖💖💖💖💖

  11. I am so happy to hear the positive news. It has been a long road for everyone and looking forward to hearing how she makes out once Amber is home. Prayers are still going out for Amber’s road to healing.

  12. So happy to hear you received positive news yesterday. Continued prayers for you all. Extra prayers that Amber will be able to come home next week or shortly thereafter!

  13. This is the most wonderful news to read! So happy you received a positive report. Continued prayers for healing and strength for that sweet girl. I am in awe of Amber’s strength, faith and bravery.

  14. What wonderful news!! Amber, you can do this! We can’t wait to have you home. In the mean time, many prayers are being said for your recovery!

  15. 🌸 This is wonderful news! Thank you for sharing and thank God for so many blessings for Amber🦋. We will continue our prayers for all; family, friends, doctors, PTs, nurses, therapists and all hospital staff who work tirelessly on a daily basis. Praying for God’s healing for Amber and strength for your family all day and all night. ✝️💜

  16. So glad to hear that Amber is receiving such good care and support. Our prayers are with you that she is soon home.

  17. Good news all around. We will be praying for continued good news and Healing prayers. We love and miss you all so much!!

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