treatment planning

We’ve been home for a little bit over a week and are getting set with Carson’s outpatient therapists, just met with her Oncologist, and can be found at the neighborhood pool in between appointments- this girl is back to being a little fish!

The biggest update comes from yesterday’s oncology appointment. Dr. Kuril is amazing, and spent an extended block of time with us discussing treatment options.

Quick side story- after he introduced himself, I asked Carson if she had any questions for him. Without skipping a beat she looked right at him and said “What’s your favorite color?” This made us laugh, as this was one of the first questions every nurse/doctor seemed to ask her during her many neuro checks in the early days. Now she is spitting it right back out! …. And in case you are wondering, the answer was blue.

After reviewing everything, we’ve decided to have Carson considered for a clinical trial. If their test of her tumor tissue confirms what her pathology/molecular testing revealed, then she should be a candidate and would be randomly assigned one of two routes. One would be for her to receive the same chemo treatment that she would receive if not part of the trial. This treatment would be 15 months of weekly chemo treatments (we think- again… disclaimer is things could always change/ our understood timing could be off… the overall idea is a lot of trips downtown for treatment). This type of chemo would require that she have a port in her chest to receive the treatments. His explanation of this type of chemo seems to have less side effects than we’ve heard of for other types of chemo treatments.

The other treatment she could be assigned is what we would hope for, which would be an oral targeted agent medication that she take daily. This medication is already approved and used in kids for other types of tumors. The study is working to assess if this medication can also treat her type of tumor/markers found in her tumor and be an alternative to chemotherapy. This option would also require close monitoring of her team at MUSC.

The goal of treatment now is to shrink her tumor and kill it if possible. If you remember from previous posts, her surgeries were able to get a good portion of the tumor out but there is still part of it in there, as it is in a non-operable location on her brain stem. She has another MRI next week and follow up with Dr. Eskandari (neurosurgeon), so it will be interesting to see if we learn anything else from those.

If you’re head is spinning… you’re in good company 😵‍💫. We should know in 4–6 weeks what treatment route she is chosen for.

Once again, we find ourself in a position that feels out of our control and we are given another opportunity to trust in the Lord and his plans for our girl. Once her tumor sample is submitted to the clinical trial, we have no control over if she is chosen for the oral medication route, which we feel like would be the ideal treatment at this time.

However, we’ve seen over and over these past few months how what we think we want doesn’t happen (needing a shunt, needing a second surgery, not getting to head to rehab when we originally thought after the first surgery), yet we are still standing and our girl is doing so great.

There is no working hard enough to earn the desired treatment option, having magical connections that could get her in, or dollar amount to make it happen. It is creating an incredible opportunity to come to the Lord in prayer for his protection, his glory to be known, and trusting that he loves Carson even more than we do and is more powerful than this tumor. Please join with us in praying over this process and for the Lord to prepare our hearts for whatever the answer may be and for his perfect plan to be revealed.

We are feeling overwhelmed with wondering how we can manage her multiple therapy appointments each week, medical appointments with whichever treatment she ends up receiving and keeping up with her school with both of us working full time. Thankfully, I work in the school system so have a bit longer to get whatever rhythm we can down before I return to work in August. We are trying not to get ahead of ourselves as there are still so many unknowns, but would love prayers over this stress as well. This is challenging our belief in the Lord’s provision and giving another opportunity to trust and rely on him in ways we used to feel like we had greater control in.

We come back to experiencing so many mixed emotions at once, so now time for some great things!

• Carson was able to be seen right away upon our return by a PT, OT, and has her speech evaluation this week. She is in incredible hands and had great first appointments! Her OT is the daughter of one of our favorites who had Carson in her in-home childcare up until she turned four. Amanda (OT) had met Carson as a toddler at her parents’ house and now gets to work with her and help her grow stronger!

• Carson’s joy continues to amaze us. She is not allowing anything to slow her down and is figuring out how to navigate despite new challenges. She’s found enjoyment in things she used to love (swimming, coloring, giggling, being outside) and jumped right back in with her friendships. This girl has some amazing friends!

• She also made it home from rehab in time to celebrate her birthday with a front yard cupcake party last Sunday!

• We are so thankful for friends and family who love our kids and who are coming along side of us. Our girls were initially quite nervous to leave our sides after all that has happened these past two months…. but both made it successfully to their kids classes at church this past Saturday night! This is thanks to friends who our girls know and love who were right there with them. This may sound small, but was a huge thing for these two! Carson even had an older girl from her elementary class stick with her to help and Carson has been asking NON-STOP when she can see that friend again.

• Both girls have a new confidence and bravery in being around new people, which has been fun to see. This is a testament to the incredible nurses, doctors, staff, family, and friends who have loved our girls and made them feel safe in the middle of this wild storm. Thank you to all of you angels.

Phew. Well that was more than expected when I sat down to write this update. Thank you for your continued prayers, love, support, and care for Carson and our family.

🦄💜