Our Fierce Kalyani at 13 years old is having another brain surgery due to brain cancer progression.
Her Story:
Kalyani was diagnosed with Medulloblastoma, a malignant brain tumor, in June 2020, at 9 years old, right in the middle of the pandemic. Due to the tumor resection and swelling, she suffered from Posterior Fossa Syndrome, losing all her motor functions including speech and requiring a feeding tube. She worked really hard with PT, OT, and Speech therapy to regain as many as those skills as possible. All while undergoing, 30 sessions of proton radiation to her head and spine, 9 cycles of chemotherapy, and countless blood and platelet transfusions. She finished treatment in Dec 2021.
Unfortunately, that was short lived. Just as we started trying to embrace our new normal, she relapsed with leptomeningeal spread, which is considered terminal, in April of 2022. We opted to try to keep out of the hospital as much as possible and began an oral chemo treatment, that could be administered from home, with weekly lumbar punctures with intrathecal chemotherapy. While that was working and we saw some decrease, it unfortunately made her super sick. She started struggling to tolerate her feeds, daily vomiting, and she ended losing a lot of weight and getting quite weaker. As the body gets weaker her cancer got stronger and progressed with new spots to the brain. At that time, that treatment was stopped, she had a gtube placed instead of the NG tube, and we started looking for ways to stabilize her weight loss and get her healthier and in better fighting shape. She finally was eligible to receive radiation again, and she started a second round of proton and photon radiation to the brain and spine. That worked! The spine remained stable while eliminating the spots in the brain. Due to the cancer remaining stable for 30 days, she was eligible to start the DFMO trial in March of 2023!
It was the more than we could have ever expected it to be. Although she had severe hearing loss as a side effect, requiring hearing aids, she was able to live the most normal life possible. She started gaining weight. Her energy improved. Her blood counts started getting better and better. She was THRIVING and remained stable for a beautiful 20 months until September 2024. We got the news we knew would eventually come and never wanted to hear. There was progression with new growths on the brain which meant she could not longer remain on the clinical trial.
That leads us to now. The last few weeks have been an intense rollercoaster. Just as we thought we had lined up a plan for treatment, curve balls were thrown our way. She developed a UTI that caused a lot of problems including some weird reactions to the medications prescribed. The imaging we had done at the beginning of October, as part of the plan, showed some changes reflecting a possible increase in brain pressure. We were planning to move forward with SRS, stereotactic radiotherapy. She had the simulation and mask done for it. Unfortunately, due to that increased pressure within her ventricles, it has to be on hold until the pressure can be stabilized. The increased pressure caused a progression of neurological symptoms that not only terrified and stumped us, but they also added a sense of urgency to get a new treatment started ASAP.
She has been having balance issues causing quite a few falls including some head injuries. She was no longer safe. We had to bring the walker back out a few days ago. It was absolutely heartbreaking to do so. She had worked so hard to be walker free and her having to use it at school absolutely broke us. That combined with transient changes in vision, short term memory difficulties, changes in mental state, and some confusion, prompted a call to her oncologist that suggested an ER visit. And here we are. She has been admitted. The UTI has also not been resolved, and after new cultures, they finally found an IV antibiotic that it would be receptive to, and they have begun another course of treatment for it.
Kalyani will be undergoing her 3rd brain surgery. This time to take steps towards relieving the brain pressure. There are a couple of options as to what they will be doing, which wont be determined until she's on the operating table and they can truly see what's going on. The surgery will be tomorrow Monday, Oct 21st.
Right now, we are physically and emotionally exhausted, terrified, sad, angry, and wishing things were different for our #fiercekalyani. In order for us to be here and present with our girl, Nadja's (Mom) parents are at our home taking care of Luis (16) and Adelie(8).
We are so grateful for our support system and know things could be far worse for us. Derrick (dad) receives military VA benefits as a 100% disabled combat veteran, and a purple heart recipient, but quite honestly, it is not enough. Not in this economy with 3 children, and especially not with the 4.5 years of fighting this beast with our daughter. We are depleted, emotionally, physically, and financially. This hospital stay will 100% take a toll on us. There are a lot of direct and indirect expenses that come with a child with cancer. This is not a sustainable lifestyle by any means.
We have tried to avoid doing this for as long as possible. We are the type that hate asking for help. But here we are. We hate it with all that it is in us, but we have to ask our village for help. Anything and everything that comes in goes to support our strong fierce girl and her siblings that have had to sacrifice so much to make sure that Kalyani can keep fighting on. This is not fair. This is a level of pain I wish on no one. Even if you cannot help financially, please share, and as always we welcome all the love, support, well wishes, positive energy, good vibes, prayers, whatever for of positivity that can be sent out way.
We will keep posting updates here as we can, but her social media pages are the best way to follow for the updates. Search #fiercekalyani. We are not going to give up. We will keep fighting for our girl with everything we've got.