July-Sept..Scan day, tomorrow.
Goodness, the last few months have been a true roller coaster. Firstly, Kai’s Instagram account has become the go-to for updates because it’s so much easier to update in real-time and unfortunately, we've had a lot going on. But, I want to be sure I’m reaching all those who support and love Kai and so I will continue to update here as well. The end of July brought us a clear/NED (no evidence detected) scan and my goodness did that bring some relief. For those new to Kai’s cancer journey, this doesn’t mean “remission” it’s just a chance to breathe a little. But, let me tell you, as I mentioned in my last post, we have seen very little of our sweet boy in terms of him being “himself”. He has been so sick. Sick with different viruses, mucositis, bacterial infections, and a very long list of things that weigh him down due to the chemotherapy and his body has not able to fight it all off. The MEMMAT protocol is not supposed to completely suppress his immune system, but his bone marrow has been through too much to easily recover from a constant attack on his body. His numbers plummeted (which is his body showing us it can’t keep up with the important production of bone marrow needed in order to protect him), and his ANC got to 0 zero…(not good-should be in the thousands), we have simply done too much damage to his body with chemotherapy. For months he hasn’t been strong enough to do much of anything. His balance is totally off so he is still not walking and he hasn’t had the motivation to do much. He’s been angry and sad and feels terrible, all he wants is to cuddle mom, but is also very whiny and cries constantly.
We continued to push him from scans in July to present day. It’s Oct 2nd, scans are tomorrow, and after a couple of hospital admissions over these last couple of months, we decided (with our team) to give Kai a little longer than normal break after finishing his 9th round of MEMMAT. Right around 5 days post hospitalization for antibiotics, fluids, and close monitoring, we stopped his chemo and he has started to come back to us. He’s had almost 2 weeks off treatment and has been absolutely thriving. He didn’t eat much of anything for months. In the past 2 weeks, he hasn’t stopped eating and drinking. It’s amazing. He has taken a hand full of steps on his own, he has hung out with grandparents & Aunties (without us!!!) this has not been an option, ever. Still, some days are more challenging than others, but overall, it’s a true blessing to see him being a ‘normal’ 2-year-old, getting into everything and just full of words, love, belly laughs, and fun. We can’t explain how it’s filled our hearts in this home. Our entire family just sits around and watches him in awe.
All of this is written with careful breath because we have no idea what is to come. We have scans tomorrow, Oct 3rd (just received confirmation that he doesn't have covid, so it’s a go. He has no symptoms, but a swab is required pre-scan and if you are positive, no sedation is allowed.
This scan will dictate our path forward, or more specifically our options in the near future. The dreaded stress is starting to mount as we prepare for the logistics, coverage for Cruz and school, work etc. And even more, the act of asking our hungry, happy kid to go without food or drink from the time he wakes up, 5 am until his 11 am scan, it’s practically an impossible and sad task. Then our baby will be sedated for 2 hours while they take pictures. With and without contrast. He will be handed back to us and we will wait. Wait for a report that will come to our CHLA app before we hear from the team. We will try not to read it before hearing from them, but really… !!! and now… Our small break may or may not be coming to an end and I’m not ready for that. Honestly, I’m not ready for any of it, so I’ll say this. I’ll sit with my uncomfortable dread and then I’ll let it go. I will enjoy every moment and hope for the very best. It’s all I can do.
As a family, we were saddened to lose a lovely part of our family in August. My Aunt Ellen was a bright beautiful light and loved us all fiercely. Her family was generous to ask all her loved ones to donate to Kai in lieu of flowers and raised a significant amount for his fight. It would have been just what she wanted. And I can’t thank her daughters, her husband, and their extended family enough to think of us during their pain. For everyone who gave to Kai and our family in her name, thank you. endless. This is community. Life is teaching me an important lesson. I’ve always had a hard time accepting help. I have no choice now. I’ve had to ask for it, often and that has been hard. But, I do it all for Kai. For family. For our Ohana.
Every dollar you can spare is a blessing. We pull from this account for all things Kai. We have a ton of out-of-pocket meds that Kai needs monthly. My inability to bring a steady income. Things come up like thousands of dollars for an anesthesiologist that is ‘out of network’ during our routine MRI’s where we have no control over who is attending to Kai, and many many other things that should never be a burden, that are. Being that we are in a hospital that is in-network and also, they don’t share who is assigned to our case until we arrive, only showcases the injustice that our healthcare system asks us to burden. At CHLA MRIs are scheduled 4 months in advance and you don’t ask questions. You just take what you get. You have zero control.
During this small break, I have taken on a few small work projects which I do after the kids go to bed. This has been helpful in so many ways and also, I’m tired. Simply, tired. It will be short-lived, but I’m so grateful for Soho Experiential, my love Lauren and their owners for having my back, no questions. I’m beyond grateful that Chasen has been able to continue to provide for our family. His employer and management at Apex Systems have been the epitome of a company that cares greatly for its people and has allowed him to toggle between demanding work and family. He works so hard and it never goes unnoticed in our home.
It’s been 21+ months that Kai has been fighting. That our lives were turned upside down. That our hearts were shattered and continue to be. All we can do is say a huge thank you all for the love and community you all provide and for loving our kids, as much as we do.
Hug your families. Tell them you adore them. Even when they are cuckoo. Do it fiercely. Do it often.
one love.