Still no real answers. No donor yet. I’ve had several people ask me if they could be tested to be a potential donor. My answer is always that definitely, please sign up to be a bone marrow donor! We’re certainly not the only ones looking to have that life-saving procedure done and who is unable to find a related full match. And being a donor is really quite easy and very low risk, unlike most transplant procedures. Unfortunately, being tested or signing up as a donor wouldn’t directly help or affect Kendall. It’s quite a lengthy process, waiting for approval from insurance, waiting several weeks for results, etc., and Kendall’s situation is considered too urgent to wait.
We also haven’t officially heard if the doctors will be willing to make an exception in our case and allow Kendall to come home after his transplant. That leads me to my first potentially big problem: where will we be able to live if we need to move to Salt Lake for the next six months (although it may only be for around 80 days)? And so I am reaching out to you, my Meal Train audience, to see if anyone might have any ideas, or know someone who might…. I have looked into various funding programs for leukemia, cancer, and housing help, and have only hit dead ends. Either the funding is maxed out, funding is diagnosis specific (which would never be in our favor), or certain programs aren’t available during COVID. I also have no idea what we will do with our kids, school, my job, how we will pay an extra rent, or how to function without my local support network if we have to move (how would we get groceries?). No idea.
And then there is my second, seemingly larger, problem. We will be losing our insurance at the end of February. All of it, medical, vision, dental, even the life insurance we have through Kendall’s job (although I am looking into how I can pay for that policy out of pocket so it won’t lapse; no surprise that Kendall is ineligible for all types of life insurance now, even the ones that supposedly have no medical exams have clauses that exclude leukemia). The timing couldn’t be worse, as we will (hopefully) be mid-transplant then. It has taken months to get all the insurance approvals for this million dollar procedure to happen, and it’s not an option to start the process over. However, COBRA will cost more than our current income (and we do have more than a few other bills). We’ll figure out a way to at least put Kendall on COBRA, but we learned we make $100 too much to qualify for Medicaid. Any suggestions? I’m not allowed to apply for CHIP (not sure if we’ll even qualify for that) or Marketplace insurance until March when we no longer have insurance. When I have spoken with them over the phone I was unable to get any type of estimate about what our insurance premiums might be, so no way to prepare. I’m nervous, though, because even with Kendall’s current insurance from his job our monthly expenses are still over our current monthly income. As the full-time caregiver during a pandemic, my hands are tied for now with getting a full time job with benefits. Any suggestions for me? Would someone like a disability lawyer be helpful? I want to do as much legwork now as I can, since if we do have to move to Salt Lake it will likely be the same week our insurance ends and things will be really hectic.
Anyhow, we’ll figure things out somehow. Hopefully we’ll get some answers soon so we can start making necessary plans. Kendall’s hospitalization for his bone marrow transplant is still scheduled for next Wednesday the 13th, but I’ll be surprised if everything is able to come together by then. We met with infectious disease doctors last week, who are still trying to figure out what the nodule is in Kendall’s lungs and how to treat it before his transplant. One theory is that it may be tuberculosis (we can’t rule out the possibility that Kendall may have been exposed to tuberculosis at some time: a likely exposure would have been when he was in a hospital in Romania for a week and he was in an open room with other patients, one of whom definitely had some kind of respiratory issues….). Just testing for tuberculosis is…tricky….when a patient has a suppressed immune system, since it is likely he would test negative even if it is TB in his lungs since he wouldn’t have an immune response to the test. One of the things Kendall did at the hospital today was more in-depth testing for TB. The other running theory is that the nodule is a fungal infection, but that is also tricky to treat because the anti-fungal medicine interacts with the daily oral chemotherapy drug Kendall needs to take. So, we’ll see if that is able to get resolved to even be able to get his transplant.
Sorry to not have any light-hearted anecdotes to share in this post. The truth is, I’m feeling worried and stuck on what my next steps should be. The past few weeks I have really related to the story of Peter when he walks on the water. He trusted the Savior and took those first steps, not understanding why the Savior was able to walk on water, but still stepping forward with faith. I’ve been trying to focus on taking just one step at a time, while not understanding all the whys or hows. But then the wind and those waves were so high and treacherous that Peter faltered and started to sink. He needed help. Things are looking dark and treacherous and stormy right now for our family. I fully believe that the Lord is aware of us and our situation, and I know we will somehow get through this even if the outcome (often) looks different from what we want. I also know, though, that often the Lord uses the people around us to answer prayers. I’m hoping someone else might have ideas or connections that I don’t.
(P.S. If anyone wants to reach out to me directly with any suggestions, my email is s………[email protected].)
