Thank you so much to everyone for your love and support. It means so much to us. The whole world has been in isolation and quarantine, experiencing a semblance of what life is for us now, with or without Covid happening. Easter Sunday 2020, was the last day my life felt semi-normal with my biggest stress being a solo mom entertaining an energetic toddler indoors, isolated with no help, unable to work, during a pandemic. Now that looks like a cake walk. Life is perspective. That night, Tyan couldn’t sleep and complained of knee pain. Two weeks later of fevers, mouth sores, and bone pain, I wished my son had Covid instead of ALL, acute lymphoblastic leukemia. I went to the ER to get a Covid test and blood tests. I didn’t understand how he could be getting so sick when we weren’t in contact with any people and had been quarantined for several
weeks. I went to the ER expecting a three hour visit, and a viral infection diagnosis. Instead, we stayed in a small hospital room, not allowed to venture out for almost a month.  The everyday bacteria and virus in our environment that people normally fight off easily with our immune system, were causing him to have infections and fevers because his white blood cells were low. The knee pain my baby complained about night after night, keeping me awake like his newborn days, while massaging his leg was due to the crowding of cells over growing in his bone marrow. I couldn’t talk about it, write it or say the words. I didn’t  believe it was possible. It had to be a mistake. I was in shock. I couldn’t bring myself to pray that it wasn’t so because I was in a deep abyss. Thank you to those that reached out and responded to my prayer requests with no explanation, but I just couldn’t bring myself to share what was happening with someone else and make it real. I cringe even today whenever I see or hear the C word. I went through the steps of grief and have never felt such despair and anger. All that negativity probably attracted the car accident that showed me things could be worse. Ironically, it was a delivery driver on the phone with lapsed insurance. Now, I can only do my best to be grateful and count our blessings. It has been difficult for me to cook, clean, sleep, lift, drive, sit, pretty much everything. I had a big pity party. LOL. Now, I can only laugh and surrender and find a way to be grateful. So on top of Tyan’s treatments, we have our therapy appointments too. Thankfully, we are recovering, and it appears to be temporary. Win! It’s also nice, though scary, to get out of the house even if it is for a doctors appointment. Tyan is in a clinical study with treatment for two years versus the standard three years for boys. Win! He has gone into remission with the treatment. Win! The continued treatments are to make sure all the abnormal cells are gone and not hiding in his brain and spine to prevent reoccurrence. Before the current treatment protocol, reoccurrence was common. Every time we go in for a surgical procedure for treatment, which varies from weekly to monthly depending on the phase of treatment, he has to have a Covid test. That, incredibly, has been one of the worst things of all the treatments. Through this whole process, I often feel powerless. Every time I sign a consent form I want to yell no! I don’t want to do this! I don’t want to consent to the 20th Covid test that further damages his already delicate mucous lining. I don’t want to pin his arms and legs down while he screams mommy mommy help me, mommy mommy I don’t want to, and then has nightmares at night crying and saying the same thing over and over again in his sleep. No! I don’t want him to get General anesthesia for the 20th time that can cause learning and developmental issues when done so often. No! I don’t want to take away my baby’s choice to have biological children. I want to be a grandma! I don’t want him to fall and lose his balance. Oh, what? This can be permanent? What? Heart issues can show up decades later as a late effect? And as superficial as it is, I don’t want my baby’s gorgeous virgin hair that has never been cut to fall off. What? Because of your hospital policies and it’s near closing time you can’t start the lifesaving IV antibiotics that should be given within an hour of his fever? Even though I have been waiting here for 2 hours already? I have to go to the ER? I have to wait with the Covid patients in the ER waiting room? My son just stopped screaming. Is he unconscious, in a coma from sepsis in the ER parking lot or is he just so tired now that we have been waiting for 5 hours and fell asleep? Oh, your sorry and this shouldn’t have happened? Oh, no harm done since he survived? I can’t get his lifesaving medication from the pharmacy today because the insurance won’t authorize it? I have to use their mail order service? Oh it’s Friday so I have to wait till Monday for it to ship out?  Oh no one answered my phone call or replied to the 5 messages I left because you are all working remotely because of Covid? No, No, No! I don’t want any of it. 

Your generosity will help support him with medical costs and anything he needs. So we have more choices. Our yearly hospital insurance deductible is $8500. He has 20 more months of treatment. He hasn’t been able to go to the dentist for a year and has a few cavities that are developing. The treatments make his mouth lining tender and develop sores so it’s been difficult to brush his teeth well everyday. The doctors say to wait to have any dental work done because of the danger from bacteria during this time when his immune system is decreased. So we anticipate a big dental bill too. Any extra funds will support us taking time off from careers to be there for him and keep him safe during this crazy time, and his dream wishes. Lion King helped get him through the days in the hospital. To get him through the next 20 months of being our brave lion cub, we hope to celebrate his completion of treatment in 2022 or five year survivorship in 2025 with an African Safari. I know I won’t be able to breathe easy till 2025.

I don’t know what the future holds. For awhile, I could only focus on one day at a time. Now, I can look at things a month at a time. Win! I don’t know what happens after disability payments run out in 6 months, where we will live, if I will have a job to go back to, and if I do what happens with Tyan.  His father lost his job in Canada in March and has to travel back and forth splitting time between the US and Canada. We can only take things one month at a time. Up till last week, I felt like my nervous system was on overload. I was hypersensitive like my flesh was exposed. I realized that I had been in crisis mode for so long that my fight or flight reflexes were going through the roof. It literally was life or death for me every day.  With the support of everyone this week and the arrival of his dad from Canada, I feel like the cavalry has arrived and I can relax a little. I’m really touched by everyone. People I haven’t seen in years and people I have never met have extended themselves. After feeling so lost and alone in the spring, this outpouring brings me to tears in a good way. Blessings to you all. Thank you so much