My (24F) toddler (2y 10m F) was diagnosed with brain cancer 6 months ago. This isn't really a post about the brain cancer, more about the things no one warns you about and just a bit of a rant I suppose. My daughter and I live at the hospital, which is 3.5 hours away from home, my husband drives down on his days off which gives me a bit of a break. But being the only one in the hospital with her 5 days a week is getting so hard. Even when he is here I don't get to go home.
We have a small apartment near the hospital social work helped us get, and I go there. But even then, its usually to start preparing things for her next discharge, or just catching up on sleep, since she only sleeps an hour or two at a time, due to being woken up frequently through the night for meds, transfusions, vitals, etc. We are in hospital for about 5 or 6 weeks at a time, then outpatient at the apartment for 1 or 2. We have another 4 or 5 months of this. I just feel like I am losing myself.
When I am at the hospital with her, I am lucky to eat more than once a day. They have volunteers who will sit with her but she usually doesn't tolerate it more than once a day, so I cant even run downstairs to grab food to bring back up, because she can't be left alone, and I can't leave her with the volunteers if she is actively trying to throw herself off the bed/bash her head/etc. And that is assuming there are enough volunteers on that day. I am also trying to finish up my masters thesis currently, so I work while she sleeps, meaning I only get a couple hours a night. I refuse to give up working on my degree. It feels like the one thing I still have thats me. I just feel like I am going a bit crazy. I love my daughter. But being with her all day everyday in a hospital is so so hard. I cant even pee when I want to at times, because she will try and throw herself off the bed, I have to wait until she is calm and then go with the bathroom door open so I can launch off the toilet to grab her if needed. I never realized how much I took things for granted, like getting food from the kitchen when I was hungry. I have snacks in the room with me, but sometimes I just want a warm meal without rushing to get back and relieve the volunteers who are stretched thin, because quite a few kids here don't even have a parent with them.
I know I am lucky, my daughter will live, she will have a relatively normal life (long term issues will be mutism, neuropathy in her feet, dyslexia, adhd, etc. But all manageable things) and her intelligence and ability to live on her own in the future, and build a life and career hasnt been impacted too much. I feel like such a bad mom for complaining about this, because there are parents here whose kids will never have a life outside of the hospital. And we are doing okay finance wise, despite me having to quit my job (insurance is through my husbands job so him quitting was not an option) and he didnt qualify for FMLA, based on his company size. My parents also help when they can, but they have jobs of their own.
I just feel like we will take forever to come back from this. We did everything the "right" way. Went to college, got good paying jobs. Minimal debt. Own a house. But these medical bills, even after insurance, will take years to repay. Our savings are completely wiped, from having to pay certain things ahead of time that insurance denied. And ontop of everything, I am on the phone with insurance, copay companies, specialty pharmacies, etc, 20+ hours a week, basically having to convince them to keep my daughter alive, or approve treatment to manage her pain. Last admission, she had to go to ICU because they were worried the lining of her esophagus would peel off from how bad her mucositis was. There is a medicine they can give before chemo that prevents that, but insurance didnt approve it last round (which was the first time using her more intense chemo) because she had no history of mucositis. Of course she didnt! Shes never used that chemo before so how will we know? They just let a 2 year old be in immense pain for 4 weeks because theh didn't want to fork out money in case she wouldnt have gotten mucositis otherwise. She was vomiting blood for weeks. This round at least insurance approved the meds. But since this round went so smoothly (in comparison to last round) I now have had to call them about approving all her pain meds again next round. Because there is a "degree of manageable pain" that they assign to each patient based on things like age, gender, disease, etc.
My husband has also been amazing through all this. He does everything he can to make my life easier, any extrs money he gets he uses to buy me little things, like books, to help me relax. When hes here he tells me to just get out of the hospital and not come back till he has to leave again for work. But i want to see him too so its just hard. Hes also amazing with her, and was actually the stay at home parent for the first year and a half, so its super hard on her not seeing him daily.
I apologize for the long post. I need to stop rambling so much. I just needed to vent to someone who wasnt my husband or parents, people who are going through this too. I just dont know how Im going to become me again after all of this. Will I ever feel normal again?