Well - I figured I better use my lunch break to update or get some thoughts out because I know by 7pm tonight I will want to be asleep. We're exhausted....this is tiring and draining. I can't even explain it - only someone who is or has gone through all this can understand. We go insane with worry and we can't think about anything else. I can't believe how many doctors we talk to constantly. We meet every evening to compare notes after Haven is asleep and review any happenings or changes we've noticed.
Honestly, I don't need a doctor to tell me Haven isn't doing well. We can see it. She is not getting better and we can't see any changes for the good. We can absolutely see where they are getting worse. I talked to Haven's doctor yesterday and I couldn't even be upset. I just told him "this is wrong and this is worse and i don't know what to do anymore".
I know there is no cure for ROHHAD and currently there isn't even a treatment to start with. So we're just shooting in the dark. The chemo she has been on has not made a difference for the good. She still has 2 weeks left before they will discuss changing chemo treatments. To me - if it hasn't happened in 6 weeks it won't happen in 8 weeks.
We feel like "this is it - we can't do anymore" but then we look at Haven and this can't be it. This can't be all we can do. Haven is at the hospital a minimum of 3 to 4 days a week - EVERY WEEK. We administer chemo two times a day. Her blood pressure has slowly been creeping up but we keep giving her the blood meds. We're selling as much as we can to help pay for things - even collectibles I got when I was Haven's age! I have no need for them now - she needs it more than I need a doll or something.
She has gained almost 10 pounds in a month. I'm tired of people looking and staring at her. She doesn't want to go anywhere because she sees kids looking at her. She looked at herself in a floor length mirror for the first time and was asking about her scars because she hasn't seen them before. Her chest is constantly bruised because her port is accessed so much. She is taking 4 naps a day and we consider sleeping at night a nap now. She's up every 2 or 3 hours - so it's not really sleeping.
We have :
Orthopedic Surgeon tomorrow for her spine
Ultrasound for her legs Feb. 24
Eye surgery March 26
Blood gas check on March 26
Every other day visits for blood levels
Waiting on sleep clinic call back
Surgeon for the tumor in her back should be calling for an appointment
And in all of this I haven't reminded the Oncology team that we need the next MRI to check the Neuroblastoma tumor in her abdomen. I think we could sleep for a week.
I am thankful for all our friends that send us encouraging notes and to the world who send Haven cards and letters every day.