We want to thank those of you who have come out to visit with Haven and help out with her during this time. We are very appreciative of your time with her. There are a few things I’d like to let everyone know who plans on future visits to our “insane asylum” of a house, not to scare you off but to better prepare you. As our house has been described by Grandma Virginia – which I thought fit perfectly. “It’s like living with ‘The Munsters’ or ‘The Addams Family’.
Yes it’s true – we rarely sleep. We sleep when possible, which could be anytime of the day, in any position, on any type of furniture available. To be perfectly honest, we enjoy a night we can get a solid 3 hours of sleep over a night of broken 8 hrs of sleep. When we can sleep from 1am ‘til 4am without interruptions we can make it through the day. But if you take last Saturday – we were up 4 times changing diapers and a lot screaming and walking in Haven’s sleep between the hours of 1am – 6:30am – well that was not a good sleep. Even though length wise I was able to say I was in my bed from 11pm until 7am. This makes for a very grumpy mommy and daddy and even grumpier Haven.
We would also like to remind those of you who are “super” sensitive or take things personally that our house may not be the best place for you. Not that we do not want you to visit but our daughter has a medical condition. She has 3 separate diseases – all of which are related in a sense but not. If that makes sense. We would really appreciate those of you who do come to visit or help to take the time to learn about her conditions and do not assume they have just gone away because she had the tumor removed. Her tumor was an extremely “hormonal” tumor. The best example I can give – a woman who is going through menopause. Haven has had all of the hormones that have made her body exist since she was born completely removed. She is not on hormone supplements as a menopausal woman would be. So controlling her anger and emotions is something she is going to have to start learning. My child has NEVER cried until after this surgery. Kris and I have never in 4 years seen a tear come from this child’s eyes – being sad or falling and hurting herself. She has never cried.
Haven also has Hypothalamic Dysfunction – this completely affects personality, bodily functions, emotions, vision, speech, and a slew of other items. This is a 2nd priority to the doctors to fix – by all means not a 1st priority to doctors or mom/dad. If anyone knew Haven before the changes on 2006 you’d know this is not her normal personality. Therefore, when she tells me she does not love me or tells dad that the way he does something is not right because mom does it a different way – we can not take this personally. We hope everyone can understand this is the way Haven is right now – we will not be putting her on temporary medication to mask the problems at hand as we have to document everything for her bazillions of doctors.
Haven is confirmed to have Paraneoplastic Syndrome – what has it destroyed we do not know yet. We can only hope it has not permanently damaged anything of severe importance. We will not know this for some time. We can only ask that everyone have patience with Haven when working with her or visiting with her.
I haven’t listed it yet but we have confirmed she has GanglioNeuroblastoma. As there are 3 versions of this cancer.
Believe me – if anyone knows the stress of having a child with a severe medical condition in this family it would be Kris and I. We have been working on this with Haven for almost 2 years and we understand that even 2 weeks with her for family members is stressful. If you would like to visit and/or help out we’d totally appreciate it. We’d love to get one night of sleep a week or a couple days of work a week without the worries of Haven and what she’s doing. We can not put her in daycare and we can not afford for someone to come to our house – especially when we have so many family members who say they want to help out. No – she is not incapacitated right now – she does love to color for hours non-stop – but I know she would love to just have someone color with her or watch a movie with her. Anyone can call her anytime – sometimes I can get her to talk on the phone for a while.
We currently do not have any plans for doctors until Friday this week. We will do a post-op meeting with the surgeons in the morning and then we will spend the rest of the day/evening with the Oncology team. This will be to review all of Haven’s pathology results and to discuss upcoming chemo. As it was mentioned from the team, they wanted Haven to recover for 2 weeks and then we’d start chemo. So that puts us in to starting chemo probably next week – as long as all tests are in by Friday.