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ROHHAD and Neuroblastoma

Posted Aug 19 2009 6:25pm 4 Comments
As if one of these isn't enough for a child.......or the parents we were hit with both. Never in my life would I have thought this would or could happen to our baby....but it did. Now we live in isolation and have endured 2 years of chemotherapy treatments testing her immune system and the affects these poisons have against ROHHAD.

Kris was told by the doctor last week that he couldn't be paid enough to give Haven the Hi CY treatment again and we should be extremely lucky to have skated through it as nice as we did. We made it out with VRE, C. Diff, and minor issues --- it could've been so much worse. Haven never got the full ulcers of the GI tract and only used 1/2 a dose of blood transfusion (she was sick after 2 hours and they ended it).

So we sit and try to think of the good....hey we made it through a tough chemo....but hell the fact that we had to do chemo at all is F'd up! Hey, Haven is starting to do much better with physical therapy...then the fact that our 5 year old is on a 1,000 calorie low sodium diet doing physical therapy is just completely screwed up. How does this happen? Children are damned for being born and given a horrible disease that could kill them.

So do we sit and say "Hey we're lucky Haven didn't get extremely sick from the chemo and is at least out of the hospital" or do we sit and let the most horrible thoughts run through our head at night. Our child could die. She could stop breathing today. She could get Leukemia and not like regular Leukemia isn't bad enough but what she would get is a 2nd rate Leukemia which has no treatment and ultimate outcome is death.

I have no idea. We are not religious people and in fact have an issue with an all mighty power letting innocent children have a disease so terrible. We noticed a while ago how callous we are towards others who complain or stress that their child has a cold, runny nose, or needs to get booster shots. It's hard to not sit and say "and????". Our child is getting ready for her 6th surgery next monday, she's been on chemotherapy for almost 2 years, she's had 5 Staph infections, VRE, C. Diff, and multiple blood transfusion over the years.

So we have worked on our issues and tried to at least act like we care....and maybe you don't or can't understand our position. But it's our position....if you haven't been affected by such a horrible diagnosis on your child you'd never understand. We can't even explain it enough to make you understand. We just stopped talking. People ask us how Haven is doing and how we are doing and it's easier to say "she's fine or we're fine". But screw that - we're not fine.

We were given our roadmap while in the hospital. I thought we'd be done after this of all the poison....but Haven has a 3 year roadmap. Filled with many many months of bone marrow withdrawals and other things. 3 MORE YEARS........She will be almost 9 years old at that point. We started this at age 2 1/2. For 6 1/2 years she will have lived in hospitals....if 3 years is even the end.

Haven is definitely showing signs of parts that are good. But we're still battling a major disease - many areas have not improved. She has more energy and she is pottying on her own. But this is such a complex mixture of diseases.

September we will go in to meet with Endocrine and check her growth hormone again. Last May he told me that he wanted her to grow at least twice what she did last year. Which would mean she needed to grow 2 inches. She has only grown about a 1/4 of an inch. So mentally we are planning that she will begin growth hormone shots. This means we will give her a shot 6 days a week to help her grow. We will also check her Cortisol - which was a bit off last time we checked but with the treatments we wanted to wait to see how it was affected. Prolactin - I haven't even asked about that in a while but will at the next appointment.

I will now reschedule her Pulmonary visit and review her recent sleep study with him. He did add the extra wires to check her for seizure activity in her sleep. Which will go to a Pediatric Neurologist. We've only seen him one time and he determined ROHHAD was Endocrine not Neurology.

Now that I have given this medication at least a month to work through her system it's time for me to get back on it and start testing and questioning the doctors again. Her doctor is currently in Isreal on vacation and comes back in 3 weeks.....then we can sit and discuss all of this.
Comments (4)
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Haveyroo, Thanks so much for having the courage to say what I sit and think only in my head. "Yeah, geez, I am so sorry your kid has a tummy ache today. A cold, wow, thats too bad".  I go through the socially correct garbage, and honestly I do care very much about the well being of friends and family,  but what fires up those so-called harsh feelings is knowing that they are taking the true health of thier child for granted-t hat they couldn't possibly understand the fear and pain that surrounds a family who is caring for a child who is truely sick. I am a spiritual person, so I forgive the ignorance, but the so-called harsh thoughts are still there- and for good reason. They just don't understand. I hope and pray for wellness for your daughter!

Thank is very hard to say what you truly want to say because most people can't handle the truth and reality of hearing about how sick your child really is.  So we have to censor our truest feelings and some days I just want to kick something.  Thank you for writing to me!
I understand completely. My son is undergoing screening for Rohhad right now, and have been going through testing to rule out other disorders. I am thankful though for the health that is good, and know my place in this world that is filled with very sick kids that are undergoing so much more than my own son. Sometimes though I get so sick of hearing people fret over a runny nose because I am left thinking "I WISH"! But again, we have not been in the place where many others are- including your daughter, so my thoughts are with you. I only know what it's like to be afraid of what "may" be. I just can't imagine. Sorry it has taken me so long to respond. I have been digging through my 1000 mails in my spare time. Take Care! Kim

Hi Kimville

Please email anytime....if you have questions on ROHHAD I will happily answer anything I can.  My daughter's site is:



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