As with most mothers of a child with Cancer I should be stressed and worried about this and it coming back. If you sit and think of one of the worst things that could happen to your baby it would be that they would be diagnosed with Cancer that randomly selects who it wants to attack. However, then you throw in ROHHAD and I don’t even have time to think about weather or not Haven will have Leukemia before she is in her mid 20’s or if all the chemo she has taken will cause another type of Cancer we have yet to hear about.

Haven has done a couple years of experimental chemo that has completely regressed some symptoms and helped her in so many ways. She is a completely different child now than she was when we first entrusted Hopkins to save her life.

In 2008 (at age 4) we were told - Haven is on the progressive road to stop breathing on her own by age 7.

I have been terrified of this number since then….almost 3 years. As it is Haven is set to turn 7 on January 26th.

In early November I scheduled a meeting with her Pulmonary doctor and told him that I had noticed Haven was snoring a lot and very loud. I also noted to him that her chest was caving in a bit while sleeping like it was hard for her to breathe. Her sleep walking episodes are also from 4am - 7am. Sleep walking should start around 3 hours after falling asleep in general…..not when you are about to wake up. So she was evaluated by two doctors and quite frankly when I request a test they usually don’t argue if I bring some facts.

So Haven was scheduled for sleep study immediately and we did her test on November 26th. During that time we changed phone numbers a few times and my numbers weren’t in the (more…)