ROHHAD Life

It's been a long time...guess since February of this year.  Haven's had quite a few quiet years.  Last January we met with Oncology and did a lot of scans and located a spot near where here original tumor was.

But it was so small no one was really concerned and we let it go and decided we would watch it.  We went through life with a Neurosurgeon for a tumor in the pituitary in March.  That had been resolved and what seemed to be going well has changed.

She has continued with her C-pap and sleep studies.  We pretty much live at Primary Children's Hospital in SLC but one thing we were super excited about this year was her Pulmonary doctor from Hopkins moved out here.  Happily he is her Pulmonary doctor once again.  He is amazing and we love him.  Good to see a familiar face too.

She did a PFT - Pulmonary Function Test.  Which wasn't too great.

Haven has been on Growth Hormones for a few years and has also still been doing her IVIG every 4 weeks.  We've been doing IVIG since she was 4 years old and now she's almost 12.  Luckily she has a nurse that she absolutely loves and that cares so much for her.  She even comes in if Haven happens to need blood work on her days off.  We do our IVIG on the weekends which helps me with working.

In June I started noticing Haven's left shoulder drop and by September it had dropped a good couple of inches and her walk was a bit twisty.  So I called her Endocrine doctor - which to my surprise had retired since we saw her just 3 1/2 months ago.  So now she's getting injections and walking weird with no doctor to follow up with.  So I started calling all of her other doctors to find out what's going on and to start making appointments with them.  It's October - we still don't have an Endocrine doctor BTW!

Last week Haven met with her Immunology doctor and we went through all of her lab work and refilled IVIG for the next year.  But I brought up the shoulder.  She ordered an X-ray and instantly I knew what was up.

I snuck a photo of the X-ray.  We received a call confirming what I saw.  In the past 8 months Haven has developed scoliosis and it's actually pretty severe with a 47 degree curve.

Next up was Oncology on Friday to do another CT Scan of the area we looked at last January.  Now this I figured would be a waste of time but it's better to get it done and see what's going on inside this girl.

BAM ---- it's a tumor and it's grown quite fast in 8 months.  Immediately we are referred to a surgeon and went over the scan with him.  They do not believe it's another "blastoma" but he is concerned it could now be Lymphoma Cancer.  Due to Haven's being at an increased risk of infection she will not be doing the major surgery to remove it.  However, we will be going in to surgery for a biopsy on Oct. 29th.  That will be sent to Pathology to confirm what it is.

new tumor is circled

Orthopedic Surgeons will be seeing Haven on Nov. 3rd to review her back and options with everything else going on.

While doing all of this her doctors will be meeting with a specialist in Cincinnati at the Children's Hospital on the possibility of Gastric By-pass surgery.  The doctor in Cincinnati is the one who devised the procedure for extremely high risk children with diseases - especially of the Hypothalamus.  But she must be reviewed to see if she can handle this.

It's a lot and that's not even all of it but that's been our first 3 days in October.