Thursday, June 29, 2017

Spinal Fusion

We finally decided to have the Spinal Fusion.  Haven needed to have her spine fused from C3 - L4.  She received two Titanium rods (one on each side of the spine) and a bunch of bolts.  Along with bone grafts.  This was to help to sharp curves in her spine caused by growth hormone injections she had been taking for a few years.

No matter what surgery Haven has she always spends a few days in ICU.  It's just expected.  Most children who have a spinal fusion are out of the hospital within 3 - 4 days.  Haven spent about 7 days at the hospital.  On the 2nd day after surgery they decided Haven should climb some stairs.  She doesn't do stairs very well without surgery - so I'm not sure why they wanted her to do it after having surgery.  I had only left the room for 20 minutes when they decided this would be the best time to do it.  Well she fell on the 2nd step - this split the incision in her back open.

As you can see in this photo - the incision popped open in a few spots.  It was only being held together with steristrips.  They could only keep the blood stopped for a few seconds at a time and steristrips wouldn't stick.  So within the 20 minutes I was gone - she feel, split her back opened, bled like crazy, and.....

received numerous staples.  When I came back up from the cafeteria with breakfast Haven was so looped up on medication and slurring words telling me she had her back stapled. I kept telling her she didn't and she finally rolled over to show me. I freaked out and called all the nurses in and started screaming at people.  I couldn't believe they would do this and not even call me.  We got her out of the hospital the next day and had Physical Therapy start working with her at our house.

A few weeks later I took her back in to have the staples removed.  She wanted me to photo every staple taken out and even video it so she could make sure the nurse knew what she was doing.  Haven is quite particular when it comes to medical procedures.

The nurse took great care in removed Haven's staples.  I was very surprised at how well I handled it.  Haven has a very very high tolerance of pain due to ROHHAD.  I was probably feeling more pain than she was just from watching.

Grandma and grandpa came out to help with Haven and work with her in getting back on her feet.  They were great help with the PT guy and gal.  They are always amazing at having dinners and the kids love having them over.  Oh and Bella too.  She has to be in the photos.

After Gma and Gpa Fowler left we flew Grandma Cook in from Virginia for a week.  She is amazing at getting the kids to sit and have tea time.  I can't get them to sit at a table for anything.  These kids love their grandparents.

Haven also had her cath-o-port replaced at the same time she had the spinal fusion.  We try to consolidate surgeries when we do one.  We go around to all of her doctors and ask if anyone would like to tag on to labs or surgeries - this helps to do one round of anesthesia since ROHHAD does not play nice with anesthesia.  She had her original port put in at age 4 when she was originally diagnosed at Johns Hopkins.  So it was replaced after almost 10 years.

 All that mess in the above pictures - after a few months she was finally starting to heal.  Without an immune system it takes her a very very long time.

Finally the x-rays to see what's going on inside.  Rods and bolts.  My Terminator!

Comparison.  The left is the new spine (Terminator Spine) and the right is the old spine.  WOW.  Such a difference.  And her Cpap machine has been dropped from a level 14 to a level 6.  She breathes so much better now.  She sleeps so much better.  It's been amazing for her.  

Looking back now - a year later - I'm happy we did it.  It was a long recovery but she has really gained a lot having done the surgery. The surgeon was really amazing.

Sleep study before Spine Surgery

Before we could have the surgery on her spine we had to have a sleep study to make sure she was completely ready for surgery and she could handle being put under.  Of course getting ready for a sleep study is always a major process.

So it's been years

So it's been a while since I updated this thing.  Since October 2015 Haven did have surgery.  She had surgery to removed the tumor in her abdomen.   We ultimately found out that it was not another Neuroblastoma tumor - which made us extremely happy.  We did find out that her reproductive organs had somehow floated up out of place and that is actually what had the tumor on it.  So the tumor was removed and she made a nice recovery from that.  We were very lucky on this one.

Wednesday, October 21, 2015

Bone Age Scan

Today Haven went to Endocrine - which was great because we haven't had an Endo doctor in a few months since her last one retired.  We went through all of her lab results and discussed the tumor in the stomach and her upcoming meeting with Orthopedics for her spine.

All of her labs look great. iGg is at 722 and her diabetes test came back no where near having diabetes.

With that we had to do a bone age X-ray to assess her bone age vs. physical age.  I just received the phone call from her doctor and Haven is 11 1/2 years old but her bones are aged 12 1/2 years old.  Not too bad.  He stated at most she will probably be 5 feet tall and hopefully push to 5' 2".  Nothing near daddy's height but closer to mom.

Next up will be a day at IVIG before we head in to any more doctor appointments.

Saturday, October 3, 2015


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.

Friday, March 7, 2014


I spoke with pre-registration for Haven's surgery today.  We are ready to go!  First I have to say I don't remember paying $100 for every surgery before……anyway

Haven is ready for surgery.  She has been informed that she cannot have anything to eat after midnight and nothing to drink after 7:15am.  She has to be at the hospital by 8:45am to meet with anesthesia and her surgeon.

They have it on her paperwork that she is allergic to Ketamine and no clear tape is to be used due to making her skin blister.

Her surgery will begin around 10:20 am.  Her surgery is normally around 1 hour.  But they told me today that with her high risks of anesthesia and respiratory issues and going through surgery in general she will probably be around 2 to 2 1/2 hours.

She will be immediately admitted to the PICU following surgery.  We are to bring her c-pap mask and they will make sure she is hooked up on the machine with her oxygen.  I did explain to them that one of my biggest concerns is the fact that her throat is going to be cut up and she is going to have a mask forcing air in to her throat.  I don't want her gagging on blood.  Again this is one of the reasons she will be in the PICU.  They will monitor everything.

We aren't sure when she will be coming home yet - it depends on how well she does with the mask and being able to drink fluids.  She doesn't have an immune system so she will take twice as long to recover than a normal person.  Heck, it takes her 30 days to recover from a mosquito bite!  But we have grandma here to take care of Miss Haven and be with her at the hospital.  So she will be taken care of completely.

I will update everyone on Monday as we finish surgery and settle into recovery.  Thank you to all of you who have been sending your prayers to Haven.  She does check her blog and you can leave your comments for her to read.

Thursday, March 6, 2014

Haven's Timeline

Below is a short story about Haven's life after being diagnosed with cancer and a rare syndrome called ROHHAD.

When I was 2 I was a normal healthy girl.  I liked to help my dad work on mountain bikes.

Then in one month I gained 25 pounds and my mom took me to the doctor to get an MRI.  Which is a picture of my insides.  They took a picture of my brain.  Which was fine.

After a few more months I gained more weight and they did another MRI.

The only place they could get a needle in me was my ankle.

Finally my 3rd birthday and I got a Chinchilla.

After my 3rd birthday my mom and dad noticed my eye turned out.  Once again I was sent to MRI but they didn't find anything.  Then my mom decided we were going to move to Maryland because the doctors in California were taking too long.

About 15 days after moving to Maryland I had a 45 minute seizure.  I was sent to Johns Hopkins hospital by ambulance.  They did a lot of tests to find out what was wrong with me.

This was me giving myself gas so I could do another MRI.  This time they were going to check my entire body instead of just my head.

Here I am relaxing after the MRI.

During Christmas break in 2007 mom and dad received a phone call from my Endocrine doctor at Johns Hopkins dying I had Neuroblastoma Cancer and ROHHAD Syndrome.  

Mom convinced the doctors to let me have my 4th birthday before I had surgery to remove the tumor that was in my stomach.

Here I am walking in to surgery with my dad.

I spent about a week in the PICU.  Which is an intensive care unit for children.

I had to breathe in to this multiple times a day to try to clear my lungs.

This is an x-ray showing my new port in my chest and of course my spine and ribs.

This was me about 2 1/2 weeks after surgery and finally at home

I have a high heart rate so I have to meet with a special heart doctor.  Sometimes I have to wear a heart monitor.

These are the probes that monitor my heart.

This is a special bone age scan.  It helps the growth doctors judge if you are growing at the right speed. My syndrome stops the growing.

When I was first diagnosed I had to take a lot of medicine twice a day.  This was my normal morning medicine and then I would take the same thing at night.  The red was my blood pressure medication.  I don't have to take these anymore.

Another surgery.  This one was to fix my eyes.

Here I am walking in to eye surgery with my dad.

My mom had a cold and because I don't have an immune system to fight infection she had to wear a mask to see me.  I couldn't have my eyes open so she had to feed me.

Here I am getting chemo.  This was one of my favorite nurses, Katie.

Here are the clowns.  They love to come around when you are getting chemo to cheer you up.

Well it's time for a couple more surgeries - except this time I won't be going home.  I had to live in the hospital for 6 months after this.  I had to have a lot of chemo.

Here I am in recovery….my mom bought me a stuffed animal schnauzer.

I couldn't walk for a while.  They had to remove my toe nails because the chemo kept making them infected.

I like to sleep walk so they would be me in a bed that could zip close at night.

Hanging out at the hospital for 6 months is not fun.

This was my favorite nurse.  She was my night nurse - her name was Patel.  She was with me for the entire 6 months.

When we were finally able to leave the hospital they let us out for the day.  We got to go on a boat ride around the harbor.

When I finally made it home I had received so many get well cards from around the world because my mom had started this blog.  She put the cards up all over the house for me to see when I walked in the door.

We had to be trained at home to flush my 2nd port.  I am really allergic to tape so this was a very bad port for me and we had to remove it after 3 weeks.

Here I am meeting with my anesthesiologist to remove the bad port.  He let me sign my paperwork.

Going in to surgery again with my dad.

Yay…it's out!!!!  Dr. Price let me keep it too….boy was it stinky!

Here is my other port when it's accessed.

I started Kindergarten while doing chemo.  I had to do it through homeschool.  I did most of it at the hospital.  They had teachers come to the house to be with me.

When I was released from the hospital my mom and dad said I could have a dog.  I wanted a baby schnauzer.  I picked out my dog - Deezy.

A few months after I got out of the hospital Make-A-Wish contacted my mom and gave me a HUGE wish.  I chose to go to Disney World in Florida.  We went for a week and had so much fun.  These were my wish granters.

Then in 2010 we were contacted by the Oprah Winfrey network to do a TV show called Mystery Diagnosis.  We had TV cameras follow us around for 3 days.  We filmed at our house, the hospital, and at a studio.  I was interviewed at the studio.

After doing the TV show we were contacted by the local radio station to do an interview the hospital radiothon.

I got to meet Jojo and Reagon of Mix 106.5 and we did a full radio interview at the studio.  It was a lot of fun and we got to share my story and information about my syndrome and cancer.

I began doing physical therapy to help my muscles and bones get stronger.  Sitting in a hospital for months at a time can make you weak.

Here I am getting my normal blood labs.  I have these done every 4 weeks.

In 2011 we moved from Maryland to Utah.  My mom and dad really wanted to live in St. George.  We would come up to SLC to Primary Childrens for my check ups.

So for two years I have gotten my labs done every 4 weeks and I get chemo every 8 weeks.  

This past year my mom decided it was time to get another sleep study done.  So on December 21 we went to Primary and had a complete study done.  It takes about an hour to get all the wires on.

This is the computer screen when sleeping.

On my birthday I had to get my chemo.  So we went up to McKay Dee for the day.  This is my favorite nurse Danielle.  We celebrated my birthday together.

I really like this hospital.  I love that they have a bed for me to relax in.

In February (a few weeks ago) I ended up at the hospital feeling sick.  They did a chest x-ray.

As you can see this one shows that I had pneumonia.

They admitted me to the hospital for a week.  This doctor was doing an EKG on my heart.

Here we had to go down to get an Echo done on my heart.

While in the hospital I was able to get my chemo and get healthy.  I had to stay on oxygen while sleeping.

While at Primary I was interviewed for the radiothon again for the hospital.

When we got home that evening my reparatory therapist came over to show me how to use my new machines at home.

Now I sleep with oxygen (blue thing), a pulse ox machine (to watch my oxygen), and a c-pap (to help me breathe)

We went back in to my doctor to get fitted for another mask…..I probably tried on 30 masks that day!

Even though I have to be in hospitals a lot and this is the first time I've been able to be at a school I have a lot of fun with my time at home.  I love to hang out with my brother and sister.  We like to go out and do fun things.  They like to drive me crazy too.

I will be having surgery on Monday.  Because I still do not have an immune system it will take me a little longer to heal than normal.  I can't wait to get back to school and see everyone.