Another High Dose Treatment

Well we had hoped it wouldn't happen but then again we don't know anything about this horrible syndrome.

I am going to describe what we did this summer with Haven's immune system in terms of a flower - as this is the best way the doctor explained it to us.

This summer we did a High Dose treatment of Cyclophosphamide - which is an extremely strong chemotherapy. This was used to destroy her immune system in hopes of rebuilding a new one with new cells that had no memory of ROHHAD or Neuroblastoma. We have been watching and monitoring Haven since then with any changes positive or negative.

She has been slowly progressing in the right direction - her pottying is awesome, she even wakes up out of sleep to go potty now. Her personality is so much more animated and she is talking to everyone. She loves to play now and wants to do so much more. We are completely off the blood pressure medication.

BUT all of that is stuff that happened later in the disease. The areas of the syndrome that happened around age 2 have not been affected by the Hi CY. So maybe it's a sign that if you catch it soon enough you can reverse the affects of ROHHAD - wait too long and you get screwed.

Thankfully our doctors don't like to sit and wait for the next bad thing to happen and even though it makes us crazy we know what they're thinking.

What didn't change on Haven was the weight gain, eating, drinking, sweating, and sleeping. ALL of this began surfacing around age 2 years old and was in full force by age 3. These are the items that have been with her the longest.

I can't begin to explain the immune system.....it's an amazing system. There are so many areas of the immune system. So I will explain it to you like it was explained to us.

Imagine a flower.........now spray a chemical at the root and you can see over time it slowly dies.......now you no longer have a flower but you still have small remains of what was originally there. Now you need to go back and spray down the remains to destroy all of it.

This is Haven's immune system. We destroyed the "root" of the immune system and now we need to go back in and destroy the "petals". Get every bit of remaining original cells possible before it's too late and too irreversible.

On Friday morning, Kris and I will be going in to the Oncology office for a formal conference to review the new treatment and go over all possible side affects (pretty much everything you don't want to hear about) and sign the consent forms.

Once we know when this will start we will update more. Thank you everyone for always praying and thinking of Haven. Love to all

Maryland Renaissance Festival

Last Friday while Kris and Haven were in clinic Kris asked the doctor if it would be ok for Haven to go to the Renaissance Festival - she loves going every year. Her doctor gave us the ok as long as we had hand sanitizer, sunscreen, and we didn't let any touch or hug her. Easy rules!!!!

Haven had a blast. Grandma/Grandpa B-Honey, Aunt Katie, and Baby Stryder came along too. Here are a few photos from the day!

Haven wanted to go as a gypsy. My friend Emily helped with getting her some jewelry. Isn't shee beautiful!

Stryder and Haven......he wasn't in to taking pictures today!

Aunt Katie and Stryder doing bubbles!

Grandma B-Honey and Haven taking a break in the shade. It was a beautiful day. We had a lot of fun!

See that eyebrow....it's a warning that I better stop taking photos. She was tired of posing! :)But what are mom's for if they don't irritate you!

Kris and Haven watching a sword swallowing show. Her favorite is all of the shows. She sits there for hours watching them.

Katie and Stryder - still won't look at the camera!

Haven getting her annual renaissance tattoo!

And here is our beautiful gypsy!

Friday updates

Haven did great at clinic on Friday. Kris said she was perfect with her port and Nurse Katie is back from a very long vacation and was able to access Haven with no issues.

Haven always does great the doctor. Her levels were a bit low so she is scheduled to have IVIG next Friday. Which usually takes about 6 hours to administer.

Kris talked to her doctor for a little bit. He told her Haven would not be allowed to go to school for at least another year. So we are in the final stages of setting her up with home school through the county. I haven't talked to any one from the school so I'm guessing they would come to our house. Especially since she can't really be around any kids right now. Once I have more info I'll update on that.

The doctors also got all our paperwork in to Make a Wish and Childlife has been working with them. I received a phone call that they will be coming to visit Haven on October 10th! So she has been reviewing what she wants for her wish. I just hope she isn't too nervous to talk to them.

Endocrine

We met with Endocrine on Monday. I was concerned about this meeting - this would've been one to cause arguments. But instead we received happy news!!!!

Haven is growing - however slow - but she is growing. She is in the 5th percentile right now and showing signs of continued growth. The doctor was pretty happy with that. I was concerned we would have to start giving her growth hormone shots as this is what was said in May prior to Hi CY. But since then she has grown almost an inch!

He also stated with her growing and growth hormone levels at least not below normal she did not have to do the cortisol testing right now. He would put a request in to Oncology to have both growth hormones checked in December during labs.

So we are very happy and excited we do not have to give her a shot 6 days a week! :)

Flu Shot!!!

I have NEVER had a flu shot in my life that I remember as an adult....but I got one on Friday while at the doctor.

As required by our Oncologist: ANYONE around Haven is required to have the flu shot or they can not be around her. This includes us and grandparents and any other family members. It can not be the nasal mist - it must be the actual shot. Since she can not get the shot we are required.

Well IT HURTS! I couldn't use my right arm until today. AND in October we have to go back to get the H1N1 shot....uuuugggg.....I'm so not a fan of needles.

So just a note if you plan to see Haven you will be required to get the flu shot first and the H1N1 shot in October.

Haven Update

Preparing to access the port!

This time we were ready and put Haven's numbing lotion on her port about 1 hour before it was accessed. Haven never used to use the lotion but now she is feeling some pain and really wants the lotion.

Kris and I both went to this appointment as it had been about 3 weeks since seeing her doctor. Haven had been seeing available doctors during that time and we don't usually go in to specifics with them.

Our concerns were her blood pressure, sweating, and eating. The doctor pulled up all of Haven's blood pressure stats since April. After reviewing them we decided that it isn't her BP that is making her sweat. All of her stats have remained about the same. So what is it? We don't know. It could be something to do with ROHHAD. Maybe the symptom subsided for 2 years and then decided to come back. Who knows. Now I am required to take her temp when she has the sweating and when she says she's cold to rule out any fevers. If her temp remains constant then we will venture more in to this side of ROHHAD.

Sleep walking - although Haven has had some major sleep walking issues we noted that it was both nights that we gave her Benadryl for mosquito bites. Doctor confirmed that since Haven has a tendency to sleep walk the Benadryl could amplify it. She only did it those two nights so we will cease the use of Benadryl.

Eating - this is the main part that has not been affected by the Cytoxin yet. BUT as the doctor said yesterday - all of them were pretty disappointed after Hi CY because they saw no results. It took about 2 months of having the Hi CY in her body before she was back to being potty trained and having a completely different personality.

Since Haven is the first to undergo a chemotherapy treatment for ROHHAD there is no map to follow as to when certain things will be affected. Haven is creating this map. We discussed possibly another chemotherapy treatment but since it seems that Hi CY is slowly reversing some affects of ROHHAD we are going to wait a bit to see if anything else reverses on it's own.

Habitat for Humanity

So....after 2 weeks of night and day work with my dad to finish painting his house and laying hard wood floors we are close to finished. My dad and I have been working on the weekends from 9am until 11pm....my dad worked one night until almost 1am. I snapped photos instead of working! Photos of mom and dad's house soon......

So since I'm a pro at fixing other people's houses I volunteered with a bunch of the girls from work for Habitat for Humanity. We headed out yesterday to Baltimore and met up with the HFH people. We started working around 9am and ended around 4pm. I believe there were 12 of us in the house. We painted ALL DAY - the house is 3 stories (not including basement) and 5 bedrooms!

Here are some great photos of the day.

Emily before really getting in to the painting process......I can tell because she isn't covered in paint yet!

Amanda hitting the walls on the 2nd floor

Kelly and Heather tackling the 3rd floor bedroom closet! These were our ceiling people!

Another ceiling....Heather was punished all day with high ceilings. Do you even know how many ceilings are in a 3 story house!!!!! LOTS AND LOTS

Moving a wall......this was interesting...

The final touches! Anne and Heather give our work two big thumbs up!! Way to go girls!

A few concerns

Well Miss Haven is pretty well.....we've been monitoring her blood pressure a lot lately as she has started her sweating issues again. This has been slowly getting worse each week. She is back to sitting on the couch in air condition pouring sweat. She doesn't have to do anything to start sweating. She'll wake up at night completely soaked in sweat. So after voicing our concerns to random doctors at Oncology and getting no where with it I am very happy to say that tomorrow her normal doctor is back from Isreal. It was a lot of work with the clinic for us to get in to see him tomorrow but after a few phone calls we will be there at 8:30 am.

She is also having some eating issues and extreme sleep walking issues that will be discussed. I also don't know if any of the nurses followed up on Pulmonary. So I will ask about that. Her Orthopedic appointment is next Tuesday.

Hopefully we will have some updates tomorrow but our major concern is her blood pressure right now.

Few updates

We're mostly waiting for her doctors return from Isreal. But I did talk
with her Pulmonary doctor about her sleep study. He was overall happy
with it but wants to get her in his office. He needs a note from
Oncology that she can come in.

Overall she slept for 6 hours with many times waking up. Her CO2 level
is now at 50....was 49 about 4 months ago. No seizure activity
recorded. She has pauses in her breathing of about 7 seconds every
hour. Her O2 stayed around 95 during sleep.

She had a major sleep walking episode this morning. We thought she was
awake in the living room but she came back to tell me there was a
monster and had to get back in bed. She was clearly asleep wandering the
house. We haven't had this in a long time.

She also has a huge rash on her side that we can't figure out. We have
done Benadryl but it was pussing yesterday. Today looks a bit better.
We're just watching it right now.

Anyway, I don't have much until I discuss some things with her doctor on
Friday.

--misty