Neuroblastoma Tumor

MRI results came back today - Kris reviewed them with Haven's doctor and EVERYTHING IS GREAT!

The tumor that still remains has not grown since last May so we will continue to focus on ROHHAD and monitor the cancer.

Thank you to everyone thinking about Haven! She is currently in chemo at the hospital. They have been there since 8am and she should be coming home today around 5pm - as long as it all goes well.

Love to all

Haven's Updated Schedule

Well while we are preparing for Haven's 5th birthday tomorrow I thought I'd stop and share a few schedule updates. I am probably overly stressed....but I feel like a crazy woman! I have a million things to share with everyone but very little energy to type it out! I'm so happy my friends are able to come to Haven's birthday tomorrow - as she does not have any friends her age around here.

Here are the updates:

Levels have been great the last 3 visits to Oncology. So for right now we will stay on the same dose two times a day.

We leave for Disney next Tuesday, January 27, evening so Haven will have another level check on Tuesday morning

Audiology testing on Tuesday morning

Friday, January 30, we will go to a hospital in FL to have Haven's levels checked (chemo doesn't take a vacation)

Back at Johns Hopkins on February 4th for another level check

February 12th we will meet the Orthopedic Surgeon that will perform the surgery on Haven's back. He will exam the tumor on her shoulder blade and discuss with us how they will go about removing it.

March we will have another sleep study

March 26 we will have surgery on both eyes

March we will test Haven's blood gas levels and meet with Pulmonology again. This seems easy but when we found out today how they do it we decided she needed to be put to sleep.

I will get more info to everyone as soon as I can. Right now I am again covered in hives - I love it! Every 3 doctor phone calls I break out in to hives. It's amazing. Well I must get back to work on the house.

Love to all
m

Long time no post!!!!

Check out her cool socks! She wanted some so bad she stole mine!

Well it's been a few weeks, as my aunt has reminded me! But Haven has been sick off and on since having chemo a couple of weeks ago. For some reason this one hit her bad that even after 2 weeks she has still been throwing up or very exhausted. So far it's been 5 days of no sickness.

She has 3 toes that are infected. So Kris has been cleaning her toes every morning and night with peroxide and trying to get the infection out. She was on Amoxicillin for 10 days but the toes are still swollen. I have to contact the doctor tomorrow. Kris bought her one of those foot baths so we used that tonight. It really relaxed her.

We're still taking the medicine for the bone thrush in her mouth - trying to keep that from traveling down her throat. It can turn in to a yeast infection which is bad stuff. Now that she has had no immune system for a few months we can tell with how easy she can get infections.

Some very very good news finally - her last MRI showed the tumor on her spine has shrunk by .2 mm. I know it's not much but it hasn't grown!!! So we can celebrate a little.

The mass on her back is muscle. Just growing funky from steroids and the doctors are still unsure how that happened. Her back hurts her quite a bit so we keep her surrounded with pillows at night and she sleeps with her dad every night.

If she's not sick then I probably have a headache. Last week was horrible. I had a headache for 5 days straight. The medicine I was prescribed is no longer on the market and so far I'm unable to get anything prescribed. So I have been living on Percocet almost every night and I sleep on the couch. Since sleeping on the couch for the past 5 days I have had no headaches. I know it's weird...but so am I. My mom gave me a contoured pillow for my neck and it seems to be working.

Last flower

This last weekend we mowed the grass and pulled weeds. Haven helps by watering the flowers and telling me where I didn't mow yet. Being sick for so long I realized on Friday that I hadn't mowed the grass in over 6 weeks and the gardens hadn't even been touched! It looked like a jungle out there. Before the headaches I was religious about cutting the grass and watering flowers. So I yanked everything out...no flowers left and the grass is cut.

While pulling weeds Haven and I found a cute little Praying Mantis.

Then one of the days she got in to my purse and thought it was chapstick. I let her put it on and it was over an hour before she realized it wasn't chapstick. Kris and I had a hard time trying not to laugh!!

Haven and Elsie. She picked out a yellow Care Bear for Elsie. Yes she had to wear her bunny ears.

Helping with presents

Then this past Saturday Haven and I were invited to Elsie's birthday party. She turned one. Her mom is one of my friends at work. We went an hour early so she wouldn't be crowded around all the kids and people. Haven had a great time and didn't want to leave. But people were starting to arrive and I wanted to get her home.

Thursday evening we will be heading to Virginia to see Grandma and Grandpa for the weekend. Haven has big plans of tea parties and baking muffins and cakes. I'm sure she will have a blast. I'm looking forward to a short break from reality!

My brother is coming home sometime in September. Not sure how long but it will be good to see him before he's sent back to Iraq. My mom heads to Korea on September 1st for 3 months. My dad has plans of me painting his house and fixing it up. Lucky me. Haven and I will pretty much be living there those 3 months I'm sure.