Sunday, June 27, 2010

1 Year Anniversary

The last 365 days have been the most insane in our life. Haven has had many ups and downs and spent half her year in isolation.

We are happy to say a year later I never would've expected how much she could change!

June 26, 2009 - Haven has surgery to receive her 2nd port line (6th surgery) and is admitted in to the isolation wing of the in-patient pediatric oncology wing of Hopkins.

June 27, 2009 - Haven begins the first dose of Hi CY treatment. We spend many months of agonizing tape allergic reactions. We definitely didn't enjoy the 2nd port line and really didn't like flushing and cleaning it daily. Haven made it through with a smile.
August 2009 - Haven signs her paperwork with her anesthesiologist to undergo surgery again - this time to remove the 2nd port line!

October 2009 - Haven begins a high dose round of Dexamethasone. Though we thought losing her hair would completely upset her she actually loved her "littles".

Today - one year later - we celebrated at Bob Evan's with Chocolate pancakes. Minus front tooth! :) Oh and lots of curly cues for hair!

Her cousins from CA arrived and she played all day with Kristanna and Selena. She was so excited and actually wanted to go to Grandma's and play.

I'm telling you they played all day - from 11 am until 8:15 pm. Haven has changed so much over the past year and after seeing the results I wouldn't make a change to our decision - knowing what I know now! She is awesome!

Not to mention we also adopted baby Deez last year after she was released from the hospital. They have become best friends. :)

Tuesday, June 22, 2010


The picture says it all.....

Wednesday, June 16, 2010

Mason Byrom Day

St. Louis County Executive Charles Dooley has officially declared June 26, 2010 "Mason Byrom Day!" Please join us at Blackburn Park in Webster Groves from 4-9pm for a picnic/fundraiser for Mason! There will be food, fun, entertainment , and a raffle with great prizes !!

I'm so excited about this! Mason is an awesome boy and so cheerful - We just love him. I urge you if you are in the St. Louis area to go out to the park and just meet him.

Saturday, June 12, 2010

Toothless in Maryland!!!

Well...let me start by saying Haven has had 4 loose teeth for about a month now. She lost her first one eating corn on the cob but now that she can't have corn we haven't been able to find anything to eat to lose them.

So my mom made me this wonderful homemade chicken soup for my wonderful flu. Miss Haven decided she wanted some soup - after 3 bites she stops and stares at me and then takes off running to her room screaming "I have to check my tooth". Kris and I kinda looked at each other - Haven often goes to her room to check herself out. Then we hear screaming from the bedroom "Where is it?" over and over. We ran back there and she'd lost her tooth. I scoured the living room floor and even drained and sifted through her soup. Our guess is that she ate the tooth!

Well the tooth fairy never came because Haven didn't leave her a note. So tonight Lauren was visiting and talking about when she tied a string to a door and her dad pulled her tooth out. Haven came up with an idea - let's tie one of her teeth to dad's RC car and yank it out! So Lauren's visit got very exciting!

I tied up her bottom tooth with some string.

We attached it to the car. Haven wanted to go slow but I gave Kris the "you better do it quick" look and bam.......

the tooth was out! The above photo was printed for the tooth fairy with a note explaining that she'd actually lost two teeth and should get two gifts...but that the first one was in her belly.

It took me about 45 minutes but I found the tooth about 20 feet away outside on the deck! It is now packed up in her velvet tooth bag next to her head with the photo and note for the tooth fairy!

Haven was super excited to see Lauren tonight. She hasn't seen her since her birthday in January. But a big surprise to Haven is that dad is going to have Lauren come over this summer a few days a week to spend some time with Haven while she is out of school and before Lauren moves to Hawaii in August.

Ok...well everyone needs to get to bed so the fairy can come! :) Love to baby girl is awesome!

Thursday, June 10, 2010

Kindergarten Graduation!!!

Well....although I was hit with a really bad case of the summertime flu....I took enough medication to make it through Haven's graduation! I wouldn't miss it for anything! She did amazing!!!

Miss Haven as we headed out to her school for graduation from Kindergarten!

Standing in line with her class to go on stage to get her diploma and award.

Miss Haven up on stage with the Principal getting her diploma. She did awesome! We are so proud of her.

Holding her diploma with a huge smile on her face!!!!

She is so proud of herself! I'm amazed she was able to catch up with the class with only 2 hours a day for 2 1/2 months.

They sang 3 songs at graduation --- all by using sign language! I was sooooo impressed! I didn't think Haven remembered much sign language but she did all 3 songs!

Our baby. She won the award for Art Lover.....she is done with Kindergarten and now we'll prepare for 1st grade! She will get to see Lauren on Sunday and I'm sure will tell her all about it.

I'm going to go back to taking Thera-flu! :)


Monday, June 7, 2010

Prayers for Denika Bailey

This is our friend Denika. I met her and her mom last October after being released from isolation at Hopkins. Denika was diagnosed with Ganglioneuroblastoma Cancer and had tumor in her abdomen like our beautiful Haven. Then she was diagnosed with ROHHAD Syndrome.

Denika traveled from her home in Newfoundland to Sick Kids in Toronto to meet with doctors there to find out what they could do to help. I received an email from a Ped. Endocrinologist in Toronto as to what Haven was doing and her treatments and how she was reacting. I gave a brief story and sent her our doctor's info to contact them for more information.

About 24 hours later I received an email from our doctor wanting my ok to talk to her doctors and permission to review Haven's treatments with them. Of course I said yes. Soon Denika was headed back home and began IVIG treatments. About 2 months later her mom, Trina, contacted me saying Denika would soon start the low dose Cytoxan treatments. She would receive chemo every 4 weeks for 6 months. This is what we did to start as well.

Denika was just released from the hospital about a week or so ago and was sent home with oxygen. Her doctors also found another tumor in her chest cavity (like the original) and a tumor on the Pituitary Gland (which we did a MRI for).

Denika is having a trying time right now and her family needs all the happy thoughts they can. Her mother has started a Prayers for Denika Bailey page on Facebook. She needs all the support she can get. Please click on Denika's picture and join her page.

We love you Denika and send all our love to you!