Saturday, January 31, 2009
I received a phone call that evening. Haven's levels are too high again. So we have adjusted her chemo to a lower dose until we can get back home and back to Johns Hopkins!
Thank you everyone at Arnold Palmer for helping my baby! :) ooohhhh....I mean big girl! We were all corrected many times that she is no longer a baby - she's 5!
Friday, January 30, 2009
Flight was great - Haven flies very well. This is her 7th time flying and it was the shortest distance. We sat in the very front of the plane and of course the Southwest flight attendants were AWESOME. We don't like to bother people with all our special needs but they just kept taking care of Haven. Bringing her pillows and making sure she was comfortable and not scared. Just kept talking to her. It was very nice.
One lesson I learned was to NEVER administer chemo while flying in a plane! This was a bad idea but it was 8pm and I was freaking that we were going to be late. Well I opened the bottle and BAM (as Haven would say) it flowed out all over me. My jeans were covered and stained black instantly and my hands were completely soaked....there was nothing left in the bottle at this point! I'm so happy it was only about 2ml of fluid. So I decided I'd wait until we landed to open the other bottle!
Then we took our bus to the resort and Haven was terrified. There were no seatbelts on the bus and she did not like that. She made her dad hold his arms across her like a seatbelt because she thought she was going to fall out.
We got to the hotel around 945pm and went to bed immediately. Our first day would be Magic Kingdom!! I'll put a few photos up here but everthing from the trip with be on her FLICKR account until Disney Vacation.
What's nice is having a 6 day hopper ticket and not worrying about getting to the park when it opens. So we ate breakfast in bed, we all sat around and thought good thoughts for Mason (he was having eye surgery today) and made it over to Disney by noon.
There are a lot of photos of Haven on her FLICKR site ---- CLICK HERE
Tuesday, January 27, 2009
I have packed - which is not an easy task with Haven. LOTS OF DIAPERS, packed all of her medication the way the airline told me to, and a lot of clothing for her. Haven's feet and legs are so swollen so we will be using a wheel chair while at the parks. As I'm sure she will be exhausted after about an hour of walking around.
It's supposed to be 85 degrees down there all week
We'll be going to Magic Kingdom, Epcot, Animal Kingdom, and Disney's Hollywood Studios. We'll be there for 6 days and we're gonna relax.
I'll be updating Haven's site with photos from the day. Should be a lot of fun. She is definitely excited and screaming constantly about it.
Kendall was unable to meet us there as she has mono....so we will miss her on this trip. I have my mom and dad checking the mail each day - Haven is worried that the mailman won't bring her all her cards if she's not home. So I have assured her that everyone will still write to her. :)
Talk to everyone soon - love to all!!!!
THANK YOU RIVERSIDE.......WE'LL SEND PHOTOS!
Saturday, January 24, 2009
Haven made the cake herself. I got up at 5am and went shopping to buy all the cake making equipment and mix. Since we don't bake we didn't even have pans or anything.
We made a beautiful Spongebob cake. The inside was purple and blue and the outside was pink and neon green. PERFECT. Tasted awesome...considering I haven't baked a cake in probably 15 or 20 years. I can't believe I'm old enough to say 15 or 20 years!!!!
Here are a few pics from the day.
Friday, January 23, 2009
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
Wednesday, January 21, 2009
Breakfast Pizza -- created by Haven (actually very very good)
Haven comes up with some crazy foods - 95% of them turn out awesome. A ROHHAD diet consists of:
The hardest thing is the sodium. No one really worries about sodium. Heck, one can of soup that's marketed towards kids at 1500 mg of sodium!!! We have Haven under 200 mg of sodium per day!!!
So we will highlight recipes that are perfect for a child with ROHHAD (or even simply overweight) and we will highlight certain foods that maybe seem weird but are awesomely nutritious.
Haven's ROHHAD Recipes -- coming soon!
MASON'S WEB SITE ---- IT'S FINALLY HERE!!!
J and Sandy Spencer - donation to Haven (I used to work with J in CA - you two are awesome)
Bruce and Angela Sweyd - sent Haven a huge box with the biggest doggie I've ever seen in it and make up and Tinkerbell color wonder.
Katie McCollam - sent Haven a beautiful picture of herself and her mom and a some recipes
Julie Horner, Jena Perkins, June Junko, Judy Poole (thank you for the mulitple cards and gifts), Pamela Foulis (Butterfly creations), See Wah Hong (for the encouraging words to mom and dad), Caring Hearts, The Starrs Mill High School, John and Lynn Polen, The Spangenbergs, Virginia Paccione, Matt/Shelley/Quinn, Jenn Alvino, Brenda (beautiful Camel picture!), Charlene Cousins, Audrey Griffis (beautiful butterfly art and Princess), Lee Hill (paining canvas).
The smiles you bring my daughter are AMAZING! THANK YOU
Tuesday, January 20, 2009
Dear Dirty Spokes, Addictive Cycles and Vassago,
All of you may or may not remember me. My name is Jeff Brooks. I rode in the Conyers event to raise money for the foundation started in my daughter Taylor's honor. All of you were gracious and donated your time, support, money and frames for raffles. The day was a giant success!
- delivered new patient diagnosis kits to the AFLAC Children's Cancer centers at Egleston, Scottish and the bone marrow transplant area.
- delivered holiday gift bags to Scottish Rite on Mothers Day, Fathers Day, 4th of July
- Given a Christmas party at all of the facilities above.
- AND COMMITTED to Sponsor a new fellow from Emory University to work in the AFLAC Children's Cancer group for Children's Healthcare of Atlanta.
I found the email below tonight as I was catching up on personal messages. I think you all will be touched. I plan to contact Seth and Linda and help them get started with this incredible project.
I would like first THANK EACH OF YOU for the success and the seed that has been planted. I would also like to ask each of you for your ideas on how we could take this idea of the Owen's national?
The Life Bike
My name is Seth Owen. My wife (Linda) and I are amateur cyclists. We have two children (Raegan 8 and Grant 5). I would like to take a moment to introduce myself and share with you a project I've started because of your family's story.
Along with 12 of my riding partners (Linda included), I entered the Dirty Spokes event in Conyers, GA. We had lots of friends and family out to support us. During our last transition, I told my wife she should enter the raffle for the Vassago frame. I didn't know anything about the foundation. I only knew that the $10 would benefit cancer research and heck we might win a frame. So she paid our $10. After the 6 hour event, we anxiously waited for the drawing.
The first name drawn was your name.
The second name drawn was your wife's.
The third name drawn was, you guessed it, my wife Linda.
I went home and read Taylor's story. To be perfectly honest with you, it made my heart ache and I cried. I pictured myself in your position and my own daughter's pictures on that web site and knew that we had to do something meaningful.
We thought we'd would sell the frame and donate the money to the Taylor Brooks Foundation but decided not to. We thought we could do more. So we talked about building the bike up with top of the line components, auction it on eBay and donate the sales price to the foundation but decided not to. We had to do more. With that said here's what we've done and are in the process of doing:
"The Life Bike" and it will go to every event we ride.
The objective is to keep the bike in constant motion for the duration of the race. After all, battle to cure cancer never ends.
Here's how it works:
We solicit donations from family and friends to sponsor the bike (not the rider) for a lap or the whole race (kind of like Walk America). If the lap is sponsored in memory of someone, that person's name gets painted on the bike. The first names on the bike are Taylor's and Linda's Mom.
We're focusing this as a sponsorship of the bike which represents the cause as opposed to sponsoring a person. The bike is black and white. Black is in memory of those we've lost and white represents life and hope.
We've not solicited any donations for parts or funding to build the bike. We're footing the bill for that. We are also not using donations for entry fees or any other race support. 100% of what we raise is to be donated.
The Bike: Vassago JabberWocky - Pearl White with black lettering
Wheel Set: Custom laced White Syncros DS28 rims laced to white Syncros FL hubs with 31 black spokes and one white spoke
Rims: White Rims signify the Circle of Life
Look for more info on the life bike coming soon here and on the Vassago web site!
Side View - about 4 inches high!
As we have been completely stressed out about EVERYTHING – medicines, doctor visits, upcoming surgeries, normal bills, day to day living, anything extra Haven needs, and co-pays ($25.00 EVERY DOCTOR VISIT - we go 3 times a week). My mom came to us and has offered to help pay for as much of Haven’s medical bills as she can. My job – organize all the bills. For this I HUGELY thank my mom – she has cashed out her stocks and is putting all of it toward Haven. I couldn’t ask for anything more….ever again!
THANK YOU OMMA!!!!!!
This is one day of chemo for Haven. One day - 6 hours!!! That's it. I don't know how many days we've been to in the past year........There definitely needs more funding for Childhood Cancer to help non-profit companies help families!
Monday, January 19, 2009
She wanted to wear her towel like I do after a shower
KNOXVILLE, Tenn. (WVLT) ---Hy-Vee Inc. is recalling bakery products with peanut butter distributed in seven states as they could potentially be contaminated with salmonella.
Hy-Vee Inc. is voluntarily recalling the following products made in its bakery departments because they contain peanut butter that has the potential to be contaminated with salmonella: Peanut Butter Cookies, Monster Cookies, Peanut Butter Reese's Pieces Cookies, Peanut Butter Chocolate Chip Cookies, Lunchbox Reese's Pieces Cookies, Lunchbox Peanut Butter Cookies, People Chow Party Mix and Assorted Truffle Fudge. All sell-by dates are included in this recall. The products are sold in various packaging and quantities and have a Hy-Vee price label attached. All items should be destroyed or returned to Hy-Vee for a full refund.
Perry's Ice Cream announced a voluntary recall of select ice cream products containing peanut butter because the products have the potential to be contaminated with salmonella.
McKee Foods Corporation announces voluntary nationwide recall of Little Debbie Peanut Butter Toasty and Peanut Butter Cheese Sandwich Crackers Because of Possible Health Risk .
These two sandwich cracker products were manufactured for McKee Foods by Kellogg Company.
On January 14, Kellogg Company announced a precautionary hold on several of its peanut butter sandwich crackers while FDA and other authorities investigated Peanut Corporation of America (PCA), one of Kellogg's peanut paste suppliers for these crackers. McKee Foods followed that action with a voluntary withdrawal of the two Little Debbie peanut butter sandwich crackers. PCA has now expanded their earlier recall to include peanut paste and peanut butter, prompting Kellogg to immediately announce a recall of certain cookie and cracker products. Accordingly, McKee Foods is announcing this recall of its two peanut butter sandwich crackers.
Saturday, January 17, 2009
Haven had a full day of chemo on Friday. Dad and Haven got in to the hospital around 7:45 am to get ready for Haven's 8:00am blood test for her chemo levels. Then immediately after that started the other chemo for the day. I heard that after they gave her the Benedryl she passed out for a while. Let me tell you, when we do all day chemo treatments at the hospital and Haven is just laying in the bed waiting for the bottle to empty (6 hours later) it can be a LONG day! So sleep is always welcomed......I always request it to be taken through the port instead of orally! It hits her faster and helps her sleep quicker. Plus throw a hot blanket on her (they have these heated like from the dryer at home) and she is OUT!
Kris met with Haven's Oncologist for quite a while in the morning. Then I got a call around 11am to let me know what they had discussed and if there was anything I needed to add or if I had questions. I had to work so I couldn't be there. I know Kris gets nervous going in by himself because I'm the one the keeps track of dates, surgeries, doctor appointments, and research of ROHHAD. So I sent him a text of a few key items that he needed to discuss.
Haven will be having another surgery planned. We're waiting to hear from her surgeon as to when he feels it should be. Her eye surgery is March 26. This other surgery will be for the massive lump on her back. No one knows what the lump is but it is bothering her a lot lately. So once I hear more about that I'll update everyone. We will also be meeting with an Orthopedic doctors for her back and starting physical therapy as she is having too many back pain issues.
I received a printout from the doctor of Haven's weight and height since last January. I wanted the comparison for my records from the past year. It also shows her blood pressure each week and temp. So this was very exciting to me! I'm easily excitable!
We are now required to do a daily log of any changes and anything we notice. So we can look back on the records in one month and decide if she should be off this chemo and put on something else.
Haven's chemo dose was increased on Friday and Haven and I will be at the ER at Johns Hopkins on Monday morning at 7:45am! Whew.....luckily I have the day off and don't really like sleeping in! :)
Love to all!
Friday, January 16, 2009
Haven with a Paula Deen autographed pictureHAVEN: She is at the hospital right now getting her levels checked and has a full day of chemo. They will be meeting with her doctor to discuss how everything is going. They will also be discussing possible back surgery for Haven, upcoming eye surgery, upcoming pulomonology appointment and anything we've noticed while on this daily chemo. Haven is currently sleeping about 4 hours a night with constant wake ups and major pottying problems. She has gained 4 lbs since the beginning of December and 2 lbs in just the past 12 days. I have been keeping Haven's FLICKR site updated with photos from years ago to now. We're also excited to have Haven featured on MAKE A CHILD SMILE for January. We're working on her birthday party for next weekend and then we're off to Disney for a week!
Mason and his dad on New Years Eve
MASON: I talk with his mom daily! He is doing pretty well. He was scheduled to see Dr. Weese-Mayer on January 12th but that fell through with insurance not accepting. ROHHAD is a rough syndrome - no one knows about it and insurances don't want to pay for something that isn't known about. Mason has been slightly congested and since he is on the ventilator whenever he sleeps there house can get crazy! I love the stories. Every time he coughs or sneezes his ventilator alarm goes off and everyone is immediately in his room. They are on the same schedule as we are...wake up about 4 to 5 times a night. Funny story: Mason was sleep walking about a week or so ago and they woke up with alarms going off and all this craziness. Mason remained connected to the ventilator and dragged it down the hallway with him. I could not stop laughing.....I know what we go through at night and I could imagine waking up to all that! We also found out that Mason is a huge fan of Minnie Mouse! :) His baby sister, Cameron, is always stealing his Minnie. PS: I'm pushing Julie to get a site up for Mason!!!
Sophia and her big sister
Josh and his two cousins
JOSHUA: As you know - just at the holidays Josh was headed to the hospital for some major testing and meeting with his Cardiologist. It seems as though Josh has developed a pretty major sinus infection that alerted the doctors to start a test for Cystic Fibrosis. They don't believe he has CF but it's definitely best to rule it out - who knows what this syndrome brings with it. His Pulmonary tests showed more evidence of airway obstruction and he will now also use a steroid inhalent. Josh is on the ventilator 24 hours a day. He is allowed to take small breaks from the ventilator but he is watched closely. He has had a few high temperatures over the past week. We're constantly checking in on Vanessa's blog to make sure Josh is doing well and the entire family. They have some great photos up that are awesome. I love to see everyone.
NIKKI: I have not heard from Nikki's mom in Australia since right before the holidays. We hope to hear from her soon! Hope all is well down there and Nikki is home or on her way home.
Tuesday, January 13, 2009
A few notes:
Haven has surgery on both eyes on March 26th
Pulmonology is rescheduled for January 23rd
Haven is not in chemo today - it is rescheduled for Friday Jan 16 - after blood work
She will still have blood work done tomorrow morning to check her levels
Monday, January 12, 2009
If you click the link above or HERE you will see Miss Haven. She is absolutely adorable!
Sunday, January 11, 2009
Haven is now scheduled to be in the hospital to have her levels checked three times a week - Monday, Wednesday, and Friday. She still takes the chemo two times a day (8am and 8pm) with her other medication. We just lowered the dose temporarily. Once she is stable they will again increase the dose.
Normal levels on this chemo (which I just found out on Friday) are at 150. Haven was at 300. So double the normal. I haven't listed the name of her chemo because it's too confusing when you read on it. Usually this chemo is given to bone marrow cancer patients or Leukemia patients. So it doesn't make sense to the normal person when they check Wikipedia or something. But we understand why she is on it and how they came to decide to use this one.
Bloodwork - Monday
Full day chemo - Tuesday
Bloodwork - Wednesday
Pulmonology - Thursday
Blood work/Dr. Paz-Priel - Friday
Kris will take Haven every day and I will meet with him on Thursday at the hospital. I have never met the Pulmonology doctor and have a list of questions for him.
Wednesday, January 7, 2009
Cortisol levels are great. Haven is producing Cortisol on her own which is AWESOME! We were a little worried about this but maybe this means we won’t need to do growth hormone shots in 09! It’s always a plus when Haven has good news. We hope to see her start growing now.
Bad news: Haven’s body wasn’t handling the new chemo very well. She had her levels checked today and I received an email from her doctor that they were way too high. So we were instructed to skip tonight’s dose of chemo and to only do half the dose tomorrow. She will go back to the doctor at 8 am on Friday to get her levels rechecked. We hope they level out or she may have to switch chemo treatments already.
I have been asking the doctors about her symptoms but I still have not gotten an answer on that. Since starting this new chemo last Wednesday she has not slept for more than 4 hours in a night. Her gums are always sore and I have been loading her up with bubble gum flavored Ambesol. She has been peeing like crazy and she is achy all over. We were a bit concerned this afternoon. Haven fell asleep around noon and could not wake up. Kris tried waking her up many times and she just couldn’t do it. He finally got her to get up around 5pm but Haven sleeping like that is very unusual. I was sure we’d be at the hospital but she seemed fine while I was home.
I’ll update again after her levels.
Kris did take some video yesterday of her sleeping – I guess it was pretty crazy. I haven’t looked at the videos yet but I’ll post them up.
Tuesday, January 6, 2009
Friends and Family
Date: January 24th
Time: 1:00 pm
Location: Our house
Family - Extra Birthday Bonus
Date: January 25th
Time: 11:3o am
Location: Chuck E Cheese
Why two birthdays? I want a birthday party at the house for all of Haven's friends and family to be able to visit and be relaxed and have room. Haven wants to go to Chuck E Cheese. So we have agreed to do it two days and she is happy with this arrangement. Haven has been begging and saving Chuck E Cheese coupons for 2 months - how can I say no?
I think after this year we might move her birthday to sometime in May. We have to pick a good date but having Kris birthday 2 weeks before Christmas and Haven's 3 weeks after Christmas is crazy! I definitely didn't do very well in planning! :)
Love to all
Sunday, January 4, 2009
We have so many people to thank for everything they have done for Haven this year. We want to thank everyone that has donated to her - everything is much appreciated. To everyone that sent her gifts and cards - THANK YOU. To Johns Hopkins Riverside - THANK YOU! Our Disney trip is right after Haven's birthday!
Over the break I RARELY looked at the computer (can you believe it) but here are a few donations that came in that we want to say THANKS!
Aunt Dottie and family - thank you for the donation
Rick Family - thank you for the donation
Stilwell Family - thank you for the donation
Shockey Family - thank you for the donation
Now back to your regularly scheduled program!
Love to all
Saturday, January 3, 2009
I have emailed NORD, ORD, GARD, and ORPHA regarding the syndrome ROHHAD. As none of these had a listing for ROHHAD and all of these are organizations for rare diseases. I would like to share an exciting email I received back from GARD today!
Summarized version of the French study on ROHHAD vs. ROHHADNET
Dear Ms. Fowler,
You recently submitted an online e-mail to the Genetic and Rare Diseases (GARD) Information Center about ROHHAD (rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation). You mentioned that your 4-year-old daughter has been diagnosed with ganglioneuroblastoma cancer and ROHHAD. After conducting research on your own and consulting with your daughter's physicians, you have come to find that there is very limited information available about this diagnosis. You wrote to us to request that we add ROHHAD to the ORD list of rare diseases.
We wish to thank you for bringing this condition to our attention and in response to your email, we have created an online question and answer page on this topic. If you'd like to view this information, we invite you to visit the links listed below.
Visit the link to view a Q&A about ROHHAD. CLICK HERE!!!
Visit the following link to view resources related to this condition. CLICK HERE!!!
THANK YOU FOR LISTENING!!!!