Gracie's 5th Birthday

Here is a picture of Gracie the day she was born.

Here is my princess 5 years later on her 5th birthday! Gracie wanted a Cinderella party and she chose this princess cake from Walmart. it was so cute and she loved it. It was sure easier on me too, not having to make it. :)

Gracie had some friends over for a party. It was her first time inviting friends over. Last year she wanted to, but in the end, she wan't feeling up to it. It was less than 2 weeks after her major surgery. I remember thinking last year that it might be her last birthday...How blessed and grateful we feel to have her so healthy and strong a year later!! I arranged a party through mylilprincessparty.com and the lady comes dressed as a princess and does all the games and activities. The kids had a ton of fun and each got their picture with Cinderella.

My little Cinderella. We love you Gracie!!

International Neuroblastoma Awareness Week

This week is International Neuroblastoma Awareness week. It is also Gracie's 5th birthday July 25th. I cannot think of a better gift than to donate your lunch money for one day, toward research for a cure!! even a dollar adds up if enough people do it!

you can donate in the following ways:
*Online at www.lunchforacure.org by credit card, debit card or electronic check. on the site, you can find gracie's tree and add an ornament for every 5 dollars donated. just put Gracie's name on the donation page.
•By calling 1-877-883-7464.
•By sending a check or money order to:
•The Neuroblastoma Foundation
•3704 Hamilton Ave
•Fort Worth, TX 76107

the Neuroblastoma Foundation is a 501(c)(3) public charity. Their donations are tax-deductible to the full extent of the law. Then provide them with the Neuroblastoma Foundation tax ID number: 26-4373250.
Who do you know that might give up a lunch for kids with neuroblastoma? Please forward this to them :)
thank you and we love you!

What is Neuroblastoma?
Neuroblastoma is a solid tumor cancer that arises in immature nerve cells and strikes primarily infants and children. It is the most common cancer affecting infants with an incidence rate of almost double that of leukemia. Its cause is unknown. Nearly 70 percent of children diagnosed with Neuroblastoma have advanced-stage disease. Less than 40 percent of children with advanced disease live five years.

Neuroblastoma is a solid tumor-a lump or mass-originating from neural crest tissue that is part of the sympathetic nervous system (SNS). This part of the nervous system is responsible for the "fight or flight" response when stress occurs. Nerves of the sympathetic nervous system run parallel along the outside of the spinal column and connect to organs. Since neuroblastoma arises at the interface between the nervous system and the endocrine system (the hormone producing organs-it is one of the few cancers that secrete hormones), it is also included in the class of neuroendocrine tumors.

The most common place for neuroblastoma to originate is on the adrenal glands located above each kidney (40 percent of localized tumors and 60 percent of wide-spread disease). Neuroblastoma tumors can also develop in nerve tissues in the neck (1 percent), chest (19 percent), abdomen (30 percent non-adrenal), or pelvis (1 percent)-anywhere along the chain of the sympathetic nervous system. In rare cases, no primary tumor can be discerned.

"Neuro-" indicates origin in nerve cells, and "blast" means immature cells. Normal "neuroblasts" (baby nerve cells) begin in embryonic tissue and grow and mature into functioning nerve cells. Neuroblastoma means the immature cells reproduce forming a mass and do not develop into functioning cells (the "-oma" ending denotes a tumor). Neuroblastoma is not a cancer of the central nervous system (CNS) and it is not a brain cancer, but occasionally it metastasizes to the CNS. There are over 50 kinds of pediatric cancers that fall into 12 main categories, one of which is the sympathetic nervous system cancers. Neuroblastoma accounts for more than 97 percent of all sympathetic nervous system cancers.

Neuroblastoma is a very rare cancer
Of approximately 13,000 new cases of childhood cancer in the U.S. each year, only about 650-700 are neuroblastoma. There is similar incidence in other countries and no clear differences between ethnic groups. About 55 percent of all neuroblastoma patients are boys.

Understanding that neuroblastoma is a rare disease is important. Many pediatric oncologists see few neuroblastoma patients. You are entitled to ask how many neuroblastoma patients your hospital treats, to consult with pediatric oncologists and surgeons who specialize in neuroblastoma, and to get all your questions and concerns answered to your satisfaction.

Neuroblastoma is a pediatric cancer
Neuroblastoma generally develops in young children. The median age at diagnosis is about 2 years old. Numerous children are diagnosed after age 2, but the number of diagnoses decreases as age increases. Adult diagnoses of neuroblastoma are extremely rare but not unheard of.

The cause of Neuroblastoma is unknown
Although the cause of neuroblastoma is unknown, most physicians believe it is an accidental cell growth that occurs during normal development of the sympathetic nervous system.

family vacation

Gracie has been eating well (for her) these last couple weeks. Her weight is not up nor down but holding steady. :) She likes to eat a lot of cereal, cottage cheese, refried beans, yogurt, pudding and mac n cheese.
We just got back from a 2 week vacation to Idaho, Yellowstone, and Moab. Gracie did really well and was playing like a regular kid. It was wonderful.
Gracie hiked some of the way to delicate arch. it is a mile and a half each way, so obviously that was out of the question to have her do! and who wants her burning that many calories anyway!! haha. Brandon carried her most of the way up. I carried Von some of the way up and Brandon would take Gracie up a ways and then come down and pack Von up. back and forth cause I was a wimp. lol then he carried Von down and I carried Gracie. She was much easier to carry than Von! that 5 less lbs made a huge difference.
Gracie at sand dune arch. The kids loved this arch for all the cold sand. we were lucky to be there when the weather wasnt too hot like it usually is in July. we did the hike to delicate arch and just got done with sand dune arch when it started to rain. we went swimming at the Rv place and then dinner and shopping! We had a great time visiting a lot of our family and I was pretty emotional talking with them about her. It is so good to be at this place in treatment. the end!! We were able to have such a wonderful trip with a new outlook on life. the kids all did awesome and we all enjoyed every bit of it.
a funny/cute thing I wanted to add. Gracie and Chloe have been playing with their toys and Gracie will tell Chloe to be the DR and she takes her toys to her and says they have cancer. She tells DR Chloe what needs done, surgery etc. then Chloe said "OK the cancer is all gone!!" Gracie said "are you sure? you better do a donut scan" (donut scan is what she calls the CT scan cause it looks like a big donut) well, Dr Chloe did the donut scan and all was clear! :)

Cancer free

Results of CT scan = clear!!!
Results of MIBG scan = clear!!!
Results of bone marrow= clear!!!
No evidence of disease!! Gracie is cancer free. I got a call from the nurse on Friday as we were heading out to go camping. She told me the results and we were So happy and relieved. I hung up the phone and sobbed. Thank the good Lord for blessing Gracie and all of our family. A huge weight has been lifted. We had a wonderful weekend camping. Gracie would give me hugs and say " that's because so happy that my cancer is gone" she melts my heart. We cannot even express how happy we are!
Today we drove back down for scan review with Dr Granger. She said the happiness on our faces is why she is able to do her job. Because she knows what is possible. I have to admit there are a few times I seriously doubted her when she told me it would/could get better. then They paged the surgeon to come over to clinic to pull her central line out. She was scared but she held real still and it went very quick. She is so happy to be free of the lines and having dressing changes. It has been 10 months with the line in. 4 with the first one and 6 with this one.
So, where so we go from here? She will continue with milk feeds to supplement her appetite, and gain weight and strength! She will have scans every 3 months (CT and bone scan) for the first year. After that, it will be every 6 months for 2 more years, and blood work and EKG/echo for another 2 years, providing she doesn't relapse.,heaven forbid. So she will be followed for another 5 years, until she is almost 10!
We want to thank you all SO much for all the love and support, kind words and prayers!!! We couldn't have made it through without you, and of course the love and comfort of our Savior and heavenly Father. We are so blessed!!!

Follow up scans

Sunday night I took all the kids down to Ft worth to stay in a motel. The mcdonald house only allows 4 people to a room, and we had 5 so we had to get a motel. We found one with a pool so that was a fun thing. WE stayed 4 nights and came home today. Monday her appt was bright and early at 745. she had labs and then they did a cortisol level check and drew levels at 30 min and 60 minutes to see how her body is doing with it. Then I took the other 3 to a drop in day care in Arlington, which is a nicer area. they had a lot of fun and were there 6 hours! it was a good thing i took them there. We went at noon for her EGD and bone marrow biopsies/aspirates. we waited til 245 before they finally got to her. the procedures were done with at 4 and we waited around for another hour and she ate 2 packs of teddy grahams. :) she did great so they let us go. She wanted to go to olive garden so we did. she actually ate quite a bit of salad and alfredo. When we first got there, they took us to a table, and I asked if they had a booth but they said they couldn't do a highchair at a booth because it was a fire hazard. first time I had ever heard that. I cant even count how many restaraunts we have done that at. anyway, I said we would have to go somewhere else, because Gracie needed a soft seat and Von needed a high chair so he would stay put. :) She didnt offer any other options. so we were leaving and the manager said he had a table with soft seats and room for a high chair. i was a little annoyed with the first gal after such a long day, and her attitude about it. i doubt I am the first person needing something like that. they should know the options in my opinion. lol
the next day she had a hearing evaluation and she did really well. she hasnt had any change since last year. she has some hearing loss in high frequency but nothing that needs a hearing aid at this point. We are grateful to learn that the transplant didnt make it any worse than the previous chemo.

Wednesday she had a CT scan and the MIBG injection. then we went to Mcdonalds and Gracie lost her 1st tooth eating chicken nuggets! she got a little freaked out at first, then started laughing. She said it hurt to eat after that, so we got her a vanilla milkshake.

today was the MIBG scan, which shows 90% accuracy if there are any tumors. if there are tumors, they light up. we will get these results next monday. She has to lay still for 70 minutes and she always does so awesome. she fell asleep the last half hour. after that was done, we were able to hit the road and head home. The ride home, we stopped evry couple hours for lortab or ibuprofen, since those bone marrows sights were still very sore. other than that, it was great and we made it home is the usual amount of time. We go back down to clinic on Monday to review all of the test results with the Dr.

Gracie is doing well and her appetite is slowly improving. She still doesn't eat anywhere near enough calories on her own, so we continue with the milk feeds to supplement. Tonight is her last night of TPN and she will get the central line out in 2 weeks. :) She is happy and getting stronger. She loves to play with the other kids and feel like a normal kid. she also loves to sing and dance to Taylor Swift and Michael Jackson. We are going to go to the Taylor Swift concert in September, we hope to find a way for her to meet her. we will see. I didn;t end up doing the lemonade stand yesterday, but hopefully soon. Thank you all for always praying and loving our girl. xoxox

Next weekend we are doing a lemonade stand to raise money for childhood cancer. check it out. http://www.alexslemonade.org/mypage/72583
So, once again, it has been a long time since I have updated the blog. We have been having a good time trying to create a new normal. It is nice to not have to be anywhere very often. Gracie is still on TPN for 12 hours every night for weight gain. She weighs 31.5 lbs now and is looking good. :) She is getting stronger and trying to be a regular kid. She is happy except when she's hurting and her appetite is hit and miss but she is improving. We have been going to the clinic in town for her labs once a week, and then they ship 7 days at a time of TPN. She will go down to FT worth MOnday for clinic there and then start her last 2 weeks of accutane!after that 2 weeks, she will have her scans.