We help our kids with big dreams and little dreams. Sometimes it’s all about making hospital stays more comfortable and taking care of everyday hassles so that the families can focus on their time together.
Gracie
Seven-year-old Gracie, diagnosed with brainstem glioma in 2008, asked for Hannah Montana paraphernalia! We also got her Disney princess toys, video games, and art projects to keep her busy, since she isn’t able to leave the house very often.. Care packages of travel items and snack foods also helped make hospital stays and long periods of bed rest easier on the whole family.
Gracie’s Story
As told by her mother, May Kelly
Gracie, age 7
Instead of sending us home to wait for the results I was sent into a room to talk to Dr. Murray, the pediatric neuro-oncologist. I remember him asking me if I knew what an oncologist was and telling me that my daughter had a brain tumor. Everything happened so quickly after that. My daughter was admitted and underwent an operation to remove the tumor. However, that operation was unsuccessful, and we were told that her tumor could not be removed. She was diagnosed with a slow growing brainstem glioma. She was put on a chemotherapy regimen and then radiation. The tumor has remained “stable” on MRI scans.
Through it all Gracie has been strong and brave. Her world has been turned upside down, but she has never complained. She is our hero! At this time, based on her symptoms, her tumor continues to show signs of clinical progression. She continues to vomit, has chronic sore throat, intractable hiccups,some hearing loss in her right ear,and, most recently, numbness in the right side of her face and difficulty walking. We have been told she has received the best standard of treatment and there is not much else that can be done. As her parents we continue to search for our miracle. We are hoping and praying for the day when all of this will be a distant memory!
Read about Gracie’s dream vacation in Florida!
Allison
Allison had been treated for headaches and migraines for some time. On Thursday, March 4, 2010, Allison had an increase in symptoms and was taken to the ER on Saturday, March 6th. It was on this day that the Long family would be changed forever. Tests were performed, and it was determined that the cause of Allison’s symptoms was a brain tumor. Allison was diagnosed with a rare, inoperable brain tumor known as a diffuse intrinsic pontine glioma (DIPG). Allison was 10 years 3 months old at the time of diagnosis. Our love and prayers are with the Long family during this difficult time.
From Mom’s Blog September 6, 2011
This tumor is an ugly thing, and is slowly taking more and more from our brave girl. Allison has for the most part lost the use of her right hand and arm, and this is very frustrating for her as she is right handed. We are encouraging her to try to use her left hand, which she does, and she constantly pushes us away if we try to help her, she is so independent and wants to do things herself, no matter how difficult it is for her. Her determination and will are amazing. Eating and drinking are also difficult, but she does things her way and makes it work. She still has a passion for pickles and has them daily — she will sometimes nibble at one for several hours. She had a rough afternoon yesterday and we ended up calling a nurse out, and adjustments were made to her pain medication, and we were able to get things back under control. The down side was that she slept about 12 hours after the episode, and developed severe congestion today. We contacted her medical team again, and they have been taking care of her thru the evening to get her comfortable again.
From Mom’s Blog September 9, 2011
The last few days have been hard. We know that the coming days are going to be harder. Our beautiful girl is slipping away from us and as much as we want to, there is little we can do to prevent this. This past Tuesday marked 18 months since that day in March when we received the devastating news that Allison had a brain tumor. We have had so much more time that we thought we would, but it is still not enough – it will never be enough. Allison’s condition has deteriorated rapidly over the last 7 days, and we are doing our best to make sure she is comfortable. She is no longer eating, and only drinking small sips of water. She slept almost all of the last 24 hours – I awoke at about 4:30am and heard her talking to Larry and jumped out of bed to see her. She has been very thirsty this morning, but drinking is a struggle, and she coughs a lot. Talking is also very difficult, and she is trying so hard to talk to us to tell us what she needs. Her pain seems to be under control, and we are thankful for that.
We had the pleasure of meeting sweet Allison and her beautiful family on Saturday, September 3, 2011. At this time Allison told us she wanted to get out of the house (she’s been stuck inside with limited mobility for quite some time). Her dream was a Build A Bear Workshop shopping spree! Allison also requested a very special bear, a dragon that will be the signature bear for Cook Children’s Build A Bear Workshop. As of now, the dragon is not even in production and only a hand full of prototypes are in existence. I am happy to say that we were able to make Allison’s dream a reality! Due to her unexpected decline Allison was unable to visit the Build A Bear Workshop, but we brought Build A Bear to her! Allison is now a proud bear mommy to over 40 bears, including Mr. Dragon! We had the pleasure of delivering these special bears on Saturday, September 10, 2011 along with pink and purple balloons (Alli’s favorite colors), an extra special life size teddy, a chocolate teddy bear cake, dressed as a fisherman, just like Miss Allison and lunch from El Fenix, Allison’s special request of Tamales and queso.
