Jamilyn was born in July of 1999. She was a happy, healthy, energetic and bright little girl. Jami was full of life! During the summer of 2007 Jami was on a soccer team, was in her parents wedding in the mountains, was diagnosed with ADHD, entered the 3rd grade, and she turned 8 years old.
She also beginning to get sick. We began to notice in July that Jami was losing a little weight (we thought she was just hitting a growth spurt). Then she began having headaches and vomiting. At first the doctors thought it was a reaction to going on ADHD medicine, then they thought she was getting stomach viruses. Her symptoms were on again and off again. She would go for a week and be sick everyday and then she would go 2 weeks and no be sick at all. Then she began to complain her back was hurting. The doctors said it was because her school book bag was too heavy. Over the next few months her headaches, nausea, and back pain increased in severity and frequency. Her headaches would be bad enough that it would keep her awake at night.
Then in mid October all of our lives were turned upside down. It was a Sunday evening, Oct. 14, 2007. Jami and her parents were at her Aunt and Uncle's house. They noticed that Jami was not walking just right. She was stumbling around and bumping into things and after questioning her they discovered Jami was having double vision. Luckily, Jami had a doctor appointment on Tuesday. A few hours later they noticed Jami's eyes were crossed. Her mom called the doctor and the nurse said to take her to the ER. Karen and Aunt Lisa took Jami to the ER while Joel and Uncle John stayed with the other kids. At the hospital Jami had a CT scan and the doctor came in to tell Karen that there was a brain tumor and they were transporting her to Duke. Karen made the call to Joel and the grandparents and they contacted the rest of the families. Everyone converged on Duke in just a few hours. Within a few hours of the diagnoses, Jami had been transported to Duke, had an MRI and other tests, and pre-op done and was ready for brain surgery. Then on Mon. Oct 15th, first thing in the morning, Jami's surgery began. After a long surgery the family meet with the doctors where they said they had removed all of the tumor. Then they told us the tumor was cancerous! Jami would have to have radiation for 6 weeks and 4 week long chemo treatments as well as MRI's and spinal taps every three months for 2 years and yearly beyond that.
When Jami awoke from the surgery she could not walk, talk, or communicate in any way and she was very upset! She is not understand what was happening to her! Jami would have times where she just cried and we had no idea how to help her. She even refused to eat or drink. After a few days Jami was still having some problems with the pressures in her brain and they had to go back in and install a shunt. Jami came home on Oct. 22nd.
On Nov 12th the doctors inserted a central line and a few days later they began taking Jami's stem cells. An area wig shop donated a wig for Jami to wear while her hair was gone. On Nov 19th Jami started radiation treatments 5 days a week for 6 weeks (mid Nov to the end of Dec) while also having physical therapy once a week . Jami had a 6 week break (except for physical therapy) before she started Chemo treatments on Feb 10th. For Jami's treatments she would be in Duke for a week, go home a week, then she would get sick and have to go back to Duke for a week, and she would be home a week and then it was time to start over again... at least she did not have physical therapy while doing chemo. This went on all of Feb, Mar, and April. When it was time for Jami to get her fourth treatment her blood count would not come up enough (her third treatment was even late because of the same reason). The doctors decided it was best for Jami's long term health for her not to get her last Chemo treatment for fear that it could kill her. So the good news was she was done with her treatments!
As a reminder, Jami stopped eating in Oct. after her surgery. She started nibbling on a few foods the beginning of Nov. but in Feb. she stopped eating all together. The doctors started her on artificial nutrients that went in her central line in Feb. and that is what she lived on until June. In June the doctors said they could not leave her line in any longer so they scheduled her central line to come out on June 23rd but Jami still would not eat! When she went for her pre-op to take out her central line they told her they would have to give her a feeding tube because she was not eating... and she was okay with this! It was not until Aunt Lisa pointed out to her that she would have to miss VBS because of being in the hospital that Jami finally started eating!!!
As of Today:
Jami started physical therapy again at the beginning of June and she had appointments through August. The physical therapist and the school helped Jami get a walker for her to use to begin getting back to "normal". Jami is walking on her own now but her balance is still off and she frequently trips, falls, and bumps into things. Also, during Jami's many MRI's they determined that her optic nerve on the right side had been damaged from the tumor and they prescribed her glasses to wear to protect her eyes (not that she wears them). They did determine that Jami has some hearing loss (fortunately she had exceptional hearing before). After missing a whole year of school, Jami had to repeat the 3rd grade but she is now doing well in school.
In March 2009 the doctors determined that Jami now has a rare thyroid condition that she has to take daily medicine for the rest of her life. In addition, Jami now has issues in Math in school. Jami is finished with her MRI and spinal taps every three months and she has an otherwise clean bill of health. Jami however is not gaining weight very fast (she lost about 40 pounds during her treatments and she has gained about 10 back) and she is not growing normally. Jami's doctor says she will probably have to start hormone treatments soon to help her start to grow again.
In June 2010, Jami has started her growth hormones! She gets 1 shot a day 6 days a week ... one in her stomach, one in each leg, and one in each arm. We hope she will begin growing soon! Jami is now wearing her glasses more often. She still has balance problems and bumps into things or falls frequently. In October Jami had one of her routine MRIs. But this time the doctors find a spot where her old brain tumor was! It can be scar tissue, a shadow, a new tumor... they don't know. Her growth hormones are stopped (this will increase the growth rate of the spot) and Jami is on hold until December when they plan to do another MRI. The results of the December's MRI: the spot is still there but smaller. The doctors still do not know what it is but its smaller. Jami can now begin the growth hormones again... now we wait for her to grow!
Thank you for all of you prayers for Jamilyn!
We are very blessed to have Jamilyn with us ♥!