Friday, July 22, 2011

Team Big J Willy!!


As Gavin would say, "It's tricky."

It's hard to ask for donations. It's hard to give support. And when you do decide you want to donate, it's hard to figure out which cause to give to and how much to contribute.

Over the years, I have done a little fundraising. When Jacob's doctors thought he had Tuberous Sclerosis Complex, I sent out handwritten letters asking for donations during their May Awareness month. Later, after Neurofibromatosis Type 1 was added to Jacob's diagnosis, I did the same once a year for NF1. I worked at a law firm for a few years and we did fundraisers every year for the United Way of the Big Bend, and last year our family participated in the Shamrock Scurry at our church to raise funds for missions. TD and Gina have donated a portion of each of their paychecks for years to the Children's Tumor Foundation (CTF). I’ve always enjoyed the small part I (we) played in the fundraising and I know fundraising is important and makes a huge difference for the cause. I felt terrible that I hadn't participated in one in a while.

Feeling this way, I started to look for something to support in hopes to again make a small difference. After all, if we all put in a little, it turns out to be a lot!

Most of you received my email a few weeks ago from the Brian Tumor Foundation for Kids (Brain Tumor Kids) asking for donations. They are holding their annual fundraising run this weekend in Atlanta, GA. I had really hoped to participate in that run, but, for many reason, we weren't able to. BTFC has touched our lives directly through their Butterfly Fund. This fund is a financial assistance program that provides direct financial assistance to needy families of children and young adults with brain and spinal cord tumors for items not covered by other means. Some of the expenses the Butterfly Fund helps with are assistance with rent or mortgage payments, utility bills, car loan payments, car repairs, miscellaneous household expenses, etc., which a family may be unable to afford due to loss of work at the time of a child’s diagnosis and treatment. It also covers items not normally covered by some health insurance plans, such as special medications, long-term or special rehab services, hearing devices, wigs and prosthetic devices, home health services, and tutoring. They will cover travel and lodging expenses associated with seeking and/or obtaining treatment at locations outside of the patient’s city or state and funeral expenses. The Butterfly Fund made an enormous difference in our life by helping with some of our high gas costs back and forth to Gainesville for Jacob's multiple treatments. They have even sent packages for me and the kids. Not too long ago I received a nice huge canvas tote bag sporting their logo and the kids got a package in the mail with Target Gift Cards for Jacob and Brie and a bath paint set for Gavin. That little box made three kids very happy! All of that was made possible due to donations and fundraising. If any of you were able to donate, thank you!! BTFC is a more than worthy cause and is making a positive difference in so many children’s (and their family's) lives who are living with horrible brain tumors. Our family is an excellent example!

Their web addresses are and

Because we weren't able to participate in BTFC run, I started looking for another one, something later in the year, giving us more time to prepare and recruit donations. Jacob's stepmom told me about a run in Clearwater, FL, called Moving Towards a Cure, put on by Miles of Hope. I read about their annual fundraisers and started thinking about participating. It was close to our wonderful family in St. Pete, would be easily accessible for all of us and would be a lot of fun. I started walking and running every other day. Feeling like I would be able to run 3.1 miles by the end of September (maybe, lol), I registered and completed a home page to start recruiting support for Jacob's team, Team Big J Willy!.

Miles for Hope’s Moving Towards a Cure is currently part of the funding for a "research grant to University of California Los Angeles (UCLA), neurosurgeon Linda Liau, M.D, PhD to begin the clinical trial, Optimizing Dendritic Cell Vaccination for Low Grade Glioma Patients. This clinical trial is the first trial of its kind for patients that have been diagnosed with low grade gliomas, a common form of brain cancer. This grant is the collaboration to fund research that has the potential to improve the lives of brain cancer patients." Being curious about how a vaccination worked for brain cancer I have spent several evenings over the last week reading articles about "Dendritic Cell (DC) therapy." DC therapy "represents a new and promising immunotherapeutic approach for treatment of advanced cancer as well as for prevention of cancer." It is fascinating, but a bit hard to understand. Basically DC therapy uses a patients' own cancer proteins to teach the body to fight the disease. UCLA is using it for malignant gliomas. This type of brain cancer usually requires painful treatments that often don't stop the disease's progression and the patients only live for about a year after being diagnosed. Vaccines made from a person's white blood cells mixed with tumor proteins may make the body build an immune response to kill tumor cells. The funds raised at the Clearwater run will be put towards expanding the Dendritic Cell vaccine trail to low grade tumors and pediatric patients. Moving Towards a Cure's website states that they bring brain tumor awareness and support trials and research. This is the cause I will be running for in September. I will be sending out an email to everyone if you would like to join our team to run, walk or cycle with us, or if you would just like to make a donation.

My heart goes out to all persons living with horrible illnesses and diseases, especially children. My heart breaks for children and elderly who are hungry or homeless. Like I said, there are so many worthy causes available to us it is hard to know which is the best to support. Having said that, it was really very simple for me. Jacob is my motivation. Jacob is the person I want to help most and he is the reason my heart is drawn to fundraising for brain tumors. In my opinion, Moving Towards a Cure isn't going to help Jacob or Neurofibromatosis Type 2 any time in the near future (I did find a blog of a woman who lives in Mexico and received Dendritic Cell (DC) therapy at Oasis of Hope, which is an alternative cancer treatment center. Her blog suggested it didn't cure her NF2, but was a successful treatment for her. She doesn't have any recent post for me to know how she is doing now.), but, for me, it is a worthy cause, it just isn't "THE" cause. Wanting to help Jacob and the NF2 community, I have decided to also send out invitations to donate to the Children's Tumor Foundation (CTF). I will be holding a virtual tea in Jacob's honor. A Virtual Tea for NF is not actually an event, but a mailing for Jacob's family and friends. I will be sending out an invite to support the Children’s Tumor Foundation in honor of Jacob and to have a cup of tea compliments of the Foundation. I could write about all the things CTF is doing for NF, but please visit their website if you want details. All of CTF funds go to the support of patients and families and research for NF1 and NF2. I'm not sure how Jacob would feel about having a tea party for him, but it is the best I can do since CTF isn't having a NF Walk in Florida this year or any where near us.

Thank you for reading this long blog post about three really great causes, and if you haven't already found a cause to donate to this year, I hope that you will consider one of the ones I have mentioned. Please be on the lookout for my follow up emails!!

Thank you so much.


Monday, July 11, 2011

Moving forward....

It has been pretty quiet at the house the last few days and will be for the rest of the week. Jacob and Brie are at their dad's house in Georgia this week. I already miss them very much, but I know they are having a good time. I will be counting down the days this week until they get home Friday afternoon. Nine days is a record for me being away from them.

Wednesday of last week Jacob had an Avastin infusion at Shands and a Neurology appointment. It was a long day, but everything went well. We left our house at 6:00 am and returned home at 6:30 pm. Even with Brie and Jacob's help with Gavin, I was still a tired mama by the time we got home. I can proudly put it down as another day survived.

Jacob's infusion went well and he didn't have any nausea during or after receiving the medication. Jacob did have a nasty nose bleed on the way home that afternoon, but since that is the worse thing that has happened since his infusion, I am greatful!! I had my last face to face conversation with Dr. Smith before we see her again in October. I talked to her about the adrenal gland debate and his up coming surgery. Jacob will have two more infusions and then then take five and a half weeks off before his surgery. Four weeks after his surgery we will see Dr. Smith in Orlando for the first time, the first week in October, for a clinic appointment to check Jacob's incisions and most likely have an MRI. After that appointment Jacob will be able to start back on the Avastin. At the time of our discussion Dr. Smith said they were waiting to hear back from TMH about Jacob being able to receive his treatment there. A request had to be put in to Tallahassee Memorial Hospital's CEO to approve Kids Corner to administer Avastin to Jacob.

We went from the hospital to lunch and then to the pediatric clinic at the medical plaza to see Dr. Andrade. Jacob's appointment wasn't until 3:00 pm, but I was hoping if we arrived early we could be seen early. I wasn't surprised that it didn't happen. Jacob was called back around 3:30 and we didn't wait in the room too long before being seen, so that was good. Dr. Andrade asked how Jacob was doing and did an exam. He asked how Jacob was feeling and responding to the Tegratol ER. I was happy to report that I haven't seen any odd behavior from Jacob since he started the new medicine. Dr. Andrade looked over Jacob's most recent MRI findings and agreed with what we were told by Dr. Smith's clinic. We talked about Jacob remaining a patient of Dr. Smith's after she moves locations to Orlando and I asked Dr. Andrade if he would continue to follow Jacob. If Jacob doesn't have any problems arise, we will return to see Dr. Andrade in January of 2012.

On Friday I heard great news from Hillary, Dr. Smith nurse practitioner. Kids Corner at TMH is willing to give Jacob’s Avastin infusions as long as Dr. Kelch, Jacob's pediatrician here in Tallahassee, will sign off on the orders Dr. Smith's office sends. Hillary said the charge nurse, Donna, at Kids Corner wanted me to have her number so Jacob and I can visit their facility before he starts his treatment there and in case I have any questions. She already sounds nice! I plan on taking Jacob in August before school starts and before his surgery so we will know what to do when he's ready. We live only a few blocks from the hospital! This will be a huge weight off of Jacob and our entire family. In fact, as I type this I am in tears... I'm not sure why, other than the feeling of relief. I have been so worried how Dr. Smith's move to Orlando will effect Jacob's care. With Jacob starting high school, having his his infusions at home means he will miss less school time and he will be able to rest longer. Over all it will remove the burden of traveling so far every other week for Jacob's care, period. We will make the trip to Orlando every three months, unless things come up to see Dr. Smith have Jacob's MRI and have his continued care with her.

So, for now, we have a plan! Jacob has two more infusions and will make his first trip to camp Boggy Creek in a few weeks. He is getting excited about that. The camp looks awesome. Check out their web site if you have time.

We are hoping to make a Rays baseball game for Jacob's birthday, do some fishing and take a trip to the beach. Jacob has his biannual trip to NIH the week of August 16th and a week after we return he will start at Leon High. I hope to establish a relationship with his teachers and then start to prepare for Jacob to have surgery.

Moving forward, one day at a time.

"Where the heart is willing, it will find a thousand ways." -Arlen Prive

Thank you for your continued prayers and thanks for keeping up with Jacob!!

Friday, July 8, 2011

Beads of courage

Jacob, Brie and I strung all of Jacob's
beautiful beads together.....
just the way
Jacob wanted them.
Jacob said as he gets new beads he will change the patterns up.

Jacob is so very proud of
his beads!!

These are the beads we
have given Brie so far.

  A few weeks ago the big kids came home and told me about this really neat program for children with serious illnesses called Beads of Courage. Jacob expressed that he wanted to participate in it and went on and on talking about it for days. After some online research, a few calls, several emails, and some Facebook time, I was able to sign Jacob up to participate. It is a truly special program and I wanted to share it with you.

As the web site states, every bead tells a story of strength, honor and hope. "The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path."

Since Jacob's medical journey began so long ago, it took me a while to write down his initial bead request. It brought back a lot of memories, both of hurt and of triumph. In a small way I was forced to relive some memories that I have put away and it turned out to be therapeutic, reminding me of how far Jacob has come, how many odds he has already beaten, and how so very strong and courageous he is. Jacob's string of beads is beautiful. He received star beads for each surgery, white beads for chemo and immunizations and blue beads for his infusions to date and clinic appointments. Jacob was sent black beads for port accesses, IV starts and blood draws and Magenta beads for his trips to the ER. His yellow beads are for nights spent in the hospital and square heart beads for the nights he has spent in PICU. His light green beads are for the MRIs, CTs, EEGs, EMG, audiograms, ABR testings and heart echos he has had. Rainbow beads were given to Jacob for his years of therapy and the lime beads are for time spent on bed rest or being out of school due to his disease. For most of the beads for his past medical history, I underestimated Jacob's request. For example, regarding his MRIs and clinic appointments, I only asked for one bead for each year of Jacob's life in treatment. He has had so many over the years I felt like it was more reasonable to only count the years since the onset of his NF2 instead of going back and requesting a bead for each individual one. Not to mention trying to calculate a bead for each OT, PT, Speech or CS therapy for the last eleven years would’ve been difficult to say the least! Jacob used to do all four, each twice a week! From here forward Jacob will get a bead for each individual step in his journey.

I never thought my almost-fifteen-year-old son would love something like beautiful beads, but ask Jacob about his beads and watch him light up! He will start to talk about his up coming appointments and relate them to receiving a new bead. I think it is very special to be able to associate something nice with not-so-nice experiences.

Beads of Courage also has a special program just for siblings to acknowledge the challenges they face when having a brother or sister who is fighting an illness. Brie got her own collection of special beads along with a colorful program guide as symbols of support and encouragement. Brie's beads are beautiful too! I will give her more as she continues to walk with Jacob through his journey. Our Beads of Courage representative suggested we get Gavin his set around the age of three. Gavin needs a gold metal for all the happiness and positive distraction he has given us over the last two years during hard times. At age two, he has spent more hours in hospitals and doctor offices than most people do in their lifetime. All three of my children are troopers. Reminds me of the Children's Brain Tumor Foundation's "Tumor Troopers" sticker we proudly have on the back of our van, but that's for another blog post.

Thank you so much Beads of Courage!!

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”  Mary Anne Radmacher

Check out the web site if you have time. It is really a wonderful organization.

They sell t- shirts and beads and other items that support their program.

Thanks for reading!

Thursday, July 7, 2011

Do you Instagram?

I do and love it!! 

Instagram is a beautiful way to show your life through photos on your iPhone or iPod Touch.

Here are some of my favorite photos from the past few months I have taken and put into Instagram.