Wednesday, December 2, 2009

Hi Gina :)

I know it's been a long time since you've heard from me, but just wanted you to know that you & your family are still and forever present in my heart. I continue reading your CB journal every time you post, and have also done my part in Evan's honor by giving blood & getting swabbed.

I also wanted you to know that James had to do a report for English on someone in his life that has passed on and he chose to do the report on Evan. He also had to do an "altar" in memory of this person (made in a shoebox). I'm attaching a copy of the report and a picture of the altar he created (front & back). When reading his report, I was intrigued by the things he remembered, like Evan's voice & hair :) For the "altar", James said he "put the big pic of Evan in the middle of the water, because that's where he is". Anyway, just wanted to share this 6th grade boy's memory of your precious Evan who will continue to be with us forever. Hope you like it.

Much love,

Kelly P

Izze Soda

Hi Gina,

So good to hear from you! What's funny is when you were sending the e-mail, I was in the middle of taking the attached photos for you. Izze's always make me think of Evan and I got the idea for these photos a while ago. It's taken me a few months to save up enough bottles, but it was worth the wait. Every one of these Izze bottles comes with a prayer for your family! I know Evan drank his Izze from cans, but when I started this project our stores only carried bottles. Either way, the sentiment is the same!

As far as the marrow drives go, I am actively looking for the next opportunity to hold one. I'd love to find out more about the group you mentioned. Also, my younger sister is going to be biking with a group of UT students and alumni this summer to raise money and awareness for cancer research. They're biking from Austin, TX to anchorage Alaska! They haven't finalized the route yet but I believe they should be biking through your neck of the woods. (unfortunately they're not biking through mine) Along the way they're doing various events to promote various parts of cancer awareness and I think it would be wonderful to have them involved in a marrow drive somehow along the way. I'll let you know more once they finalize the routes and the dates. I'd love to work out something with you to help them be involved with BAHBAD along the way.

I pray your're having a good weekend. Let me know if the pictures came through okay or if I need to send them in a different format.

With love, hugs and prayers,

From: Allison Conway

The Marrow Drive Experience

My first marrow registry and 41 people came to join! All spots were filled and there was a waiting list for blood donors....AMAZING! I am now ready to roll, and can't wait to be a part of another drive. We are already discussing our next Orono community drive (blood and marrow) to be held in November...right before Thanksgiving sometime (how perfect!) I can assure you I will be a part of and/or running other drives in the mean time!! If you or someone you know would like to hold a drive in your community or place of work...I would love to hear from you.

I feel so overwhelmed by thoughts and feelings after running my first drive, but the one word and feeling that comes to me is HOPE. We have been there personally in our own situation with Mara. As we met with doctors, discussed potential marrow donors, and outcomes, and I can tell you when you are in the dark clouds and pit of it all... HOPE is all you have. I have been motivated to pick myself up and get out ~ do something to help give other's the same feeling we have felt. I have also been motivated by a little blue eyed boy named Evan, his AMAZING family, his mommy who in her pain, suffering, and grief runs an incredible foundation in honor of her son (, and all the other families we have met on our journey who have lost, gained, and continue to watch their loved one suffer. We may all have a different journey, but the one thing I do know is we all share one thing in common and that is HOPE, so with that I will continue to educate, help run, be a part of whatever I can to get people aware of how easy it is to give HOPE. I look forward the next drive. I HOPE to see you there.

From: Tina Norton

Organ Donation Hitting Home

I create a Lenten Project for my Catholic School, St. Mary’s every year. This year transplant awareness hit home for me. My best friend’s niece Kennedy Heiman, was born with Hypoplasmic Left Heart Syndrome. After a year of ups and downs at the Children’s Hospital in Omaha, NE, she ended up in St. Louis in an induced comatose state waiting for a heart. She received her heart last July and life has been so wonderful for her family who had experienced so much trauma in that year (both of Kennedy’s young grandfather’s passed away from cancer with in months of each other). I believe the mother Tonya has been talking to you through Caring Bridge? I also have a close friend Jeanette Wulf, who received a liver transplant. She has had many other complications which made it almost impossible to fulfill her dream of being a mommy. She was blessed in August after and very rocky first trimester for her and the baby with a beautiful baby boy, Jackson. I have a lovely little girl in my class this year. I have watched her older sister struggle to breathe and barely walk from class to class around our school. She was blessed with a lung transplant in late August. She now is the most energetic, happy sixth grader you’ve ever seen. Then one night I was watching the ABC Nightly News and I saw your story. It seemed like a calling, how all of this just seemed to happen at once. Your story and mission were so beautiful that I wanted to be part of it. I was telling one of my friends about your story and she started crying telling me about how her best friend’s 8 year old daughter needed a heart transplant. It was just surreal. I’m an organ donor on my license but never really gave it much thought and here all this people I love are dealing with this at one time. I wanted to find a local organization that would directly use the money to help people. I have given money to certain organizations and then hear how much of the money goes to administrative cost, etc. and I didn’t want that. I wanted to directly affect the person involved and help ease some of the burden they would experience with their transplant. I found Tiger Teams at the Cape Canaveral Hospital. They are a group of health care professionals who educate the community on the importance of becoming an organ donor. They also give grants to local people to help with pre/post transplant expenses. So all of our classes held raffles, bake sales, popcorn, cocoa sales to raise money. We also collect soda pop tabs for the Ronald McDonald House. I created the mystery box. (I’ll send you one). The idea was that a faceless angel has given someone the greatest gift, the gift of life. The box contained and angel on a packet of seeds with a poem about “The Angel’s Gift.” I made each box and sold 144 of them to the students at the school. Translife, the organ procurement agency from Orlando also came and spoke to the children. The speaker was wonderful and had many personal stories to tell to the children and we really inspired to work harder to raise more money. With all of these efforts we raised $1,500 for Tiger Teams. I know this isn’t very short but I’m a blabber!!


Hi Gina

I hope all is well and I thought of you when I saw your husband at the USC game. I was going to tell him but there was never was a really good time with all the people around etc. I shared the news with Lindy Gandy in Hawaii and immediately she gave me your email so… I am a match for someone.

They called me and I did the first round of tests and I was a match, and then all the real finals tests (EKG, x-ray, more blood etc). May 18th is the date. They want my stem cells so I am doing Aphaeresis. I go the 5 days leading up and get daily injections of something and then on day 5 get hooked up and they swirl my blood. I think the guy is 60 and has AML. That is all they tell you which is just fine with me. I think it is really cool and others are much more dramatic about it. I know it can be emotional but it isn’t that hard so I am way more this is great, and I can help someone. And besides the lady from the Bone Marrow donation center who walked me through everything and is SO into small talk, “how lovely is the lady playing the harp in the waiting room”, everything is fine. I am giving here at the Stanford hospital so can’t be any easier.

Just thought you would want to know.

Stanford Water Polo

Spreading the Message of BAHBAD

I will never forget the day I "happened" to stumble upon Evan's caringbridge site. It was off of Henry Tuckers caringbridge site, who is a child whose care I was not personally involved with, but happen to see his site in the web browser history here at Riley. So...out of boredom one night I went to check on sweet Henry Tucker, and on his site was a prayer request for Evan Cousineau. It was a day back in october when the Cousineaus found out that there was a chance that they might not get to bring Evan home, a dream that never came true for him. I remember being absolutely CAPTURED by his beautiful face, and when I read the the journal entries leading up to that day... I cant really explain it, but there was no turning back. I read through the entire journal, twice, and was permanently changed from those days onward. Somewhere during the time surrounding Evan's death, I contacted Gina to let her know how much Evan's story had impacted me as a person, how l lived my life, and how i practiced as a pediatric oncology nurse. It is immeasurable, the changes that have occurred for the better, since I have "met" Evan Cousineau. I am a better person, and a far better nurse... Although there are never words that can adequately express my sadness when children pass away, because of Gina and her journey of grief I have a sort of understanding that helps me to BE THERE for my patients and families in a way that i never could before. I have always loved "my kids" to the point where frequently I am being told, "Julie watch your heart, you're not going to survive if you continue to love so deeply." Well, guess what. Thats what I am here for... I will continue to love these children forever.
I always knew I wanted to be a part of Evan's Entourage, but in what capacity, I didnt know. Ever since I can remember I have always had an impossibly competitive attitude, and of course, was worried that I would try and fail miserably. I talked to so many people in this area about getting involved in marrow registry and active recruitment, but like Gina always mentions... for so many people its just a taboo topic. I was constantly being turned down, by friend and stranger, and consequently would become quite discouraged at times. One day last year when Gina and I were working on collages for a drive in Minnesota she said, why dont you just come down for a visit. We'll go to the colts game! Well... thats all it took for me. I could meet the family that has been such an inspiration to me AND see a Colts game!!! Life was GOOD. :) So, fast forward a couple of weeks... and there I was in southern cal, welcomed into the house of this perfect family as if I were one of their own. I jumped on the tramp with Derek and Alaina (Evan's tramp!) we went to an AMAZING smoothie place.. we had a CRAZY funny trip to Michaels craft shop.. and we held a marrow drive at Alainas track meet. While the drive wasnt hugely successful in numbers, it succeeeded in proving to me that truly, i could run my own drive. I do not need to have a bunch of people on board with me, I only need my own desire to save lives and the rest will fall into place.
The day after I flew home from Cali, I took the trip from indianapolis to south bend to speak directly with my former nursing professors and a couple of dedicated nursing students, empowered them with the knowledge of how they can save lives... and the ball began to roll. Contacts were made with many senior people from the college, who to my surprise were immediately on board with our cause. Gina walked me through all the steps of who to contact and what to arrange, and truthfully... until I showed up the day of, I still had no idea what I was getting myself into!!! Sure, I was in contact with Gina and a rep, and yes I had as many things arranged prior to the event as I plan for... how can you possibly prepare for an event you've never experienced?!? Little things like, what will my table look like? what should i bring? will I get enough donors? will people react negatively to us? how can I attract people to the table to give them the chance to ask questions? how do I make this as approachable as possible so as to not only attract the willing donors, but also let the "naysayers" feel comfortable enough to speak and allow myself and friends to educate them? And most importantly, how do I MYSELF know that I am adequately prepared to be the leader and educator of a cause so much more than myself? So many things to stress about, so many reasons not to involve myself... but ONE BIG reason that all those tiny details dont come close to comparing to. And that is the children, the families, the patients... the ones in need. That is why I am here.
And with that, I showed up to a room full of willing volunteers.. most of whom I had never met, and spoke to them from my heart. I talked for about 30 minutes and after that every single person asked to be involved. Wow, what a feeling. We then collaborated on our set up... I had brought several photos, one girl brought poster boards and others brought markers, etc... between all of us, we created a beautiful display. One that invited every single person who walked by to atleast consider our cause. My volunteers were all nursing students who have the desire to save lives in any way possible, and that they did. They quickly absorbed the information, and spread it to their friends, their friends friends... and every stranger that would allow it. Their excitement for the cause was so obvious by every single person that you just couldnt help but want to join. I can count on one hand how many people approached our table and didnt join, and its like I told the girls... you've planted a seed of knowledge into their head that perhaps someday will evolve into a sense of responsibility for these people, and one day... maybe they will run their own drive. What a neat idea.
There were alot of very powerful moments during the drive that I feel absolutely compelled to share. The first one being an encounter I had with the Medical Ethics professor at the college. Medical Ethics happened to be one of my favorite classes during college, and that being said... I know EXACTLY how these minds work. A sense of morality gives a person the "high ground" to do things that would otherwise seem unbearable, for the sake of "doing right." So, all I needed to do was show her how it is our responsibility as healthy persons to give to those who are in need. In the begining she was very sternly against the idea of being on the registry, mostly because of the potential pain it might involve, but other excuses were also mentioned. Just as we are responsible for fighting for the unborn, for fighting for the needy, for fighting for those who cannot provide or protect themselves, we are responsible for fighting for the sick, and how can we "fight" for them if we ourselves are not willing to "give." Of course I reinforced the notion that right now, she is fortunately healthy... but one day, the story might change and she might find herself in need... and that day, she will wish the entire country was on the registry. After a few minutes of conversation, she not only found herself signing up to be a donor but also asking if I would be interested in speaking to her Ethics class. WOW! Other stories include those of my close friends, who were so very scared to join... against it. "What are you doing, Julie??" "you're crazy... no ones gonna want to do that" Ha...i sure showed them. And then they too found themselves signing up as willing donors to anyone in need! Wonderful. So proud of all these girls.

Pop Tab Contest in Minnesota

We held a donut and juice party contest for the local elementary school of about 400 kids. I told them whichever class brought in the most pop tabs would win donuts and juice for the whole class. Wow. I had no idea I would be hauling over 200 lbs of pop tabs to Minnesota this summer! Isn't it awesome!?!

Just wanted to share... miss your updates! Today is the 2nd anniversary of Lauren's transplant.