Erin Potter's Journal
Written Mar 5, 2014 7:47pmMarch 5th - Tonight as our family is blessed with good health, we are reaching out to you to help another family in need.
Keira is a fellow Leukemia fighter of Erin's. She was just a newborn when we met her and her parents as she was diagnosed for the 1st time in 2011. She went through 2 1/2 years of treatment and was doing well. A few short months ago, right after her 3rd birthday on Christmas Eve this past year, it was discovered that Keira's Leukemia had returned. Today she and her family are facing the long and difficult road to a bone marrow transplant.
We started Champions for Hope in 2011 as our family's way to give back after all the support we received during Erin's battles. It led to an amazing evening at Cleveland's Severance Hall that raised enough money to donate $125,000 to University Hospital's Rainbow Babies & Children's Hospital for their new bone marrow transplant rooms.
Champions for Hope has contributed to more than the new rooms. We have also donated to other transplant families locally, helping them pay bills, have Christmas, and make life during such dark times a little bit lighter.
We would like to continue down this path. We need your help!
Please go to the link below and give if you can to our Champions for Hope fund. Your donation will help lift Keira's spirits by providing funds for decorations in her hospital room and giving her family gift cards to help them through this more than difficult time.
Any donation helps. Also - PLEASE SHARE THIS LINK! Our goal was to raise $5000 for Keira's family. We are at about $2100. The fundraiser ends this Sunday - 3/9/2014. Help us get there. Help us give back. We only have a few short days left.
Also, please simply pray hard for our sweet little friend and her family. WE KNOW PRAYERS WORK.
Thank you for your continued love, support and prayers.
Champs for Keira:
Written Feb 27, 2014 6:28pm
February 27, 2014 – Today marks 7 years since Erin was first diagnosed with Acute Lymphoblastic Leukemia. 7 years. I think back and I honestly cannot believe all that has happened. In many ways it feels like it has been so very long. In others ways I cannot believe how the time has flown.
7 years ago I was sitting in an in-service at school learning about a new phonics program that we were going to start teaching. The door to the room opened and I was summoned out. I had to take a call. It was my principal. She had to deliver me the worst news I had ever heard. I think back to the courage it took her to share with me the words she did.
“Erin’s blood work came back and it’s not good. You have to get her down to the hospital now.”
Kevin had called her not knowing how else to get in contact with me, and he was already on his way to pick me up. A good friend was bringing him so that we could drive home to get our precious little girl together.
When he pulled up to the high school to pick me up, he was on the phone with our pediatrician. He immediately handed the phone to me so that I could speak with her. I could not tell you all that she said to me that day. I can just tell you I heard the words, “white cell count…platelets….leukemia.” I really didn’t even know what that all meant. I just knew the woman – the doctor – on the other end of the line was crying. I knew it was bad. My knees hit the sidewalk. Kevin pulled me up and forward. We had to keep moving.
We got home and thankfully the caring woman who was taking care of our sweet baby was cool, calm and collect in this moment of chaos. She had her heads up to get Erin ready to leave and she did. Another act of bravery that day that I remember so well and am so thankful for.
We got home and Erin was still happy and completely unaware of how scary everything really was. We got her into the van and headed down to the hospital.
You know…today I had to ask Kevin to remind me about what happened when we got down to Rainbow. I remember thinking how I didn’t even know how to get to Rainbow Babies & Children’s Hospital.
And today I could not remember where we first entered the building that day. Did we check into the ER or did we go to the front desk and straight up to Rainbow 2?
Kevin reminded me that he dropped us off at the ER and he went to park. He recalled that we were hardly in the ER and then we were escorted up the floor that years down the road would become our home – our family’s home.
He brought up a point to me. It is funny how on that day we had absolutely no clue where to go, where we were. Today, we could navigate through some of that hospital with our eyes closed. Not something to brag about or really be proud of, but it is simply the reality of it all. In the past 7 years we have learned so much more than we could have ever imagined.
Going back to this day 7 years ago….
What I do remember after the car ride down there was walking into Erin’s hospital room. Kevin and I just stopped and stared wide-eyed at each other. It was HUGE. We knew immediately that we were going to be there for a long time.
Annie –our sweet precious Annie. She was only about to turn 7 years old. She was just a little, bright 1st grader at Hambden Elementary. Happy-go-lucky, filled with excitement, and adoring of her little sis. She had to get off of the bus to a whole new world.
Aunt Erin helped us by going out to our house to catch Annie off that bus. She put on a brave face for our amazing little girl. She brought her home to her house so she could play with her cousins. Aunt Erin worked hard to keep things as normal as possible to prolong the slamming of our reality. Another act of bravery. There were so many that day. So many we are so grateful for and will never forget.
Oh Annie. What a hero herself. Almost immediately she had an inkling as to what was going on with Erin. She has always been so perceptive, and she flat out asked us if her sister had cancer before we even told her. Talk about a gift from God Himself.
Annie, from the beginning, has been the most incredible rock throughout all of this. She is a constant source of support, love, consideration and strength. She has been through all of this, too, and I do not believe anyone could have handled it all as gracefully as she.
7 years ago. 7. Half of Annie’s life and most of Erin’s.
I think of what it would have been like to look back on this day without ever encountering the transplants. What would that have been like? I know we still would have been grateful. Of course. But today – it is just different. There was a whirlwind that lasted over 2 years. A complete storm and we made it through!
2 transplant roads in between February 10, 2011 and August 13, 2012 – the day Erin checked back in for her first relapse and the day she checked out after her 2nd transplant. Wow.
Today we have 3 little girls at home at night. We are working continuously to get back the “normal” life – trying to not allow fear to make us constantly look around, but allow faith to have us look up. We look forward to meeting the man who saved Erin’s life. We are always thanking God for all we have.
We have made it passed the 19-month mark. Erin relapsed the first time 19 months after her treatment ended. 9 months after 1st transplant she relapsed. We are further than we have ever been and pray to God that her good health continues.
On March 18th we will celebrate her 20-month mark post winning transplant. We will have the pleasure of doing that with Frank – Erin’s donor. He is coming to meet and stay with us in just a few short weeks. As Mary, our 3-year-old, puts it, “Frank’s gonna be part of our family.” We cannot wait to welcome him. What a blessing!
Erin continues to do wonderfully. She has some issues that she works through. Her ankle had been causing her some pain, so we had that checked out a few weeks ago. It appears as though she has osteopenia in her ankle. That is a step away from osteoporosis, so we are working on some different ideas to strengthen her bones through exercise and diet. We can thank all she has been through (steroids, chemo, radiation, and all the side effects that come with those things – not eating, being bedridden, etc.) for that. She also continues to struggle with her flexibility. It is thought that she has GvHD in her muscles, but through stretching and exercises we have seen improvement. These are small prices to pay for being cancer-free.
Many of you have been with us since February 27, 2007. Thank you for sticking with it. The prayers, thoughts, acts of generosity, love and support carries us. Thank you for sharing our story. You have brought Erin to so many others, which in turn has brought her more love and prayers.
Thank you to all of you. We love you. We are thankful for you. We are blessed to have you. Especially our incredible family, doctors and nurses. And of course, Frank.
Happy 7 years. Today is a day of accomplishment. You are a part of it.
Celebrate life. We are!
xoxoxoxo Kevin, Jeni, Annie, Erin & Mary
Written Jan 1, 2014 3:30pmJanuary 1st - There are times in life when I really do just sit back in complete awe and amazement.
I could not believe it yesterday when we received the call about who Erin's donor is. Well, today I am more convinced than ever that God does hear us and he listens. We have to simply remember to look up and believe.
Frank returned our call today and we had the honor of speaking to the man who donated a part of himself to save Erin's life. I do not think that I can describe to you what an incredible person he seems to be. I don't think that I can find the words right now. All I know is that he was so happy to hear from us and so grateful that Erin is doing well.
He gave us permission to share this picture of him with all of you. This is a picture of Frank on the day he donated for Erin. This was July 17, 2012 - the day before her transplant.
A question that we asked Frank is what prompted him to get on the marrow registry list. He told us he had gone to donate blood, but he had recently gotten a new tattoo so they had to turn him away. Luckily, the blood drive worker told him he could get on the registry to become a marrow donor. He simply said yes. We are eternally grateful for that tattoo because it was less than a year later that he was called to help save Erin's life.
There are so many things that have been happening lately that have strengthened my belief that Erin will be ok - dreams, her blood counts and tests, accomplishments of Erin, stars…I look for signs everywhere. But today God handed us a straight forward message if you ask me. Not only have we been able to talk to Frank, learn that he wants to be a part of our lives, but we also learned when his birthday is…NOVEMBER 28TH!
ERIN & FRANK SHARE THE SAME BIRTHDAY!!!
WOW! What are the chances of that?!
So today - New Year's Day 2014 - I look at the possibilities that lay before our family. I can say that I feel less afraid than I have in years, and far more hopeful. I am excited to have a friend we can call part of our family and I am eager to meet our new hero. I am thankful for good health, strong faith, loving family, friends & doctors and I am thankful for a tattoo.
Happy New Year to you all. Remember to keep believing.
Kevin, Jeni, Annie, Erin & Mary