Part 1: On February 27, 2007 Erin had to check in Rainbow Babies and Children's Hospital. She was diagnosed with Acute Lymphoblastic Leukemia.
Part 2: On February 10, 2011 Erin came to the Irish with her new little sister expecting a clean bill of health for her regular check up. Her cancer returned.
Part 3: After her successful bone marrow transplant using her baby sister's cord blood, Erin's cancer has returned for the third time.
Erin was first diagnosed with Acute Lymphoblastic Leukemia (ALL) on February 27, 2007 when she was just a little over 3. She went through 2 1/2 years of chemotherapy at UH Rainbow Babies & Children's Hospital in Cleveland. On June 28, 2009 she had what was thought to be her last dose of chemo.
She was clear for 19 months during which time she and her big sister, Annie, became a big sister to little Mary. Mary came as a surprise and we found out there was more to her than just adding to our family.
On February 10, 2011 we found out that Erin's cancer returned. Thanks to the advice of Dr. Jeff Auletta we had saved Mary's cord blood. We found out that even though the chances were so slim, Mary was Erin's perfect match for her necessary bone marrow transplant.
From February 10th through early June Erin went through intense chemotherapy and total body radiation. On June 7, 2011, she received her sister's cord blood in her bone marrow transplant. She was released to go home on July 30th and had been recovering beautifully until March 2, 2012.
Erin had another routine checkup that discovered once again the return of her leukemia.
Now she begins her battle for the third time with her same relentless spirit and faith in success
November 24th - It has been a while since we have updated and a lot has been happening:)
ECP Therapy is going very well. Erin has been gaining more and more flexibility back! She has been making such wonderful improvements both physically and in the appearance of her skin. Her skin is softer, losing the darkness the cGvHD was causing, and it is much more squishy! It is absolutely amazing! Her skin was so tight before, to the point where her skin was dimpled in places like her thighs because it was pulled so tight. Now you can pinch her skin in areas you could never grab a few months ago.
Her physical abilities have tremendously improved as well. She went from not being able to ride the school bus at the end of the school year in May/June because of her lack of flexibility to get up the steps to riding a therapy bike around like a crazy kid! It is incredible! She was not even able to think about putting on her socks and shoes by herself, and now she can do it in about a minute! She can get down onto the ground and up with much less assistance than before. She can squat to lower levels, shower and dress herself again, and sometimes even do her own hair! She has even been seen breaking out in a light jog!
I know that these sound like simple, little things, but these were all things she lost the ability to do. These were all things that broke her sweet little heart. She has been working very hard (exercises every day at school and home, physical therapy at Rising Star each week, seeing a chiropractor weekly, taking a dance class, along with her ECP therapy appointments at the hospital 2 times a week) and it is paying off!
We still have a way to go. There are still things she cannot do, or things that we are hoping and praying can still improve for her. This week we begin to taper her steroids again. We are really looking forward to this. We are hoping that as her swelling goes down, she gains even more mobility. She has lost a little bit of the extra weight and swelling, but she is still pretty puffy. We are hopeful and really looking forward to the days when she no longer has to be on them. Of course, we also have to be very careful as her doses decrease. We have to make sure she does not go backwards in any way. It is a careful step down that requires real honesty…no matter how bad we want to get rid of the steroids.
This week we not only celebrate Thanksgiving with so much to be thankful for, but Friday is also Erin's 11th birthday. It is also Frank's birthday. In case you need a quick reminder….Frank is Erin's donor and they share the same birthday! Pretty remarkable if you ask me;) We are very thankful and very happy.
Also, we have a link that we are sharing with you for a quick video (about a minute long) that Kevin and I shared with the girls a few weeks ago. It shares some pretty big news….there is going to be one more Potter baby. In June, our family will have a 15-year-old Annie, 11-year-old Erin, 4-year-old Mary, and a new baby. We will find out in January just who we are expecting;)
So this Thanksgiving we are overflowing with gratitude. So many people, achievements, and blessings to thank God for. We hope you all can feel the love we feel. Thank you for your continued love, thoughts and prayers. Please keep Erin in those thoughts and prayers as we want to continue see her improve and, of course, keep her cancer-free.
Happy, happy Thanksgiving!
Much love, Kevin, Jeni, Annie, Erin, Mary and Baby Potter xoxoxoxo