We have been quite busy lately with lots of ups & downs along the way. On May 5th, we had a wonderful histio fundraising meeting here in Birmingham where “The Bix Fix” movie was shown. There were a number of histio families from across the Southeast that were able to attend. It was great to be able to meet with & support one another. Many of us have talked & emailed over the last several years but had never met in person. We were also able to raise much needed money for the Histiocytosis Association of America (HAA) for research funding. I really appreciate those of you who were able & willing to donate to the HAA on behalf of Erin. You will never know how much that means to us!
Since the meeting, we have been on-the-go almost non-stop. As soon as school was out, we took off for a week-long family vacation & had a blast, but it didn’t stop there. We have been taking mini-vacations almost every weekend since—going somewhere fun & exciting for the girls & our family. It is amazing how much you can pack into a weekend. Megan & Erin have missed so much over the last 2 years & we decided this summer we would try to make up for some of it & just have fun. It has been great!
We did have quite the scare with Erin in May. She began having pain in her neck again & had an episode where her neck was bent to her shoulder again due to pain. (Remember that was what originally sent us to the hospital in 2005.) We were back in the hospital immediately for them to run a battery of tests. Thankfully, the lesion still appears dormant & we are believing the pain is from nerve damage. We go back again the end of this month for more testing & are still praying that all is well. She was scheduled to have her port removed at the end of May; however, that was postponed for awhile until we know for sure about this neck pain. Other than that, she has been very active & doing WONDERFUL!
I was devastated to recently learn of another histio victim here in Birmingham. A precious 18-year old girl who had fought a valiant battle against histio & had been in remission for years contracted leukemia as a result of the chemotherapy she had taken years before to battle histio (secondary leukemia). She was graduating from high school & planning to go to college this fall. However, her life was cut way too short as she lost her battle to this cancer beast in just a few short months.
This was a grim reminder that just because our children are successful in obtaining remission from histio it does not mean their battle is over. They face years of uncertainty – teetering on the edge – threatened with relapse & with contracting other types of cancer because of the treatment they undergo for histio. It is so important that we step up to the plate & fight for a cure for this terrible disease. The only way that will happen is to secure funding for research & that comes only from private donations. Just in the last two months, so many of our histio warriors have earned their angel wings – Tia, Levi, Zachary, Wesley, &, this past weekend, 15-year old Nathan. These are only the ones that I know about. It just breaks my heart. I don’t want to see another victim lose their battle to this dreadful disease & I certainly don’t want it to be Erin!!
It is so easy to look at Erin – especially right now – and think that there is absolutely nothing wrong with her – to forget about & ignore this dreadful disease. You can’t see the ugly beast that is currently lying dormant in her body. We hope and pray it stays dormant forever – but the only way to know that happens is to FIND A CURE!! At our meeting on May 5th, we talked about the very fact that most histio kids don’t look sick. They don’t all have bald heads & sunken eyes & swollen bodies from their treatments -- but looks can be so deceiving!
I have never been one to ask for help. I am a pretty independent & private person – as most of you know. But when it comes to fighting for the life of my child & all these other precious children – I will ask, plead & beg for help to save their lives.
Will you help? You can make an online tax-deductible donation directly to the HAA by visiting their website (www.histio.org). Your dollar just might be the one that helps save the lives of all our children.
We will continue to try to raise awareness of this dreadful disease while trying to maintain a normal life & enjoy life to the fullest with our precious girls. Be sure to love your children today -- give them an extra hug, tell them you love them, spend time with them – just enjoy them. They are God’s gift to us & we are not promised another day with them. Give thanks for God giving you the privilege of being their parent.
Thank you for loving us & continuing to pray for Erin & our family.
