Yesterday was Ava’s monthly CBC and check up appointment. Of course I had many questions. One of the questions is why does she still have bumpy lymph nodes on the one side of her neck? Their answer is since her immune system is still recovering from all the 2 1/2 years of chemo she endured it will take about 6 months for her system to start to get back into a normal range, but they are monitoring them as am I. They did a slide of her blood work to make sure there was no suspicious cells just to be sure, and there was nothing suspicious thank goodness. Her blood work was ok, some counts down and some counts up. Her ANC dropped from 1650 to 1380, WBC up from 3.37 to 4.01 and Platelets went up from 183 to 203. So overall still good numbers. We don’t go back now for another month. She still has to continue her 2 day weekly bacterium meds for the next 3 months though.
Our past weekend has been nothing short of amazing and fun filled. Its probably the most we have done as a family. Let see where do I begin. Thanks to LLS (Leukemia And Lymphoma Society), they invited our family to their National Light The Night Kick Off party at our Nationals Stadium park. We got to listen to some amazing and inspiring speeches and then got to watch the game and eat good food and enjoy great company. Thanks LLS, we are looking forward to our third annual LTN Team Ava walk in October!
This past weekend an amazing man that we all know and love by the name ‘Tattoo Tom’ completed the Mohican Trail 100 mile run to raise funds and awareness for childhood cancer and to honor his daughter Shayla and all children who have fought and lost their battle and who are still fighting and for this who have won like Ava. For each of the 100 miles he honored a child. Ava was his inspiration for mile #75, he had this photo of her. He also started the childhood cancer organization StillBrave.org which he raised over $69K for during his race. He truly is a remarkable man, who gains his strength from all the children that have fought and are fighting the evil childhood cancer. Thank you Tattoo Tom for all that you do, all you have done and that you will continue to do. You mean a lot to our family and to many families.
Then for the next 3 days we got to spend it with a bunch of wonderful people that came all the way from Ireland, and also the HopeCam founder and other amazing people from his organization. HopeCam is the organization that provided Ava the ability to connect with her school while she was at home sick during her chemo treatment. The founder of HopeCam Mr. Len Forkas participated in a race called RAAM (Race Across America – a 3000 cross country bike race) back in 2012 for HopeCam. While participating in the race he met a man from Ireland that was also participating in the race – Mr. Joe Barr. Joe unfortunately had to drop our of the race while in the mountains of Colorado due to altitude sickness, where he almost lost his life. Joe and Len shared an unfortunate common bond, both of their sons were diagnosed with a form of childhood cancer. Well over the next 2 years Joe and Len spoke and Joe ended up participating in RAAM again this year for HopeCam, in hopes to bring HopeCam to the sick children of Ireland – his home country. Mr. Joe Barr with successfully completed the race this past Saturday and he was 2nd overall in his age group 50-59!!! We were fortunate enough to meet him at the finish line where he got to meet most of the children that he called from the road while participating in his race. He called Ava Day 3 of the Race, here is the video: https://www.youtube.com/watch?v=SbB2J8VI8WQ
The look of his face when he ended the race and saw all the children that he was riding for, was a moment of pure joy and you could see such happiness in his face. Here is the final portion of his race and Ava is at the end of the video, where he presented her with his sunglasses that he rode with. https://www.youtube.com/watch?v=ZuIWc8kqONo
We got to meet his amazing team members that helped him with his race and his success. All such amazing people!! We especially bonded with Rose :) She was the only woman on the team of all men, god bless her heart! She was very happy to be around other women, ha!
Here is some photos of Ava with Joe Barr and his Team Members from Team Joe Barr:
Ava with some of Team Joe Barr
Ava and Joe Barr
Ava and other HopeCam children with Len Forkas and Team Joe Barr at the RAAM finish line.
Then the next day we were invited to a party at the HopeCam founder’s home to celebrate Joe’s successful journey across America. We had wonderful food and so much fun. It was so nice to get to know his team members, they are truly so nice.
Yesterday we were invited to attend the last night of the RAAM awards. I got to speak with Matt Forkas, a childhood cancer survivor. He was diagnosed with Leukemia when he was younger and today he is a bright young man at the age of 21. He was such an inspiration to talk to. There was an older gentlemen who’s age was somewhere between 70-79 and this was his third RAAM event that he participated in. He was so motivational and during his speech he said that if he can do this 3 times if you are sitting on the couch you can get your self up and do something with your life. Then there was a father daughter team who won and award, her father who only has one arm, yes one arm also completed RAAM – WOW! Then there was the 2 man team, what was special about them you ask, they were both in wheel chairs, and they completed 3000 miles across america using there arms!!!!!! Then came Joe Barr, first Mr. Len Forkas said a speech and presented a Proclamtion from the Governor of the State of Maryland declaring June 23, 2014 ‘Race Across America. Team Ireland and HopeCam’ – American Day. Then Joe brought up our sweet Ava on stage with him, the crowd sweet silent to listen to his speech, he spoke of why he did this race and HopeCam, then he spoke of Ava and how she just finished treatment for Leukemia 3 months ago. Ava got to hold Joe’s award that was presented to him. Joe received a standing ovation, and I was in tears. After the speech we gave our hugs and said our sad goodbyes. I have made over the past 3 days such amazing new friends, people that I did not know but now feel like they are apart of our family now. We will planning a trip to Ireland in the near future! Thank you Team Joe Barr, and thank you HopeCam!
Ava, Rose and Joe
Len Forkas, Joe Barr and Ava holding Joe’s award.