St. Baldricks Event Sept 2014

Yesterday our family was invited to be an honored St. Baldricks family at the Blackfinn Merrifield Ameripub.  What an amazing time and well run event!  Upon arrival we were greeted by the staff and Michelle Resnick – who coordinated the event.  They took us to our VIP table and we ordered some very delicious food.  The mac n cheese is AMAZING!!!  This was our first time at this establishment and we will definitely be back again as the staff and the food and the location was all top notch – highly recommend going if you have not gone already!

We then met an amazing man at the event, His name is Matthew Hickling (nickname is Matty Burns) and he is a brain cancer survivor.  13 years ago while attending art college at New York he was diagnosed with brain cancer at the age of 21, 6 months from graduation.  After he kicked cancer to the curb, he returned back to school completed and now makes children’s books.  I guess he is a regular at Blackfinn and when he heard about the event and Ava’s fight with cancer he cried and wanted to do something special for her.  Well he did, he painted a picture of her – a replica of her holding her I won sign, and he also made a shirt with the painting on it and wore it to the event.  He met with our family and gave Ava the original drawing, a shirt with the drawing, and one of his children’s books.  Oh and he even shaved his head in honor of Ava!  I can’t tell you what an amazing man he is.

We then met the Captain of the Fire Department Mr. Matt Burns, he brought his entire fire crew with him!!  And he shaved his head (which he had a shamrock painted green on the back), and went one step further – shaved off his mustache that he has had for his entire life!!  Such an amazing and generous soul.

 

We also met one of the Blackfinn co-workers – Mike and his 1 1/2 year old beard, and shaved that off to!  I could not even recognize him!

Ava also got to shave a participants hair off! She was super excited to do that.

Next it was my turn to say a speech and say why St. Baldricks is so important.  Its not easy quieting a loud bar with over 150 people in it, but I did it and shared Ava’s story and why St. Baldricks is such an important childhood cancer foundation and to donate donate donate donate so we can find cures for these children.  Ava got loud cheers from the crowd :)

We then got to listen to the amazing “The Northern Virginia Firefighters Emerald Society Pipe Band“.  Wow is all we have to say, such beautiful bag pipes and drums, made me cry!

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We cannot thank the Blackfinn Merrifield staff for making our family feel so special and for making Ava feel like a true star and princess.  And also to all the Firemen and Women that came out to support Ava and St. Baldricks, and of course to all the people that shaved their heads and donated!!!  If you would like to make a donation you still can at: https://www.stbaldricks.org/events/mypage/11135/2014

September 2014 Update – 6 months OT

Yesterday was Ava’s monthly OT check up and her numbers were really good.  An ANC of 3080 a lot more than 1810. But she also has had a cold and felt yucky so her ANC would be higher but all her other numbers were really good.  They also drew blood yesterday to see what vaccinations she will need to have again, as the many blood transfusions and chemotherapy she had placed in her little body over the past 2.5 years most likely wiped out her vaccinations she did receive from birth to 2 years old.  We will find out next week what she needs to be re-vaccinated for and then work with her pediatrician to get the shots scheduled.  She does not go back now until next month for her 7 month OT appointment.

We had a lot of fun this past month to!

Ava got to meet Bryce Harper from the Washington Nationals Baseball team through Harper’s Heroes and LLS!  Ava’s baba came from Canada to visit her for 2 weeks and we had so much fun!! Ava started kindergarten which she absolutely loves going to school!!!  We went to Ocean City and stayed there for 5 days thanks to some amazing friends of ours and we got to stop in to say hello to the Believe In Tomorrow Home where we stayed last year!!!  Ava went back to her pediatrician that first diagnosed her back in 2011 and we re-established a relationship with them, they were very happy to see Ava looking and feeling so good, not fun for her but felt good for us and normal!  And Ava got her first haircut since she lost all of her hair back in 2012 – that was a big moment for us thanks Salon Khouri!!!  We also got to speak at an Alex’s Lemonade Stand Foundation event to share Ava’s story and raise awareness for childhood cancer and ALSF.  Ava also appeared on an Anderson Cooper 360 segment for Hopecam! Oh and Ava got a new puppy! :)  Phew so much happened this past month, but it was all great and FUN!!!!

The rest of  this month will be fun-filled to with school and fall festivals :)  We are also asking all of you and friends and family to recognize that this month is Childhood Cancer Awareness month.  Please show your support and donate to a childhood cancer organization this month and wear your gold to show your support! I will be writing another post on this soon.

Thank you for all your ongoing prayers and support!!

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Harper’s Heroes and LLS

Last night was nothing short of amazing. Thank to our local LLS organization and to Harper’s Heroes we had such a memorable night! First let me tell you about Harper’s Heroes. Harper’s Heroes was started by the Washington Nationals baseball player Bryce Harper. In 2013, Bryce partnered with the Leukemia & Lymphoma Society and founded Harper’s Heroes. Harper’s Heroes provides children that are battling cancer or have beat cancer and their families with the opportunity to attend a Nationals game, enjoy concessions, attend batting practice on the field, and meet with Bryce before the game.

So thats what we did yesterday :) We got to attend the batting practice on the field to watch the Washington Nationals, and Ava received a ball from the field! Then we went to the press room to meet with Bryce Harper!!!! First Bryce spoke of why he created this organization. His speech was very heart felt. He then met with all the children and their families, and even signed Ava’s baseball for her!!! We then proceeded to the game and had amazing seats and got treated to yummy food, oh and the NATS WON!!!

I was very impressed that this young man whom is only 21 years old and a professional baseball player took time out of his busy life to start this amazing organization and to put such big smiles on these children and the families. Truly he is a rare talent and person, and I can only hope that other professional sports players follow in his footsteps.

Thank you Bryce Harper and Harper’s Heroes, LLS and the Washington Nationals for an evening we will never forget. :)

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August 2014 Update

Yesterday was Ava’s monthly OT check up and her numbers were really good.  An ANC of 1810 a bit down from last month of 1900 but still great!   All her other numbers were really good.  Ava has been feeling really good this past month, as she stopped taking one of her last medicines last month – Bactrim.  It’s nice to have a normal kiddo again. :)  When we go back in September they will talk to us about testing her blood to see what vaccinations she will need again.

We had a lot of fun this past month to!

Ava did a PSA commercial for LLS and our local news station.  It should air in September sometime! Ava had some playdates with her friends.  Ava attended Music Camp at our church for 3 days and had so much fun!  We went to Baltimore and participated in the Casey Cares 5K/1 Mile fun run walk.  While in Baltimore we visited the Baltimore National Aquarium and it was amazing!  Ava had her second dentist visit, her first visit was when she was 2 but because of her treatment over the past few years she could not go until now and everything was great and no cavities!  We also went up to the lake for a relaxing visit and went to go see Ava’s Grandparents in Ohio.  Oh and we gave Ava some big news – that she is going to be a big sister next year!!! She is very excited :)

The rest of  this month will be fun-filled to, we have a lot planned now till school starts up for her in September!

Thank you for all your ongoing prayers and support!!

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July 2014 Update

Yesterday was Ava’s monthly OT check up and her numbers were really good.  An ANC of 1900 up from 1300 last month.  We also had her IGG level checked, which required blood to be drawn from her arm instead of a finger poke and she did really good! Her IGG is in normal range too.  And she gets to stop taking her weekly Bactrim medicine that she was taking for the past 3 months!  So no more medicine officially!!!

We had a lot of fun this past month to!

Went to Hershey Park had the best time at the park and ate way to much chocolate! Rode an ol railway car pulled by an authentic steam engine train! Ava attend a week of bible school, and had the best time ever! And Ava and her daddy attended the Washington Nationals baseball game, thanks to the Casey Cares!  And Ava got a little cold, but is feeling better now.

This next month will be fun filled to, we have a lot planned now till school starts up for her in September!

Thank you for all your ongoing prayers and support!!10516970_10152230769537705_1750864264_n

June 2014 Update

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!

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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.10444706_672070716207695_1339268646110069384_n

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:

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!

Joe Barr – RAAM – HopeCam

Tonight we were fortunate to talk to Joe Barr.  Who is Joe Barr you ask?  Joe Barr is from Ireland and he is an endurance bike racer (whom has won many championships), and unfortunately one of his sons were affected by Cancer as well.  In this video of Joe, he sits down an opens up in an interview; he talks about how cancer influenced his family in the beginning, his entry in fundraising events, his previous experience withRAAM and more. – Joe Barr Interview

Today is day 3 of RAAM -Race Across America - which he is participating and raising funds for the organization HopeCam.  Tonight he called to talk to Ava, as he has dedicated today (day 3 of his ride) for Ava on his journey across America.  He already has completed just over 1000 KM of his long journey and he still has over 3800 KM to go.  Tonight Ava become part of Team Joe Barr and his story.  On his site it says: “The reason we are conquering the worlds toughest cycling race is to raise funds for the charity ‘Hopecam’ which will help children in both America and Ireland. Remember to credit the donation to Joe on the drop down options and all donations are converted from American dollars to your local currency. We need you more than you can imagine. Help these children during the most difficult part of their lives. Every donation will push Joe along!!!”

PLEASE DONATE!!!!!!!  https://www.stayclassy.org/checkout/donation?cid=11770

For the next 8-10 days he will be dedicating each day to a child that has been affected by Cancer and raising funds for the amazing organization HopeCam.  We have never met this amazing man in person, but it was such a pleasure to speak with him tonight.  What he is attempting to accomplish is truly amazing,  HE’S BIKING ACROSS AMERICA – OVER 3000 MILES!!!!!  The Race Across America is one of the worlds most enduring and grueling bike races there is! Did I mention he is in his 50s too!! Truly such an inspiration.

HopeCam is an amazing organization, as when Ava was sick with her chemo treatments she was still able to see her classmates and teachers at her school because of HopeCam. HopeCam provided the technology to her school so that when Ava was at home (and it was a lot), she could skype with her school and still be apart of it.  Whenever she skyped with her school she always had the biggest smile on her face.  The founder of HopeCam Len Forkas competed and completed in RAAM in 2012.  His owns sons battle with cancer inspired him to create the organization HopeCam.  Today they were on FoxNews please watch their clip here.

Also Len Forkas wrote a book that was just released this week: ‘What Spins The Wheel’ – Here is the excerpt from Amazon: :When entrepreneur Len Forkas learned that his nine-year-old son had leukemia, his own life changed forever. In 2003, Len founded Hopecam, a nonprofit that uses technology to connect young cancer patients with their friends at school. Ten years later, Len’s fight against childhood cancer rose to a new level. He qualified as a solo competitor in Race Across America, a 3,000-mile bicycle race that traverses scorching deserts and 11,000-foot mountain elevations. As Len fought to finish the race is just 12 days, an all-volunteer crew supported him around the clock. What Spins the Wheel is a true story about fatherhood and fortitude, business grit and growth – and the power of combining the right mission with the right team to help others.”  Please consider purchasing this book today, it would make a great fathers day gift, and all the proceeds go to HopeCam!

Thank you Joe Barr, and thank you HopeCam!

Video of Joe talking with Ava: https://www.youtube.com/watch?v=SbB2J8VI8WQ