Team Ava LLS Light The Night 2014

Our fundraising goal this year was $3700 so that we could reach raising $20,000 for LLS with Team Ava over the past 3 years we have held the walk.  And I am very happy to say that thanks to all of our amazing Team Ava LLS team member fundraisers this year and to everyone who donated and our fundraiser that was held at Blackfinn – Ameripub in Merrifield, we well surpassed our initial fundraising goal of $3700 and we raised – $5000.25!!!! Making our grand total of fundraising over the past 3 years for Team Ava and LLS at $21,352.99!!!!!

I need to say a very special thank you to Michelle Resnick who is the Marketing and Sales Manager at Blackfinn – Ameripub in Merrifield.  Without her we would not of met our goal.  I first met Michelle and the wonderful team at Blackfinn a few months ago.  They held another fundraiser for an amazing childhood cancer organization – St. Baldricks.  She contacted me and asked me if Ava would be the honored St. Baldricks hero for the night.  Of course we said yes.  We have never been or heard of the Blackfinn establishment before or have been there until the night of the St. Baldricks fundraising event. The fundraiser was nothing short of amazing, local firemen coming by to show their support for Ava and St. Baldricks, Firemen band bag pipes, random people signing up to shave their heads or beards off, and meeting the most generous and kind-hearted staff at Blackfinn including Michelle.  You can read more about that fundraiser here: St. Baldricks Event

I then approached Michelle about a month later letting her know that we have another fundraiser coming up and explained what it was about for Team Ava and LLS.  There was no hesitation to help us with our fundraiser. In less than a week to go before the LLS LTN Team Ava walk, she managed to go to businesses and obtain amazing silent auction items for our fundraiser!!  The night of the fundraiser was a huge success yet again!  Our good friends that we met from the first fundraiser from Firestation 30 were there to support Team Ava again, as well as many friends and random people.  That night we raised over $1200 in 3 hours thanks to the amazing work of Michelle and the folks at Blackfinn.

I can say through these past 2 fundraising events at Blackfinn, we have met some amazing genuine and kind-hearted people (that is very rare in this day and age), and I have made some very good friends.

If you have not been to Blackfinn – Ameripub in Merrifield, I strongly suggest going as the atmosphere, food and drinks, and most importantly the people are outstanding.  Not to mention they hold some really good parties and events!  Thank you again Michelle and Blackfinn for helping us reach our LLS Team Ava goal for 2014!!  We look forward to our future events with you all, and friendships.

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October 2014 Update

On October 13 we went to Ava’s monthly OT check up and her numbers were good, but she was fighting something by the looks of her counts.  An ANC of 6000 and WBC of 11. But she also has had a cold and felt yucky so her ANC would be higher but all her other numbers were really good.  We did find out that she needs to re-vaccinated for DTAP and IPV (but she needs though shots anyways between 4-6 years old).  She does not go back now until next month for her 8 month OT appointment.

This past month has been rough on Ava’s little immune system. She first got a sinus infection and had to take 10 days of antibiotics, and then she felt great and was able to go a whole week at school! But then last weekend she started feeling yucky again and we went back to her pediatrician and she was diagnosed with an ear infection and is now back on medicine for 10 days, and she has missed all week of school :(  Hoping the medicine will make her feel better so she can back to school next week!

But prior to getting all these yucky illnesses, we had a lot of fun this past month to!

Ava was an honored St.Baldricks child at an event at Blackfinn Ameripub.  The event was absolutely amazing and they made her feel like a princess and us like family – read more here on our fun night!  At this event we met a group of Firemen and women from our local fire department, and they invited us to dinner at their fire station the next night.  Wow – we had an amazing tour and time, Ava got to sit in all the trucks, she got a ride up the big ladder and she got to shoot water out of the hose!!! They also made us feel like family!  Then the following Saturday we were invited for a tour of the White House with a group of local Childhood Cancer Families.  It was absolutely beautiful inside!! We also got to take her to one fall festival where she got to ride all the rides! And she has been busy playing with her new puppy Spot.  She also got to meet up with some old friends and play with them.

The rest of  this month will be fun-filled to with school and fall festivals, as long as we feel good :)  Tonight is our 3rd annual Team Ava LLS LTN walk – unfortunately Ava will not be there as she still feeling yucky. I will write more on this event and our amazing fundraiser we just had and the grand total we raised later.

Thank you for all your ongoing prayers and support!!

September is Childhood Cancer Awareness Month? Really?

Did you know that the month of September was officially declared by our United States President Barack Obama to be officially ‘Childhood Cancer Awareness Month’? – Official Presidential Proclamation here  We were blessed to attend a White House Tour with over 200 other families that were affected by Childhood Cancer this month, and receive an official Proclamation.

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I posted as much as I could to raise more awareness this month about Childhood Cancer on Ava’s FB page.   We also did the Whipping Childhood Cancer challenge.  I challenged 46 of our my friends via Facebook, and only my husband and wonderful cousin accepted the challenge for the pie in the face all for childhood cancer.  About 7 others said they would donate – hope they did.  The other 30+ friends I never heard from, which they either did not see the post or really don’t give a damn, which makes me sad as kids are dying every day because of Cancer – it’s the NUMBER 1 KILLER OF CHILDREN!!!!  My husband also challenged his friends, and no one responded sadly :(.  I find as the years pass since Ava was diagnosed in 2011, that less and fewer people seem to care or want to forget.  Well we can’t forget, as Ava will have long-term side effects because of the 2.5 years of chemo injected into her little body.  She will never be a normal child like your healthy children are.  Thats the plain truth and fact folks.

So yes I wish I could have done more this month to raise more awareness, but its hard when people start not to give a damn.  Our dear friend Tattoo Tom with the Stillbrave foundation – he has a tattoo on his arm that reads ‘Talk is BullShit’ – all because 10 year old Gabriella Miller who passed away October 26 last year from brain cancer stated the true fact that ‘talk is bullshit!’ when it comes to childhood cancer.  “STOP TALKING AND START DOING” her words – Please watch this video of this little girl who is now in Heaven sharing her message.  

So true, so many of you talk the talk but its all crap. You need to do something to make a difference.  Reach out to your friends that are going through this or have gone through this with their child and see how they are doing, donate to a childhood cancer foundation every year, and become involved so that our kids can stop dying with this terrible disease and hopefully one day our own Government will give more than 4% of funding for childhood research – such a pathetic percentage.

So while the #whippingchildhoodcancer challenge was a failure, I am also beginning to wonder about our upcoming LLS TEAM AVA walk.  We have only one friend signed up to walk with us this year, when previous years while Ava was in treatment we had 20+ team members.  Again I begin to wonder do people think because Ava is done treatment that its OK?  Well it’s not OK, it will never be OK.

Also in the news this month an NFL player’s 4 year old daughter was diagnosed with childhood cancer.  She had a successful surgery with the tumor being removed, but yet she will have a long journey ahead of her.  While I am not happy about another child getting diagnosed with cancer, I am glad it’s getting the media coverage it so desperately deserves so people wake up and see that CHILDHOOD CANCER IS NOT RARE!!!  But it should not be getting media coverage because of a famous sports figure, it should be getting coverage because our kids our getting diagnosed daily and dying with this disease, and our own powerful government does not give a damn about funding to help find cures to save these kids.

So with all that said, yes September was and will always be the month for Childhood Cancer Awareness.  So wake up people – as a sweet little girl who lost her life all to soon said – Talk is Bullshit.

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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