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!

1623718_769551436398397_5723164509498554564_n

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

Team Ava – Alex’s Lemonade Stand Event 2014

This past Saturday we held our second annual Team Ava Lemonade Stand for the Alex’s Lemonade Stand foundation.  And we met our goal of raising $1000!! The amount will be reflected on Ava’s Lemonade Stand fundraising site once the Alex’s Lemonade Stand foundation updates it.

Thank you to everyone for stopping by and donating and donating online, to help ‘Mix Pour and Find a Cure’.  Also thanks to Wegmans for donating our supplies!!!  We will be doing it again next year!

Ava_LemonadeStand2014-13-XLphoto-7

Third OT Visit

So today Ava’s counts dropped from our last visit the doctor thinks it because she is fighting off an Upper Respiratory Infection, as she has a nasty cough and cold. Her counts went from ANC of 2200 to 1650, WBC 4.57 to 3.37 and Platelets 236 to 183. The doctor did not have any concerns because of her recent cold. We do not go back again until end of June for another check up.

A lot has happened this past month mostly great and then some heartbreaking news:

We got to go to Ocean City a few weeks back and stayed at the Believe In Tomorrow House by The Bay. We were there only for a few days, but we made the most of it by going to the beach to pick up sea shells, went to Assateauge Island, went mini golfing, ate at Mancini’s and watched all the old cars for Cruisers weekend.  Also the sunsets were AMAZING!!!!  Thank you so much Believe In Tomorrow for such a fun time!!

We also went a local Children Cancer organization – Growing Hope , to their annual picnic. It was nice to see the nurses and doctors outside of the office and in a relaxing fun environment. We had great food and so much fun!!

We also attended our first HopeCam 5K walk/run and raised money for this amazing organization. This is the org that provided Ava’s school with the means so that Ava could see her class and teacher when she was at home sick during treatment.

I also had a wonderful mothers day with my little one and husband. :)

In other news, last year in August we were fortunate to meet an amazing little boy – Ne’Vaeh and his family. We got to spend time with him and his family at Ocean City with the Believe In Tomorrow organization.  I learned through his mom during that time that he was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) which is a very rare tumor located on Ne’Vaeh’s brain stem which is very difficult to treat and surgery was not an option..  The prognosis for patients with DIPG is very poor, with most studies indicating that most children will not survive past the 12 months they were diagnosed.  Well Ne’Vaeh was a fighter and he fought up until May 23, when the lord welcomed him into Heaven and he has no more pain.  I was very sad to hear about his passing, as even though our time spent with him and his family was not a lot, he was such an amazing little boy with such a big heart and him and his family really captured a place in my heart.  Green was Ne’Vaeh’s favorite color and one of his requests was for everyone who supported and loved him to let off green balloons after his service. So on Saturday May 31st at 3:17 eastern time his family has requested to have the sky flooded with green balloons.  Rest in peace little man.  Ne’Vaeh’s Facebook Page

IMG_2172

*Ne’Vaeh is the little boy in the black shirt and he is their with his family and Ava.  We were all at a horseback riding event together thanks to Believe In Tomorrow.

Second OT Visit

Last month at Ava’s fist OT visit Ava’s ANC was 1750, this month it is 2210, so it’s where it should be considering all the chemo she had endured over the past 2.5 years.

We have done a lot over the past month, her grandparents came to visit that she had not seen in over 2 years, her baba came to visit her, we went to the circus, she celebrated her 5th birthday with all her princess friends and even Cinderella attended, she went to a Tea Party where she saw more princesses and got to do a fashion show, celebrated Easter and saw the Easter bunny, registered for kindergarten, started ballet and tap, she rode a bike for the first time, participated in a 5K and also has been able to go to preschool without getting sick!

So yes we have been busy, busy doing normal things without giving medicines or going to doctors or hospitals.  It’s a weird feeling and it will take some getting used to this new normal, but a great new normal.  I still feel anxious at every bruise I see and every lymph node that becomes swollen, but that is par for the course and I will have to deal with the anxiety.

We don’t go back to the doctor until end of May now and we have so much more fun planned this month too including a visit to the ocean, ballet, a picnic, seeing friends and last day of preschool celebrations.

We have some more fundraisers coming up to including Alex’s Lemonade Stand, LLS walk and CureSearch Walk too.

Here are the organizations we wish to thank this past month for adding super fun into our lives, please consider donating to one of these orgs or open your wallet and heart and donate to all of them!

Thank You for your continued support and prayers for Ava.

IMG_4132

 

No more Tubey!

Today Ava had surgery to remove her portacath.  Ava has had her tubey (that was the name for her portacath) since December 10, 2011. I remember that day all to well when she went in for surgery and they placed a foreign object into our then 2 year old little girl.  Today she had the same surgeon that she had back in 2011, and he removed the port.  She has 2 small ouchies, one on her neck (where the catheter was) and one where the port was placed in her chest. It was a quick surgery and it was successful.  We got to the hospital at 630 am and surgery began at around 815am and we were home by 1030am.  She will be sore for a few days, it will feel like someone punched her. :( But it is out, no more foreign object in our now 5 year old little girl.  We were happy to see the port removed and have our daughter’s body whole again.  So now we relax and she will get stronger and better everyday.

Thank you for your continued prayers and support.