Jack Pottebaum's Journal
Happy Thanksgiving 2013!
Written Nov 21, 2013 10:35amJust a note to say that our family is doing well, and we are grateful!
Jack is enjoying 2nd grade and Lucy loves Kindergarten. We have a couple of smart, funny, "normal" kids and are proud of them both.
Jack still goes in once a month to have his blood tested, and this month his numbers are perfect. If you were to compare his total blood count to any "normal" 8 year old boy you would not be able to tell which kid has kicked cancer's booty!
This month we also met with the Orthopaedic surgeon due to Jack's tip toe walking. Since beginning the tip toe walking just after his treatment began in 2010, a side effect of the drug Vincristine, it is not only a habit but has become structural. Jack has done physical therapy, wears AFO braces, had serial casting and sees a chiropractor monthly. While we see short term improvements, they do not last. We have opted to have his Achilles tendon surgically lengthened in early 2014. It is an outpatient surgery, and Jack will have walking casts for 5-6 weeks.
Overall, life is good. We are grateful for our blessings, and we count them all - big & small. Including you, who continues to check in on our family nearly 4 years after this journey began. Enjoy the upcoming holidays with family & friends. Celebrate, love, hug and be calm.
And a friendly reminder to continue to help others, be kind, and please keep those facing a struggle of their own in your thoughts & prayers, especially through this holiday season.
with much love & gratitude, erin
Jack is 8, and life is great!
Written Jul 13, 2013 10:20amWhere does the time go? I cannot believe that it has been nearly 5 months since Jack's last treatment. I am happy to report that Jack is doing AWESOME!
Jack had his medi-port removed from his chest on May 24th! This means we can give him Tylenol, ibuprofen and NO ER visits if he has a fever. We are so out of practice on using Tylenol & ibuprofen that we still try our natural remedies for pain relief before giving him a dose of anything. And, he hates taking medicine of any kind. I cannot say I blame the kid! His monthly blood draws come from a vein in his arm. Last month there were a lot of tears, but as we have learned from experience it will get better with time.
In a moment of excitement, we told him that since he no longer as a port he can play whatever sport he desires ... Of course the kid chose tackle football! Mom is not ready for this, but Dad is excited. We have a long way to go with his physical strength, but he is working on it and is determined. So this Fall we will be busy with Jack playing football & Lucy playing soccer. Looking forward to the chaos!
Physical Therapy is helping with tip-toe walking, but it is a "two steps forward, one step back" process. It is part habit since he has been walking on his tip-toes for 3 years and part tight calves, hamstrings & lower back. We are on a waiting list to see a Neurologist. We are wondering how extensive the nerve damage is from the Vincristine that he took for 3 1/2 years. If that doesn't get us the answers we need, then we will head back Ortho and hope for the best!
The summer started off crazy and it hasn't slowed down since! The kids spent the first weekend of June with Grandma & Grandpa Pottebaum, while Eric and I went to Lake Tahoe for Eric to participate in America's Most Beautiful Bike Ride with Team in Training. Eric & his team rode 100 miles around Lake Tahoe. It was amazing! Eric did an awesome job, and all while honoring Jack and all of the other cancer survivors & Hero's that have earned their angel wings. Eric has loved his cycling experience and plans to do AMBBR again. Give us a call if you would like to join him! THANK YOU to all who donated! We appreciate you!
On June 9, Jack turned 8 years old! He has grown into every inch of his 8 year old self, and reminds me often that the days can be long, but the years are short. Wise beyond his years, but still a "normal" 8 year old boy. Jack is 4' 6" without walking on his tip-toes, and 72 pounds of pure boy. He hopes to be taller than Eric. Time will tell!
Jack attended Camp Hope. A camp for kids that are cancer survivors. A full 6 nights & 7 days. Away from home. In the middle of Kansas. If you would have asked him if he was excited to go before camp, he would have said "No. My Mom is making me go". We drove literally to the middle of Kansas to drop him off, and he couldn't get rid of us fast enough. Jack had days full of adventures, fishing, swimming, crafts, and making new friends (other cancer survivors). We packed a set of clean clothes for each day in a large baggie for easy dressing & keeping his suitcase organized. When he got home all of the bags except one were still in his suitcase. He put on clean clothes to come home! The kid did not shower once. Did not brush his teeth. Ate too much ice cream and not enough fruit & veggies. He LOVED it! And it made my heart smile that he did so well away from home. We couldn't talk to him the entire time, and if we would have I am sure I would have been out the door to pick him up within minutes of hanging up. It was much more difficult for Mom. We sent a daily email and care package, so he knew we were thinking about him. Needless to say he cannot wait to go back in 2014!
The same week that Jack was at Camp Hope, Lucy attended a Safety City Camp, Cheerleading Camp, and played with new & old friends. The cheer camp was her favorite! At the end of the week, the girls performed at a Kansas City T-Bones Baseball game. It was a lot of fun to watch & Lucy LOVED it!
The summer has also included a trip to Iowa City, our annual 4th of July celebration in Okoboji, visits from cousins and fun in the sun! Looking forward to celebrating Lucy's 6th birthday on August 7, and school starts August 15. We will officially have a 2nd grader & Kindergartner! Life is good. We are blessed.
While we know how fortunate we are to be able to say "Life is good", there are so many other people, too many other people, that are still fighting, with gloves off. And then there are the families that are dealing with the pain of losing a loved one that has earned their Angel Wings because of this terrible disease. Plain & simple - cancer sucks! We must find a cure.
There is a local family that has become near & dear to our hearts, and they are needing thoughts, prayers, light, love, positive thoughts and HOPE right now. You can read their story here: http://www.caringbridge.org/visit/bradenh. This family started Braden's Hope for Childhood Cancer, an incredible organization to help raise awareness for childhood cancer. I encourage you to read their story. It will touch your heart.
Thank you for stopping by. We appreciate you. I can't say it enough ... You make the world a better place.
Much love, hugs and smiles,
Written Feb 18, 2013 9:52amThis is the day we have waited over 3 long years to arrive ... Today, 2/18/13 we can call Jack Jack the Super Kid cancer FREE! This day comes with a lot of emotion, but most of all ... Joy!Jack, at the age of 7, has no idea the amount of strength & courage he has shown over the past three years. He thinks it is normal for every child. He has no idea how many people he has impacted or inspired. Jack is an amazing kid, and a "Certified Cancer Butt Kicker".Lucy, at the age of 5, has no idea that we have asked for her patience and understanding more than what a "normal" family would from age 2 to 5. She is our sweet & spicy girl, but first and foremost an incredible little soul that has been a "Super Sibling" for the past 3 years.To all of you, yes YOU ... Every single one of you who has been with us from the beginning to those of you that met our family recently ... It is difficult to express in words the amount of gratitude we hold in our hearts for your thoughts, prayers and support. Especially our families, who have been our rock. Your constant love & support has lifted us up and helped us find strength we did not know we had in ourselves. Thank you.Jack will continue with monthly blood draws for the next year, then it will go to every six months and then to once a year. In 2018 we can call Jack CURED! The medi-port in his chest will be removed in May 2013.I will update as milestones happen in Jack's life, so please check back every so often for updates.Again, THANK YOU!We plan to continue to "pay it forward" and do what we can to support children's cancer research and other families directly impacted by cancer. If you wish to help us, Eric is currently fundraising for The Leukemia & Lymphoma Society: http://pages.teamintraining.org/mid/ambbr13/pottebaumridesLots of love, hugs & smiles,Eric, Erin, Jack Jack the Super Kid and Lucy