A gift of "Relief" for the Bell's
I want to begin by thanking you for taking the time to read this story and willingness to contribute to this very special campaign. Many of you will be introduced to the Bell Family for the first time without knowing their story or why we have created this financial campaign for them. I am grateful to introduce you to the Bell Family.
John and Colleen are without a doubt, the most loving couple, strong in their faith, and devoted to their family, friends, and community. They have been blessed with four incredibly loving children. Kylie, their oldest, a swimmer and water polo player at Beckman High School and servant to her family and God. John, second in command, member of the Socal Water Polo Club, gentle spirit and fearless fighter. Taylor, 12U Socal Water Polo Club player, spunky and full of energy, admirer of his older brother. Little Holland, youngest of the four, connected deeply to every sibling.
For the Love of the Game
I met John (dad) just like most of you did. He has volunteered to coach for Socal Water Polo Club because of his love for children and the sport. He first entered my life when we coached Splash Ball together. He then helped the club and community launch Water Polo Lite which helps transition older kids into our 12's and 14's who have limited experience in age group polo. He literally helped build Socal's youth program! The last few years he worked directly with the 10 & 12 under boys, providing those young minds with strong fundamentals and a balance between the desire to win and a beautiful thing called "life."
Why we are here
2 years ago, John and his family were enjoying the highs of a great season of water polo up in Palo Alto for Junior Olympics when his oldest boy, John, began to not feel well for the first time. He started having chest and abdominal pains in August. After all testing, he was diagnosed with Ulcerative Colitis in October. Doctor's tried 2 different drugs from November to January that didn't help at all. He continued to lose weight, miss school, and his stomach issues increased dropping his weight to 93lbs. He was then hospitalized at CHOC for 10 days and started him on his 3rd drug. They experienced their first remission until the following August. At the end of JO's, it came back and with a vengance. Doctors retested him and came up with a more specific diagnosis of Uclerated Pacreatic Coloitis. He began infusion drugs in September and those drugs were unable to help him because his body is not absorbing nutrients. This is a big part of the battle. He has tried many diets to see if they can help, but it's been a challenge to keep the weight on and keep the healthiest environment to reduce inflammation. Currently, the biolgics haven't been a match for John. He has tried them but his system isn't responding to them. This week, he will be trying the last biologic available to him where they will give it for 8 weeks to see if this drug works for him. If it doesn't, he will need surgery to remove the colon and intestines, trying to give his body rest. At that point they will try to rebuild those important parts to his system. Our hope is they can get the inflammation under control so that our John can get back to school, back to the pool, and back to being able to just be a kid.
At the same time, their beautiful daughter, Kylie, had a Grand Mal seizure. No one can be certain the cause, but she will be treated until she is 18 and will continue to be monitored. While the cause is unknown, if we can relieve any stress for this family, we know that will help with everything.
The only gift they really want is the healing of their son. They are in wonderful hands at Cedars in LA and in their trusting Lord. However, this beautiful family needs immediate relief so they can use all of their energy for their children. I feel that if we can free up the financial burden, that is the second best gift out there! John is the insurance carrier for the family and has 18 months of Cobra left. His insurance is a great program that allows for his son to see any specialist, but his monthly cost for this policy is 2k a month. In addition to that, they have a 12k deductible for the year. That means he pays a minimum of 36k out of pocket for the year. They also have a challenge with their prescription coverage because the policy is written to be flexible. They can be charged as few as $5 for a prescription or up to 30%. Unfortunately, they did just receive a 50k bill that they think should be covered under their medical policy, but it may fall under the prescription policy because it was an infusion. As you can see, these numbers can make any person feel overwhelmed at the thought of paying this. The most overwhelming feeling comes from the fact that their deductible restarts on January 1st. This is why we must all have a sense of urgency to help this family. John is about to embark upon a very costly and risky course in his journey. With one drug left and possible surgery, both of these options are currently staring this family in the face for the 2018 year. They have made this work so far but at a serious cost to the family.
We know that this journey will be a long one, a rough one, one that challenges your soul and rocks you to your core, . I don't worry about them because their love is fierce, but I don't want them to do this alone!
Please, consider supporting the Bell Family this holiday season. We are looking to give the Gift of Financial Relief this Christmas. We would greatly appreciate showing them how NOT alone they are.
Thank you again for learning about this special family. Please feel free to reach out if you have any questions.
Socal Water Polo & Swim Parent
While watching our 11 & 17 year olds compete in water polo at Junior Olympics this week at Stanford, we have spent a lot of time reflecting on the physical and emotional journey this last month has taken our family on...culminating with so much joy and appreciation this weekend.
We have been the receiving end of an unbelievable and overwhelming amount of prayers, support, dinners, sitters, special fasts, finically assistance, etc. that have been showered upon us over the last couple of years, months and most recent days. The gratitude we have is unexplainable and brings us to tears often, because we couldn’t make it through the way we have without the active support that so many of you have been giving.
After battling extreme weight loss, high fevers on top of failing every medication out there for his disease, every diet and other issues, we had to admit John to the hospital again the last weeks of June. We had been talking about surgery by the end of summer, but it was evident that we could no longer wait, so the doctors made the necessary arrangements to squeeze him into the operating room on June 26th. They performed the first of 3 surgeries to remove his colon and rectum and put him on an ostomy bag for a while. The following surgeries over the next few months will create an new small replacement colon and then finally reverse him off of the bag. The surgeon was very happy with how things went and found that even with all the mess that his colon had become, there was no leakage or deterioration that would cause other issues and the pathology reports show no signs of other diseases.
John has kept his positive attitude and he quickly won the hearts of all the nurses and staff. He has faced his fears of the ostomy bag and is taking charge in a way that makes us so proud. He has his moments of depression, but he knows this isn’t the worst thing in the world. Each day that passes we believe he realizes that it feels so much better to be able to eat, sleep and go places with this bag than to live the lonely way he has for years. Each day is better than the last and he is beginning to plan new adventures after canceling and missing out on everything for far too long. He has also gained 18 pounds in 5 weeks.
Our hearts will be eternally grateful for the simple and kind communication of a wonderful GI doctor that has changed our lives and shown a light on what true “health care” really means. Dr. Rabizadeh and his staff at Cedars are exceptional at what they do and how they do it with kindness like we have never experienced in medicine.
4 weeks ago, we assumed I would miss this years JO festivities as Johnny probably would be unable to leave the house and then 3 weeks ago Kylie also had a set back as she had two seizures in a week after doing so well for a year and a half. After her wonderful neurologist made adjustments to her medication, she had a nearly clear EEG 2 weeks ago, which hopefully means we have found a more stable place with her medication. It also allowed her to be cleared to continue with her opportunity to play with her team and earn a silver medal this last week at Junior Olympics after so much hard work and preparation!!
It was exactly 2 years ago, after our trip to Junior Olympics at Stanford that John became sick and it was our last family vacation we all took together and this week was our first vacation all together since. Oddly enough, it was back to JO’s at Stanford with our crazy supportive SoCal family, whom we could not have made it through without their continuous friendship and support.
Again, thank you to each and every one of you that have reached out and supported us through this continued fight for John and Kylie’s health. We are forever indebted to so many of you. Thank you today and thank you always for everything!!!!
John & Colleen
We had no idea when we threw our 3 kids in Splashball 8+ years ago that we would find friendships that would love us and sustain us physically, emotionally and financially as we struggle with these battles for our children’s health, but we could not be more grateful for that decision. We know our children have learned mental and physical strength, perseverance and courage through this sport that will carry them through these difficult trials. Your love, encouragement and support is the icing on top!!
We know that through their mental strength and their faith that God knows them and He knows the bigger picture of who they are and who they are going to become they will have opportunities to touch the lives of others the way each of you have touched ours. We hope those of you who we have not been able to thank face to face, know of our humility and gratitude for what you are doing for us and know that we thank you in a million heartfelt silent thank you’s each day. We are grateful for more than just the financial support, because it is the connections and words of encouragement, the knowledge shared of your experiences with your trials, and also the opportunities for us to do more to support and sustain our family through your assistance that keep our emotional needs in balance. We promise as a family that we will do our best to pay it forward!
We love and appreciate each and every one of you!! Thank you again.
Love now and always,
John, Colleen, Kylie, John, Taylor & Holland