With your help we were able to issue our first pediatric research grant to Children’s Hospital of Philadelphia for $10,000. This grant is supporting two brain cancer projects in Dr. Kristina Cole’s lab. Dr. Cole was Kellan’s oncologist. She helped us find the right project(s) that would not only support research but also had a tie to Medulloblastoma, Kellan’s cancer type.
Kellan Michael Ford March 11, 2016 – June 11, 2021
Kellan went home to God early this morning peacefully in his sleep. It is hard to say goodbye, although just for now. Seeing him truly peaceful just before he passed brought me comfort.
He hung on just a little longer to allow Parker to come to the hospital, to meet his amazing doctors and team members. Kellan’s way to show Parker that he was cared for and loved always.
Many of you have seen glimpses into the precious world of Kellan. Through the beautiful blue eyes of our little angel. He was special, he always was and he found ways to show us all just how special. Kellan continues to remind us we all have precious gifts of faith and love. When you think of Kellan remember to smile, do a crazy dance, and choose happiness – find it in your mess, embrace it, even if for just a moment. Goodness is all around us, even in the worst of situations.
I miss him already. May God embrace, protect and love him until we can meet again.
May is Brain Cancer Awareness Month – we saw first hand how horrible this disease can be. We spent 19 days in the hospital and several of those days in the ICU. Kellan had palliative radiation, infusions to help stop the cancer in his marrow from eating away at his bones, platelet and blood transfusions, lots of pain medication, and we comforted him as he shared he was afraid to die.With the help of 4 teams at Children’s Hospital of Philadelphia we were able to take the trip of a lifetime to Disney/Florida. Uncle Gary and Aunt Rachel thought of everything and with the help of his aunts and many of you we had tons of special surprises along the way. Thanks to Allan Myers Construction for the private flight allowing us to go and everyone that contributed to the plane stocked with goodies.
When we got home we had another hospital stay. We were able to rally again and do one final trip to Ocean City NJ last week thanks to Make-A-Wish Philadelphia. Kellan does hospice the right way!Kellan is nearing the end of his fight. Sunday night I told him how grateful I am for the gift of him and all he has taught me. I told him we would be OK and we would care for his things. He told me he was going to die. I said yes, he will be OK and so would we. This time he wasn’t scared, he is ready.
Today, surrounded by family I asked if he was happy. He looked around and nodded yes. He chooses happy, always.Please continue to pray for him. May God embrace him and guide him home. May his family and friends find peace, hope and happiness.
Kellan Update, April 2021: This has been a tough one to process and to write…Last week Kellan was admitted to the hospital, for a week. He was due for check-in scans to check progress, but we did them scans early since we were admitted.
Many of you have heard Kellan has had unbearable knee and leg pain since early November. During February the pain spread to his arms, sternum, hips and jaw. An early February bone scan was inconclusive. This time around we opted for a PET MRI vs bone scan.
We are heartbroken to share Kellan has stopped responding to his treatment. The PET MRI shows widespread tumor in his bone marrow throughout both legs, and is also in his arms, sternum and hips (and several other spots in his bones). The doctors are amazed he is able to walk/run and is not in more pain.
About an hour after we got the news Kellan had his one on one yoga session with Ms Tonia (yes he is a yogi). At the end of his session, Kellan was asked to randomly selected “his mantra”, he chose “Today I choose happiness.” See the photo below.
**This** (Choose Joy / Choose Happiness) has been my/our mantra the entire diagnosis. Always looking for the good and grateful for all our moments.
This was a gift, a reminder, that you can choose how you react, respond and live. Kellan continues to teach me what true strength means. The next day we also learned his brain MRI shows two new spots son his brain. Yet, his spine MRI remains unchanged.
Now what… We are buying as much quality time as possible to create a lifetime of memories in a matter of months. We have “months” but it’s vague, it could be less, it could be more.
We are starting a new low dose chemo in an attempt to slow the spread. We will know if it’s working in a month or two. Pray for pain free days for Kellan as the disease progresses.
We are holding strong and heartbroken.
Our focus now is Kellan. We are smiling, laughing, dancing, karate, backyard sports, lots of “I love you’s”, mini-golf, board games, spontaneous picnics, sushi and building Legos.
We are living our best lives together.
We invite all of you to join us by making the most of every moment and choose happiness every chance you can.
Please pray for us, for Kellan and quality pain-free time. Pray for his big brother Parker, this news is especially hard for an 8 year old. Parker is a special kid with a heart of gold.
We will never give up on our prayers for a miracle! We also acknowledge the miracles that have already happened and are so grateful.
God continues to surround us and embrace us – he has carried us and continues to lift us up from this darkness. My faith is stronger than ever. May God continue to bless us and our sweet boy.
Kellan’s MRI showed his spinal tumors are shrinking!! Since he was experiencing quite a bit of bone pain they did a bone biopsy too. A week later we got the news the cancer spread to his bone marrow, small amounts but nonetheless- not what we wanted to hear. Round one of chemotherapy had just started so we are waiting to see if he will respond to treatment in his bone marrow.
After chemo he spiked a fever when his counts were at zero and we spent Christmas/Christmas week in the hospital. We did Christmas via zoom after Mike/Parker brought us Santa gifts that morning… still magical in it’s own way. (A special thank you to the Landon Vargas Foundation for making this Christmas extra special , we are so grateful ) He experienced neurotoxicity from chemo which caused his nerves misfire with increased back and leg pain and wasn’t able to walk in his own. That passed and we were able to get home for the New Year. Each day is getting better and he is getting stronger!Kellan is playing soccer outside with Parker again, riding a stationary bike with iPad games, scootering at the park, attending virtual school, crushing on a very cute classmate and being Kellan!
You cannot help but think he is God’s miracle in the making- for all he has been through he keeps pushing, he keeps fighting.
Tomorrow starts Round 2 of chemo…. This round of chemo has to show it’s working or we need a plan B. Please continue to pray for him, his body accepts the treatment and most of all he continues to smile through it all!
A BIG thank you to Brian Szalabofka for planning today’s amazing surprise for Kellan, a 90
A 90+ Jeep Wrangler parade filled with Spongebob, signs, balloons and honking! All made possible with the support of Towamencin Township Police Department. Thank you!! We are so grateful for the generosity of our extended Jeep family and our local police officers. What a special surprise for our family and one heck of a send off for Kellan’s second round of chemo tomorrow.
Kellan, our mighty warrior, rings the gong to signify the end of his 30 radiation treatments! (Includes end of treatment freak out… we are good now!)
Please continue to pray for Kellan… over the next few weeks the radiation does its job of finding and killing every last tumor and cancer cell in his brain and spine while minimizing the long-term effects of full brain and spine radiation.In the car this morning, Kellan and I shared what we are grateful for during his treatment:
Today was his last day of treatment!
He only lost some of his hair.
He was able to play with Parker and take his medicine the whole time- like a big kid.
Mr Monroe for our parking spot and special elevator and the parking garage team Mr William for being so nice and giving me a toy car and Mr Gill for stopping the cars when we cross and Ms Nash for letting us in when the lot was full and introducing us to Mr Monroe.
Ms Helena for the Swedish fish and taking his temperature everyday.
Ms Christine for checking us in and the free parking scan!
Mr Chris for keeping us company in the waiting room.
Ms Megan for all the “activities” before treatment, the Port Duck and teaching me how to get my port so it’s not scary. We love you! Don’t forget Miss Devon when Ms Megan was off, Mom!
Ms Kelly for all the early appointment times.
Ms Beth for being the sweetest nicest nurse “doctor”, I love Miss Beth!
Ms Jen, Jess, Mar, Laurie, for being so nice to me – they are the best!
Ms Liz for checking in on me and giving us tips for symptoms.
Dr Hill-Keyser for being our advocate and helping plan the best treatment possible.
Ms Lisa for stopping in and keeping us comfortable.
Needless to say our entire team at UPENN and CHOP has left a lasting impression on our journey, we are forever grateful. XO
We believe in miracles… and yes, we are asking for three miracles. It’s a tall order, but we remain steadfast in our faith Kellan is in God’s gracious hands.
The outpouring of support has been absolutely incredible over the last 8 weeks. We cannot begin to express our gratitude to each and every one of you. We want to start by saying thanks…thanks for the prayers, love, messages, texts, calls, emails, meals, groceries, laundry, pick-ups/drop-offs, donations, fundraisers, cards, gifts, virtual calls and sharing Kellan’s story with others asking for continued prayers. We and most importantly Kellan can feel the massive amounts of support from around the world. He is without a doubt wrapped in love.
Wednesday marked our 1/2 way mark of Kellan’s radiation plan. Kellan is receiving high dose full brain and spine proton radiation at UPENN via CHOP, Monday through Fridays for 30 sessions. Yes, it is his full brain radiation, yes we know the long term effects and risks. You may have already read/heard Kellan has the more aggressive strand of Medulloblastoma. When this tumor metastasizes the tumor cells travel/float throughout his cranial spinal fluid and can result in spinal lesions. In order to give our little guy a fighting chance we opted for radiation for the best shot to tackle the tumor lesions up and down his spine.
Each day we pray for our next hurdle. Be it a successful treatment day, waking up ‘comfortable’, eating his calories, accessing his port… we live in the moment as best we can. That has been our saving grace, one day at a time! Kellan has been incredible through all of this (photo proof below). He is a light of love and laughter everyday for the nurse and is now mad at me on Saturdays, when we aren’t going to treatment.
We can use a little extra help tomorrow: Tomorrow Kellan will get an MRI to help plan additional treatment on his spinal tumors. We are asking for prayers for a clear MRI with good clarity to show the doctors exactly what they need to see. Since radiation causes inflammation, that can affect the MRI results. Since you are reading, I will also share our long-term miracle requests because Kellan’s case is a little complicated.
Miracle #1 – Kellan’s body responds to radiation and chemotherapy, killing all the tumors in his spine and the remaining tumor cells in his cranial spinal fluid. Yes, we need both radiation and chemo to work!
Miracle #2 – Kellan does not relapse. This subgroup of Medulloblastoma is known to come back with a vengeance, within 1-3 year after clear scans.
Miracle #3 – Kellan’s treatment over the next 10 months (6 weeks radiation, 7 months chemotherapy) does not cause major long-term damage affecting his overall quality of life. (The long list of side effects and risks breaks my heart, but so does the thought of life without him.)
Again thank you for your love, support and most importantly prayers.
In love and faith,
Kristin (Mike, Parker & Kellan)
PS. I have been documenting our mini-miracles, which seem to happen often. Stay tuned
Meet Carlyn. Carlyn is a pretty amazing photographer in Montgomery County, PA. You can see for yourself here.
A good friend of ours, Nora, had the idea to gift us family photos to capture THIS moment in time, post-diagnosis and pre-treatment. Carlyn heard our story and decided to gift her time and talents to us – one momma to another.
What Carlyn doesn’t know is for the last 20 years I have been taking photos of other people’s moments in time. Rarely am I in the photos, which makes these photos even more special to me. She captured us as we are today.
HAPPY. GRATEFUL. SILLY.
Editor’s Note: Kellan was extra silly after spending 6 hours at CHOP for a pre-treatment evaluation. Smiles and giggles were around “poop” words. Carlyn I don’t know how you did it, but kudos!
Kellan is home and so happy to be with his big brother, Parker. Thank you to our family and friends that pitched in to give both Kellan and Parker a mini room makeover – they are so excited! We also came home to a VERY clean/organized house, stocked fridge, flowers, dinners and notes from so many of you. My Mom and sisters, Kelly, Tori and Jo/Kar from a far, continue to amaze me on what they had accomplished in such a short time.
What’s next… We will be home for a couple weeks to allow Kellan to heal from brain surgery. Although they got the main tumor it did spread to the spine. The tumor subtype he has is aggressive, called Medulloblastoma. We are so grateful to have local doctors at CHOP/UPENN that treat this type of tumor and we are even more grateful there is a treatment plan.
We asked for a chance to fight and we have it.We are taking it day by day, asking for God’s grace and strength to handle what is a head. This road is not easy and we will need ALL the support, love and prayers we can muster from all corners of our world. Because Kellan’s cancer is aggressive, so too will his treatment. We will be asking everyone to pray for Kellan during his upcoming 6 weeks of radiation, asking the treatment kills the cancer as it should and spares Kellan long term damage. Miracles do happen with the power of prayer and intention. After radiation Kellan will have a month off before starting 4-6 cycles of chemotherapy. We will keep you updated. We need you! From the bottom of our hearts thank you for all those that have reached out to us, our parents, and our siblings. We are all still processing the sheer volume of people that are behind Kellan. We love you all!
Thank you to those that have made donations to the GoFundMe set up by my best friends, our Venmo and mailed checks. We don’t know what to say. We are quickly learning how helpful that money will be as we make our daily trips to the hospital, rehabilitation and interventions for recovery.
Thank you to all those that have reached out by phone, cards, texts, messenger, and via family. To those that continue to share Kellan’s story, thank you- you are continuing a ripple effect of prayers and support. Your outreach is reassuring knowing our little guy has an amazing support system.
A special thanks to Parker’s friends parents for getting him ready for school and keeping him busy while we were at the hospital. He is one lucky kiddo and I’m one grateful Momma!You hear it takes a village… that rings true with us now. You have been our village, our hope and our support. We are so grateful and will continue to pray for you and you have for us.
In love and faith, Kristin, Mike, Parker and our Warrior, Kellan
[A special smile from God: A special thanks to the Landon Vargas Foundation for the Emoji Bag and Emoji Pillow… delivered to the CHOP oncology floor just 3 days before we were admitted. My Dad happened to purchase bags a few weeks earlier to be donated… who would have thought one of those bags would have been for his grandson. For those that don’t know Landon was a student at Kellans school that lost his battle to cancer a few years ago. Landon was a guest basketball player on the varsity winning tournament team my Dad coached and brother Kyle played on. Words cannot express the sense of peace we had receiving this gift. September is Childhood Cancer Awareness month and now has a new meaning for our family.]