Leading up to his diagnosis, Liam was increasingly fatigued. He started to take naps in the middle of the afternoon and no longer wanted to play outside with his younger brother. I also remember family and friends commenting on his gaunt complexion.
He was diagnosed with ALL on October 1st of 2018. He has received multiple spinal taps, a myriad of chemotherapy drugs, infusions, transfusions, and surgery.
It is difficult to even put into words to struggles we face as a family because of treatment. There are the logistical day-to-day struggles balancing schedules, work and siblings, but there are also physiological struggles too when you have a child with cancer. We have become more isolated because of the concerns regarding infection risk. We have gained support from strangers that we never expected, but have also lost friends that can’t connect with us because they just don’t know what to say.
Liam is an amazing son! He is loving and caring, he loves to play and use his imagination. He loves to laugh so it doesn’t take much to get a laugh out of him, a silly face or noise, he also loves jokes! He loves cars, trains, fixing thing with his tools. He love to be outside! He is very smart and loves to talk and read books, he will be three in April and I can only imagine all of the new adventures that will bring!
Just before Liam’s second birthday, he came down with a double ear infection and was put on antibiotics. A couple weeks later, he was still having unexplained fevers and fatigue. I knew something wasn’t right and I thought the ear infection was still present. When his doctor said his ears were clear, we immediately talked about getting blood work done since he had very swollen lymph nodes on his neck, as well as abnormal bruising. About 3 hours after the blood work, we were called back to the office and our doctor shared that Liam was extremely dehydrated, very anemic, and she was 98% positive but it could be leukemia. We were sent directly to the ER to begin testing, and we’re giving the official diagnosis just two days later. Liam started treatment right away.
Liam was put into the very high risk protocol for treatment because of his bone marrow results. His treatment was very intense over five phases that were each eight weeks long. Each round consisted of weekly chemotherapy including four rounds of high-dose methotrexate which needed a 4 to 5 day hospital stay each round. He also had an allergic reaction to a certain type of chemotherapy, in place of an IV treatment for that chemo, he had to have 56 leg injections. The biggest struggle for our family was that my husband had to leave for deployment in August and just returned home. Before my husband left, we did receive the great news that Liam had reached remission! Liam is now in maintenance, which will be two and half years of monthly chemotherapy.
After Liams diagnosis, our daily life became clinic visits of chemotherapy and treatment. It was a big adjustment since Liam was involved in many activities and classes with other children, he has not be able to attend those but we have tried to find new activities that are safe for him. I did not return back to work as an elementary teacher and with having a deployed husband, it has been a lot of responsibility on my part, but I have also found a strength within myself that I didn’t know I had. In these struggles we have found ways to remain close and supportive of each other in many ways.
Since William was born he has always been daring and adventurous. We didn’t realize until he turned 1! At one, he was alway son the go trying out the bed and learning how to sky dive off of it. Same with the couch. He stays on the go and we had many heart attacks as he was a growing toddler. There is no halfway for William when t comes to adventure.
By the age of two, he knew how to express himself. He has always been so truthful. He may not say it but he wold act out the truth. He acts out what we all feel. He doesn’t hold back on his feelings. He’s very caring. If someone hurts, he wants to make them better.
He was diagnosed February 20, 2017 with Rhabdomyosarcoma and Neurofibromatosis. He has completed radiation and was on two different chemo treatments. We are hoping for a miracle and pray over our son daily. The odds just aren’t looking good and each day his prognosis worsens.
We received results last week on his last scan. His tumor has shrunk half a centimeter. That’s great but eventually his tumor is going to keep growing. The chemo is not working like they or we hoped for. He has had multiple bacterial infections which they believe could possibly be coming from his tumor so it’s a very smart type of bacteria which is only becoming more resistant to the antibiotics. There were only 2 cycles left of his chemo treatment but it would only prolong the inevitable and suffering. Me and Chris stand firm in our decision that it was best to stop treatment because we see how much William has suffered and he does not to any longer.
For the bacterial infection they will finish out this last antibiotic and he will not receive anymore. Potentially leading the bacterial infection to go to his bloodstream. The doctor is now trying to consult with other physicians on how they have made patients in Williams condition as comfortable as possible. We will also be consulting with hospice for care at home.
William will be coming home and be made comfortable. To be with his siblings family and friends. We have tried everything. We have looked in to things but there is nothing for Williams type of cancer and in the location the tumor presents it’s self. My heart is broken… in so many little pieces I’m empty.. God is still giving me strength to push through… He still shines that light of encouragement… but as a mother, as a human my heart is shattered. I have nothing left in me. Just hurt. For two days he has been playful. So we are taking every moment we can in.
I am encouraged and at peace with our son. Please know that we have trusted in God. We have put everything in His hands. Yes we have gotten mad. Yes we have asked why, with our fist up. But ultimately we surrendered everything over to God. My son has won his battle against cancer. Trust me when I say that. Please know that if you prayed for peace, comfort, a miracle, or something it is happening. A miracle will be when my son can be with our almighty Father. That everlasting life and everlasting freedom! Yes I still hurt but I stay encouraged with Gods word. I’m not selfish. I have had my son dedicated to God and I’ve surrendered William to God. I’ve never understood how someone can be so hurt and have their heart broken into a million pieces but also feel encouraged, until now. My son. My hero. My real Superman.
On August 6th, 2015 our son William was diagnosed with T-cell ALL which was an incredible shock to our family. We thought he had a virus or a bad case of the flu when we brought him into the hospital that day. The diagnosis of cancer was heartbreaking and scary, he was only 2 years old and it seemed impossible that he could have cancer. It was awful to see his physical decline. He stopped walking completely and suffered with terrible side effects from treatment along with numerous other complications. Throughout it all he enjoyed making us laugh and his spirit remained strong. Even on the days that he could barely move he would fly his planes and ask to watch his favourite shows. He taught us a lot about perseverance, positive attitude and living moment by moment.
After seven months of chemo, William still had detectable leukemia and could no longer proceed on the treatment plan for his type of disease. He needed a bone marrow transplant. Thankfully we had completed the blood work for matching and knew that his big brother Edward, who was 5 years old at the time, was a perfect match. On April 1, 2016 William had his transplant. We anxiously waited for the new cells to do their work and about 45 days post transplant we finally received the news that there was no detectable leukemia in his bone marrow. It was around this time that the kids were finally able to see each other and William was discharged from the hospital. The first few months home was a challenge as I learned to do his nursing care. Every day he got stronger and we could start going on outings to the park and other public places.
Our boys are inseparable and play together every possible moment. William is now 18 months post transplant and recently started Junior Kindergarten, a milestone we thought we would never see. There will be long term health challenges but he is happy, active and brings joy to everyone around him.
We are so thankful to have the opportunity to receive these beautiful family photos. They exhibit fun, strength and joy which exactly describes our life.
Liam was diagnosed with a disorder called neurofibromatosis. It causes tumors to grow on the end of your nerves. Liam has NF1 which occurs in 1 in 3000 people. Liam was sent for an MRI of his brain, as a precaution because of NF1. The results showed a small brain lesion. In 12 months Liam has had an additional 4 sedated MRI’s. In February of last year they found an optic glioma tumor on his left eye nerve. He became very sick one morning in October 2015, we took him to the hospital and within 24 hours he was diagnosed with JMML Leukemia, a rare leukemia associated with Neurofibromatosis.
He had 2 rounds of chemo and had a bone marrow transplant the day before Thanksgiving. Liam had lots of complications though out the process. The transplant was not as smooth as we had been advised. Liam became violently sick and had a bad reaction to the preservitive in the stem cells. He got a bacteria “c diff” infection that placed Liam on an even higher isolation for 21 days and more medications. Our worst nightmare was the graph vs hostess disease where his body was trying to reject the new cells, he is still currently on steroids to combat this.
Two weeks before Christmas, he was taken down to ICU for VOD. VOD is when the blood vessels that transport blood through the liver become inflamed and blocked. This causes the liver to swell. Because of the lack of blood supply, the liver cannot remove toxins, drugs and other waste products from the blood. He had to have a chest tube to drain his lung as that had now became full of fluid. After 4 months of isolation and lots of ups and downs, Liam got to come home. But he ended up in the ICU within 24 hours with an infection. He had pseudomonas, a bacteria infection is in his blood. We almost lost him to it!
Liam has proved all the doctors and odds against him wrong! Liam finally came home and we are 3 months in remission!!
Because of Liam’s struggles, we wanted to celebrate his 3rd birthday in a big way. The party was amazing! There was so much love and support of so many friends and family for Liam. Nearly all of the guests wore superhero shirts. Police Officer Damon Cole arrived as Batman. He is a Fort Worth police officer who travels the country visiting children with cancer and Batman is Liam’s favorite superhero. Super Girl and Robin also came. Liam was particularly taken with Supergirl. She was an incredible young woman who also was there as a volunteer for another charity. Liam loves to dance and it was so fun to see him getting his groove on with the other guests. Batman was whipping and nae-naeing right along with Liam. He even took him down one of the inflatable slides. It was an awesome time and we love having photos to remember it.
