When Addison was three, she had a cold that wasn’t going away. We took her to the doctor several times where she was given nebulizers and cold meds. Eventually her oxygen fell and we were sent to the ER. We received the diagnosis a few days later that she had stage IV Rhabdomyocarcoma and that the disease had spread through about 75% of her lungs.
We are about to start Addison’s 4th consecutive year of treatments. She handles it relatively well. Unfortunately- this is her “normal.” She never went to preschool or has been able to participate in many activities- so the hospital has become her “school-” and the nurses and doctors and child life specialists are her teachers.
I have been unable to work. Her treatment and side effect schedule is a full time job. My husband has also had to miss a lot of work. We are unable to make plans in advance. We live day to day. The emotional strain and stress in also never ending. Cancer is always in the back of our minds- even on good days.
I feel sad for my son. He was only 4 when Addi was diagnosed. He will be 8 this year. We do our very best to give him the attention that he deserves – but he is always 2nd. I know it is hard on him.
We found out a few days before the pics were taken that Addison’s cancer had returned for the 3rd time. We are all devastated – so these pics were taken before treatment resumed, while Addi was feeling great and wasn’t having a ton of horrendous side effects. So thankful for these moments captured!
Caleb is goofy and loves to make people laugh! Loves playing outside, Batman, anything Disney, cars, and trains.
Caleb was at his four year well child check and we found a lump on his abdomen. It felt like a golf ball under his skin. We figured he was constipated and started him on miralax and did an X-ray. The X-ray showed what looks like a big ball of poop. Two days later he had a 104 fever and was throwing up uncontrollably so we rushed him to children’s. At children’s they did another X-ray and said it’s just poop. They were going to send him home but I said I wanted more tests done. I had that feeling in the pit of my stomach. An ultrasound showed blood going to the “poop ball” so we did a extensive ultrasound and ct and finally learned it was a tumor the size of a grapefruit. He had Rybdomayosarcoma.
Caleb’s has been getting chemo weekly since October and will continue until mid August. He also has had 33 days of proton radiation to his pelvis and will have ten days of X-ray radiation to his right lung. Caleb doesn’t get sick very often. Thankfully, he still has lots energy. He does have issues walking because of the chemo.
Honestly our life has been a crazy roller coaster of emotions since that week we found his tumor but life has continued on. Not much has changed besides spending more time having fun and less time worrying about the small things. We’ve tried our best not to let this change our daily lives. I honestly feel like our family is closer because of all of this. Our faith in God is what is keeping us moving.
Savannah is a very happy and “go with the flow” baby. She loves toys that light up and play music. She is just starting to sit up by herself and is starting to crawl. Savannah also LOVES her sister. You can see it in her eyes when she hears Scarlett’s voice, it’s just amazing to watch. Savannah is also teething and loves to put everything in her mouth.
When Savannah was born, the nurses felt a lump on the back of her neck. Just two days after being born we were already on the journey of scans and doctors. She had a biopsy/removal of the mass in Aug 2017. She was diagnosed with Rhabdomyosarcoma on 8/23/2017. She started chemo 8/30/2017 and had her mediport implanted. Savannah did not have any symptoms. My pregnancy was normal. Prenatal Ultrasounds did not pick up any abnormalities.
Savannah has been going two times a week to the hospital for blood work and chemo. Every 3 weeks she stays overnight to get hydration because one of the medications can damage her bladder and kidneys. She was just in the hospital with fever. Savannah just had a round of scans and they came back clear! She has to still go on with chemo. She is starting phase two of her treatment and it will intensify. We are very nervous about the effect it will have on her body, especially since she is such a strong baby now.
Savannah’s cancer has changed our whole world. Of course our children always come first, but our priorities have changed. The cancer is our top priority. Savannah has a 3 1/2 year old sister, Scarlett. This has changed her world too. She has questions about her port, and hospitals and shots, things that 3yr olds should not have to think about. Scarlett is attending a nursery school and this is a great thing for her. We try our best to make Scarlett feel special and loved and include her in everything the best we can. It’s tough to have to put her at family’s houses overnight for when Savannah has to stay overnight at the hospital.
Savannah’s father is working more than ever to provide for us. And he is not home as much as he would like to be. This hurts him since his family is his everything. We are struggling financially. We are getting by but it is stressful. I, Mom, had to take an unpaid leave from work to take care of Savannah full time. I have always worked. So this is new to me. I absolutely love being a mother. But not having my own money to contribute is hard to get used to. We are all doing our best to be strong for our children.
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.
Pretty much everything can make James laugh. He loves sports, animals (dogs especially), and other kids. He loves parties, play dates, and climbing trees. Prior to this diagnosis, he played baseball, football, soccer, basketball, and climbed the tree in front of our house every day after school. By the time we entered Memorial Sloan Kettering Cancer Center on August 4, he had lost the ability to walk. Thankfully he is responding to chemo and walks on his own again and just began to run two weeks ago.
He was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma on July 31, 2017. We first noticed a lump in his groin. I thought he had a hernia. By the time we saw that lump, it had metastasized. Original site was in his calf which we never saw. He has had port implanted, double bone marrow biopsy of both hips (its 80% in his bone marrow), piece of testicular tissue removed and frozen because chemo may make him sterile. However, this was done the day before we learned his prognosis- 3 years average life expectancy. 5-6 years maximum. He is 6 years old. He is currently on 43 weeks of VAC/VI chemo & radiation protocol.
His cancer is rare and aggressive. There have been no improvements for Stage 4 Alveolar Rhabdomyosarcoma. He is expected to relapse 15-16 months from diagnosis. Upon relapse the prognosis is dismal since they have no other options and the cancer stops responding to chemo.
Tyler is the sweetest little 3 year old ever! Tyler’s diagnosis started with mosquito bites as most faded one got harder and bigger. As it grew we knew something was wrong. That’s where he tumor originated from. I believe the bite somehow led to his diagnosis.
He handled his treatments rather well but at first he wouldn’t eat or drink, needed a feeding tube and lost a lot of weight. He was very sick until he started cbd/thc treatments. From then on he handled chemo like a pro.
There are many obstacles we face right now. We have three other kids besides Tyler, one lives with us full time and the other two stay on weekends. We went days, weeks even, without seeing our other kids. That was hard for them too. Then having to keep our school aged kids apart from Tyler most the time because someone was always sick during the winter. The hardest part of having your child go through this is the fact that there is absolutly nothing you can do to make it better. The questions and concerns we got from Tyler was heartbreaking. They dont understand why this is happening to them and you dont either so what can you possibly say.
