My son Kyle is the sweetest, most kind 10 year old. Dogs and babies make him laugh. His dad makes him laugh. His most favorite thing ever is baseball and the love of the San Francisco Giants and Buster Posey. Kyle was just in the stage of knowing what it is to find a little piece of yourself when he was diagnosed with Wilms Tumor.
In August of this year, he came home from school after running a mile earlier in the day telling me that his urine was a “pinkish” color. He wanted me to see so I went in and looked and it was obvious that his urine had blood in it. I asked him if he had been felling well and he said he felt fine, although he did have a little bump on his tummy. The bump turned out to be a 2 1/2 pound tumor on his left kidney, diagnosed with stage 3 Wilms Tumor.
This diagnosis has been devastating to our family. Not only was my 10 year old son diagnosed with cancer out of the blue, his 7 year old brother was crushed as he looks up to his brother like a child looks up to a super hero. He was afraid when we left him with his Aunts and Grandparents while we lived at the hospital for over 2 weeks. It changed him and took away his innocence. And then the cancer survivor himself. He now has to get MRI scans, CT scans and X-rays every 3 months for a year and a half. Slowly that will change to every 6 months for a few years and then every year for several years.
For the rest of his life he will have to be tested for secondary cancer due to his treatment. His life will never be normal, carefree, worry free, or free of the memories of what chemotherapy put him through…put all of us through. We are not the same. We are a family who has always been very close but now look at life with more meaning and with more caution.
As a mother who lost her first child, a daughter, at almost 6 months of pregnancy, a diagnosis that could take my second born child is more than I can bare. Every little moan from him, I worry. My heart skips a beat if he looks a little tired. I can’t lose any more children. And then there is my husband…our rock, our strength. If he even thought about breaking down, he may never stop. He told my son in the beginning when he was afraid because I was crying that until he sees him cry, there is nothing to worry about. Mommies are just emotional he said…until you see me cry, everything is ok. And from that moment on, he has never cracked in front of my son. He is our hero, father of the year, more than I could ever have imagined as a father to my children.
Three short months after Kyle’s diagnosis, his buddy Mason, another 5th grader in at his school (400 kids total K-8th) was diagnosed with a brain tumor. Kyle was devastated. The entire 5th grade class was devastated. This year has changed these 2 young boys and their friends forever. They will not remember a lot of things in elementary school but they will remember that two of their classmates were diagnosed with cancer.
It has been a very tough year. We have become close to Mason’s family who we only knew of before because our children were in the same grade. But now we know and share a bond that will always be a part of us, our boys, our families, our lives. These boys have two different diagnosis’ but two very similar stories with identical families. We both have 10 year old boys, 7 year old siblings who have felt very lost with their siblings diagnosis, and 2 parents who love their children with all that we have.
Kyle was at the stage in life where sports were the most important thing there could be in a boys life. No girls, no drama, just a boy and his sports. He played every sport he could think to play. Soccer, basketball, football, and then baseball. He has always said he would grow up to play for the Giants. And when the doctor told him no contact sports, his heart sank. It changed him as a boy with a love of sports. He still laughs, he worries a ton, but he still wants to play baseball. He physically feels like he isnt ready for those things quite yet, but he knows the day will come when he will be right back where he was.
Wren is extremely silly and energetic. She loves to make people laugh and if she knows you well, she will perform for you (dancing, singing, storytelling, etc). Not everyone can see this side of her but we can attest to her wild imagination. My favorite aspect of Wren’s personality is that she already has the ability to show empathy for others. She will say “Awww… she’s sad” and give hugs to someone who needs it. It makes our hearts soar to see her take care of others. She’s also sassy and hilarious and mischievous as a normal 3 year old would be. She’s the perfect blend of tomboy and girly girl. She did not care when her hair fell out although it broke my heart. Now that her hair is growing back it really fits her. She loves animals, everything her daddy likes and she is a loving big sister to her baby brother Axel.
In the summer of 2016, Wren was mildly sick, but we did not think too much of it. We took her in to her doctor because we could feel the tumor protruding out of her abdomen. We thought it was just constipation or something. We had no idea it was a 2 pound cancerous wilms tumor at that point. Up until then, she was healthy and just a normal, happy little 2 year old girl. Then within days we were hearing she had cancer and would need the tumor, a kidney and some adrenal glands removed.
Wren had surgery to remove the tumor, a kidney and some adrenal glands and they installed a port for chemo. We all spent 5 days in the hospital recovering from that. Then from July of 2016 until December of 2016, Wren would have weekly chemo that made her very sick at times. She endured the surgery and the following months of chemo like a champ.
On December 25, a very special Christmas morning, Wren celebrated her 3rd birthday cancer free! It was a struggle on many levels for all of us including financially, emotionally and physically since I was pregnant throughout this time as well. We did it together and our community helped us in so many ways.
Childhood cancer has changed us all forever. We will never be the same, and that includes my immediate family as well as so many people in our network that have been impacted by Wren’s story. I always say that I learned that life is short, yes, but I also learned that life is long. Because we do not know how much time we have, we must take good care of ourselves and others. We are in this together! We try really hard not to live in fear, at this point we go back for scans every 3 months to make sure the cancer has not returned. It is hard to manage the anxiety at times because we know exactly how quickly life can come to a screeching halt with just one word.
Ashlyn had always been a chunky baby and never been a good sleeper. So her insomnia and belly never crossed my mind as a sign of cancer. When she would scream in the middle of the night or run a low grade fever, teething was always to blame. Doctor appointments didn’t catch her kidney tumor and neather did I.
When Ashlyn was 3, her daddy went to give her a hug and she told him her belly hurt. We pulled up her shirt and noticed her belly was bigger on the left side and she had turned pale white. After taking her to the clinic we were advised to take her to the ER. They were thinking it was her bowls or appendix. It was our ER doctor that told us she had Wilms Tumor. We were sent to OKC that night to meet with doctors the next day.
Her first round of chemo started immediately. The tumor had consumed Ashlyn’s left kidney. It was the size of a large grapefruit. It had moved to her liver and lungs and there were spots on her right kidney. Her kidney was removed. We went through almost a year of chemo and radiation. Ashlyn had been in the hospital at least once a month for that whole year.
Three months after being cleared we found out her cancer wasn’t gone. She had relapsed. It is in her lungs. So we are now doing chemo again.
One of our obstacles has been learning to find a new normal in the mist of the cancer world with 10 children. Hospital stays, chemo, blood transfusions, tests, bloodwork, and medications are now apart of our lives.
We are learning to trust in The Lord even more and realize that He has a purpose for all of this. We are saying I love you everyday and not taking for granted the time we have together.
Cancer doesn’t just affect Ashlyn or us as her parents. She has 9 siblings that live in the world of cancer with her. We try to stay together, during her treatment, as much as we can. There are times this isn’t possible though because of work. Our children range from 18-2 so sometimes they don’t come with us to appointments or chemo, or we only bring some. This had definitely been a learning and growing experience for us all.
Mitchell is a funny and very smart kid. He catches on to things very quickly and loves to play with “his girls” (his sisters). He likes anything that is the color green, loves construction trucks and trains, and enjoys play doh. He also has quite a fascination with police cars and fire trucks. His smile is amazing!
In the fall of last year, Mitchell was experiencing a decreased appetite and naseua. Mitchell was diagnosed on September 28th with Wilms Tumor, a type of kidney cancer. At the time of diagnosis, you could almost feel and see the large tumor in his abdomen. Some other common symptoms include the following: blood in urine, constipation, and fever. Wilms Tumor is the most common type of kidney cancer in children. Treatment plans usually consist of chemotherapy and surgery to remove the tumor. Mitchel’s treatment so far has included chemo, a nephrectomy, radiation and surgery to have a port placed.
Mitchell’s diagnosis was really hard for us because I was so involved with my older children’s activities and I’ve stepped back from that quite a bit. it has definitely changed our focus and my husband has taken on a more active role in our day to day especially when Mitchell has to be in the hospital. I feel guilty about not getting as much time with my other children.
Mitchell has been so brave and he amazes me all the time. I’m proud to be his mother. His sisters have been really helpful as well and they help him feel better.
Kalan loves life and he has a great imagination. He loves playing with legos and anything pokemon related. He loves playing outside with friends and riding his bike.
When he was six years old, he started to have a lot of pain on his left side and couldn’t really keep food down. After some doctor visits, he was diagnosed with Wilms Tumor. It turned out the tumor was so big it was pressing on his stomach, making it hard to eat. Wilms Tumor arises in the kidney and no cause is known. Wilms Tumor is the most common kidney cancer in children and most children are diagnosed with Wilms Tumor between 2-3 years old.
Kalan had chemo, radiation, and surgery to remove his kidney. He has follow up appointments every 3-6 months. It’s sometimes hard to make his appointments because the hospital is about 8 hours away from where we live. The distance makes it tough to afford to get down there.
Kalan’s cancer diagnosis made us look at things differently. We spend a lot more family time together. Kalan wants to do whatever he can to help other kids who are going through similar situations. He says that no kid should have to go through this and that life is not fair.
Hope session by Northern Clove Photography. website | facebook
Kaavya is a curious toddler, misses going to school and seeing her friends, loves watching peppa pig and caillou, loves going out, loves the beach and vacation (packing bags part, getting on a plane or staying at a hotel- she finds it fun), loves princesses, and is into pretend play. Kaavya has a beautiful spirit! At her little age, life is black or white. She has painful moments but as soon as she is better, she is back to her normal playful and fun self. She doesn’t question her pain. I am thankful for that. I want to be like her!
Kaavya was assymptomatic. We felt a mass in her abdomen at home and took her to the doctor. She didn’t get sick all year so we hadn’t seen her doc in almost a year! In October of last year she was diagnosed with Wilms Tumor. Her treatment plan included a major surgery to remove the tumor and a kidney, and she is now undergoing chemotherapy.
It is amazing to see the will to bounce back in children. Her empathy for others going through procedures in the hospital melts my heart and makes me proud. She cooperates with the hospital staff but cries and feels bad for any adult or child in pain….even if she is watching tv… and says “I don’t want them to get a poke/ I don’t want them to be sad”. Her ability to empathize!
Her diagnosis changed our lives in a moment. Childhood cancer, we hear about it and read about it but never imagine it happening to anyone you know; least of all to you. It was surreal! Accepting it as our new reality was the hardest. Kaavya is our lil warrior, I drew strength from her in my weak moments! She is an amazing little girl and I am blessed to be her mom. Her diagnosis made us stronger as a family. We also felt greatful and blessed for having a loving and supportive family and friends. Thoughtful gestures from complete strangers reaffirmed our faith in humanity.
