Kimber loves everything rainbow and unicorn! She is a spunky girl who loves to play video games and she likes to play outside. Cancer has not slowed her down a bit. She used to do gymnastics and aspires to do gymnastics again. She became a big sister three days before her diagnosis. She is the most loving big sister.
On March 2nd 2017, Kimber woke up in the middle of the night crying and complaining of leg pain. Like any other parent we attributed the night leg pain to “growing pains.” In the morning she was her cheerful self but limping still complaining of her leg. On March 3rd, she still wouldn’t put down her leg so we decided to take her to the doctor. She ended up getting x rays and blood work. The X-rays revealed a dark spot on her right tibia. That following Monday ,March 6th 2017 Kimber got an MRI that showed an unusual growth inside of the bone and the surrounding tissue. We traveled to D.C. where Kimber got an ultrasound guided bone and soft tissue biopsy. We had to travel to D.C. because Kimber needed to see a special pediatric orthopedic oncologist.
Friday March 24th we welcomed our second child into the world, Vada. Three days later and a few short hours after bringing baby Vada home we received the news that Kimber’s bone biopsy results were not great and that she had cancer. Kimber has been diagnosed with Ewing’s sarcoma.
Kimber got her central line surgically placed on March 30th and receivedher first chemotherapy on April 3rd 2017. Kimber had lim salvage surgery in Dc that summer. By December, Kimber had undergone 4 more rounds of chemotherapy, eight rounds total. Her treatment is almost complete, she has 4 more rounds left.
Kimber has been being treated at our local chrildrens hospital as well as at chrildrens National in D.C. The traveling is hard on our family but Kimber needed to see a special surgeon. Kimber has handlerd her treatments considerably well. She’s had minimal setbacks and she gets around despite only having one leg available to her.
In my opinion, having a 4 year old and hearing the words “ your child has cancer “ was life changing enough. But the hardest part for me was having a new baby and a child with cancer. I hate our family being separated often. I don’t have control over how I want to raise them, it’s a tough situation all around. However we strive to give our kids a happy life regardless of the struggles.
Ryon is a very energetic, strong willed 2 year old. She loves anything to do with Minnie Mouse, ponies, and of course “ponycorns” (unicorns).
On May 3, 2017 Ryon went into surgery to repair a hernia, when the surgeon came out he broke the news to us that she didn’t have a hernia but instead it was a tumor. He removed the tumor during surgery and two days later Ryon was admitted again to undergo a PET/CT Scan. On May 9th we finally had an appointment to see an oncologist. We had great hopes for this appointment. We hoped to hear that they had removed all the cancer and she was good to go.
Unfortunately that wasn’t what we heard. We were told that they weren’t exactly sure what type of cancer she had (they gave us two possibilities) but both would require a very hard chemo regimen. She was sent 2 days later to have surgery to get a port. Then on May 15, 2017 she received her first round of chemo. Just after her getting home from her first round of chemo we got the news that Ryon had Soft Tissue Ewing’s Sarcoma.
Ryon handles chemo like a champion. Most of the time you wouldn’t know that she had cancer if it wasn’t for her sweet little bald head. She’s always running up and down the hospital hallways begging a nurse to walk or play with her. She’s always getting into as much trouble as a normal two year old would.
On August 24th Ryon had a second surgery to clear the margins of her tumor. After about 2 hours in surgery, her surgeon came out and gave us the news that all the cancer was removed. She is now NED and only has two more rounds of chemo left to go. We will still have a long hard road ahead of us learning to deal with life after cancer but our baby girl has kicked cancers booty!
Dominic old soul, easy to talk to- VERY personable. He radiates love and kindness. He loves to sing, laugh at the show Impractical Jokers and watch Comedy Central. Dom is a gamer and a real tech lover- all teens are though! He is 18 and has fought bravely for years, going through more in these few years than anyone should ever have too in one lifetime. Though he is ill, he ALWAYS makes it a point to take care of others- like his brother or friends.
In the fall of 2011, he was experiencing pain, weight loss and no appetite. He was diagnosed with Ewings Sarcoma. Dom had both chemo and radiation, case studies, 2 limb salvages, biopsies etc.. We are struggling to find ourselves now that his diagnosis has turned into a very serious and very rapid moving illness. Dominic has been terminal for years- suffering more than five relapses. Recently, it went to his spine and in more than ten areas. Chemo is either making him sick or is not working. Radiation stopped helping now too. We are trying to cope with the fact that hospice is now having to be introduced though we have put it off for as long as possible. Between stress, heartache and financial issues- the list of struggles are quite lengthy.
I have had to stop working due to increasing stress, anxiety and began having panic attacks. Over the years my husband has lost jobs or changed schedules due to everything. My husband and I have recently separated due to increased stress factors surrounding attempting to plan for prom, graduation and funeral all for the same child. We lost a daughter in 2012 and now they say we are tentatively weeks out from losing my boy. They said he will be lucky to see graduation, which has been his goal since diagnosis.
Dom inspires others to see the beauty in each day and takes no one or nothing for granted. He truly is the epitome of strength and anyone that knows him can go on and on about how no matter what type of day he has, he is always looking to make someone else smile.
Carlie is strong and always smiling. She loves to sing and has a beautiful voice. Carlie started her freshman year just like any other teen. Weeks later, during volleyball, she started to have some right shoulder pain. On September 27th 2015 she went to the Milford emergency room. After a CT scan was performed, we discovered she had a tumor in her clavicle bone. That night we went into Boston Children’s Hospital. On October 8th she was told that she had Ewings sarcoma. A very rare and aggressive bone cancer usually found in children and young adults. There are only about 200 cases per year in the United States. About 1.5% of those cases will have a tumor in the clavicle bone. Carlie started chemo on October 12. Carlie receives chemo every other week at Dana-Farber Boston children’s Jimmy Fund Clinic.
Cancer changes everything! I have been out of work for a year to care for Carlie. My husband took 6 months off too. Carlie has three little sisters who are also affected by her diagnosis. She has been homeschooled all year. Through it all Carlie is positive and never complains, even on her bad days.
Zack was diagnosed for the first time with Ewing Sacroma in September 2014. Ewing Sacroma is cancer that occurs in the bones most commonly in children between the ages of 6-18. Symptoms can include bone pain and swelling. Treatment for Ewing Sacroma can include chemotherapy, radiation and even amputation. Zack went through chemotherapy and radiation. He was NED (no evidence of disease) as of June 2015. He retuned to school and life!
In December 2015 he started to have rib pain. ER visits and scans showed nothing. He continued to have pain in his ribs and new pain while sitting yet his scans showed nothing. In April 2016, the scans revealed tumors on rib number 7 and 10, both sides of his pelvis, and his left knee. We were thrust back into active treatment. Zack had another port placement surgery so chemo could start again. He received chemo every 21 days for 5 days inpatient. He had 6 more weeks of radiation and will continue chemo until the spring of 2017. He has had two follow up scans since April and they are showing shrinking of the tumors.
Cancer changes your entire life…it now controls everything. I recently lost my job due to running out of FMLA and unable to commit to days/hours due to the unknown. Things can change so fast. Everything can be totally fine and an hour later Zack could have a temperature and we will need to head right to the ER. Zack is attending school online due to the fact of him being unable to go to school. If his counts are low he is suseptible to all germs. A sniffle can turn into pneumonia, which means being admitted to hospital for IV antibiotics. He is doing very well in the online school but misses his friends and the socialization. We feel very fortunate to have been able to get photos taken because he hasn’t been able to have yearly school photos taken. No matter what Zack is going through he is always smiling! He has such a positive outlook and good attitude!
Kayla was diagnosed November 6, 2014 with Ewing’s sarcoma. The primary symptom Kayla had was severe stiffness and pain in her neck which eventually led to losing movement in her left arm. Kayla just finished chemotherapy and had to also undergo radiation. She also had surgery to remove part of the tumor before starting chemotherapy. This has put a huge financial struggle on our family with the constant trips to the hospital. But made it has also made us all appreciate a healthy life and each other more than ever.
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