Rhys Alexander - Ewing’s Sarcoma

Chris and I got married in 2001 and had our son Rhys in 2014.  Rhys was born with a milk protein allergy but he overcame that and was fairly healthy until November of 2017.   He developed a stiff neck and was having lots of pain at night.  We took him to the pediatrician and they thought it was just a crick in his neck.  The first weekend in December 2017 he started hanging his left arm down and not using it much.  We took him back to the pediatrician on December 4, 2017 and they agreed that this was not normal.  He had some x-rays taken that day and they saw something abnormal but not sure what they were seeing.  We were referred to a neurosurgeon at Children’s Hospital the next day and Rhys had a CT scan performed.  Doctors and radiologists thought they saw a lesion on his neck and so we had an MRI done the next day.  MRI showed that Rhys had a large tumor on his neck and it went from his C1-C7.  That same day we were visited in the clinic by an oncology and hematology doctor along with a social worker.  We were informed that Rhys had some type of cancer and it was most likely leukemia or lymphoma.  Rhys was admitted to the hospital December 6, 2017 and we were there for 16 days.  During that time he had another CT, 2 MRI’s, bone marrow aspirate, biopsy of tumor, infusaport placed and was diagnosed with Ewing’s sarcoma.  

Ewing’s Sarcoma is a malignant small round blue cell tumor.  It is a rare disease in which cancer cells are found in the bone or soft tissue.  Rhys has received two rounds of chemo therapy already and is scheduled to go to hospital for 5-7 days this week for another round.  He will have to have 12 rounds of chemo over the first three months and then will be re-evaluated.  He will most likely need to do chemo for about 12 months and may possibly need surgery and radiation before the year is over.  

Chris owns a small business and has to keep working during this time.  I have a full time job but have not been able to work during this time.  Rhys barely lets me get out of his sight.  My co-workers have been very helpful in donating leave time to me and for that I am very thankful.  We are mainly needing assistance to help maintain our current household and to keep it clean and safe for Rhys during his treatments.  

I am unable to work mainly because Rhys is immune compromised and has to have close supervision of his vital signs.  He is also at risk for unplanned hospital treatments due to fever and unknown causes at any time.   Rhys used to be a normal, energetic, healthy 3 year old and now he is having to go through things that no one should ever have to endure.  We just want to be able to keep him as healthy as possible during this tough time.

We are grateful for all our friends and family and the prayers that are going out for Rhys daily.  Thank you for taking time to learn about Rhys and his long journey ahead.

Chris and Terrah Alexander