If you know us, you know our faith in the Little Warrior Foundation. We live for their mission - Find a cure for Ewing's Sarcoma-  and that is why we continue to raise funds for research, so if Aras's cancer comes back we don't have to hear from the doctors `` there is nothing else we can do".  We don't want to wait for this disease to become "not rare" in order for the government to give more money for research or  biotech companies to decide that it is finally worth the return of investment to try to find the cure. That moment when you read about new promising clinical trial, instead of the usual ending "more research is needed" we hope to read some day :"game changing drug eliminates all Ewing's sarcoma tumors for all trial participants with no major side effects, and long post treatment follow up shows no evidence of disease". Didn't that last sentence give you chills? 

Here is our son's cancer story in summary:

Aras was diagnosed with metastatic Ewing's Sarcoma at 9 years old in July of 2020. His main tumor was in his right arm with metastasis to both of his lungs. This disease is so vicious, that if metastasis are present, cancer gets assigned the worst stage : statge IV. 

What it took...

Lurie Children's Hospital became Aras's second home where he spent 90 days of inpatient stay for chemo and countless outpatient visits at the clinic. Our brave 9 year old son endured countless needle pokes, blood draws and painful covid tests, 5 surgeries, anesthesias, radiation, post op pain, excruciating bone pain from medications, Covid isolation, removal from all physical activities including his favorite sport soccer...If you want your child to live (and this is also not a guarantee), the only option is to give chemotherapy drugs that were invented 40 years ago. Chemotherapy is a treatment that takes your body to the state where you are barely alive, then you take a short break from it to give your body a chance to recover just to repeat the whole process again and again. Aras did this treatment for 3 weeks every month for a total of 8 months! 8 months of constant nausea, 0 energy, sleepless nights crying in pain.  Many medications he took carried side effects of secondary cancers, ruptured spleen,  seizures, heart damage, hormonal changes, kidney damage, memory loss, diabetes. 

Decisions to be made with crappy options...

Aras's tumor was taken out during the 8 hour surgery. He has an allograft implanted to replace the bone that was taken out, and secured with plates and screws. Because margins or the tumor that was taken out were still positive for cancer, we had no choice but to radiate his arm to ensure that ALL cancer cells are killed. We were told that radiation will compromise the healing of Aras arm and were given two choices: don't radiate and have better arm healing but risk for cancer to come back OR radiate hoping radiation will get all cancer cells but his arm may never heal. It really was not even a choice. When your child has cancer, your choice is ALWAYS to do everything necessary to kill cancer cells no matter the cost. You worry about other bad things that may happen to him later. Aras spent summer of 2021 driving with his dad to the hospital every day for his arm and lung radiation.

No more chemo...

Our boy finished the treatment in September of 2021. We cannot say Aras is cancer free, because the nodules in his lungs never went away. We will never know if the nodules are dead cancer shadows or cancer that is stable and is not growing at this time.

Aras's waivy hair and long eyelashes grew back and he is looking and feeling dashing as ever. Besides his long scar on his right arm, nobody would be able to tell he is a cancer survivor.  And he prefers it that way. 

The next steps...

He recently turned 12 and is gearing up for another major surgery where part of his leg bone will be taken out of his right leg and implanted into his arm to help facilitate healing with some new blood supply. 

We hope this is the last surgery for a while and it will do the trick, so our boy can move on.

We hope you help us in our mission.

Sincerely,

Aras, Aiste and Paul Kalniunas.