Evan's Story
Birthday: March 30, 2005
Location: The Woodlands, Texas, USA
Diagnosis Date: 2007
Type of Sarcoma: Rhabdomyosarcoma
Tumor Site: Bladder
Age at time of Diagnosis: 2 years
Hospital:
Texas Children's Hospital
Oncologist:
Dr. Murali Chintagumpala
Diagnosis Experience:
Two months after Evan's second birthday, (end of May 2007) I noticed he was grabbing at his
penis more often. He then started saying that his 'pee pee' hurt and it was clear that he was
having what looked to be bladder spasms. We had just started potty training and I noticed
that he was straining to urinate. I thought he could have a bladder infection so we went to
the doctor. After an inconclusive urinalysis and doing a urine culture we were sent home and
told that it was most likely due to constipation. Two days later we ended up in the ER
because his bladder spasms were unbearable - and within hours we were having an ultrasound
and I saw a mass in his bladder. They put a foley in to relieve the bladder retention and
help with the pain. Our son was screaming non-stop and no medicine would help alleviate the
pain. It was unbearable and I felt like I was losing my mind. The ER doctor rattled off the
diagnosis, stunned I asked him to spell it. I wrote it down and just stared at it - not
believing what I was seeing. 'Sarcoma' - I knew it was Cancer. We were immediately transferred
to the Oncology floor at Cook Children's Medical Center in Fort Worth, TX and greeted by
the nurses.
Treatment:
Evan had a cystoscopy the next day and during that same procedure they inserted a port-a-cath
in his chest and performed a bilateral bone biopsy (to see if the cancer had spread to his marrow).
The cystoscopy revealed the rhabdomyosarcoma was embryonal botryoidal in nature. Luckily his
marrow was negative. We decided to sign Evan up for the Children's Oncology Group clinical study.
It was a tough decision but after some research, we felt confident it was his best chance to beat
this. He was randomized for the study with VAC and irinotecan. We then made the decision to move
to Houston to be treated at TCH because we have more family support in Houston. We began our
chemotherapy treatment (Vincristine, Cytoxin, Dactinomyocin and Irinotecan infusions) at Texas
Children's the first week in June 2007 and are now in our 40th week. We successfully completed
6 weeks of radiation at Methodist Hospital in the 4th week of chemo. That time was just hell -
Evan was very sick and we ended up hospitalized for two weeks for pain management and infection
of his bladder due to the foley that remained in his bladder (it was in for a total of 10 weeks).
Recovery:
As we approach the end of therapy we have made some progress - Evan's tumor is 1/2 the original
size and there is NO evidence of the disease spreading. We are so pleased with that. Evan has
tolerated treatment very well; we have had the typical neutropenia and lethargy to contend with.
But once we completed radiation, and the swelling in the bladder subsided, Evan's bladder spasms
and pain level decreased dramatically. At the height of it we were on a morphine pump, then oral
morphine - now he's been without any pain! It's been frustrating at times - although TCH is an
amazing hospital I felt frustrated when we were hospitalized and I couldn't get an answer as to
why he was in so much pain. Urology didn't have an answer and the Hemo-Onc doctors referred me
to Urology. I really had to be my son's advocate and research pediatric pain management for
bladder pain (unbelievably hard to control) and was able to get them to start a powerful
anti-inflammatory drug, which made all the difference. Also, while Evan had his foley, I was
amazed at how the staff looked to me for answers, help with procedures, etc. It was clear that
they did not see that in pediatrics very often. All in all though, our experience at TCH has
been very positive. Evan is experiencing some peripheral neuropathy now - he is dragging his
right leg and having trouble walking and with balance. This is as a result of large doses of
vincristine and we hope will go away as his body rids itself of this drug. We will be ending
treatment in a couple of weeks (hard to believe) and will have our final scans April 21-24th.
As it stands now they don't think we will need to remove the remainder of the tumor as it is
too risky to do a resection of the bladder and risk damage to the bladder neck (which results
in complete loss of the bladder). We are SO thankful to not have surgery and cross our fingers
that after these next scans, that this will remain our course of treatment.
Life Now:
Our life now...well we are happy and doing well. Evan is an active (even with his pirate leg!),
loving and compassionate 3 year old. He has adjusted to going to the cancer center for infusion
and to hospital stays for his inpatient chemo. He takes charge when he can, in a situation he is
largely out of control in. He realizes that he can help with his vital signs, examinations and
even his blood draws. He has been on social isolation, which has been hard but when his counts
are good we make a point to play with his cousins and other non-sick children. He's a trooper
and gives me strength on a daily basis.
You can keep up with Evan's progress by clicking on this link to his blog
www.evansrace.blogspot.com
Thoughts:
I wish I had something profound to say here. I can say that you should never give up - never
give up researching, learning, asking questions and strategizing. Never give up hope. Be the
most tenacious patient advocate, whether it's for yourself or your child. It's one way to
feel in control in the chaos. Medical professionals have many answers but remember you are
a full participant in your (or your child's) healing. Remember to lean on your family, friends
and community. It's hard to ask for help, but you need it now and it will help to ease the
burdens you have yet to face. Cancer came into our life unexpectedly - a rude intruder that
threatened everything we knew to be safe. But we educated ourselves, realized that there are
many many people in worse situations and found a way to be thankful. Thankful for the journey,
the amazing people we've been blessed to meet and thankful to God for giving us the strength
to continue each day.
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