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Malakai was diagnosed with Synovial Sarcoma, a very rare cancer on November 10 -- just five days before his first birthday. Maribel and Robert will be spending their time and effort working with Malakai and the special doctors at UCLA to get the best treatment possible. This will keep my sister and brother-in-law away from San Diego and work, starting next week. And while they are truly moved and grateful for our prayers and emotional support, we would like to help them out financially with upcoming procedures and medical expenses. If you would like to help out, please feel free to donate in whatever way you feel comfortable towards Malakai's treatment. Many heartfelt thanks!
MALAKAI'S STORY
... at 4 months, Robert noticed that as he
tapped the bottom of Kai's left foot, he would start crying. At 6
months, there was a little bump that was quite tender to Kai; he would
guard it from others. At his 6-month check-up, his pediatrician
referred them to an orthopaedic surgeon who instructed them to monitor
it and that "...99.9% of these little bumps that form on kids are
benign." At 9 months, Malakai became more active and the bump was
considerably larger and discolored. They asked their pediatrician for
an MRI. The report was inconclusive with several differentials. They
met with the experienced Director of Orthopaedics who said an excision
of the grape-sized mass in his left foot needed to be scheduled.
Two-three weeks later, Malakai had his surgery. The surgeon came out
and was definitely concerned -- he had no idea what this complex mass
was and had it sent out to the pathologists.
Monday: A week later at Malakai's post-op appointment, the
orthopedic surgeon dropped the bomb. He said it's Synovial Sarcoma and
that the prognosis was not good. Maribel and Robert were in disbelief,
devastated; weak inside and out and torn apart. My baby sister called
me gasping for air uttering the words, "... it's cancer." I
was broken and immediately left work and fled to their side.
Having been through our father's cancer, our emotions were
getting the best of us but we knew things would move fast. There was
an overwhelming sense of urgency, a desperation for help. Synovial
Sarcoma is a rare cancer and Malakai has been the only one diagnosed
with it in San Diego. We had no idea what to do or where to go or who
to ask. We fell to our knees and each prayed like we never did before.
Tuesday: A CT and MRI of his left foot needed to be performed to
ensure there was no spread of the cancer. We were fervently doing
online research to see where our starting point could be. St. Jude's
did not have any open cases for Synovial Sarcoma. When I returned to
work and shared the news with my co-worker, she mentioned that her
son, a wonderful pediatrician recommended Dr. Noah Federman at UCLA.
He is "the guy" for pediatric sarcomas. We Googled him like
crazy and thanked God for setting us on the right path. Their
pediatrician put in a STAT referral.
Wednesday: That morning one of my dear friend's husband and
cancer survivor, Jimmy Gomez reached out. He is an angel for putting
us in touch with his contacts, Tiffany and Patrick, who shared a
wealth of information. They reached out to Bel and shared useful
advice, knowledge and available resources. They even reached out to a
retired doctor who specialized in pediatric sarcomas. He said to
Maribel, "Amputation and no radiation." We continued to
pray. God was guiding us and we were/are grateful.
Thursday: Dr. Noah Federman's office called Maribel at 4:50 p.m.
and scheduled an appointment for Monday, November 24. Maribel and
Robert were busy scheduling second opinions with Rady's, UCLA and
Stanford. But deep in our hearts, we wanted Dr. Federman.
Friday: At 9 a.m. Margie from Dr. Federman's office called and
said he wanted to see them first thing Monday morning, along with his
orthopaedic surgeon, Dr. Bernthal. They asked us to do the impossible,
gather the pathology slides and reports, all of his diagnostic imaging
on CD and all of his medical records. In a matter of hours and with
the speed of God, Maribel and Robert got it down.
Saturday: We celebrated the 1st year of Malakai, our messenger
of God. Who reminds us to be in the present and leave it all to God.
Sunday: Maribel, Robert, Malakai, and Mom attended a neighbors
prayer. There was a spiritual healer who advised Maribel, "No
chemo. Do not let them give Malakai chemo. He's too young... pray, he
will be fine." That night we hopped in the "camper van"
(as Manang Soleil calls it), and checked into the hotel to prepare for
the next morning's meeting.
Monday: We meet with Dr. Federman and after finding out his
chest CT is negative, he says "It's the best news; it hasn't
spread." He also says, "No chemo, no radiation." We all
looked at each other and exhaled. God definitely did not want us to
have any doubt about Malakai's treatment. Trust. Dr. Federman said
that the best outcome for Malakai is amputation in order to prevent
reoccurence. That afternoon, we met with Dr. Bernthal, the oncological
pediatric surgeon and knew Malakai would receive the best care.
Stanford called and also recommended amputation, no chemo, no
radiation. Then we met with Rady's that Thursday. Their oncology team
told us they never had a Synovial Sarcoma case and would present it to
the tumor board. Coincidentally, the oncologist studied under Dr. Noah
Federman and she too reiterated, "he is the Sarcoma King."
Malakai is scheduled for surgery December 9 at UCLA Santa Monica
with Dr. Bernthal. Dr. Federman will handle pain and post-care. Thank
you for your continued prayers, positive vibes and constant support.
God is good.
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