We'd like to introduce you to LJ, this month's Cancer Cutie. This sweet boy is fighting leukemia and has been defying the odds since he was diagnosed at 5 years old. He and his family (his younger brother who lovingly donated his bone marrow to LJ) have been on this journey for almost 3 years, and you can read his story below, written by his mother.
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| { Dad, brother, LJ, Mom } |
The story of our family life forever
changed in February 2011 when our oldest son, LJ, who was 5 at the time, was
diagnosed with Pre-B cell acute lymphoblastic leukemia (ALL). After a few weeks
of leg pain (that we just brushed off as “growing pains”), night sweats (which
we just brushed off as normal since his dad does the same thing), and a
significant change in his otherwise friendly and polite demeanor, we realized
something was really wrong.
His pediatrician ordered X-rays of his
back and legs and bloodwork to attempt to find a clear-cut answer for his pain.
His complete blood count (CBC) came back normal, but his protein level was a
tad elevated. His X-ray revealed a slight slippage of a disc in his lumbar
spine. The orthopedic surgeon concluded that he may have a spinal infection and
he needed to be seen at the hospital right away because if it were as he
suspected, it would require IV antibiotics over a period of about 3 weeks. We requested to go to St. Louis Children’s,
since LJ’s grandma works there, and after a little coordination we were on our
way.
We were to go to the emergency room
prior to admission. Grandma was waiting for LJ and me when we got there, and we
were soon taken back to a room where all the tests done earlier were repeated.
Once the results were back, the doctor came in and asked us if it was okay if
someone sat with LJ while she talked to us elsewhere (by this point, LJ’s dad
had made it to the hospital). We already knew something was wrong when she
asked us to leave his side, but our worries were solidified when she took us to
a “grief room” complete with Kleenex, a phone, and comfortable couches. The
doctor explained that on manual examination of his blood, he had abnormal
appearing white blood cells consistent with leukemia (although being a Friday
afternoon, pathology was unavailable until Monday to give a definitive result).
This moment will always be remembered as the day our lives changed forever, and
suddenly we were wishing for a “simple” spinal infection.
On Monday pathology confirmed the type
of leukemia and noted that 69% of his white blood cells were leukemic. LJ
immediately began treatment. The road was long, we knew, but LJ tolerated
everything so well sometimes it was hard to remember that he had cancer. Deep
down, even after over two years of treatment, LJ’s dad and I were concerned
that he was not “sick enough.” His blood counts were more that of a non-cancer
patient’s every month, and his chemotherapy dosages were constantly being
increased to try to lower his blood counts. I silenced my inner concerns by
telling myself that his lab work never showed any leukemic cells.
In June 2013, LJ enjoyed a week at his
favorite place, Camp Rainbow, a weeklong camp for kids with blood diseases.
After returning he kept complaining of headaches that were not being relieved
with pain medication. He was admitted to the hospital, where they performed a
diagnostic lumbar puncture to rule out relapse in his cerebrospinal fluid. The
results came back clear, and we breathed a sigh of relief. The doctors decided
to treat him for a tick-borne illness as a precaution, since he had been at
camp and two ticks were found on him (although his bloodwork was negative for any
specific tick-borne illnesses). His headaches seemed to resolve with this
treatment, and we were able to return home.
The following week we went for a routine
clinic visit and lumbar puncture. While LJ was sleeping after his procedure, a
nurse came and notified me that his doctor wanted to speak to me. She asked if
I wanted her to call my mom (who was working that day). I said yes, and
followed her to yet another “grief room.” I knew at this point, that our
instincts had been correct, and despite past examinations and diagnostic tests,
LJ was sick again. I immediately called my husband, who was 40 minutes away,
and he asked me to tell the doctors to wait until he got there. I told him
there was no way I could wait 40 minutes after they had already put me next to
another box of Kleenex. My mom came upstairs, followed shortly by the doctors,
and we were notified that LJ had relapsed in his central nervous system. Again,
this was on a Friday, so on Monday we had to return for a bone marrow biopsy
which ended up revealing the cancer was back in the bone marrow also. Our long
road suddenly seemed to split, and now we didn’t know which way to go.
We took the doctors advice, which was to
prepare for a bone marrow transplant. This, we were told, would be his best
chance of achieving a “cure.” I use the word cure lightly, because as any
family who has travelled the pediatric cancer road knows, the 80% cure rate
advertised is just a mask for the reality of what it actually is, and that is
it is merely a 5-year survival rate. After a few more weeks of more intense
chemotherapy, cranial radiation, and numerous diagnostic tests, LJ was finally
ready for transplant.
LJ was admitted to the bone marrow unit
on Friday the 13th of September, and he had a new central venous
catheter placed. He was administered even more extremely toxic chemotherapy to
significantly decrease his white blood cell count, followed by total body
radiation to completely eliminate his own bone marrow. On Tuesday the 17th
of September, LJ received his new bone marrow, lovingly donated to him by his
6-year old brother, Jonah.
We were lucky, only 25% of bone marrow
transplant patients have a sibling match. This knowledge significantly
increased our confidence in our choice to go along with transplant. It felt
like fate. As I type this, LJ is currently at day +46 post-transplant, and
doing well. We spent 20 days on the bone marrow unit, when we were expecting
5-7 weeks. In fact, had we stayed the full 7 weeks, we would still be there
now. Does it worry us that, once again, he is defying the odds and doing better
than traditionally expected? Yes, always. When LJ gets a cough, fever, etc… it
will never be just that, EVER (I don’t care if he is 30-years old when it
happens)! The difference this time is that I don’t have that gut feeling that
something is about to go incredibly wrong.
***UPDATE***
Results from October 24, 2013 show complete donor cell engraftment! Incredible! :)
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