We’re teaming up again this month with P.S. I Adore You to support another wonderful cancer family. 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.
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.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.
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.
Results from October 24, 2013 show complete donor cell engraftment! Incredible! 🙂