Eleven months post-transplant and Ryan is ready to face the world again.  Ryan Calderon was born a healthy baby on June 9, 2003, but all that changed when Ryan was only four years old.  During Memorial weekend in 2008, Ryan became ill.  Ryan was taken to the emergency room at Texas Children's Hospital where he was diagnosed with Acute Lymphoblastic leukemia.

Ryan was admitted to the hospital and began chemotherapy treatments immediately.  After almost four years of chemotherapy and radiation treatments, we were told that Ryan had relapsed once again and his only chance for a cure would be to undergo a bone marrow transplant.

On the same day that we learned of Ryan's second relapse, I also received news that I had breast cancer.  This was my second cancer and it was unrelated to the Hodgkin's Lymphoma treatments I received six years ago.  Not knowing how I was going to take care of Ryan and myself or what the medical expenses would be, I decided to sell our family home and we moved into an apartment close to both Texas Children's Hospital and MD Anderson Cancer Center.  On February 28, 2012, I had a double mastectomy and one month later, Ryan received his bone marrow transplant. 

The two to four weeks immediately following Ryan's transplant were the most critical.  The high-dose chemotherapy and radiation given to Ryan prior to his transplant crippled his body's "immune" or defense system.  Extraordinary precautions were taken to minimize Ryan's exposure to viruses and bacteria and we were told that Ryan, like most transplant patients, would only spend four to eight weeks in the hospital  after his transplant then the majority of his care would be treated in the BMT clinic.

Unfortunately Ryan's transplant was not typical.  Instead of spending four to eight weeks in the hospital post transplant, Ryan spend close to eleven months.  The primary complications associated with a BMT are infections.  Infections and GVHD remain the major source of morbidity and mortality in patients who undergo a BMT and Ryan got more than his fair share including:  
  • Cytomegalovirus Viremia (CMV),
  • Ademovirus,
  • BK Virus with hemorrhagis cystitus,
  • Urinary retention that was secondary to the hemorrhagic cystitis,
  • Fungal infections,
  • Dysuria,
  • Shingles, and even
  • A fever blister on his eyeball
All of the above infections can cause serious life-threatening infections in BMT patients but the fact that Ryan had multiple infections symontaneously only added additional complications.  The first infection we had to deal with was the CMV virus.  This virus, at first, was more of a nuisance than anything else.  Although Ryan carried the virus in his blood, he had no symtomns.  However since the virus could be deadly, Ryan needed to get an IV medication every eight hours that he could only get in-patient. Ryan had to stay an extra 5 weeks in the hospital just so he could get this medicine. 

Right before Ryan was released for the first time, Ryan started to pee blood.  At this point Ryan was not peeing blood clots so the doctors released him to go home.  But after spending only four days at home, Ryan's bladder became infected and his was re-admitted to Texas Children's Hospital.  Ryan received his first catheter during this hospital stay, but it was not his last.

Over the next several weeks, Ryan developed the BK virus and the Ademovirus while he was still fighting the CMV virus.  These are three of the four most deadly viruses for bone marrow patients.  In addition, the BK counts in Ryan's blood system were so high that Ryan developed severe hemorrhagis cystitis in his bladder.  This caused massive bleeding and on three separate occasions Ryan developed a clot in his bladder about the size of a grapefruit that prevented him from being able to void.

On each of these occasions a code red was called and the Urologists had to perform emergency bedside procedures.  The clots in Ryan's bladder were so large that the Urologist had to use adult size catheters in order to break-up the clots.  Over a four month period, Ryan had over 30 catheters and was receiving daily blood transfusions to replace the blood he was losing.

When Ryan developed his fourth blood clot in his bladder, the doctors could no longer use a catheter to break-up the clot because Ryan developed a false passage and his bladder was so torn up that any kind of irrigation would have only caused more bleeding.  At this point we had to put tubes directly into Ryan's kidneys to drain his urine and avoid the bladder altogether.

Since Ryan was still fighting the CMV, Ademovirus, and the BK virus with severe hemorrhagic cystitis, it was very difficult for his body to fight all of these complications at once.  In order to help Ryan and his immune system, we decided to participate in a special study where T cells were grown in a special way to attack the CMV and Ademovirus.  Our hope was that these special T cells would attack these viruses and help eliminate some of the energy Ryan's body was using so he could fight the BK virus.

After spending almost nine months in the hospital, Ryan was finally released to go home, but being home was not what we were expecting.  Because of Ryan's hemorrhaging we still had to go into the hospital daily for blood transfusions, blood work, and various other drugs he needed via IV and he still had multiple tubes coming out of his body.  In addition to that, Ryan's immune system was still very weak so he was prohibited from going anywhere that was public.

Over this past year it became very difficult for me to talk or share any of our experiences with anyone.  Ryan and I were living in a constant state of shock.  The hardest part for me was trying to not show my fear to Ryan and keeping his spirits up knowing that the viruses he was fighting were deadly and Ryan was extremely lucky that the cancer had not come back.

We were in and out of the hospital through the rest of the year for various infections but in early December the bleeding finally stopped and we were able to remove the catheters from his kidneys.  It was our first sign that things might be getting better.

In late December, the doctors performed another bone marrow aspiration and spinal tap and they both came back cancer free and his transplant was still 100% donor cells.  It was hard to believe, but it was even harder to convience Ryan that he was going to be okay.

We have been out of the hospital since the first of the year and Ryan has finally started to produce his own blood cells and medically he is doing much better.  However, emotionally we are both struggling.   Our social network has become the doctors, nurses, and staff at the various hospitals and other patient families.  Ryan is finally able to get out and do things around town, but everywhere we go we run into someone that knows us from the hospital.  For Ryan, this is very difficult because he just wants to forget and not be the kid with cancer anymore.

Because of this, I decided that it was finally time that we return to Washington were I was raised.  Luckily, Seattle has one of the top Children's Hospitals and Bone Marrow Clinics in the US and Ryan's doctors were comfortable with transferring his care to this team of doctors.  Ryan's dad agreed that it was best that we go to Seattle so we had our child-custody agreement updated by an attorney, packed our home up and hired a mover.  Unfortunately, his dad refused to sign the agreement after months of negations and we were unable to move.  Ryan and I were forced to spend the next five weeks in a hotel while I obtained alternative housing (our apartment was already leased to someone else so we couldn't stay there).