In December, Mom and Dad noticed swelling in her right arm. It grew quickly and a quick trip to the local emergency room and a transfer to Yale New Haven changed everyone's life forever.
Alexa was X-rayed, scanned and biopsied. A central line was placed. A diagnosis of rhabdoid cancer was made. We were also told she had tumors in her lungs. Shock is not enough to describe the way we were all feeling. The team at Yale was making a plan but we didn't know what to think. If you google rhabdoid cancer the word that jumps out at you is lethal. How could this be happening to our precious baby?
She began chemo following the recommended protocol. She was hospitalized for over 3 weeks and got through the initial chemo. She lost all her little baby hair, eyelashes and eyebrows. She needed frequent blood transfusions and platelets. Her arm swelling went down and a follow up scan showed her lung tumors were barely detectable. We dared to hope.
The next 6 months involved more chemo, hospitalizations and the ever present transfusions. It was decided she would go to Boston Children's Hospital for surgery. They were going to try to remove the tumor. Chemo was stopped to prepare for that.
The Doctor at Boston scheduled the surgery and Alexa went to Boston for pre op work up. Repeat scans were done and we were given the news that her tumors had returned. Boston did not give us much hope.
Alexa had a couple of wonderful weeks.
She was feeling good and had no chemo on board so she had none of the bad effects of that. We had such a good time with her and she was always smiling and laughing. She also started singing with all the music she loved so much. We actually were thinking that they made a mistake and she couldn't possibly be that sick.
A new chemo regimen was started at Yale and she did not do well. She had terrible side effects and it was obvious that her breathing wasn't good. She then spiked a fever and couldn't breathe. She was rushed to Yale and put in PICU. She was put on pressurized oxygen since they couldn't intubate her. She had a big tumor taking over her airway. She had to stay on her tummy or the tumor would press on her airway. The Doctors discussed Hospice care. We brought up giving her the original chemo and maybe radiation. They agreed. The chemo started to work right away. They started radiation to her chest also. She was out of PICU and off oxygen pretty quickly. She went home and continued the radiation as an outpatient for 2 more weeks. She had her usual chemo grouchies but was doing well.
Fast forward to her birthday 9/7/12. We were so happy and so was our baby. She truly enjoyed her birthday.
They wanted to start another chemo. And so it began again. She did not respond and started to need oxygen again. A referral was made to St Judes for a clinical trial. Again she couldn't have chemo before the trial and she deteriorated. She was flown to St Judes by air ambulance. It took almost a week for them to start treatment and she was getting worse. She received her treatment and they said she wasn't responding and they were sending her home. I'm sure we would have had a better opinion of St Judes if the chemo had worked but they were quick to send her home. She was sent back to Yale by air ambulance.
Yale had nothing left to offer. Alexa came home on oxygen. She was on morphine and hospice was contacted.
We all spent time with her holding her hand and loving her. She passed away on November 7, 2012. She was 14 months old.
We are still grieving and questioning how this could happen. The ups and downs of the past year have been surreal. Rhabdoid cancer is cruel and yes it does SUCK!
We love and miss you Alexa.
Mommy, Daddy, Grandma, Grandad and all her family and friends
Also her Facebook community,
Learn more about Alexa directly from her Facebook page. https://www.facebook.com/HelpingAlexa?ref=ts&fref=ts