Ali’s Story
Alexandria (Ali) is the youngest of 6 kids! My husband and I married in 2013 when she was just 2 years old. We blended our family (his 3 kids and my 3 kids) making Ali, the baby! She has been adored by all her siblings and has been the light in our lives!
It was barely 2015 when I noticed Ali sleeping a lot. She had just turned 4 years old and would occasionally come to me saying her legs hurt. The pain would come and go, so as a mom, you brush it off as growing pains and are grateful your 4 year old still takes naps!! However, the pain wasn't getting better. After my mom came to town to visit, she had a very strong feeling to take her in. We made an appointment with our pediatrician who then told us to go to the local emergency room to have her looked at. There, they drew her labs and told us they suspected leukemia. She was put in an ambulance and rushed to Primary Children's hospital in Utah where they then took another sample of blood. On its way to the laboratory room, the samples were accidently dropped and the nurse needed to take another sample. Holding down my screaming daughter for the third time that night felt like torture. She kept looking at me confused wondering why I was allowing someone to do this to her. Little did I know, that night was just the beginning. At 3am, Feb 15 2015, she was diagnosed with very high risk Acute Lymphoblastic Leukemia.
After diagnosis we spent 2 weeks in the hospital in the ICS unit of Primary Children's Hospital. It seemed like the longest 2 weeks of my life. My husband and I slept on a small sleeper sofa at her bedside together and never left her side. Nurses and doctors constantly came into our room trying to educate us on our new life. The medical terms and information given made me feel like I was learning a new language. Everything was foreign and overwhelming. Before they released us, they gave us a small tour of the unit and showed us where we would be receiving the majority of her treatment. I remember as we walked down the hall, I felt as though I was being "sentenced" to a road I did not want to go down! The clinic was cold and gave me a chill that I'll never forget. They took us down the hall of the clinic to show us the infusion chairs. As I saw all the little bald heads and all the kids with tubes hooked up to them, my heart just pounded. How could this happen? My little girl would now be going through this! That is when reality really started to sink in. This was now my life and there was nothing I could do about it!
Chemo was hard and scary. Ali had a few allergic reactions to some of the chemos given. In a matter of seconds she went from playing, to not being able to breathe, swelling up and vomiting all at once. After enduring 2.5 years of treatment she was able to ring the no more chemo bell in June 2017!! When we rang the no more chemo bell at the end of treatment, I was extremely emotional. Knowing that you had to give your child poison in order to save their life was a very difficult thing to grasp. I was so grateful to be done and move forward with our lives.
Unfortunately in April 2018, Ali started having fevers with no other symptoms. My mama heart panicked as the fear of cancer relapsing always dangles over your head. A week later it was confirmed that Ali had relapsed.
She started a phase called reinduction where they give you intense chemo with hopes of remission after 30 days. The day I packed my bag in preparation for that 30 day stay was so heavy. I felt angry, sad and so many emotions. We had already battled this beast and I did not want to battle this again. It just didn’t seem fair. Seeing her having a port placed, hooked up to her dreaded machines and losing her perfectly grown out hair once again, felt like a punch in the gut.
Unfortunately after those 30 days were up, they tested her bone marrow and found she did not reach remission like the doctors had hoped. She was then moved to a higher risk of leukemia called relapse refractory ALL.
Months followed of more harsher chemo but nothing was working. Test after test of let down. Finally, in Sept 2018, she had Car T therapy (Kymriah CD-19) and did great. 30 days later she was cancer free!! Unfortunately, the celebration didn’t last long. 90 days in, we learned the cells had stopped working. She now needed a bone marrow transplant.
Hearing Ali needed a transplant was the scariest feeling I felt. She had 0 perfect matches for a transplant in the whole entire world wide registry! Many of my fellow cancer mom friends had told me their child had 100s if not 1,000s to choose from. How could Ali not even have 1?
Because of this, I was her donor. I qualified as a half match since I was her mother. We were told that this haplo donor process had proven to have good results, so although we were scared, we were hopeful. She had her transplant Jan. 11, 2019 and all went pretty smoothly!! After a transplant, you are required to stay close to the hospital for 100 days. Since we lived over an hour away, we were told we needed to stay at the Ronald McDonald house without our family until she was cleared to go home.
It was really hard to be without my husband and other 5 children for that long. Ali and I missed everyone so very much. She especially missed her pets! We tried to appreciate the time we had together and soak up the girl's time. We got the ok to come home in April 2019. It felt SO good to be home.
Unfortunately, on day 100, Ali had another bone marrow aspirate where we learned Ali had relapsed once again.
Every day we fought to control her disease. The plan was now to fly to a hospital out of state (Stanford Children’s Hospital - Lucille Packard’s) and enroll Ali in a trial of a different version of Car T. Ali flew out in May and had her cells collected. We were told by her doctors that it would take a week to process them and then we would come back for her procedure. A few days after her collection, the hospital called to let us know there was a problem with the lab. They closed the lab due to maintenance and couldn’t process Ali’s cells for 6 more weeks. I was angry, frustrated, but most of all scared at this news. While waiting for the cells, Ali’s leukemia had spread to over 90% of her body. She needed to somehow hold on. She was hospitalized and given more chemotherapy to try to reduce her burden, but her body was not tolerating it and she got extremely sick.
She was completely out of it and only remained awake for around 30 minutes of each day. She cried to walk and was so weak. She was dying. One night she started reaching for things in the air. She was delusional and I thought this was the end for her. My husband rushed to the hospital to be by her side. He gave her a blessing and we prayed together. She made it through the night and on Monday, July 1st, Ali was life flighted to Stanford where she was finally able to receive her Car T cells. After 28 extremely hard days, she was declared cancer free for the 4th time and was released to go home!! What a miracle!
We spent 5 months at home before learning Ali had relapsed again. We flew back to Stanford Children's at the end of January 2020 where Ali received a second dose of the same Car T cells. Once again, 28 days later, Ali was declared cancer free and was released to go home. This was her 5th victory against cancer!!
The days before our departure home, we had many meetings with several different doctors explaining how there were no more medical treatments available to help Ali. We needed to decide as a family whether we wanted to have quality of life or quantity of life. We will Always fight for Ali, but now, we had to figure out what we were fighting for. All any parent wants is for their child to be happy and healthy. Sometimes health isn’t in the cards, so as her parents, we will do everything we can to help her to be happy.
We are home now and are trying to soak up every moment with her. The doctors have warned us that it is just a matter of time before her cancer will come back. When that happens, her time here on Earth will be short. That thought is excruciating and debilitating. Just writing it down makes me sick inside. Every 3-4 weeks we head down to the hospital to get labs. We have tried a new medication in hopes to help her stay healthy. We have also added many supplements, vitamins and healthy foods to her diet.
This journey has been long, hard and emotionally draining. However, through it all, Ali's light has remained a constant. She enjoys everything about life and brings everyone so much joy. I am so very grateful, blessed and honored to be her mom.
#iwanttobelikeali
