Wednesday, July 28, 2021

Ali's Full Story - Brave, Beautiful, Happy and Kind

 Ali’s Story 🎗

(written by Heather, Ali's Mom)


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 B-cell Acute Lymphoblastic Leukemia. 





After diagnosis we spent 2 weeks in the hospital in the ICS unit of Primary Children's. 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! 


Chemotherapy was hard and scary. Ali had a few allergic reactions to some of the chemo's 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. 


10 months later, 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 we did bloodwork and it was confirmed that my fear was a reality and Ali had relapsed.




She immediately 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 had 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. Her hope now was 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 released from the hospital but are required to stay close by 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. 



The doctors tell you that if you can get to day 100, you have a good chance of everything working. We crossed our fingers, prayed and watched as we awaited that day. 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. 


On day 100, Ali had another bone marrow aspirate where we learned Ali had relapsed once again.


Every day we fought to control this 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 while walking 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!!



Although we celebrated, the doctors warned us that it was just a matter of time before the cancer would come back. We changed her diet, making everything as healthy as we could, added supplements and vitamins and clung to hope.


In May 2020, our short lived reprieve was cut short as we learned the cancer was back. This was her 6th relapse in 5 years! In last stitch efforts Ali tried a different chemo called Blinatumomab. It was given through a picc line, transfusing 24/7. The chemo was put in a backpack which she carried around all summer long. 




Her body didn't respond to this chemo like we had hoped, so at the end of August, we enrolled in a new trial. This trial had very little hope of success so we discussed things with Ali letting her make the final decision. Laying everything out, she chose to fight and we were behind her! 

Although her mind and spirit was determined, her body was tired. The trial was harsh and the chemo she was given caused her organs to shut down. On top of this, she went septic from an infected central line that had been incorrectly placed three different times in the last three weeks. All of this to learn the trial failed and the cancer was still present.


It was all so overwhelming and hard. But Ali remained a light. Through all she went through she still remained kind, loving, patient and so so good.


Miraculously her organs recovered. She was able to be released from the hospital and go home in October. In that month she celebrated her 10th birthday and had so many happy memories with her family. She was put on hospice in November and passed away on November 29, 2020 (on my birthday) surrounded by her parents and her beloved pets.


Ali's story is long and hard but it is also one of love, faith, miracles and perseverance. She showed so many how to find faith, love and joy through all things. She will always be my favorite human, my very best friend. I am so proud to be her Mom.


#iwanttobelikeali 





Wednesday, July 21, 2021

But what if???


I saw Ali's picture on a flyer tonight.

It wasn't this picture. 


Not a cute smiling Ali with pink hair carrying her chemo in a backpack as it infuses 24/7.


It was a picture of her in the hospital. When she was so so sick. A picture of my daughter struggling to just live.


The flyer with her picture was meant to bring awareness and help to others.


But seeing it made my heart pound and my stomach just ache.


It is hard for me to think about all the hard we went through. The reality of life and the trauma we endured.


So I shove the thoughts aside as quickly as they come. As if it never happened.


But the truth is, it DID happen. 


It was traumatizing, horrible and so so hard.


As I let myself think about it, I think about how unfair it was that this all happened. Leukemia was supposed to be the "easy" kind as we were reminded by so many time and time again. The cure rate is over 80%. So much hope was given that all would be well and this was just something we had to get through.


But that wasn't the case. It was hard and horrible with an even harder ending. 


When I let these thoughts enter, I then think about how 'if there were a cure', or 'if there was better funding'... these thoughts spiral to a helpless, frustrated end.


But the truth is, IF Ali was suppose to get better, she would have. 


Thought change.


I've heard several times that 'If God was a loving God, then He wouldn't have taken my baby.' Or 'There is no God because my child wasn't healed.'


But what if…there is more to the puzzle?


What if we DO come to Earth for a purpose? 


What if we DID know our hardships before we came to Earth and we still chose to come? 


What if God is STILL good even when the trial isn't taken away? 


These are my thoughts. My convictions. My beliefs. 


Every time I start to feel sorry for the story that unfolded, there is always a 'But' that comes. And then I CHOOSE to Believe and Trust there is more than just a sad ending. With the thought...but what if. ❤


Monday, July 5, 2021

Learning to Swim

I first have to say that I have always loved to be close to the Lord. But since Ali is now with Him, I have developed an even deeper relationship with Him. When I feel close to God, I feel Heaven and when I feel Heaven, I feel her. 


So I do everything in my power to build that relationship. I study, I pray, I listen to uplifting music, etc. Anything that will help me grow closer to the Savior. 


But this last week, I have been extremely sad. I cried every day and I couldn't shake it. I missed Ali more than usual and no matter how often I prayed or read my scriptures, nothing seemed to make it better. It was so frustrating. 


I woke up this morning and I was reminded to think about what I dreamt. I realized it was about Ali! I don't remember what exactly the dream was about but I saw her and it felt amazing!


I got out of bed, turned on music and started getting ready for church. I put my Playlist on shuffle and the first song that came on was, 'Reaching Out', by Isabella Hickson. This song always makes me think of Ali. I felt so close to her in that moment. Like she was visiting me.


I LIVE for those moments. Just little nudges from her letting me know she hasn't really left me. I have been NEEDING to feel just a little bit of that feeling lately. I have missed her so much and this morning filled my soul for just a second. A sweet second of relief. Finally!


As I was listening to the song, I started praying to Heavenly Father. I thanked Him for letting me feel Ali close and then, as if He needed the reminder, I told Him that I HAVE been reaching out for Him, but lately I have felt silence. Disconnected in a way that has made me feel frustrated. I asked Him why, when all I want to feel is that Spiritual upliftment, do I feel silence? Why does this happen?


I then had the picture pop in my mind, of Ali swimming when she was little. Being a lifeguard in my youth, I taught all the kids to swim. My mind could picture her right there in the pool with me. She was my most scared child. She loved the water but enjoyed having me hold her as we swam around together. She never wanted to let go. But she needed to learn to swim!


I would sit her on the steps and have her swim to me. As she swam, I would take a few steps back until eventually, she had swam across the pool. She did it!! 


As I was thinking of that memory, I pictured her arms stretched out Reaching for me. That is me. Reaching out my arms as far as I can stretch them, yet swimming on my own. 


But wait. I don't want that. I want to be in my Savior's arms while I kick my feet with Him holding me, swimming together. Always connected, always spiritually uplifted, always safe.


But that is not why we are here. We are Spiritual beings having a Mortal experience. Here to learn, grow and experience life. Not to have Him hold us the whole time we are here. When we need Him, He is right there to pick us up from the water, but there are times where we need to do the strokes on our own. 


I've realized that the silence I have felt lately has not meant He has left me. Instead, perhaps the silence has been the Lord teaching me to swim.