Tuesday, August 31, 2021

Where do I turn for Peace?

September is Childhood Cancer Awareness month and I know that I will see many pictures from people sharing Ali's story. And although it brings up painful memories, I am trying to do all I can to do my part as well. This month I have been mustering up the courage to talk about what we've gone through and the importance of this Awareness. 


But with this preparation, I find myself caught in emotions of reliving the trauma. 


When I get those anxious feelings, I turn to the One who brings me peace. And that is Jesus Christ. 


With that, I know there are many who can't understand my reasons for loving someone who didn't heal my daughter in this life.


You could easily be angry and feel betrayed. And honestly, there have been times in my life where I have thought, "Why God? My heart is so broken. Is this what you really want for me?"


Those are all valid feelings and questions. The hurt is real. Someone whom you claim to worship, love and proclaim, has turned His back on you. You aren't just sinking in the water, you are sunk. 


I have been there. Many Many times. But with every single time, there is a but then...


And with that, I'd love to explain my faith and my trust in Him. 


When Ali first got cancer, I was scared. But I had this overwhelming confidence that she would be just fine. And she was. Two and a half years later, she rang the no more chemo bell and my heart rejoiced. We climbed our mountain and all was well. 


And then 10 months later, she relapsed. The cancer had come back.


I remember being so upset with God. For 3 days I did not pray. Instead, my thoughts were...How could He do this to us? How could He let this happen? Were our trials not enough? Why do we keep getting punched down over and over again? Why, when we were trying so hard to do everything right, did this happen? Where are OUR blessings?


All of these questions spiraled through my mind and then I decided I needed to know. 


Do I believe we have a loving God? If so, what is His will and why?


For the next year and a half, I did everything I could to find my answer. And as I sought Him, He revealed His arm stretched out in miracle upon miracle. Tender mercy upon tender mercy. Step upon step. He showed me that He was there. That He was aware. That He had a plan. And that He loved Me.


There are SO many experiences I could share with you that made His love undeniable. All of these experiences which led me to Know Him. To Trust Him. 


Sometimes, when life feels too much, the thoughts still creep in of, "Why God?"...and that is ok. Those questions and feelings are still valid and real...but then...I remember that I'm praying to a God I know and a God I trust. ❤

#iwanttobelikeali

#familiesareforever






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.




Thursday, May 13, 2021

Enduring Grief




I have always loved learning. In school I got good grades and enjoyed all the subjects I studied. I look at life as subjects of learning. I frequently ask myself, what do I need to learn from this lesson that life is trying to teach me.


So when Ali died and I was encompassed with grief, I couldn't wait to learn what I needed to learn and then turn the page as if it were a book in school - just so that I could close it and put it away. 


Living with grief has been one of my hardest lessons. It is the "book" no one ever wants to read. It is every awful emotion you can think of with nowhere to go.


I thought that if I could get to a certain timeline or learn the lesson I needed to learn, things would get easier, but grief never ends. The chapter of this lesson is complex, draining, and all you can do with it is endure. 


Even the thought sounds daunting. 


But in this lesson of enduring, I have learned a lesson that, in my opinion, has been priceless.


Throughout my life I have heard of people testifying that Jesus was the answer to everything. That we could give any burden to Him and He would make them light. (Matthew 11: 28-30).


Was this true? Could Christ really take my grief from me and make this burden light?


These last five months, all I have done was study this. I have immersed myself in all things Him. Each day I will listen to songs, podcasts or scriptures that bring me closer to Him.


One of Ali's and my favorite songs is called, Reaching Out. By Isabella Hickson. 


"He is calling out your name

Through the dark, through the storm

'Cause He knows where you belong

He will help you find the way

He’s the light in your heart

He wants to bring you home


So give your will to Him

That's when the miracles begin


Chorus:

When your hope is fadin'

And the stars refuse to shine

Though you’re stumblin' in the dark

He knows right where you are

When the waves are crashin'

And your burdens drag you down

He is waiting there for you

And His hand is reachin' out


He will lift you to your feet

He will stay by your side

And He'll warm you with his light


So give your will to Him

That's when the miracles begin


Chorus: 

When your hope is fadin'

And the stars refuse to shine

Though you're stumblin’ in the dark

He know right where you are

When the waves are crashin’

And your burdens drag you down

He is waiting there for you

And His hand is reachin' out"


Why do I share this song? Because I have seen that as I have reached out to Him, His hand has always been there. By reaching out to Him, my burdens have been lifted as I have felt Him carry them with me.


To the others who share this book of grief, I leave my testimony with you...that although your grief will always remain, you will not have to bear it alone. I have felt Him carry me each and every day. I know He lives. I know He hears us! And I know that He will help us as we endure these lessons in life.



Thursday, February 18, 2021

Lost

It has been a little over two months since I have held my beautiful girl in my arms, kissed her sweet cheeks and heard her say, “I love you Mommy”. 


Losing Ali put a gaping hole in my heart making it hard to breathe at times. Each day feels like a fight to survive. Every breath I take without her feels foreign. I have walked many hard roads, but this road is new. And hard. So hard. 


Many thoughts have me wondering, Where do I go from here? What makes me happy? What gives me purpose? How do I navigate relationships, friendships, my life? My whole existence revolved around Ali and the world of cancer. Now that she is in heaven and I am here, where does that leave me? I feel lost.


A few years ago Ali was admitted to the hospital to receive another round of chemotherapy. I was laying on the uncomfortable blue couch that folded into a bed. Ali was hooked up to her IV pole in order for the chemotherapy to be administered. I watched as the poison they used to kill the cancer slowly dripped into her perfect little body. I couldn’t sleep as my mind would wander and worry. It seemed as though every time my eyes would finally close, the IV pole would start beeping the loud piercing beep, only to remind me of our circumstances. 



One of the things Ali and I loved to do to lift our spirits is listen to church songs. From birth, I had always sang my girls the song, ‘Walk Tall, You’re a Daughter of God’. It was a song that I had learned as a youth. One that had made me feel closer to the Lord and one I wanted to teach my own children so they would know their worth. 


That night, Ali played that song on her tablet. We sang together the first and second verse as we cuddled each other in her hospital bed. 


‘Right now I have a prayer deep within my heart.

A prayer for each of you there is a special part.

That you remember who you are and Him who lives above.

Please seek for Him and live His way;

You’ll feel His love.

 

Chorus

Walk tall, you’re a daughter, a child of God.

Be strong please remember who you are.

Try to understand,

You’re part of His great plan.

He’s closer than you know

Reach up, he’ll take your hand.

 

Long before the time you can remember,

Our Father held you in His arms so tender,

Those loving arms released you as He sent you down to earth.

He said, “My child, I love you.  Don’t forget your great worth”’



Then the third verse played. 



This life on earth we knew would not be easy.

At times we lose our way

His path we may not see.

But please remember always- please-that you are not alone.

He’ll take your hand.

He loves you!

He will guide you home’


As the third verse played, I pictured being in a swampy forest, lost on a path I did not know. I was lost. This was not what I pictured for my life and especially not for my daughter’s life. As those words were sung, I knew that although I felt lost on a road I did not want to be on, there was one who knew exactly where I was. It was Him who I could trust to direct my path. He was my compass who would lead me to safe ground.



Now I find myself on a road that is just as mucky. My swampy forest is now a rocky touraine. My feet are bloody from the rocks I have stumbled over. I am wounded and I feel lost once again. I don’t know how to move forward or where to go. But just as before, I will trust those words that spoke so warmly to my heart. 


‘Please remember always- please-that you are not alone.

He’ll take your hand.

He loves you!

He will guide you home’



Sunday, January 17, 2021

Trusting God when life doesn't go your way

 

Trust.


About a year and a half ago I was laying in the hospital room with Ali. She was awaiting her second Car-T therapy trial.


In simple explanation, Car T therapy is where doctors collect the T cells from one of your arteries and re-engineer them, making them into cancer fighting cells. Once re-engineered, they are then placed back into your body where they seek all cancer cells out to destroy them. 



When we had learned the cancer had returned, our Oncologist suggested we participate in a trial that both Stanford Hospital and NIH in Maryland were offering. Although we did not want to go out of state for treatment, we were grateful for options. We were told that the plan would be to fly down to whichever hospital we chose, harvest cells, and in one week's time, return to have the cells put back in Ali's body for a hope at a cure. After discussion, we chose to go to Stanford Children’s Hospital since it would be closer to our extended family that lived in California. 




We flew out May 13, 2019 to California. After Ali's cells were collected, we decided to fly home and wait the week out in Utah while the lab regenerated her cells. At this point, the Leukemia cells were 74% of her body. It was a pretty scary spot to be in medically. The day after we arrived home, the hospital called and said there was a problem.


My first thought was, “Oh no! What could have happened?” You can imagine my anger when I had learned that the “problem” was that the air conditioner broke in the lab so they closed for maintenance. Because of this, everything was put on hold. Her newly collected cells would now need to be frozen as they awaited maintenance to fix their facility and start work again. They estimated about 6 weeks.



All I could think was, “What!? My child’s life is in danger because of air conditioning?” I was so mad! How could this happen? To make things worse, no one seemed to be apologetic! Did they not care? How was Ali going to be able to hold on? The whole thing was so unfair. I beat myself up thinking, "If only we had chosen the other hospital, this never would have been an issue." But now it was too late. We had to wait it out. Our oncologist in Utah suggested we give Ali a lower dose chemo as we waited in hopes of keeping everything at bay. 


More chemo pumped into my child's body over air conditioning?! No. This isn't fair. But it was our only choice.


While waiting, Ali was admitted to the hospital June 1st for a fever that lasted over 30 days. Every day she got worse. As the cancer got worse she would only awake for about 30 minutes each day. Watching her fight for her life was excruciating. 



One night, I laid awake feeling so sorry for myself. How could this be our life? This was torture! I felt angry, sad and forsaken. And here comes the question...One of my journal entries I wrote, 




-"I guess it basically boils down to if I trust God or not. I want to say that I'm faithful enough and my answer is yes. But when I think of trusting someone, I think of trusting them to not hurt me. And that hasn't been the case nor do I feel that will be the case to come. There is always hurt in this world. That is a part of life. So how does one trust someone when they know at some point in their life that person will cause them pain?


I know Heaven is supposed to be your reward and all will be made right in the end. But will it? Will we look back at our pain on Earth and truly say it was worth it? That is what Christ has promised right? "I never said it would be easy, only that it would be worth it". 


Tell me how to have that kind of faith? Tell me how to feel the Spirit and just KNOW." -




Wow...what a hard question. Now looking back, I am even more grateful to Heavenly Father for not taking Ali home at that time. I'm grateful for every moment I was given with her but also for the fact that the Lord knew me. He knew I had so much learning to do. I would have been so angry with Him. So what has changed?


Since then, I have learned that He does not give us trials to hurt us. Trials come in all different forms. Some from choices we have made, some from choices others have made, and some just from being human. I cannot be angry with God for letting me experience an Earthly life. Trusting Him does not mean you will be without pain. Trusting Him simply means knowing that He will carry you through as you reach out for Him. Trust is built by recognizing His hand in all things.


Ali had that kind of faith. She knew Him. She loved Him. She saw all the good He brought into her life. She had said so many times when asked if she was angry with God, “No, He has been there for me through all of my trials.”



We snuck Mylo in almost every day to see Ali in the hospital while she was in Utah.