Answers to Prayers

For years, thousands of people prayed for Ali to get better, so why was that prayer not answered? Or was it? I wanted to share just some of the prayers that were answered for me. 

After Ali’s first relapse, I felt in my heart that Ali was needed home in Heaven. Why was she needed? I do not know. Perhaps she was just too perfect for this world and she didn’t need to learn and grow as much as the rest of us. Perhaps she needed to help others who have already passed or watch over those here on Earth with more ability to help without the physical restraints of a body.

As gut wrenching as this feeling was, it changed the way I prayed. I prayed I would be able to keep her with me, but tried to accept that His will be done. One of the biggest things I prayed for was more time. I prayed that if Heavenly Father needed her home, He wouldn’t take her until the absolute last second that needed her there. 

It was June 2019 when Ali was in the hospital awaiting her Car T cells to be made. The lab had made an error in processing time and what should have been a week turned into six weeks of waiting! At the time, Ali’s body was consumed with leukemia cells. I had no idea how she would be able to hold on. 

Ali had always been very involved in her fight. Never once did we ask her to keep fighting solely for our purpose. We made it very clear that we would fight with her and help her in any way she needed. That day, a member of the palliative care team came in to talk with me. She told me that even if Ali pulled through, I need to ask myself the question, “at what point do you choose quality of life over quantity”. In her opinion, she didn’t feel like I should put Ali through any more treatment. This was one of the hardest conversations. It just didn’t feel right to me.  For some reason, even though I saw the state my daughter was in, my gut told me that this wasn’t the end and we needed to push on. 

I remember praying that night, telling Heavenly Father what was in my heart and what I was feeling. I pleaded with Him that if pushing forward was right, he would bless me with more time. Although I knew the possibility of her outcome, I wasn’t ready yet to let her go.

July 1st, Ali was life flighted to the hospital where her cells were finally ready for her. Within a month, she was declared cancer free for the fifth time!

Although the leukemia didn’t stay away forever, we were given so much more time. Exactly what I had asked for. It reaffirmed to me that it is ok to ask for things. It is ok to plead with your Heavenly Father. He is your Father and WANTS to bless you. 

When she was admitted in September for sepsis, I prayed that she would be able to go home and spend more time with her family and those she loved. I didn’t want her to die in a hospital. Three weeks later, her organs were miraculously healing and she was able to go home where she spent five more weeks with her family. 

Time and time again I have been shown that if your desires are righteous and you are willing to accept His will regardless, He will answer your prayers as any loving Heavenly parent would. 

I really could go on and on about small yet mighty prayers that were answered. Some prayers where I couldn’t find something I needed. I would pray that He would help me and I’d look up and there it was! Some prayers where I felt alone. A knock on my door came with a note from a neighbor saying how much I was loved. Through these answers, I have developed a relationship with my Father in Heaven. I have learned that He is there. Always. 

I remember the night she passed away. It was one of the most excruciating nights of my life. Watching her struggle to breathe and knowing the end was near was incredibly emotional and painful. My husband and I didn’t know how long it would last as the hospice nurses told us it could be days. 

I prayed to Heavenly Father that if he were to take her, that He would take her before the kids woke up. I didn’t want them to see her this bad and wanted to shield them from any unnecessary pain. As the night continued, I humbly told my Father in Heaven that I trust Him. I trust Him in all things, including His timing. 

Ali passed away at 6:50 AM. Right before the kids were to wake up. Everything I had asked for. 

Although this journey has been one of the hardest roads I’ve ever walked, filled with unmeasurable pain, it has brought me closer to Him. I have felt joy in knowing that my prayers have been heard! That He hears me and loves me. He has taught me that it is ok to turn to Him. That I can trust Him! Sometimes prayers aren’t answered the way we want, or when we want, but as Elder Jeffery R. Holland has said, “they are always answered at the time and in the way an omniscient and eternally compassionate parent should answer them.”

Testimony

 Alexandria Nicole Herbert

10/19/2010 - 11/29/2020

Our Brave, Beautiful, Kind, Happy girl passed away this morning.

As I think about my daughter's life I'd love to share my testimony (written a couple weeks ago).

It was 2015 when my daughter, Ali, was diagnosed with Leukemia. I'll never forget that night when our whole entire world came crashing down. I was scared, felt completely helpless and wanted so badly to somehow change the course we were now facing!

The next night, the bishop from our church and his counselor came up and administered a blessing to Ali. After the blessing, the first counselor spoke, telling us that he had a very strong feeling that this was the road Ali needed to go down but she would be ok. Those words rang Over and Over in my head the whole entire time she went through the 2.5 years of treatment. In June 2017, Ali rang the no more chemo bell and she was declared cancer free! I remember thinking of those words promised and my heart was filled with so much gratitude!

Unfortunately,10 months later we found out the cancer had returned. My heart was shattered. I couldn't understand why this trial was asked of us yet again! Were we not faithful enough? What did we not learn that we needed to learn now? Why was this happening? I quickly requested my husband give Ali a priesthood blessing. Hoping I would receive the same confirmation that all would be well. But this was not the case. After the blessing was given, Jess talked to me privately telling me that he had a horrible feeling that Ali was not going to make it. He said he felt very strongly that she was very important to Heavenly Father and that He needed her home. I was crushed. And confused. I felt every emotion you could feel, but mostly denial. Later, I decided that as her mother, I had the right to feel if that feeling were true! So I asked...and I didn't get a straight answer. I only got the feeling of hope, so I clung to that feeling as tight as I could.

Ali began chemotherapy again. Her now beautifully grown out hair fell out once again. Watching her in pain was excruciating. Each night in the hospital I played church songs until we would both fall asleep. I needed to feel Him close and know that He was in every detail. Every night I would cry out to Him and every single night, He came. The spirit would fill our room like no other feeling in the world. Although our circumstances were not changed, I could feel Him there right beside us.

After a month, we learned that the chemotherapy was not working. The leukemia was aggressive and we needed to try something else. A little voice reminded me of the words my husband uttered just weeks before. "Nope," I would say to myself and I kept pushing on. We proceeded with a trial drug which ended up putting Ali into remission! "Yes! There is hope!" But a few months later, the trial drug stopped working and Ali needed more treatment. There was that little voice again. I begged Heavenly Father for more time. "Please, just give us more time...don't take her yet."

Next was a bone marrow transplant. This was what felt like an unattainable battle as we found out that out of a world wide registry, Ali had not 1 perfect match. How could we get through this? Is this what was going to take her home to heaven? We proceeded on with faith and with myself being her donor as a half match. Ali did great! Miracle after miracle was given. But then again, a few months later, the cancer was back. The doctors gave us another option of a trial out of state. We said yes and for 1.5 more years, the same pattern followed...remission, hope, relapse, heartbreak. Six relapses later, we knew her body could not endure anything more. We knew that we had done everything medically possible to help her but ultimately, what was felt in that blessing years ago was true. Ali is very important to Heavenly Father and He needs her home.

This has been extremely hard for me to prepare for. You see, Ali is my best little friend. She is kind, happy, thoughtful, caring, and has the sweetest smile I've ever seen. The only way I can cope with knowing that my little girl won't be here on this Earth with me for much longer is knowing that there is a bigger purpose.

Through these years of trials, I have SEARCHED for understanding and answers. With that searching, I have found my Savior. Every time. He is there. Holding my hand. Walking through these trenches with me.

As I prepared for this October General Conference, I was laying next to Ali's hospital bed. I prayed to Heavenly Father that I would feel the spirit and have peace about Ali. The very first talk was given by Elder Bednar. In his talk he spoke about a missionary who had suddenly died and spoke of what his parents had said at his funeral. "He forthrightly declared that he personally did not understand the reasons or timing for such an event. But I will always remember this good man declaring that he knew God knew the reasons and timing for the passing of his child- and that was good enough for him."

I will NEVER forget the feeling that came across me when I heard those words. For I feel the same way. I do not understand...but I know that HE knows and that is good enough for me. I trust Him with my whole heart. He has been good EVEN WHEN life is hard. He has been merciful EVEN WHEN life seems so unfair. He has been loving and understanding and has given me EVERYTHING I have asked for and more in so many ways. How could I not trust Him? He is my HOPE. He is what I cling to when I feel as though I cannot go on.

I bear my testimony to you that I know He lives. I know He is aware of us. He hears us!! I know that through the atonement, the restoration can work in my life as well and all things broken can be made whole again. You can have Hope in this life because of Him!

#iwanttobelikeali

#familiesareforever

"Is It Christmas Yet?"

 CHRISTMAS

11/27/2020

Ali was in and out of sleep. Her oxygen had dropped to the 70s. When she was awake, she was a little confused. That night she awoke and asked, “Mom, is it Christmas?” I didn’t know what to say so I initially said yes thinking it would make her happy but then she would forget and drift back to sleep. However, she did not go back asleep. When I replied, Yes, she then wanted to open her Christmas gifts! Since I had not done any shopping, we had None for her to open!! I quickly said, “Actually, it is Christmas Eve...Christmas is tomorrow morning!”

She then wanted to prepare. We set cookies out for Santa and Lyla wrote a note to him. She asked if I would get her her Christmas pajamas. After I dressed her, she wanted to paint her nails Christmas colors. We brought her into the kitchen where I painted her nails red, white, red, white. She could barely hold still for them to cure in time. They looked a little messy but she loved them. She was very weak and was drifting in and out of sleep through the whole thing. 

After she was tucked back into bed, I asked Caleb’s girlfriend, Kinsey, if she could help round up some gifts for Ali to open in the morning. I messaged my friend, Jill, to see if her husband could come by to play Santa. Our neighbor, Dave Wilding, asked if he could sing some carols in front of our house. 

11/28/2020

The next morning, Ali awoke and the first thing she asked was, “Mom, is it Christmas yet?” I was kneeling by her bed and happily replied, “Yes baby, It is Christmas!”

She smiled so big with her eyes closed and said ever so sweetly, “Yay!” She then opened her eyes, took her warm little hands, and placed them on my face. She pulled me in close to her, kissed me and said, “Thank you Mommy! I love you so much!!”

We carried her into the living room by the Christmas tree and let her open all the gifts that were wrapped for her. Every gift she got, she was so grateful for. I am not sure she even knew what she got, but it made her so happy. One gift was from Clark. He had wrapped up a little red bird. When she saw it, she snuggled it close and was so happy. She then worried about everyone else’s gifts. She felt badly they didn’t have any. We reassured her that they did and that they had opened them already because they were impatient with her sleeping so long!

After presents she went back to her bed to sleep. Her aunts and cousins arrived as well as Santa! Our neighbors from all over the street had gathered together to sing her favorite Christmas Carol in the front yard. We wrapped her up in a blanket and carried her to the porch. There she sat and watched as they all sang, Silent Night. It was so beautiful. She gave a little wave to all her friends and Daddy carried her back in so she could see Santa.

There in the living room, Santa sat on our big white chair and Ali was placed on his lap. She pet his beard and patted his bells. He asked her what she wanted. She softly mumbled as he rocked her back and forth. He told her how much she was loved and how special she was and that he knew she was such a good girl. She started to fall asleep in his arms as they snuggled. 

To see Ali so happy was one of the greatest gifts I could have been given. I loved watching her as she was so full of gratitude for every little thing that happened. It was a simple day, but was the most beautiful Christmas I've ever had. I think about the symbolism of that Christmas. How we all wonder and await our ultimate Christmas morning asking, "Is it Christmas yet?"

Soon

 

Ali passed away on the morning of November 29, 2020. So many tender mercies happened in the weeks before. I wanted to record them so I do not forget.

11/22/2020 - One week before her passing.

Ali was laying in her bed in her room listening to the song, 'Reaching Out' by Isabella Hickson, over and over and over. I heard her crying so I went into her room to see what was wrong. It was frequent that she would be in pain so I worried that was the case. I asked, “Ali, are you ok?”

She nodded through her tears, “Yes, I just feel the spirit.”

I quickly gave her a hug and told her how wonderful that is. How I’m so happy she is able to feel that comfort. She said, “Mommy, Jesus told me He is coming to get me soon.”

After I loved on her and comforted her the best I could, she came into our room and asked if it would be ok to give the kids their Christmas presents she had made for them since she was worried He was coming to get her that night!

We gathered in my room and one by one she gave them the bears she made for them and had them play the recordings she had recorded telling each sibling what she loved about them. 

She told everyone how much she loved her family and how she hoped they wouldn’t forget her! We all reassured her that it would be impossible to forget her. We all told her how much she meant to us.

She then cuddled with us in bed. She refused for me to leave her side. She clung to me and wouldn’t let go, even to go potty. She really believed He was coming That Night for her and didn’t want to be alone for even one second. We both talked about how we wish we could go to heaven together. I told her story after story of memories I have of her. From the time she was a baby and pooped on Uncle Ross to all the many things I adore about her. She laughed and felt so good. She said, “Thank you Mommy for helping me feel better.”

We ended the night watching Julie and the Phantoms. One of the many things I love about Ali is how much she loves love. As we watched the show, she called dibs on Luke and we giggled and swooned as the romantic parts came on. 

Looking back at this day, I find it merciful that He would prepare her by telling her she would be coming Home soon. As I have reflected on this event, I have pondered a lot on what His timing means. This event occurred one week before she passed. She had felt when He told her that He would be coming soon, that it would be that night. She was certain. But He didn't come for another week. So what does "Soon" mean?

Ali's Story

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