28 April 2015

Hope Bringing Hope

Recently my sister emailed me the story of her dear friend's 21-month old daughter, Hope.  Hope was recently diagnosed with cancer, a malignant tumor the size of a baseball grows at the base of her spine. She has started chemo therapy and because of it will lose most of her hearing. Her name is so very apropos, as I read these tender emails from her parents.  
 An account from Hope's dad:
Hope’s second five-day round of chemotherapy is staring us in the face. Part healing angel and part poisonous dragon, its enigmatic gaze enthralls and haunts. Irresistibly, we draw closer. Tomorrow seems here today. Are we staring at life or death? Or both? We can’t be sure. As Paul wrote, “Now we see through a glass, darkly” (1 Corinthians 13:12), which is why we “walk by faith, not by sight” (2 Corinthians 5:7). We know that what we see is only part of the reality that God—who perceives time as we perceive space—sees for Hope. Therefore, despite the darkness, we trust in Him, whatever may come.

While we wait upon Him, He gives us “tender mercies” (see Psalm 145:9) to shine flecks of light through sacred cracks in our dark glass. Tonight was no exception. As I brushed Hope’s teeth in preparation for bedtime, I couldn’t help but notice how much hair she had lost in the past few days. Patchy and brittle, her remaining strawberry blonde wisps were a painful reminder of her mortality. I winced as I saw her hair covering my pants. Its strands were so frail and lifeless. Were they so many harbingers of the future? I grappled with the thought and found solace in the truth that “a hair of [her] head shall not fall to the ground unnoticed” (Doctrine and Covenants 84:116). I felt that God was deeply aware of Hope’s journey—and my heartache over it—and He did “not leave [me] comfortless.” In a tender way, He came to me (see John 14:18) a few minutes later.

As I read Hope a cute board book from Aunt Ashley, I used my silliest voice to ask, “What does the owl say?” and Hope said, “Whoo, Whoo!” She giggled sweetly. The hair in her lap didn’t seem to bother her at all. Then I asked, “And what does the cow say?” “Moo, moo!” she responded proudly and grinned from ear to ear. At that moment, a picture of the Savior on her bedroom wall caught my attention, and I felt prompted by the Spirit to ask an unplanned question. “Hopie,” I stammered, trying not to give away my emotion, “what does Jesus say?” I had never asked her that question, and I had never heard anyone else ask her, either. As I waited with anticipation, she snuggled into my shoulder, opened wide her big blue eyes, and whispered, “Hold you. Jesus say, ‘Hold you.’”

I burst into tears. I gently pulled her little body into mine and hugged her as I sobbed deep, heavy sobs. I couldn’t stop. For several seconds, with her little, pudgy arms, she held me, too, and then whispered, “Love you, Dada.” I couldn’t help but feel that God had given us that moment for a special reason and that, once again, Jesus was holding our family in His loving arms.

A few minutes later, I held her up to the light switch, so she could turn off her bedroom lamp. After saying goodnight to the trees in our front yard and a blue glass star that hangs in her window, she put her head on my shoulder. I began to sing her favorite song: the LDS children’s hymn “I Am a Child of God.” For some reason, though, when I started, I sang, “Hope is a child of God, and He has sent her here,” instead of the normal lyrics “I am a child of God, and He has sent me here.” I felt that I should continue in the way in which I had begun, so I sang, “Has given her an earthly home with parents kind and dear. Lead her, guide her, walk beside her, help her find the way.” Then I stopped. I knew all too well which words came next and had already started to think about when the “someday” in “to live with Him someday” would come for Hope. I couldn’t finish the song without breaking into the same deep, heavy sobs from before.

I didn’t want to scare her, but I just couldn’t stop. I hugged her close. She pushed away because she wanted to see my face. I smiled as much as I could in between the tears. All I could say was, “I love you, Hopie. Daddy loves you. Daddy loves you so much.” My mind was full of the doctors’ solemn reports that the second round of chemotherapy was usually when Cisplatin began taking a devastating toll on a little one’s hearing. We had already noticed that her little voice had started to sound different, but she could still communicate so well. It was heartrending to contemplate life without that little voice and those little, functioning ears. And worse, it was gut-wrenching to imagine a silent room: one completely silent, without even the pitter-patter of little feet.

All of a sudden, Hope sliced through the darkness of the room and my overactive imagination with a truth: “Daddy silly! Daddy silly!!” Her happy voice, and the words she spoke, snapped me out of my mental paralysis. She was smiling. Her little hands held my face. They held my heart. She was right. Daddy was being silly, and I told her so. I had been mourning races that had not yet been lost and the ice of winter in the midst of summer’s breezes, rather than treasuring the hearing, breathing child who bounced happily in my arms and trusting in the possibility of an endless stream of happy eternities with Daddy’s little girl.

Even though her gentle reminder allowed me to finish the song by singing, “Teach her all that she must do to live with Him someday,” I knew that, in that moment, she had been the one teaching me. And I was just praying to learn from her. As I put her down in her crib and kissed her goodnight, she told me again, “Love you, Dada!” and then, with a wry smile, pointed to the feeding tube in her nose, giggled, and whispered, “Tube nose!” In the darkness that seemed so much lighter than before, we held hands and laughed together for a perfect moment. Gentle, rolling tears trickled down my cheeks and wet her blanket, but this time they were tears of joy: joy for the Lord’s many tender mercies in my life, especially the twenty-one-month-old one in the crib beside me.
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Just moments later, this joyful update came from Hope's mom.  The tears began to roll as I read it: 
Even with the challenges of this hospital stay, though, Nick and I feel an overwhelming sense of gratitude. There has always been hope through the Atonement that all will be well regardless the outcome of this cancer. There will always be that hope. I can't even tell you the peace that comes with knowing that God is in control of this situation. As powerless as I may sometimes feel in this life  (and yes, the powerlessness can feel very profound when one has to watch a little child as precious and innocent as Hope suffer the effects of cancer and treatments), the knowledge that God knows the end from the beginning, that He knows and loves Hope even more than we do, and that what He allows/does in her life is really according to His plan and purposes for her fills us with the resolve that we need to move forward with a faith that carries us from day to day.

My favorite scripture for the past couple of years comes from the Book of Mormon: "And Christ hath said: If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me" (Moroni 7:33). I have tried so hard to live this scripture in the daily challenges of life. Sometimes I fail in my efforts to be as faithful as I desire. But in this particular experience, I have felt and witnessed the truth of this promise from the Savior. He has seen that in this trial it is expedient for us to receive His power, and that power has poured from heaven like water from a faucet onto my parched soul, filling me with His love and with spiritual and physical strength beyond my meager abilities. I can rejoice with Alma and his people that the Lord has "ease[d] the burdens which are put upon [our] shoulders," and I can witness that the Lord is a god of truth, and when He has said, "I, the Lord God, do visit my people in their afflictions," (Mosiah 24:14) His promise is sure.

Now, on top of that unfailing power and hope stemming from the Atonement, we have hope that Hope's cancer fight is going in the right direction. The doctors decided to do an ultrasound on Hope's bladder yesterday so they could determine if the tumor had shrunk sufficiently to allow regular urination. They were hopeful that the tumor had responded enough so they could pull the catheter out, allowing Hope to have a more comfortable life and to decrease her chances of infection. We had seen enough evidence of shrinkage to also hope that this would be the case, but we never expected the news that our oncologist would bring us that evening.

The first news is that the tumor has shrunk enough to allow normal bladder function. During a chaotic diaper change, I ended up with urine all over me and wept at the sight. She has been urinating regularly for the first time in weeks. This alone is a miracle. She has also been sitting on her bottom more often, which is something she had completely given up on. This, to me, is another miracle that has filled me to the brim. But we were overwhelmed with the additional news that the tumor has responded so readily to the first round of chemo that it has decreased 70% from its original size. The chemical count in her bloodstream emitted from cancer cells has plummeted from 38,000 to a mere 1,300. I don't think anything could have prepared us for such results. The doctor was all smiles. This, he said, is the best anyone could ever hope for from only one round of chemo. We see it as nothing short of an incredible miracle. 
Hope can now fight and give us her classic "I'm done with you" look all she wants. We are joyful. All our efforts are making a difference. God is with her, allowing miracles to pave the way for her life on this earth. The road is still long. The plan is to have Hope undergo four rounds of chemotherapy before surgery in early July. We have side-effects to manage and difficult conversations to have with doctors and surgeons about how what we do now could possibly affect her future. We still do not know the end of this journey, but we rejoice this day that initial efforts have not been in vain and that this girl has a chance to come out on top. Regardless of the ultimate outcome of this war, we thank God for the battles that He has helped us fight and win. We thank God for his miracles, and we thank God for Hope! 
In the words of my sister, hold on to your little ones a little tighter and enjoy the moments--good, bad, messy, funny, heartbreaking, breathtaking and everything in between. Life is sure to happen and can change so quickly. 


  1. Praying for this sweet girl.

  2. I have never commented, but have been reading for years. I teach children who are Deaf and hard of hearing. Some of them have hearing loss due to chemo. There are several options for Hope, depending on the degree of her hearing loss. If it progresses to the severe/profound range, she can have a normal cochlear implant. Children who have already aquired language do very very well with cochlear implants. We always tell parents that a cochlear implant is not like turning on hearing for a child who is born deaf. However, if a child already has aquired spoken language, we see results immediately. The technology is improving rapidly. They now have hybrid cochlear implants for high frequency hearing loss (often caused by chemo) that allow the patient to use their residual low frequency hearing and use the implant for the high sounds. The cochlear implant takes the place of the hair follicles that fall out due to chemo. They also have hearing aids that will transpose high frequency sounds so that they're within the low frequency range.

    The family may be able to apply for medicaid through a waiver (as hearing loss is considered a disability) and all hearing aids will be paid for every 3 years until she turns 21. I believe cochlear implants are also covered in some situations and if they choose a hospital that accepts medicaid. They may want to talk to a nurse advocate to be sure they're applying for the correct medicaid.

    Obviously, this is the least of Hope's family's worries, but I wanted to reassure them that there are lots of options for Hope. All of my hearing impaired students that lost their hearing due to chemo function EXTREMELY well. If you look at their audiogram, you'd think that they wouldn't be able to talk. One of my students is now 21, bilingual, and uses hearing aids to compensate. He has been fighting brain tumors since 3rd grade. I will be thinking of them and sending positive thoughts for Hope to kick this cancer quickly. She sounds like an amazing little girl.

  3. i will be thinking of Hope and her family.

  4. Thanks Katy. Every so often I need to be reminded of what is truly important. Hope and her family will be in our prayers too.


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