Thursday, December 28, 2017


I feel like I've been slowly recovering from amnesia. The other day Grace asked for a napkin, but I heard her say "nah-kin." That was how she said it as a toddler. I felt like I was waking up from a happy dream, the type where you can almost, but not quite remember what you had dreamt.

I joked a few times that living that long at the hospital was a form of sensory-deprivation-torture. In BMT isolation we couldn't have pillows or sheets from home, they were the thin hospital-ply until she was allowed to go to the "regular" cancer ward.

We weren't allowed to have many stuffed toys or even many toys at all, unless they could be easily wiped down every few days. She couldn't have fresh flowers or latex balloons. I did get her a giant mylar Unicorn balloon, but I think she was depressed. She didn't care. Nor did she care about the butterfly decals I brought to decorate her room with.

We couldn't have scents, like food, because it made her vomit. Some days we listened to music as she colored, but often she felt so sick that we didn't. I got used to the loss of sensory that connects us to our memories and to ourselves.

Yesterday I made salmon and sweet potatoes and again that fleeting, dream-like feeling covered me. I took me a while to realize I was remembering a happy time when I cooked that meal before. I hadn't realized it had been so long since I had that feeling of contentment.  I had forgotten what a good memory felt like, but I hadn't noticed that I had forgotten.

Really, I've been depressed. It seems opposite of how it should be, and to be honest, I think knowing that makes me more depressed. I should be so happy Grace is home again. And I am. But I'm "should" even more. Christmas was the worst. I literally cried all day, hardly able to get out of bed. Knowing that I was depressed on Christmas made me more depressed. It was like a crushing weight that I couldn't escape no matter how hard I tried.

It wasn't until the next day when I sent out an S.O.S. text to several friends did the weight lift. God has shown me three times recently that I must reach out for help and stop pretending to be self sufficient. All three times I tried my best to solve my own problems, just like I've always done, but I've been learning in CR that I need support and apparently God is not going to allow me to survive until I learn that lesson. All three times the crushing weight of despair was immediately lifted, or the problem immediately resolved, when I gave in and texted my friends for help. Immediately as in practically before I finished hitting "send."

Looking back, and with their input and wisdom, I can see a little more rationally as to why I've been so depressed. Grace's brother was SO excited to see her and per their old play habits, he was bouncing and singing and being silly. She wanted to lay on the couch and she did NOT want to be touched. So they fought. All day. Every day. Feelings were hurt and I had two lonely kids who couldn't be in the same room together.

(Feel free to's insightful to cancer life but a little long and a tad whiny) 

 Since she's been discharged two weeks ago, we've been back to CHLA clinic four times. Five if you count tomorrow. She has to go twice a week and each visit takes about six to eight hours with driving.

She's always angry to be there and because she's on steroids, she's always hungry. Somehow, no matter how hard I try, I never seem to pack enough food for these trips. So she's hungry and angry.

Also it feels much more critical, and is, since she's out of BMT compared to her other neutropenic periods. So I've called the doctors and nurses twelve out of the last fourteen days with fears about  her pain and rashes. Luckily they're amazingly helpful, but it's always scary for me to have to call, and a lot of responsibility to decide to call. I worry constantly that I might miss some subtle symptom that could put her life in danger.

I have to be a nurse and pharmacist at home, though I have no formal training besides our favorite BMT nurse who helped me get ready before we were discharged. Every morning I spend five minutes flushing Grace's central line with saline and heparin and change the cover and caps on Sundays. I make sure her four liquid medicines, nine types of pills, and two creams are correctly dosed and administered six times a day, even though the doses change constantly. It can be very frightening for me because I know her survival is based on me doing a good job.

Grace's cancer is gone, and we hate cancer because it can kill her, but now she has no immune system, even less than when she had "regular" cancer neutropenia. And not having an immune system can not only kill her, but kill her quickly. Not having an immune system requires all kinds of work. We have to keep the house immaculate. All germs and dust and pollen must destroyed. We can't have many visitors, and even less children visitors. She wasn't allowed to pet her cat until recently, and even then she has to wash her hands after, no kisses. I have to keep the cat clean, her room clean, her sheets clean, her towels clean, her toothbrush addition to caring for a family of four again, instead of two.

She can't drink tap water, she's only allowed bottled. She can't go to restaurants or even eat restaurant food. She can't be in the sun at all, can't swim, can't go to karate, can't go to school, can't go to the park, can't go to other people's houses or any public places. She must take all her medicine, must let me cover her with lotion, must let me take her temperature, must show me each time she poops. As you can imagine, her life is out of her control and she blames me for most of it. I get it, she's seven. All the same it's tiring.

And emotionally this week was crushing. I had three friends whose children either relapsed again, or relapse is suspected, and each of those children have a critically low chance of survival. These kids and their moms are like family to me. And to top it off, I was trying to save all our neighbors and their children from cancer caused by the SSFL.

(Long part finished, if you care to read on)

So I slowly wore myself down and out without really realizing it. When you live inpatient for that long, it starts to almost feel normal. Waking up two to three times a night seemed like a miracle compared to living inpatient, so I didn't realize how tired I was, only that I wasn't as tired as before. I didn't realize how sad I was, only that I wasn't as sad as I was before. I didn't realize how numb I was, only that I felt more alive than before.

Slowly I've been waking out of my amnesia to find both good and bad are my reality, both good and bad are my memories, and sometimes I can't tell the good from the bad. I'm rejoicing at how much Grace has recovered but I can't imagine the future. I literally can't think past an hour from now. Everytime I try to imagine next week, or next month, or even next year, it feels like falling into amnesia in reverse. I can only see shadows.

Still I know I am improving because I actually want to heal. Actually I don't really. It's frightening to imagine a life outside this one. But at least I'm willing to walk that direction, into the light and wholeness of the healing only God can bring. I am willing to trust Him to heal me in a way that I'll still recognize myself.

In the meantime, treat me like my eighty-something year-old neighbor who had amnesia. Be patient with me if I don't make any sense. And if you find me in your home sorting your mail, or walking down the street with only my panties on, just kindly lead me home with sympathetic words and wait until my door is closed before laughing.

...I realized late last night that our neighbor had dementia, not amnesia, but I was too tired to care that I got it wrong.


  1. Melissa,
    Your description of home life after BMT strongly resonates with me. If I can be honest, I was terrified of taking my kiddo home. It didn't feel safe, as in I was afraid our carpet was going to kill her. I was afraid of her sharing a bathroom with her siblings.The nurses though I was kidding when I kept asking them if I could take one of them home. I also would have taken someone from the kitchen and a beloved custodian who kept the hospital clean for us. The weight of responsibility was unbearable sometimes. Then I would be ashamed of myself, thinking of friends who would give anything to be in our situation and have another chance to serve their precious babies in the role I was in. Some days felt like I was drowning in a pity party of "Look at everything all my responsibilities!" The truth was I was scared of screwing it all up, either with missing her immunosuppresant by twenty minutes, not cooking her food to the correct temperature, or checking the bathroom to make sure it was clean.
    All this to say, "Me too."
    Jesus sees you, Melissa. He is beholding the pleasure of you, His Beloved daughter. His words whisper, "I know. I see you. I'm here."

  2. I’m weeping as I read this. I am reminded of a few things that Jesus said:
    In this world there “will” be trouble &
    Do not worry about tomorrow
    You fell back into autopilot/self preservation for a while - but you recognized it and reached out. Your village is here, we stand in the gap with you, praying.
    Keep looking up. Keep sharing and asking for help.
    Love you

  3. I am weeping before the throne. I know God will help you and I pray that this time of suffering will soon be over and you can all be a family again. Thanks for sharing your struggle so we know how to pray! I had no idea the pain and hardships you are going through!

  4. Melissa, I can't pretend to know what your life feels like---I only know my own, and some days, heaven-now sounds more appealing. I recently read the story of Elijah from I Kings 19, exhausted and wanting to die beneath a juniper tree. God's words to him were "the journey is too great for thee, and I will refresh thee." The first part, I have no trouble believing, and I am grateful that God has mercy and acknowledges this state of being, this bruised reed and smoldering wick. The second part--"I will refresh thee"--is harder....a promise that I hope to believe will come to pass. Sometimes we need others to believe for us when we can't. I'm praying that today, for you, for some small moments of refreshment to remind you of the larger work God is doing in you and your family's life. Much love :)--Regina

  5. Dear Melissa,
    I can’t even imagine. I have never met you or Grace in person, but I have followed your journey since even before she was first diagnosed. I’m friends with your parents, and they asked me for prayers when she first began undergoing tests. It has been such a long roller coaster of a journey, and I can’t imagine when the end will be insight. My prayers continue daily. I imagine there are a lot of people out here like me — friends you’ve never met whose hearts you have opened and touched profoundly.

    May tomorrow...and the New Year ahead, be filled with health, breath, space, and hope.


    Michelle Wortner

  6. Melissa,
    Happy New Year! Yes, Happy! 😊 Isn’t He so wonderful to sustain and guide at all times in our life?? He surely provides at every moment in our lives, He knows the needs, the wants, the joys, the sorrows. I encourage you to continue pressing into Him for your every ever present needs. He does not fail. I pray that the Holy Spirit continues to wash over you His discernment, His Peace, His Guidance at just the right moment as He always just the right moment as you care for your family. To You, God, be all the glory!! He is good in the good and yet remains good in the bad for He does not change. Thankfully and mercifully our circumstances do not dictate who He is. He is Holy and worthy. He is our rock and provider. He is the Healer of all that we are. He is the Sustainer of all that we are. May the Lord bless You and keep you. May His face turn toward you and be gracious to you and give you Shalom (Peace.). Numbers 6:24. We continue to lift you in prayer and think of you often.

    Merry Christmas because it really is despite our circumstances because He has gifted us with Himself. Thank you, Jesus! So thankful He has come to restore us and give Hope. The Hope that does not fail. And that Hope sustains us at all times, in any circumstance, for the completion of all time until we are reunited with Him in Glory! He tenderly cares and provides as we walk through this life. So thankful for this gift, it is what I cling to for my everything. Without it, I am but ash on the ground.

    And lastly, Happy New Year. Many blessings to you, Melissa. Continue seeking Him to provide for your every moment. And ask Him for wisdom in asking for help. Our circumstances and asking for help are overwhelming for us and yet He orchestrates meeting needs so beautifully as only He can! These are gifts He loves to liberally lavish upon the giver and receiver. It’s breathtaking and indescribable to witness His Power move. To You, God, be all the Glory, forever.
    In His Grip,