Back Rubs. A Visit From the Fellas. Today at Duke.

As we go through Childhood Cancer Awareness Month, I am continuing to feature posts written (and posted) back in Sarah’s cancer days.

This was written during the 30-day period that Sarah was at Duke for her transplant.

January 18, 2003

When I walked back into Sarah’s room this morning after going down the hall to the bathroom,  I took one look at her face and knew she was in pain. Her face was pale and pinched and she was breathing in the kind of half-grunt, half-moan way which she does when she’s hurting.

I slipped off my shoes and laid on the bed beside her; enfolding her in my arms, I began to rub her face and the soft skin on her head. It was an amazing transformation–in just about sixty seconds her breathing changed from a painful, unsteady groaning to a quiet and peaceful rhythm.

There is so little I can do for her during this horrific time of her life so to be able to offer that small amount of comfort and see it make a difference made me so very happy.

The day before I had gotten up with her at about 5:00 am when she was once again hurting so badly. (She had a button to push for morphine but it seemed like the pain broke through more often than not.) I tried to encourage her by saying, “Sarah, right now you’re right in the middle of the worst time of your treatment but very soon, things will start to get better.”

She looked at me with pain-filled eyes and said, “Mommy, I think that right now I’m in the middle of the worst time of my whole life.”

It hurt me so much to hear my beloved 6-year old child say those words. It hurt even worse to know that there was so little I could do for her.  After giving it a little thought, I finally asked her to roll over on her side so that I could rub her back. Earlier that day, I had told Sarah about how my mom used to rub my back when I was a little girl and Sarah so loved hearing about that.

We got all settled into her bed and I had only been rubbing her back for a minute or two when all of a sudden she opened her eyes wide and lifted her head off the pillow as though she had just remembered something vitally important. I quickly found out what that something was when she sat straight up, reached her frail, feverish little arm toward me and started to rub my back, obviously thinking about our earlier conversation.

I was moved to the point of tears by Sarah’s willingness to put aside her own pain and sadness to do something so special for me. I leaned forward to kiss her and said, “Thank you so much, Sarah.  You made my heart smile!”

She looked quite pleased with herself and as I returned to rubbing her back, eventually drifted off to sleep with a small, peaceful smile on her face. 

February 2003

(I wrote this post after Sarah had been discharged from Duke; we had to stay near the hospital for at least a month after discharge so she and I rented an apartment within a couple of miles of the hospital.)

Yesterday Sarah was so excited because Steve and Nathan were coming to spend the night. She must have called Steve at least three times to see if they had left yet. When they walked in the door (with Steve carrying a big Valentine balloon), she looked as if she had just been given a million dollars. All night long, she beamed and chattered, thoroughly enjoying the company of her two fellas.

After eating dinner together, we popped some corn and put in “The Lady and The Tramp,” a favorite of Sarah’s. Steve sat in the easy chair while I sat  on the couch with Nathan on one side and Sarah on the other. I had to keep an eye on Sarah’s infusion pumps and lines since I was infusing her medications while we watched the video.

It was such a peaceful experience to snuggle with my family, to laugh with them over silly moments in the video, to get teary-eyed together at the sad parts, to pass the popcorn, to share a smile, to simply be a family again.

After the video was over, Steve took Sarah off to her bedroom, along with the bag that carries her I.V. food and her two infusion pumps. As he was tucking her in,  I went to the kitchen to finish cleaning up.  Nathan walked in and without much preamble quietly asked, “Mom, is there still a chance that Sarah might die?”

He’s a big guy but I still want to be careful about how much information I give him. He deserves to know the truth but he doesn’t need to know everything that Steve and I know. I told him that the doctors say she is doing well,  the transplant worked, and her blood levels are great. I also thought that he was old enough to know that there was a good chance that she could relapse.

I could see him trying to absorb it all–the joy of the evening together, the thankfulness for her current condition, the fear of what may come, all mixed in with the love and protectiveness he feels for her. I didn’t really have any words to make sense of his swirl of thoughts and emotions so I just reached up and gave him a big hug. I had been hugging him frequently all night because, as I kept telling him, I had to make up for lost time. 

The morning after Steve and Nathan left, I drove Sarah to her clinic appointment. Going to those appointments is an interesting experience because I always feel like I’m a meaningless accessory to the whole process. Sarah sits herself down in the chair nearest the doctor and launches enthusiastically into conversation.

On this particular visit she inquired, “Will I have scans and x-rays before my radiation starts? Because if I do, and they don’t show any more cancer, then why do I need radiation? What does the radiation do?  How will it make me feel?”

She had several other medical considerations to bring up and then she said, “By the way, do you know anything about cats?”

Well, the poor doctor was still back in the land of scans and radiation so it took him just a moment to fast-forward his thought process.

Sarah went on to say, “I’m just asking because my friend has a cat whose eye stays half closed and I wondered if you might know what’s wrong with him.”

Well, I can’t blame the doctor for not giving her any advice; his expertise in cats is obviously limited only to CAT scans! 

I’m finishing up this post late on Sunday night. I tucked Sarah in at about 9:15 and went in an hour later to check on her. I have felt pretty stoic and controlled lately, probably just in an effort to be strong for her. But as I stood by her bed and saw the soft, little-girl contours of her face in the hall light, her arms flung every which way, her sleeping hat askew on her sweet, bald head, her ever-present, precious blankie tucked under her chin–I began to feel the tears begin to form. She looks wonderful and healthy right now; I can’t imagine that a day might come when the cancer returns and steals her health and life away.

She’s been through so much in the last nine months—pain, nausea, hair loss, feeding tubes, isolation, days of suffering, nights of fear.

While we’ve all fought a hard battle to get to this point, no one’s fought any harder than she has. As difficult as it’s been for us to watch, how much harder has it been for her to be the one going through it. The fact that she still lights up the room with her smile, cracks jokes, chats with the doctor, gives me hugs, and looks to tomorrow with hope is amazing to me.

There’s no withdrawing from the battle for this girl; she’s going full speed ahead down a shadowy, unmarked path. Although she’s not guaranteed a 21st birthday or even an 8th birthday, she is guaranteed a night of sweet rest in a cozy apartment–loved, cherished, and wept over by a mom who’s setting future fears aside and drinking in the soft, sweet presence of her slumbering child

 P.S.  Just as I was getting ready to hit Publish, I got a text from Steve with this picture.

Guess where it was taken?

On the transplant floor at Duke!  

Steve is at Duke today to be with a church member whose husband is having surgery.  Steve decided to go up to the 5200  transplant unit while he was at the hospital and take a stroll through some memories.  He was thrilled to run into Trish,a nurse who remembers Sarah and who was so happy to hear that Sarah is still doing well.

God bless the nurses and doctors who work with seriously ill children; they are my heroes.