A Walk Through The Waiting

Tuesday Evening: The Night Before

I sit on the floor of her room watching as she packs a tiny suitcase for her doll. Filled with tiny pajamas, a tiny blanket and a tiny bear it looks nothing more than a chore any other little girl would complete on the eve of a trip. Until she finds the tiny oxygen mask and packs it too. This is different, I think. This is what makes her different. 

Carefully she then undresses her doll replacing the pink shiny dress with a hospital gown. She begins to talk the way she always does before these things. She tells me her new doll is nervous about having her first set of scans. She has told her all about what to expect but still the doll is a bit afraid so Izzy goes on with more detail of what she can expect. 

For many years Izzy has managed her own fears and confusion by role playing with her dolls. The dolls have changed from time to time, even once it was her favorite stuffed elephant, but the story is always the same: the make believe friend is nervous about having a scan to look for cancer in her body. The scans make the doll nervous like Izzy once was. The equipment, the noises, the needles and masks. 

If asked if she, too, is afraid Izzy will always say, “No, I’m not afraid but I’m a mom. I have to take care of my daughter and let her know everything will be okay.” Isn’t that what mothers do, after all? We take care of our children – telling them that everything will be okay – even when we, ourselves, carry the very same fear. 

Wednesday: Scan #1

We sit quietly in the prep room while nurses and assistants come in to take vitals and write up notes. Izzy takes her doll from the stroller she has been pushing and climbs into the chair, holding her tightly in her arms. She whispers to her softly and I cannot hear her quiet words. 

A new nurse comes into our room. She works with the anesthesiologist and needs to go through Izzy’s history. She needs to confirm the things that have been in her chart for years. Things I will confirm again tomorrow. She begins to call off every procedure, every diagnosis, every complication Izzy has ever had like they are just words on a list. These words carry no weight for her yet they pull me down further and further as she calls them off. 

“Adrenalectomy, tumor resection, bone marrow transplant,” I nod. “Recovered pulmonary hypertension, esophageal strictures, hearing loss,” I nod again, saying only the word: correct. “History of multiple chemotherapies, radiation, a g tube placement, a g-j tube placement, multiple central line placements, a port,” I sigh this time as I nod, listening to the list continue. I tune out the words she reads finding too much pain in each of them. I grow bitter wanting to lash out at her: how many ‘words’ are on your own daughter’s list. It becomes too much so I fixate on the cartoon playing on the screen. She continues, “high blood pressure, intestinal obstruction, nightly feeds,”  I continue to agree. The cartoon is an older episode, one that has played over and over again during our years in this very hospital. This cartoon, I’m thinking, is one of the most constant things in our life. This cartoon, this complete fabrication of reality, is more constant than my daughter’s health has ever been. Izzy is kicking me now, noticing I have drifted off so I adjust myself and tune back in to the nurse.

“She needs to receive a dose of Dex before she wakes,” I say. “Sometimes they will give fentanyl too, right after the propofol drip finishes. Either is fine but she needs one or the other.” The nurse scrolls back through the notes in Izzy’s chart to confirm my request and agrees that I have told her what is needed. “And I’d like her to have an extra bolus of fluids. 500 please,” she says okay and continues typing.

Soon we walk back to a different room where they are waiting for her around the bed she climbs into. She covers herself in her purple blanket, left arm wrapped around her elephant. Then she pulls the doll upon her chest laying her in an identical position – covers her also in a purple blanket and places a stuffed bear under her left arm. With her right hand, Izzy places the mask over the doll’s face and then tells the team who has been most patiently waiting that she is ready. The anesthesiologist places a mask, not much bigger than the dolls, over Izzy’s face and tells her to breath slowly. She continues to hold the mask tightly over the doll’s face in unison with the anesthesiologist.  The smallest body in the room she is the strongest force, completely in control of all that surrounds her.

Suddenly her eyes move from the doll up to me and she panics letting go of everything and reaching for me. She is half awake, half asleep the drug beginning to take over. I take her hands and put them back exactly where they were before. I place one hand over her hand that holds the doll mask and my other over her hand that holds the elephant. I squeeze them firmly and warmly, assuring her with my eyes that I am there. I tell her, as mothers do, that everything will be okay.

Within seconds she falls asleep and I am asked to leave the room. I kiss her forehead and walk away heading down the long, white corridor to wait. 

Later that night I lay in a hotel bed wondering still what the test results will show. The doctor has emailed to say he is out sick and we would talk tomorrow after Izzy’s second scan. I think about the waiting and how I hate it. I think about how even though the waiting holds so much fear it holds so much hope as well. I think that maybe tomorrow I will wish I could come back to this place of hope. Think maybe this night will seem peaceful compared to what I feel. 

Then I think back to the thing Izzy said to me a few weeks back, the thing that has been in and out of my mind all day. I think back and I wonder what I will think about it once I get the results tomorrow. Its this thing she said that I can’t stop thinking about. This heartbreaking, beautiful, matter-of-fact kind of thing. This is what the thing was…

It was just a week or two ago and I was lying down with her before bed talking about the things of our day as we always do. Somehow she started on the subject of school and went on to tell me they were studying countries in her third grade class. She was studying Israel, her namesake. I asked her what she was learning about it and she began to describe to me what a beautiful place it was. A valuable place that bad people were always trying to destroy. I began to remind her why we had given her the name Israelle – because the people of Israel were God’s chosen people. What a beautiful thing to be – His Chosen One. 

She thought about it for a while and acted as though she had never heard that before even though she’s been told it many, many times. The room grew quiet but before long she broke the silence with her revelation, “Mama, I think I know why I have cancer.” My stomach dropped and I wished I could undo our conversation. I hesitated, “Why’s that baby?”

“Because my name is Israelle,” She declared, her words making the darkness of her room even darker. My heart ached and before I could begin to think I desperately blurted out, “Why would you ever say that?” 

“Well it’s just like the country, with people always trying to destroy it. But God saved the country … and it’s kinda like that for me you know, because I’m a survivor.” 

Thursday: Scan Day #2

She is back in the scanner sound asleep now as I sit in the designated waiting room for radiology patients. My heart is pounding and I feel my stomach creep and crawl within. I no longer feel the hope of not knowing, I feel the fear. It is surrounding me, over taking me and I want to either vomit or pass out. I know that someone back there is looking in her body at this very moment. Someone knows the thing I want desperately to know. I picture them all standing around her sleeping body talking about what they brought for lunch or what they watched on tv. I wonder where they put her doll. Wonder if they set her aside with dignity or cast her carelessly into a chair or table. I put in my headphones, close my eyes and wait. 

By the time we have picked her up in recovery and taken her to the oncology clinic it is all I can do to not cry. To not scream. We sit in silence in our room for an astounding thirty-nine minutes before the doctor opens the door. We are handed papers, conversation begins and finally, twenty-four hours since the first scan ended I finally know. She is still fine. The scans both revealed no change. She is stable. She is in remission. We will scan again in the middle of April.

This kind of waiting has become debilitating for me. My entire body is almost numb now. I do not feel joy but I choose it. I do not feel thankful but I choose it. I do not feel anything but I choose to not let that steal this moment. In this moment I am reminded of the ongoing attempted destruction of Israel and I hear my daughter’s words boldly in my mind: God saved the country…and it’s kinda like that for me, you know because I’m a survivor. 

Blessings on you today and LIFE for Izzy. 

Re-Birthday

It was early January, 2012 and we sat in her hospital room in the deepest level of isolation she had ever been in. Only one adult was allowed in the room with her around the clock and no one under the age of eighteen. We were allowed one visitor at a time but with our distance from home there were never many more than that anyway. She had been given high doses of chemotherapy beginning on Day -7 to kill nearly ever cell in her body. Unlike regular chemotherapy which left some cells behind, this killed everything. In the weeks to come she would shed her skin, her fingernails and any eye lashes she had left. But for today, today was Day Zero and she was finally getting her stem cell transplant. On the Transplant Floor this day was celebrated as her Cell Day. They hung a birthday sign above her door and the Child Life Team came in isolation gowns to sing ‘Happy Cell Day’ (to the theme of ‘Happy Birthday’ of course, for today was a day of re-birth). A day to start over in hopes for a cure.

Over the next two months I watched as what I knew of suffering was redefined. Most days she lay still in bed, fixated on the TV but not really watching. The morphine pump was running almost constantly so she didn’t feel the full magnitude of her pain. She was too weak to stand, to even sit, to even smile. Smiling required moving her mouth which was filled with bleeding sores that went all the way down her esophagus. This made the constant vomiting horrendously painful and she fought it every time. She didn’t want to throw up because she knew the acid from her stomach would burn the sores as it worked its way up her throat and out her mouth.

Those were the days when her hearing really started to go. We didn’t have hearing aids yet so she couldn’t hear my goodnight whispers in her ear anymore. Couldn’t hear the morphine pump beeping. Couldn’t hear the tv very well, though I’m not sure she was really watching anyway. She just stared into it day after day, the whites of her eyes growing grey as her skin continued to flake off.

A few weeks in she hit rock bottom and nearly went into kidney failure after a complication from the chemotherapy took over. For days we waited to see if they could get her through it. We delayed the radiation she was scheduled for waiting to see what would happen. The radiation would hit right next to the left kidney and we knew that if we began before her kidneys recovered we could send her into complete failure.

Those were the darkest days of my life, that portion of treatment where she was the closest to death I have ever seen her. But I knew that going through it was her only chance for a cure. That’s all it was too – a chance. A chance for a better life, a chance to overcome the disease that was trying to take her life, a chance that – as we know now – didn’t work.

Today is the four year anniversary of that stem cell transplant. Today, January 9th, is her Cell Day or as I like to call it, her re-birthday. And while I am so unfathomably grateful that she is still alive four years later, I am still so unfathomably terrified of what the future holds as well.

She had her last dose of chemotherapy on December 23rd and in two weeks we will go for scans to see what is happening inside that tiny, strong little body of hers. I told her last night that our nurse wouldn’t be coming to the house today like she does every Monday. Told her that we were taking a short break from getting labs all the time. She smiled and raised her hands into the air. “YES,” she said nearly screaming. “I’m so excited Mama. So excited that no one will hurt me anymore.” My heart broke as it often does when she says things like that. When she speaks about the injustice she has lived.

Izzy collected beads during her 18 month inpatient treatment protocol. She earned one for different procedures, different horrors she endured. This one here was given to her for her stem cell transplant. Like the others, I will cherish it always.

 

¬†Writing has always been my outlet. The way I feel, the way I grieve. But as the months and years have passed I find I have less and less to say. For a season I wanted to reconcile everything she had gone through into some kind of sense in my brain. But I finally accepted that some things just can’t be reconciled. Some things will never make sense, will never be fair. So this week when she talked to me about the four kids she wants to have someday, two boys and two girls, I didn’t try to stop myself from feeling the pain. The pain of knowing all the things that she doesn’t know. All the things that have been spoken over her. Things like: she won’t live long or that she will never be able to have children even if by some miracle she does. I don’t want to try to make myself feel okay about any of that because I’m not.

But I also don’t want to miss a second of her life because I’m too consumed by pain or fear. So if there is ever a moment to celebrate her life I will take full advantage of it. Full advantage of celebrating every milestone – like a 4th re-birthday. So I’ll buy a cake, I’ll wrap a gift and after dinner tonight we will have a 4th re-birthday party. Through the pain and through the fear we will sing and we will celebrate. But not because I’ve reconciled it into anything beautiful – quite the contrary. We will sing and we will celebrate because I can’t turn it into anything beautiful. We will sing and we will celebrate because the whole thing is an unholy mess but she is still alive in the midst of it. And that is reason enough.

Blessings on you today and LIFE for Izzy.