Wednesday, May 6, 2015

Disjointed Complaints About Cancer

While preparing to leave Seattle, my friend, a fellow cancer mom, told me that going home was one of the harder parts of the journey. What?! How could that be? Home was the goal, the symbol that our lives could begin anew-a fresh slate. Going home was an indication that all is well, that the job is done, that there is nothing more they can do for her because she is in remission. But because we have been blindsided by cancer before, it is hard not to look over our shoulders waiting for the awful word indicating our fight is not over.

And so it is with many of the families that are fighting cancer. A day might start off normal and end in such wretched news. It is so jarring how a day can begin with normal life and end with terrible tragedy, all in the course of 24 hours. I have received news that a fair share of families have had their child relapse. There are no words to relay the desperation and hopelessness of hearing that the cancer will not stay away. It is exhausting to have to continually stay guarded even when the battle is supposedly over. But one thing we have learned from this tug of war between life and death is that every day is an opportunity to see God's goodness. I saw it today in Gwen's laughter, in Ava's excitement to play, in Jude's sweet smile, in Mike's love for me and the girls, in my mom's unfailing strength to serve this family. 

Yet it is still a difficult journey and this has been a hard month with Ava's sudden hospitalization a few weeks ago. She had been complaining of some chest pain when breathing. Mike wanted to talk to the doctors but I brushed it off. Chest pain? How would a child even know what chest pain was? Thankfully Mike reached out to our doctor in Seattle who instructed us to have Ava seen right away. The next day, as we got ready to go to clinic, Ava began to pack her bag just in case she would be admitted. I laughed at the idea. "You are not going to be admitted! You are fine, Ava!" I said. She looked absolutely perfect. When seen in clinic, the doctors had Ava slated to go home on a Z-pack for a possible walking pneumonia. Nobody thought it was anything serious. In fact, a pulse ox was not even ordered for her but one of the nurses thought it wouldn't hurt to get a reading. The flashing 88 shocked us. We waited a few moments because surely the machine was just having trouble reading her. A misread could happen at times and seeing that Ava looked completely comfortable, we had no reason to believe that the machine was reading her oxygen level correctly. But after a few minutes, it became clear that her O2 sats weren't budging from the 80's.

Ava was admitted that hour and a nasal cannula was placed to give her some supportive oxygen in order to bump her numbers back up to the 90's. That was Monday. By Wednesday, she was in the PICU with clear respiratory distress. The doctors couldn't tell us much except that they were very concerned at the rate of her decline, and that her life was in very real danger. Since all the tests were coming up negative for viral, fungal, and bacterial causes, they did not know how to most effectively treat her. By this time, she was on a respirator with 100% oxygen support and we were told that her future was bleak and they began to talk about IPS (Idiopathic Pneumonia Syndrome) a fancy name for lung failure due to an unknown cause. 

How could the week have started out so promising and have progressed to this state of desperation so quickly? We had just gotten Pippin back and the girls were so happy. I had just been the speaker at the Be The Match 5K talking about Ava's successful transplant. My brother had just departed after a weekend of celebrating Ava's return to Chicago. We had just begun to return to a normal life. 

As Mike and I sat huddled with Ava on her bed in the PICU, we found ourselves thrust back into the life we were so desperate to leave behind. With his head on my knees, I saw Mike's shoulders begin to shake and I felt the heat from his tears soak into the blanket resting on our laps. We were back in our nightmare, tossing and turning hoping to wake up to a better reality. And then Friday came and Ava began to climb out and out from the depths of her sudden illness. By Saturday, she was talking again and asking for food. She was taken off the BiPap machine and placed back on a nasal cannula and began to take sips of water for the first time in days. 

While Ava was walking the halls a few days later, we bumped into the doctor that gave us the grim prognosis just a few days back. "So you're saying that you don't know what it was and you also don't know how she got better so quickly?" I asked. "That's a fair assessment," she answered. But we would need to wait to see if lung GVHD or IPS was the culprit. Only time would tell if her lungs would slowly deteriorate, leading to respiratory failure in the future...What kind of sick, twisted game is this? There is no winner. You lose something no matter what. How could the same transplant that saved her life end up taking it later on? 

By Tuesday, we were discharged and sent home to try again at building a normal life from the pieces of what used to be. But to tell you the truth, I'm a paranoid mess. A whimper in the night, a confession of leg pain, a bout of vomiting, any and all of these things send me reeling back to fears of relapse, of failure, of the need to battle again. 

I am standing by as a family that I know prepares to say goodbye to their daughter because they have run out of options. My heart drops and stutters at the agonizing pain they have to endure in living out the last of her days. And though she is not mine, she also is. Because her story could very well be our story tomorrow. We are tightly bound to all the kids that are fighting and losing to cancer because they are our kids. We have done this for a long time and we have seen lots of kids die. We are seasoned enough to know that we are not above death. No one's story is written so that the final chapter can already be read. It is a reminder that my hope must be placed in something more sturdy than this temporal and unstable life. I long with every fiber of my being for Jesus, for heaven, for an end to this broken world and an ushering in of all things new, perfect, and eternal. Maranatha. 

These last several weeks have been hard for Ava. She has been suffering side effects from her anti-fungal medication. The biggest ones are her nausea and change in taste. It's so distressing to have her continue to reject all foods but cry and cry from hunger pains. She has been having trouble moving around and playing due to her lack of energy. She is sleeping a lot more and things have been quiet in the house. Reading about the side effects of these medications, makes me want to vomit. It is unethical to ask parents to inject their kids with poison. The very nature of a parent is to protect and shield her child from danger. But, here we are, asking Ava to trust us as we pump all kinds of toxins into her fragile body. If only my body could be the buffer but, alas, it doesn't work that way. So, instead, my heart gets a beating every time we have to look the other way and choose the lesser of two very evil things: cancer or toxic treatments masquerading behind the innocent title of "medicine." 

Gwen is struggling with severe eczema to her hands and body. The other night she ripped up her hands so badly that there were chunks of skin missing from her fingers and wrists. I quickly depleted our supply of bandaids in order to stop the puss and blood from getting everywhere. 

As for me, I have been fighting to look up when the sheer exhaustion of seeing my babies in pain drags my focus away from the delight and privilege of life. 

Thank you for remembering us and the many families who watch their kids suffer in the wake of cancer. Thank you for praying and also for allowing me to full-out complain into cyberspace (like a brat) when I should be counting my blessings. It's always beneficial for me to see my whiney words on paper so that I can let it go and begin again. 

"Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God."  Psalm 43:5


Patrick Dong said...

What kind of sick, twisted game is this? Esther, I read your words while holding tears.

Steph - the 313 said...

esther, this is the THIRD time I am writing a comment and i hope this time it does not get deleted!!
You can always list your "complaints" here! The older i get, the less I feel like I truly know... thus, the more I hope that my faith and my trust in Him can deepen... I am so sorry for the sorrows and challenges and many many heartaches you all have had to suffer through and continue to press on in the midst of...the Bible says to unceasingly pray, and even though i don't know much about anything, I know that that's pretty much a command.. so we press on, and we continue to pray pray pray.. we love you all so very much. love and hugs from seattle. (no tigers or tornadoes here.. i want to drive to mercer island and give you a hug!)