There is little question that I am a child of God.  There is also little question that I am often a rebellious child of God…more of a toddler version of the virtuous being I strive to be.  I ask too many questions, I bristle at delayed gratification and I tend to squirm.  There is nothing in the entire world that makes me more apt to start questioning the good Lord, than being a spectator in the suffering of someone I love.  Serving as witness to the pain Kevin is enduring has the “why” word springing from my mouth before I even realized it has formed on my lips.  Then comes the forced deep breath…the ratcheting up of my big girl panties and willful focus on the bigger picture. 

Kevin had a rough morning with pain and that had me on the verge of a full-scale toddler temper tantrum.  I decided to dig around in the Good Book for some of biblical words of comfort or reassurance or HOPE.  My aimless wanderings led me quite literally to Romans 5:3-5-…We also rejoice in our sufferings, because suffering produces perseverance; perseverance character; and character HOPE. And HOPE does not disappoint us…” I am not suffering. Kevin is suffering.  I am struggling; struggling to hang onto the notion that at the end of his suffering there will be a mountain of hope.  Struggling not to question the cards that he has been dealt.  Struggling not to abandon my faith and resign to the bitterness and heartache that creeps around the edges of my soul. 

Kevin had his first night of being able to sleep last night, which he needed.  Issues with his blood pressure delayed him getting his blood pressure medication, so his pain became pretty intense.  The blood pressure finally auto-corrected and he was able to get some pain medication and some relief.  Many of you know the details of his current status, but for those who do not, here is the nitty gritty:

Starting from the top to bottom: 

1.  He has a new flap in the right side of his upper palate and jaw.  It was made from the muscle and tissue of his thigh (we will get to that soon).  It is swollen and sore and bulky—essentially it is a thigh muscle that over the next several months has to learn to be a mouth/jaw muscle.  They removed three of his teeth, part of his upper jaw bone and a large portion of the roof of his mouth and rebuilt it from the excavated tissue from his thigh.
2. In his right nose-hole he has a nasal trumpet, which is protecting the flap and is exactly what it sounds like—a trumpet shaped device that is crammed in his nose.
3. In his left nose hole, he has a feeding tube stitched in.  He cannot have anything by mouth and he will have to get nutrition from this tube in his nose that leads to his stomach for the next few weeks.
4. There was a nerve that was compromised in the malignant node and had to be taken. His mouth is droopy on one side. He has the cutest crooked smile and it may just be a smirk…it’s hard to tell.
5. The right side of his neck has a variety of things.  The first being a large incision where they stripped the cancerous node and several of his other nodes.  It’s gnarly and has about 17 staples and a drain.  He also has a doppler cord inserted into his neck to monitor blood flow to his new construction.  There is a lot going on in his head/neck.
6. His thigh is more extensive that we had anticipated.  He is cut from stem to stern the entire length of his thigh—and the man has a good bit of length in his thigh.  It also has a drain.
7. He has to remain virtually upright at all times, and he is not to have any rotation of his neck.

So that is the big SUCK of what he has going on and I can attest…it is a lot.  I also can confidentially say that he has, in spite of his suffering, nailed the perseverance and the character referenced above, which only means that HOPE is a foregone conclusion for this remarkable man.  He doesn’t complain or grumble and he treats all the care providers with grace and gratitude…even when the care they have to provide is uncomfortable and often painful. 

Like all strong-willed toddlers, I too require little reminders from God that there is so much to be thankful for in the midst of all this chaos.  A walk down the hallways here at MD Anderson, is a not-so-subtle reminder that there is an army of folks with great character and perseverance marching toward that pile of promised hope.  There is no shortage of warriors here.  Opening up Facebook, I am reminded that there are so many who are on a similar journey.  There is one young child back home who is bravely battling this asshole of a disease and my heart aches for him and it breaks for his parents. The only thing I can imagine more excruciating than watching the man I love battle this beast, would be standing guard over a child doing the same.  The thought is unbearable and I am overjoyed at the outpouring of love and support for this family.  I know what it is like to being on the receiving end of such amazing love and it is nothing short of life-sustaining.

So, this leads me full circle from day that began with worry and angst to one of hope and gratitude.  Mr. Rogers is quoted saying, “All of us, at sometime or other, need help.  Whether we are giving or receiving help, each one of us has something valuable to bring to this world. That is one of the things that connects us as neighbors-in our own way.  Each one of us is a giver and receiver.”  This quote speaks volumes to me.  The most obvious is how amazingly blessed we are to have such damn good neighbors!  We have people from all over the country (and a handful in other countries) praying for Kevin.  This whole experience is like an old-fashioned barn-raising…friends, families, neighbors pouring out love, prayers, money, support of all kinds to make this treatment possible and to also make it bearable.  We are so incredibly humbled to be raising our barn in your neighborhood!  This quote also reminds me that I need to work harder at being a giver.  I don’t want to leave this world as one known for receiving more than giving.  Every text, call, note, prayer, donation… reminds me just how BIG you all love.  It also reminds me that I need to be better. 

There are not words big enough to express our gratitude.  Thank you for walking with us on this journey and reminding us of your constant love.  The road would be a lot longer and rougher without all of you walking beside us.  Roads can be tricky.  It is easy to get lost and turned around and discouraged.  Thank you for keeping us on the path, paving the way with hope, and pointing us in the direction of home. 

OUTTAKES: Just in case you were wondering if we were not finding moments of laughter in joy and ridiculousness:

1. Sophi, Gavin and Riley stayed briefly in the hotel room below ours before Kevin moved to the hospital. Sophi came up to our room to hang out, but boldly entered the unlocked room of our next door neighbor. The gentleman was standing in his kitchenette and she hit him with the door. There was shock. It was awkward.
2. We went to pick Gavin up from the airport and we thought we were where he was waiting. We had him on speaker phone and Riley says, “Gavin, I see you. You are looking directly at me. Walk to your right.” It wasn’t Gavin. The real Gavin was confused.
3. Kevin and I were waiting to see one of his doctors. The nurse called out the name “Free-Derek”, “Free-Derek Washington.” An older black gentleman pipes up and says, “What did you say is the first name? I am Fredrick Washington.” (Kevin and I could not stop laughing and saying A-Aron).
4. Kevin’s is bombarded by doctors coming into the room and asking him to do the same things, “Follow my finger with your eyes. Stick your tongue out and move it side to side. Can you smile for me?” After the same routine several times had played out and he complied like a trained seal, one doctor said, “Can you smile for me?” and he simply said, “NO”.
5. Today I was going to give him a quick sponge bath (he can’t shower yet) and right when I asked, “Are you ready to get cleaned up?” I passed an abundance of gas. He replied, “I think you better clean yourself up.”