Of course a soccer game only has one halftime. While I know it is in our culture to want to find the end and resolve a situation for ourselves or for others so that we may move on, this particular battle with cancer, like it or not, will see us seek out and go through this necessary halftime ritual many more times for an indefinite period of time. No, that is not a call for sympathy. With my wife as my rock, we get stronger every single day. Good thing I love listening to (and sometimes giving) a few halftime speeches. There can never be too many cliches to describe the incredible strength drawn from the brief opportunity to re charge.
Once Ellie turned a corner the first week of February, we have found ourselves celebrating prayers being answered and laughing as much as possible. Her blood counts had fallen just at the end of that particular week and so the expected start of the second half of DI was delayed so her body could recover. We've had nearly two weeks of our happy, joyful, sweetly innocent little girl dancing around the room in front of us. It has been a blessing. Polly has been able to go to work a bit and she and I got a night out alone for our 5th wedding anniversary last weekend. We reminisced a bit at dinner that night about the evening we spent 6 years ago to the day for what we called our "-1" anniversary (exactly one year before the wedding) at the Bone Fish Grill in Cary, North Carolina. I had a bottle of Cab from St Supery (my favorite winery in Napa) that was 10+ years old and I had been waiting for THE special occasion to open it. I kept explaining to the waiter the significance of the bottle and how I had sat and looked at it gather dust at home for years so tempted to open it. I'm sure he was slightly annoyed after a while, as I think I toasted in his direction every time he walked by. He heard about every last drop and even somewhat kindly yet slightly sarcastically asked if he could put the empty bottle in a TO-GO bag so I could take it home. Life was a little simpler then. As I was raving, I remember thinking about how I wish that meal could have taken 8 hours like one of these crazy European dinners my friend Mike tells me about. It is a moment forever frozen in time from what seems now another lifetime ago. The ability to laugh with my daughter is something I will NEVER take for granted and just gets more incredible with age. She deserves to laugh everyday from here on.
Ellie qualified for the second half of DI to start just yesterday. Her ANC had risen from 550 up into the 1300's in 4 days time (Awesome) and so her first day of chemo for the remaining 4+ weeks was today. Polly took her into LPCH at 7:30am for a Lumbar Puncture procedure which as you know requires about an hour of general anesthesia. As she begins to recover they immediately hook her up to receive fluids intravenously for her pre-hydration. The extra fluids are required when you get the Cyclophosphomide chemo drug. Once pre hydration is done, the drug is pushed into her port over about 30 minutes (along with an injection of a second drug called Cytarabine) and then she must have 4 hours of post-hydration before getting discharged. During the LP, she also received a temporary Sub-Q injection mini port, if you will, so that Polly and I can give her three additional shots of the Cytarabine at home this weekend. We did these during Consolidation about 5 months ago, so should be old hat for us this time around. They are very painful to go in, but Ellie forgets about them almost immediately after being done. We will repeat the LP procedure and Cytarabine shots next Friday as well minus the Cyclophophomide and long hours of hydration. With halftime come and gone, the 2nd half of DI is now here and our final month of frontline treatment is now underway.
With these last two weeks being so great, it is so easy as I have said in the past to get a little carried away and have some of our worries drift a bit further away than normal. I get a little nervous now when those worries slip too far away. A week from now, two weeks from now, a month from now....things can always change into an unexpected direction. Not that I have had much control with any of this, I just seem to operate on a wavelength that demands I stay diligent with anticipating problems before they occur where possible and absolutely before they become major issues. While I make ill fated attempts to gain control of something that's really not mine to possess in the first place, I guess what I am really trying to do is never again be so blindsided like I was last June. It is self preservation for Ellie's sake so that she feels as little of this as possible. The result are feelings that come up sometimes and overwhelm because the worry is too much.
I feel that way especially when we lose a fighting member of our community. I haven't met most of these kids in person, but there is a connection that brings about a common sorrow if one ascends to heaven before we're ready to let go. I follow many stories of families who like ours are in similar situations with childhood cancer. "Strength in numbers" is the philosophy that drives the willingness for me to read on whenever I can. Whatever we can offer other moms and dads in our situation, I want to do it. Sometimes its just a simple prayer, but it is something that I CAN do. I was alone in my car when I found out Ellie had Leukemia while Polly was by herself with Ellie at Urgent Care. Later that night we were in a foreign hospital room with beeping machines and a steady flow of nurse after nurse. There was confusion and disbelief. So, Polly peeks around the curtain and meets Natalie and her 6 month old there overnight for a routine round of chemo. She offered some words of support and our first parent to parent connection was made. We weren't alone anymore. In a way, it was like our first halftime check to regroup on this journey and when we went back out to fight the next day, we were along side twice the number of friends from the day before. I am feeling heartbroken tonight for the families of Paul and Daniel who both passed this week. So, tonight I want to offer a prayer asking for peace. With their physical pain now gone, Mom & Dad deserve the power of God's healing touch.
We also ask that you pray for Natalie's beautiful daughter Lily who, like Ellie, has gone through some tough times in the last month. No day with cancer is ever the same and as so many prayers were answered with Ellie two weeks ago, Polly and I want every bit of the exact same uplifting strength to go Lily's way. May she continue to grow and thrive....and fight alongside Ellie so we can all come out of this whole again one day together.
As we push out through the lockeroom doors during every game to get back to the field, I am filled with pride as to how my players handle themselves with class in a variety of different situations. It is a culmination of how they were raised and the incredible work their parents have done as well as the commonality they have all bought into and decided to play together under the same name. We're far from perfect with our performances and even the best re-charge possible we may get at a particular halftime never 100% guarantees the result we want. But if we keep the people we love close together and we move in a productive direction where everyone involved feels they have an invested part, the power and ability to accomplish the goals set in front of us is enormous. With that kind of support around us everyday, you bet your ass I am excited about the future. Ellie has been through so much and we have had the last two weeks to count our blessings once again before getting back to the task at hand not to mention the still constant messages of support coming to us everyday in person, through the mail, and in messages through prayer. It may take years, but our resolve to beat this once and for all remains in front of us with great clarity. I have this vision of her walking into Kindergarten a healthy and happy 5 year old who knows nothing else other than anything is possible. With that, I am ready to get back to it once again.
Clear Eyes, Full Hearts, CAN'T LOSE
~ Coach Taylor ("Friday Night Lights")
Sending Ellie and your community's brave little friends and their families my good thoughts and prayers.
ReplyDelete