"Even to your old age, I will be the same,
And even to your graying years I will bear you.
I will carry you; And I will deliver you"
~ Isaiah 46:4 ~
It is hard to ask for help sometimes. It is even harder to make an appeal for help that may or may not come in the desired time frame we seek. The answer requires patience and a big helping of some blind Faith. The struggle in between represents the reoccurring test where perhaps coming to a conclusion in the present tense is not the ultimate goal. There will just be another test next week. Its been like that ever since I left college....where I naively thought exams would end once my classroom days were behind me. We are pushed to some varying limit every single day in some way shape or form with periods of time where it seems to pile on. And on and on as has been the case for us these past couple months. I find I am forced to take a step back into my thoughts and commit to a self study that examines priorities and my interactions with others. If I am to grasp onto Faith with clear eyes and a full heart waiting for answers far down the road, I need to have earned my way there. The relationships we build and the people we connect and travel with in countless circles will ultimately be the branches of help we reach for in times of need. If I have not done my part in creating each circle or committed to the intent to do so, I'm sure I should not even bother to raise my hand. There is always the worry I have not done enough, but this is where the blind faith pays you back even if a conclusion still hasn't arrived. Polly and I have found in these last two years that often we were being carried long before we ever had to ask.
So, I can't walk. No, I mean I literally cannot walk....going on 6 weeks now. Polly has been keeping up the blog for us as I have been trying to keep my surgically repaired left foot above my head to avoid this completely alarming shade of painful purple it turns at night when it isn't elevated. Some two months ago, I made a very regrettable decision in a soccer game (as a player this time) to challenge for a loose ball with the inside of my foot exposed. I got the ball, the other guy got my foot with his studs and I limped off with the injury. Two weeks after thinking it was a bad bone bruise I went to get an X-ray because though I was walking mostly OK, I couldn't run at all. X-Ray revealed a broken/cracked navicular bone in three places and surgery for a small screw insertion to pull the bone together was scheduled two days later. Long story short, here I am now still non-weight bearing in my 6th week post surgery. I use a loaned knee-walker to get around my classroom (Thank you, Dave) and combo of crutches plus lots of hopping to get around the house. I crawl up stairs on my knees, am unable to carry much of anything, and have been about as useless around the house to help Polly as I can ever remember. Polly is a Saint, to say the least, and about the toughest person I know to handle everything with the grace that she does.
The timing of my foot could not have been worse, coming right in the middle of Ellie's stomach issues. For that, I feel guilty because of the undue stress placed onto Polly with everything that has to be done in our house on a given day/night, especially with the many night time screams, moans, and upset stomach sessions Ellie had been enduring. But then we had that fateful 12 hour day at LPCH almost a month ago roaming between 4 departments seeking answers for what she was struggling with. We criss-crossed the long Stanford Hospital corridor six different times and met every deadline put in front of us with 7 different doctors. It was something out of a movie in parts. Here was my little girl undergoing test after test at a place she thinks of as just another activity in her week (like her swim and gymnastic lessons). She never cried once except to say she was hungry, she never complained we were there too long. She sat face up with a multi-million dollar radioactive isotope detector covering her body inches from her nose without a peep. This is the same girl who has worked her way back from having 95% of her blood filled with cancerous leukemic blasts two years ago followed by the most horrific medicines you could imagine having to inject into a 2 year old...yet she still found her way back to being cancer free and clear now. That day at LPCH was a turning point for this latest mountain we have had to climb and Ellie led the way. She carried us. Answers were found for more questions than we started with and we found a way to survive....like we always do and always will. I think about how much we can possibly still have thrown our way at one time or repeatedly over longer periods despite all that we still face now. But there is this somewhat comforting feeling that exists from seeing Ellie be her stoic self at the hospital every time and knowing that if we ever got to a dire situation, faith through numerous vehicles of "help" has now on multiple occasions shown us the way through.
We want to say a very special thank you to our beloved pre-school community. About a month and a half ago, a train of food started coming to our door every night for a few weeks when finding time to make dinner by the time work was out and to meet Ellie's chemo window was a near impossibility...not to mention my one legged kitchen work just isn't the same as that on two. The twins' amazing teacher was nice enough to lend me her family's spare car which has an automatic transmission so I could still drive myself to work (my car is a stick and without a clutch pushing foot....you get the idea). On hospital days, we have several folks who are willing to take Timmy to school so Polly can get to LPCH and I can make my first class at Serra. Everything takes twice as long on one foot in the morning for me. And most of all, there are so many dear friends who asked about Ellie on a regular basis while she was out of school for the better part of three weeks. The Co-Op environment for a pre-school setting is very unique and now after being in it for a full school year, I'm not sure why you would want to do anything else. It is a wonderful family to be a part of....and one that is willing to carry you without reservation when it is needed the most.
My players and I talk a lot about those moments in games when adversity seems to be rearing its ugly head singing a potentially insurmountable tune and the desire for a leader to come to the forefront and "carry" the team on his back is needed now more than ever. But a true leader on the field who can command respect simply by his performance without words does so by making everyone else around him better. The needed injection of new life to a team can come from an individual aiming to spread to his community or from the community aimed at an individual. In essence, we take turns carrying each other because we will all get a lot further than trying to gut it out without help. The "piling on" is manageable because of the company we keep and common goals we share.
Ellie took her final does of the eurythromiacin last Thursday. This was the antibiotic med that she had to be on to stop the effects of the gastro-paresis. She was taking it for its side effect which is increased stomach motility. As Polly said in an earlier post, within 24 hours of taking it following that marathon day at LPCH, she was instantly better. The worry then became how would she react after she was taken off the med. There was an unknown in this entire equation because no literature exists to suggest how absorption of the chemo meds Methotrexate and Mercaptopurine are affected by having an antibiotic in her stomach at the same time pushing things faster into her gut. Thus, the eurythro was stopped sooner than it might have been for a non cancer patient. She has been off of it now for a few days and all looks great thus far. When the stomach ailment had reached its peak, she went on a chemo hold because her blood counts had crashed. Protocol says you slowly work your way back up the dosage chart while recovering. She is currently at a 75% dose strength with all signs pointing to her moving back to 100% by mid week. She has a lumbar puncture coming up soon which will also begin her second to last three month cycle of chemo. I have to say, I know it isn't ideal for her not to be on 100% chemo for everyday possible of LTM (Long Term Maintenance - final phase of the chemo therapy treatment protocol for A.L.L Leukemia) but I love seeing her blood counts shoot up to almost non suppressed values. Its like her body cannot wait to be whole again. Soon enough. We reach the end of treatment in less than 6 months now, late October this coming fall.
Ellie and Timmy have two weeks of school left, as do I and then it will be summer time (Hooray!). On the horizon is our second annual trip to a little piece of heaven called Camp Okizu. Ellie has mentioned more than once that she will be doing the Zip line again - BY MYSELF DADDY! I also get the green light from the doc to take my first steps again the day before we leave to camp, so it will be a celebratory weekend in more ways than one. Both kids are getting so good at swimming now. Each earned a progress sticker this week for being able to swim the length of the pool while doing 8 unassisted "up-faces" in the water (holding breath, lifting head, breathing, repeat). They jump into the deep end and now seem to be regular fish. I too, in the last four weeks, have traded my now dormant running shoes for a swim suit and towel so I can do something active while recovering. In fact I look forward to it everyday after school now. There is something very relaxing about the water while still getting the heart rate up to a solid cardio level. Really makes me miss the times in high school down in Long Beach where my buddy Lee and I would roam through the waves on several summer evenings and watch the sun go down at the same time. I cannot bring my iphone music and headphones into the pool, so for 45 minutes, it is just the calming sounds of water rushing by alternating with the peaceful silence below the surface. Sometimes there is no better feeling than going home from work exhausted but completely relaxed.
To adequately describe to you how the euphoria of relief feels after getting past a prolonged episode like this spring has brought us...however carrying with it the underlying knowledge that we can be plunged back into it or another dark corridor at a moment's notice is and will forever be impossible to do. Only our fellow childhood cancer parents know what that is like. It creates days on occasion that bring us both to our knees. I know I am never going to be able to fully pay back everyone that has carried us through these tougher times. Instead, the self examination of how earning those branches comes about means to me that I must push my limits with my endeavors. I need to continue to teach and seek professional learning communities within the teaching profession that challenge everything. Teaching is paying it back and paying it forward at the same time. It is what I can do with both an indirect and often direct benefit to Ellie fighting the beautiful fight.
I made early enough to school several days ago to a weekly Thursday morning Mass in the Serra chapel, knee walker and all. From my car to the Communion table I had two students unprompted open the building door and then again in the hallway going to the chapel for me, my colleague Sally made room for me next to her in the second row even though I was late, and Father Joe said a prayer just for Ellie. All in a 10 minute span to start my Thursday. We are taken care of. God has a nice way of nudging us toward that full embrace of blind Faith, but it is only possible because when needed we are carried to it and carried unconditionally. I know the answers will come in His time. Until then we are so thankful for everyone who offers us help in getting to where we need to go.
