Day 2 & a Tired little boy

He had a great night last night, something closer to his old schedule at home. Slept eight solid hours, up for one and back down for the two more we’re so thankful for every morning! He was quite sedate during the day. Happy, but quiet and dozing lots. He only really talked a few times for Grandpa Chick but doled out the smiles like monopoly money to anyone who'd look. I like to think his little body is taking the down time it needs to heal against the onslaught of such powerful drugs. I spent my day cuddling, nuzzling and just soaking him in. While I recognise that the missing need for independence on his part is a serious sign of what’s going on inside him, the mother in me just can’t help cherishing the stolen moments.

Every fibre in me is just vibrating with the hope and need for this miserable invasion on his little body to respond to the ugly drugs. Up until treatment started, I was stalled on simply processing the knowledge that there was something attacking my child and that my life was going to completely change NOW. I can feel my focus shifting to him instead of swirling around myself. The part of me that pushes through life’s challenges is once again hardening, turning to granite. I want to infuse this little person with the strength and stubborn resolve I feel solidifying in my core.

Elbows up, people. We’re coming through!

We're starting him early...

Whew!

Started the IV chemo today. Very serious stuff. My windpipe ached with dread as I forced myself to push the air-come-razor blades down into my lungs, watching the nurse hook the effective killer drug up to his little chest IV line. I had the craziest urge to switch my position from holding him down to tucking him under my arm like a football and bookin’ it for the door. I know this is necessary and that his good cells will recover. I know that there’s no other way. In order to save my baby, they must poison some of him. I get it, but it doesn’t make breathing it any easier. All the while, he’s gurgling and smiling at my restraint of his ever-seeking hands. Blowing bubbles seems to be his favourite new pass time.

Cleaning the PICC lines was on the to-do list today. I surprised myself by looking forward to the opportunity for closer look. There are tiny little nicks in his skin where they went in, or had tried to. It reminded me of catching the ends of very sharp shears on your fingers when you misjudge your distance... little criss-crosses (sorry for the career-specific analogy, non-groomers). The lines themselves come out of two very tidy larger ones. The nurse carefully cleaned both sites and put the clear sealing plastic over them. No more gauze, as they’re healing well. The original biopsy site on his shoulder, from two weeks ago, has a matching tidy line that already looks much better than my own recent run-in with the C-section blade, 5 months ago.

Kaleb, himself, notices nothing but our long hair falling into range as we lean over him. That, and Francis the turtle living out some adventure on the TV above. He really does love all this attention, though he could do without the pulling off of all the tape!

I watched him like a hawk the entire day. Only by about 6 pm did I relax enough to plop him into his wud-b-walker (the newer model without wheels). He was ecstatic to bust loose from his cozy jail cell. I’m sure that if we’d handed him a tin cup, he’d have been running it along the crib rails. Never once did he display any discomfort, except for being confined. I know not all days are going to be nearly this good, but I’m happy to be finally started on this road.

Enough hopeless moping & fretting... time to kick some ASS!

I've got to bring the camera to the hospital. He continues to be a wooing little clown there.

We had an exam with the ophthalmologist yesterday. The droopy eye has been determined to have no connection to his other issues and the look of it will lesson as his structure grows larger. Most children learn to control the twitching that occurs during eating/drinking. That is all hopeful news and nothing that really surprised us.

Hello everyone.

We have such fine friends. Thank you all so much. Thank you also, to those who don’t even know us. We take so much fortification from everyone’s support and shared stories.

I made a wish of my deepest depths Tuesday night, my last night at home for quite some time. The sand tickled my skin along my arms and neck, sifted through my hair and crunched under my heels. It seemed to cradle my entire body as I lay prostrate in my pyjamas, in our riding arena, looking up into the brilliant stars above. I tried desperately to tap into my emotions. The longer I lock them up to enable basic functioning, the harder it seems to break them free for processing. I understand my body’s need to process and purge my daily feelings in order to better cope with the next day’s load. The stress does bad things to me, if left to build up. The stars seemed to sing out their formations above. I only recognised one constellation in this view. It means nothing to me. From the edge of my vision, I caught the tail of a shooting star as it disappeared over the tree tops surrounding my chosen theatre. Hope leapt through me before I could stop it. While I want nothing more for things to turn out for the best and work hard all day to believe, at night I am forced to admit I so badly don’t want to live through the devastation of the alternative. I’ve tried time and again to get a read on this major life development. I’ve often been able to do that, sense how things will go. Either I’m too close to feel true things, or this one will just elude me as they sometimes do. The desolate silence of my late-night environment gently crept into every pore and escorted all of my negative feelings out, down into the cool, waiting sand. My pulse slowed to the rhythm of the soft crunching and blowing of our two horses, not 30 feet behind me in their pasture. I let everything wander from my mind, out into the impossibly still night. And then I asked. I begged. I poured everything I had into the most obvious question of my heart. Just as I did that, a chubby, brilliant star marched boldly across the middle of the sky. That I could not ignore. I carefully placed my kernel of hope in such a cheerful omen.

I am not a person of religion. I appreciate spirituality and whatever that means to all people, however they need to define it. My husband prays and I find comfort in that. I have a vague understanding of energy and how my own impacts my surroundings, especially when it comes to animals. I don’t want to look too closely at that, instinctively knowing my Type-A tendencies will ruin my more intuitive self-lessons by trying to cram this understanding into a tidy little box, alphabetised on a tidy little shelf. I prefer to go by feel. However, please know that we are receptive to and grateful for every effort on every level when it comes to our precious little man.

Now down to business. I do understand the PICC Line is a wonderful and necessary machination. I accept that his life in hospital will be better for it. I will, as always, push my reflexive emotions about yet another “abnormal” condition aside and appreciate the results, especially considering his ever-collapsing veins. As I write right now, Kaleb is being prepped for the surgery to install these lines. A spinal tap and skin biopsy will also take place while he’s under anaesthetic. The tap is to administer chemo directly to the fluid in his spine and brain, a somewhat separate system from the rest of his blood flow. The biopsy is to establish that there are no cancer cells activated on that level, as well.

I will log in tomorrow, as I’m sure we’ll have some more news about how things went and continue to roll.

Words are too pale by far...

I’m going to try to be intelligent and articulate, here. I’m having a pretty blue one, which happens to both of us occasionally, though thankfully, separately. We’re each getting good at carrying the other through until we can cope again. I know once things do get going, I’ll be terrified of the pace, but being stalled is excruciating to a ridiculous type-A, such as myself. They’re now talking about surgery for the IV lines on Thursday. I can’t even begin to take my brain near the idea of something coming out of his little chest... we don’t start true chemo until the lines are in, of course.

I logged on to scads of donation receipts today. Those and the notes keeping us up to date on mind-blowing local efforts on our behalf just render us utterly speechless. We are so fortunate to have friends and family such as you all. Most of you are going through your own personal hells with life trials and here you are. All your written and physical support is blowing us right out of the water. We have to prepare ourselves with Kleenex and held hands to even open our email these days. You’re all so amazing. While we’ll never hope to reciprocate appropriately to all of you, please know that we will double & triple our efforts to pay it forward just as soon as we can.

Bumped

Some shots from last night...

Apparently this happens in our hospital system. The different departments seem to get ahead of themselves, misfire, get you all psyched up and "Ooops. Maybe tomorrow."

If only they could think of how trying it is to prepare your brain and your heart for starting such a toxic, nasty procedure to save your child's life... never mind clearing your head enough to plan the logistics of what to bring, who's staying overnight, blah blah blah. At least he's not a screaming urgent case.

I'm more stressed than relieved to be home tonight. Oh, and maybe tomorrow night. The lump in my throat and churning of my stomach are getting lesser every time we drive in... I guess that's one plus.

Last post before our world is turned upside down.

We’re ready. Right? How the hell do you get ready for this. Our bags are packed, anyway.

I’ve been on autopilot for these two days which have felt more like four, blocking out anything remotely close to our new reality. Even talking to clients, I’ve already polished my techniques of deflection. I’m quite cheery on the exterior. I keep reciting the pale, hopeful facts like saying them means something.

I feel like I’m hiding in one of those character suits... looking out through tiny eye holes, big smile painted on the outside as I’m hawking some cheap product and waving to the crowd. Inside the suit, my face is blank, my eyes empty, my insides churn and burn. I’m grateful for my restricted vision of the world around me.

Once in a while something pulls me to the surface. The heavy fragrant air that seeps into me as I step outside the house between misty rain showers. The scents pop me back to my childhood days at West Hawk Lake. How I wish to be transported back to my previous carefree little self, just for a short visit. I used to soak up and drown myself in every heady fragrance nature has to offer every chance I had. Every beautiful sight I’d try to stamp into my memory. My last dog taught me how to hold on to and cherish every tiny gift of my surroundings. Never did I imagine how vital that lesson would be. I have never been more relieved to see my chase in the material rat race in the rear view mirror.

This withdrawal, a survival technique, has become so automatic for us that my husband and I have come up with a cue to pull the other out when a reconnection is needed. I’ve observed other spouses in the ward who’ve been on this road for months, even years. I can feel the tension, the vibration from the tenuous white-knuckled holds they struggle to maintain on themselves. They’re short and harsh with each other, intent on simply coming out the other end of this nightmare. More combatants than partners. Patrick and I are critical to each other in this challenge. We’re determined to maintain the team mentality. The second tragedy of our lives as individuals would be to lose each other in this abyss. It’s certainly the most difficult trial I’ve encountered, yet. He’s been through so much more... While I am frozen with my own fear and pain, inside I rail and scream at the idea of him facing yet another make or break mountain. He is the strongest and truest person I know. I can only hope I come through this with as much grace and integrity as he naturally manages time after time. I am exhausted for him and am amazed that all of my life goals have dissolved to leave behind one primal drive in my own personal pursuits; to hold together and nuture his most precious life-long dream and acquisition. Our family.

More Mush for Your Mind

I’ve had many inquiries regarding a place to send donations. I’ve fumbled through setting up a PayPal button on the menu to the right. If it doesn’t work, please let me know.

It took me a while to accept not only that things will very soon drastically change for us, but that this is a form of actually being able to do something on your parts. I understand the need and desire to help friends, to act in their times of need.

Please know that we are overwhelmed and so comforted by everyone’s responses. This blog has already evolved to offer yet another dynamic that I couldn’t even conceive of when I started it. When we need a boost, when we’re feeling particularly low, we’re already logging on to read and re-read your words of encouragement. It means more to us than I can articulate... and as one full of verbal vomit, that’s quite a feat!

“THANK YOU” is so inadequate and I’m sorry that it’s all we’ve got.