This is only the beginning

How did the hours turn to days? How did our vibrant little girl get so lost…so quickly. Her moments of joy are becoming shorter and fewer. Her smiles not so radiant and her laughter just a little quieter. She utters only groans and whimpers of pains, exhaustion and discomfort.

We started this path towards her miracle on August 19th with 4 days of some pretty awful and intense chemotherapy to prepare her body for stem cell collection. That cycle of treatment took only a few days to start the feared attack on her cells, healthy or not. We saw her hair quickly fall out within a matter of days, she became neutropenic, febrile and consumed with numerous bacterial and viral infections and she lost a few of her beautiful pounds. We spent more than half of the last month hospitalized, in isolation, far from home and away from the boys. This is only the beginning…

Last week after being discharged from SickKids and CHEO, we travelled back and forth daily for several preparatory appointments and procedures to ensure that Abbigail’s organs, body and system are well enough to withstand the next steps towards that miracle on this journey. After an exhausting week, dozens of pokes, blood draws, nurse injections, scans, office visits and more, Abbigail and family celebrated birthdays and spent some amazing quality time just being together.

Tomorrow there are several critical appointments to be had, one will be surgery to remove her port and replace it with a central venous line which will be used during chemo, transplant and post treatments. This type of line will be a huge change for Abbigail and likely a source of discomfort, frustration and even pain in the coming weeks as she adjusts. She must endure so much…

So the journey continues, with hopes of better days, or fewer difficult ones. Abbigail is stubborn and let’s very little control her. Tomorrow she will awake from surgery and I will hold her and remind her of her beauty, strength and the bright pink body she will then have (sterile cleaner dye) in hopes of catching my breath and maybe even seeing a glimpse of our firecracker’s spirit and that contagious smile before the days turn into months.

That moment…

I packed two lunches this morning, zipped up two school bags and excitedly but emotionally photographed you and your big brother under the tree, as I did with him each year. I saw you proudly standing at the end of the driveway with your big brother; waiting for the bus, with a pink lunchbox in hand and a smile so radiant it lit the early morning dew. I anxiously stood outside your classroom, proud you were sitting quietly, attentively and participating as every other child was, all the while still partly saddened you didn’t call out for me. I drove away in tears as I noticed it had been hours I was stationed at your classroom door, and I thought of the years that past too quickly and how far you have come, and how hard you have fought to get to this day…this very moment. The day was long. I stood waiting for the bus to bring my babies home for an hour outside in the rain and wind…but I didn’t feel cold and I wasn’t wet. Finally the bus pulled up to our driveway, after what I felt was at the slowest of speeds possible, and I saw your pride and your excitement as you ran up the driveway; ponytails flailing in the wind and boots splashing in each puddle. You were happy. You were a typical 4 year old who was excited to be a part of something and accepted. Once the excitement settled slightly and you both sat down for dinner, it seemed as though your father and I couldn’t keep up to the stories both you and your brother had to share about your first day of school. You competed for airtime, both rambling about your classmates, rhyming off names and games played at recess. At that moment, we were so happy, so proud and nothing could have brought us down.

Then I woke up. On the couch, 11 at night and the TV playing some infomercial about a new anti-aging remedy. Then I realized we weren’t going to feel those joys, see those smiles or hear those stories. I wasn’t going to be that mom in my dreams.

Instead, I remembered I had to retake your temperature because you were warm and started to show signs of a fever at 9pm when I administered your nightly injection as you slept. Then there I was, trying so desperately to cling on, capture and remember each facial expression, feeling and joy that I had in that dream as I drove to the ER in the middle of the cold, damp night. That dream has been put down, left to the side and may begin to fade now as it comes to a screeching halt, crashing into our reality again. The reality that a fever tonight means that you will be examined and poked several times and for several hours before laying your head to rest as a patient on the oncology ward, because you are neutropenic; you have 0.0 fighter cells left in your immune system, opening the gates wide for bacteria, viruses and fungus to settle in your blood and take every dream you, me or your dad ever could have imagined for you. The fight didn’t end yet.

It is now almost 24 hrs after I awoke from that dream. I am sitting at your bedside, in an isolation room at the end of a brightly decorated but oh so dark hallway in the hospital, watching you lay lethargically, bruised from the overnight battle between neutropenic veins and the need for urgent antibiotics to avoid septic shock, and I see a glimpse of that girl, all dressed in pink with her princess school gear. A glimpse is all it is though, because now you are awake, unable to sit up because you are too week from the poisonous chemos given to save your life, unbalanced, uncoordinated, ataxic rendering you unable to walk, just as the first day we found ourselves in this room. You scream for “dew” which I know means juice and I am reminded that you won’t be sharing school yard stories tonight at the table because you lost your speech 2.5 years ago, before getting a chance to even learn your ABCs and we are in the hospital, far from family and even further from that dream than we were before I fell asleep.

Abbigail will be spending the next few days in the hospital, hooked up and trapped in to protect her fragile body from the many dangers that are outside these walls. Our flight is still booked for Monday, with the faith that our miracle is still within our reach. So now I lay holding my firecracker, praying that her body will begin to produce her own fighter cells and that she may become strong enough to board that plane to Toronto and begin the journey towards healing.

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