DAY +18 – The road less travelled

Would you believe me if I told you my neutropenic but afebrile girl was sick? If her vitals were only slightly elevated would you think I was paranoid? Do you think you know enough about OMS because you read an article and a few pages of her chart? What if I insisted something was wrong, would you believe me then?

Abbigail is 1 in 10 million! She defies all odds and sneaks within every minority she possibly can; always the star of the unlikely and rare! It is near impossible to apply any expectations to her recovery post transplant and if she can, she will take the road less travelled! She’s a true warrior, paving her own way and leaving her mark. She doesn’t need to scare us as much but we are proud of her always, blessed and honoured to be her parents.

A week ago I was running on little sleep, no calorie intake and likely only enough water to flush out the caffein that was keeping me going. Abbigail was a mess. I had shared with you the devastation and fears I was facing as I watched her battle what I described as her worst relapse of OMS, something similar to the first days post diagnosis. My heart was in disbelief, but my gut and instinct told me she was ill. Any time Abbigail is nearing any infection, whether a cold, flu or urinary tract infection, I always “know” before any medical signs, symptoms or tests. I always speak as though I too am going through treatment, not to take away from the trauma our girl has experienced, but I feel connected to her in such a way that I feel her pain and truly know her on a level I can’t explain. I knew that despite her fevers, lab tests or vitals, that my daughter was not well. I was reassured over and over, as I rang the nurses bell or paged the doctors to return and exam her, that Abbigail is doing relatively well and that she shows no signs of infection. I was never reassured. I continued to monitor her vitals on my own, take lots of notes and continue to show concern to anyone who walked in our room. There were many long days and nights I feared for Abbigail, that her unique presentation would hinder her transplant recovery and possibly cause her irreparable consequences.

Tuesday morning after rounds, my instincts were confirmed; Abbigail’s virology lab work found she was fighting a dangerous viral infection that could threaten her life. My heart sank…the words mortality are too often spoken about on the transplant unit and when it is in context of your own child it is paralyzing. The “signs” and “symptoms” I was seeing over the past week were confirmed to be a result of her body trying to fight a virus that she didn’t have the ability to fight, hence the severe OMS. I have to explain that the medical professionals did not have grounds for worry because Abbigail did not have any scientific or medical evidence of infection…all she had was Mama’s instincts and knowledge; a three year honorary degree granted through a three year long, 24/7 placement in the field. Although doctors are aware of the rare possibility that because Abbigail has taken high doses of oral steroids twice daily for three years, that she may potentially not produce a “fever” to signal infection, they did not realize that this is what was happening over the last 10 days. Abbigail generally has a cool body temp and so when she hits 36.5-37F I know as her expert that she is likely fighting something. Anyways, she was indeed fighting something, and that something has her at it’s mercy.

Abbigail is at day 18 post transplant. Although every child is different, especially Abbigail, we expected her to have recovered by now, or at the very least begun engrafting to signal that her marrow has accepted the transplanted stem cells and is making it’s own cells. That hasn’t happened yet. So she still does not have the ability to fight any type of infection and remains in BMT isolation.

This virus is now taking over in her stern but frail body, and this week we found out it has infiltrated her organs and is passing through her stool and urine, indicating that it has progressed significantly this week.

She has begun treatment, however this treatment is also a huge risk and danger to her. The drug she is receiving, to help her body manage the virus, is a cytotoxic carcinogenic, which quite simply means it is toxic to her organs and is known to cause cancer. This drug causes kidney damage, resulting in dialysis or transplant and can be the cause of secondary cancers to her. You can probably safely assume that it was not easy hearing that the only treatment to potentially help our daughter fight and live against this virus was also likely to cause further damage and life altering morbidities. We started the treatment, along with the other precautionary medications, and although Abbigail is responding physically, the viral load is still increasing. This treatment will not kill the virus, the hope is that it will tame it enough to allow Abbigail to produce her own fighting cells to kill it off. This could potentially take weeks and months. The virus is killing her cells and the medication to tame the virus is also attacking her cells, making her weaker. Unfortunately, the only natural killer cells that kill this virus are the cells that we purposely eliminated from Abbigail’s immune system last year because they were the main cause of her OMS. Here Abbigail goes again paving her own path! The cells we killed to help her OMS are the cells we now need to save her life.

I have far too much medical information and knowledge about this and could write you a novel, but all you really need to know is that Abbigail needs your prayers. She is fighting hard! Between her resting and raging, crying and the doctors and nurses monitoring her, she still has moments of joy and that I am grateful for. She still shares her smile and screams for her favourite nurses to come sit by her side. She still shines and shares her spunk when she can.

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Halloween was a good day! Although she couldn’t leave her isolation room and participate in the hospital trick or treating events, she managed to lure the candy, treats and tricks to her bedside! She had a blast and when she finally settled and fell asleep she had a well rested night and smiled this morning as she woke!

The road may have gotten longer, darker and curvier, but Abbigail is a force that no one has ever witnessed before. She can beat this!

Thanks again everyone who has been messaging me, commenting on my quick posts and prayer requests. Thanks to so many people, organizations and groups who have been fundraising and donating (www.YouCaring.com/KissesForAbbigail), the burdens are easier to face with some extra help! Thank you to those who brought me snacks and “drinks” and also thanks to everyone who has been cheering Abbigail up daily with the mail they have been sending. Every morning she looks forward to checking her mailbox. Thank you!!!

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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