The journey continues…

Dealing with life’s daily interruptions are grueling when you have a sick child. Especially when “daily interruptions” can mean trips to the ER. Anyone who has been through the journey of caring for a child with cancer can attest to the fact that a family experiences many levels of loss along the way. The process of loss does not begin with the death of a child. In fact, personal losses for parents and siblings begin to pile up early, from the beginning of therapy to the final outcome of treatment. From the first day of treatment, daily life is irrevocably changed by the demands of caring for the sick child, and everyone in the house feels the pain. Siblings experience a great deal of uncertainty and anxiety, based primarily on the absence of their sick sibling and one, or possibly both parents, due to long hospital stays, or late night departures to the emergency room when chemo’s side-effects kick in, demanding treatment. Parents lose individual time with the healthy siblings, family dinners get skipped, school and special occasions get missed. It’s all part and parcel of the great amount of time that has to be devoted to the sick child, and the sacrifices that come with this reality. Siblings are acutely aware of the absence of their parents. What we wanted most to avoid was becoming isolated from our healthy children. Making sure they were involved in the care of their sister was an important way to stem the feeling of loss and isolation, and keep everyone together. How much that helped Abbigail’s two brothers I can’t be sure, but at least we are trying to keep our family normal, in an otherwise abnormal situation. While it’s important to focus on the healthy kids and how they are feeling, keeping a close eye on your spouse and their feelings is of equal or possibly greater importance. Given the difficulties and time constraints caring for a sick child can put on a relationship, it’s easy to grow apart. Most of the time, mom is one place, dad is another. I know this is a reality in our experience, the loss of personal time together in just about every aspect. The challenge is to try and restore some of the intimacy and private moments, while still dealing with the constant pressure of caring for your family. Ultimately, depending on the progression of the disease, there will be lesser, or greater losses the family will experience. Communicating with Matthew and the boys on how everyone is feeling, trying to keep us close, both emotionally and physically, is the goal, hopefully mitigating some of the loss that caring for a Abbigail has brought to our family over the last three and a half years. 

Today Abbigail and I are cuddling beneath a bright pink Barbie blanket, enjoying each other’s company, but it isn’t in the comfort of home and it isn’t surrounded by our loving family. We are in hospital. The boys are back home with Daddy trying to carry on with the daily chores and coping with the daily losses implicated when Abbigail is in hospital, and Mama by her side. 

Our family has been blessed this past month with the gift of time. We were given use of a home in Orlando, which offered our family the opportunity to drive down to Florida and have unplanned, uncharted time together, without treatment interruptions, or medical appointments. Abbigail was well the time we were away, with the exception of a few days of cough and cold, and she was able to have her NG tube removed, as she now eats well enough and is able to take her medications orally. She turned five years old during our trip and had the time of her life; splashing her toes in the water, enjoying breakfast with Sophia the First (child princess from Disney) and spending each day with her brothers and both parents without exceptions. There were no hospital visits and no additional medications or blood to be drawn. After countless beautiful sunny days with Mickey and his pals and so much pool side fun, we hit the highways for two days to get back home. We chose to detour 12 hrs though, which gave  us the chance to visit with close friends in Memphis. They have been relocated there for almost a year now, seeking life saving treatment for their daughter, Abbigail’s best friend, Phoebe. This entire trip, as busy as it was, truly was a huge break for our family, an opportunity to be together without planned interruption, a blessing beyond comparison.  There continued to be small daily losses as Abbigail still suffered from the sometimes debilitating OMS symptoms, which made the day to day struggling at best, but in the end it was magical.  Once all of the roads were behind us and we finally saw our fields, local farms and neighbours, we were relieved to be home and back to our comfort zone. As amazing as the ignorance has been this past month, we knew that this serene feeling of freedom from the diseases that have festered our lives for years, was likely over. 

Abbigail was due for her follow-up MRI on her liver lesions only two days after returning home. Wednesday, May 27th, she underwent sedation for the umpteenth time and had images taken of her abdomen and pelvis, with the focus being on her liver. After two days of waiting for results, we arrived to hospital again Friday the 29th of May to hear that her tumours have now doubled to an astronomical number of 60+ spots confined to her liver. This is not only puzzling to her team, but also very concerning and worrisome. Abbigail is continuing to pave her own way and write her own story about Neuroblastoma, relapsed disease and living with OMS from infancy through childhood and we will keep following and supporting her with all of the hope and faith that we can muster. 

That Friday also turned out to be one of those unimaginable moments in a parent’s life, when they hold their child tightly, fearing the worst, but knowing that life is a gift…that this child is a gift that can be taken from us at any given moment. That moment of surreal fear brought nauseating feelings to our clinic room Friday morning as Abbigail threw herself to the floor in agonizing pain only mere minutes after showing off her talented dance moves. 

Abbigail appeared to be in septic shock as her body temperature rose well above 40 degrees Celsius and her heart rate jump to 175, forcing her bloodpressure to plummet down hard and fast. This brought on severe headaches, uncontrollable shakes and shivers and confusion. Abbigail was suffering from sepsis, what was once called blood poisoning. It was quickly determined that Abbigail’s entire system had been “showered” in bacteria when her lines were flushed post blood draw. It turns out Abbigail likely had her central venous lines too close to the pool in Florida, where bacteria came into contact with foreign and vulnerable object in her body. She was immediately started on antibiotics, cultures were sent off to the labs for analysis and we were transferred from the day unit care to inpatient, where we would be for the coming weeks. 

So again, here we are cuddling, well actually she’s snoring now, and although it has only been a few days, it feels like a lifetime.  We have so much uncertainty to face and far too many unanswered questions for both infectious disease and our oncology team, that taking it day by day even sounds and feels insurmountable. 

She continues to laugh and spread her joy!

In Abbigail’s mind, there is always laughter to be had and smiles to be shared.

Today she beamed down the halls of the hospital, waving to the many staff she has come to know and cherish; the cafeteria cook and cashier, the pharmacy assistant, the coffee shop ladies who keep mama awake and the ultrasound techs who took care of her baby cousin. She was such a proud big girl today, showing off her baby cousin and ensuring he knows his way around CHEO. While he was meeting his new doctors and having his first CHEO experience, she was doing routine central line maintenance, having her lines “unclogged” and blood work drawn for her weekly virology tests.

She doesn’t understand the details behind her diagnosis, she doesn’t know anything different than the multiple weekly visits to CHEO, treatments, surgeries, “sleepy time” (anaesthetic) and clinics. Abbigail is blessed with the naivety of a baby, not understanding why strangers are intruding in their personal space, but knowing their parents will keep them safe. Abbigail is still very much like her 4 month old baby cousin today, even at the beautiful age of almost five. She doesn’t know that she has a rare and incurable disease for which she has battled for three years and continues to. She doesn’t realize that the “medicine” that saved her life twice already, received through her central lines, aka “tubies,” is in fact chemotherapy and that it could cause future, secondary cancers, and life long, sometimes detrimental side effects. Abbigail is graced with a certain ignorance despite having her innocence robbed from her three years ago.

Tomorrow she will walk back into CHEO to have her liver scanned. It shouldn’t be long before we have more information and before we have a plan forward…something to cling onto and pray for.

Please keep her in your prayers tomorrow morning and envision a “healthier” liver for our princess. She deserves to register for kindergarten and not have to withdraw again this year.

Thank you everyone for all of the support!

When you ask “How is she doing” (Day 53)

Being home, back from transplant and her last chance at a “normal” life, has been both a blessing and a challenge.

The last few weeks we have experienced extreme joy and gratitude as a family; being together again, under the same roof in time for the holidays, and all of the festivities that come with this time of year. Abbigail has been slowly recovering from her transplant with very few complications and she has been regaining strength in her muscles, walking, “running” and even doing the stairs again. She isn’t showing any further signs of dangerous infections and she has been responding well to her new medications. It is only a few weeks to Christmas and there are no signs that lead us to believe she will be having Christmas in the hospital this year!!! She’s slept in her own bed now for 18 nights, she’s been able to stop taking the dangerously renal toxic antivirals, her CVL has continued to work, with at home maintenance, and she no longer cries for her brother’s in sadness. Abbigail saw her Princess friends at the mall last week, she also visited with Santa and shared with him her Christmas wishes, and she even shopped for her brothers. She has done so well, come so so far and been able to do so much since being home. We are so grateful for all of these tiny miracles in her life.

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Our bright and bubbly four year old girl is still lost within herself. There isn’t often an hour that passes in her day that she doesn’t spend screaming, crying, hurting or fighting with herself or us. Almost any activity, outing or event attempted, with her alone or as a family, is interrupted or abruptly brought to an end, in order to calm her or distract her from her own obsessions and thoughts. During her moments of play with her brothers, as we decorated our Christmas tree and have family meals, Abbigail is followed by a tall, heavy and cold IV pole; which holds her feeding pump. She still requires 24 hour NG feeds; which is fed through a tube inserted into her nose and through to her stomach. Since her conditioning chemo began, the first week of October, Abbigail has not eaten more than a couple hundred calories on a good day, so she continues to painfully have her NG tube replaced every few weeks to ensure she is nourished enough for her body to recover. When Abbigail asks for food, of any kind (only those bacteria free of course) you can be sure we do whatever means necessary to accommodate and promote her eating by mouth again, even if that means leaving the table, shortening an activity or changing our plans completely. Being able to leave the house is not easy; ensuring we have all of her central line emergency supplies, double checking we have the hand sanitizer and wipes and if we plan on being out longer than an hour we must bring her feeding supplies too, including syringes, adapters, sterile water, formula and pump. Our girl loves to shop and it brings her joy to hold a toonie and pay the “deedee” (cashier) but you will have to look through her mask to see her smile since anytime she leaves the house she is required to protect herself from germs with a mask in addition to the hand cleaning. You also won’t find Abbigail in crowds or shopping during peak times. I had to contact the princess company and have alternate arrangements made for her to meet the princesses briefly last weekend at the back entrance of the mall an hour before the crowd was to arrive to see them introduce Santa, then we raced the kids over to the other end of town to see Santa without the crowds. Abbigail still fights each and everyday for her miracle…she struggles through most hours,in one way or an other. At home we are getting through the days, trying not to think of her reality every waking moment. Come time to speak to the doctors, Abbigail is consumed by her friends company or Molly the Clown’s loving laughs and entertainment. If only I could ignore the reality. Her liver engines continue to climb, her kidney function remains fragile and at risk and her immune function is still compromised. All side effects of lethal chemotherapies and years and years of dangerous medications originally designed for either adults or other diseases.

Abbigail has made progress with her physical recovery; her marrow is producing cells again, although not yet functioning, we have no reason to believe they won’t be in time and her physical OMS symptoms have been improving and some even disappearing. Her hair started to grow back again but the bald appearance and mistakes that she is a boy still stand out as a reminder of her pain endured and struggles to come.

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The next time you see us or Abbigail, know that the answer to your question “how is she” isn’t as easy to answer as you may think. Although the most important thing is she is home with us, there is so much more that can not be explained with words. This road is still winding and unfortunately we do not have an end in sight yet, so please understand that when I say it is complicated or brush it off, that I am not being short, but rather emotional and heartbroken. Almost three years ago we were told she had cancer and OMS but that she was among the “lucky” ones and should be back to normal living before the year was up. Here we are today still on constant alert, administering dozens of medications every 6 hours and still calling CHEO our home. I have a hard time considering that she was “a lucky one.” My heart is aching daily for our constant complicated struggles as a family and for our daughter’s endless pain and suffering, but I am grateful for the hugs each night, the screams for mummy and the love we share as we celebrate Christmas in our new normal way.

Walls, Frustrations & Fears

We are so blessed; so thankful for all of your support, prayers, kind words and generosity!!!

http://www.youcaring.com/medical-fundraiser/relief-for-abbigail-s-brave-journey-through-cancer-oms/211166/update/222890

This part of our journey is proving harder emotionally and financially than I could have ever imagined…it’s only the beginning.

Barely even a week has gone by here in Toronto and already Abbigail has been through so much…too much. Upon admission, her UTI was discovered to be resistant to her current antibiotics, a change was made to her meds but that didn’t change the fact that her OMS was already running rampage in her body and to her brain. She was experiencing coordination and balance challenges as well as ataxia. These symptoms were somewhat alleviated as the days passed on IV antibiotics and Abbigail was able to play with her new friend and fellow transplant buddy! On top of her OMS, Abbigail’s CVL (implanted line for IV) was not working and had to be x-rayed before fate decided she required a new line and it was pulled out during a fall on our routine morning walk through the halls.

On top of these issues, we were told we were being discharged to Ronald McDonald with oral antibiotics until her UTI is dealt with. Sounds great right!?! Not really. This means that Abbigail has just “forfeited” her transplant spot at SickKids, the very place where the one and only phisician who accepted Abbigail’s case practices. For Abbigail this could be life altering. We have not only uprooted and made huge changes to our family’s life, but Abbigail has no more options. This is experimental however it is all we’ve got and Matthew and I pushed through and fought long and hard to find someone who would help us! Now we may lose this opportunity right now. This is a tough thing to swallow after all that she has been through and all that she will face if she does not get this chance.

I am trying to enjoy this time alone with Abbigail, make her happy and do things she loves while we can but we both miss Matthew and the boys and our family and I have a hard time not running scenarios through my mind constantly as we walk past all of the cancer hospitals, research bulletins and buildings downtown.
Today we had special visitors from home; her oncologist and interlink nurse paid us a visit at Ronald McDonald. This visit may have been short but it meant the world to me and Abbigail enjoyed the familiar faces! Thank you ❤️

We have some appointments scheduled this week and hope to hear from her doctor tomorrow regarding surgery, but in the meantime we will keep our blessings in sight and focus on them.

Please help me pray. Please help me beg! Our baby girl needs this and she needs this now.

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Just when I feel like giving up, I remember that there’s a little girl watching and she wants to be just like me. I can’t and I won’t disappoint her!

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Daddy’s Girl

No words necessary…she will never outgrow her Daddy ❤

Cuddles
She loved her daddy then…
...and does even more now.
…and does even more now.