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. 

Growing up with Molly Penny’s Love

Growing up in a hospital isn’t all bad.  For Abbigail, she has friends, fun and Molly.  Since the very first few days, Abbigail has found the joy within those grey walls and she brought her contagious smile no nurse could resist.  So even on those dreaded inpatient days, Abbigail was happy in the playroom, riding her cars down the halls when she couldn’t walk anymore, pulling her IV pole with her and trying to catch up to the older kids.  It is rare to see a young child on 4N with self pity.  Much like Abbigail, most of them do not know any different since their life has always been at the hospital.  Luckily though, on those difficult days where procedures were feared, and chemos were hard, Molly Penny was only a holler away.  In the halls of CHEO walks a retired ER nurse who just couldn’t stay away from our kids.  Her heart beats in the halls, she creates shrieks of joy and laughter in the waiting rooms, and she makes CHEO a home for children away from home for so long.  With the help of the amazing Child Life Specialist, Molly Penny is by far one of the reasons Abbigail has gotten through some of her darkest days and toughest tears…

Abbigail has a lifetime at this hospital behind her already and still more ahead of her.  Having a disease with no cure means just that.  We are so grateful to have Molly by our sides when we are scared, upset or just need a good old fashioned laugh or two.  She doesn’t just help Abbigail and all of the kids, she is always making sure us parents are taken care of too, whether its just a coffee or a huge loving hug.  She is a huge part of CHEO’s heart and we will always keep her in our hearts. We love you Molly!

 

This morning we are off to CHEO again, to hopefully get more answers and a clear path forward for the neuroblastoma so that we can return to focusing on the OMS and giving some quality of life back to our precious girl. Today Abbigail will enter the “big orange door” again to Nuclear Medicine where she will have an other substance injected into her veins to be imaged which is more specific to bones. She has had this scan before and it is much the same as last week’s so let’s keep our fingers crossed that she is just as brave again! Mama is very happy to be by her side today, these moments are milestones for her, just as walking, talking and going to school are for every other child, and I can’t bare to miss anymore. I don’t ever want her or the boys to doubts desire to be there for them through it all, including the darker milestones.

It is with a hopeful heart and a desire for relief for our girl that I ask you to pray and offer your good thoughts today as she faces more scans, tests and procedures.

We may walk in through the orange door with fear and uncertainty but we will walk out with faith that no matter what happens afterwards, we will get through it together.

If you take a moment to stop and listen today, you will hear the unique sound of a young girl, fighting for her life, through joy and laughter with Molly Penny and her love. Just listen…

Emotions Running Fast

Whoa! Where did those tears come from? Almost 15 months and I have managed to keep those from rolling in front of others. Today seemed to bring about many thoughts, feelings, fears, and emotions I had been bottling up for so long, fearing they might be seen or heard with judgement or worse, pitty. For the most part, up until now, my tears have fallen on my pillow. The tears of fear for my baby girl’s future, of sadness for the unfairness, the endless pain and suffering she endures, and the tears for our family and the battle all my boys, husband included, must face too. All of these tears, soaked into the pillow for so many months…then today.

Today began with many of the daily frustrations that come with the new territory; family with a “special needs” child. I can’t believe I am saying this “out loud.” My precious girl has always been special, but now she has special needs, needs that I may not always be able to fill, needs that require extraordinary measures at times, and needs that require special attention, specialized care and therapy. Today was the first time I may have swallowed that pill. This new reality that I never really “saw” until now. I have never feared going out with the kids, having fun as a family, taking all of the kids with us to an event, gathering or celebration. I am never worried of how they will act, if they will lose their temper or patience or if I will too, I have always loved bringing my kids along with me anywhere I go and I have even travelled alone with the three kids without fear. Today was different. Today I saw our life through a different lens and today I was hurt. Before it was even 7am, I found myself so worn down and so exhausted that I couldn’t imagine how I would get us out the door, let alone get us through the day, week or next months. I am their mom, how is it that I can’t make it and it is only 7am? My shoulders dropped, head bowed and the tears welled in my eyes. This pain was knotted in my throat it seemed. The lump grew a size bigger this morning as I realized our lives were indeed different and will not be returning to “normal.”

We did eventually get out the door and off we went, van packed with balloons, cheer, our family and smiles of hope, hope for a great day! Today was the CN Cycle for CHEO, Candlelighters and RMH {benefiting childhood cancer research and famillies}. Today we were spending the day with family and friends and fellow warriors with one goal in mind, to kiss cancer goodbye together. Our Team Kisses for Abbigail set out to do that and raised over $4,500 on our own!!! The morning was rushed, the kids were anxious, I was tired and stressed over insignificant things, so when we pulled up to the event, and I got out to see dozens, and I mean dozens of people, wearing white, all there to honour our daughter, I couldn’t help but cry. I couldn’t help but feel so much love and so much support. We have the most amazing support system of family and friends who came out in the heat to proudly wear a piece of cardboard that represented our personal fight with cancer this year. To many, this was an event to raise money for Childhood Cancer Research and it was that, but to me it was a lot more too. Watching so many people walk along side us, travel from far to just be there for support, carry our children, laugh with us and give us some good old fashioned hugs was absolutely heartwarming and amazing. Today was amazing! The event was a success, raising over $725K for Pediatric Cancer in Ottawa, it was also a success at letting me open my heart to the blessings of this “new normal.”

As the day culminated and I splashed around with the kids as they bathed before bed, I looked into my Abbigail’s eyes and saw my two year old baby girl, my warrior, my hero…battered and bruised, but never broken. Today was the last time I tucked in my “baby” as she will be three tomorrow! My “baby” girl will be one year older. She will have fought through an other year! We always seem to mourn our children’s birthdays, as the milestones are one year closer to them leaving our home, making a family of their own and just simply growing up, but tonight I felt happy she was going to be celebrating a birthday tomorrow. I am excited to see her blow out yet an other candle, open gifts, tear paper, throw cards and be a three year old. My baby is growing up and we have the privilege to watch and be a part of it. They are our gifts and for that I am grateful for and each year I will meet these milestones with happiness and gratitude for an other year of memories, sorrows felt together, laughter and joys. We are not all so lucky to have one more birthday. Although I am crying as I write this, I will not be sad that she is growing up, I will be happy that she is with me to blow out this third candle tomorrow. The tears will flow tomorrow, but they will be tears of absolute joy and happiness for the loving family that we have created Matthew. ❤

As I tucked our kids into bed tonight, I did not see the frustration from this morning, I did not hear screams or outbursts, I wasn’t worried about the time, the mess or the next day and what it might bring. As I tucked them into bed, I felt like the luckiest woman on earth. Here I am with three beautiful children and my husband at my side, and all of the blessings that come with the support of family and friends. The stresses of the morning, the fears of the future and the tears I wept today were pushed aside by their kisses goodnight. This journey is hard on us all and it is not something I can always express but at the end of the day, we are together and that is half the battle. Matthew, William, Abbigail and Madden, you are my world and nothing means more to me than your smiles, love and happiness. You are worth all of the tears I must weep…

 

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March Break…Living!

Sugar bush, pyjama days, some warmer weather, a couple chemotherapy treatments, breathless times at cosmic adventures for the big boys, a sleepless night in a hotel, many splashes at the indoor waterpark, late night hockey game in a special suite, some meltdowns and screaming matches, lots of hugs, kisses and laughter and we did it all together! We had a great March break, we hope that you did too! xo

Disney on Ice

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Sugar Bush

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Outdoor Fun

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Second of Four Chemo Treatments this Month {We Fight as a Family}

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Cuddles

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Indoor WaterPark {Hotel Stay-cation with Doctor’s Blessing}

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