Happy Easter Adjustments

An other holiday celebrated unlike any other that have preceded. Much like last Easter and then Christmas, this Easter weekend was not without its challenges, however we overcame them together and ended with smiles and memories for years to come.

We completed our course of chemotherapy, I often – if not always, say “we” freely when referring to cancer/OMS treatment and journey because I would never dream of letting my baby do it alone (I’d do chemo if they let me), so we completed the fourth treatment, we seem to have overcome the gastro bug that knocked Us out and we made it through an other holiday!

Friday was a nice day, we relaxed and hung out at home as a family not doing much of anything except enjoying each others company, some more than others I imagine since we started our pulse steroid treatment at home so Abbigail is not always “pleasant” to her brothers. Nonetheless, Friday was nice! Saturday morning William stood at the window for what felt like an eternity, repeatedly asking when his grandparents, uncle and most importantly, his cousin would be arriving. Since it was only 6am, we attempted to convince him to keep busy as it wouldn’t be until well after lunch until they arrived. Wow was that a long morning! Once family arrived, toys flew, babies screamed and the boys had fun! I love watching my oldest son and my nephew play, it brings me back to the days I used to con and bribe my little cousins. Abbigail tries so hard to fit in and most times does with those two but this weekend wasn’t her finest of days. I won’t go into detail, but she was a wreck. A ball of pain and emotion! She’s recovering from surgery, getting over the flu still and on steroids. Enough said. If you still don’t know why that would be so bad, I’ll write about life with steroids for you. The kids had fun and the bunny left behind plenty to be grateful for. Although these holidays have changed, some being consumed by medication, ER visits (like Christmas Day) and symptoms of the disease, chemo and drugs, we are together!

Family left, the mess is cleaned and the babies are asleep.

Reflection…

Easter is about sacrifice for the greater good. Sacrificing for those we love and something bigger than ourselves or us together. Everyday Abbigail sacrifices and everyday our family does too. We sacrifice more than any person could imagine and I only hope that it too is for a greater good. I will continue to fight with and for my baby girl knowing in my heart that one day these painful days are a distant memory only thought of as a reminder of what we are so grateful for. Abbigail will move mountains and she will help others through her journey…together we will come out stronger and that is enough to make these sacrifices into stepping stones.

Happy Easter!

Despite the sad few days she has had…she is still our fun loving and candy obsessed daughter!

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A Good Day¡

Today was bound to be a good day! How could it not be?

Abbigail is about to receive her last of the four scheduled chemos for this treatment protocol, she is finally going to have an “easier” access (no more IV tortured by numerous pokes and screaming), her old bump no longer causes her severe pain and we are going to witness a dear friend complete her very last chemo treatment and ring that bell¡ To an outsider this must seem pretty grim if this is our idea of a great day and really they are not wrong but when you see and live the pain of these kids you begin to take these small and beautiful victories and make them big! Today is going to be a good day I told myself on the long drive to Ottawa this morning, and it was!

Her last of these treatments, for now, went as well as I could of expected 2 days post surgery for her PAC. She is tender, bruised and very protective of her wounds. She has an incision in her neck, and two on either side of her ribs; one from the removal of the old port and one from the insertion of the new one. Her new bump is slightly higher than the last, perhaps as she has grown a whopping 3cm this year! So needless to say it is expected that she be a bit more agitate at today’s treatment.

Although the clinic was busy it was nice because we got to see many friends and familiar faces we haven’t see in some time and spend lots of time celebrating Easter with our favourite nurses and pals.

It’s quite nice to feel “at home” there! Many must think I’m nuts for saying or feeling that but truly Abbigail, Madden and I have spent many nights and many more days there in the last year than most do in four lifetimes. Madden has grown up there so far and it doesn’t make me sad, it makes me feel blessed that we feel so welcome and taken care of there. I trust her doctor and nurses and they absolutely adore her and each time we walk in there we see more open arms than the last. When Abbigail has a tough day and she isn’t “herself” we can count on understanding not glaring and if she has special needs that might not be quite “protocol” they don’t hesitate to accommodate her and make her feel better both inside and out. I can go on and on about this so I will save this for a special day!

My precious baby girl had some tough moments today, she was in some intense pain and unfortunately the chemo and port access aggravated the pain but she had a long nap and we made her comfortable ensuring she wasn’t in pain as much as we could. She is stronger than most adults I know! She woke up full of life and ready to play with her nurse quickly yelling “MiMi & BaBa (aka Pam)”

Abbigail finished treatment and saw special friends and used her new port without issue (other than pain from tenderness of surgery). It was a good day!!! She didn’t get the stomach bug we all did and her counts are pretty decent this week so bring on the sunshine because we are going to have a great weekend…

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Tolerating Chemo

Brave*Strong*Fighter
Brave*Strong*Fighter

Abbigail has gone through her third of four chemotherapy treatments for this run at the bucket.  We have been here before, in December she did four of these same treatments and we were hoping it would be enough to begin tapering her other drug treatments and begin to get our little girl back, it was not.  Since that was not the case, here we are again.  Abbigail tends to tolerate the treatment fairly well, with little to no nausea during the infusions and due to the nature of the chemo, she doesn’t lose her hair or get sick shortly after as many would assume with such treatments.  I have noticed that her last two infusions she was very irritable, uncomfortable and fatigued during treatment and as the rate increased (how fast they push chemo through her body), she began experiencing mild nausea and severe irritability.  We are blessed with the most amazing nurses who know exactly what Abbigail needs and who take the very best care of her.  I too am blessed by these nurses because without them, I may break down during the torturous moments where a mother must do the unthinkable at times. I love you ladies … you know who you are ❤

When it comes to her blood counts, Abbigail is getting very low but as expected since that is the point of what we are doing in this treatment.  If you are not familiar with what we are trying to do with all of these treatments, I can quickly and simply explain it by telling you that we are purposely killing her lymphocytes (part of her white blood cell count) because they are usually what would activate her immune system and fight infections, however in OMS patients, activating and maintaining an immune system is turning the key to further attack on the brain.  We must stop her immune system, wipe her immune system’s memory bank, and hope that as it slowly regains its fighting powers, that it doesn’t attack her brain.  So fingers crossed and prayers continue for better results this time around.  In January, post chemo, we noticed an improvement in her symptoms, however only a few weeks later we saw a significant decline once again as we moved further away from her last treatment.  It is common in OMS treatment for symptoms to relapse as you begin to taper the treatments and drugs that have kept her immune system “turned off” and so each patient’s treatment is tailored and tweaked to fit their “requirements,” often taking years before a remission is declared and a sense or “normalcy” can begin.  Abbigail will never be symptom free, however we are hopeful and optimistic that she will reach a baseline where Abbigail will not experience the dark days she does presently.

We have one more treatment scheduled for this Thursday, we are eager to have it done and hopefully enjoy an Easter weekend full of family and fun and sunshine!  She has been very tired this last week, which is different from the last round we did in December, so I am counting on some pretty low but optimistic blood counts this week.  Her OMS symptoms have not improved yet, she is still the same if not worse than she was a month ago.

Abbigail’s Story from the Beginning…

I would like to start from the beginning for those new followers and anyone who doesn’t fancy Facebook and who may not be up to date on Abbigail’s prognosis and progress.

From the beginning of her journey & fight…

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Our Innocent Abbigail at 7 Days Old

One year ago surgeons successfully removed Abbigail’s cancerous tumor. Some might think that once the cancer was gone that she would return to the life of an average toddler, which was not the case. She endured 12 months of chemotherapies, transfusions, treatments, immune altering drugs and countless procedures that brought heavy tears and frightful moments to her not-so-average life of an oncology toddler. That moment when the surgeon walked down the long narrow hallway to take me to her, in our minds, she became cancer free. This did not mean that the battle was over, this had meant we dealt with the obvious and that the true fight begins. Abbigail endures regular scans to ensure that her cancer has not hidden itself and that she does not relapse. Neuroblastoma does have a relevant relapse rate, hence the numerous scans. We are however optimistic after her 1 year scan last week, which came back clean as a whistle, that she continues to be cancer-free and that she will continue to beat the odds.For those of you unfamiliar with much of Abbigail’s diagnosis, she is indeed a case for the books. She is 1 in ten million a year that are diagnosed with this rare diseased indirectly caused by her cancer. Opsoclonus Myoclonus Ataxia Syndrome (OMS) is life altering and can be very debilitating at times, especially for a toddler, and it currently has no cure. When Abbigail first was diagnosed, she couldn’t stand on her own, she couldn’t walk, nor barely crawl and even sitting up alone was a task. This is not close to the average for a 22 month old, given that she was running, climbing, self feeding, and keeping up quite fine with her 4 year old brother just weeks prior. Abbigail went from an above average 22 month old to barely being comparable to a 9 month old. She began quickly losing motor functions, both fine and gross, shaking tremulously, unable to keep eye focus (darting eyes), confusing prior learned sounds/words and being quite irritable and inconsolable at times.

Once diagnosed and a treatment plan was researched and decided on, we put one foot in front of the other and pushed through the next day. Abbigail began a year of more than I ever expected. I did my research, I read more studies than I did books in my 30 years, I may have gone through more literature in the last 52 weeks than our oncologist has when it comes to OMS. I was prepared…so I thought. We went into her first day of treatment with the understanding that in 12 months she would be back to health with perhaps a few minor setbacks that would easily be overcome and some mild side effects from her treatments. Watching the other sweet kids walk in and out of the oncology playroom with numerous cancer treatments hanging from their IV poles, hearing the other moms talk about how this was their 15th trip to the ward this year and seeing the size of some of the children’s charts on the shelf, we had it easy we thought. Now, 52 weeks later, 3 treatment plans unsuccessful, we too have had to push a heavy IV pole with three pumps attached to it, and I laid awake in my daughter’s hospital crib crouched at 9 months pregnant just to hold her while she endured yet an other sleepless night attached to too many wires and her charts too are so large they require numerous binders on the shelf.

In March 2012 Abbigail started her first treatment protocol, which consisted of high dose steroids orally at home on a daily basis, in addition to the other oral medication to control the treatment side effects and she received intravenous chemotherapy and intravenous immunoglobulin (IVIg) transfusions every 28 days. If that wasn’t enough for her little body to endure, she underwent weekly blood tests and office visits with her oncologists at CHEO. Abbigail’s acute symptoms, the obvious physical ones of walking and standing improved significantly, however never returned to anything near that of a 12 month old just yet. Then throughout the summer months we began to see her symptoms return and she began once again to deteriorate. She began shaking again regularly, her eyes would dart numerous times in a day and her awkward and uncoordinated balance became more and more obvious as the weeks went by.

It was decided by her team of oncologists that this first treatment plan didn’t succeed, and that we would begin the search for a new treatment plan, which came recommended by a doctor in the United States. This next plan consisted of much of the same however rather than daily immunosuppressive steroids we went to a higher dose pulse therapy in addition to the IVIg and side effect medications. Come November 2012, although we saw her walking more and shaking less, her gross motor skills took a back seat to her now cognitive symptoms. We experienced some of the darkest and toughest days yet. We were losing that bright bubbly baby girl to such frightening and dark symptoms. It was and is so hard to watch our once joyful little girl slowly slip away and viciously lose her sparkle.

Now, pushing the lump in my throat further down, as we run through an other treatment plan, we again, in part with our oncology team, consulted with the same doctor from the United States who is as experienced as you can be with OMS, and we came up with an other plan and it started immediately. This plan consisted of an unapproved course of treatment for her diagnosis however one that proved promising in the little research there is out in the world for OMS. Hope was restored and although the battle was nowhere near over, we had a plan again. Abbigail endured four more weekly rounds of a different targeted chemotherapy, throughout the month of December; her last treatment was January 3rd! She received her treatment of IVIg transfusion on January 18th and February 15th as she had been for the last 12 months as well as continued to receive steroid treatment at home.

That brings us to the present.

Abbigail saw a number of weeks in December and January where her physical symptoms and motor skills appeared near average for a 2 year old (she is almost 3) and her rage, behavior, mood and overall irritability had improved enough for us to breath again. Her sleep disturbances continued however we felt that was bearable. Come February, we noticed that each day Abbigail got increasingly worse. She now requires a supplement to sleep, otherwise I am up with her a lot, sometimes up to 8 times a night, which is only exacerbating her OMS symptoms. She spends many hours a day screaming or fighting herself in a fit of rage, sometimes inflicting pain on herself or her siblings and us. Her walking is still leaps of improvement as we look back on one year ago, however she tends to be uncoordinated more and more and her ataxia (shakiness) has gotten more evident over the last month; more often when she is tired, which feels like all the time now.  I know these symptoms all too well and I recognize them, their patterns and how her body and immune system tend to react to them on a daily basis and that is why I have no doubt in my mind, my heart and my gut when I say that she has yet to induce a neurological remission.  This is why we decided to start an other course of treatment.  Her oncologist agrees, that she has not reached her “potential” yet and that we can not take any chances of letting her immune system go on the attack again, risking further brain damage and life long sequelae.  So for the month of March, Abbigail will endure yet an other course of chemotherapy, every Friday until Easter.

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2013 March 08 {Day 380}

Abbigail may exhibit symptoms that would make most strangers sneer or stare and she might not be up cognitively with her soon to be classmates, but she is still our little girl, she still loves playing dollies and dressup, and she adores her big brother.  I could go on and on about how she is, how I wished she was and how she steals my heart each and every smile regardless, but I will save some fun for an other day and many more posts.

I realize this was long, but now that you are all up to date on her prognosis and progress with this brave journey, I invite you to continue to follow her journey through my eyes here and to like her Facebook page http://www.facebook.com/KissesForAbbigail for fun photos, quick updates and interactions.

Thank you for reading and sharing.