{her updates}

We love that everyone wants to stay updated and informed with regards to Abbigail’s medical prognosis and treatments. I tend to be long winded and provide insight into the life that childhood cancer and OMS has made for our family more so than medical details and treatments for Abbigail, which is why I decided to create this page to sort out the details for you to follow and hopefully encourage your continued prayers

journey
Abbigail’s Journey

This chronological timeline is updated frequently to document Abbigail’s journey from the days just prior to when our lives changed forever on that February day in 2012. I outline her treatments and protocols and I highlight the days, hours and even moments that have affected her life in some way or another.

{July 2014 to present} Abbigail’s OMS is still actively attacking her brain any chance it gets and it is likely that her cancer has spread again, this time to the marrow in her pelvis. We are in the fight of our lives…please pray and continue to follow her journey for further updates.

{August 8 2014} Matthew and I met with the Bone Marrow Transplant team from SickKids hospital in Toronto. We have been in touch with them now for several months, and have been considering a stem cell transplant since before her cancer returned last month.

{July 24 2014} Her MIBG scan today showed no abnormal uptake within her pelvis or the remainder of her body; however we are still concerned that this is active cancer cells beginning to spread to her marrow. The danger of this is so great that we are investigating further because it is very likely that her Neuroblastoma has mutated over the years and is no longer taking up the radioactive tracer in the MIBG. Hopefully we will have answers soon.

{July 15 2014} Routine MRI didn’t offer us any new miracles. The lesion found last summer and treated until last Christmas, continues to call her liver home, however has not grown thankfully. Unfortunately, this MRI also discovered new suspicious activity within the marrow of her right sacrum. Her pelvis will have to be urgently imaged with MIBG next week to evaluate the extent of disease before developing a treatment plan.

{June 2014} This month we started to really treat Abbigail and our family with prayer, hope and faith. Many times we have allowed ourselves to lose that faith and let our hope take a backseat to what was before us. We took a trip to Montreal earlier this month to bring Abbigail to Saint Joseph’s Oratory. We prayed, had prayers upon Abbigail and received oils meant to capture your faith where it may have been lost, allowing openness for healing…healing for Abbigail but also healing for our family. This was a trip we will never forget
Due to the numerous and persistent UTIs, Abbigail was referred to Nephrology for further examination. She has been put on daily antibiotics for three months to see if it helps to prevent the infections and the pain that is associated with it. She has gone almost two months, after this appointment, without an infection, then her urine again showed evidence of infection and she is back at square one. Next step will be to see Nephrology again and perhaps also Urology to ensure there are no “plumbing” problems or defects causing these issues.

{May 2014} Abbigail is still experiencing numerous recurrent UTIs as well as severe constipation. These are definitely debilitating for any four year old child, however when you are already going through so much, this becomes very disabling. The pain in her lower abdomen is quickly becoming hard to cope with and we hope to have answers soon as the laxatives and Tylenol are not enough anymore. Abbigail’s fourth birthday was celebrated with lots of pink and love!

{NEXT Protocol #6} It was obvious to us that Abbigail’s OMS was in a full blown relapse and that her brain would only be suffering by prolonging our treatment options so we immediately took action, her oncologist spoke with several contacts across the province and then in the US. A doctor she is familiar with, trusts and who has treated several patients with OMS has suggested making one last attempt at suppressing her stubborn immune system, and so we are now putting her on an intense immunosuppressive treatment at home. She will take a new medication each morning and will have her physiological level tested weekly through blood draw and the dosage adjusted accordingly. We will continue this for 6 months with hopes of pushing her into a neurological remission, where we are able to taper her off of all other OMS medication and treatments. Oh and I must mention that her specialist she saw earlier last year, Dr. Pranzatelli, has been away doing research and very difficult to reach. It is unfortunate that there isn’t more that can be done for these suffering children, but no one is interested in studying or treating rare disease that do not make money.

{April 15 2014} Immediately following our return from Florida, Abbigail was scheduled for her regular follow-up MRI of her abdomen and pelvis which showed her liver lesion had not changed since January. It remains stable; however there was no further evidence of shrinking either. We move forward, continue the battle with OMS and keep the faith that her cancer remains stable for years to come.

{March 15 to April 9 2014} FLORIDA While we were in Florida, Abbigail experience two severe Urinary Tract Infections that brought us to the Arnold Palmer Hospital for children. She was seen by an ER doctor who was so kind, caring and charismatic with Abbigail. Her urine was tested and we were sent back to our holiday home with a prescription assuming that it would test positive the following day, which it had. We suspect that her OMS has been heightened with these frequent infections, which has caused her to lose control countless time throughout our three week trip and has also put her in a wheelchair come the last week away. The day after we returned home, she received her treatment infusion, but instead of walking in smiling as she usually does, and the nurses saw a difference Abbigail. She was being pushed in a wheelchair, much to her dismay, because she refused to walk and I can no longer carry her for 12 hours each day, especially from the van to the hospital doors, up the stairs and down the hall to the clinic, with all of our hospital bags.

{March 14 2014} Today Abbigail gladly accepted her port access for her IVIg infusion because in a few short hours she will be miles above, flying to Florida for her well deserved Wish Trip to see the “pink princesses” and have a tea party with them!

{March 2014} After months of trial and error and feeling so alone in this world, our family had to request an adjustment with Abbigail’s medication once again. We are hopeful that this will provide her with some relief as we seek help abroad for her OMS.
This month Abbigail complete a battery of “end of treatment” follow up tests, scans and procedures to see that the chemotherapies did not cause further damage to her heart, lungs, liver etc as well as to provide a baseline of her disease to date.

{February 2014} Since the winter months, Abbigail’s UTIs have become very aggressive and are affecting her quality of life on top of everything else. She is becoming very agitated and unable to get through some days without spending hours upon hours screaming, despite her medications from psychiatry. Her OMS is active and we can’t get a handle on it. We need new options.

{January 23 2014} Abbigail went through her first MIBG scan without sedation today. There appears to be no abnormal uptake to indicate Neuroblastoma activity within her body; however that is not to say that her cancer no longer takes up the tracers. We pray that her liver lesion is matured and no longer posing a threat to her innocent life but we are very aware of the facts and what this means. We are praying for more days…less pain for our baby girl.

{January 6 2014} Her “end of treatment” MRI was today; full body with special attention to her abdomen and pelvis region (where most of the action is). We were happy to see a slight improvement to her liver lesion in addition to no new areas of concern. Now on to the next few months before the next scan.

{December 16 2013} Abbigail’s 8th and final cycle of scheduled chemo for her liver tumour! She has received more than 2 dozen chemos over the last 6 months and we hope and pray that her days of losing hair, throwing up because of poison running through her veins and the weakness no child should have to suffer are over! Do we ring the end of treatment bell? Is it over? Unfortunately, we know too much, we have seen too much and Abbigail doesn’t fit into any pre-tested protocol that says she is likely all done treatments. Nonetheless, she has years and years of OMS treatment ahead of her yet and those treatments involve much of the same as her cancer treatments do. So for a 3 year old to understand the difference is not realistic. To her she is still in hospital several times a week, she still has a port, she still gets poked weekly and receives IV treatments monthly. Ringing that bell just isn’t in the cards yet!

{November 22 2013} We have been seeing Abbigail’s Psychiatrist regularly since starting on the antipsychotics, and although they seem to bring her some relief in terms of her irritability and inability to be restful or calm, we still see her in an extreme amount of uneasiness. She is unexplainably tormented by herself; she is no longer the girl we once knew. She is at constant battle with herself and it is now too much for her or us to handle without intervention. She is having her medication increased to help her reach more hours of REM sleep in hopes of alleviating some frustrations during the day and also to allow her brain time to rest. On a good night, Abbigail sleeps 1.5hours between waking.

{November 2013} Abbigail is still going through her cycles of chemo for the liver lesion, and we had another MRI which show further response to treatment. It isn’t shrinking much, but at least it is shrinking a mm here and there. During this last scan, we also had her legs examined where they noticed the blood supply change during her bone scan last month. The radiologist suspects a discoid meniscus, which is again something that rarely happens to children, let alone children who aren’t even active (since she’s bound to a bed most days). We will be in touch with orthopedics soon to see where to go from here because sadly enough, Abbigail spends most of her days in bed during treatment and for a week after treatment and it still causes her great discomfort and pain even when not in use. Daily Tylenol every 4 hours is all we can do for her right now.

{October 2013} Abbigail has still not regained proper use of her legs and the ability to walk as she once did. Her legs are also causing her extreme pain and she is refusing to get off the couch some days. After discussing it with her oncologist, we are going ahead with a nuclear bone scan to ensure that there is no disease in her bones that could be causing this chronic pain. The scan came back negative for cancerous evidence; however there was something else discovered that could explain the pain thankfully. Our poor little girl can’t even play or enjoy life when the moments allow her because she is always in pain and pain medication doesn’t seem to be working either. There appeared to be a cold spot on the scan that did not show any blood flow, which will be further investigated through MRI in a couple of weeks. It is not urgent, so they are just simply adding her legs to her already scheduled scan of her liver lesion. Hopefully we will have answers soon and a plan for relief for her. She endures too much already.

{NEXT Protocol #5} Abbigail is back on daily steroids until further notice. It has been almost a full year since last November when she tapered off of these steroids completely. There are many things I wished I had done differently throughout this journey, and tapering these steroids from her when we did is one of the biggest ones. Abbigail went downhill quickly as we weaned her body from these OMS fighting drugs. Despite their long-term effects on her body, they were keeping her brain safe and life manageable. We never again, to this day, have seen Abbigail at as good of a state as she was before removing the steroids from her treatment plan. So here we find ourselves, back at square one, with a three and a half year old barely able to hold her own and walk let alone be a kid. We have put her back on high doses of steroids in hopes of soon tapering them as she shows signs of improvement again. While she is on steroids, she will still continue as always with the IVIg infusions monthly and all other medications at home.

{September 2013} Despite the tumour shrinking and her psychological medication, Abbigail is showing many signs of possible OMS relapse. Watching her shake at times, being unbalanced, begin to stumble again, falling frequently and limping more and more since summer’s end is alarming because those are all the initial symptoms of her disease. We worry the tumour is growing again or possibly spreading and pushing on her spine or simply causing her OMS to relapse. She is also experiencing more and more UTI’s which also activate her immune system and unleashes the ever so frightening OMS monster of brain destruction. An urgent MRI is quickly conducted of her head and spine to rule out any new tumours or reasons for her sudden decrease in motor function. Fortunately that MRI came back normal and no new suspicious cancerous activity was found. This can only mean her OMS is relapsing and we need to change her treatments again.

{August 21 2013} It has been 40 days since her chemo started for her liver lesion. It is time to have another MRI and see if the tumour is responding to treatment. The radiologists also took the opportunity to study the tumour on screen since they were unable to obtain a tissue sample during her biopsies. This allowed them to rule out the possibility of a liver tumour not Neuroblastoma, as well as a haemangioma and many other possible tumour types. The MRI report showed that it is more than likely a Neuroblastoma metastatic tumour due to the ruling out of all other possibilities as well as the fact that it has shrunk slightly since starting chemo. We will scan again in 40 more days to see if we are still on the right path.

{August 2013} Psychiatry has started following Abbigail finally and has put her on anti-psychotic medication to hopefully improve her quality of life. The many medications that Abbigail is now on for her OMS symptoms are beginning to take their toll on her little body and she is not required to undergo month ECG tests to ensure the interactions between some essential medications are monitored.
Abbigail is also experiencing many urinary tract infection symptoms and seems to be resistant to antibiotics.

{July 22 2013} As Abbigail completed her first cycle of Neuroblastoma treatment we urgently request to be seen by psychiatry and refused to be discharged from the hospital until Abbigail was assessed and a solution or path forward was given to us. We entered that office in tears, with very little hope left that our daughter would have a quality of life she deserved and we walked out of there with a plan, support and medication to hopefully get Abbigail back on track towards the battle before her.

{July 18 2013} Before starting these high doses of multiple chemos, Abbigail had to have dental surgery to cap, fill and remove many teeth because the steroids, chemos, immunosuppressants and countless meds have created an acidic environment within her mouth and have caused most of her teeth to decay considerably. When a child’s immune system is compromised while undergoing chemotherapy, it is critical to ensure there are no areas in their mouth that can become infected. So today, before starting her first cycle of chemo, she will undergo dental surgery. She now smiles without front teeth! Her first cycle of chemo went fairly well, minimal stomach upset after the first day or two and she slept most of it off, even after returning home. During each cycle, Abbigail will be admitted to the hospital for pre-hydration to protect her organs from the poison, and to be monitored during infusions of her chemos as well as hydration post treatment; usually 3-5 days. Her next cycle will be in 21 days.

{July 4 2013} Abbigail was put under anesthetic once again this morning after leaving Camp trillium Family Camp late last night urgently, at the request of her doctor. They want to have another look at the growth of her new tumour and adjust their plan accordingly. This MRI showed a significant growth again and they have decided to attempt one more biopsy, despite the risks, and hope to get some much needed information on her tumour. Certain biological markers can indicate the type of tumour it is, its aggressiveness and growth rate and potential for recurrence and metastasis. It is their hope that they can properly assess the tumour and ensure her treatments will attack it as necessary.

{June 2013} After two failed biopsies, a review by the tumour board in addition to a consult with doctors at SickKids hospital, the recommendation is to proceed with two rounds of chemotherapy geared at intermediate to high risk Neuroblastoma and if the tumour shrinks after these two cycles, then that will be sufficient evidence of active disease and we will continue with the remaining 6 cycles of chemotherapies.

{June 13 2013} Upon our return from the USA Abbigail had her 3 month follow-up MRI which found liver lesion, which was found in February, however was not of concern up until now because it has grown considerably since then. A biopsy is scheduled to confirm that it is indeed recurrent Neuroblastoma that has spread to her liver. This biopsy will help to develop a treatment plan.

{June 5 2013} Today Abbigail met the doctor who will hopefully bring her some relief from OMS. Dr. Pranzatelli did extensive testing on Abbigail and her bone marrow following the spinal tap that he performed in the OR himself today. His report later concluded that most of the brain damage that has already occurred is likely irreversible, however not unmanageable. He believes that our next course of action should be to give Abbigail daily oral chemo for a year in hopes of suppressing her immune system enough that when it does begin to regenerate, that it will no longer cause attack. Unfortunately, we never got the chance to try this new treatment since her cancer returned in her liver the very day that his report was sent to us back in Canada.

{May 2013} As we are realising that the multiple attempts at treating her OMS are all failing us, we start to make plans to meet the OMS specialist in the USA, Dr. Pranzatelli. We are currently focusing all of our energy on getting passports, funding and government approval to see him as he is currently our last hope for a remission for our darling girl. She is about to celebrate her third birthday in a few days and she hasn’t experienced being a kid yet. She has already missed out on so much since most of her life has been behind hospital crib bars, attached to IV lines and stat monitors. Her birthday will hopefully bring joy and happiness to her and our family as we hope to find a miracle soon in Springfield, Illinois, USA.
Just as we are booking our flights out of the country and budgeting the costs not covered by OHIP, we are given a huge gift of generosity and kindness from complete strangers. A night to remember which brought so much light into our lives and which alleviated a huge financial burden from our family. Thank you to the many who contributed both planning and participating generously at the Benefit for Kisses For Abbigail!

{March 2013} Abbigail endured an other four chemo treatments every Friday this month ending days before Easter! It is sad, but our little girl is rarely around anymore. Instead we have this poor tired but beautiful red head, pulling at the little hair she has left, losing patience with herself, fighting everyone around her and constantly screaming and crying over nothing. It is painful and my heart aches for her on days when you can tell she doesn’t want to get out of bed. This month during a treatment visit we found out Abbigail’s port was displaced and she had to have an IV until we could get the surgeons to go in and remove the old one and put in a new one. Well after many phone calls, she had the surgery March 26th, just in time for her last chemo treatment this round! She is a few weeks from her third birthday and I am afraid she won’t even care. We did the chemo, we did IVIg and steroids this month, now we wait again…but for how long this time?! I am trying to be optimistic, but my heart aches and I’m tired and I can’t help but wonder when the other shoe will drop.

{NEXT Protocol #4} Much of the same, we are simply re-doing the chemotherapy treatment that was supposed to be in her system for 6 months. Hoping that an other shock to her immune system will stop it from creating havoc on her brain. She will continue the IVIg and steroids pulses as before and four more weekly rounds of chemo in March, ending Easter weekend!

{February 2013} ONE YEAR ALREADY! Where has the time gone? This was the longest year of our lives…Abbigail has seen a slight decline in her improvement, we saw a jump in her speech and motor skills and her behaviour and temperament slightly improved last month, however now we are seeing daily decline again. She had her last regular MRI scan, one year ago we found the tumour, now we are NED!!! Despite the good news, OMS brings us down again with a complete relapse eposide. Just as in November, we see a rageful little girl tired of fighting with herself. Frustrated, tired, irritable, unconsolable, either crying in my arms or screaming at my feet, she is a mess!!! She will have one good day followed by 6 bad and it seems to only be getting worse. She is back to getting up a lot at night and naps are crazy, some days she sleeps two 3 hour naps and other days she is so all over the place she can’t sleep, even with a sleep aid. Change treatment again!

{January 2013} WOW! This looks like a sliver of our little girl coming back! She is getting her life back, enjoying activities she once loved and fewer attacks and fits. The irritability hasn’t completely gone away, but she isn’t biting herself as much, she isn’t crying as much and her temperament has improved. Sleeping is still difficult, we have to provide her some relief with a sleeping aid and she still gets up frequently, but not nearly as much! We are hopeful again.

{December 2012} Abbigail endured a lot this month! She is still fighting a lot inside and out and her attacks are out of control. Now she isn’t sleeping much at night, up every hour or two, sometimes more than a dozens times throughout the night. She is exhausted mentally and physically and we are about to inject more chemo into her system. The difference is, this time the chemo is stronger and will stay in her system for 6 months, killing all signs of her lymphocytes, leaving her vulnerable and in a bubble for Christmas. Every Wednesday we go to CHEO for 8 am and do not leave until 5 sometimes 6 pm. Abbigail is not aloud to leave the room, so it is a long day for everyone. She and I make a great team, we play silly games, watch funny videos on youtube and play with the nurses. We made it through the month, or so we thought, when she gets sick. A fever on Christmas morning has us rushing to open present, put the turkey in the oven and race to CHEO ER for an assessment, blood work and cultures for infections. Her last chemo treatment was on January 3rd and she did her IVIg as scheduled and her steroid pulses as well. Now we wait…

{NEXT Protocol #3} Always continuing with IVIg every 4 weeks, and now we were also maintaining the steroid pulses that seem to keep her acute symptoms (motor functions) at a baseline, but now we were adding in a new chemotherapy treatment. This chemo was not approved for use in OMS patients in Canada and was not covered by OHIP or our insurances, no matter how much we pleaded, and the costs were astronomical (aren’t all life saving meds). We were blessed and our oncologist and pharmacist at CHEO worked day and night for three days to get assistance to pay for these treatments because we needed four of them, once a week for four weeks. This was supposed to give us six months of relief from OMS and bring Abbigail’s symptoms to a level that we would be able to taper the steroids and slowly wean her off the IVIg and kick her into remission.

{November 2012} Abbigail developed sever rashing on her face, around her lips, nose and eyes. Many dermatology clinic visits later, we were given a cream with a black label warning that it may cause cancers! Ya no thanks! I let the rash ride itself out as it was a type of reaction to the lack of steroids now in her body. Almost a withdrawal from them you could say. It took a couple months, but it didn’t bother her any so it didn’t bother us and eventually cleared itself up as her body adjusted to the new doses. These were some of the toughest, darkest and saddest days our families life. This month brought out feelings in me about cancer and God and questions that I didn’t really want answers to. Abbigail’s walking is much better than it was in late summer early fall since we started the pulse steroid treatment, however she now has these absolutely insane attacks of rage and irritability like I have never seen or experienced. This was nothing any other momcologist could recall in their chemo and steroid pumped child. It was sheer insanity! She would scream for sometimes an hour and not remember what was it that made her upset in the first place. She couldn’t be consoled, we used to be able t bribe her with candy but not anymore. This was not our daughter!!! It was enraging for us, as her parents, to watch her have to endure. The frustration level in this household was at a breaking point and after only a 4 weeks on this treatment plan, we called it quits and moved on to an other one. With the help of a doctor in the States with OMS experience, we devised a new protocol together.

{NEXT Protocol #2} Abbigail would continue her IVIg every 28 days however instead of daily steroids, we would try what is called pulse treatment which is very high high dose steroids for a certain amount of days each month. Her one adrenal glad has been sleeping for 8 months now since she was on daily steroids, so to avoid life threatening heart failure, we have to maintain a level of Cortisol in her system, which meant an other twice daily oral medication at home and an emergency plan for stress dosing. So she would take these steroids for three days every 28 days, and then two weeks later, IVIg, also every 28 days. Hoping that this would curb the steroid taper issues and keep her immune system at baseline.

{October 2012} I am heartbroken and Abbigail is exhausted. She is still hasn’t learned more than a few new words, more like new sounds not even words, and she is unbalanced, uncoordinated, her quality of life diminishing by the day as she fights with herself and now us. The once pleasant joyful blue eyed baby girl is now a falling, crying, screaming, biting rageful young two year old. She is hurting us, her brothers and herself. She can’t go a minute without me or she breaks down completely, there are days that she cries for 10 hours and other days she sleeps for 20 hours. She doesn’t have the same appetite as she once had and she is losing weight. She weighs almost an entire kg less than she did last Christmas at the doctors! I have been writing Abbigail’s behaviour, temperament, motor skills and tracking them on an OMS scoring sheet for months now, I see the patterns and I am worried. We meet with our now primary oncologist (whom we adore and more importantly trust!) and I bring to her all of my research, the dozen research papers I read, the studies conducted around the globe and the name of a OMS guru in the states. I show her my concerns, Abbigail’s charts and calendarized symptoms and tell her we need to do something immediately. She saw the determination and fear in my eyes. She promised me a plan by the end of that week, and within a few days we were back and started her new treatment.

{August & September 2012} We kept up the daily regular dose of steroids up until this point, when we were encouraged to try tapering again, I was very reluctant and quite stern with the oncologist that day, however after much contemplation and their assurance, we went ahead with a very slow, almost minute taper of steroids only every 4th dose was diminished by only 25% the first two weeks and then we would gradually over a two month period get to where we wanted to be in the treatment plan. What most would taper in a week we planned to do in months. After only two weeks of barely tapering anything, Abbigail relapses again, having more symptoms reappear than the last time we attempted to taper the steroids. Here we are 8 months into treatment, at the tapering phase, and back to square one with her OMS symptoms.

{July 2012} We began to taper the steroid aggressively and there were no more chemotherapy treatments in her plan. Abbigail was responding well up until this point. Only days after we removed some her steroid treatments did she begin to deteriorate. She was very ataxic (shaking full body all the time), she was back to being clumsy as in February before diagnosis, and her eye movements began to reappear. We grew concerned and more worried as each day passed. Her team felt that it was the steroids that were keeping her symptoms and thus further brain damage at bay, therefore we returned to daily full dose steroids as before and hoped for her to return to the girl we saw only weeks prior. That was not the case, Abbigail has never returned to that girl.

{May & June 2012} Abbigail and I went to CHEO weekly for blood work and an assessment by her oncology team. We stayed overnight at Ronald McDonald and CHEO for two nights while she received her chemo and IVIg treatments once a month and she had an MRI and Ultrasound to ensure that none of those hideous cancer cells were growing back. No evidence of disease (NED)! We saw amazing leaps of improvement, her acute symptoms were coming along and we saw daily strides. She was now able to walk on her own, carefully and sometimes very wobbly, almost like that of a 12 month old just learning to awkwardly walk. She still had no new words to share with us and eating on her own was still quite challenging but we were optomistic.

{April 2012} Abbigail wasn’t able to withstand any more pokes, her veins had been tortured over the last two months and it was time to have a semi-permanant line inserted. She had her surgery to insert this portacath! What a relief!

{Her OMS Protocol} She was to receive daily oral steroids, IVIg infusions and chemotherapy every 28 days (inpatient 2 days) in addition to the medications used to curb the side effects of this treatments and antibiotics on weekends to prevent pneumonia. This was to last 6 months, however the steroid dosage would slowly begin to taper after only two months. At the six month point, we were to only do IVIg every two months and continue to further taper the steroids. During months 9, 10, 11 and 12 we were to be nearing the end of treatment and thoughts of a neurological remission. We were under the naive and uneducated impressions that our daughter would be “normal” after this 12 month treatment plan they presented us. We had no idea the life we just embarked on or the toll this was about to take on our precious baby.

{March 9 2012} Abbigail’s first chemotherapy treatment. We started all of her medical and treatments before we left CHEO that following Monday after three long eternal weeks. Abbigail was still not walking on her own, she was barely able to crawl or sit last week, but has now since been able to take a step or two on her own, she has learned to “fall down” without hurting herself and knows to brace herself as she walks along walls, holding bikes or our hands.

{March 5 2012} Abbigail’s tumour was successfully removed with her left adrenal gland too!!! No further cancer treatment necessary!!!

{February 21 – March 12 2012} Abbigail was tested, diagnosed and began treatment. We only learned of the OMS once they removed the tumour and the doctor felt he could shock us again with more devastating news! Abbigail underwent her first two treatments before we even knew about the OMS, we were under the impression that it was simply to help with her symptoms because at that point the cause was still unknown as to why she was losing motor functioning. We stayed in that same hospital room for 21 days, had many roommates, experienced the life of isolation (no roommate, door closed at all times, no one comes in or goes out) went through more than any parent expects to in a lifetime for their child or themselves.

{February 23 2012} After a long day of more testing and doctor appointments in every clinic in that hospital, Abbigail and I were alone eating our diner while Matthew went home to pick up William for the weekend. Our diner was almost done and she was sitting in a highchair, unable to sit on her own anymore without falling over, and the paediatrician we had come to trust over the last two days of hell, introduces the man she walked in with as one of the oncologists on duty at CHEO. At that moment his name could have been big bird and I wouldn’t have flinched because at the moment I stared into my daughter’s glowing and joyful eyes and I didn’t hear a word the team of doctors was saying. After I paused a moment, I tried to speak and the words didn’t come out, I turned to the tissue box but couldn’t lift my arm to get it. I knew the tears were about to roll and the snot was about to pour out of my nose as I sobbed on these strangers shoulders but I couldn’t do anything to stop it or hide it. I took a moment and listened to him tell me our baby girl had a tumour on her adrenal gland and kidney and it was called Neuroblastoma. Once I listened, and they left it was like something in me changed. I continued to stare at Abbigail and when my family walked in, Matthew said he knew. He looked over on my well written and diligently outlined white board and saw “Dr Shake – oncology” and I calmly told him the facts I remembered and that was it. After Abbigail was asleep and he put William to bed at the hotel on site, he returned to talk and I couldn’t tell you more because I can’t remember. The blur starts here…thankful for my journal and my iPad because facts quickly became clouded by tears, fears and shock. This was the day my daughter was robbed and our family began this journey together.

{February 21 2012} The next morning I notice all of the bald children, I see the “toxic” symbols on some of the doors and IV bags hanging from the pole….but it doesn’t click yet. I still don’t put the two together, that doctors honestly think my daughter has cancer. I mean common right, you can clearly see that you are on the floor full of oncology patients, you hear the other parents talking about cancer this and chemo that all day beside you, but no your child doesn’t have cancer, that only happens to other kids, not ours. Abbigail hasn’t eaten a meal since Sunday {2 full days} before she split her lip and hasn’t snacked since the afternoon before, she is cranky and tired because who can sleep in a room with strangers poking you all night to re-insert the IV that fell out twice, to take your blood pressure every hour and temperature too. My baby girl wasn’t supposed to be here, in that bed, so pale and scared looking. She didn’t care once the sun was up though, she saw ride-on cars, kids her age, toys to no end and mommy and daddy by her side. She was strong through the moments I could barely keep it together. She endured MRIs, scans upon scans, X-rays and nuclear dye injected into her body for days…she had more IVs in those days than I had all my life. All these tests and all these questions we answered over and over again, every doctored discipline in the hospital was in to see Abbigail and the great mystery that she was….until the test results returned.

{February 20 2012} Abbigail and I see our family practitioner in Deep River and he does a complete work up on her and comes up empty handed but nonetheless worried. My heart sinks a little deeper when he suggests I either see the more experienced doctor in the ER immediately (what no wait time!) or that I call my husband, make arrangement for William and head to CHEO for further investigation. I was already in the building with familiar faces, I walked down the hall to the ER and didn’t wait more than 30 seconds before they whisked Abbigail into a room and began to ask me the same questions the ER did the night before and our doctor did only an hour prior. After the interrogation, and an other thorough but duplicate exam, still nothing but concerned eyes and quivering voices urging me to present Abbigail at the CHEO ER in no more than 3 hours. The doctor wrote a three page “note” to which I couldn’t read at all, that we took with us. We made arrangements and were at CHEO with that letter in hand and although that place was packed, we didn’t wait more than 25 minutes before we were in a room seeing many, and I mean many disciplined doctors. Did I mention this was Family Day in Ontario. We repeated our story and her symptoms and the last four months of her life to a neurologist, paediatrician, their students and too many nurses that night in the ER, only to do it all over again for two more full days. Each doctor agreed there was a problem, but all failed to tell us “what they thought was wrong,” until the last doctor came in and told us we were going to look for either epilepsy or a brain tumour tomorrow morning and that we should plan on being in patient for at least a week until we can get all the tests run. WHAT? EPILEPSY? BRAIN TUMOUR? SHE IS TWO! Ok breath, they are just being over cautious right! By the time we get upstairs to our room and the doctors finally leave us alone to sleep, Matthew can’t stay so my poor husband is exhausted and scared and alone in his car because he is too cheap to pay for a hotel and too stubborn to call my family.

{February 19 2012} Abbigail receives stitches and a request to see a doctor no later than the next morning with her presented symptoms of falling, uncoordination and rapid eye movement. My heart gets heavier as I realize this isn’t an ear infection or clumsy toddler.

{February 2012} The week preceding the wedding, although Abbigail was free of her cold symptoms and had been free of a fever for numerous days, she had become alarmingly violent with her brother and the other young boys at daycare. She was also exhibiting these rageful attacks like we have never seen before. We have seen her upset, but never like this. Only once before this did she scream, hold her breath in protest and pass out on me – all because she was a greedy 12 month old upset that I took her soggy pizza out of her mouth as it was threatening to choke her. Now she seemed to have these fits more than once a day with Matthew and I at home and on occasion with the sitter and the kids in her care. The daycare woman, whom we and the kids called “Grandma Lynn,” began seeing what I was seeing for months now, that Abbigail would be very “shaky” and tremorous when she would awake from her naps. For a few weeks now I had been noticing that Abbigail’s eyes would do a funny dance in their sockets at any given time and she didn’t seem to be bothered by it, not like an eye twitch or a focusing issue. She would just be going about her business or staring into space and her eyes would move from side to side then up and down all over the place. Increasingly I began seeing this kind of eye movement regularly, sometimes upwards of 15 times a day come mid-February. Looking back, I must have been crazy not to worry, but I didn’t, our eyes move around all the time right. Then the days before the wedding, I remember telling Matthew as we packed up to make the trip to North Bay for the festivities, that Abbigail is clumsy as we watched her become, uncoordinated and almost off balance-like. Since I had just returned from the doctors with the kids only a couple weeks ago, I figured she was recovering from her string of cold and flus and maybe got an inner ear infection and was causing her imbalance. Increasingly over the next few days we watched our little girl bump her head more times than a newly walking baby does. She would walk right into doorways, corners of head-height tables and countertops, she would fall in the middle of an empty room even. It went from clumsy to alarming in only 3 short days. At the wedding rehearsal Friday night Abbigail stumbled down the “aisle” with her big brother, sporting many blue, brown and purple facial bruises, but she made it on her own. I didn’t sleep that night as I remember laying there hearing the voices of everyone telling me that “she is just being clumsy”, that “all toddlers go through that phase” and that “maybe she just has an ear infection,” and that all I could think to myself is that this feeling in the pit of my stomach is screaming that there is something wrong. That next morning Abbigail fell numerous more times at my parent’s place where we were staying and by the time we got to the wedding hall that afternoon, Abbigail could not walk down the aisle on her own. She had both me and her big brother help her make it to the end. The rest of the evening the kids enjoyed the dancing and being the centre of attention! I wouldn’t let Abbigail walk alone, too many tables and chairs to bang into and too many cords and table clothes to trip on; which would not have been an issue a mere two weeks ago as she had been walking on her own for almost 12 months now. Clumsy but smiling, Abbigail and William danced in the middle of the dance floor, free from wires and pointed tables for hours! We travelled home the next day and dropped our bags at the door and made diner only to rush to the emerge a few hours later when Abbigail continuously fell over her own two feet. Her legs no longer did what her brain was telling them to do. She fell right on a toy chest and split her lip open. This is where her story begins…

{Winter 2011/2012} Abbigail began to show an increased irritability that she never had before. She was always a very happy little girl, with nothing much to be upset about. Her irritability appeared to be the start of what some call “terrible twos.” I also noticed, no one else seemed to, that she was shaking a lot now, she would tremble at the hand when doing tasks and her body would tremble when she awoke from her naps and in the morning. I told Matthew and he began noticing too, and we thought maybe she was low on sugar or needed iron so we started her on a multi-vitamin and told the doctor at our next visit. Abbigail was sick, along with her big brother, much of the winter but in late January and early February the two kids were seen by our family medical team because I worried they were not getting better as it had been more than weeks that they were up and down, William missed almost two weeks of school because of it and I rarely let him stay home from school. We were told to keep them hydrated and that it was just a string of cold and flus that they keep getting since this was their first winter exposed to so many germs as William had just entered kindergarden. Along we went and they both improved by mid February, just in time for Derik and Bridgette (my cousins) wedding, which Abbigail and William were the Flower Girl and Ring Bearer.

…always being updated by Mama, please come back for new details.

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