May her mountains be beautiful!

…and so the journey continues; climbing mountains, falling off cliffs, reaching for the stars.

Abbigail’s bone scan last week returned positive. The bony structure within the right ala of her pelvis lit up like a Christmas tree, correlating precisely with what was seen on her MRI images of July 15th (see recent posts since MRI). What does it mean? It means just that. Nothing more, nothing less. It barely moves us forward at all. But it’s official, I am now pronouncing it so. Abbigail is an enigma. The truth, of course, is that neuroblastoma is such a complex, multi-dimensional disease that there are children like Abbigail for whom modern medicine just doesn’t have any answers at present. Relatively speaking there is so much that is still unknown about what neuroblastoma really is, and how/why it behaves like it does.

With these results though, the ‘plan’ has an additional, hitherto unmentioned, element; a core biopsy. She’s had pretty much every scan and diagnostic test going, and has gone through multiple biopsies and aspirations in the past, I’m sure she’ll hardly noticed if we slip one more into the schedule.

So, I sit here alone, on a cold couch, in the dark waiting. Waiting for something to wake me, to end this scary road and show me the light again to a place where our daughter no longer feels pains from needles, chemos and cancers, where she can ride a bike and fall off, skinning her knees for band aids instead. Waiting for my heart to mend after it’s been broken too many times over. Waiting for the fear to stop invading my every thought and decision. Waiting to hear someone say she’s free. I’m waiting to hold my daughter as she wakes from her sedation today. She went in for her biopsy a couple hours ago, with a smile on her face as she fell asleep in my arms. She will wake hopefully and the interventional radiologist will come out confident he retrieved enough bone and marrow to provide answers and that our baby girl was unscathed through the procedure. The wait won’t be over though, not for us as her parents, family and team of doctors. Then we wait for results from the lab. Agonizing at best. Gut wrenching most hours, soothed by her laughter and the love she has for life but nonetheless painful and frightening. We pray it will come back negetive, proving once again that Abbigail doesn’t follow the norm or any precedents…we pray for the day when there is a small amount of certainty again in where we are headed with her treatments.  Please keep Abbigail in your thoughts and I know how much love is here for her! Let’s show her that love and share her beautiful smile with the world.

One final thing that is definitely worth mentioning, and that to my discredit I could easily have omitted. The medical teams who have worked closely with Abbigail over the last two and a half years at the Children’s Hospital of Eastern Ontario have been incredibly supportive of what we are trying to do in terms of getting the absolute best treatment for Abbigail. At various points over the last few weeks and months the simplest option by far would’ve been to turn around and ‘encourage’ us to take Abbigail elsewhere. Instead, her oncology team, and in main part her oncologist, has remained very active, talking to doctors in other cities, provinces and countries, facilitating the various additional procedures needed for her OMS away from home, working day and night to find the answers that aren’t always there. My feeling is very much that at the end of this period we will know as much as we ever could about what is going on inside Abbigail. The unfortunate thing is despite everything we have done, and are doing, there’s still not actually very much we can say for sure, and the future remains as uncertain as ever. Of course there have been times when I haven’t been completely happy with her care; I was recently very frustrated over the hospital’s “slow down” policy and the resulting difficulties arranging her scans and biopsies for this possible “relapse” and I’ve challenged the doctors, offered opinions, made suggestions, and asked some difficult questions (plus a fair few stupid ones as well). And at no time have I heard discouraging noises, or felt like I was being talked down to, or told what to do. It’s a very welcome contrast to some of the stories that I’ve heard from other parents going through this rare journey with OMS and neuroblastoma. Maybe I’ve just been lucky, maybe sometimes I see through rose-tinted spectacles, or maybe the times they are a-changin’. I believe in my heart that Abbigail’s team loves her, from her oncologist and case manager, to the team in radiology who have seen her and cared for her more than 100 times all the way to the nurses in MDU and the administration who are first to greet her everyday. They all have a special place for her in their heart and that is irreplaceable and priceless.

Abbigail you will never climb alone and once we get you to the top you will hold the stars in your hands and shine among the brightest. I believe!

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…

Clear. As. Mud.

So many of you that have been closely and wholeheartedly following already know that Abbigail had an MRI last week that was supposed to simply show stability within her little body and her liver tumour. Instead we face more heartbreak, frustration and fear as it showed concerning and suspicious new activity within the marrow of her pelvis. Quickly an MIBG scan was scheduled, the radioactive iodine-123 was ordered and our worries heightened, stomachs turned and hearts sank AGAIN as we waited…waited for the scan itself And then waited for results.

Well, the MIBG report came back clear with no abnormal uptake of the radiotracer was detected anywhere. But what does that really mean? And how does it affect our thinking and plans going forward? The first thing to say is it didn’t entirely surprise me that the scan came back “clear.” Her last tumour (still present within her liver) investigated by MIBG didn’t positively light up on screen with MIBG uptake either. Today’s report is definitely a positive result, the best we could have hoped for; but at the same time (unfortunately) it’s neither remarkable nor game-changing. We still have these MRI images showing metastastic action in her pelvis, her liver is still home to a lesion and her body hasn’t been performing or acting in a way that would mirror a healthy child – something isn’t right and I promised my baby girl 2.5 years ago that I would never doubt my instincts again.

To help you understand our concern still, I will quickly explain that one of the many scans that Abbigail has been having regularly for the past 2.5 years is called an MIBG scan (meta-iodobenzylguanidine). This substance is usually picked up by receptors on the surface of neuroblastoma cells. For scanning purposes it has a radioactive tracer attached to it (usually radioiodine I-123) that can be detected by imaging equipment. It is probably the most specific, most accurate and most widely used of all diagnostic techniques for detecting neuroblastoma. Of course, like almost everything else it’s not infallible. Some children present with non-MIBG avid disease, or their neuroblastoma mutates to become such. Abbigail’s primary tumour, discovered within her left adrenal gland in February 2012, was MIBG-avid, however her liver lesion, discovered in February 2013, a full year post frontline treatment, was surprisingly not MIBG-avid, such as this recent highly suspicious sacral bright spot within her pelvis, which means perhaps Abbigail’s recent tumours are among the rare 10% of neuroblastomas that do not pick up the MIBG substance. Does this mean that her cancer has mutated? Is her neuroblastoma changing over the years?

Abbigail still has a lot of disease, her liver and pelvis are riddled with lesions and abnormal cells, as evidenced by various multiple scans. However, there is currently little evidence to show the activity within her pelvis, as evidenced by her recent MIBG scan. So now what? Do we allow a biopsy, PET scan or further treatment? The result of Tuesday’s MIBG scan is good I guess, but mainly because it would have been worse if there had been significant uptake on it, but as it stands, we can still hope and pray that this monster isn’t hiding elsewhere and until we investigate further nothing or no one can take that hope from us.

I said earlier that I wasn’t surprised by the latest scan results. Although I didn’t necessarily expect the scan to be completely clear, I didn’t expect there to be significant uptake either (although it’s always impossible not to worry that something nasty is going to show up). My thinking was that Abbigail has had stable disease for the best part of SIX months now. If she’s got stable disease, it either means treatment has holding it at bay, or the cancer itself hasn’t been doing a whole lot. Reflecting on what treatments she’s had in the last couple years, I think her disease was in some form of hibernation. Maybe the multiple chemotherapies she had last year did enough to either slow the progression, maybe even stop the dividing of her liver tumour NB cells, but not enough to destroy any persistent undetected cells – Abbigail’s scan results aren’t consistent with responses that have been seen in some other children. We can only speculate because we can not monitor if they are not MIBG-avid, so at what point did her disease first became active again will forever remain a mystery, maybe it was never inactive at all and she has been fighting inside since that dark day in February 2012.

I’d love to believe that her NB has all matured, that the cells have divided as many times as they are going to divide, and that things are now just going to remain in this state, with no further surprises or undetected cells. But truthfully, deep-down inside, I don’t believe that for one minute. Maybe one day…but not today!

Even if I did believe it, consider this; the majority of children with neuroblastoma do achieve a first remission, their scans show no evidence of disease (NED), and yet of these children somewhere between 40% and 60% go on to relapse, the neuroblastoma comes back. Despite all the intense, destructive, super-toxic, treatments these children are given, residual disease still remains at the end of it. Too small to be detected using current imaging techniques, even the most neuroblastoma specific, the MIBG scan. Yet eventually this residual disease grows and multiplies to become a full-blown observable tumour, and relapse happens. If a child who shows NED has minimal residual disease that can’t be seen, in my own mind I have already decided that Abbigail has other areas of disease, not showing on any of her scans, but which nonetheless are active and which will, given time, result in new tumours forming. So we have to think about this, as well as what does currently show up on her scans today; the pelvis and liver disease. It’s why we put her through chemotherapy and soon a treacherous transplant. It’s why we are considering all sorts of treatments, such as cis-retinoic acid, a super high-dose of a vitamin A derivative, which has been shown to cause differentiation in neuroblastoma cells, turning them into mature cells that will no longer sub-divide. It’s why we’ve extensively researched our next move. Seeking at possibly getting Abbigail some form of immunotherapy, the antibody treatment that has proved to be a major breakthrough in the fight to prevent relapse in neuroblastoma patients. We know the harsh reality of this type of cancer, we understand the odds and despite all of our hope and faith, we can’t ignore what is right in front of us!

Abbigail will be back at the CHEO for her OMS treatment this week, at which point we will discuss in depth with her oncologist about our next investigative approach and possible treatments. Her amazing team at CHEO will be in discussion this week, so please pray they have answers for us. Until then, together we will face our reality here and continue on living life! All the while holding our breath, but never losing hope!

And so there you have it. I know my updates are becoming ever more complicated…but then so is the situation we find ourselves in.

Thank you for reading, sharing and praying as we struggle through this unpaved path.

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“There will be a day”

We began this journey 15 months ago. Full of questions, fears and sadness, we took it one day at a time, one procedure and one treatment at a time, looking forward to the end of the 12 month long protocol {treatment plan} when we could go back to being a family without cancer and hospitals. If you do the math, we are three months past that date and here we are looking into our sleeping daughter’s room as she tries to dream of princesses and ponies, painfully discussing the next steps to bring our daughter back to health. This journey didn’t get easier, the days don’t go by without pain and sadness, and my sweet little baby girl is getting tired. All those months ago, Abbigail was just a little baby, not even two years old and now we countdown the few days left before she turns three and we are no closer to helping our little girl than we were 15 months ago.

I too am tired and looking back on all of the pain I let them put her through, all of the procedures, cuts and needles that were necessary and all of the poison pumped through her tender body makes me ache more than any mother could imagine, more than anyone will ever know unless they walked in my shoes. Tonight, I can’t do it. I won’t recount her journey, I won’t revisit those endless days and nights I watched her lay limp and lifeless as they put her through hell time and time again. I hope my sadness doesn’t cloud my writing, please bare with me.

Abbigail completed her 2nd course of chemotherapy on March 28th; weekly treatments of 6 hours for 4 weeks, just in time for Easter. We were hopeful. She was tired over Easter weekend but that was expected as she was also undergoing home treatment {pulses of steroids} that same weekend. The following week was so encouraging, uplifting and we thought for a few days that we might have finally found the perfect cocktail of poisonous drugs to help our daughter be”normal.” You see with OMS, you undergo many treatments for many years {average of 7 years of intense and active treatment} before a baseline or remission is reached. Remissions for OMS children are short lived, with relapses lurking at every corner, with every cold, flu or virus floating in the air of schools, birthday parties and public places. We now know all of this, we now know that the 12 month plan we were given 15 months ago was just an unrealistic “hope” our oncologist at the time felt we needed to hear to make it to the next day, the next hour. So here we are now, a week or two after our last chemo and we see improvements, not great leaps or huge successes, but little improvements that give us hope. She doesn’t scream all day, she sleeps longer, she didn’t fight with herself as much, her brother’s weren’t being attacked, and she wasn’t as wobbly or clumsy as she had been in the past months. Abbigail really gave herself and us a few good days where we thought she was beating the odds. Then the painful reality hit again as I watched my baby girl flip like a switch in the matter of days. This time was different than all the past “relapses” {I use the term relapses lightly as she has yet to reach a neurological remission, so she technically doesn’t relapse}, this time Abbigail was showing all the signs and symptoms of her initial presentation before diagnosis. She began stumbling a bit more than usual, stomping as she ran and fumbling into doors, walls, tables and toys as if she were unbalanced again. Her moods, behaviours and cognitive abilities began to decline; screaming almost all day, easily getting irritated and quickly getting frustrated, her words she used last week were not mumbles and sometimes lump sounds making no sense. Abbigail isn’t always showing acute OMS symptoms, she makes short visits to family and friends, can manage an outing to the grocery store with minor disturbances {similar to that of a spoiled toddler and an incompetent mother} but without notice and without prejudice, an attack occurs and she smacks a fellow playmate, pushes a child walking in the store or bites herself until she breaks the skin as she screams in a fit of rage. Abbigail now, more than ever before in this journey, requires supervision and management 24 hours a day. As her mama I call it “24 hours of undivided attention and unconditional love.” In the last few days, I’ve experienced many moments that have brought me back to those dreadful days before she was diagnosed, those days when I feared the worst and when I see her eyes dancing again, I am paralyzed in fear as I remember the doctor walking in to tell me my baby had cancer. Our bubbly, adventurous and playful daughter is now lethargic, exhausted, sad, depressed-like and most days she is living a very low quality life more hours than not. I have slowly watched my innocent girl be robbed of her days as a toddler, and now we are going to have to hold her hand and explain to her that the fight isn’t over, that she must endure more chemo, more needles, pokes, sedations, tests, procedures and treatments. Treatments that would be lethal to some adults, treatments that compromise her growing body and alter her immune system not yet matured in ways that will affect her for the rest of her life. So Abbigail’s last 15 months of treatments didn’t work. The chemotherapy we had such high hopes for only weeks ago has let us down. We are back at square one, with no more treatment options left in Canada.

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I received the call this week, from Abbigail’s oncologist {whom we absolutely trust and value} and case manager, that she believes in her heart that we have hit a wall here. We have tried all of the treatment options offered in Canada and they have all failed our daughter. This journey will now take us all the way to Springfield, Illinois, USA to meet the infamous Dr. Pranzatelli, the founder of the National Pediatric Myoclonus Centre (NPMC). This is the only centre of its kind in the entire world and he is the only doctor who has treated and consulted on 120 patients worldwide in his carrier. An oncologist could only dream of ever hearing or even seeing an OMS patient, let alone treating one in their carrier and he has helped hundreds reach their baseline functions after all of the damage OMS caused their brains, bodies and lives. We are hopeful, excited and anxious…we are fearful, saddened and anxious. This life, this world we live in now is full of it’s ups and downs and we take them all with the knowledge now that each moment, regardless of their nature, are precious and a gift. After a rough morning, holding my daughter tightly so she doesn’t hurt herself, or cuddling for hours because she can’t muster the energy to simply play, I see tiny moments of joy and happiness in her eyes and I capture them in my mind {and camera lol} and focus on them when the next wave of symptoms comes roaring in our lives.

With all this said, the next chapter in healing our daughter takes us to Illinois. We have no idea what is there, we have no clue what to expect and we have very little details as to what sort of procedures and treatments are in store for Abbigail, but we are going to take it one day at a time as our life now implies, we are going to fight together as a family, and we will continue to hope that there will be a day with no more tears, no more pain and no more fears.

July 23 2011 {always by each other's side}
July 23 2011
{always by each other’s side}

Her Journey Continues…

Who's sick? This girl is a firecracker! {3 weeks in hospital - February/March 2012}
Who’s sick? This girl is a firecracker! {3 weeks in hospital – February/March 2012}

No evidence of disease…what does that mean? Simply put, in Abbigail’s case, at the time of the scan there was no detectable cancer cells. For that small moment, we could breath…until that moment passed and we were reminded that the next moment could hold a growth spurt for an undetectable cell they maybe missed. Then we held our breath again. For some childhood cancers, these scans are performed numerous times a year and for several years past remission and for others life can begin to simplify again and this scan means the start of something new. Abbigail has had her body scanned every couple months since last February and we continue to receive those quick gasps of air, the difference being that each of those gasps where never of fresh air. Abbigail’s reality is not so simple. Without medically boring you, her tumour was “unfavourable” with many markers that would indicate that if she did not have OMS which led to the early detection of her cancer, she had a high probability of being full of cancer throughout her body by the time we would have “found” her tumour because of its “type” it held the chance of being a tougher battle….which could have taken many more months or even years. This being said, as we know, Abbigail is one in ten million, so everything that the very few articles and studies are saying about Neuroblastoma Cancer and OMS does not seem to be ringing true for Abbigail. Most children with OMS tend to have a lesser evil cancer, Abbigail’s as I mentioned was not the case, and so we continue to fear relapse. So we continue to lose sleep when she gets a tummy ache, thinking the tumour has reared its ugly face again causing her cramps, or that her swollen lymph node under her ear is reason to believe that “IT” has spread. You see, as an oncology parent, nothing is simple anymore, not even after the cancer has left the body. There is no such thing as a simple tummy ache, headache or flu and all fevers tend to become ER visits due to the state the chemotherapy has left our child’s immune system in because as we learn when we become a part of this ever dreaded club, infections and late effects of treatments take our children from us too. We have to think twice about every simple symptom our child complains about or doesn’t, then that fear returns, the heart palpitations take over your body and the anxiety kills you inside. You are brought back to that very day they so simply stated that the innocent baby you are holding has cancer. I do not know how to describe this pain, this ache and gut wrenching feeling to anyone who has not suffered such tragedy. I honestly do not think it is easily explained because even us feeling it do not have the words for it…it is just felt.

I posted a few days ago that Abbigail’s recent MRI scan came back “cancer-free” and as true as that is and as wonderful and as relieving this is to us as her parents, this is not her end. Her scan showing “no evidence of disease” was a hurdle happily beat but this is not even her toughest battle. Abbigail may have fought her battle with cancer last year and as I have written and reminded myself many times, her cancer left her body when they removed her tumour, but she has a long road ahead of her still. That feeling that I explained above that never goes away, that fear felt when your child says their tummy hurts, those are real, true and grand. I feel them everyday as I watch my darling little girl fight with herself. In our home, we do not only fear the cancer returning, we fear her OMS is attacking her brain again and again and we are brought back to that sad day in February when she went from an average toddler to a tragic infant unable to control herbown movements right before our eyes. With each scream my daughter makes, with each abnormal eye movement I witness and every trip or fall, I analyze and wonder if it’s sneaking back up on us again.

Sweet moments are made even in these settings {June 2012 Chemo #4}
Sweet moments are made even in these settings {June 2012 Chemo #4}

Yes, Abbigail was free of evidence of disease on February 25th 2013 at 2pm when they completed her MRI scan of her head, spine and pelvis! Thank you for all of the wonderful wishes and sentiments, we truly are blessed to have such amazing family and friends and even support from strangers, but I feel as though I may have mislead you to believe she has been cured of her illness or that she has beaten the beast that we call OMS. This cancer-caused disease will follow her for her entire life, she will live with the sequelae of not only her current treatments and what they are going to do to her brain and body but she will also live with the constant relapses and life altering conditions that OMS causes. Abbigail may be cancer-free today but she is not free. She will endure months, possibly years of intense treatment before she can reach a neurological remission (simply stop the brain damage), where she will then have to continue to battle the symptoms, because there is no cure and hope that the next cold or flu doesn’t send her back to crawling or slurring words and more intense chemotherapy and immuno-supression.

Daddy Snuggles Melt her Fears Away {Diagnosis}
Daddy Snuggles Melt her Fears Away {Diagnosis}

We are not giving up and we will not let this beat us, but it is not an easy road and it is not easy to watch our baby girl go through the things that she does. I can’t even say out loud some of the things I must give permission to doctors’s to do to my baby girl because it makes me ill – so please do not stop praying for our little girl, she needs you more than even. She fights harder and harder everyday to get through the next and she deserves all of the support we can muster.

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.

She Inspires Me

She is my baby girl, my inspiration & hero
She is my baby girl, my inspiration & hero

Today Abbigail received her IVIg transfusion, a few days late due to the critical timing of her chemo.  Her CBC (complete blood counts) dropped significantly from only four days ago when she was here for round two of chemo, this was expected and necessary however was not expected so early I guess.  I will be honest, nothing is really expected with Abbigail’s treatment and prognosis.  We never know what to expect and we rarely know for sure how she will react to any given treatment.  There are not many case studies, and of the ones that we do have to refer to, Abbigail has already been on their protocol and not responded adequately to stop or even slow down treatment.  It is really frustrating as a mother to have to make all of these decisions and provide all of these details to the oncologists, the burden lays on me to make the “right call” for her life.  This almost sounds ridiculous but true it is.  Of course her doctor knows medicine and cancer treatment and all that non-mom stuff, but when it comes to OMS, there are no blood tests or bone marrow that can be aspirated to see if the disease remains active or not.  Today was a an other reminder of how frustrating this disease is and how much it is hurting us all but Abbigail reminded me that it will not take us down.  We lend ourselves tears and offer our shoulders to one an other when needed, but we also remind each other that we have more in our loving family than cancer, treatments, hospitals and OMS…we have Abbigail!  We have William and Madden and each other.

Fighting
Fighting

This bright star has shown me what it is to love, to fight and to never give up…I will forever hold her high and remind her how inspirational she was and is…always!