Walls, Frustrations & Fears

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

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

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

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

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

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

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

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This is only the beginning

How did the hours turn to days? How did our vibrant little girl get so lost…so quickly. Her moments of joy are becoming shorter and fewer. Her smiles not so radiant and her laughter just a little quieter. She utters only groans and whimpers of pains, exhaustion and discomfort.

We started this path towards her miracle on August 19th with 4 days of some pretty awful and intense chemotherapy to prepare her body for stem cell collection. That cycle of treatment took only a few days to start the feared attack on her cells, healthy or not. We saw her hair quickly fall out within a matter of days, she became neutropenic, febrile and consumed with numerous bacterial and viral infections and she lost a few of her beautiful pounds. We spent more than half of the last month hospitalized, in isolation, far from home and away from the boys. This is only the beginning…

Last week after being discharged from SickKids and CHEO, we travelled back and forth daily for several preparatory appointments and procedures to ensure that Abbigail’s organs, body and system are well enough to withstand the next steps towards that miracle on this journey. After an exhausting week, dozens of pokes, blood draws, nurse injections, scans, office visits and more, Abbigail and family celebrated birthdays and spent some amazing quality time just being together.

Tomorrow there are several critical appointments to be had, one will be surgery to remove her port and replace it with a central venous line which will be used during chemo, transplant and post treatments. This type of line will be a huge change for Abbigail and likely a source of discomfort, frustration and even pain in the coming weeks as she adjusts. She must endure so much…

So the journey continues, with hopes of better days, or fewer difficult ones. Abbigail is stubborn and let’s very little control her. Tomorrow she will awake from surgery and I will hold her and remind her of her beauty, strength and the bright pink body she will then have (sterile cleaner dye) in hopes of catching my breath and maybe even seeing a glimpse of our firecracker’s spirit and that contagious smile before the days turn into months.

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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Growth and strength through pain…

“I have laid my child in a surgeon’s arms, I have slept upright in a hospital chair, I have listened to the beeping of machines and been thankful, I have smiled through the tears and I have found strength where there wasn’t any left. A Mother’s love is the fuel that enables a normal human being to do the impossible.”

Today as I pushed through an other day of deafening silence at work, missing my babies and torturing myself with thoughts of Abbigail facing her fears without me, she was doing just that! Abbigail, accompanied by her daddy and nana, was at CHEO for part one of her MIBG scan* (see below for detailed definition). I’m so proud of how she handled herself, with maturity beyond expectations and immense bravery I’ve never seen in her before. I am quickly becoming aware that my little girl, diagnosed even before becoming a toddler, is no longer that same baby. She gets blood work done without crying or even flinching, she has her port accessed by a large needle with little fuss and no more tears, she can push through a day full of procedures and long treatments and she no longer needs her “mimi” (blankie/soother contraption) attached to her at all times. She is growing up and I am having a difficult time coming to terms with this reality.

While other children her age were learning to talk, count, play and socialize, Abbigail was fighting for her life and relearning most infant motor skills, unable to stand on her own and depending on me for everything, just as an infant would. It wasn’t until recently that she began to step forward developmentally in larger strides and I saw her becoming a kid, outgrowing that “giant baby” persona she has been fighting to grow away from for far too long. This development is just the miracle we had been praying for, it is a small yet triumphant step in the right direction towards OMS remission and I couldn’t be happier that we have been given this ray of hope for our girl, but as her mom, I can’t help but feel a certain aching too. She has needed me for everything, and through everything for so long, that she has naturally become part of my identity and I do not know where to go from here, because she is about to face some of her toughest days thus far, as she prepares for her biggest battle with the monsters that are OMS and cancer. This will be a new battle for me too because I will have to adapt and learn how best to support and help my baby girl…who isn’t a baby anymore. All of the pains and joys have always somehow worked together to propel me through,to be tougher, stronger and to be exactly what my girl needs throughout this journey.

Today Abbigail needed me to get through the day at work so that I could hurry home and she could proudly “communicate” to me about her big brave day at the hospital; where she faced the “big orange door” that hid behind it, Scott, the nuclear medicine man and Colleen, the technician who straps her to the scanner to search for cancer in her not-so-tiny-anymore body. So that is what I did for her today…

“You do not know how strong you are until being strong is your only choice.”

***MIBG (metaiodobenzylguanidine) is a substance that gathers in most neuroblastoma tumors. When MIBG is combined with radioactive iodine (usually I123) and injected into the blood it provides a specific way to identify primary and metastatic (spread) disease and is helpful for locating both bone and soft tissue tumors. Prior to the test, the child will receive an injection (through an I.V. or indwelling catheter) with the I123-MIBG. Scans will be done 24 hours and sometimes again at 48 hours following the injection. Cancerous cells will appear on the scan as bright spots. There are also some normal organs that take up I123-MIBG and appear bright. The patient needs to lie still on a table while the scanner takes picture around the body. An MIBG scan does not hurt, but it may be difficult or uncomfortable for a child to lie still for an hour. Some children may need sedation to be able to relax and lie still for the whole test. Before and after the test, the patient will need to take an oral medication, potassium iodide (SSKI or Lugol’s solution), to protect the thyroid gland from the radioactive iodine that normally would be picked up by that gland.

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After You’ve Heard Those Words

After you’ve heard those words; “your daughter has cancer,” there are many ways it can go and there is really no way to know for sure…this becomes clearer over time.

Diagnosis, active treatment, end of treatment, cancer comes back (recurrence), active treatment again, possible survivorship with ongoing treatment and life-long sequelae, secondary cancers caused by the treatments that saved their life initially or an other recurrence and the cycle starts again and again with very little light some days.

With cancer, all sorts of things can change at any time, for better or for worse. While it would be great to know what to expect, there is no way to predict how anyone will do.

Tuesday Abbigail shared her radiant personality with her MRI nurses for the umpteenth time. This was her regularly scheduled scan to check her abdomen and pelvis to see how her liver tumour is. Last night we received the much anticipated call from her oncologist to let us know the results. We knew the tumour would still be there, but what we were praying for was it’s stability and those prayers were answered. Her liver lesion continues to stay stable with little to no growth or spread. As I received this news, driving with three kids behind me in their seats, I couldn’t help but hear pitty, sadness and disbelief on the other end as she said my name. She explained that the radiologist reported suspicion of metastasized neuroblastoma within the bone marrow of her pelvis. We used to worry about a possible relapse of her cancer, then it did return. Now we may never read an other report that says Abbigail is NED (no evidence of disease) but we come as close as we can each time they scan and report that her liver tumour remains stable. Last night our “normal” changed again.

Today I had to kiss my kids goodbye and tell my baby girl, that for the first time since diagnosis, Mama wouldn’t be there to hold her hand while she got her bloodwork done. I returned to work and it turns out it was harder today on me than on her thankfully. Next week will prove to be much more difficult than I could have ever imagined my return to work being. Due to the recent news of this suspicious lesion in her pelvis area, Abbigail will have to face her biggest fear at CHEO. She will have to do it without Mama for the very first time. This two-day procedure that will be performed next week, called an MIBG scan, involves injecting radioactive dye into her body, which will then be scanned 24hrs later to view any neuroblastoma that may be active in her little body. I walked the halls at work today with one of those “everything is fine” smiles when in reality my world was crumbling before me once again. My baby girl may have to face the innocence robbing disease that childhood cancer is once again and I am petrified at what it will do to her. Mentally I wasn’t at work, I was in a hospital isolation room watching my baby be infused with life saving poison again and I could not understand why life has put me in this office chair and not by her side.

I can’t count how many times today I was asked how I do it? And I heard countless times that “I am strong and amazing.” They want to know how we are all doing, especially Abbigail. It is difficult to relive the daily pain so publicly but honestly if you ask, I’m not strong, or remarkable…I’m a mom. I’m angry. Furious. I have never been so mad in my life at anything as I am at cancer. It messed with the wrong family this time. I recount her journey countless times as I run into people I haven’t seen in a while or others who recognize me and want to know more than the words I share online. I share intimate photos of Abbigail publicly. I open up our journey to strangers. I publicly journal my feelings as a mother who is experiencing the agonizing and ruthless pain cancer inflicted on my baby. No matter how raw and unpolished my words, feelings or photos are at times, I want the world to know who my beautiful Abbigail is; strong, brave, fierce, so loving and one of a kind! These reasons are why I appear strong, and why I share the worst days of my life so publicly.

I have become a different person since February 2012 when I was introduced to the world of childhood cancer in the worst possible way but I never want Abbigail to see anything less than what I pray for and hope for each and every time I beg for mercy. Today I was weak, I cried driving to work, I laughed at jokes I didn’t hear because my mind was clouded with fears for my daughters future…her life. Today I was not brave, I wasn’t strong, but that will not keep me from striving for better tomorrow as I pull away from my waving babies. I must always think positive, never give up hope, praise my children on any sign of improvement, and most importantly of all, never let Abbigail or the boys see me give up. I have become Abby’s crutch during this journey and she will react to my feelings and fears but will also react to my positive thinking.

So tomorrow I will report to work, I will support my husband as he holds our daughter through her fears for the first time alone and I will continue to pray and have faith that Abbigail’s fate extends beyond cancer because after you’ve heard “those words,” your world is never the same again and you realize that the control you once thought you had, never really existed.

The face of cancer today

Today is one more of those heart breaking, fear instilling, life changing days. This morning Abbigail faces an other difficult day as she faces the ever feared anaesthetic gas mask, undergoing an other MRI. We take a look at her liver tumour and surrounding area to see what this dreaded cancer has been doing in her body since January and her last chemo treatment.

Our princess has had some of the most memorable days recently visiting the enchanted disney princess castle, having tea with her favourite princess and having a true princess makeover to be The World of Disney’s honorary princess of the day in Florida however none of these magical moments came without difficulty. Increasing medications, recurrent infections, walking difficulties, more pains and increasing OMS symptoms all have been part of her days too. We hope for some answers this week, some guidance, new plans from the OMS specialists in the USA and we will seek further pain resolution as we see specialists in urology and nephrology.

There are always going to be silver linings and positive outlooks to be had, even in our sometimes dark and lonely fight with cancer but “what cancer can’t do” sometimes misleads outsiders into thinking that after the chemo has run through and the throwing up has stopped, that life returns to normal.

Cancer can break our spirits and cancer does change you! It changed our whole family.

Throughout this long battle we’ve been fortunate to have a strong support system within our family and communities both near and far, but we still struggle to get people to understand our day-to-day life and the difficulties we face. Abbigail is in constant battle with herself, not understanding what is happening to her and why she must endure this suffering and frustrations are heightened as she still remains without speech. Her doctors continue to price the puzzles together as her cancer still hasn’t responded and her OMS continues to progress and change as she grows. Hospital stays, ER visits and unexpected diagnostic procedures are not uncommon in an average month. Multiple CHEO visits weekly is still the norm. Her rare disease has us seeking specialists out of country and travelling which leads to battles with OHIP and insurance companies. Fear, anxiety and worries are constant in our lives, often stealing our breath, haunting our dreams and robbing our simple joys.

Sadly, most people do not want to hear these realities and at certain points we feel our support fading away. Other cancer warriors and their families share this loss and pain but without living through this storm, we can’t assume understanding from others. Some assume that treatment makes you better, that things become OK, that life goes back to “normal.” However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily and in our case, it’s hourly most days. How can others understand what we have to live with everyday?

My blog, my photographs, they show this daily life. They humanize the face of cancer, on the face of our daughter. They show the challenge, difficulty, fear, sadness and loneliness that we face, that Abbigail faces, as she battles these diseases. Most important of all, they show our Love. My post aren’t always grammatically correct, poetic or insightful and my photographs aren’t professional but they are true, real, raw emotion and very true of the day to day life we have had to accept and they give a real face to the word cancer. “They do not define us, but they are us.”

Cancer is in the news daily, and maybe, through these photographs, the next time a cancer patient is asked how he or she is doing, along with listening, the answer will be met with more knowledge, empathy, deeper understanding, sincere caring and heartfelt concern.

We still laugh, love and cherish…maybe even a little harder now that we know what tomorrow could bring but next time we say “we are good” know that it is all relative and your good and ours are different.

Prayers and support are appreciated as we face this terrifying monster today and as Abbigail faces an other of her fears in this world she lives.

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Abundant hope, faith restored & prayers answered

Abbigail is being honoured, supported and ultimately blessed in some of the most amazing and inspiring ways lately! There have been countless amazing people who have offered their support to our family and who have followed along with us as we go through this journey.  There have also been several generous and kind hearts that have gone above and beyond just support, they have taken time out of their lives to fundraise and help our family in big ways and for that we are eternally grateful.  There are also those rare few that truly have changed our lives.

For those of you who do not know, an 11-year old local girl, who was a stranger to our family just a few short months ago, took it upon herself to raise money for Kisses for Abbigail by holding her own fundraisers. She decided that she wanted to shave her head to recognize Abbigail’s fight, honour the children past, present and future who follow similar journey’s with Childhood Cancer and to help us raise much needed awareness. Her goal was to raise $1,000 before she braved the shave, and let me share with you that she has already surpassed that goal and we couldn’t be any more proud of her!

Chanelle’s Brave Shave started out as a huge idea in such a young but immense heart of a kind generous young lady, and now it has become so much more!

She and her family held a bake sale two weeks ago and it was far beyond anyone’s expectations. Everyone who helped went above and beyond and the overwhelming support of those who went out to the event was humbling. Because of the enormous hearts and generous supporters that helped the bake sale be a success, Chanelle and her family were inspired and wanted to do more. They held their annual Snowshoeing Evening at their property this past weekend and invited anyone who wanted to help their cause to join them and make a donation to Chanelle’s Brave Shave and they again fundraised for Kisses For Abbigail with heartwarming success. We can not thank this family enough and have no words to express our gratitude towards this amazing young lady! Chanelle really is a truly wonderful girl with so much heart to share!

Now with her impending big sacrificial head shave fast approaching, I can not help but feel nervous for her! I will be honest, I am not only floored that someone would go such lengths for OUR daughter, but that this is a young lady, of only 11-years old! We can’t imagine how difficult this would be for any woman, let alone a young lady! As Abbigail’s mother, someone who sees children fighting for their lives daily, who has grieved the loss of too many young fighters, this young lady’s sacrifice of her own long locks has not only inspired me, but has touched my broken heart in such a way, that I truly now believe in the power of prayers and the goodness of man kind. Chanelle you have changed me and I think you are going to change the world someday with your inspirational heart.

I hope as you read this, that you too are affected by her humble but immense gesture and that you feel compelled to show your support and make her feel as wonderful, beautiful and amazing as she truly is! On March 7th Chanelle will be shaving her head in front of family, friends and strangers to show her support for Abbigail and her fellow fighters.  She will be doing this I am sure with angst and fear but with strength and love.  Help me show her that she is doing something greater than she even knows or understands.  Please show her your support just as you have all these months for Abbigail because she truly deserves it for what she has done for our family and what she is doing for Abbigail and so many others.  Her brave shave is more than just a fundraiser for Abbigail, it is a true testament of the kindness and selflessness of humanity.  I have never felt comfortable with asking for support, let alone directly asking for financial help but to our family this fundraiser is more than that and we truly want to make Chanelle feel great about her decision and know what a huge impact she is having on our family and our daughter’s medical care.  This is no small feat for a young 11-year old, please help us show her that her sacrifice is priceless.  Donations need not be large, a small donation with a message of encouragement will help her see what an amazing person she is.

By following this link you will not only help Abbigail on her Brave Journey through Childhood Cancer and OMS but you will be showing Chanelle that she isn’t doing this alone!

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We understand that everyone has their own battles and their own financial burdens and we do not expect you to donate, your love, prayers and compassionate support is more than generous and abundantly appreciated, so if you feel you can’t make a contribution to Chanelle’s fundraising efforts, do not feel bad, instead please show her your support for her efforts and grand gesture by leaving her a message of encouragement or if you are local and can, please attend her Brave Shave on March 7th at 3:30pm at the Miramichi Lodge in Pembroke! Imagine her face and her fears melting away when she sees so many supporters.  My dream is to fill the place to capacity to let her know how much we absolutely appreciate what she has done and what she is sacrificing.

Abbigail’s supporters give our family hope with each new comment, message, prayer and donation that we do not necessary wake up with each morning.  Our faith in our community, our friends and our family has become clearer than ever when we see how much love people have for our daughter and with each new compassionate supporter we meet, our prayers for a better future for Abbigail are answered.  You may not come with a cure but you offer Abbigail something just as precious in her life; you offer her courage and strength in knowing that she has never fought a single day alone and that no matter how long her battle may be, she will never be fighting this on her own.  For that eternal gift, we will never have enough words or praise that would do our gratitude justice.