DAY -5

There are days I have to tell myself “get through the next five minutes, you can make it through five minutes,” and I did! I have been making it through years of our daughter’s cancer and OMS relapses and treatments…five minutes at a time.

Last night Abbigail and I said farewell to some families we have met and bonded with while staying at the Ronald McDonald House here in Toronto as we walked over to the hospital for her admission. We also had to kiss our family goodbye. Matthew, Nana and our two boys came for a visit this week and it was so great to be together again after two long weeks. As grateful as I am that we had those days with family, last night was quiet, lonely and sad without the commotion, noise and laughter of Abbigail playing with her brothers. Last night was also an anxious night as I sat staring at my girl as she slept peacefully beside me. Today is DAY -5 and that marks the beginning of conditioning treatments preceding the actual transplant of her stem cells.

Abbigail has a way of always making the best of every situation, her innocence hasn’t been completely robbed if her. Her heart is so big and beautiful, it shows on her face as she proudly makes her own thanksgiving apple pie in one of the children’s lounges today. I faithfully pray that these moments of pure joy and innocence continue to shine through the difficult times that lay ahead.

As I type, Abbigail sleeps through the first poisonous dose of chemotherapy, part of her pre-transplant conditioning. When she wakes up, she will likely be sick, miserable and I will have to tell her that an other fight has begun.

Up until now, despite being here for over two weeks now, she hasn’t had to remember the chemos, the pains, the nausea and vommitting. She has enjoyed making new friends and having tea parties with the occasional surgery, ultrasound and poke or procedure. She will quickly and sadly be reminded of her reality when she awakes, possibly ill and they forcibly insert an NG tube, hoping not to induce further throwing up. At that moment I will have made it through the last five minutes and I will move on to the next five…perhaps with a little less energy but never any less love or faith.

Tomorrow will be DAY -4; she will receive more chemo and it should be an uneventful day with only one chemo treatment. Sunday however promises to be difficult as she receives a very powerful immunosuppressant, much like chemo but somehow not as poisonous.

Pray for an other five minutes…that Abbigail too can get through them.

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That moment…

I packed two lunches this morning, zipped up two school bags and excitedly but emotionally photographed you and your big brother under the tree, as I did with him each year. I saw you proudly standing at the end of the driveway with your big brother; waiting for the bus, with a pink lunchbox in hand and a smile so radiant it lit the early morning dew. I anxiously stood outside your classroom, proud you were sitting quietly, attentively and participating as every other child was, all the while still partly saddened you didn’t call out for me. I drove away in tears as I noticed it had been hours I was stationed at your classroom door, and I thought of the years that past too quickly and how far you have come, and how hard you have fought to get to this day…this very moment. The day was long. I stood waiting for the bus to bring my babies home for an hour outside in the rain and wind…but I didn’t feel cold and I wasn’t wet. Finally the bus pulled up to our driveway, after what I felt was at the slowest of speeds possible, and I saw your pride and your excitement as you ran up the driveway; ponytails flailing in the wind and boots splashing in each puddle. You were happy. You were a typical 4 year old who was excited to be a part of something and accepted. Once the excitement settled slightly and you both sat down for dinner, it seemed as though your father and I couldn’t keep up to the stories both you and your brother had to share about your first day of school. You competed for airtime, both rambling about your classmates, rhyming off names and games played at recess. At that moment, we were so happy, so proud and nothing could have brought us down.

Then I woke up. On the couch, 11 at night and the TV playing some infomercial about a new anti-aging remedy. Then I realized we weren’t going to feel those joys, see those smiles or hear those stories. I wasn’t going to be that mom in my dreams.

Instead, I remembered I had to retake your temperature because you were warm and started to show signs of a fever at 9pm when I administered your nightly injection as you slept. Then there I was, trying so desperately to cling on, capture and remember each facial expression, feeling and joy that I had in that dream as I drove to the ER in the middle of the cold, damp night. That dream has been put down, left to the side and may begin to fade now as it comes to a screeching halt, crashing into our reality again. The reality that a fever tonight means that you will be examined and poked several times and for several hours before laying your head to rest as a patient on the oncology ward, because you are neutropenic; you have 0.0 fighter cells left in your immune system, opening the gates wide for bacteria, viruses and fungus to settle in your blood and take every dream you, me or your dad ever could have imagined for you. The fight didn’t end yet.

It is now almost 24 hrs after I awoke from that dream. I am sitting at your bedside, in an isolation room at the end of a brightly decorated but oh so dark hallway in the hospital, watching you lay lethargically, bruised from the overnight battle between neutropenic veins and the need for urgent antibiotics to avoid septic shock, and I see a glimpse of that girl, all dressed in pink with her princess school gear. A glimpse is all it is though, because now you are awake, unable to sit up because you are too week from the poisonous chemos given to save your life, unbalanced, uncoordinated, ataxic rendering you unable to walk, just as the first day we found ourselves in this room. You scream for “dew” which I know means juice and I am reminded that you won’t be sharing school yard stories tonight at the table because you lost your speech 2.5 years ago, before getting a chance to even learn your ABCs and we are in the hospital, far from family and even further from that dream than we were before I fell asleep.

Abbigail will be spending the next few days in the hospital, hooked up and trapped in to protect her fragile body from the many dangers that are outside these walls. Our flight is still booked for Monday, with the faith that our miracle is still within our reach. So now I lay holding my firecracker, praying that her body will begin to produce her own fighter cells and that she may become strong enough to board that plane to Toronto and begin the journey towards healing.

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Abbigail’s New Beginning and Brave Journey to Healing

Last week Abbigail went through more scans and procedures, including a bone biopsy to quantify the recent findings by radiology that suggested further metastasis to her pelvis marrow.

The pathology of this biopsy came back after a painstakingly 7 days of waiting and they believe that there is no evidence of disease within the samples they tested. Her bone marrow aspirates and trephines clear, MIBG showed no uptake, however her bone scan showed abnormal uptake and her MRI clearly shows abnormalities within the questionable area. You might say it’s good news about the biopsy, but I still can’t bring myself to equate questionable evidence of disease, within a body already known to show new disease, which is what it almost always is (even though we keep being told that it might not be), with good news. So instead I think of it as not bad news. I was hoping for not bad news, and it wasn’t bad news. So in that sense you could even say it was good. I can’t help but wonder and worry while I am trying to be grateful because it was clearly stated by radiology that he could not be truly confident in that he retrieved the biopsy samples from the area in question. It was also clearly defined in the pathology report that within the 5 samples studied, only 20% was bone matter and that leaves me nervous and anxious that we are celebrating something irrelevant, but I will chose faith and hope today and chose to be leave that this disease will no longer inhabit my precious girl’s body.

The fact remains though, that this new activity found within her pelvis on several radiological and nuclear scans could potentially affect her eligibility for transplant, never mind what that actually means to have new inoperable lesions in her tiny body. So with hope in our hearts we will push through the next steps in healing and chose only to worry if just cause is presented. We are hoping to have new imaging done in a few weeks, before actual ablation and transplant, to see if the area in question has changed.

After Abbigail’s biopsy, Matthew and I took a quick trip to Toronto to meet with her new Bone Marrow Transplant doctor from SickKids hospital in hopes of securing a date in the immanent future to begin the transplant process and get her chemo underway. This hopeful procedure will bring us to Toronto for numerous months, away from family, friends, work and the comfort of our own home and CHEO, however it may bring us hope, and a new life we never thought possible again!

Although transplant hasn’t yet been scheduled (day 0) for various logistical reasons and due to the complicated case Abbigail is, we have started the lengthy process leading up to Day 0; Abbigail’s New Beginning and Brave Journey to Healing! Monday we will check into the Ronald McDonald House in Ottawa for a quiet family night together before Abbigail is admitted to CHEO the next morning to begin a week of chemotherapy. I will stay there with her as always, hold her when she’s too weak to sit up and carry her when she can’t walk. I will cuddle her and rub her belly when she’s throwing up and nauseous. There’s nothing I wouldn’t do to take her place through these difficult days of treatment; to take away her bone pain from the stem cell stimulants, the nausea from the poisonous life saving treatment, and so many more of the acute and long term side effects she will experience over the next weeks, next months and for many years after.

Abbigail is a firecracker, and she continues to battle through it all with joy, love and bravery. We can’t help but follow her lead. She has grown up so much over the last two and a half years and we look forward to watching her continue to grow and become the girl we always knew she was!

As we travel for treatment, spend countless months away from home, and hold Abbigail’s hand through the most difficult months of her life, please follow for frequent updates as each day will have the potential to change her life. Stem Cell Transplant was not a quick and light decision, it has been over a year to get here. You see, Abbigail will be the second child to go through a transplant of this type for OMS in Canada and third in North America and it currently represents a 50/50 chance for her remission. Her protocol has been carefully mapped out with chemos, steroids, immunosuppressants and numerous immune altering drugs specifically to target OMS and has also been tweaked further to target Abbigail’s stubborn and rare neuroblastoma presentation as an OMS child. Stem Cell Transplant has the potential to be life saving but still holds significant risks for morbidity in many cases and even mortality in as high as 5% of children. This was by far the toughest decision we’ve made to date and although we know there is no cure for OMS, and it could return several times within her lifetime, we have high hopes that this finally treatment will bring her to a better quality of life and allow her to experience more as any other child would.

Your support and prayers are appreciated and truly make a hard day or long night slightly more bearable knowing we are not alone throughout this journey. Thank you from the bottom of our hearts.

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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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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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