Mannequin Mission – Part One

Contrary to what much of my recent writing implies, it is not always so melancholy around here. Most of our days are actually filled with laughter… How could they not be with the two cutest little superheroes ceaselessly spraying their sunshine around. Beyond their fluorescence, I have another brilliant weapon against the mundane: texting with two of my sisters throughout the day. Our communications are often reduced to sharing the most AWESOME GIFs available from our iPhones. (As we all live in different states, this is a supreme form of communication.)

GIFs are a goldmine for hilarity. I am usually cracking up a few short minutes into our exchanges.

Because of our obviously shared enthusiasm for GIFs, my 16 year old nephew recently asked my sister, Alexis (his mom), “Why do you love GIFs so much?”

Before she could respond, her 14 year old jumped in and responded, “Because they’re old.”

WHAAATTT!??? They’re old!?!?

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Clearly they don’t realize how on we are the cutting edge of hip

They also obviously don’t appreciate the astute genius that it requires to chose the appropriate GIF to summarize a mood.

But I digress…

The other day, my sister, Caitlin told us (via text) about this “gorgeous and immaculate” mansion near her house that is ALWAYS dark except for a brightly lit Christmas tree in a downstairs window AND three (3) fully dressed mannequins in three (3) different upstairs windows. She lives in Sacramento so Alexis asked if it was Dorothea Puente’s house. (Remember her!?) It is not the same house; apparently that house is a spectacle for appreciation on it’s own. This mansion, however, IS nearby to Dorothea’s place but an even more shocking habitation.

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Mannequin Mansions and Serial Killer Museums all within walking distance!?! Sacramento really ups the ante in the creep department! (Just one of the things I love about it.)

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Later on, that same day (which also happened to be Star Wars Day), I was at the mall with Erich, Max and Brooks. We went to eat at Bobby’s Burger Palace but walked past the Bebe store on our way. The store was (is) going out of business and all of the mannequins were on sale!! As this merchandise reminded me on Mannequin Mansion, I quickly snapped a picture and sent it to Alexis and Caitlin.

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At the same time that I laughed and scoffed at the prospect of actually getting one, part of me suddenly really wanted to own a mannequin. It is a life-size doll after-all and I am a little girl who still wants to be a fairy princess (at heart).

Alexis and Caitlin also had similar aspirations for me. Immediately, I began to receive a barrage of substantiation to acquire a model:

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Alexis and Caitlin are incredibly good negotiators… Caitlin is a lawyer after-all and Alexis was the captain of the HIGH SCHOOL DEBATE TEAM…
(Yes, I said, “debate team!”)
(Yes, I said, “captain!”)

I didn’t run out to purchase my dolly immediately because I received some serious disapproval from my more pragmatic husband. Erich was less than thrilled by the idea of owning our very own latex lady

Still, Alexis, Caitlin and I went back and forth over the endless possibilities one can do with a dummy over the next couple days. Alexis and Caitlin even talked themselves into NEEDING special lady friends of their own!

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This mission changed from talking me into purchasing one (1) mannequin to now acquiring THREE (3) MANNEQUINS! The more daunting component of this task being the safe passage from their east coast residence to their west coast adoption families.

Our texting turned to how I would get them safely across the country. The primary inclinations leaned toward dismantling and sending them limb by limb as holiday presents:

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Of course, a box labeled “Human Torso” for the mail person’s delight would be essential in packaging.

But, is boxed transit really the best option?

Would the girls prefer to travel by air?

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Erich remained skeptical and would leave the room as I started trying to persuade his interest. His simple deduction: we all (the three sisters) have too much time on our hands.

I almost gave up on the quest….

AND THEN, my mom came on Sunday to spend the night. (I had surgery Monday morning so her Nana services were required.) I told her about the mannequin and she was surprisingly thrilled at the prospect. She agreed that this was a once-in-a-lifetime opportunity.

Erich countered that I could get a mannequin online ANY (other) TIME I wanted and that I did not NEED to have THIS particular mannequin…

My mom looked on Amazon to check his assertions. It appears that there are many mannequin wholesalers, but none of the versions that we found met the same quality craftsmanship that those in the windowsill had offered (SUPER CLASSY). They were also a lot more expensive.

Fear struck my heart when my mom began questioning if there would be any dolls still available. Certainly, an item like that wouldn’t stick around for long…

NOW, I REALLY FELT THE PRESSING NEED TO HAVE ONE… AND FAST!

It was already after six on Sunday so we had to wait until the following day (after my surgery) to learn of fate’s fortune.

Monday morning came quickly and I went to Suburban hospital at 5:30 am to get my long awaited bone-anchored hearing aid post installed. (Side note: I suddenly and without explanation lost hearing in my left ear about 7 years ago. This surgery has been long overdue but postponed for many reason.)

The surgery was over early and I was home by 10:30 am. I was incredibly groggy so I laid down to sleep off the anesthesia. I woke up at 12:30 pm and promptly called Bebe.

The store manager, Kim answered. She said they STILL HAD PLENTY OF MANNEQUINS! I was relieved. I was still a little affected from the surgery and my head was hurting so I was hesitant to rush right out to the store.

We decided to wait until later to go, if we even went at all that day.

And it is at this cliff-hanging moment that I say this tale is to be continued…

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Steroid HELL

One simple word with significant ramification: STEROID(s). I could write another tragic poem about their wrath. Perhaps I will another day. For now, I will leave my long-winded explanations and get to the punch lines as quickly as possible. This will be my cliff notes version of their prolonged stay in our home.

Steroids are INSANELY EFFECTIVE at eliminating leukemia and lymphoma cells, but their SIDE EFFECTS ARE PURE EVIL. I know nothing of how they work. I just know that they do.  They are necessary to the cure. They are crazy powerhouses against cancer cells but they horribly mangle physical and mental comfort!

Each time I injected my child with more of “the cure,” I felt as if I were actually poisoning him. It caused him such unimaginable discomfort. IT TRANSFORMED HIM INTO SOMETHING UNRECOGNIZABLE!

I have a handful of videos preserved from this time in our lives. They are sad to see; Erich won’t even watch them. Still, I am compelled to share a couple scenes in order to expand comprehension of the steroid transformation. The following was recorded on day 9 of Brooks’ treatment. He had a lucid moment and was standing on his own two feet. He wanted to be a part of the scene. He wanted to play and interact. These simple wishes were not granted and all he could do was exist in his uncomfortable, vegetative state, and watch the world go by.

Also, please notice and applaud our hero, Max. He was (is) everyone’s best medicine. He kept us laughing when all we wanted to do was crumble and cry.

This phase of treatment required 19 STRAIGHT days of steroids. Brooks’ physical discomfort easily lasted another two weeks beyond his last dose. We were well into May before Brooks could smile again.

Here is a summary of his dosing:
April 7 – Began treatment against Mature B-Cell Lymphoma . Along with the protocol for that cancer, Brooks began receiving high-dose Prednisolone twice a day.
April 12 – Brooks’ diagnosis changed to Immature B-Cell ALL Subtype MLL and the type of steroid changed also. Brooks began receiving high dose Dexamethasome (twice a day for 14 days).
He received his last dose of steroid April 26th. I STILL REMEMBER FOCUSING ON THAT DAY… The 19 days stretched for eternity.

After making it to the April 26th finish line, I expected his pain to show diminishing signs each day.  The steroids did not wear off quickly and they continued to maintain a tight grip on Brooks’ comfort. I held him, with little reprieve, morning, noon and night for thirty one days straight. NO EXAGGERATION! Though my arms ached, God gave me endurance to prevail.

Brooks was depleted of any energy but totally unable to sleep. He would wake incessantly through the night. His longest stretches of sleep were one or two hours long. He was in a constant haze because of his exhaustion.

Beyond that, he ate unrelentingly. He was always hungry and talked about food in his sleep. Noodles slathered with butter and chicken nuggets were a staple. I made sure to be well stocked. I had meals prepared in advance of the nights to facilitate our repeated kitchen visits.

We joked about it: how he would go to sleep with a nugget in hand. We tried to keep the mood light. It was necessary for everyone’s sanity to go on as if it were all normal.

Here is an illustration of Brooks’ absurd desire to perpetually feast. He does not appear to be terribly unhappy or uncomfortable in the recording. He is just so lethargic, almost comatose; his inquisitive spark had been squelched. (This video was made on day 11 of his treatment.)

I would catalog the above as peaceful and I am grateful for its tranquility. Nevertheless, when I see Brooks’ helpless face and insipid reactions, I want to reach out and cradle him and tell him everything is going to be okay. My heart breaks for him all over again.

Of course, the steroid weeks were filled with many scenes far more difficult than this to endure; incidents that I did not document by camera:

  • The times when I held Brooks down to perform some necessary medical procedure while looking into his pleading and distressing eyes;
  • The ridiculous and vexing maintenance that the Broviac catheter required;
  • The hours when my arms ached from holding onto Brooks, begging for reprieve;
  • The days that I neglected Max;
  • The terrible screaming matches between Erich and I, born from frustration and fear;
  • These monstrous disagreements conducted right in front of our confused and frightened children;
  • The moments when I looked at Brooks and knew his pain would cause normal men to break.

These scenes echo in my mind and I simultaneously want to forget them forever yet cherish them absolutely. They are necessary souvenirs which serve as everlasting reminders to appreciate life, especially the mundane. They are proof of the strength that God authorized, allowing me to hold on tighter while professing unreasonable hope.

Diagnosis Complications

My sister came to visit this past week with her family. She has four kids and they all stayed with us. (I wouldn’t have it any other way.) You can imagine the chaos. I was anxious but it was well worth the sharing of germs. Max and Brooks adored the time with their cousins. They chased each other around from sun up to sun down. It made part of me want a bigger family myself; it made the other part certain that I DO NOT! 🙂

On one of the first nights of their visit, we sat around talking about the past year. We reminisced about the Rolodex of diagnoses that were considered (both official and unofficial) for our dear Brooksie. My sister reminded me of a conversation I had with her in the earliest days of our discovery. She said that I had told her the name of a cancer that Erich and I and/or the doctors had mentioned; which she then Google searched. I don’t remember the conversation and she doesn’t remember the name of the cancer I told her. She just remembers the horror that the internet told. She said that the chance of survival was reported at just six percent! I’m guessing it must have been a brain cancer of some sort. I know of the immense challenges (but promise) in that field.

During the first week (before our first official diagnosis), the worst was assumed. That week stretched for eternity and a sense of doom hung over our heads. People kept telling me that the treatment of childhood cancers had come so far and that the medical industry was right on the cusp of an incredible break-through. This information was meant to be helpful and hopeful. In hearing it though, all I could think was, “That is great news for the future of pediatric cancer and all the kids that come after Brooks… But what about my baby!? I don’t want to be a case that happened just a few years too soon.” I was so sad to see hope brimming on the horizon that was just too far out of reach. I was so sure that fate would leave us out in the deep abyss. I thought the cure would not make it in time.

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With these reminiscences, I want to stress the importance of two things: staying off the internet and trusting your doctors. I have already imparted my wisdom about “playing doctor dot com,” but I cannot discourage you enough from using the web to gather medical “fact.” I know my brain is twisted enough to come up with terrible scenarios on its own. I don’t need the help of others. The internet is full of bad news and misinformation… (Except if you are reading a blog about someone’s medical journey… Then, by all means, SURF ON!)

On to my second point: I would like to emphasize the necessity in letting the doctors and scientists do their jobs (by not rushing their conclusions). I see now that it is wise to give them space and to trust them. As soon as they had information or evidence, they shared it. They did not share all of the possibilities or every scenario that crossed their brains. We were desperate to read their minds though and we asked a lot of questions in an attempt to do just that. They answered all of our questions with probabilities and percentages. They were good and right to not mislead our hopes. When even the worst was suspected by all, the doctors didn’t say it; but we sure tried to pry it out of them. As they answered our “worst-case-scenario questions,” each doctor was careful to maintain that there was hope in our situation. They all had such professional optimism. The team at Children’s National is competent and know what they are doing. In retrospect, I see just how far their knowledge extends. How incredibly accurate they were to not commit to their first (or second, or third…) inclination.

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Because of the complexity in the field and specifically in Brooks’ case, his diagnosis changed five times! Below is the list and order of cancers that were indicated.

  1. Brain Tumor (Unofficial; Considered)
  2. Ewing’s Sarcoma (Unofficial, Presumed)
  3. Mature B Cell Lymphoma (1st Official; Brooks began treatment protocol for this)
  4. Acute Lymphoblastic Lymphoma/Leukemia (2nd Official)
  5. Acute Lymphoblastic Lymphoma/Leukemia MLL Sub-type (3rd Official; FINAL)

Before this, I knew nothing about cancer cells. I basically thought, cancer was cancer. I thought it was different from person to person because it grew in different spots and at different speeds. I didn’t know how differently one cell can behave from the next, even within the same class. The vastness of this field still escapes me and my knowledge remains rather limited. Thanks to Brooks, I have a greater appreciation for the terrain.

Brooks had his biopsy preformed on March 31st. The 3rd and Final diagnosis we received was on April 12th. Scientist were growing and studying the cells they biopsied for almost two weeks! Nowadays, when I think of the scientists who worked so hard on Brooks’ case, I imagine them in a white lab coat in a pristine environment in the basement of Children’s National. I imagine them studying the cells’ behavior under a microscope; watching as they divide and multiply between two thin plates of glass. (My visualization may be way off from reality, but my awe of their work is genuine.)

The scientist’s job is of paramount importance because cancer treatments vary dramatically from one type to the next. They have to tell the doctors which cancer cells are present so the doctors can establish which weapons to bring to the front-lines.

Brooks’ cells expressed themselves in a very unique way. In addition to the rare and strange way the cancer initially presented itself to us, the cells themselves behaved in a highly peculiar manner. Our diagnosis was more convoluted than most. The harvested cells were first studied by the laboratory Children’s most often trusts. Their initial interpretation was that Brooks had Mature B-Cell Lymphoma. (When we began treatment on April 7th, this is what we thought we were up against. It is because of this diagnosis that Brooks was fashioned with the Broviac Catheter devise that I illustrated in my last entry. Just five days after he had his surgery for this mechanism, we learned that it was not necessary for his treatment.)

We were given an official diagnosis but the cells were not conclusive in their behavior. The doctors were not satisfied in saying, “Yeah, we’re pretty sure.” Instead of committing to the initial prescription, they made sure to be thorough. We began treatment for the first diagnosis but they sent Brooks’ cells on for further examination at the National Institutes of Health. Brooks’ case required assistance from their heavy hitting team of intellect. One of the premier cell readers (if not the world’s best), Elaine Jaffe, made her knowledge and expertise available for our case. It was Dr. Jaffe’s research and study that determined Brooks did not have Mature B-Cell Lymphoma, but rather Acute Lymphoblastic Lymphoma. We were so excited to hear this change in diagnosis because, along with it, came an increased cure rate of 90%.

But…

Just hours after the “ALL” designation was brought to our awareness, Dr. Jaffe uncovered further complexities of Brooksie’s cells. Brooks still had ALL, but there was something odd about them. We were given the “sub-type MLL” designation. I don’t know much about this sub-type except that it makes Brooks fall into the “high-risk” category for treatment. His therapy lasts longer and is more intense because the cells are particularly resilient.

We are indebted to the persistence Children’s Hospital gives in determining the appropriate diagnoses. They don’t give up. They are not satisfied with, “This looks good enough.” They make sure it is perfect. They take their jobs seriously. They know one small mistake can be lethal.

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This is when I have to point out the POWER OF GOD (and your prayers) through these discoveries.

We were not incredibly frustrated that our diagnosis and treatment kept changing. We had so much faith that we were in God’s hands. In our minds, every change ensured that Brooks had a better chance of living. Any advancement that gave Brooks a greater opportunity for life, we knew was the result of God’s loving hand.

At first, every time we had a call saying there has been a change or a new development, it was for the better. That happened until the last change when it wasn’t for the better. It made Brooks’ road harder and longer.

There was a time that I thought God’s hand specifically changed Brooks’ diagnosis. I know it is not beyond his power, but I don’t know if that is right to believe now. There are two reasons for my doubt. If I follow this thought, that would mean that God kept changing Brooks diagnosis for the better and then in the end decided to make it just a little bit harder… That’s not my God.

The other reason for my doubt is that I don’t think God would just pick and choose the cases for his help (systematically or at random). I don’t think parents, with children fighting more difficult cancers, didn’t pray hard enough. 

Why do we continue to try to make sense of that which is beyond our comprehension?

This is what I know: I know that He was there carrying us through just as He continues to do so now. Through all the back and forth over the appropriate classification, we still trusted in our doctors. I believe that God saw to it that our hearts not be filled with doubt in their hands.

I am also quite confident that He knew what He was doing when He lit the fire in our doctors’ hearts to become oncologist. The work they do on behalf of those least able to fight for themselves is astonishing. We are FOREVER GRATEFUL to Dr. Jacobs and Dr. Hittson. I had only just met these two, but I felt safe with them and I was comforted knowing that Brooks was under their care.

Whatever the intricacies may be, the hand of God is clearly imprinted on our journey; on my entire life, for that matter. He has rescued me countless times. I am not capable of understanding God, but I can appreciate His love to the extent of my being.

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There we were 5 days, into treatment and I sent out the following message. I read it now and it sounds somewhat assured. I’m not sure where that came from. I think I was still riding on the elation that Brooks cure rate, went from almost zero to about 80%. I felt confident that God had our back. Also – the steroids had not kicked in to their most debilitating levels; so the almost incessant discomfort that Brooks would enter was not yet conceived.

-April 12, 2016
We received some challenging news today as Brooks’ diagnosis has been altered again.
Based on further genetic testing of Brooks’ cancer cells, it is concluded that he is battling Acute lymphoblastic leukemia/lymphoma MLL subtype. The battle is a bit more uphill than we thought a few days ago, but if he responds well to treatment, he can overcome his cancer. Doctors say he has a good chance, but I say he has a great one because he is Brooks. We are in God’s hands, He is guiding the doctors. Your prayers are lifting us all on this journey. We have only just begun our fight. Chemotherapy will ravage Brooks system. Right now, he is tolerating the medicines well enough. He received his second dose of chemo today. He is still filled with anxiety during the majority of our time in the hospital. Anytime a nurse so much as looks at him, he is in tears. He did enjoy some time in the art room with other kids on the oncology/hematology floor. He is very happy when he is home. You wouldn’t even know he is sick. Please keep lifting Brooks up in prayer.
Many have asked about his therapy schedule. Our treatment plan has changed with this diagnosis. We will receive the majority of our medications and chemo as outpatients. We will come to Childrens twice weekly for therapy. We will do this for 7-8 months and then we will come monthly for about three years. There will be times when Brooks will require inpatient stays so we will check into the hospital for 5 days or so. Our plan may be altered based on how well he responds to treatment. The new diagnosis requires a greatly exaggerated time commitment, but we are grateful that Brooks will be able to sleep in his own bed most nights.
We are fearful about the future and side effects of the drugs and his compromised immune system with possible infection to his Broviac catheter; I could go on and on. We have so many fears but we are trying to take each day and each challenge as it comes. We do have faith. We know God is taking care of us. Our incredible network of friends and family continue to move us to tears. We know Brooks will be cured because of your love and support. We are forever changed. 

Dark and Scary (Getting into the fight)

I will not take time to give a blow by blow replay of every thought and emotion from this hospital admission. I will do my best to narrate just the highs and the lows. The morning of April 7th does contain one moment that still haunts me and I wish to set it free…

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Entertaining the little guy while waiting for his surgeries to begin.

April 7, 2016

This day is the VERY BEGINNING of Brook’s treatment. It is his OFFICIAL DAY ONE. You are right to deduce that it was dark and scary everywhere we looked. We were still operating under a veil of shock and disbelief but FEAR plagued our souls.

The day began early at Children’s National Surgery Center as we prepped for a number of procedures. Brooks was to have a spinal tap and a bone marrow sample taken for further diagnostic testing. He would also have his Broviac® catheter installed for ease of administering chemo-therapies. For clarity, the pictures below show this device.  

Even though life was still so very dreary, we were now much more aware of the power of prayer. We felt it’s stabilizing influence. Because of this, before the operations began, we sent out the following message on Facebook.

Please keep up with the prayers for this little guy. Another tough day: surgery for port placement, spinal tap and bone sample this morning. Followed up by first chemo treatment this afternoon. Your prayers are helping. with Erich Cabe.

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This image crushed the hearts of anyone who loved Brooks. The moment that Erich captured so well shows Brooks with a solitary tear running down his face. He carries the look of a beautifully sad and precious little angel who doesn’t know that life suddenly became so fragile. This message received an astonishing 70 shares. SO MANY PEOPLE WERE PRAYING SO HARD FOR BROOKS; I honestly thought God would cure him right then and there on the spot. I kept thinking someone would come in and say, “We can’t believe it ourselves, but Brooks is no longer sick! You can go home now. Sorry for the inconvenience.”

As that didn’t happen, we had to keep putting one foot in front of the other watching one difficult moment unfold into the next.

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Brooks is ever-the-trouper. Here he is prior to surgery, with one sock off, just banging on the bubble tank like any tough guy.

While Brooks was in surgery, the doctors came to talk to Erich and I. They had an ENORMOUS three-ring binder filled with information about Brook’s cancer and treatment plan. This was to be our owner’s manual for the care and keeping of Brooks. They were talking to us for what seemed like a very long time. They were emphasizing the importance of following the directions listed in the guide they had just given us. The information was overwhelming. How was I qualified to do what they were asking!? Whatever fear we had prior to this exchange, was multiplied. This conversation made everything so real.

Before we went into the consultation room, the doctors told one of the administrators of the waiting room where we would be and asked that we be notified when Brooks started coming-to after surgery. The request was not executed as planned. After a length of time our doctors became curious and went to check on Brooks’ progress. They came back right away and ushered us toward Brooks’ recovery room.

This brings me get to that one moment to which I eluded: the one moment in all of Brooks’ treatment that burns me with resentment…

As we drew near Brooks’ cubicle it was clear there was a full-on emergency situation underway. The recovery room was filled with doctors and nurses reacting to Brooks who was in some serious distress. As we drew close, I caught a glimpse of my baby’s naked body writhing in agony, arching his back away from the bed. I was appalled and thought, “Surely, I should not be here right now.” I turned and walked into the waiting room right next door. The scene was far above my pay-grade. I left because I thought I didn’t belong. I thought I would add to the chaos. I thought I would contaminate the scene. I thought if I was there and reached for him, I would only cause him pain. I WAS WRONG! Half a second passed and I gathered myself. I don’t think anyone told me that I could go into the room of medical professionals. I think my mothering instinct kicked in. Something told me that BROOKS NEEDED ME AND ME ONLY!! I grabbed my baby off the bed and held him in my arms. I rocked him back and forth and whispered, “Mommy has you. I love you so much. You are so brave. Mommy has you. I love you so much.” Over and over and over again.

Brooks quieted down.

A nurse noticed that I was pale and told me to sit down and went to get me a Ginger-ale. I’m so glad she told me to sit because it was at that moment all of the stress caught up with me. I have passed out enough to know what it feels like just before losing consciousness and I was right there. If I didn’t have such an overwhelming NEED to keep holding onto my baby, oblivion might have taken me.

Because of the difficulty with breathing that Brooks had while coming out of anesthesia, they had to make sure there was not fluid in his lungs. The doctors then had to do an x-ray.

His lungs were fine. The ONLY THING HE WANTED WAS HIS MOMMY.  When he started to wake from anesthesia, he was afraid and in pain and I WASN’T THERE! He panicked. His distress caused his lungs to constrict beyond function. He was without air because of his fright. They assure me that it was a short time; that we needn’t worry about brain damage. THIS IS WHAT GETS ME: I WASN’T THERE in one of the most frightening and excruciating situations he had ever found himself. I feel like I FAILED HIM. Had the message of his awakening been delivered, his panic, the lack of oxygen, the extra medicines, the x-ray, the confusion, the BETRAYAL, could all have been avoided. I have lost a lot sleep torturing myself by replaying the image of his suffering.

I know humans are imperfect and this situation was just plain unfortunate. I know forgiveness for the lack of communication toward all involved (including MYSELF) is what this situation demands. I do not always dwell on this occurrence, but I have yet to be freed from its guilt. I know, it seems counterproductive to continue to give thought to this one frightening situation when our baby has been saved… I think I just have locked onto this one moment as a place to put all of my anger towards Brooks’ situation. I have somewhere to place blame…

I know Brooks has long forgotten this event. It may very well have slipped from his brain by that very same evening, when he received his first chemotherapy. This is the glory of Brooks being but 17 months at the time of his diagnosis: he lives only in the moment. It is also likely that he will have ZERO recollection of the MAJORITY of his cancer treatment.

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Here we are recovering from the trauma. Another ice-lolly helping to soothe the soul.

After the procedure, we went upstairs to the fourth floor and began our inpatient stay. It is during this admittance that we finally began our attack on the cancer. It was gratifying to know that we were doing something to fight back.

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This picture was taken on April 6; the day BEFORE Brooks began treatment. This shows the paralyzing effect the cancer growth had on his nerve. This is why I previously said. “We looked at Brooks and imagined the cancer cells rapidly dividing, taking over his little body.”

We were anxious to begin but not excited about the cure. Considering that chemotherapy drugs are a strong poison made my heart miserable… In many cases, the drugs themselves cause cancer. It’s not delivered in a pretty package with sparkles and glitter either. The nurses dress head to toe in protective covering. They wear special fluid-resistant garments. The extra masks and gowns cause discomfort for everyone… even the nurses. (Apparently they are very hot.)

Again, I remind you that we are incredibly grateful for our care. The entire field of cancer has made astonishing leaps because of research. Just 20 years ago, childhood leukemia and lymphoma carried a 4% survival rate. Now, for most cases, the cure rate is over 90%. The drugs have also become more tolerable for the patients.

The actual chemo administration was relatively simple and easy. There was no vomiting, there was no screaming as the fluid entered his veins. The only thing Brooks hated was the nurses. If they were touching him he yelled as loud as he could in their faces. Nothing I said or did could ease his protesting.

The mere presence of any stranger near our room was one that Brooks would not adjust to for many months to come. When the nurse came in with her head-to-toe blue robe, Brooks was especially beside himself.

With occasional disruptions, we made it through and the night bled into the next day. I sent out the following update:

April 8, 2016

Yesterday was a difficult day… A nightmare within this nightmare from which we can’t seem to wake up. Brooks had some difficulty coming out of anesthesia. Erich and I walked into a room of panicked doctors as Brooks struggled to breathe. I can’t explain the terror of the moment but know we were all carried through on a strength not of our own. Brooks still had his first dose of chemotherapy last night and that seems to have gone smoothly enough. The doctors called this dose “chemo-light.” Today, Brooks is in some pain from all the diagnostic surgeries and prep and possibly the growth of the tumor behind his ear, but with pain medicine and a healthy dose of steroid, he is a happy little bulldozer of activity. So many people have inquired of Brooks well-being… And also of his brother, Max’s. I can’t explain how grateful we are for this outpouring of love. We have a long road ahead as we fight what we officially now know is diffuse large B cell lymphoma. I will continue to give updates along the way. Brooks is one hell-of-a fighter already and has a tremendous spirit. Max is the best medicine for us all, keeping us laughing and in the moment. Thank you for holding us in you hearts and for your sustaining prayers. — withErich Cabe.

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The rest of this hospital stay is gone from my memory. I’m guessing its because it was uneventful and that is a good thing. We were in the hospital for at least two more days. I know because I have photo documentation. My mind is black when I try to think of how those days were filled.

Brooks was not yet interested in the iPad and the available toys held his interest for only a short time. I have one picture of Brooks with a clock on his head. I remember this was a source of great amusement for a good 15 minutes. I know we made many videos for Max, telling him how much we missed him. I remember exhaustion and sadness and clutching as tightly as possible to my baby. I remember countless people reaching out to us; showering us with love and support. I remember holding tight to their prayers. Mine were desperate and sad and full of worry and fear. But the prayers of others, they held hope.

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I am grateful that I do not remember intricately the hours passing during this admission. That is three days of my life I am happy to black out. The entire first month was a never-ending nightmare. My heart goes out to families who are just getting their diagnosis and who are still trying to figure out how to live in their new reality. It does get better but it takes some time to adjust.

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How Extensive is the Cancer? (PET/CT Scan Day)

Thinking back to these early days is harder than I thought. We made it through that intensely tragic time, but looking at these pictures, I recall the moments when such innocence met shocking misery.

As far as Brooks knew, doctors were not there to help him. There is no way he could understand that. He didn’t know suffering until we stepped into Children’s Hospital. To him, doctors and nurses were torturing aliens. During those first days, my limbs were profoundly heavy as I brought my child back to the mother ship to offer him up to these intruders.

I’m not saying we were ungrateful for the care or distrusting of our physicians; we have always known we were in the most capable of hands. What I mean to emphasize is that it was so hard to be the grown up. All I wanted to do was run and hide under the covers (clutching my boys). Instead, it felt as if we were walking right into the fire. The flames bring life but they still burn like hell!

The morning of April 5, 2016 went smoothly enough. Brooks drank the pet scan contrast serum without much fuss. Crystal Light Lemonade flavor helped to peak the interest of his taste buds. He still didn’t have his port for ease of vein access so we had to go through the trouble of locating a seam the old-fashioned way. I was yet unpracticed at holding Brooks for such uncomfortable procedures. I cried along with him as the two nurses and myself wrestled him down and found a vein. Taping and bracing the tubing seemed to take an excruciatingly long time.

After this struggle, Brooks quieted down and we were taken back to our radioactive-safe waiting room. The room was dim and had a soothing bubble tube. I don’t remember how long we had to wait before beginning the PET/CT Scan. I know I was worried about the duration of the wait and how I would entertain a hungry and scared child. I was shocked when Brooks fell into a deep sleep in my arms. It was still only 9 am and so uncharacteristic of him to fall asleep with ease. I was incredibly grateful for the peaceful comfort of his sleep. I am sure it was a God-given gift.

As he slept, I sent out our first update of the day:

Praying for miracles today. Pet and scan at noon to see if cancer exists elsewhere. Our angel is asleep right now. God has given him comfort.team cabe 3

This message got an overwhelming 41 shares on Facebook. News of our struggle traveled wide and people prayed all over the world for Brooks!

Prior to this early morning, we had 4 anxiety-filled days at home as we awaited our final pathology. News of the specific cancer Brooks was battling had still not arrived as we began the day. As I mentioned, we thought we were fighting Ewing’s Sarcoma. We were desperately praying the cancer did not exist outside of Brooks’ facial nerve cavity.

As Ewing’s Sarcoma spreads, the cure rates dwindle significantly. The statistic that was shared with us was if this was an isolated incident, research supports a 70% cure rate. If the cancer had spread, this number drops to 30%.  This is all that I knew about the cancer we thought we were fighting.

I was told to stay off the internet. I did exactly as I was told. I know from past illnesses that playing with WebMD only results in the worst case scenario diagnoses. I needed hope to breathe. I clung to it with all my might. I remained in the dark and did just what the doctors told me to do.

I am now so incredibly grateful that I did not try to arm myself with knowledge about Brooks’ condition. I would have found tales of heartbreak that do not belong to me.

The PET Scan was relatively quick and we did not have any surprises with this sedation. Brooks came to and enjoyed a cherry popsicle as we were cleared for discharge.

Later that day, we finally received news back from the laboratory which was studying Brooks’ biopsied cells. It was better than good news. IT WAS A MIRACLE!!

Here is the message I shared with our friends:

Believe in the power of prayer. Friends – We are humbled and overwhelmed with gratitude for your love, support, and most importantly, your prayers. Today, we finally received some news that may be considered positive. Although the doctors are still waiting for the final results of the pathology report, they believe that Brooks’ cancer is a Lymphoma and not Ewing’s Sarcoma. This in not yet confirmed, but they are quite confident that is the case. If it is, Brooks has a better a chance of fighting this than the original prognosis. The pet scan did reveal that the cancer is in his femurs, hip bones and right clavicle, but this is the nature of lymphoma. Brooks will have another procedure on Thursday to test his bone marrow and spinal fluid. They will also install a port for his chemotherapy, which will start immediately after. We believe Brooks’ prognosis today is because of your prayers. He will need many, many more in the coming days, weeks and months as we continue to battle this thing. From our family to yours, we thank you and ask you to keep praying for our precious little boy. With love, Amanda  and Erichteam cabe 4

This post received 42 shares! It is only when I went back to retrieve my earlier notes from my Facebook “news feed” did I notice how many people shared this message. It is quite overwhelming. I am currently straining to write through my tears because of your love.

Re-reading the message, I remember how cautious we were in our wording. We were terribly happy but so careful with our joy. We didn’t want to get our hopes up. We didn’t want to get your hopes up. WE REALLY DIDN’T WANT YOU TO STOP PRAYING!

The PET/CT Scan did reveal that Brooks’ cancer existed throughout his body. With the diagnosis of Lymphoma rather than Ewing’s Sarcoma, we were reassured that we need not worry about the extensiveness. Leukemia and Lymphoma, by their nature, dwell throughout the body. They are referred to as “liquid cancer.” This change in diagnosis dramatically increased Brooks’ likelihood for survival (as well as boosting the chances that my heart will go on with its function properly).

April 5th was a day that my faith in God grew without measure. I would need this trust in His strength because our next visit to the hospital would not be so easy.How Extensive is the Cancer? (PET/CT Scan Day)How Extensive is the Cancer? (PET/CT Scan Day)

D-Day (Diagnosis Day)

Prelude:
I am cataloging the memories and experiences from our first year of Brooks’ battle with cancer. I hope our struggles, endeavors, surrenders and victories may give hope to other families fighting their own battles. I also am interested to see what recalling these moments will bring out in me. There was so much emotion behind the words of many simple messages on Facebook. I have not had the wherewithal to replay these scenes until now. Remembering the pain of these moments is tragic yet touching for my soul. Sharing my thoughts now is healing. I am putting words to my emotions, not to prolong the suffering but to release myself from it.

TODAY – March 22, 2017

Looking back on “diagnosis day” almost a year later, I can see how very protected we have been all along. From the way the lymphoma initially present itself, to the way our hearts were guarded by shock, to the way God spoke loudly telling us to LEAN on our friends; I believe, all of this and SO MUCH MORE were divinely influenced.

Cancer rears its hideous head in so many ways. In young people, specifically those who can’t explain how they feel, diagnosis can be exceptionally difficult. I still do not completely understand the anatomical and physiological development of Brooks’ cancer. I will explain more of what I have learned in future blogs. For now, I will say that Brooks’ lymphoma began growing in an uncommon space… It grew from a lymph node right beside a facial nerve, in a confined area. As the cancer began to grow, pressure on this nerve caused half of his face to become paralyzed.

We are told that Brooks’ cancer spread quickly throughout his body. We now know that lymphoma can be very painful as it grows in the bone marrow. We knew nothing of Brooks’ discomfort before diagnosis. We thought he was having teething pain… I thought he was sensitive. Little did I know how incredibly tough he was. He barely complained (especially not during the day) of the pain he most certainly was experiencing  in his hip, clavicle and thigh bones.

The doctors say it would not have taken much longer for other symptoms to develop had the cancer not presented itself with this initial paralysis. However, since it grew in such a small and obvious area, Brooks was spared any additional weeks of suffering. For that we are grateful.

Those first days brought meaning to the words heartache and despair. Still, we were shielded from the full-blown realization of what was happening by astonishment and doubt. Had shock and disbelief not been my armor, I surely would have been incapacitated by the grief. My mind could not fully grasp the tragedy that was happening. I walked through those days in a haze. I believe God guided me in this trance so that I could function properly enough to keep breathing.

As I explained in my last post, the MRI on March 30th revealed that Brooks’ facial paralysis was caused by a mass of some kind pushing on the facial nerve. The doctors did not (could not) come out and say it was cancer. They suspected that it was. There was still the possibility that it was merely an infection of some sort. Further study of the mass was necessary so a biopsy was scheduled for March 31st. While I couldn’t sleep or eat, I hung onto the hope that it was simply a strange infection, praying for this with all my might.

Brooks and I spent our first endless night in the hospital after the initial MRI and before the biopsy. I did my best to comfort Brooks in this incredibly new and scary environment. I could swear that first 24 hours we were in the hospital actually lasted a week! Erich had to go home to care for Max. The next morning, the 31st, Erich took Max to school and then went on to pick his mom up from the airport. (She had flown out from Park City to our aid.)

Brooks’ biopsy was scheduled for mid-morning (Wednesday the 31st). They kept him on intravenous fluids so he was not too fussy from hunger. He mostly was just afraid. We were fused together tightly until I placed him on the operating table. During the surgery, I had a couple hours with which to do nothing but worry. I hadn’t eaten since the previous morning. I went to the cafeteria. Eating seemed excessive and frivolous in the face of our tragedy, yet I knew my body needed fuel. I grabbed a slice of pizza and went to pay for it. I got in line and was either currently crying or showed signs that I had spent the night doing just that. The woman who worked at the check-out counter noticed my distress. She came around from her seat and gave me the biggest hug. I lost it again right there and shook in her arms. Another woman, who was some kind of doctor at Children’s came over to us, knowing nothing of my story or situation she said, “No matter what, there are advancements in medicine made everyday. Children’s hospital is on the cutting edge of all cures.”

I held onto the comforts of these strangers and gathered myself. I went to look out the windows of the cafeteria and eat my pizza. I picked off a piece of sausage and put it in my mouth. I chewed but couldn’t swallow. There is something about fear and grief that makes your body shut down. Eating was not a luxury my mind would allow. I threw my pizza away uneaten and walked out of the cafeteria.

Just as I walked out of the doors, my dear friend, Barbara, walked right into my line of sight. Stars aligned as she had a small break from work where she was able to escape and come to offer support. Her timing was another blessed moment.

We walked back to the waiting room arm in arm. She gave me a bracelet that bore the inscription, “courage.” I clasped Barbara and fiddled with the bracelet nervously as we waited for news about Brooks. Erich was still not back from picking up his mom by the time the surgery ended and the doctor came to deliver his preliminary findings.

Barbara came into a consultation room with me. We sat hand-in-hand as I listened to the doctor speak in another language. I was grateful that I had Barbara to rely on to retain his words. All I heard was “small, round, aggressive blue-cell cancer.” The initial suggestion was that Brooks had Ewing’s Sarcoma. The final pathology would take a week or so to conduct.

We were told that with it, Ewing’s Sarcoma carries a 70% survival rate if it hadn’t spread. If the cancer had spread, the survival rate dwindles to 30%. I knew nothing of cancers at this point in my life and was foolish enough to hope that it was Ewing’s Sarcoma.

Erich did make it back to the hospital prior to Brooks waking up from his surgery. We embraced and tried, without success, to find comfort in one another. Barbara slipped out. I am forever grateful for her presence during those crucial moments. Below is the message I sent out over Facebook asking our friends for their love just after the biopsy.

“Please pray for our boy. He was just diagnosed with a malignant tumor.”

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I don’t know why we had to spend another night in the hospital…I can’t remember. Like I said, there was a haze to my consciousness. Perhaps it was to make sure Brooks healed from the surgery well enough. I can’t think of another reason. Erich stayed long into the evening. (Erich’s mom was taking care of Max, making sure he didn’t miss us too terribly.) Erich, Brooks and I ordered pizza and tried to smile. We went to the play room and did our best to make it all seem normal and okay for Brooks. It was at this moment when I made my first unnatural Facebook post. Part of me wanted to be self-sufficient, to try to be strong all on my own. God had other plans for me. I listened to Him this time. I had an overpowering impulse to let others in and allow their embraces. I owe this compulsion to a higher power guiding my heart away from pride. (Below is the second of two posts on Facebook from the day. I remember writing it trying to portray a more positive attitude than what truly existed.)

team cabe 2We are so thankful for our supportive friends and family. This is such an overwhelmingly scary time for our little family. Today has been filled with terrible desperation and many heart-wrenching moments but we are not alone in this. Thank you all for expressing your sympathy and willingness to help. We are going to need it and we are going to take you up on your offers!

-March 31, 2016

The next day we were sent home to prepare for the next steps of our treatment. The question that weighed heavily on our hearts was, “What beast exactly are we facing?”

We came home from the hospital on April 1st. It was a gorgeous, warm and sunny spring day. My dad had flown in from California to be with us. I remember the sun seemed so bright that day. It was so wonderful to have both Erich’s mom and my dad in town. Our porch was filled with love. The boys were playing in the grass loving the attention from their grands. The day would have been perfect…

My heart was so tense and full of fear. Erich and I both were eager to begin treatment. We looked at Brooks and imagined the cancer cells rapidly dividing, taking over his little body. Half of his face was still paralyzed; you couldn’t look at him without considering his future. He had stitches running down the back of his right ear from the biopsy. It looked as if they sliced the ear right off and then stitched it back in place. Still, Brooks was so happy to be home. He was blissfully unaware. Max was also so happy. For their obliviousness I am grateful.

At this point in my life, I was still an amateur at sharing my emotions candidly on Facebook. I was just learning how to ask for help. We were being carried through all of this, but still, I felt so alone in the first days and weeks of our journey. Only when I physically held onto Brooks did I feel somewhat at ease. When he was away from me, I felt out of control. I had not yet realized God’s firm grasp. I only had an inkling of trust. That would change as well as so much else about me.

Our Ground Zero (Before we knew cancer)

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-March 13, 2017
On this day, exactly one year ago, Brooks woke from a short nap. He was fussy and tired. I noticed that one of his eyes didn’t shut all the way. I assumed (hoped) it was just related to being fatigued. I was distracted because I was rushing the boys out of the door to meet our friends at the National Air and Space Museum. The boys had an awesome time running around the open spaces under the aircraft. My friend, Stacy and I enjoyed some necessary grown-up conversation. We made plans to have similar field trips at least once a month with each other…

Within two days of this trip, it was clear that there was something wrong with Brooks’ face. We took him to our pediatrician. The good doctor took one look at Brooks and said, “Go to the ER at Children’s National right now.”

I will not take the time to relay the emotions of that visit… everyone knows how taxing the emergency room can be with small children. One of the doctors, who met with us briefly, hinted that he thought we should get Brooks in for a pet scan that afternoon. Another doctor did a full examination and determined that Brooks had “Bells Palsy” (paralysis or weakness of the muscles on one side of his face). They took a blood sample. We breathed a sigh of relief. We were sent home with a 5-day course of steroid and a follow-up appointment with their neurology department.

The steroids worked (or so we thought).

I had previously scheduled an a trip to Florida to visit my mom and stepfather. The doctors said it was okay to go and that we could follow up with the neurologist when we returned home. Max, Brooks and I headed south for a reprieve from the winter. Erich stayed to finance the operation.

On this trip, the paralysis returned. I called the neurology department at Children’s to report. Looking back on that conversation, there was some alarm in the nurse’s voice as we spoke, but it didn’t quite register at the time. Our follow-up appointment was expedited to Monday, March 28.

Erich exchanged emails with the neurologist prior to our visit. In one of the emails, the doctor said: “The electrolytes, liver and kidney panel were normal except the value of alkaline phosphate which is 1800. That’s quite elevated out of the normal range. Alkaline phosphate is a mineral found in bones so it’s unusual that Brooks level is so elevated when he has no issues with bones.”

We didn’t know what that meant but Erich made some assumptions…

The night before our neurology appointment, Erich told me not to give Brooks anymore ibuprofen because it could have caused this blood abnormality. I had already given him Advil that evening and many of the nights prior. (He had been getting so much ibuprofen because I thought he was having teething pain.) I stayed up all night worried that I had poisoned Brooks by giving him too much Advil.

During our appointment, I really don’t remember much of what was discussed. I know it was scary but I was in denial that anything tragic could happen to my family. I know the doctor examined Brooks and that she ordered us to get another blood sample. Because the initial specimen showed such a high level of alkaline phosphate, she wanted to make sure it was not simply an error. She also set up a MRI for the morning of Wednesday, March 30.

That day, March 30, 2016 was the second worst day of my life.

Erich dropped Brooks and I off at the hospital in the morning. I was stressed because Brooks had to go under anesthesia and he was hungry and agitated. Keeping Brooks distracted during the hours leading up to the MRI was my biggest fear at the time! Erich had to work. He would pick Max up from school and I would take an uber home when Brooks woke from his MRI.

I knew something was wrong when they didn’t come to get me after 30-45 minutes as was indicated.

I don’t remember how long I waited or who came to get me but I remember the amazing nurse who was there when one of the doctors told me they had found a suspicious mass. Brooks had to be put under deeper anesthesia because the mass discovery required a pet scan. Brooks was not yet back from these procedures. It was just me and this sweet and beautiful nurse, Jenny. She held my hand and gave me a hug and tried to find the right thing to say to someone when there are no words to say.

I called Erich and told him through tears that he needed to come back. I know we made arrangements for Max but I don’t remember what they were. I do remember Erich getting to the hospital and giving me a hug trying to make me feel better. It didn’t work. Brooks was still not back from his pet scan. All I wanted to do was hold my baby and tell him everything was going to be okay.

The doctors came in and told us that they scheduled a biopsy of the mass for the following morning. Brooks and I would be spending the night in the hospital. That night would be the first of many endless nights at Children’s.

When Brooks was finally wheeled in on the surgical bed, hooked up to IVs and with a breathing mask covering his face, he was sleeping. He looked like an angel. He was so innocent and helpless. I finally got to hold him in my arms and I haven’t let go since.

My heart broke that day. It would crumble the next.