Diagnosis Complications

Reflections of April 12, 2016-
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. 

 

 



Categories: Lullabies & Battle Cries (Our War with Cancer)

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  1. Is the treatment working? (Reflections from May 4th and 5th 2016) – For Crying Out Loud

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