Is the treatment working? (Reflections from May 4th and 5th 2016)

I have really been wrestling with finding motivation to reflect on our past struggles surrounding cancer. It’s not our reality anymore. The days are full of so much carefree enjoyment! We went to a carnival this weekend for goodness sake! Previously, I couldn’t even think about going to the grocery store without breaking out in anxiety.

Beyond that, looking back on these months is almost harder than living through them. The pictures rip my healing heart apart. I wind up in tears as I re-feel all that Brooks’ lived through. What once was cathartic has turned into an arduous task; I dread this regurgitation.

When we were in the middle of the crisis, we put our heads down and put one foot in front of the other. The days were filled with just doing what needed to be done. We adjusted. We adapted to the horrible circumstances. Erich and I transformed into soldiers marching through the long days. We tried to keep smiling. It was imperative to keep morale high… The whole world was heavy but we trudged on, always trying to push sentiment away.

Our grief created a capsule that even sadness (at times) wouldn’t penetrate. I think this was necessary for survival because if we had felt everything, we would have been rendered useless.

I am committed to these reminiscences though. I expect that my mind’s retention of these events will one day not be quite as strong. There are some important lessons that I still have to learn from its history.

So, I will dive back in to my memories and take us back to the beginning of May. Although we didn’t know if at the time, we just made it through the hardest month of Brooks’ treatment (diagnosis followed by a storm of chemo and the horrors of steroids). Still there are plenty of challenges which lay ahead and we focused our attention toward the next battlefield.

We had just finished the first phase of treatment (Induction) and we were entering into the second phase (Consolidation). BUT FIRST, Brooks had two tests… A Positron Emission Tomography (PET Scan) and a bone marrow samplings. These tests were scheduled for May 4th and 5th, respectively. The purpose of these tests was to determine if the treatment was working. The doctors had to know if Brooks was responding to the prescription. They had to know if they were on the path to the cure. If the results showed that protocol was ineffective, they would alter the course of medicine.

These tests were just a month after Brooks began treatment and we didn’t really know what to expect. The doctors kept saying, “Most often the cancer cells are imperceptible by this point,” (meaning that the child was in remission). Then they would always add, “but some children still show residual cancer cells which they later go on to clear.” What they wanted to see were significant drops in the extensiveness of the cancer.

When they added the “but” statement, I thought for sure they were telling me (ME) this because they didn’t expect Brooks to be clear. His cancer is high risk and a bit more difficult to treat. I thought they were adding this caveat as a protection for our hearts and sanity.

The days at the hospital were like all the others: long, hard, scary. Keeping our emotions at bay, we performed the next exercise per doctors orders. I sent out the following message one the eve of PET Scan:

Our little warrior has two big tests this week. Tomorrow he has a pet scan and Friday he has a bone marrow sample. These two tests will tell us how well he is responding to treatment. As always, we ask for your prayers. Brooks has been in a great mood the last couple of days. Everything is brighter when he smiles. Max is still a ray of sunshine for us. He knows somethings is off and he certainly sees the extra attention Brooks is getting. We are trying to help Max adjust by giving him lots of love also. The boys grandparents and our close friends are lifting our burden. Thank you all for your continual love and prayers!

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This was the second PET Brooks had received in less than two months. The first revealed that cancer existed throughout Brooks’ body. It was primarily located in his hips, clavicle and thigh bones. It was quite extensive and the doctors were impressed that Brooks’ demeanor leading up to diagnosis was not more affect by the pain he was certainly experiencing. This 2nd scan will show us if there are any areas of existing abnormal activity.

Erich sent out the following message from the hospital on May 4th. In the picture, you can see an extra IV placed into Brooks’ arm because the contrast agent could not be injected into Brooks’ Broviac Catheter. Brooks has his lovey (named Nana) in one hand and is watching some entertaining show on YouTube… (I’m guessing Dave and Ava ❤️!) We are so incredibly grateful for technology at this juncture; I can’t imagine how hard it must have been for parents to distract their children prior to these conveniences.

Pet scan go time.

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Later that same day, I sent out my very carefully worded update with a tremendous amount of guarded optimism:

We received some good today! According to the PET scan Brooks had this morning, he is responding very well to treatment! Praise be to the Lord! This news does not alter our treatment plan, rather reaffirms that we are on the right path. Tomorrow he has the bone marrow sample that will show further evidence of response. Brooks has a long road ahead with some heavy chemo-therapies coming up. We are but one month into our eight month intensive treatment plan. I will always ask you to keep him in your prayers…they are working!

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The PET scan showed no areas of suspicious activity; however, this test is not as conclusive as the bone marrow sample. We were excited with it’s promise but we did not allow ourselves much of a celebration. We were still holding our breathes.

The May 5th test (bone marrow sample) would yield more conclusive evidence to how well the treatment was working. The results would not be available immediately though as the harvested cells required further study from those revered scientist.

The reason they take samples of the bone marrow is because lymphoma cells begin in the bone marrow (where blood is produced).
“Stem cells in the bone marrow mature and develop into three types of blood cells: red blood cells, white blood cells, or platelets. In most blood cancers, the normal blood cell development process is interrupted by uncontrolled growth of an abnormal type of blood cell. These abnormal blood cells, or cancerous cells, prevent the blood from performing many of its functions, like fighting off infections or preventing serious bleeding.”
On the day of the bone-marrow sample, we didn’t make any announcements on Facebook. I didn’t want to overwhelmed new feeds with our struggles. I didn’t know how many people were eager for ANY update about Brooks’ health.

I do have a couple of photos saved from the day:

In the first (below), you can see him sleeping, helpless and angelical, after the procedure. They took samples from his pelvic bones. His hips were bandaged and certainly tender.
bone marrow sample
The next picture is right before bed. Brooks is wearing his sleep sac and we are snuggling in bed. We are relieved to have the two procedures behind us but dread of the future’s difficulties is heavy in our souls.
bms day1
With that, I have reached the end of this post. That wasn’t as hard as I thought! I am, in fact, now happy that I took the time to revisited these moments. Perhaps I will keep the ball rolling to write about the next cancer crusade (Brooks’ first unplanned hospital admission). Perhaps I will finish one of the other more lighthearted tales upon which I’ve been working and share that instead… You’ll have to stay tuned to find out. 😉


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

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