I’m not sure if it has been a long time or not. Life is funny that way. Sometimes time expands, and other times, everything collapses into a single moment. Eli is now off treatment, and has officially reached “survivor” status. He has withstood hospitalizations, surgeries, infusions, transfusions, injections, medications, reactions, decline, recovery, and is now on the other side—strong, healthy, and full of curly hair again.

Do we stop to look back or just move on? It’s not so simple. Diagnosis and treatment encapsulated some of the most formative years of Eli’s youth, so although the details and chronology of everything are sometimes vague, there are sharp recollections that come up often. And we have to meet them head on—to understand what he, what we as a family, endured. The long-term effects of treatment are a reality that we are still working through and will most likely work through individually for the rest of our lives. This experience has reshaped our perspectives, affected both physical and emotional health, and challenged us in ways that are indescribable. Yet, through it we can celebrate the moments of joy, thank God that Eli is with us, marvel at the strength that family and community provides, and take each day, each moment, one at a time.

I sit here considering this week’s follow-up evaluations. He’s doing great. Are there risks in the future? Yes, as there would be with anyone. What are any of us guaranteed? In this moment, the sun is shining, the sounds of video games pervade the house by our survivor, and we can rest. And for this moment, that is enough.

We have hit Maintenance. This is the phase of treatment that will remain consistent for the next 3ish years as Eli continues his battle. Thus far we have been lucky, comparatively, with few hospitalizations. The late summer was rough as he underwent Delayed Intensification—a shock and awe barrage of meds to knock lurking cancer cells out of his system. He lost his hair again and was very ill from side effects, but with his indomitable spirit and humor, he Minecrafted, built Legos, watched his YouTube heroes Zak Scott, DanTDM, StampyLonghead, and Rizzial, and Minecrafted some more. He also felt well enough to attend the outer-space themed mother/son dance, where he and I dressed as Darth and “Mama” Vader. Many cookies were consumed by his galactic might that evening.

October was a month of adventure. Our family was invited to attend the Camp John Marc oncology family retreat weekend where we fished, took a cooking class, zip lined, painted crafts, and made s’mores around a campfire under the stars. The weather was beautiful and getting to have a real outing as a family and meet others fighting similar battles was healing in so many ways. Since we were at the same host site as Eli’s summer camp, he was able to retell events and show us his cabin he stayed in. The pathways were paved with bricks with hundreds of children’s names and the dates they had played under those same trees . . . children who fought and continue to fight just like him . . .

On Halloween he was invited to participate in a televised fundraiser at WFAA, hosted by meteorologist Colleen Coyle, to benefit Cape Day. He dressed as Superman and charmed all around him as usual. Everyone at the studio was so kind to us—for which I am grateful. Having a rambunctious child on live television is a daunting thing, but he did a great job and loved being on camera, exploring the studio, and talking about tornadoes with Colleen.

Afterward, he was able to Trick or Treat at the Stars arena executive offices. HopeKids organized the event, and those in the offices decorated their zones in different themes, allowing the children to trick or treat throughout the three levels. He was elated and exhausted by the time we got home, but regained his energy and was ready for another round when we went trick or treating in our neighborhood later that evening.

Now that we are in Maintenance and he has had his flu shot, he can begin to go places within reason and feel like a regular kid again . . . his hair is already starting to fill in quickly, and next week he will be starting back to school half days to build his stamina up for full days in the new year. He got to go on a field trip and meet his classmates earlier this month to make the first day a little less scary. His new Minecraft backpack is ready to go, and hopefully he will be too.

We can start building our new normal. These past 10 months have felt like being trapped underwater, only able to feel things directly within reach with the vague indication of light in the distance. To all our friends and family who reached into the depths to find and help us—we are thankful for you. Happy Thanksgiving.

We finished Interim Maintenance last week, a two-month(ish) stretch that had scheduled hospitalizations for chemo. Some included a spinal tap, some didn’t. It’s all starting to run together a bit now, to be honest. The chemo that was administered was rough on Eli. Made him sick like clockwork, but once we were home and it was out of his system, we started to see the real him again for the first time in a long time. We got to enjoy our summer together—or at least enjoy it more than the past few months. We swam at friends’ houses, and even got to go to a few movies. I’m so glad Eli was in this phase for summer because the movies he had been looking forward to seeing were released (Teen Titans Go! to the Movies, Winnie the Pooh, Hotel Transylvania III). Crowds were still a no-no, so we went when the theater first opened for the early matinee and E wore a mask unless sitting down and eating popcorn during the movie.

While in the hospital, we figured out ways to occupy our time—lots of youtube Minecraft videos, movies, popcorn, legos…energy levels spiked and waned so it was oftentimes difficult to anticipate what would be needed for the three-day stretch. Sometimes the need for entertainment was incessant. Others were more low-key, so we just cuddled in the hospital bed. E always looked forward to the therapy dog visits and started collecting their cards. The Roughriders also paid him a visit with Teddy the mascot, and volunteers stopped by frequently with gifts of soft blankets and snacks.

As August grew closer, Phil’s and my apprehension grew because the next phase was Delayed Intensification. It was heartbreaking to talk to Eli about the new meds he would have to take and how he might not feel so good for two months only to have him laugh and say, “I won’t be sick, Mama, I feel good!”

But during that “good” time he got to attend Camp Esperanza, a week-long camp for children undergoing active treatment for cancer. He got to be a normal kid. Not the sick, bald kid as he sees himself at home, but rather someone like those around him, having fun ziplining, horseback riding, swimming, fishing, and running around. He came off that bus dirty, smiling, and wearing someone else’s pants like a man coming off a weekend bender. It was the best thing I had seen since this all started.

And now we have started the new phase. Meet the Teacher night has come and gone, as have the first and second days of school. “Eli Monkey” is trekking to school once more with Sara while the happy, energetic Eli of the summer slowly fades. It’s worth it. We know it’s worth the fight and the pain because this phase is supposed to increase survivability and decrease the chance of recurrence. But what you know and what you feel can be vastly divided. Despite how hard the steroids and additional meds and chemo are hitting him, Eli still smiles. Still laughs. Still talks about growing up to be a Daddy…

Two more months. One day at a time.

The two-month-long Consolidation phase is over now. We learned a lot together. I learned how to give injections, and Eli learned that he would get a Minecraft toy after I gave him an injection. Oftentimes it’s the newness of things that is the most frightening. Things often hurt the worst when you don’t know what to expect. Humans seek to normalize situations and find patterns. When certain treatments are recurring, I am thankful for that because E adjusts quickly when experiences can be remembered and expectations can be set.

During April and May, there were times of hospitalization risks, meaning that E’s body would respond to the treatment by becoming neutropenic. Neutropenia (at least from what I understand of it) essentially means his body is not equipped to stave off any sort of infection or virus. This is determined by the ANC (Absolute Neutrophil Count), which is found through lab blood draws (less than 500=neutropenic; we went to 0). If Eli presents with neutropenia and a fever, it is an automatic hospitalization until his body has recovered. Because of this, we landed in the hospital for 10 days in April, first precipitated by a fever, then prolonged by recurring fever, persistent pain, and signs of possible infection or reaction (hives, nausea, etc.).

During the April hospitalization, antibiotics were administered through his port, and when symptoms persisted, the next wave of tests and meds were administered, with an IV antifungal med, ultrasound, chest CAT scan, and nose probe. All of these were scary to Eli, because again, the unknown oftentimes hurts the worst. Thankfully all tests came back negative and nothing grew in the cultures so we could go home once his body had recovered, fever had subsided, and counts rebounded.

May was endurable—a lot of symptoms presented themselves, such as nausea, neuropathy, fatigue and weakness, etc., but for the most part, we have figured out ways to control the pain and discomfort. Eli has clinic weekly, where they check his counts through blood draws, determine if a transfusion is needed, and administer scheduled chemo meds that cannot be given at home.

Unfortunately on May 23, Eli had an anaphylactic reaction to one of the meds. He suddenly got uncomfortable and began crying, saying he couldn’t breathe. Within moments his face began to swell up and he began choking. His team responded quickly, administering oxygen, IV benadryl, and Epi pens. Between the burning in his stomach this process caused, the terror of not being able to see or breathe, and the discomfort of having his lips swell up exponentially, it took quite some time for him to calm down. To make sure there wasn’t a second-wave reaction, we were transferred by ambulance to downtown for overnight observation. Thankfully there was no second wave, and Eli made sure all who entered his room knew not to give him that specific med again.

Apparently the reaction is common to this med, and generally does not present itself during the first administration. However, since it is another way to slow the growth of cancer cells and since port administration is the quickest (and easiest way sans reaction), it is beneficial to try. We just drew the short stick on that one. It’s the preservative in the “Peg” (peg asparaginase) that causes the reaction. Because he can no longer receive the Peg, a different med will need to be administered via six rounds of shots per every port infusion he would normally receive for this one med. There is currently a national shortage, so hopefully his supply will be on hand when it is next needed.

It’s now easy to see why so many of the people we meet during his care have either had cancer themselves or had a child who did. Once you gain all of the knowledge, what do you do with it when the treatment is done? I hope that one day all that I have gleaned from this will help someone, and not just what to never order from the hospital cafeteria.

We have entered a blessedly low-maintenance phase of treatment called Interim Maintenance. This, too, will be a two(ish)-month phase, consisting of four scheduled hospitalizations during which heavy doses of chemo will be administered via Eli’s port. Each hospitalization is count dependent, so delays can happen. We are actually currently in a delay right now…waiting for Eli’s counts to recover. He has been neutropenic for almost the last two weeks so was unable to have his first hospitalization this week. So we wait, enjoy the summer moment by moment, and look forward to better days.

 

The Induction Phase ended on Friday, March 23, and biopsies showed that “forced remission” from the intense month of chemo had occurred, meaning that less than .01% of leukemia cells were present.  This percentage was an important milestone in Eli’s treatment, because it indicated whether or not he was responding to the chemo. If the biopsy showed .01 or higher, there was a possibility that we would need to start looking into alternative therapies. Thankfully, our current course is working, and we can breathe a little more easily going into the next two month phase of Consolidation.

“Remission” can be a confusing word, often associated with “cured.” Within the next three and a half years, we hope to firmly inscribe that word into our story; however, there is still a long road ahead. The next six months promise to be harrowing. We had our first blood transfusion today with multiple ones to come as well as emergency and scheduled hospitalizations, weekly chemo treatments, and daily home medications of pills, injections, and fluids.

This past month has been once of stealthy turbulence. There was a week of intense hair loss—more and more hair being found in the shower, coming off on towels, the pillowcase, clothing…we took the route of a home buzzcut within a few days to make Eli more comfortable. Lysol, hand sanitizer, and antiseptic wipes are readily available in every room in hopes to lower risk of infection. We know sickness will hit at some point, but we try to take every precaution possible.

After today’s transfusion, Eli’s energy bounded back. He stated that he had forgotten what “fresh air smelled like” and for the first time since this all started, sat in the back yard for a while to watch our new puppy play and enjoyed the breeze. Those fleeting glimpses of health give us promise of days ahead. While at the clinic this morning, Phil had noticed a bell with an inscription for children to ring it upon completion of their last treatment. We cannot wait to hear that bell.

Today Eli turned seven. We stayed in, having strung up pictures from Zelda Wind Waker to make the day festive. I knew Eli liked them because he immediately asked to play that game this morning. His favorite foods were assembled, and as random as they were (pizza and quiche florentine), the meal was absolutely delicious because he was happy.

Presents were opened, cake was eaten, and we held his smile tightly in our minds.

These past few weeks have been tough. Learning medicine names, administration schedules and symptoms to watch, what his diagnosis means . . . so many things carefully highlighted and annotated. When we were getting ready for discharge last week I mentioned to one of the nurses that one of the hardest things about that day was that you have an ingrained expectation to take your child home healthier than when they entered the hospital.

And now he is so tired. We are looking forward to getting past phase one, called Induction, because his system is being hit hard with meds to force remission.

Steroids are part of Eli’s daily chemo and they make him ravenous. If he’s not eating food, he’s thinking about food, or wanting to make food if he has the energy. There’s really no way to anticipate cravings either—and they are intense. A tearful 6 a.m. corndog demand (when he hasn’t eaten a corndog in over a year) is not out of the question.

As exhausted as his little body is, he looks forward to the surprises our community provides for him. Neighboring children send him encouraging notes and drawings, deliver a beautiful box that explodes with balloons when opened; teachers and classmates FaceTime with him to read a special story and sing Happy Birthday to him, and every day his sweet big sister, who is growing up so much faster than we wanted her to, dresses a stuffed monkey to go to school for him as a reminder that he will be back one day.

Friends take time from their day to bring us food and encouragement, to send the kids treats and presents, and through it all, they serve as reminders that God has not abandoned us, that He is watching over Eli.

That knowledge has helped us the past few days because on Friday, Eli’s labs showed that his body is not responding to the treatment as quickly as his oncologist had hoped. His treatment will intensify in the months ahead. We have been counseled on how to be prepared for future hospitalizations and ER admittances, to take the mentioning of transfusions in stride—but I don’t think one can truly ever be prepared.

I do, however, now have an abundance of corndogs in the freezer. And today—despite it all—was a fun day.