Sometimes Chase remembers that things change as he grows and sometimes he doesn’t. The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary. He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me. “Mom, stop talking. Please don’t say anything else. I need to breathe. No more talking… I need to breathe in and breathe out right now.” And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.
The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle
In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart. One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis. I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.
Being perfectly still
This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends. By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there. Three years have nearly passed and this is still how he prepares for a hospital day.
Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. And I got to hold his hand and not hold him still.
Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.
Sleep finally wins
When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack. They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.” And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.” He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls. And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug. Those are the good moments to breathe in.
Chase and his “favorite doctor in the whole world”
And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.
For now we await results. No matter what comes of this, we’ll breathe in, breathe out, and take it…
As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks. March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.
“Take a survivor picture of me, Mom!”
One of our favorite events has been visiting schools in our district for shave events. Watching children donate their hair for other children takes my breath away. There is no guile, just love and caring with the greatest commitment. The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet. I can’t blame him – I was a little terrified too. However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.”
Talking about St. Baldrick’s at Madison Elementary
In some ways, March has really been a month about hair. We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his. It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head. We all thought he looked awesome. We all thought he knew. It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area. “I want my hair to look like Aidan’s! It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.” This was the first time Bob and I have ever heard Chase voice discontent with his differences. It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.
It was during these same weeks that I received an email from Chase’s school about hair. Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened. And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.
Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase’s class about cancer life.
Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game. I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around. He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.
It was also during this time that Chase lost a cancer friend. They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so. And that losing season brought up lots of questions for him again. One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty. Some day, I will write about this conversation, but today, I can’t. There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end. To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.
Early morning checking in on Rusty via Facebook
Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring. He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit. It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule. All of these symptoms can be normal, or they can be very not normal. Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer. We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent. And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question.
But for today, in this moment, he’s fine. In fact, I recently found him hiding under the desk in the living room with his father’s electric razor trying to give himself an even more bald head. So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…
One of the things that our family loves to do is promote the work of Chase’s hospital, Lurie Children’s Hospital of Chicago. The treatment that Chase had there saved his life, and the doctors, nurses and staff of the hospital are the top in the world.
Because of this, we try to help the hospital in any way that we can. This year, that includes dusting off my running shoes, training for several weeks using the aptly-named “Couch to 5K” app, and running in the Run for Gus, an annual fun run along the shore of Lake Michigan in Chicago.
The run was started by the family of Gus Evangelides, who lost his battle with brain cancer in 1995, just three months shy of his second birthday. Today, his family, and dozens of other families from Lurie, run to help raise money to fund brain cancer research at the hospital. Over the years that the Run for Gus has been going on, it’s raised millions of dollars to fund brain cancer research at Lurie.
This run has been a tremendous opportunity for our family to give back a little to Lurie Children’s. Brain cancer is one of the leading causes of cancer deaths among children, and fatal for almost half of the kids diagnosed, but there is painfully little research being funded to help stop it.
With some exciting new developments in cancer research on the horizon (see here and here), Lurie researchers could be just a short time away from making significant discoveries toward finding life-saving treatments for kids like Chase.
I hope that some of you might be able to join us in the run on July 24 (even to cheer us on), or help me raise money for the hospital by donating toward my run. You can do either by visiting my personal page at the Run for Gus website: http://foundation.luriechildrens.org/goto/ewoldt2014
I hope you’ll join me in supporting this worthy organization!
I used to write about trips to the hospital that were mere hours apart, but since the holidays, we’ve been incredibly blessed to make the drive only once a month. A whole month! That’s an obscene amount of time away from the hospital! We are so thankful because our time away means that Chase doesn’t need that kind of care, but we also miss it…just a tiny bit. The facility became our home away from home and the staff became our companions. The rituals we formed there were comforting and secure, so there’s a small part of us that misses it. …but just a small part. Once a month, though the chemo is done, Chase needs an antibiotic to keep his body safe from the port – an otherwise foreign device surgically implanted under his skin that will stay in place for months to years as it’s still used for medications on occasion.
This last week was our once a month visit and it began with the checking in. When Chase was truly ill in the worst months of his treatment, he would lay in his stroller and pull the canopy over his head to keep LaToya from flirting with him as she checked him into the computer and prepared a red (signifying his platelet allergy) bracelet for his wrist or ankle. Now, even though he feels better, he still “hides” from her and flirts outrageously as she laughs and calls him “Mr. Chase” and treats him like the only child in the whole hospital.
After checking in, Chase walks around the corner to a height and weight station. Here, his chart is handed to one of the nursing assistants who will walk him through getting his height, weight, a blood pressure check and his temperature. This is the moment I dread… You see, Chase fights these tiny, harmless things far more than he does surgical procedures. The CNAs take every effort with him, but Chase fights it tooth and nail…every time. Because the two surest ways to get Chase to do anything are to tell him not to do it or challenge him to do it, we “race” for the vitals. One parent stays to help Chase focus while the other takes off at a run to do a lap around the entire oncology floor. The parent doing “the lap” has to try and get back to the height and weight station before Chase finishes his vitals. Of course, the parent chosen to run never beats Chase and always comes through the door right after Chase finishes vitals as he jumps out of the station and into the hallway -usually brandishing a thermometer wildly in hand- screaming “I winned you! I winned you!”
Chase and Bob doing vitals in June 2013
After this display that undoubtedly leaves staff wondering if we should all have our heads examined, we are taken to the other end of the floor to the infusion center or “day hospital”; a large area full of small rooms (not unlike bays in the ER) outfitted with reclining chairs, TVs, etc for patients who need treatment that doesn’t require overnight admission. Our times here can range anywhere from a 30 minute platelet transfusion to hours and hours of chemo and pre/post chemo hydration.
When Chase was in treatment, he was always “accessed” (the needle was always in the port), so they could just hook him up, but now that he’s healthier and “deaccessed”, he’s crabby and whimpering with each new staff person that passes through the sliding glass doors of our room as he knows that somebody has to put the needle in his chest and he hasn’t figured out who it is yet or when they’re going to do it. I introduce him to Emily, his nurse, the woman who will “access” him today, and encourage him to talk to her about what’s making him scared. She tells him what she has to do before she’s ready and gives him about ten minutes before it’s time. He whimpers and sucks his thumb, but we keep him busy. We decide to run out to the waiting room and raid the kitchenette for some graham crackers. The key to managing Chase’s energy (from fear or otherwise) is just to keep him moving. On our way through the halls, we run into his beloved Miss Lauren and Dr. Rishi. Chase hugs Lauren and gives Dr. Rishi a “fist bump”. My heart is always full when his primary team get to see a healthy Chase in a healthy interaction. They know all too well the kicking, screaming, hysterical Chase and I love when they get to see the other side of it.
Chase with Dr. Rishi and Miss Monica (another beloved nurse) in the infusion center in November 2013
Little about accessing Chase has changed since I last wrote about it. I don’t know that it will ever be easy for him, and I don’t know that I’d ever want that. Chase was born to fight. He begs me to pray with him because he knows I’ll never say no to that and he knows that praying will delay the needle going into his chest. Emily bows her head with us and echoes our “Amen” as we finish praying for his heart to be calm and her hands to be sure. We still hold his arms and legs. He tries so hard to be still, but the self-preservation instinct is just too strong. So, we protect him from himself and for himself. And he knows…he knows the exact moment of the procedure that it becomes less scary and that his arms will stay open and not close protectively on his chest and then we can let go, and he’ll let out a shaky breath and smile and say in a voice extra squeaky from screaming: “See? I’m okay! I can do it by myself! I’m so brave!” And there’s the rush of relief as the tube from his chest turns red with his blood – the sign that the placement was sure and true. The tape goes on and then his shirt, and now he’ll be friendly to everyone he sees.
His antibiotic is sent up from the pharmacy. It will run through the tubes for almost two hours and it’s protocol requires bloodpressure checks every 15 minutes. That’s right. Every 15 minutes. The nursing assistants all know Chase and all have wonderful senses of humor, so sometimes we watch a movie and sometimes we race and sometimes they bring a portable machine into the playroom down the hall and get him to hold still as he rolls matchbox cars across the floor. And if the number is too low or too high, it must be repeated, so as you can imagine, for a child as active as Chase is, it’s usually a “best three out of five” scenario…every 15 minutes.
Playing with Grandma in the playroom, Summer 2013
Almost as often, he needs to be reassured that the needle will come out when the medicine is done…that his “butterfly” (his name for the huber needle – as when it lays on his chest, the flattened handles resemble butterfly wings) won’t be coming home with him…and that he won’t have to sleep in the hospital that night.
We greet the staff and catch up as if we’re old and dear friends. We talk with his nurse practitioner -after coercing her into carrying all sorts of playroom toys back to his room- and Chase asks her to pray with him about his cancer. We talk to the doctor that we don’t usually see, but who’s studying Chase and others like him to see how chemo and flu vaccines interact. So many good conversations. So many dedicated people.
Then the syringe pump beeps it’s two minute warning and the tubing is ready for the “flush” and suddenly, it’s time to take the “butterfly” out. Chase screams a little and needs his hands held, but nothing compared to when it goes in. He wipes the tears from the corners of his eyes and -virtually bounding off the bed- thanks Emily and makes a run for the door.
He jovially calls goodbye to everyone in the halls and as we pass the conference room where the doctors convene, he spots Dr. Rishi and turns back to say goodbye. Chase speaks for a moment and then, turning on his heel, breaks into a run, prompting the doctor to look worried and call a warning after him. Dr. Rishi knows all too well what happens when Chase starts running in a hospital. (hint: it usually ends in his signing orders for Chase to have an MRI…)
On the way back downstairs, we stop by the inpatient floor and look for Courtney and Ashley and all his nurse friends from the days of sleeping in the hospital. He finds “his Miss Courtney” and pretends to be shy, but after a minute, he warms to her and every other nurse he sees, and before you know it, he’s practically running for mayor of 17 North.
We take the elevators all the way down and he begs to ride the wide-open escalator under the whale to the first floor lobby. As Bob gets the car, we ride down the escalator, and then back up, and then down one more time just because we can. And through the glass walls, giant snowflakes fall on the city.
Riding the escalator on a visit with Grandma Judi, Fall 2013
So many friends, so many tiny rituals and habits in our home away from home…
Our once a month hospital visit… Moment by moment.
In the car on the way home this week – see the soft lines around his head? His hair is growing!
And I got to hold his hand and not hold him still.
