Category: MPS IVA

Running on Empty

We’ve had a whirlwind of fun in our family this week.

First, an exciting (albeit frigid) trip to Toronto to cheer on 13-year-old Campbell and her hockey team as they competed in the International Silver Stick Tournament. We enjoyed the hockey hall of fame, ate poutine, fell in love with Tim Horton’s, visited Niagara Falls, and did each step in the warm embrace of our hockey family. Oh, and we watched hockey. We cheered with every ounce of our soul. As parents, I argue that we experience more stress watching than the girls do playing hockey – although I’m sure they burn more calories. We want so badly for each of them to succeed, to be proud, to win. I swear I have a new heart condition from being a competitive hockey parent. Which is competitive, the hockey or the parent? I’ll let you decide.

The day after our return (Tuesday), Cooper, Velocity and I made the trek to Fort Collins, visiting Colorado State University’s chapter of Canine of Companions, Collar Scholars. Collar Scholars are CSU students who raise and train puppies for Canine Companions. It was Cooper and I’s first time visiting a Collar Scholars meeting, but guess what? Velocity was raised at CSU, so this was a return to her alma mater. She was a rock star, on her best behavior. I shared our journey – Cooper’s rare disease, his surgeries, appointments, infusions, struggles, and why he qualifies for a service dog. Cooper spoke to a room full of college students as if he had been practicing for it for years. We thoroughly enjoyed our visit with both the people and the puppies.

I guess we could say it’s Cooper’s first college visit? Check it out:

Wednesday afternoon, Cooper and I visited DJs Slacker and Steve at Alice 105.9, to participate in the Alice Cares for Kids Radiothon benefiting Children’s Hospital Colorado.

Coop and I had met with them previously via Zoom, sharing our entire story. An audio montage was created from the Zoom call. I had the opportunity to listen to the montage prior to Wednesday’s visit, and I’m glad I did. I cried big, gut-wrenching sobs. Every time I share our story, it’s like picking at a scab. Remembering all of the appointments, the heartbreak, the fear and the diagnosis digs deep into the past, into my heart, into my head. Hearing our montage, the scab came off – way before it was healed. (It’ll never heal.) So Wednesday night we visited for the on-air interview. Prior to the interview, they played the montage. I’ll let you listen. It was a really fun and special event.

Montage of our journey:

Live interview:

ps. I’m sorry Cooper said he doesn’t think the Avalanche will win the Cup this year. I just hope we aren’t run out of town for his comments. LOL

So, as you can imagine, I’m a bit drained. The week has had intense emotional swings that have taken a t toll. I occasionally nap during the day. I’m exercising, drinking water and making sure I fuel my body appropriately. I am held tight by those who lift me up, but my soul is tired.

My task is not complete. My task will never be complete. Our journey won’t be hidden, forgotten or swept under the rug as “a bummer”. I share our journey to educate, to teach empathy, to embrace others with a similar path.

The last day of February is Rare Disease Day. I’ll participate in Zoom calls with our legislators and share our story again. I’ll ask for legislation that will help people with rare diseases. We’ll “celebrate” it at Cooper’s school and raise awareness there. I’ll draw energy from the excitement and then crash. And then do it all again (while cheering on Campbell, because I’m her mama too.)

Life Has Impeccable Timing

Today I held back tears as I watched Cooper walk into school. My 10 year old’s awkward gait and short stature really struck me as the sun accentuated his silhouette on the way to the door.

He’s now recovering from two surgeries – the spinal decompression and fusion in July as well as the hernia repair last week. As far as the hernia repair goes, Cooper can do whatever he feels up for, but the spinal fusion is still holding him back – no twisting of the spine/back allowed. Which means he still can’t play hockey, swing a baseball bat, or get into a basketball game with his buddies. He’s sad about missing his favorite sports. He tearfully wishes, “I just want to be like everyone else”. From my viewpoint, Cooper’s short stature is his biggest heartbreak. He wants to be on sports teams with his peers. No matter the size of his will and heart, he can’t keep up with competitive kids 18″ taller than him, and at this point, his spine isn’t ready for activity with other kids yet. Every day my heart breaks for him, but especially today.

An hour after drop off, this popped into my inbox from Children’s Hospital Colorado Foundation….

Yes, I have more than 400 unread personal emails. I just need a few moments to catch up on life…

But the article makes me cry. It’s beautiful, and it’s beautiful because it’s our story. (Click the title below to read it)

Child Life Specialists Help Cooper Feel at Home

And darn it – we won’t see those Child Life Specialists or any of our nurses this week. I don’t know when we’ll see them next. We’ve decided to move to home infusions. The Children’s Hospital Colorado system is so inundated with sick kids (lots of RSV), that Inpatient has taken over the Infusion Center space at the South campus hospital. So if we want to bring Velocity to a hospital’s Infusion Center, we need to go to North campus’s Infusion Center, an hour away.

Nope. I’m done.

We’re moving home. A nurse will come to our home and give Cooper his infusion there, hopefully after school. No more missing school. Definitely no more driving. Sweaty time won’t be confined to our room. These are all good things. But we’re going to miss the community at South campus. The community who wrapped their arms around us, stood us up and made us laugh for the last 5 years.

Moving to home infusions isn’t a simple task. From what I understand it’s an impressive amount of paperwork, approvals, insurance letters, and doctor’s responses. We hope to be set up for home infusion sometime in December.

So this is an ode to our medical community. We are eternally grateful. We love you and look forward to seeing you inside or outside the hospital very soon. And if we are outside the hospital, oh the fun you can have with Velocity!

Please consider donating to Children’s Hospital Colorado’s Child Life Services on behalf of Cooper and his friends at infusion. They’ve made a world of difference for Cooper and our family, and do so for every child they connect with.

Tunnel Vision

On this roller coaster of rare disease life, I’m embarking on a long dark tunnel. We just came up a huge hill and had fun spins and splashes, but it’s getting dark and scary again.

Monday Cooper will be re-doing his MRI – this time with anti-anxiety meds, and a time slot meant for sedation, so we won’t be rushed. Later this week he’ll have a dentist appointment (hello anxiety) where he’ll hopefully be cooperative enough to let them clean his teeth and peek at the baby tooth that has a cavity/infection that’s been painful. Last but not least, he’ll have infusion on Thursday. The “exciting” part about infusion this week is that afterwards (while his port is still accessed), he’ll have a dye study. The dye study should show us what’s going on with his port and why it’s so hard to give him his medicine during infusion, usually requiring TPA (what I refer to as “medical Draino”).

How’s Cooper handling it all? Eh, not great. I know he’s nervous about the MRI (they are uncomfortable and last time he was so upset he had body shaking sobs during it, making the MRI unreadable). I can be happy and supportive and the most optimistic crazy person you’ve ever seen for the appointment, but it’s the results of the MRI that have me on the edge of my seat. I’m fulling expecting to spend this summer in some sort of “surgery mode” for him, so any results requiring less than major surgery will be a pleasant surprise. The dentist appointment could go either way. I’ve seen him get his teeth cleaned like a champ, and I’ve seen him loose his cool – so it’s a toss up. Infusion will be fine, but new things are always scary, so the dye study afterwards will have him anxious.

In the meantime, we’ve chosen to live life to the fullest. Spring Break = beach, hockey games and skiing.

Spring break fun at Newport Beach

For the last 10 days I’ve been putting off the reality of the upcoming appointments, but on the last night of spring break, they are weighing on my heart. I’m restless and depressed. I don’t want to do this anymore. I don’t want more appointments pointing to more problems. I don’t want more unknowns. I don’t want Cooper to miss school. I don’t want him to be sad and anxious.

I’m trying to make up for next week in advance – let Coop stay up late watching TV with me, and crawl into my bed in the middle of the night. Then I watch him sleep and I pray that we are making the best decisions for him, and that he is as happy as he can be. And in trying to make him happy, is there a cost to the rest of the family? Campbell feeling left out or that she has more rules than Cooper does? Brian doesn’t sleep well when Cooper crawls in our bed. I know I certainly don’t. I guess this is how a special needs family works around the special kiddo – it’s a balancing act. This evening’s balancing act is me identifying and expressing my emotions in writing while watching Cooper sleep – sideways in the middle of the king bed (a very fitting analogy for this moment).

I believe Cooper doesn’t intend to have our life revolve around his needs, but it does…

For this part of our balancing act, I pray for patience, grace, bravery and strength for both Cooper and I.

Today Was Rough

And I can’t sleep.

While at infusion today I envisioned a blog post about how things are great, and I’d casually mention I broke my ankle three weeks ago playing floor hockey with Cooper. And he’s doing great, so excited to be on a baseball team this summer. And Campbell is happy, completely enveloped in ice hockey and loving it. And my ankle is healing. The walking boot has slowed me down, but with all the playoff hockey on, it’s OK to put my foot up for a while.

But I didn’t blog because I was too busy playing NHL ‘18 on the hospital’s Xbox with Cooper. Or watching him play. It’s his new favorite thing to do while at infusion all day, since he doesn’t have school work (or arguing about doing school work) to take up the time.

Check out the bottom left – Cooper created player #18, Cooper Tippett

It’s been a long time since we’ve had a rough day at infusion. But due to the butterfly needle sitting a bit weird in his medi-port today, we had a couple awful moments. Pressure on his port from trying to hep-lock him made him go through the roof. The pressure of the infusion all day was just fine – but the pump wouldn’t work with the syringe of heparin, which meant we had to hold him down, peel off the dressing (sticker covering the needle – always the worst part of infusion day), reposition the needle, push the heparin into his IV and then remove the needle and be done. As it’s always been, he’s so anxious about the process that the mere act of touching the needle and discussing what we needed to do made him so upset and frantic, he was literally sick to his stomach. So when we tried to comfort and distract him as our skilled, gracious and caring nurses maneuvered the needle, I had flashbacks of last summer when Cooper had his first cast removed, before his second hip, knee and ankle surgery. Last summer Coop screamed at the top of his lungs as the doctor started the saw – he thought they were starting surgery and didn’t realize/listen to the fact that they were only removing the cast. Screaming. Tears. “I can’t do this anymore!” “I don’t want to do this!” All again today.

Coop recovered very well. He held gauze over his blood spot as it dried up. His tears disappeared as he said goodbye and that he’d see everyone next week and play more NHL ‘18. We gathered our things and walked out of the hospital into the fresh air. That’s where Coop lost it. Just big tears as we stood on the sidewalk, waiting for Velocity to pee.

At home, Coop continued to feel better. He said he’s sad. I hear you buddy. I’m glad you’re not mad, or scared. I’m sad too.

So I’m heartbroken and I can’t sleep. Everyday I’m thankful there is a treatment for Cooper’s rare disease. I’m sad that Cooper has to live with it. I’m sad that Campbell has to live in his shadow. Campbell’s hockey gives her a place out of that shadow. Cooper’s upcoming YMCA baseball season will give him a place further from the medical rare disease space. But it will always loom near him. Like the fact that he’ll be playing baseball with 1st and 2nd graders, because they are the size of my 4th grader. He’ll make new friends with the kids, and he’ll be excited. But that takes care of this year. Next year he’ll be the same size, and the next year, and the next year. His problems and his differences won’t get easier or less noticeable. Just like today – we think we’ve got this infusion thing under control and we get a curve ball. Another reminder that I’m not really in charge, I really have no control over anything. It’s time to remind myself to put this in God’s hands and move on. Do what I can, and move on. Perhaps sleep.

Reflecting on our journey

On infusion days, Cooper can be found WIDE AWAKE long after his bed time. He’s happy and chatty. Tonight, he couldn’t fall asleep in his bed, so he grabbed his book and crawled into our bed to read until I could join him. He finally wound down and closed his eyes. As I watch him peacefully sleep after a long day at the hospital, with Rare Disease Day quickly approaching, my heart had some things to say…

Thank you Lord for this journey with Cooper.

For the empathy it continues to teach me.

For finding my voice as an advocate for Cooper, and figuring out how to advocate for myself at the same time.

For the compassion I have grown to have for people in all walks of life.

For the angels on earth we meet along the way – those who lift us up.

Please give me strength to fight the battles.

Please give me wisdom to know which battles to fight.

Please give me grace to be the mother I need to be for both Cooper and Campbell.

Please give me the energy, words and actions to pay it forward and adequately recognize and thank those angels among us.

Thank you for this journey. Please continue to show us the way.

Amen

This was supposed to be our Christmas Letter

Blank space.  Lots of blank space. An empty glass of egg nog (the good kind) and an empty Word document…Where to start…..  It’s time to write this year’s Christmas letter.  It’s one of my favorite parts of the season! But I’m not feeling it yet.

I start by reviewing last year’s Christmas letter.  I feel like this year didn’t happen.  We are right back where we were last year – preparing for a major surgery for Cooper.  Is this it the rest of our lives? Will we be continually preparing for the next big surgery?  (Catch up on how this is Groundhog Day on Cooper’s Caring Bridge site, look for June 3rd’s post titled Curveball. But the Cliff’s Notes version is this – Cooper was supposed to have hips, legs and ankles surgeries last summer.  We got to the hospital and found he had the beginning of spinal cord damage, so the surgery plan switched to spinal decompression surgery.  Now this summer is approaching and we’re “back to the future” preparing for the surgery we were supposed to have last year.)

I tell ya what, I’m ready for it.  Well, I don’t think I’ll ever be READY for it, but I know it needs to happen. 

Cooper and Campbell are taking ice skating lessons.  If you hear Cooper talk about it, he calls it “training”.  Ya know, because this kid has NHL (National Hockey League) written in his heart.  Lessons are 30 minutes, once a week.  Campbell is doing really well, loving it and ready for more advanced lessons, hockey pads and a stick.  Sweet Cooper is having trouble.  His knock-kneed stance, incomplete hip structure, misshapen spine and large chest cavity prove to be hard to accommodate on ice skates.  Getting up from the ice by himself is near impossible.  He can do the move on the living room rug, but can’t get it to work on the ice.  Tonight was the first night he repeatedly fell to the ice on purpose, just to rest his legs. The instructors offered to help him up, but he chose to sit there for a long while.  My heart broke.  He’s been able to overcome, or we’ve been able to accommodate, everything so far, but not here.  Not yet. 

So my heart knows this next surgery, to correct Cooper’s hip shelves and align his knees and ankles, is a necessity to give him the mobility this active kid desires. 

I have so much anxiety about the whole damn thing.  And again, it’s right where I was last year.  At least I have one out of state surgery under my belt from our adventure this summer.  I know the hospital and when the cafeteria closes.  I know where to order the good Italian food from.  I know a Wilmington Blue Rocks baseball game will cheer us all up.  I know to keep track of the pain meds as close or closer than the nurses do, because they are very busy and Coop isn’t necessarily their number one priority.  I know not to buy plane tickets for the trip home until we know when we’ll be able and comfortable to fly.  I wish I could say I knew where to stay.  The condo we called home last year has had management changes and is no longer doing short term leases.  So I’m on the hunt for a new place to stay near the hospital.  Must have full kitchen and ample space to accommodate the family, two of us who will bring work along.  Must have exercise facilities.  Must be wheelchair accessible.  That doesn’t seem too overwhelming.  Why can’t I get over it?

I think the unknown part of recovery still has me on edge.  True, we’ve done recovery with a neck brace, but Cooper was playing mini golf eight days after surgery!  Time to do recovery in a body cast this time.  The travel will be challenging.  Cooper’s seven weeks in a body cast will be the most challenging.  But we have such great support, family and friends who would stand on their heads to entertain Cooper if I asked them. 

I’m coming to the realization that I need to hand this preparation anxiety over to God and let my heart rest. That’s hard for me to do.  I have too many spreadsheets and checklists and where does God fit in?  I can pick up planning again in February and do the leg work, but I need the rest.  I need the happy elf-like Chris full of Christmas spirit and optimism to show up and write my Christmas letter.  She’s around here somewhere…..

Thankfully my friend Amber’s elf provided inspiration for our elf’s toilet paper snowflakes tomfoolery tonight.

Am I making this sucky?

I just realized today that things aren’t going to get better. Nowhere have I ever read, “Well, the first 7 years were tough, then we really cruised through this rare disease thing”.

It hit me when I pointed out a herd of elk across the street from the cabin we were staying at this weekend. Campbell had spotted them, and I pointed them out to Cooper. He couldn’t see them. They were these large, brown creatures, meandering about 200 feet away from us, and he couldn’t see them. I felt sick to my stomach. It’s starting to click. Yep, he fails the vision screening at school every year. Yes, he glasses for an astigmatism. When he wears said glasses, he says everything is blurry, so the glasses sit in a case in his bedroom. He has recently been diagnosed with the beginning of corneal clouding. This doesn’t usually happen to kids, so no one at Children’s Hospital can help us. We’ve got an appointment at University Hospital in November. I feel like we are opening a new can of worms on this one, and I’m scared.

But we aren’t all done with the last can of worms, now are we? Cooper’s (surprise) spinal decompression surgery was June 4. At that point we were told he’d be in a neck brace for 2-3 months. Let’s do the math…. carry the one…. yep, we hoped we’d be hearing we could be rid of that thing by now, four months later. Yet, the latest note from the doctor is something along the lines of “Things look good. Continue to wear the brace for car rides and high-risk activities, do more X-rays in FOUR MONTHS and we’ll review again”. I nearly puked reading that one. Cooper is an active 7 year old boy. I think most of his life is “high-risk”. Riding his bike, playing hockey, football, baseball and soccer in the backyard. Playing sports at recess. Swimming and wanting to ice skate. Participating in PE. Occasional scuffles with his sister. Maybe the doctor didn’t expect Cooper to be such an active kid and that “high-risk” activities weren’t on the agenda. I should feel blessed that he’s an active kid. I should feel blessed he isn’t really bothered by the neck brace. He remembers to put it on, he can do it by himself, and he knows when he needs it. (We’ve been living by the “high-risk activities” rule for a month now already.) At the beginning of the school year, I told Cooper he could take the neck brace off for his school photos. He forgot to, and didn’t care that he had it on. I’m not going to have him retake the picture without the brace. This is real life, and where he is right now. And he’s happy. Apparently Brian and I are the ones who so desperately want the neck brace gone.

All of this swirling though my head as we now have new dates for this summer’s surgeries for Cooper’s hips, knees and ankles. This part sounds like a broken record, I’m sure. This is the exact same place we were last year, preparing for this surgery before we found the severe cervical stenosis that forced the spinal decompression surgery instead of the hips, knees and ankles last summer.

It’s a lot to process. But at the same time, I find myself needing to adjust my filter. When Cooper gets mad at Campbell for something that seems ridiculous, I ask him, “Are you making this sucky?” I try to point out that he can be angry at things, and it can suck, or he can let it go and it won’t be sucky. So at this point I ask myself, “Am I making this sucky?” Yes, it may be less than ideal, but I need to adjust my filter, because it’s not going to get easier.

Gut Check

I feel ashamed that someone else’s pure joy causes me such sorrow.

Today at infusion, I noticed a family with balloons, flowers, and lots of visitors. My mind tried to convince me, “it’s the little girl’s birthday”. But when they gathered in the corner outside our room and I heard the warrior bell ring, my heart knew the truth.

When I’ve heard the bell in the past, it brought tears of joy. Happiness and a sense of relief for the family that gets to move on to the next chapter with their little warrior. Today Cooper heard the bell, and said “what’s that?” I explained it was the warrior bell, and that the little girl got to ring the bell because she’s finished her last chemotherapy treatment. Cooper wanted to ring the bell. Through tears I told him he’d never be able to ring that bell. I was angry, sad, frustrated. I started to remind Cooper that his MPS diagnosis is life long, but when I looked at Campbell, she said, “You can ring it when we find a cure, Coop!” I high-fived Campbell for bringing the sunshine back into our room and sucked back my tears.

So I’ve been in a funk all day. It’s like I’m reliving diagnosis all over again. Wait, this is LIFE-LONG? For the rest of my life, and more importantly, for the rest of Cooper’s life, he’ll have infusion once a week. He’ll visit many, many specialists. He’ll have pain, probably several surgeries. He’ll look different. He’ll feel different. All things that make a mama’s heart hurt.

I just want him to ring that damn bell, I want him to be free. Time to work harder for a cure.

Tonight two of Cooper and Campbell’s cousins are over for a sleepover. They were all giggling in the room, tossing and turning, until they finally gave in to sleep. Campbell and the cousins see Cooper as Cooper, a sweet, passionate, sports loving, funny 5 year old. I need to pause and etch this picture in my mind: He’s a kid, who played with friends outside until dark, snarfed down homemade cookies and is enjoying a summer time sleepover, just like other little boys his age. This is what I want, to see him as Cooper, not the kid with a life long, devastated disease.

Reflecting on Rare Disease Day on Capitol Hill

This last February, I participated in Rare Disease Day on Capitol Hill. For Rare Disease Day – February 29th (the RAREST day of the year or the last day in February), rare disease advocates visit their legislators asking for NIH funding, we asked for MPS related language in the Appropriations Bill, and voiced our support of the OPEN ACT. This was my second trip to DC to participate in Rare Disease Day on Capitol Hill. It was logistically easier than the first time, but the second time provided emotional challenges I didn’t expect.

After my appointments with my legislators, I aimlessly wandered around the park outside the Capitol. I had done everything I came to do. I knew I wanted to take the following photo, and it surprised me that I had to choke back tears when I pulled out my “I advocate for #SuperCooper” sign.

I stalked a couple of older gentlemen lingering in front of the Capitol, and judging from one of the guys’ Wyoming baseball cap, figured they’d be friendly and help in my quest for a photo. Turns out one of them lived in Littleton and went to my rival high school. Small world.

This was my first take of the “I advocate for #SuperCooper” photo. Photo credit to the Wyoming guy and the Littleton guy, who should not be in charge of tourist photos, as evident by the landscape crew who appear to be standing on my head.

After parting ways with my photographers, knowing I would take a better photo later, I put my phone away and just stood there, dumbfounded. The tears were back, in full force. What was this emotion? Was I proud? Sad it’s over? Missing my family? In an attempt to clear my head, I aimlessly walked some more.

I’m a glass half full person, always have been. Telling our story – Cooper’s story, every time – it takes me back to reality. “Cooper is suffering from a rare, progressive, life limiting disease.” This is what I told every legislator I met with. As I see the other person’s face fall when I describe my 5 year old’s pain, and what is happening to his organs and his skeletal system, I bring them back up with, “He’s the biggest sports fan I’ve ever seen”. I regale them with tales of playing football, hockey and baseball in the hospital’s hallways on infusion day. Then I move on to how we are blessed that Cooper’s disease is one of the 5% of rare diseases that have a treatment. And I have faith the treatment is helping his organs. We’ll address the skeletal issues with big, scary surgeries. But we’ve still got Cooper, and he’s loving life. So I leave the legislators on a high note, because that’s who I am.

On this trip, I had time to sit and connect with parents who aren’t so different than I, but their son or daughter can’t play sports anymore, or is fighting for their life, or has gained their angel wings. The reality is back, and it can’t be fixed by a quick change of subject to Cooper’s sports craze. It’s amazing and inspirational to see the light that these parents bring.

In sharing with the other parents, we were often surprised when we heard they had OTHER kids! Unaffected kids. And then we cried together over the guilt we felt for overlooking the unaffected sibling. I am certain those siblings are going to be fine. Dealing with a rare disease brother or sister has given them a skill set that life doesn’t usually hand out.

I tried to digest all these thoughts as I wandered through the park. I realized that in order to get what we need for Cooper, and others like him, I must strip away the smiley emoticons, and remember the terror of diagnosis. I must share the tragedy of a rare disease. I need to be real. And the simple motion of pulling the sign out of my purse and reading the words made it all very real again.

I advocate for Cooper. I advocate for MPS families. I advocate for Rare Disease.

Photo credit: young lady who was snapping selfies and complimented me on my tennis shoes (that I have cropped out of the photo)

So for life in general, the optimist can come out and we move forward in a happy place. But when the medical decisions get difficult, when we need help from our elected officials, and when we work on how to support our MPS families, I know what the truth is, and how to address it.