WTH

What the Hell? I know life in general, let alone life with a child with a rare disease isn’t easy, but lately the shrug emoji is what I use most often to describe WTH is going on.

Two weeks ago Cooper’s surgery didn’t go as planned. As a matter of fact, it didn’t go. You can get details on CaringBridge, but after anesthesia, the surgical team stopped because the Neuromonitoring system lost signal on the right side of his body – possibly indicating spinal cord damage. It wasn’t bad, but it wasn’t good. We just opened a can of worms. And we have to muddle through all these slimy, entwined worms before we can move on. Cooper’s hernia bothers him daily – to the point of tears sometimes. His port is becoming harder to work with during infusion. The situation is becoming urgent.

The next step is to get an MRI on Cooper’s C-spine. Orders have been faxed in. I called and the radiology scheduler told me I had to go through a screening process to see if Cooper should go under anesthesia for the procedure. (Insert WTH and shrug emoji here.) I mentioned that Cooper did not need anesthesia for his MRI 3 weeks ago. I did NOT however tell him that the last time Cooper was under anesthesia he narrowly escaped paralyzation. Scheduler said, NO, the screening still needs to happen. I’m a rule follower. I know he needs to check the damn box before we get scheduled. So I was transferred to the “screening” number and left a message. 19 hours later and still no call back. The irony is that he shouldn’t go under anesthesia until we figure out what’s going on with his C-spine, hence the MRI! A growing circle of frustration right now. I’ll call again today.

In the mean time, let’s not forget about my oldest, the “unaffected sibling”. She’s growing up, she doesn’t want to talk with me about “stuff” unless it requires turning on the internet or ordering something on Amazon. I’m so stinking proud of her. Straight A’s, she gives her whole heart to hockey. She’s funny, and sweet (although I don’t get to witness that side much).

Campbell, #43. Watching her thrive here fills my soul.

My self care is struggling. STRESS EATING. There, now that it’s published, I’m accountable for it. Valentine’s Day treats didn’t help. But that’s over, they were delicious and I’m gracing myself. I’d like to work out again. I’ll get there – I threw out my back last week and with chiropractic help I’m getting back to normal. I want to plan a girls’ trip, I’d like to figure out family summer vacation plans, but my planning is paralyzed with fear until we get Cooper figured out. The next MRI is just a piece of the puzzle. It may lead to bigger things – bigger than the port and the hernia. It may lead to spine surgery. Which would mean another summer “vacation” in Delaware, and recovery at home, on the love sac, next to Velocity. Which is fine. We are blessed to have the right teams in place to help make decisions. I’m just a planner and this in between, waiting on checking the next box is torture for me.

I’m reading at night instead of scrolling on my phone. Check out “Present over Perfect”. It helps me slow down and connect with what is really important TO ME, not what is important to others. Which I desperately need. So in the vein of self-help, I’ll list what I’m grateful for: Velocity, home, my health, supportive family, community, out of this world friends, hockey, fun times, my job, modern medicine, garage door repair guys. You may ask, “Garage door repair guys?” Ask Brian about how I backed into the garage door. And now I’m slowing down? Perhaps I should have slowed down a while ago. But this is where I’m at, where we’re at. All I can do is make adjustments (chiropractor joke, hahaha), embrace the now and move forward.

Update: after speaking with radiology (thank you Caylee at CHCO radiology who heard my cry for help), we are scheduled for an MRI on this Friday!

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.

Celebrating Cooper’s Diagnosis Anniversary with Dawg Nation

Six years.  SIX.  It’s been six years since we were handed Cooper’s diagnosis.  This morning I watched Cooper’s uneven, labored gait as he walked away from me and I had a sudden twinge of sadness.  The scar from his spinal decompression surgery two summers ago glared at me from the back of his neck.  I watched my sweet eight year old start toward the steps.  Today it’s too much work to walk down them, so he sits down and bumps down each one on his butt.  He’s wearing Christmas PJs that fit a normal four year old.  He has become more mature with his questions and thoughts, and his face looks older.  But he’ll always be this size.  When I pick Cooper up from school and see his third grade classmates, the kids are giant!  It’s now VERY apparent Cooper is different.  I think the difference affects me more than him, and I hope it stays that way.  He’s doing age appropriate things (and that’s what’s important), I just don’t want him to ever outgrow snuggles with mama.


We’ve been hunkering down and masking up during the pandemic.  Theoretically, Cooper is at an elevated risk of serious complications, should he catch COVID.  We’ve mindfully chosen how and where we interact and are walking the line of enough interaction to keep everyone sane, while staying safe.  The one thing that hasn’t changed is infusions at Children’s Hospital Colorado (CHCO) – we still go once a week.  We check in at 9 AM and leave by 4 PM.  A couple weeks ago, we walked in and it was like the scene from the 80’s TV show, “Cheers” – NORM!  Everyone at the screening desk, the volunteers at check in and admissions staff all lit up and greeted us when Coop walked in.  Our weekly hospital visits haven’t changed, it’s been our one place of normalcy.  Isn’t that crazy?  Cooper’s rare disease treatment is the one shred of familiarity during the quarantine.  I’ll take it.  We cherish our CHCO family.  Last week we were lucky to be at infusion the day that CHCO staff arranged a ZOOM call with Colorado College (CC) hockey players and CHCO patients.  Coop and one other little boy got to play a word game with the CC players, then do some Q and A.  Cooper was beaming, laughing, being a ham!  He sat up straight and participated and was so stickin’ happy.  The players were animated, kind and fun.  I profusely thanked the CHCO staff and CC players for their time and involvement in such a fabulous activity.  One of the CC players asked a friend on the Colorado Avalanche to record a video for Coop.  The CHCO staff sent it to me, and I nearly died.  The Av said that he and the Av’s are all behind Coop, praying for him and rooting for him.  Queue the big mama tears.  Coop was starstruck. We were exposed to a bit of what the hockey family was like two years ago when we got to spend time with the University of Denver hockey players, but we’re experiencing this hockey family more and more now, and they are lifting us up.  


In October, Cooper tried sled hockey for the first time at an event put on by Aces Hockey Academy (where Campbell attends fifth grade) and Colorado Sled Hockey.  Although his arms weren’t strong enough to pull him, Cooper quickly made friends and the hockey family stepped up to push him around, make sure he had a great time, and help him succeed at playing sled hockey.

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And here our hockey family grows again.  Dawg Nation (a non-profit providing hockey families assistance and opportunities during times of crisis) has reached out and wants to provide special fun and support for Cooper and our family.  We are humbled and honored to the recipient of their time, talent and our community’s generosity.  Visit Cooper’s Dawg Nation page to help. Feel free to share the Dawg Nation link or this blog link if you are so moved.


Flashback to six years ago – a devastating diagnosis for our 16 month old son.  We’ve seen five surgeries and recoveries.  We know how to handle weekly infusions.  We move through the world and change it to accommodate Coop.  Today we deal with the physical and emotional challenges as they come.  I think this is the first year I can say that.  Before now, I’ve been so concerned about what IS to come.  Time for a new mindset.  Now we aim to celebrate every day, and live in the now.  We are grateful to Dawg Nation for our upcoming celebration! January 30 (diagnosis day) usually brings me such sadness, I am delighted to have fun news to share on this year’s diagnosis anniversary. Cheers to our hockey family!