May 7, 2024

There is something about having surgery, feeling crummy but then realizing that is how your own child feels often.  From the infusions, LPs, daily oral chemo and everything between.  So my surgery was a hysterectomy- I mean I have been transparent thus far why stop now.   All in all it was just as expected.  I had it on Thursday, April 25 (my mom's birthday) after living with pain and issues since I was 17.  I thought it was bittersweet having it on her birthday.  I honestly flipped out emotionally the day before.  Cooper wasn't feeling well from his LP the week prior, still having  to take morphine for painful spinal headaches.  And on that particular day before surgery, Cooper struggled walking into school with a smile.  He cratered and I had to walk him to his classroom.  Then I did it.  I fell apart.  While at school.  It was too much- to watch Cooper struggle and in pain, knowing that I was going under the next day, and having to celebrate my mom here while she is not.  So I allowed myself 10-15 minutes of absolute ugly crying as I walked back to my classroom.  I had to take a moment in a friend's office on my way.  I have had a billion surgeries before- never had fear, worry or panic.  But as I tried to regulate myself to be able to finish teaching that day thoughts of all the what ifs and how will this work? Not being able to do all the things I typically do without thinking about.  What about the boys- how will they handle me not being able to lift, etc for 6-8 weeks? 

There's something about your own child having to face their mortality, that I guess makes you take a look at your own... Thank goodness for our village.  Man. We are blessed.  My dad had flown in to help with the kids and things.  So that helped.  

I went back to work on April 30- slow and steady and each day continue to feel better.  Here's the deal.  I truly believe that timing is everything.  I had a sense of humility last week when I realized on my first day back when I was exhausted, shaky and walked slower than normal.  I struggled but had clarity when I looked at Cooper.  We had a big talk about it.  The jist of the conversation was simply a moment of understanding and empathy because  how I felt for those first couple of days is pretty much how he feels. nearly. all. the. time.  He told me that he smiles and acts like he doesn't feel bad, because he doesn't want to let people down, and he wants to be normal.  He said it easier to tell people he is "fine", then explain the complexities (my word not his) of his daily regimen. 

Fast forward to last weekend.  Cooper was complaining that he had some pain in the high thigh/groin area.  He gets this rashy thing (has had it off and on since August of 2022).  It comes and goes but this time he said it was different.  He acted like he was "fine" but my gut told me otherwise.  Saturday morning he wasn't up for going to School of Rock, another hidden sign that he wasn't fine.  We point ointment, gave oatmeal baths and all the things.  We went to school yesterday and Dillon picked him up at dismissal, Dalton started HS football workouts yesterday.  So when we got home around 5:45 I knew something was wrong, shoot even Dalton did.  So even though I felt dramatic, etc I called oncology and brought him in.  Good thing I did.  That pesky little rash thing he gets, well this time it came in infected.  So all the antibiotics to try and clear it up.  Plus topical antibiotic as well.  His face has been rashy for the past few months honestly, oncology thought it was due to the 6MP (chemo- rash), or a reaction to his Tuesday chemo  (methotrexate).  But I have thought it might be his  prophylactic antibiotics he takes on the weekend.  So now in addition to an entire bottle of antibiotics a day (75mL) for FIVE days, we have to Benadryl him twice a day.  As today he looked especially hivey.  So we got there at 9:30 and by the time he and I got all his medicines, etc it was 1:45/2:00. He went to clean the waiting area with the toys before we left, just so the nurses didn't have to do it.  He has a big heart.  

His iGG is low , so he will need to get an IVIg infusion next week.  We now have some new things to put in the mix- just to keep things interesting.... His spirits are better this evening, but now his fear is missing the school's musical he is in on Thursday evening. 

Please prayers for his body to tolerate the extreme antibiotics that will hopefully kick the infection to the curb and for him to feel well enough to "perform" Thursday night.   Also since he took his first dose around 1:45, all of his meds schedule is all pushed back about 2 hours this evening.  Since it is heavy chemo night prayers that he is still able to rest even when we have to wake him up to give him said chemo..... 

In the grand scheme of things we are blessed.  Grateful they didn't have to admit him.  Blessed for our village that help get Dalton to and from places, when things like this pop up.  

I will never forget when a child life specialist in the cancer center told us the first time we went in  that the treatment is a marathon.  I am still learning what exactly that means (I mean I know what it means, but how it fits in our lives 🤣). The past two weeks remind me that it is okay to slow down to a pace that a snail can beat- just don't quit.  So here we are crawling through May at our own pace and trusting in Him never quitting and never allowing the cancer to be stronger than we are.

🧡

#CooperDrakeStrong