Month: January 2020

The past 2 and a half months have been a roller coaster. Literally we have amazing days when both kids are happy, healthy, playing and we forget for a few hours that we’re battling cancer. Then the very next day she could be nauseous and just to get her to take a single crushed pill takes us an hour, longer if she throws it up and we have to do it again. Yesterday was a long hard day. I try not to focus too much on the hard times but I thought I’d change it up and give a blow by blow of what a hard day can look like.

Sunday morning Madelyn came in to our room and said “Mom, I think I need to throw up” in my just woke up fog I half leaped half fell out of bed and followed her to the bathroom. She vomited a little and dry heaved even more. However then we took a Zofran and she seemed good.

We went down stairs to snuggle and watch TV. A few minutes later Parker came running down giggling and ready to snuggle mom. 

Brad brought mom a coffee and joined us on the couch. We just booked our new dates for our Florida trip (to fit into her chemo schedule) the night before so we told the kiddos and spent an hour all googling and watching you tube videos of water parks in Orlando and Tampa. The kids were so excited! The sun was out which really makes us northern Michigan folks excited in the winter so we were ready to face the day! Madelyn has been nauseous since her chemo on Friday so we were wrapping our heads around the battle we would have with morning meds. Mom gave Madelyn a kiss on the forehead. A new norm for mom and dad to check for temps, and she felt warm. Took her temp.. 102.6.. we always take it twice. Once on each side of the tongue. Both in the 102 range. Panic set in… Brad could read it in my face so then we were both in panic mode. Our nice morning, of how could we go enjoy this sunshine before our ski lessons just turned to this is going to be a long crappy day that we hope doesn’t escalate to anything serious. Protocol is to call DeVos with a temp of 101 or higher. So as I have the phone to my ear I’m looking for the lidocaine and press n seal wrap that I know they are going to make me use on her. Madelyn starts crying when she realizes the lidocaine is out. She knows that means she is going to get poked and she wants to know where and how many times. I stop and sit with her trying to get her to quiet while I’m talking to an operator then the on-call oncologist. Sure enough, they want lidocaine on both arms and her port. They call the ER at Munson to let them know we are coming so we don’t have to wait with all the sick people in the waiting room. In the mean time Brad has already predicted we’re headed to the ER and is packing our go bag with all her meds, paper work, iPads, card games and snacks. Parker is confused and not a fan of us running around telling him to get ready to get out the door and Madelyn is still crying. We somehow manage to get everyone in the car. The closer we get the more she cries. She hates being poked and she knows she’s going to get at least two. When we get there we mask everyone up. Last thing we need to to catch RSV or the flu! I demand no one touches any surfaces until we get registered and in the room. That is where we spend the next 6 hours. Which included accessing her port, blood draw from her arm, chest x ray, nose swab for the flu, 2 rounds of IV antibiotics, vomiting up our AM oral meds that we finally got around to taking, mom begging to have those meds delivered via IV, and IV Tylenol since we didn’t want to force her to attempt oral meds again and vomit. We had had enough. Parker was bored by this point however he did amazing considering how long we were there. All the test came back good. We are still waiting on two blood cultures if those are negative I believe we are chalking it up as a reaction to her Chemo or fighting a virus. We were finally going to head home. But not before we have to remove the large tape on Madelyn’s chest and pull the butterfly iv from her port. This part really sucks and always makes her cry.

The next morning a DeVos nurse checked in with us. She said if her temp is 101 or higher after 12:00 to call them back. It stayed in the 99 and 100 range until 1:30. I took her temp with our thermometer DeVos gave us and got one reading over 101. So I grabbed our other thermometer and took it again. Under the left side of the tongue read 99.9 and 100.5 and under the right side of her tongue I got 101.5 and 101.7. I seriously hate thermometers! What do all those number even mean?!? So I called DeVos and told her my story with the two thermometers and 4 readings. She told me we were going back to the ER. Ugh!! Madelyn is beside herself now. She keeps saying “I don’t want to go!!” And screamed bloody murder when I put on all her lidocaine patches. We thought it was best to leave dad and Parker at home for our 4.5 hour trip to the ER. She got another round of blood cultures from an arm draw and from her port so two more pokes. Then she got 2 more rounds of IV antibiotics. We won’t hear on her cultures until tomorrow and or the next day. However Surely tomorrow all those antibiotics will fight off whatever is going on. Poor girl. On a happy note besides some nausea, needles, bad-aides and tape she is happy and acting normal. She was all excited for her new game that arrive today (Christmas money purchase) so she took her evening meds quickly and played for a bit before I declared night time. Mom is looking forward to some peace, quiet and wine.

Our “2 years of chemo” officially started on Friday. We are hopefully we have more ups than downs but I’m sure it will still be a roller coaster.

I’ve now had several weeks off of work and its been on my list to do a blog all break.  What can I say, I’m a very good procrastinator…  I actually started a blog on my first flight after we found all of this out, but only made it a few paragraphs in.  That blog was/is my view starting from the beginning of Madelyn’s fight.  I’ll get back to that one eventually, but for now I wanted to give an update about the Holidays and how Madelyn is doing.

The last week of school before Christmas break officially started, didn’t go exactly as planned for us.  Nothing urgent, but she only ended up making a few ½ days.  Going into the week she was on track to do her first full week of school but the main med after her steroid reared its ugly head.  This med we only saw one real side effect and it was nausea.  It only last for about 10 days but most mornings in this stretch she’d wake up and feel not bad, but then the nauseous feeling would kick in and she’d have a 45-60 min rough go.  As the days of this week went on we got better helping her through it but this kept her out of school most mornings.  She also in this stretch got her first fever towards the latter part of the week.  101 is our cutoff before we have to call Devos.  She maybe got up to a little over 100 deg, but with most the school fighting through the first round of sickness we figured it was best to keep her home.  The fever probably scared mom and dad more as she never looked or felt sick.

By Christmas time the nausea had gotten better for Madelyn.  She was starting to move and play like normal, and her bubbly personality was back.  A lot of people got to see her for the first time over the last few weeks and I think a lot were quite surprised how ‘normal’ she is right now.  For most of the day I can’t lie, she has been her old self in every way.  Riding her bike fast again, running up the stairs, climbing in bed in the morning and jumping on dad, doing yoga with mom…  Right now though the only part of the day which isn’t ‘normal’ is when she has to take her med’s.  We’re now about 65 days into this whole journey and I’d say around day 50, taking med’s became a battle.  Most med sessions we could crush up the pills, get her to take her bite of chocolate pudding, have cheese puffs and milk in waiting and life would move along.  We now can’t seem to find a combination of anything that she likes.  She knows its coming each night and the moment when the words ‘hey Madelyn, its time to take your meds…’ happens, she gives you that look and breaks into tears.  It’s definitely a hard part of the day, but once she does get through it she goes back to ‘normal’ we usually end of night happy and with a game or two of cards. 

Back to Christmas… Her Santa wish list this year was a foot spa and a bath bomb maker.  Luckily Santa was able to find both and she truly had a great Christmas morning.  Dad even tried the foot spa with her and with a few salts in the water it was quite delightful 😊.  We have stayed very busy over the break and I think for Madelyn (and I know mom and dad), it was just a great time to be active and really have a normal holiday.  I use the word ‘normal’ a lot right now as that and to stay ‘on-track’ is our goal with each and every step. 

December 23rd we did a trip to Devos for her weekly treatments.  This one was unique for Dad as I was the one who had to take her to get accessed and treated.  Mom was fighting through a cough and cold.  Madelyn wasn’t happy with the situation, but her and I made it through.  Getting the port accessed doesn’t hurt at all thanks to lidocaine, but man it sure is scary.  The nurse beforehand gave me 3 jobs.  Be very still and do not move, do not touch the area and don’t cough on the clean part.  I did all 3 but I have to admit, its just plan scary for her and parent.  After we got accessed we waited for the blood results (all good) and then it was off for her spinal tap.  The spinal tap is interesting to me.  When that is all they are doing, she is only out for about 5 mins.  Seems easy enough, right.  But, each time I’m asked to sign a consent form, watch 5-6, doctors, nurses, specialist come into the room ‘just’ for a 5 min procedure.  They always let us give her a quick kiss goodbye, without fail I can’t do it without getting quite choked up. 

All in all she and our family had good break.  Everyone got a cough and sniffle at some point which I assume a lot of families out there had.  Madelyn even got a double ear infection towards the end of break.  Only the first night she woke up with any pain so that was the good news…  Adding that doctor visit though into the same day where she was supposed to get blood drawn up here in TC for the first time was a long and rough day.  We made it through but easily our hardest day since coming home and this all started.  That 24 hrs. deserves a post on its own as it was just one of those days!  Towards the end mom and dad were even hoping for a quick happy hour to  end the day.  After the double shot into her thighs though it was time to come home and snuggle up and watch a movie.    

As much as we love her and Parker, this morning we were sure ready to get them back to school 😊