the end is near... cycle 6

 Well the title says it all... we are now in our final scheduled cycle.  

To avoid any confusion a cycle is made up of 28 days.  Within those 28 days there are 4 days of chemo treatments. 

Last cycle was hard and we all hit a wall.  Exhausted and worn down from everything life has thrown our way.  I am sorry I failed to update you all but we needed to take time to process and feel some of our feels.   Everything was good, no bad news we just needed a moment to pause and breathe.  My sister referenced it to running a race, there is a point where you hit a wall and all the feels come out... next thing you know you cross the finish line and all is good.  She is right ( I think... I'm not a runner by any stretch of the matter!!) the only difference is Kaleb's race will continue even after the bell is rung.

Matt and I made the hard decision to keep the kids home from school.  Kaleb went onto a medical temporary leave from school.  The physical fatigue and, mental struggle combined with treatment days falling on exam days was too much. 

Keeping our kids home was not an easy decision.  Any decision at this point feels like an uphill battle.  We struggle to balance how to approach decisions.  It feels like what ever path we choose, someone is going to be affected by it.  For example: do we send the kids to school and risk Kaleb's health? or do we keep them home and risk their mental health. Sending one but not the other has no added benefits, illness can still be brought into our home.  Mandates constantly changing causes us to spin like tops, second guessing every decision we have made thus far.  Every person is tired of the pandemic, nothing is clear and simple anymore.  Now navigate that with a sick child, every decision you make as the parent you have to live with if it goes pear shaped.  Because of this we have missed Birthdays, Thanksgiving, Christmas, Family vacations and gatherings.  

Adulting sucks!!

We headed to London on Sunday with Libby in tow.  This week she will be learning remotely from a hotel room.  

Kaleb and I reported to the PMDU for 8:15am.  Monday was going to be a long day, this is the day that he gets 3 different chemo drugs and a few hours of mandatory hydration.  After getting weighed and measured Kaleb and I were taken into the treatment area (the big area with curtained rooms)

After going over the normal questions, Kaleb showed the nurse his PICC site.  You see on Thursday night of last week we had to call London because Kaleb had developed a rash around all of the bandages.  The initial thought was that it was a reaction to the swabs used during the bandage change but the past 2 weeks we had been using the same supplies that the hospital uses and followed every suggestion they had proving this is not the case, so now they are hoping that the prednisone will clear most of it up. fingers crossed.  We were also told that the plan is Kaleb will have his PICC Line removed on his last day of chemo.  His skin is having trouble with the cleaning swabs used and bandages being changed so often causing his skin to react and at times blister (thankfully no blisters this time thus far).  

We discussed school and how Kaleb has taken a temporary excusal and what the new protocols are at the school and what that could mean for Kaleb and for Libby as well.  I wish it was straight forward but again it is not and so we have some more to sort out.  

We talked about how Kaleb has been having nose bleeds lately.  thankfully his bloodwork came back with good counts so we have been told not to worry about them at this point.  keep an eye on them....

Today we heard the gong rung by a little one who had no clue how to even ring it.  It's crazy how close Kaleb is to that goal...

Tuesday brought more surprises.  We slept in (well it was kinda a doze in and out type sleep in but none the less it was sleep) and ordered some breakfast from the hotel restaurant.  Libby logged into school and was able to touch base with her teacher for a few minutes in a video call.  I am so proud of how she has been working to keep up in her classes.  Libby's teacher has been wonderful supporting her and working with us in these strange times.  She misses school and her friends. Again I worry we are failing her to keep her brother safe.

Kaleb and I headed back to the hospital Tuesday for 1pm.  Just after arriving at the hospital for another dose of chemo Kaleb's colour turned yellowish grey.  Not a good sign.  We were brought into the treatment area of the PMDU so that Kaleb could lie down as he was exhausted.  The nurse went to talk to the case manager and consult one of the specialists that was in clinic before any chemo or meds were ordered.  After 30 minutes of waiting our nurse came back and let us know that after looking through his blood work from the day before the Dr determined his liver levels are good, Chemo treatment could continue.  (They felt that this was due to the chemo from the day before, the nausea he was fighting and the lack of sleep Kaleb had due to going back onto the prednisone. ) Anti-nausea meds and the chemo drug were ordered.  We gave Kaleb some flattened ginger ale to help settle his stomach while we waited for the meds to kick in, and he sucked on some peppermint candy cane. (the bag of mints were pulled out of my purse in the morning at the hotel  and I did not notice before we headed to the hospital) Again a mom fail. Thankfully we have awesome nurses who can be resourceful and come to the rescue!

After waiting an hour for the anti-nausea meds to kick in Kaleb was hooked up to his chemo and he slept. I sat there reading a book in the darkened room and sneaking quick glances at him asleep...relieved that his colour was slowly going back to normal.  The worse feeling in the world is seeing your child in a hospital bed knowing there is nothing you can do to make it better.  After his chemo was done they took another set of vitals and gave us a time to come back the next day.  

Matt met us at the front doors of the hospital grabbed some of our bags and walked us back to the truck.  On the way home we grabbed a drink for Libby and I.  All of a sudden we heard a soft voice say "could we possibly get me a little snack of chicken nuggets?" the whole day we had been trying to get him to eat so we turned around and grabbed some nuggets before heading back to the hotel.  After he ate Kaleb started to perk up a little so we pulled out the switch and played a little Mario kart with his sister and her friend back home.  

It's currently 2:50 am on Wednesday as I am typing this.  Why am I up right now?? well Kaleb needs to take more anti-nausea meds in a few more minutes.  We were late in getting them to him last time and we do not want a repeat of the last 24 hours where he struggled with nausea.  I suck at waking out of a dead of sleep and getting up just to go back to sleep.  (so does Kaleb for that matter). I am a night owl but by 3:30am I will need to sleep, Matt will do the early morning meds with Kaleb.  So here I sit on the balcony with a beautiful view of the dimly lit pool hearing the waterfall overtop of the music I am listening to through my ear buds typing up this update.  I will finish the blog post after we get back from the hospital and will hopefully get it posted before we head home.  

Today (Wednesday) the boys went to the hospital and the girls stayed back at the hotel.  Libby and I spent the afternoon playing boggle, looking up kalimba music to learn for her music class and researching what she would like for a grad dress and how she would like her hair to look.  

In the PMDU Matt and Kaleb noticed that it was busier than normal.  Lots of the nurses commented on how much better Kaleb was looking compared to yesterday.  The boys enjoyed watching the new episode of Boba Fett together while Kaleb received another dose of chemo.  They learned more about the PICC Line removal and the healing/ after care process.  It's hard to believe that his PICC is being removed in a few short days!!  They were also told that next week we will go over all of the details of what to expect and the steps moving forward Post Chemotherapy.  After Kaleb was done at the hospital the boys stopped to grab a snack for everyone and came back to the hospital.  I could tell that Kaleb was pumped and feeling much better compared to yesterday as he was happy to chat and fill us in on his day and also joined in playing the switch.  After dinner Matt and Libby enjoyed gaming together and Kaleb and Amelia spent some time playing an online game with each other.  As for me I am finishing up this blog post and then I am going to take some time for myself and try to come up with a plan for Kaleb's birthday this weekend!

As always thank you for coming along our journey and for supporting us as a family.  

Katt