9 hours...but we made it

 And we are back!  Monday was a LONG day … 9hrs long.  We arrived in London on Sunday, as we knew to expect a long appointment day on the Monday.  After checking in, we discovered that we had a room with a view of the pool and a balcony to sit on and enjoy the sounds of the waterfall!  Such a nice change from what we have had. The last few times we have had a view of the parking lot… not too exciting to look out of, so this was an unexpected and welcomed surprise!  After getting something to eat, we pulled out Uno Flip (a new card game) and had a great night laughing and enjoying some competitive banter!  

 

Due to the time change it actually felt like we slept in!  After eating some leftovers for breakfast, we headed to the hospital.  It was crazy busy!!  Line ups of people from the hospital out the door and all the way into the parking garage. Out front (where Matt dropped us off) the line was all the way out to the sidewalk and just starting to head down the street.  After getting through the screening process and signing into the PMDU Kaleb was weighed and his height was checked.  Then we were shown to his curtained room.  Kaleb was given the corner “suite” because his treatment was going to be a long one.  

 

Kaleb got settled into his bed, had his bandage changed (the one that helps hold the PICC Line in his arm), blood work drawn and was hooked up to a hydration drip.  Due to one of the new drugs Kaleb has a mandatory 2-hour hydration drip before they will run tests to see if his body is hydrated enough to receive the chemo.  Kaleb then pulled out his laptop and started to work on his schoolwork while he still had energy.  During this 2hour period we talked with his Case Nurse Manager, his Interlink Nurse and his Specialist.  We are still waiting to hear from the Radiologist-Oncologist/ Tumor Board for the final decision on radiation treatment. (Again, Kaleb’s specialist feels that he will not need it but it is not her area of expertise to make that final call) We brought up the concern of how Kaleb is losing feeling in his fingertips again with the Specialist and, at this point as long as he is not experiencing pain, they are going to continue with the chemo drug that is causing the numbness and hope that it will not be permanent after he is done all of his chemo treatments.  Kaleb has been invited to join 2 studies on the effects of different drugs used during Chemotherapy for kids.  We were given a bunch of paperwork and told to take it home and decide what he feels comfortable with.  

 

Kaleb’s blood work came back, and his counts are on a rise! This is a good thing 

The hydration test came back, and it was determined that Kaleb needed an additional 2 hours of hydration before he could start the chemo treatments.  The nurses checked him over to make sure he was not retaining water in his arms, hands, or legs as that is a lot of fluid.  For lunch Matt dropped off Qdoba rice bowls at the front doors of the hospital and signed paperwork that needed his signature so that we could submit some forms again.  (Sadly, our paperwork was misplaced in the shuffle which meant us redoing the forms we filled out the day Kaleb was diagnosed with Cancer)

Kaleb’s Dietitian came in to talk with him and to see how the week was going.  Kaleb gained 2lbs this past week!!  As long as he continues on this path forward and does not lose weight, she is happy to work with him without needing to intervene medically.  

Once the chemo was being administered Kaleb began to get chemo brain fog, so he put away the schoolwork and decided to rest.  Ollie the “clown” came by in the later afternoon and taught Kaleb a couple of magic card tricks and Kaleb was able to try them out on the nurses.  As it turned out one of the nurses went to magic camp as a kid and remembered learning the trick Kaleb was trying so she suggested another nurse to try it out on.  Kaleb had the poor student nurse so confused and she could not figure out how it worked! Ollie made sure Kaleb had a few different snacks to munch on before going to visit someone else.  

The Camp rep. came by to see Kaleb and to see if he wanted to try a new card game she just got, and it turned out to be the same game we had played the night before...UNO Flip!  If you have not played this game, you should try it!  It turned out that we had messed up some of the rules the night before, so we sorted out the correct way to play and how to keep score.  After 3 rounds she headed out and Kaleb decided to take a nap.  While Kaleb slept, he was put back onto hydration for another 2 hours (this is part of the protocol with his one chemo drug) I read my book and killed time on my cellphone.  In the last 5minutes of hydration Kaleb’s face went flush (this happened the last time and at that time we were told it is a reaction to the chemo he received).  His vitals were checked, and he was good.  They believe this might be a reaction that is due to him being a redhead with fair skin.  We were given instruction to keep an eye on him and that if the flushing had not gone away in 3 hours to come back to the emerge.  After getting the rest of the hydration and getting disconnected from the IV drips, they changed Kaleb’s leads on his PICC line and he was free to head out after 9 long hours.  Matt was there waiting out front for us and took us back to the hotel.  After eating dinner Kaleb and Matt took some time to enjoy the balcony and listen to the waterfall together.  We packed up or bags and headed out in the morning for home. We are now here at home till the end of the month so long as Kaleb is healthy.  This week Libby and I will be getting our second doses of the Covid Vaccine.  Kaleb is still not able to get the second dose until just before cycle 4 and so long as his blood counts allow him to get it.