The Gong has rung!

 It's been almost a week since Kaleb's last dose of chemo.... since he rang the "bell".  It's funny, I have been dreading writing this blog because when you hear the "bell" ring it is surreal, a mixed bag of emotions ... we are still processing.  We are so thankful that Kaleb was so fortunate to have the opportunity to a ring the bell that many do not.  Kaleb is still under "active treatment" for several more days. Bloodwork in London in two weeks and from there we will wait.

When talking to someone on Kaleb's team, She said the mixed emotions are normal.  You see when this all started back in August, it was like we found out our son was drowning in illness.  Our medical and support teams threw Kaleb a life vest making sure he could stay afloat and get treatment.  Now that the active treatment is completed that life vest is being ripped away and we have to wait and see if Kaleb can swim again.  Waiting is hard and its scary.  3 months is a long time to sit and wonder...  Did it kill all of the cancer ? Is it all gone? Will it come back? What is our new normal? 

Sunday we headed off to London nervous and excited.  After checking into our hotel we ordered dinner and then got ready for bed.  It was so hard sleeping that night both Kaleb and I got about 3 hours of sleep (I got an extra 30min).  I was a bundle of nerves and excitement, it was like I was a child waiting for Santa to come Christmas morning but there was also a pit in my stomach.  We were up and leaving the hotel by 7:20am for Kaleb's appointment Monday morning.  After finding a parking spot we headed into screening.  They asked if Matt was on the list and if he had been put on the approved list of extra people.  We quickly told them that he should be as our son was ringing the bell and our Nurse Case Manager had told us it would be ok.  They pulled up the list and thankfully Matt's name was on there!  We finished the screening process and headed to the PMDU to check in.  After 15 minutes of waiting the receptionist arrived and started to get her stuff ready to check in Kaleb.  One of Kaleb's nurses came out to see what was going on because he was "late" and we are normally early.  While Matt and I waited to check him in, Kaleb and the nurse went to get him weighed and measured.  We were shown into the pod area and given Kaleb's curtained room for the day.  Because it was too early for Kaleb to take some of his meds before the appointment time the nurses hooked him up right away to a hydration drip and administered his anti-nausea medicine so that we could stay on a schedule that works best for him.  Matt popped up to the Tim Hortons in the hospital to grab food and drinks so that Kaleb could take his other medication that needed to be taken with food.  

When checking my emails on my phone I noticed that there were emails from one of Kaleb's teachers and also from his Nurse Case Manager (NCM).  Kaleb's teacher wanted to give his well wishes for health throughout this new year and to say how proud he was of Kaleb and how he has handled everything.  Sadly Kaleb's NCM had to work from home so was not able to be at the hospital, she sent her well wishes and said that she would see us the next appointment.  This was hard to find out and stress climbed a little higher.  You see our NCM has been with us since the beginning she has walked with us step by step, keeping us above the water when we felt like we were drowning or turned upside down.  We had questions?  she was the one who would walk us through it or would get the specialist to cover it again and then would she would come back near the end of the day and check in to make sure we were all good.  Like I said this big day had a gamut of emotions that swirled around us and limited sleep was not helpful.  

Another NCM brought us into the exact clinic room where we first heard Kaleb's diagnosis of cancer, to talk to his specialist.  To our surprise a nurse practitioner came into talk to us instead.  It turned out that Kaleb's specialist had not made it into the hospital yet but that she was going to be there later.  We were assured that she would come and talked to us at the bedside but that we needed to get through the clinic process so that Kaleb could be cleared for his last dose of chemotherapy in good time. (this was a long regular scheduled treatment day, without adding in all the extras we had in the plan)  We went over the plan for the day, it was confirmed that the PICC Line was for sure going to come out that day, Kaleb was going to ring the gong, and we went over questions we had.  

Kaleb's bloodwork came back good and after our clinic visit with the Nurse Practitioner it became a waiting game for Kaleb to pass his hydration test before the chemo could be started.  He has only ever passed this test on the first try twice... today was not one of those days!  So more hydration was added onto the plan.  While we waited the nurse who Kaleb had asked to be there to remove the PICC arrived to reassure him that #1 she was there and #2 everything was going to be good not to worry!  Kaleb passed the hydration test and was hooked up to his last and final chemo treatment!  Just before lunch Matt and Kaleb decided that we should order pizza.  

During the day we had lots of "visitors" (staff) but we missed seeing the few that were not able to be there.  It was also the day we learnt about Bravery Beads... yes most kids learn about it within the first few days of treatment but we had not.  Our ChildLife person told us that Kaleb would still be able to get them and gave us the information sheet that we needed so that we could fill out what he had done thus far.  As I sat there compiling information needed from my calendar, this blog and his medical binder I could not believe all numbers.  We went on the conservative side of numbers but even still it blew me away.  Here is a few examples: In the last 6 months Kaleb has had 48 doses of Chemo, he has had 16 pokes (this number is low because he had a PICC Line but will climb now that it is out) and has had 34 clinic visits in London.  There are countless more numbers but you get the picture!  Kaleb will be able to get all of his bravery beads he has earned when he goes back for bloodwork on the 14th.  

Kaleb's specialist came by his bedside and went over all of our questions and to let him know she would be there when he rings the gong.  

Kaleb is currently still considered in active treatment until the 8th of this month.  Then they will have to check his bloodwork on the 14th to see how his numbers are.  What does that mean? well it means that even though he rung the gong his body is still fighting.  It takes time.  Once the bloodwork is done we sit and wait.  No scans or tests will be done until 3 months have passed.  That is when they will start to check and see if the cancer is gone.  We have been told that we can slowly move back to a normal life but again it is going to take time. 

Kaleb and Libby are going back to school!  I am so happy that the kids are going to be able to see friends. We will still have to be very careful! Masks, sanitization, and socially distanced is going to be our lives for a while yet.  Kaleb's immune system will take a long time to recover from his treatments.  He is still at risk of getting seriously sick from a little cold.

Fevers are still a major concern and will need to be assessed by doctors.  Due to the chemotherapy we have learnt that Kaleb may need to get some of his vaccinations re done in 6 months.  He will have tests done at that point to see if his body is able to remember how to produce the antibodies he received from his childhood vaccinations.  Which ever antibodies he is lacking will mean that Kaleb will need to get vaccinated against it again.  

With all of that said we have been told that we can have a little bubble of people  (5 to start) so long as they have all of their vaccinations (this includes the covid ones)!!  Once we know that all of his vaccinations are good then we should be able to open up fully to what the public health guidelines are.  I know this will be hard and Matt and I have agonized over what this means for our family. We believe in choice and respect that everyone should have that right...but we have to do what is best for Kaleb so we will follow what our team has instructed us to do.  

We have been told that Kaleb's heart will be something they will need to watch for the rest of his life.  The chemo drugs they had to use to fight the cancer damages the heart.  He will always have to be concerned with how much stress he puts his heart through.  Power lifting/ body building will never be in allowed.  When he is old enough to drink it will have to be limited and no energy/monster drinks.  He will have to watch what he eats and make sure that he is doing everything he can to keep his heart healthy. Ironically now that he is done with chemo it is recommended that we go to a heavier plant base diet with a little red meat.  Kaleb will have regular checks/tests on his heart for the rest of his life.  

The side effects of the chemo such as brain fog, numb fingertips and muscle fatigue should start to right it's self in the next few months.  We were told Kaleb will need to be patient and kind to himself.  He has been through so much and his body is still fighting... there is no automatic switch, so it will take time.  

Once his treatment of chemo was done, Kaleb had a mandatory 3hour hydration period (standard protocol) and a PICC Line to remove. Due to the time of day, it was decided that it would be best to have Kaleb ring the gong while he was still hydrating as there was a lot of staff saying that they wanted to be there to see him ring the gong and many of them had to leave at 4pm when their shift ended and if we waited for Kaleb to finish hydrating they would miss it.  So on Monday January 31st 2022 at 3 pm, the staff lined the hallway for us to walk through they sang a song and Kaleb was told to hit the gong !! It was noted by several of the staff that the turn out was one of the biggest turnout of staff they have had for a patient!

After Kaleb rang the gong we went back into the pod and he tried to calm his nerves as he knew that the PICC Line was going to be next. Originally Kaleb was going to be under sedation when the line was going to be removed but due to the Covid lockdown it was decided that they would do it at the bedside. (hence Kaleb requesting a particular nurse to be there to do it) To distract Kaleb while we waited for the hydration to finish, Matt and I pulled out my laptop and pulled up the montage that family and friends participated in.  He was so shocked, surprised, and touched by the love shown to him!  Even some of the staff came and watched parts of the montage! 

It came time for Kaleb's PICC Line to be removed.  Plugged into his earphones with his music playing loudly working on zoning out, Kaleb's nurses got to work.  Surprisingly it was fast. Kaleb said it was not painful but felt weird. We did get a video of it being done but that will be for Kaleb to share when he is ready to.  After 5 minutes of strong firm pressure they bandaged Kaleb's arm and we were given instructions on how to care for it and what to watch for.  Then we needed to wait 1hour before we could head out.  Kaleb decided that while we waited it would be a good time to call his Aunt to wish her a very happy birthday!!

When we were back at the hotel, we ordered Spaghetti Eddy's for dinner and Kaleb called his grandparents to let them know he was done and everything was good. Instead of crashing (like we normally did) after a long day, Kaleb had the urge to play some Mario Kart!!  That night we all slept.  In the morning we ordered room service for breakfast and then headed home.

This week has been spent talking to the school and hospital making a plan for the kids to go back into the school building, and what to expect with Kaleb's recovery academically as well as processing everything that has happened for the last several months.