3 months down and a lifetime to go

Quick recap for those who need it....

 When Kaleb was diagnosed and had completed his initial PET-scan tests it was determined that he had had Hodgkin Lymphoma stage 4b Cancer in his neck, chest, lungs, abdomen and pelvis.  

After 7 months of active treatment (6 rounds of chemotherapy) Kaleb rung the gong.  We were told that Kaleb could slowly get back to living a normal life with some restrictions and that we would have to go back to London in 3 months to have more scans to determine if the cancer was dying or if it would start to re-grow.  This would be a CT scan for the 3 month mark.

Types of scans: 

PET Scan- is the most detailed imaging scan they do

CT Scan- is more detailed imaging than an x-ray but not as detailed as a PET scan

X-Ray- is considered a entry level imaging. 

During these past 3 months: 

               Kaleb was able to see his friends only once and sadly contracted Covid-19.  (he has recovered)

               I ended up with Covid after Kaleb and still have the cough that came with it

               Kaleb made a soft return to work (maximum 4 hours per week and very light duties)

               Kaleb started tutoring Math once a week

               Kaleb was able to make a wish through the Wish Foundation (Check out Rock-the-Wish)

               We were able to go feed the birds as a family and go bowling with family

               Easter weekend we were able to see extended family for the first time in far too long

               I finally got to see where Amelia was living and going to school for the first time Easter weekend                      

               Libby had an allergic reaction to something unknown ( we are waiting to see an allergist)

               Kaleb had an allergic reaction to Tim's Ice Caps while at school and that sent us into panic mode.

               Kaleb was able to have a friend sleepover for the first time in 2 years

               Amelia moved home for the summer from college

               Matt had a shift change at work and has ended up with shingles in his mouth and Bell's Palsy 

Needless to say we have had to deal with panic, anxiety and stress.  Kaleb is still dealing with extreme fatigue, at times sleeping can be hard and dealing with the trauma of everything he has been through since August.  In reality we all are trying to sort it out to some degree but Kaleb more so than the rest of us.  You see this will be Kaleb's "regular" life he will never get a break from cancer screenings, or tests.  

                                  

The week leading up to Kaleb's visit to London you could begin to feel the stress and tension starting to build.  There was stress involved in making sure Matt was able to get the time off work to take Kaleb to London.  Like someone who might wear a lucky sports jersey to a game, Matt is Kaleb's "lucky jersey" when it comes to having tests done.  I am the one he wants when he has treatments or results from tests.  As the appointment day got closer the stress and anxiety grew, our heads could not be in the sand, we were going to be finding out if the chemo had worked or if we were going to have to do it all over again.  Matt ended up at emerge for sore ears and throat, they suspected strep and possible ear and sinus infection.  They also did a covid test, as Matt had mentioned that we had an appointment at London Hospital.  Mom guilt reared it's head and again I felt like I was letting down my kids as I could not be in two spots at once. Kaleb had his appointment in London and I had a meeting scheduled at the school on the same day and around the same time for Libby.  Regardless, mom guilt does not have to make sense or be logical... right?

On May 9th, (30 minutes before we had to leave for London) Matt finally got notification that he was clear of Covid and able to take Kaleb to his appointment.  Armed with Kaleb's medical binder (plastered with coloured coded sticky notes with reminders of questions to ask or concerning things that had happened throughout the past 3 months) Matt and Kaleb headed out for Kaleb's 3 month post active treatment appointment. Traffic was bad and by the time they reached the PMDU Kaleb was already 20min late.  Luckily with the way things were scheduled there was wiggle room.  Once Kaleb was signed into the PMDU they measured his hight and his weight.  Kaleb is now back to his original weight!! Kaleb was brought into a clinic room where they gave him an IV and drew his bloodwork.  They were then shown to the waiting area in the hallway to await Kaleb's CT appointment.  While waiting Kaleb was able to see one of his favourite nurses and say a quick hello to a few others that are normally found in the POD area.  Kaleb's Nurse Case Manager also came out to talk with him and see how it was going.  Everyone liked his hair and were impressed to see that it has come back in so thick and curly! 

Just before Kaleb's CT appointment Matt and Kaleb had a chance to talk to his Specialist's Nurse Practitioner who was subbing in for the day.  Kaleb's bloodwork looks great. All of his numbers are climbing back up to the middle of the normal range!!  Kaleb was reminded that he is going to need to give himself TIME.  Time to allow himself to process not only what he has faced with his health this past year but also dealing with the pandemic for the past 2 years.  Time for his muscles to feel strong again.  He is to focus on diet (avoid caffeine, its not good for the bones), exercise and sleep.  Basically he has been told that gradually his capabilities will increase, he just needs to give it time.

Kaleb's risk of getting an infection is reducing and with the way things are looking within the next 2 months, his immune system should be similar to ours.  In the mean time, masks are not needed outside but inside is still recommended. "Make wise choices and wait til after the 6 month check in"

After talking to the NP, Kaleb and Matt headed over to the CT Scan waiting area.  Matt filled out a bunch of paperwork and Kaleb had to drink the dreaded contrast drink to help the images come out clear on the scans.  Sadly this drink made Kaleb feel nauseous and he was already exhausted from lack of sleep and stress.  Two hours behind schedule Kaleb finally headed into the room to be scanned.  As soon as the scans were done Kaleb and Matt were told to expect a call from his Dr. with results within the next two weeks. 

After the appointment was done the boys went to the mall to get food and Kaleb some much needed new shoes. Less than a hour later I got a phone call saying they were exhausted and heading home. When they arrived home Matt was complaining that his sinus area felt full and almost numb so he went to bed.  Kaleb went downstairs to relax before heading to bed.  

Tuesday morning Kaleb headed off to school mentioning again that it would be nice if the world could just stop for 2 weeks and give us time to breathe without having to play catch up all the time.  Sadly that is not how time works but I agree.  

Matt woke up and his face was numb on one side so he headed back up to the hospital thinking it might be a reaction to the meds he had been given the previous week.  I had a feeling it was something else and mentioned it to him before he left for the hospital... turns out I was right... Bell's Palsy

On Tuesday of this week (8 days since the CT scans were done) I sent an email asking if we had any news yet, we were all feeling the stress of waiting to hear the results.  Kaleb ended up needing to come home after his first class as school was just too much.  We picked him up from the school and as soon as he saw Locksley he picked him up and just cuddled him.  Both Kaleb and Locksley went and had a nap.   In the early afternoon we finally got the call we had been anxiously waiting for.  Kaleb's specialist called with the results of the CT scan.  I took the phone into Kaleb's room and woke him up so that he could hear what she had to say and ask any questions he might have.  The CT scans taken were of his neck, chest, lungs, abdomen and pelvis.  

The CT scans are showing no signs of cancer in his pelvis, abdomen or lungs!!  There is however a spot in his chest scan and a couple in his neck that we will have to watch and monitor. His specialist has decided against doing biopsy or a PET scan at this time as his bloodwork is great and he is not showing any symptoms of concern at this time. We have been told to try not to stress as these spots could even have been inflammation from and infection or cold.  

Kaleb is to enjoy his summer and continue getting back to normal life.  We will go back in 3 more months for more CT scans and bloodwork and as always if we have any concerns to let them know.  

Once again, Thank you all from the bottom of out hearts for your love and support

Katt