grab a seat and a cuppa tea ..... it's a long one

 Why has this blog post been so hard to write this week??  It's not like we have any big news to share, we are taking everything in stride and life continues on.  Yet, I have been trying/struggling to write this for almost a week and even still nothing seems to want to flow easily.  Maybe because it's hard to always keep a positive light mood to what is going on... the honest truth is this cycle has been a bit of a mental challenge.  None of us wanted to go to London. The hotel stays have already lost their thrill and we now know what treatments are like and how Kaleb reacts to the meds. 

While we were in London for Kaleb's 5 days of treatments, Matt was not given clearance to come into the hospital to be at Kaleb's treatments.  Only the primary parent is allowed in right now due to Covid protocols (meaning I am the only parent talking to Drs. and medical staff getting information and making decisions on the fly when needed.) Last cycle they made an exception as it was Kaleb's first round of treatment and there was so much for us to learn.  This cycle we have a better idea of what is expected and how things are done so only one parent allowed.

So Matt ended up spending that time running errands to the pharmacy, grocery stores (to find something to peak Kaleb's interest in eating as it changes on the daily), any random things that we had forgotten and a bit of clothing shopping so that Libby has a fall coat that will fit her this year.  Matt took care of making sure we had everything needed each day and that Kaleb and I both ate. Making decisions after appointments can be draining even if it's just something simple like what to eat.  At night we would play Mario Kart Racing on the switch.  Kaleb whooped our butts almost every time! Our goal was to try and have some fun banter before going to sleep.  It worked and even though Kaleb was the only one there the one time to witness it.... I won a race!!  On Thursday Matt drove to Windsor to pick up Amelia from school,  first making sure Kaleb and I were settled back in our hotel room after his treatment that day.  After arriving in Windsor Matt had Amelia take a rapid covid test to confirm that she was not sick, they turned around and headed back to London. It was so great to see her again and Kaleb's spirits finally  lifted.  Matt and I sat outside on the patio of our hotel room that evening to allow the kids time to catch up and hangout.  (this also gave Matt and I time to catch up and talk without listening ears).  

Friday morning we headed back to the hospital where Amelia was given clearance to come in and meet with some of Kaleb's team and sit with him during his treatment.  The hospital has a special program where siblings are allowed into the the hospital see what their sibling experiences during treatments and to ask any questions they might have. This is not an everyday option but it is allowed for special circumstances and or if Kaleb is ever admitted into hospital. 

Over the course of the week Kaleb lost more weight but the dietician was still happy enough with the effort he has been putting in.  A week of daily chemo treatments tend to not be helpful when trying to gain weight. His blood counts are good and he even grew a smidgen more! 

Once Kaleb finished his chemo treatment on the Friday, we headed to the pet store to pick out a few fish for Amelia to take back to school.  Kaleb got to name them... so Amelia now has Po (a sunburst wag platy) and Tai Lung (algae eater).  The ride home felt long and Kaleb was feeling rough, we all could not wait to get home and settle in.

When we arrived at home we were greeted by Libby, Nana and Grandad.  Everyone helped us in to the house and after giving us a quick run through of their week Nana and Grandad headed home.  Our house smelt like warm apple butter and our home became lively again.  It felt great to have our kids all together again and to be a family.  (Amelia left for college just before Kaleb started chemo).  Once the kids were all settled and Kaleb had gotten something to eat we pulled out a package that had arrived from The Children's Cancer Foundation earlier.  Each of the kids were sent a teddy bear to cuddle with and to help them feel connected with each other while they are separated from each other. 

After a week away Saturday would normally be our recovery day. But this week it was busy and filled with stress. You see Amelia and Matt were due to have their second dose of the covid vaccine, but every pharmacy in Port, South and Kincardine were not administering over the weekend we were told they would have to wait til Tuesday.  (this being a problem as Amelia would not be at home on Tuesday and she had to show her school that she had her second dose when she got back) So after Amelia made several phone calls she was able to find and book her and Matt in to get their shots Sunday morning in Owen Sound.   Later on in the day we found out from the school that there were 2 confirmed cases of covid in the school.  Stress begins to climb, what should our next steps be?? My kids did not do in person learning last year and they were healthy. Now I have one that is immuno compromised and I am sending him to school??  Saturday my family had their big thanksgiving dinner and sadly we were not able to attend.  It was so hard knowing how close my family was but yet I could not go and spend time with them.  We had been hoping that the rain would have stopped and that the sun would have come out so that we could have visited outside, with surgical masks on and 6ft apart, but sadly that was not in the cards.  We did have one or 2 visitors pop over to the backyard to quickly drop off a little something between rain showers but they were quick and it's just not the same.  Once their dinner was ready we got a call to come to the back fence where my sisters brought us some food to enjoy at our home.  When we got to the fence we noticed that everyone was in the back door of my dad's house waving and wishing us a happy thanksgiving.  

Sunday Matt and Amelia headed off to Owen Sound to get their vaccines.  Kaleb still seemed off and Libby was adjusting to so many people being at home.  I started making a full turkey dinner this way Amelia could take leftovers back to college.  Yep I made a turkey dinner (I have not cooked meat in 3 years) just so that my college kid could have that right of passage experience of bringing home cooked meals back to school. 

Monday came to fast... Amelia felt like garbage, her body felt like she had the flu. She had a headache, fever, sore body and hypersensitive skin and even her hair hurt her scalp.  She went back to bed and tried to sleep some more before she had to leave. Thankfully after her nap she felt like she could manage sitting in the car on trip back to Windsor. Matt also was feeling the effects of the vaccine, fatigue, headaches sore arm and one of his lymph nodes under his arm started to swell (it is actually still swollen and is now about the size of an orange).  After Amelia left we started to pack and get ready to head to London once again.  This time we were bringing Libby so that she could see what her brother does while we are away.  After dropping the dog off with Nana and Grandad we headed off.  Once we were settled in at the hotel Matt and Libby went for a walk down the road to grab some food.  I stayed back at the hotel with Kaleb who was not in the mood to talk to anyone.  Between the meds and the fact that he was getting yet another dose of chemo I am not surprised that he was not thrilled to be back in the city.  

Tuesday we woke up and pancakes sounded good to Kaleb.  After eating we headed out to the hospital where Kaleb, Libby and I checked in and headed to the PMDU.  We talked to Kaleb's case manager and she was happy with Kaleb's blood work numbers.  ChildLife came by and took Libby to a play/art room to talk about what is going on with Kaleb and how she is doing with all of the changes in her life.  While she was there she even was able to make a stress "ball" out of a hospital glove! I stayed with Kaleb while he was getting his treatment.  We met someone who works with "Camp" and she taught Kaleb and I how to play Tenzies (its a game with dice) We also talked again with his dietician and she just continued to encourage Kaleb to keep trying to drink more shakes and meal supplements (she does not want them to replace his meals) Ollie came by and decided to teach Kaleb how to make poop.... the key is to get your hands wet first!! Can you figure out how to make it?? This prank made Kaleb laugh and I was so thankful. 

Once both Kaleb and Libby were done, I sent the kids out to the truck where Matt was waiting for them.  I then had a chance to talk with ChildLife and see if there was anything more we could do for Libby or anything I needed to address.  They were very impressed with her self awareness.  They talked about her coping with fears around covid and gave a few suggestions to try.  All in all they were happy and feel that as of right now she is coping well.  Then I headed to the pharmacy to get a refill on one of Kaleb's meds that I was told would take 45mins.  DOH!!

It rained most of the way home but we did get a break and got to enjoy a beautiful rainbow.  We also found out that there were more cases of covid popping up in our town and that they were bringing in a mobile unit to test over 100 kids.  Needless to say we had a big talk with Kaleb to see what he thought would be best.  At this point he still feels comfortable to be in the school, so that is what we will do.  Shortly after dinner the door bell rang and 3 packages were delivered.  Kaleb had a quilt sent to him at the request of our neighbour Nan. ChildCan sent an Empower Pack for Kaleb to help him stay connected to family and friends while he is away.  And Libby was sent an Art Pack for her virtual Art classes she will be starting soon.  

If you have made it this far .... Thank you for sticking out this monster of a post!!  Again Matt and I want to thank all of you for your support, prayers and love.  They say it takes a village and I am so thankful to have you all in our village.  

Katt