it's not always easy

 

    Friday morning things became a little more real, Kaleb went into work for a few minutes to talk with his boss (they were reassuring him that his job is there when he is ready to come back and that they are thinking of him)  While Kaleb was standing there talking he all of a sudden turned completely grey, started sweating profusely, had tunnel vision, his fingers went numb and he was nauseous, feeling like he was going to faint.  I rushed him home gave him some meds and he went to bed.  All weekend he struggled to find food that interested him and yet he wanted to eat. The chemo started to show its effects on him as he struggled with energy levels and digestion issues.  

    Thankfully Easton a fellow warrior ... (only 5yrs old) came to our rescue and suggested a few different options that has helped Kaleb throughout this week.  - sorry Easton we still can't get Kaleb to try sauerkraut but we will keep trying!!

The realization came to the forefront... he really is sick and we didn't imagine it.  I mean we knew he was sick but this was the first time it jumped out and slapped us against the face since he started treatment.  

    Monday he was able to muster enough energy to attend school for an hour.  He came home relieved that he was able to meet his teacher and he was able to get his first assignment handed in.  Despite everything Kaleb has had thrown at him, he still has the drive to not fall behind and to put his best foot forward for school.  

    Tuesday was hard. It was a mental health kinda day. Energy levels were still low, headaches and Kaleb's hair started to fall out.  We don't know how much longer he will have it before its all gone.  We have been told it will grow back, all though it may be a different colour or texture.  

    Wednesday morning came too early (5am - no one should get up at that time!) We headed out at 6am for London. The drive was long and full of rain, wind, a route to figure out (thanks to google we are learning a new route every time we drive to and from) and lack of tunes.  We forgot our speaker so it was a great oppertunity to talk.  Matt went into work late so that Libby had someone at home when she woke up in the morning. (it also gives her some much needed one on one time with Dad). We are still trying to figure out how to juggle/manage work with Kaleb's appointments.  

    Clinic was a long day.  We arrived and found out that Kaleb now weighs 119 pounds. He lost 5 lbs in one week despite the amount of food he had been eating.  We met with the Clinical Dietitian and went over everything Kaleb eats, what our diet is like and then she explained what she would like us to do/try to maintain his current weight (ideally gaining an extra few pounds would be great but for right now they are hoping to maintain) This will mean more meals for Kaleb during the day . . . maybe Libby was right all those years (she used to introduce Kaleb by saying "this is my brother Kaleb, he's a hobbit because he eats so much") 

    He had his bloodwork done and everything looks good but his neutrophils are a little low, (Neutrophils are the cells that help fight off infection) so we need to watch for fevers. 

    Chemo was a go so Kaleb had another dose of VCR and DOXO (also known as the red devil). During his treatment we met with his school liaison and talked about how school was going.  He was reminded that he needs to be kind to himself and remember that he is still in the early stages of treatment so it will take time to figure things out.  ChildLife came by and talked with him about how he was feeling and explained some of their resources that might help him on this journey. An amazing organization called ChildCan dropped off a care bag for Kaleb that included a quilt to stay warm during travel and treatment.  (They also dropped off a parking pass for us and a few other things to help us during this time)  

    Kaleb's specialist came in and talked to Kaleb and I (this was not expected - Mondays are her days to be in clinic) The results from the Tumour Board came back. Kaleb's official diagnoses is Stage 4b Hodgkin Lymphoma. The cancer is in his lungs/chest, neck and there is diseased bone on his hip that looks like lymphoma.  They will not be testing the bone as the treatment will not change at this point.  He will have 6 rounds of Chemotherapy. At the end of October he will undergo another PET Scan to see how his body is handling the treatment and how the cancer is reacting to treatment. It is at this time they will decide if radiation will be needed.  His finger tips are numb-ish, they are going to keep an eye on those but that is a side effect if one of his chemo drugs.  On a happy note they were shocked and happy to see his neck is almost fully back to normal!!  

    We finally got out of the hospital around 2pm, went and grabbed some takeout and then headed home in the pouring rain.  Once we made it out of the city Kaleb crashed and slept for most of the drive (this is not normal for him).  We arrived at home just before dinner was being dropped off.  Libby came running out with an umbrella and helped her brother into the house before returning to help me with all of the bags. (we have to pack an emergency bag for every trip just incase we have to stay overnight) Matt got home with the dog shortly after and we enjoyed tacos as a family.  The kids were both in bed before 9pm and Matt and I had a chance to catch up for an hour before we headed off to bed.

Thank you to everyone who has reached out to our family, thank you for taking time out of your schedules to make meals for our family, thank you for popping by for a quick front porch visit, thank you for your generosity, thank you for the quick little texts telling us you are praying for us. We can't ever thank you enough for joining us on this bumpy road.  We feel your love and are so thankful for you all.

Katt