So much has happened since the last post – I’ll start with Monday, Labour day and go through the week from there. For the last day of summer we went to the Zoo with some family. Apart from Jacob burning his sensitive bald head, it was a wonderful day and a really positive way to end off our summer that really wasn’t summer! School began Tuesday, Evan to grade 5 and Noah to grade 1. Kaleb was registered for preschool but we decided to take him out for this year so there are less schedules to juggle. Jacob, of course, was supposed to begin school at Credo – to head to the big school with the big kids and begin a whole new chapter in his life. We fully accept that this looks so different now for Jacob, but there was still a huge sense of loss and sadness that day processing that he really will not enter grade 8 this year.
Tuesday evening we attended the viewing for Monique Brand. Such a difficult thing to process – seeing the body of someone you love, but knowing they really aren’t there anymore. Wednesday morning my dad picked up Jacob at 5:30 am for a PET scan at the B.C. Cancer Agency, so that Ray and I could still attend Monique’s burial and memorial service. The pain was so raw, and our hearts hurt so much for the Brand family. The memorial service was beautiful and the message from our pastor reminded us that nothing in this life, not cancer, not even death, can separate us from the love of Christ. We believe this so there is comfort and hope amidst so much pain and sadness.
Thursday Jacob had an MRI of his legs, CT scan of his lungs, bloodwork, kindey function testing, heart tests, and hearing tests. It was an exhausting day, but we heard good news. The PET scan shows a large decrease in metabolic activity within the tumors. This means that hopefully most of those cells are dead from the chemo. The tumors are still very much there and need to be fully removed still. The MRI remains unchanged, because the size of the tumors remains about the same – wether they have necrosis or not. Because the tumor is made mostly of bone cells the tumors are hard and cannot shrink or go away on their own – the reason they need to be removed surgically. The photo below is the pet scan from June, pre chemo, and the comparison one from Wednesday.
That brings us to Friday. Back to Children’s again for a meeting with the surgeon and team to finalize plans. The papers are signed, and surgery will take place at VGH on October 4. We have known for some time which surgery Jacob will be getting. There really are only 2 “good” options. Jacob was not ready to share what was happening yet with many, but he has come to a point where he is okay with it.
The surgery is called a rotationplasty. Most of you have likely never heard of this as it’s very rare. Rotationplasty involves a partial amputation of the leg – for Jacob it will be from his upper femur to below his knee. The lower leg and foot are rotated 180 degrees, the length is adjusted, and the tibia is then fused to the femur. The foot is positioned where the knee used to be, with the heel portion in front and the toes pointing back. The ankle now functions in place of the knee joint. The primary reason for rotationplasty is to enhance the person’s mobility as a prosthesis user. Placing the ankle joint in the position of the knee creates a functional, natural knee, and the toes provide important sensory feedback to the brain. So instead of Jacob having a full amputation, he now has a partial below knee amputation which will give him the best mobility possible with no limitations once he is recovered and rehabilitated. The appearance of the limb following rotationplasty is very unusual and is a concern for many people from both a cosmetic and a psychological standpoint – which is why Jacob was hesitant to share this until he was really ready. We know it will look “strange” but we also know it will give him the best chance at an active lifestyle, something that is so important to him. The other surgery option would mean never running again, never jumping again, multiple repeat surgeries to replace parts. The rotationplasty will hopefully only require one major surgery, and a minor to remove growth plates down the road. Jacob is bravely choosing this rare procedure and we are so proud of him. As are all the doctors and nurses here. Hopefully the diagram below gives you a clearer understanding of what will be happening.
This is huge – forever life altering for Jacob. The surgery is complicated – for this reason it will be done at VGH where there will be a team of vascular surgeons to support as well. Jacob’s main artery in his leg will be cut and need to be reattached. The nerve stays intact and gets “coiled” up in his leg. Recovery will be long. Chemotherapy will slow down his recovery as his body tries to fuse the upper femur to the tibia and become one bone. Until that happens, Jacob cannot attempt walking. There is so much to try process yet as we get closer, and anxiety will rise as well. Continue to pray for Jacob- to accept the changes to his body and patience for the recovery. For the rest of our family as we support Jacob and also try come to terms with this all as well.
Friday also marked the start of Cycle 3 of chemo, round 6. This is the last chemo before surgery as he needs the next 3.5 weeks to recover and hopefully his counts will be high enough by October 4. This round of chemo hits Jacob especially hard. Friday was also Evans 10th birthday which we celebrated at the hospital. He was spoiled, loved the decorations and the Harry Potter cake made by a friend. Evan is struggling mentally with everything that is going on, so I wanted to make his birthday still stand out and be memorable to him. In any case, he recieved enough LEGO sets to keep his brain occupied for the next while!
So, that’s our week recapped! The week was exhausting and emotionally draining. On Sunday I was questioning if I could even make it through. But it’s Saturday now. We did make it through. With support from family and friends, and the strength only God can supply at a time like this…