It’s been 48 days since Jacob’s amputation. Initially we were told that our stay for this would be about 10 days. Mentally I was prepping for closer to a month. I thought that I was tagging on quite a few days extra so there would be no room for disappointment when it maybe turned into 20 days. While we are disappointed that this has now reached almost 50 days with no date yet of going home, Jacob and I willingly accept it as it comes, knowing he is where he needs to be.
After a rough round of chemo that kept him in hospital for 9 days receiving every anti nausea possible, he is now over most of the nausea. Apart from being very tired and having a poor appetite, he feels good. However, he has no immune system at all right now. His counts since chemo have bottomed out, and because he still has an open wound, the risk of him getting an infection and going into septic shock is extremely high. This is the only reason at this point that we are not allowed to go home. The doctors consider Abbotsford too far away should Jacob get an infection or fever. Jacob’s platelets recently dropped to a critically low level as well. This is the first time in his chemo rounds that his platelets have dropped into a dangerous level, and this gives us indication that his body is getting exhausted now trying to constantly rebuild the bone marrow after each chemo cycle. Last week Jacob received a platelet transfusion. Although he couldn’t finish the treatment because of an allergic reaction, ( in typical Jacob fashion!) it was enough to boost him, and we are thankful the medication worked quickly to stop the reaction. Because he is on daily blood thinner injections, low platelets are more concerning because he is already compromised with his blood clotting abilities. A simple nose bleed could turn really bad really quickly for Jacob.
Jacob is back to physio a few times a week, as well as bloodwork, bandage changes and wound checks, which mean daily appointments at the hospital. Staying at Ronald Macdonald House is convenient for that reason. A 5 minute walk to the hospital instead hours in the vehicle is a bonus. If we have to be here, we will consider that a win. ☺️ Jacob has lost almost all of his muscle mass in his left leg. He left bum muscle is completely atrophied as well. Physio includes trying to engage the muscles, and any contraction of the muscle he can make is celebrated, although I think Jacob’s getting tired of his mom cheering whenever he manages to move his bum a bit! He has a long, long road ahead, but he also has the drive and the determination. We are not afraid of the road to getting Jacob into a prosthetic and walking again.
The final pathology report from Jacob’s leg is still not completed. While what we are seeing so far looks positive, we are still waiting on results of the tumor at the top of his femur and the last bone margins, and the wait is getting a bit difficult now as we wonder why it’s taking so long.
Tonight, Jacob and our family are attending the Canucks game, and Jacob will be dropping the ceremonial puck. The game tonight is the kick off game for Hockey Fights Cancer, which is a month long fundraiser and awareness campaign for childhood cancer with the NHL. We’ve heard some comments that we are “so lucky”. I want to take a moment to clarify that although this will be a really neat experience, it is anything but luck. Cancer isn’t lucky, and neither is losing half of your leg. Jacob is fighting a life threatening illness, one that is very tough to beat. This will be a very emotional night for us. What this has done, however, is given Jacob something to look forward to and work towards during his recovery. We were asked about one week after his amputation if Jacob would be interested in doing the puck drop, and while it seemed impossible to picture at the time, it did give him motivation to work through his pain and mobility. What it will also do is give exposure and raise awareness about Jacob’s rotationplasty, as well as childhood cancer. We are very aware of the looks and stares and comments that happen when people see Jacob with is backwards foot. While some have been incredibly rude, we expect the looks and knew going into this that people would turn their heads wondering how it’s even possible. The exposure the Canuck game will give is huge, and for that we are thankful.
But not lucky.
In the meantime, as we wait for either Jacob’s immune system to kick into gear, or until his next round of chemo next Monday, we spend our time hanging around at RMH, doing activities and spending time with other families here, who have just become an extension of our own family. RMH is an incredible place, our home away from home right now.
Thank you for the continued prayers for our family, specifically for Jacob and that no infection sets in, for wound healing, and for our family back home who continue daily “normal” life without us there.
“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” Is 40:31