Jacob is officially halfway through his chemo – 9 rounds down, 9 more to go. Looking back is hard on us, and stirred up many emotions again. It’s almost impossible to really fathom everything that has happened in the last 6 months. Have we even begun to process it? Has the fact that Jacob lost half his leg really hit us yet? I am still in the Category 5 hurricane mode, triaging almost everything in front of me. If it’s insignificant or I don’t have the brain space for it, it quickly gets tossed aside. The reality of all this is that we are constantly in a state of trauma – low level, medium, high…for ourselves, and for the people we love and care for around us that have become so dear, and are fighting their own battles.
Jacob is doing well this round with no toxicity. We are heading into day 10 of this hospital stay as his body is struggling to clear the chemo from his blood. A typical stay for the high dose methotrexate is 3-4 days, with clearing happening at, ideally, 72 hours. We are at hour 200 now! No one is really surprised by this, as Jacob has yet to have a “typical” round. His neutrophils ( immune system) are at critical levels again which means staying at RMH this weekend, if we manage to get discharged before then, and his next round of chemo beginning already this Monday. The protocol has intensified for the last half, meaning about 75% of the time will be spent in hospital.
Everyone keeps asking us if we will get home for Christmas, and while we would love to give a resounding yes to this question, it is almost 100% that the answer is a disheartening no. Jacobs wound is still open, with risk of sepsis too high to leave the hospital grounds. The next round of chemo will keep his immune system at critical levels for the next 2 weeks. While this is disappointing, our hearts really aren’t in the “Christmas spirit”. It’s hard to even look ahead to Christmas Day because things remain so fluid and changing all the time. Home feels far away and is starting to not even feel like home anymore. We look forward to the kids and Ray visiting us at RMH, and their presence is what matters. Home now comes to us, and Jacob and I are content with that.
The full pathology report is finally in for Jacobs leg. The overall death of the tumours was 95%. Most of the margins were good, but one margin was only 0.4cm away from the tumour. A good margin is 3cm or more, however there was an intact bone membrane in this margin which the surgeon feels is adequate. Jacobs bone has showed no sign of healing yet. Xrays will happen every 6 weeks or so to keep assessing if the bones are trying to heal together so that we can begin the process of getting a prosthetic leg started and to begin to bear little bits of weight on his leg.
Many people are asking why chemo still has to happen if his tumours are gone now. This cancer is extremely aggressive. Because Jacob had a second tumour, there is very high chance of spread elsewhere called micro metastasis. The chemo now is to kill those cells – invisible on scans, but almost certainly there.
Thank you for the continued prayers and visits. They mean so much to us. We have been away from home now for 75 days, with a new goal now to get home in January sometime. I am missing our Krabbendam family adults only Christmas party tonight – but I am sending Evan in my place to be me. 🤣 Jacob remains in very good spirits, which I am also so thankful for. We have lots of fun together and get along unbelievably well considering the amount of time we spend together!
“For My thoughts are not your thoughts, neither are your ways My ways. . . . For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts” Isaiah 55:8-9