It’s funny how time has this sneaky way of still passing by, even when you feel like the world has suddenly slammed to a complete stop. Seasons don’t seem to matter. What day of the week it is has no meaning. The date is only important for knowing the next appointment. The “outside” world seems to keep moving, but ours has seemingly collided with this horrendous unfair monster. Yet, somehow it’s August 4. Exactly 2 months ago on June 4 we were told that Jacob had a large tumor inside his femur. June 4, the day the world seemed to stop turning. But apparently time keeps ticking. Summer is half over. 30 days out of the last 42 have been spent admitted in the hospital. Surgery felt so far away at the beginning of this, and suddenly it feels too close. I wondered how we could make it through a cycle of chemo, how I could still be standing, if I would ever smile and laugh again, if Jacob could physically and mentally handle this. And just like time keeps ticking, we keep smiling and we keep standing and we do plenty of laughing. Since the last entry, Jacob was discharged after a bit of a delayed clearance of the methotrexate and we spent the night at Ronald Macdonald House as we had testing the day after discharge from 8 am to 3 pm. His heart, his kidneys, and his hearing all look good so far. These are the 3 organs and systems that have a high chance of being damaged from the chemo he is recieving. A couple weeks ago Jacob had genetic testing done to see if he is highly susceptible to heart damage and hearing loss, and the result came back that he isn’t. For example, the hearing loss seems to affect 40-60% of kids receiving the Cisplatin. But if genetically you show higher risk, that would increase the “odds” to 80%. In any case, we are thankful that after 1 cycle, all of the testing done matches his baseline tests.
Ray picked us up that Tuesday afternoon and we went home for a day and a half. Time back with the family is amazing, but the quick back and forth comes with a price for all – it’s a huge emotional upheaval for everyone. It isn’t coming home to “normal.” This continues to be so hard on the younger kids. It’s challenging for our marriage as it feels like we are living separate lives in many ways. Between housework and errands and bills and unpacking and packing in those short 36 hours home, we did manage a lovely walk at the Vedder River. It is one of our favourite places to be as a family and for that little bit, time seemed to move forward and a sense of normal was found. Cycle 2 of chemo began on Thursday. So far Jacob is doing much better than the first time he had these drugs, but they doubled the amount of medication to control the nausea. Tomorrow we may try take him off the IV meds and move some of them to oral form to see how he does. If that goes well, we could be discharged soon. This cycle of chemo is the one that drops his blood counts so a longer recovery period in between the chemo sessions is needed. Ray and the boys are coming today and staying at RMH for a night or 2. Tomorrow morning, we are receiving a visit from the Gaby Davis Foundation. Our family was chosen for a grant through this foundation as well as gifts for each of the boys. There are so many caring people working behind the scenes to try to ensure that this time of hardship is lightened just a little bit somehow. Amazing individuals who have lost children to cancer but want to keep giving back and showering those going through similar situations with love and care. Though there is a beast waging a war inside my child, so many around us are fighting back with love and prayers and it is incredibly beautiful to witness.
Since the meeting with the surgeon and his team, Jacob had a couple days to process the information quietly before we spoke together about it. While I cannot give too many details, there is direction at this point and a surgery that we are working towards, but the final won’t be known until his repeat scans in the beginning of September. What we do know is that, based on his growth plates, Jacob’s bone age matches his actual age – meaning he has growing yet to do. About half a foot – making his total expected height 6’3”! This will also play into how and what decisions need to be made for pre and post surgery. While we are choosing not to say much more at this time, I do ask for you to pray for Jacob. For peace and acceptance of what is laying before him. For patience, and what appears to be an incredibly long recovery with intensive rehabilitation to get him mobile again. We have 2 goals in mind. 1- survival. 2-mobility I’ll sign off with a picture that sums up our nights here at the hospital. Until next time…. and again, thank you for all the love, prayers and support. 💙