A long road ahead, but not without hope

As many of you know, Jacob has now had his rotationplasty amputation yesterday. The weeks leading up to the surgery were heavy. Nothing could shake the thoughts of what was coming. What held us up was the care and love of so many around us. Family and friends. Church community. School communities. Neighbours. Messages from people around the world that they are praying for Jacob and our family. Families we know through Children’s Hospital. The nurses and social workers. We have been carried in ways through God by each and every one of you. We are overwhelmed by the love shown. Thank you from all of us 💛

Yesterday was hard. Really hard. We were at VGH by 5:30 am. After some pre op details were completed, Jacob was ready to go to the OR by 7:30. We asked for a bit of time alone with him to pray and hold each other. This was extremely emotional. Jacob, Evan, and Ray were crying as they said goodbye to each other before I walked down with Jacob to the OR. For sanitary reasons I was not allowed to enter the OR but only go up to the doors with Jacob. When they said it was time to go in now, Jacob broke down sobbing. I begged them to let me in with him until he was sedated because I could not leave him the way he was. So afraid. So helpless. They finally decided to get the anesthesiologist to come into the hallway and partially sedate Jacob before he entered. Within a minute he had calmed down, so I hugged and kissed him, told him I loved him, and had to walk away. This is one of the hardest moments of my life. Everything in me wanted to turn back and stay with Jacob, to know what was happening that second, to hold his hand and tell him I loved him through all of it. I broke down as I walked back with a nurse escorting me back – she was also crying from the emotion of it all. And so started the long wait. Some friends and family came throughout the day to be with us. For 9 long, agonizing hours we waited with no updates at all from the OR room. The first half of the wait went well, but as each minute went by the 6 hour mark with no updates, it felt like too much to bear and we wanted to see Jacob so badly. Finally at 5:30 pm, the surgeon came into the waiting room. He assured us that all had gone well. He was happy with how everything had gone through the surgery. The plan was to leave 10 cm of Jacobs femur, but it ended up being only 8 cm left at the top. The incision runs around the upper leg just under his bum cheek and the doctor thinks that plastic surgery will be needed down the road. Jacob’s hemoglobin dropped from 125 to 80 during the surgery, and he continues to lose blood now through a drain in his leg. He will likely need blood transfusions in the coming days. Jacob stayed in recovery until 10:30 pm as they tried to manage his pain. He is on an epidural that puts hydromorphone continuously into his spine to numb his legs. Unfortunately most of the numbing is in his right leg, but it’s his left leg that had the amputation. The pain is under control at the moment, as long as he doesn’t move. He has pretty bad nausea from the pain meds and anaesthetic. Despite all this, he is still in relatively good spirits. Seeing him in recovery was so amazing, and a bit scary at the same time. He smiled as soon as he saw us and proudly told us he was already wiggling his toes. After hugging him, we looked at his “new” leg. As much as we prepped and processed mentally for this, there really is no way to prepare to see your child after his leg has been amputated, what was left brought up, turned around, and reattached. There are no words that I can think of to explain how it felt. He is so brave and so strong though, and continues to inspire us with his strength and courage.

Once Jacob was brought up to the orthopaedic trauma unit, we got him settled, reassessed and we tried to get some sleep. The road ahead will be difficult. There will be lots of pain as the incision heals and his body works to mend the muscles, bones, ligaments, veins and arteries that were reattached. Jacob’s main artery was cut and sewn back together, so he will likely be on blood thinners for the rest of his life because of this. He is resting comfortably right now, and we may try get him to sit up today for a few seconds.

The good news is that the tumors in his femur and his knee are now gone. A glimmer of hope in this really difficult time. We now need to wait about 2 weeks to hear back from pathology about the necrosis (death) percentage of the tumor. We are praying the percentage is high, as this is an indication of how well the chemo is working. We pray and hope so badly that all the cancer is now removed from Jacob. That whatever cells in his body from the spread through his bloodstream have been killed by the chemo, and will continue to be killed off by the 5-6 months left of chemo yet to go.

The plan going forward is to stay at VGH for the next 4-5 days, and then be transferred back to Children’s, which is where we really want to be. Once his incision is healed, chemo will resume. This could take 2-4 weeks if all goes well. Pray for his healing, that no infection sets in, that his white blood cells continue to rise, and that no complications arise through the next weeks as he heals.

“He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”…He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.  You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.  A thousand may fall at your side, ten thousand at your right hand, but it will not come near you…For he will command his angels concerning you, to guard you in all your ways…“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him…” Psalm 91:1-16