Jacob is recovering well, all things considered. His attitude is still so positive. We are so thankful the surgery went well and that it’s “behind us.” Some people have said to us that it must be such a relief to have it behind us now, but the reality is that it’s just become a different kind of stress. The last few days have been so difficult watching Jacob go through such a huge trial. The upcoming weeks will still be filled with anxieties – the chance of infection setting in, or any surgery complication. The risk of a blood clot. Waiting for the pathology report to come back. If the margins from the femur and knee removal come back positive in any way for cancer, full amputation of his leg will happen. Waiting for the necrosis level of the tumors to see how well chemo is working. Starting rehabilitation and watching Jacob go through pain. Starting chemotherapy again. Not wanting to start too soon for his weak body, but not starting much later for fear the cancer cells will have a chance to start growing. It feels surreal at times, and it feels like too much to bear, yet there is no choice.
Jacob’s pain is being managed very well with the epidural and oral pain meds. So much better than I could have imagined. The first couple days he did not move at all and has not been eating or drinking. He has had nausea off and on and there are no foods that appeal to him. His hemoglobin dropped to 56, a critical level. His vital signs were poor for a couple days – fever, very high heart rate and low blood pressure. After receiving 2 blood transfusions all of that turned around by the next day and his hemoglobin is at 78 now – Still very low but tolerable for now. The doctors are lowering his epidural pain meds to try wean him off, because he needs to start strong blood thinners to reduce the risk of a blood clot for the next few months, but they cannot start it while he has the epidural. He is very weak, but today we did see some improvement with him. 2 physiotherapists helped him to sit up today for the first time. It was painful for him, and painful to watch as well. My heart breaks watching him suffer, seeing him so helpless and weak, knowing he won’t walk again for a long time and will have to endure so much more pain yet. He is incredibly courageous and the doctors and nurses continue to be amazed by him and his attitude. The rotationplasty surgery has never been performed at VGH before, so almost everyone here who meets him has never seen this type of procedure. He is the youngest person to be on this ward, so the nurses are treating him quite well, but we really are looking forward to getting back to Children’s Hospital on Tuesday.
There is so much to go through yet, but we take it minute by minute, hour by hour. Thank you too our friends and family who support us unconditionally through all this. I may not have the time or the energy or just the mental strength to message you all back or update you all personally, but know how much the love and care is appreciated. The prayers from each of you have carried us – we know where our strength and hope comes from and continue to put our trust in God and His plan for Jacob’s life. We continue to accept what’s on his path, but that is not without struggle. It’s hard to come to terms with the fact that Jacob is an amputee now, that he was given such a horrendous disease that took part of a limb from him and that he has to continue with chemo that will affect and weaken his body for the rest of his life.
We know many of you are probably “curious” to see what the rotationplasty looks like, and Jacob is ready to share a photo in the blog. He is not ashamed of it. It is an incredible procedure giving him another chance at life, another chance to be active and participate in all the things a teenage boy should be doing. Please continue to pray for patience while he recovers. It will likely be about a year before he is able to be in his prosthetic leg and bear full weight on it.
I’ll end off with part of Psalm 62 which our elder read with Jacob and I tonight. David wrote this while being under attack by fierce enemies plotting to kill him, and I imagine he was very afraid and desperate. Yet in such a threatening time, he felt peace and unshaken while seeking refuge in God – as we do while we watch Jacob under attack from cancer, terrified and desperate, threatened…yet peace knowing God is our refuge and strong tower.
” Psalm 62:5-8