Tough decisions and the end of Cycle 1

Yesterday Jacob had his last chemotherapy infusion for Cycle 1. We are so very thankful that, with premedication, he did not have an allergic reaction.  It is critical that he can continue to receive this drug for the next 7–9 months of treatment.  Jacob feels pretty decent overall after Methotrexate – another thing we are thankful for.  He is exhausted and his appetite is small, but he already started to eat again today. 

Today was a busy day.  Jacob had a physiotherapy session to strengthen his upper thigh muscles. This is critical to him becoming mobile more quickly after his surgery. Last week he did not have the strength to lift his own leg off the bed because he has lost most of the muscle mass from not being able to use his leg since May.  After only a few days of helping him through physio exercises he has regained some of the strength back.  It’s difficult to see, knowing that only a few months ago he was jumping and running and playing and even had a job lined up with an electrician for the summer – and all of that has been taken from him for now.  Yet, he remains in such good spirits. He is an inspiration to me, and many others around us.  The road ahead will be so very difficult. We remain thankful for small things, especially his beautiful smile.  Jacob had an echocardiogram of his heart done today. Every cycle of chemo he will get one because one of the chemo drugs can affect his heart function. While his heart looks good, the cardiologist saw 2 reasons for concern.  One is that the catheter heading towards his heart from the port is too close to his heart and heart valve.  He is now on a heart monitor to look for any rythym changes for the next few days. The other is that they see a bright spot, which could be benign tissue growth because of the foreign object in his artery, or it could be an infection.  His white blood cell level is high, so he is being closely monitored for this as well. If there is an infection or they feel the catheter needs to be moved, this will mean another surgery or 2 to correct the problem and replace the port.  Jacob is already going through so much, so we are really hoping that won’t be the case. I also met with the surgeon and his team today, with Ray joining in via FaceTime. We were given more information about what Jacob’s options are for his leg. There is 2 options to consider.  For both options he will be losing all or most of his femur and his knee as well.  There are many scenarios to think of as well as Jacob’s future and his activity level.  One would provide him more flexibility in regards to sports, particularly high impact sports such as basketball, and would only require one surgery typically but a much much longer recovery and rehab.  The other would limit him physically allowing him to still walk and play but he would no longer be able to jump on the trampoline or play basketball competitively.  The information is overwhelming and will require several more meetings with the surgical team and the pain management team as well. After the meeting I came back to the room with the surgeons assistant to give Jacob a generalized break down of what was discussed. Jacob listened but did not give any reply or thoughts on it – not one word.  He will need time to process it all and work through the different options and limitations and what he feels is most important for himself in the future.  This will affect him for the rest of his life and ultimately will be his decision for which option he chooses.  The only way that option would change is if they do not get clear margins from the surgery – and then full amputation is the only option. Everything must be considered including how much growing he has left to do. For this they Xrayed his left hand to look at his growth plates. They can figure out his bone age from this and a fairly accurate guess on how many more inches he will grow yet.

Please continue to pray for Jacob – that the chemo kills whatever cancer is inside his body. That the heart and port concerns do not become real issues. That he will have patience and peace and be able to process all the information being thrown at him in regards to making such a weighty decision.