Tough decisions and the end of Cycle 1

4B54E0C7-0F08-4130-9F24-F010A9495613Yesterday 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. 0964482F-88E3-477E-A03B-A52EB5235055

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.  9ADBAE52-53E0-4D7E-93D9-36949F570ACFJacob 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. A07A2F10-A46C-4FB0-B185-0A9ECDD734E3I 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.

11 thoughts on “Tough decisions and the end of Cycle 1”

  1. How does a young man decide about something like this? How does he make a choice? How do parents decide about something like this, or make a choice with and for their son? May God bless the work of the medical team, may God give you clarity, and may God give you peace.

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  2. My thoughts are pretty much what Ginny wrote. Praying for peace, strength and wisdom in the decision making. Praying that the chemo may be effective and that the side effects are few. We love you all. ❤️❤️❤️

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  3. Thanks so much for sharing the things you are dealing with and the decisions that need to be made. They sound overwhelming. Only with God on our side can we face them. We pray for His guidance as you must eventually decide where to go from here. There certainly is no simple answer. May God give you wisdom and then His peace once you have come to a decision. Praying for all of you.

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  4. This is an unbelievably hard road for all of you. Am continuing to pray for you, for strength, peace, wisdom, faith and trust in God to guide every step of the way. He knows all your needs.

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  5. Such difficult decisions ahead. For you, Ray & our precious grandson.
    In the meantime we are thankful all went well & pray any issues are easy fixes. May the weeks ahead help make difficult choice clear. May God bless the medical team as they continue to treat the cancer & that the margins are clean.
    Praying that we all continue to trust in God today & all the days facing us.

    Give thanks to the Lord, for he is good.
    His love endures forever.

    love you! Mom & Dad. 💌

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  6. What a load of information at once, hard decisions to be made on everyone’s part but thankfully we don’t make those decisions alone and we can trust in the Lord to make them with us. Praying for your decisions to become clear when needed and for peace and comfort in each day as they come! Love you guys way to much, Kim and family 🙂

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  7. Love you all. You are always in our prayers. May God give you strength to face each hurdle with trust in him. Lots of love ❤️ from Kyra

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  8. So much for you all to consider….so overwhelming. Thankful that there are options, thankful that Jacob is not facing these decisions alone. May you and Ray be given clarity, and peace of mind in all aspects of this process…..that sucks so much ☹️

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