Rotation what??

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So much has happened since the last post – I’ll start with Monday, Labour day and go through the week from there.  For the last day of summer we went to the Zoo with some family.  Apart from Jacob burning his sensitive bald head, it was a wonderful day and a really positive way to end off our summer that really wasn’t summer!  School began Tuesday,  Evan to grade 5 and Noah to grade 1.  Kaleb was registered for preschool but we decided to take him out for this year so there are less schedules to juggle.  Jacob, of course, was supposed to begin school at Credo – to head to the big school with the big kids and begin a whole new chapter in his life. We fully accept that this looks so different now for Jacob, but there was still a huge sense of loss and sadness that day processing that he really will not enter grade 8 this year.  EF13B207-E898-44F3-AE2C-B254020063D0

Tuesday evening we attended the viewing for Monique Brand.  Such a difficult thing to process – seeing the body of someone you love, but knowing they really aren’t there anymore. Wednesday morning my dad picked up Jacob at 5:30 am for a PET scan at the B.C. Cancer Agency, so that Ray and I could still attend Monique’s burial and memorial service.  The pain was so raw, and our hearts hurt so much for the Brand family.  The memorial service was beautiful and the message from our pastor reminded us that nothing in this life, not cancer, not even death, can separate us from the love of Christ.  We believe this so there is comfort and hope amidst so much pain and sadness.

Thursday Jacob had an MRI of his legs, CT scan of his lungs, bloodwork, kindey function testing, heart tests, and hearing tests.  It was an exhausting day, but we heard good news.  The PET scan shows a large decrease in metabolic activity within the tumors. This means that hopefully most of those cells are dead from the chemo.  The tumors are still very much there and need to be fully removed still.  The MRI remains unchanged, because the size of the tumors remains about the same – wether they have necrosis or not. Because the tumor is made mostly of bone cells the tumors are hard and cannot shrink or go away on their own – the reason they need to be removed surgically.   The photo below is the pet scan from June, pre chemo, and the comparison one from Wednesday.  F3369339-ECFC-4B1C-8BFF-5346F9CE5F34

That brings us to Friday. Back to Children’s again for a meeting with the surgeon and team to finalize plans.  The papers are signed, and surgery will take place at VGH on October 4.  We have known for some time which surgery Jacob will be getting. There really are only 2 “good” options.  Jacob was not ready to share what was happening yet with many, but he has come to a point where he is okay with it.

The surgery is called a rotationplasty.  Most of you have likely never heard of this as it’s very rare.  Rotationplasty involves a partial amputation of the leg – for Jacob it will be from his upper femur to below his knee. The lower leg and foot are rotated 180 degrees, the length is adjusted, and the tibia is then fused to the femur. The foot is positioned where the knee used to be, with the heel portion in front and the toes pointing back. The ankle now functions in place of the knee joint. The primary reason for rotationplasty is to enhance the person’s mobility as a prosthesis user. Placing the ankle joint in the position of the knee creates a functional, natural knee, and the toes provide important sensory feedback to the brain.  So instead of Jacob having a full amputation, he now has a partial below knee amputation which will give him the best mobility possible with no limitations once he is recovered and rehabilitated.  The appearance of the limb following rotationplasty is very unusual and is a concern for many people from both a cosmetic and a psychological standpoint – which is why Jacob was hesitant to share this until he was really ready.  We know it will look “strange” but we also know it will give him the best chance at an active lifestyle, something that is so important to him.  The other surgery option would mean never running again, never jumping again, multiple repeat surgeries to replace parts.  The rotationplasty will hopefully only require one major surgery, and a minor to remove growth plates down the road.   Jacob is bravely choosing this rare procedure and we are so proud of him. As are all the doctors and nurses here.  Hopefully the diagram below gives you a clearer understanding of what will be happening.  8550AA56-C0D9-4ED7-9C65-DDB764C2575F

This is huge – forever life altering for Jacob.  The surgery is complicated – for this reason it will be done at VGH where there will be a team of vascular surgeons to support as well. Jacob’s main artery in his leg will be cut and need to be reattached.  The nerve stays intact and gets “coiled” up in his leg.  Recovery will be long. Chemotherapy will slow down his recovery as his body tries to fuse the upper femur to the tibia and become one bone.  Until that happens, Jacob cannot attempt walking.  There is so much to try process yet as we get closer, and anxiety will rise as well.  Continue to pray for Jacob- to accept the changes to his body and patience for the recovery.  For the rest of our family as we support Jacob and also try come to terms with this all as well.

Friday also marked the start of Cycle 3 of chemo, round 6.   This is the last chemo before surgery as he needs the next 3.5 weeks to recover and hopefully his counts will be high enough by October 4.  This round of chemo hits Jacob especially hard.  Friday was also Evans 10th birthday which we celebrated at the hospital.  He was spoiled, loved the decorations and the Harry Potter cake made by a friend.  Evan is struggling mentally with everything that is going on, so I wanted to make his birthday still stand out and be memorable to him.  In any case, he recieved enough LEGO sets to keep his brain occupied for the next while! C0025F9F-A2FB-4EC0-966C-D62B79832ED0

So, that’s our week recapped!  The week was exhausting and emotionally draining. On Sunday I was questioning if I could even make it through.  But it’s Saturday now.  We did make it through. With support from family and friends, and the strength only God can supply at a time like this…

16 thoughts on “Rotation what??”

  1. One day at a time! It was a very heavy week…good job explaining Jacob’s surgery to us common folk. It’s amazing that something like this is even possible! Surgery day is also my birthday, only good things can happen! 😊

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  2. Isn’t it amazing how the Lord holds us up and helps us to put one foot in front of the other, in order to do everything that needs to be done, even when we falter. Amazing Father if us all. Continued strength for all of you.

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  3. The Lord is your keeper, the Lord is your shade on your right hand. (Ps. 121:5). The Lord’s arm is not too short (weak) to save you, nor his ear too dull to hear you. (Isa 59:1). Continuing to pray for healing and for strength for all of you, as you need it.

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  4. this surgery procedure, while bizarre, sounds so amazing, that they can preserve the nerve , and use the ankle in this way…this speaks wonders to me. Continued prayers of peace and courage for all of you especially Jacob. You are held by so many, may this grant the strength and comfort that you still need. HUGS ❤

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  5. Tracey, as much as this is hard for Jacob and your whole family , it is also fascinating. Your and Jacob’s strength helps many to see how trivial our problems are. I know I’m being candid but I know how much an honest conversation can carry you. This procedure is nothing to be embarrassed about. It is a gift in a horrible situation. I will be honest, after my sisters death and my personal pain last year I lost a sense of faith. Your strength has made me want to find it again. Jacob is at a tender age, body image being a huge part of these teenage years. But, body image is more about how we perceive others and how it effects our own image. Jacob will become a man of strength, acceptance and compassion, character traits that are admirable. You are great parents that provide a stably, loving and supportive upbringing to your sons. You will weather this storm and be better for it in the end. My heart goes out to you and my prayers for Jacob are a daily reminder of why I need faith in my life! Hugs to you all but as a mother an extra hug to you!

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  6. Thinking of you so often and praying for you all! Hope the surgery goes well and that Jacob will receive enough of his strength back for the next treatments! May God be with you all!

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  7. Jacob …. you are a true fighter! Your showing us all …. I admire you! You will come through this like a Champion! I will keep you in my Prayers! I like your name and named my New Lab “Jake” ( He is a Fox Red Labrador… 5 mths….. and a bit “Crazy” I think) But, I Love him 😉

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  8. Holding Jacob up in prayer every day, as well as the rest of you! Praying for strength and healing! It’s amazing that different body parts can be used in this way, to compensate where there is need! Makes us stand in awe of the Creator and Sustainer of life!

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  9. What a draining week!! Our prayer go out for you all. Happy Birthday Evan! Tydus thought it was cool that you got to leave school early! The surgery looks complicated but super interesting, thank you for sharing with us. Finally, we are praying Jacob remains strong and that this round of chemo doesn’t hit too hard.

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  10. Praying that the surgery for his leg goes as expected and hoped for. Its fascinating! We are in an online support group for kids with FH (our 3 year old daughter was born with) and we see some kids on there that wear prosthetics with the same surgery done that Jacob will have, so to me its not unheard of or unseen. These kids rock, they function, they run, they “blend” in with the rest. Its a great option to have to eliminate cutting those nerve endings! Have no fear, Jacob will be strong and adjust. May God bless you in the months ahead with faith and much comfort.

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  11. Wow what a week! Praying for you guys continuing on as you now have a plan in place for the future, keep up the strength and the trust in the Lord, thanks for sharing and giving us a clearer understanding.

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  12. Hi – my name is Dwayne Leffers, married to Trixie and we have 6 kids. Our family has been praying for you guys on a weekly basis. I am 44 now, but lost my left leg (above knee) in a farming accident when I was 11 (1986). My story is quite a bit different in that I had no advance warning something like this was coming – so I don’t pretend for a second to understand your anciety and uncertainties. At the time of my own accident, I thought any semblance of a ‘good’ life was over for me, but wow was I wrong. As I look back on my life since, I can see certain ways that this life changing event resulted in good – and can thank God for this. I thought I would never marry, but in fact married someone who saw me for who I really was and not just what I looked like or what I could do. My accident was life changing – I believe it has kept me more focused on what’s important. I always have my mind on eternity, because I know everything will be restored to perfection again – and if my accident has kept me from being led astray by worldly desires, then its a small price to pay for eternal glory with my Saviour. This has also humbled me – I could only speculate what kind of arrogant person I may have been otherwise. My accident has not held me back. I have participated in most sports – waterskiing, snow skiing, and you name it – can’t move as fast as others so not gonna make it in the pros, but I have found a lot of other things that bring me joy. I developed a love for motor sports – hey, if my legs won’t carry me fast, my dirtbike sure does!! I have 6 beautiful children who bring me a lot of joy. This is a really long reply, but my point I guess is trust God – he has a plan for you and your family. Sounds like some tough sledding ahead, but trust Him for strength. Probably hard to see the good in it now, but we grow leaps and bounds through adversity. Praying for God to give you comfort and strength through this. Hang in there Jacob!

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  13. Hi Jacob! Its good to see that the chemo is working well so far! That’s a really interesting surgery! we are so thankful they can do something like that. Thinking and praying for you ever day!
    -Sam

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  14. WOW – that is such an amazing procedure and yes, when he takes his leg ‘off’ it will no doubt take a bit of getting used to seeing the ‘new’ shorter reversed limb but, as someone who had all three joints amputated (ankle, knee and hip) I am INCREDIBLY impressed (and a little jealous lol) that this is even a possibility over total amputation! He will ROCK his prosthesis and will be off and running before you know it! God bless you all and continue to give you strength and courage ❤

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