Wish Trip and 8 Week Scans

It’s been almost a month and a half since I posted a blog, and truthfully, I don’t miss “blogging.” There was a time when someone I knew was diagnosed with cancer and he blogged frequently, and I had a discussion with a sister on if we thought we would blog should something like that happen to us, and I had concluded that I probably would not want to share something so personal with so many people. Little did I know cancer was lurking around the corner waiting to pounce on my beautiful family, and that I indeed would become someone who “blogged” and shared the journey, expressed some of the emotions felt, and informed thousands at a time about how we were doing.

So how are we doing? That’s a big question, but the overall answer is that we are all doing really well. Jacob feels well, his energy is slowly improving, and he is building muscle back and gaining weight. It has been so nice to be home more and all the kids are happier for it. To be able to go out and not worry about a fever or being too far away from the hospital or hiding inside because Jacobs counts were at 0 has been really refreshing, like there is some “freedom” again in our lives. Jacob does get bored as he is limited physically, still on crutches so cannot use his arms and hands for activities, and still has lower than typical energy. He still spends a lot of the day on the couch, reading, chatting with friends, listening to music, and watching YouTube. He recently bought himself a quad, and we are all having fun ripping around the farm and working on an area behind the barn to make a quad track with jumps.

Jacobs Wish Trip to Europe has come and gone. We went on a cruise on the Rhine River and toured some cities in Germany, France, and Switzerland. The holiday was incredible, the sights amazing, and the time away with our family without having to deal with cancer or hospital visits was beyond refreshing. Children’s Wish Foundation, an organization providing “wishes” for children with life threatening illnesses across Canada, granted Jacobs Wish, organized everything from the parking at the airport to the transfers from flights to the boat, booked flights, booked the cruise, and provided some spending money for tours and souvenirs as well. Yet another charity organization that has stepped into our lives to provide some form of help and support for us. Again and again we are astonished by the amount of people that step in to care and carry in various ways.

Jacob recently had his 6 week scans, which were delayed so they became his 8 week scans of his lungs. The next day we had the results, and there is no sign of cancer seen, keeping Jacob in remission. There is always some anxiety and feelings of fear with scans, and waiting for results, yet we all still feel the presence of God with us – providing us peace. That being said, even though these scans are now “routine” every 6 weeks, they feel nothing at all like “routine”. This isn’t a dental cleaning or oil change – and no matter how many years pass as we keep testing Jacob, not a single part of this road with cancer has felt routine.

Jacob continues with physiotherapy at home. Linda, our physiotherapist, drives in from Vancouver twice a week, and works with Jacob from a couple hours each time. Jacob is now allowed to bend his prosthetic leg when he walks, so it has becoming more challenging as his brain has to do a lot more thinking as he moves, but in typical Jacob fashion, he picked up on how to do it very quickly. It’s still a slow process for him. He is wearing his prosthetic about 4-7 hours a day, and our goal is to get him to be able to handle a school day wearing his prosthetic all day come September.

Jacobs port was surgically removed from his chest and heart on June 21 – exactly 52 weeks after it was put in. The surgery went well with no complications and Jacob was allowed to keep the port so we could use it for target practice at home. 😋 Jacob has another surgery scheduled for Aug 1 to remove the growth plates in his femur of his “good” leg, which will put him back in a wheelchair, require a 6 week recovery and set him back with physiotherapy. Because his rotationplasty leg is mostly tibia, it will grow at a 1/3 of the rate as his other leg, so to keep the knee and the ankle aligned, they need to stop the growth of his healthy femur.

I will continue to blog, but likely only every 6 weeks or so when we get scan results back – to keep the many readers informed. And while I’m happy to report less and less frequently, I do hope and pray that somehow, someway, sharing Jacobs journey has touched your life, encouraged you, or brought you closer to God or those around you.

And celebrate we will…

Last week at Jacobs end of treatment scan results, we received 4 wonderful words…. 4 words we hope and pray to continually hear over and over through the years before he reaches the 5 year mark when he can be deemed cancer free -in 2024 when he is 19 years old. Those wonderful 4 words were No Evidence of Disease.

After almost a year of treatment, Jacob is in remission as far as the doctors can tell. While this is so incredibly amazing and assuring to hear, and very worthy of celebrating – it is a subdued celebration. A hesitant and almost sober celebration. But celebrate we will….

Jacobs kidneys are looking great, and have already regained some of their function which means they are healing from the acute injury and beating from each Methotrexate treatment.

Jacobs heart scan looks perfect. He actually has a higher percentage of blood pumping though per beat than typically seen, which will hopefully serve him well as gets older and the chemo begins to show the late term side effects on his heart. Jacob will always be a heart patient now, being followed for the rest of his life as the doxorubicin given almost always causes heart health issues down the road.

Jacobs hearing remains unchanged. Cisplatin tends to effect the high pitch hearing, and many who receive this chemo in the high doses Jacob has been given, end up with hearing aids. As it looks now, he won’t need them at all.

X-rays were also done of Jacobs “little leg.” There are some concerns. While the bones are almost grafted together, all the bones in the leg are showing osteopenia, and the foot showing significant osteopenia. This means the bones are becoming porous – from chemo and lack of use – and he is at high risk for osteoporosis. Bone can sometimes regenerate up until the age of 20, and the only thing we can do is encourage him in his physio and rehabilitation as well as take low dose vitamin D and calcium. Certain high doses of vitamins actually can feed osteosarcoma cells so it’s with caution he will take supplements.

PET scan – as far as the techs could tell, the PET scan is clear, with an area in the colon lighting up – but this is likely due to the gut infection he was currently fighting at the time of the scan.

CT scan – this scan is where some of the hesitant celebration enters in. Jacobs lungs remain clear, which is awesome news as osteosarcoma typically spreads to the lungs as a secondary location. However, there is a new area of concern noted on Jacobs collarbone. The easiest way to explain it is that it looks like there is a bite mark out of the left clavicle, and this is a change from his other CT scans. While the doctors are uncertain at this time what exactly this means, they also cannot rule out that it is not metastatic disease either and will need close monitoring. The reassuring news is the PET scan did not light up in this area. However, Jacob now has to go for scans of his lungs and collarbone every 6 weeks, as opposed to every 3 months -which is the standard protocol.

The reality of Osteosarcoma is harsh – the other reason our celebrating is subdued. The presentation Jacob had initially with the skip lesion ( metastasis in his bone) is not “typical” and is only seen in 1-5% of cases. The fact that his cancer had spread to another area in his leg raises the chance of relapse significantly, and the statistics are beyond unsettling. Bone mets are the “worst possible presentation.”

Yet…..as Hebrews 6 reminds us – “we who have found safety with Him are greatly encouraged to hold firmly to the hope placed before us. We have this hope as an anchor for our lives. It is safe and sure, and goes through the curtain of the heavenly temple into the inner sanctuary. On our behalf Jesus has gone in there before us and has become a high priest forever.”

Your continued prayers are coveted, as Jacob is rehabilitated, and that we can continue to hear the words “no evidence of disease.”

We go forward in hope, and celebrate we will…..

Chemo is finished!!….so now what?

As many of you have probably heard, chemo is finished. The doctors have determined that Jacobs body is too worn out, that any more chemo would only be damaging and toxic to him, specifically to his kidneys. This past week, Jacob was admitted to Abbotsford Hospital after developing a few concerning symptoms. These progressed through the night and into the next day which got us an ambulance ride to Childrens Hospital. After many tests, an infection was found and he was started on antibiotics, which quickly started helping him.

Jacob was supposed to start chemo again tomorrow, round 18, the final round, which we were gearing up for mentally. However, our oncologist had a meeting with us last Thursday to inform us that after much discussion, had come to the conclusion that Jacobs body cannot take any more chemo. This discussion had come up after Round 15 already, as we started noticing a decline in Jacobs kidney function. We decided together to press on, taking it one round at a time and checking his kidneys after each one. My concern then that I expressed with not finishing chemo was that it Jacob ever relapsed, would I struggle with the fact that he did not complete every round. Would I be able to forgive myself for not pushing harder to get every last drop possible in him to kill the cancer. And although chemo has come to an end one round early, we trust the doctors and their decision. Jacob has completed 17 rounds of intense, high dose chemo – more chemo than a young man should ever endure, with a leg amputation in the middle of it all. And endure he did, with courage, strength, bravery, and a quiet trust in God and full acceptance for Gods will in his life.

So now what? This is how we are left feeling. As quickly as we were thrust into the world of hospital stays, surgeries, chemotherapy, bloodwork and blood-counts, constant monitoring, daily support from hospital staff and families we had met on the unit – we are just as quickly walking away from it. Is the whirlwind we called chemo really over? Did we actually go through all of that? Is end of treatment really here? It’s a strange feeling to walk out those hospital doors – a mix of excitement, sadness, fear, hope, pride for Jacob and all he has accomplished – but overall, feeling lost.

From here, Jacob will have end of treatment scans and testing in the next couple weeks. PET scan, MRI, CT, X-Rays, heart, kidney, and hearing tests. A date will be booked for surgery to remove the port in his chest. After that, he will have scans every 3 months to monitor. This will most likely be one of the hardest parts for us. Waiting for the next scans. Dreading them, and hoping to never, ever hear the word relapse. Living in 3 month increments and desperately praying and hoping that the scans remain clear.

Rehab is in limbo for now as the physiotherapist at GF Strong who works with rotationplasty is off for awhile for a back injury. Once rehab starts we will again be spending much time away from the home. For now, we will be trying to find a new normal – because the reality is we cannot go “back” to our normal as it was before. We are all changed because of cancer.

With sincerity, thank you to each and every one of you who has taken time to pray for our son. For the support we received in various ways. The last 11 months have been much more bearable because of the prayers, love and support poured out on us. We are beyond thankful for all of it. God has held us up, and sustained Jacob more than we could have possibly imagined at the beginning of all of this. We ask for your continued prayers, as this road is not over.

I will end off sharing a letter I wrote to Jacob in the last hours while we were in the hospital together, hoping that it would be the very last best wishes email he would ever receive in the hospital as an inpatient fighting Osteosarcoma. It “sums up” the last 11 months in a few paragraphs, and our hopes for Jacob in the future.

My dearest Jacob, a brave fighter and warrior.

You did it Jacob. You finished 17 rounds of intense and heavy chemo. When we started all this, it looked unbearable. Yet, by Gods Grace, and your strength and determination and acceptance, it has been bearable. Every step, I have been so proud of you. Your brave and contagious smile that has touched people in all parts of the world. Your determination to never give up. The remarkable way you have never once, not a single time, complained and felt sorry for yourself. You are a true champion, and with your quiet faith and courage have inspired so many others. God is mightily at work in you. While we won’t understand why this had to happen to you, it is not in vain because you have reached so many through it, and shared Gods love in it all.

I have been honoured to spend every single night with you in the hospital. We didn’t know it would be so many nights, almost 200 nights away from our home…but with your amazing attitude you helped me Jacob, to stay positive and cheerful and accepting as well. We have been a great team together, and I will continue to help you and be there for you every step of the way. I look forward to helping you with rehabilitation and learning how to walk and run and play again. And you WILL do all of those things!!! Together we will process and work through the new road ahead, though at times there will be anxiety and stress. Let’s continue to walk as we have, with courage and faith over fear.

There is nothing that I wouldn’t do for you Jacob and you deserve all the happiness and love that we can give you. You should be proud of yourself. It is a very rare person who can go through what you all have in the last 11 months and do it with the attitude that you have.

I love you, more than you can possibly understand. I am proud to call you my son. I am amazed by you. And I have learned from you. Keep trusting God Jacob. Keep trusting His plan and will for your life. Keep walking this road the way you have – persevering in the hard times, but shining through it.

I look forward to celebrating all the new milestones that are in store for you. And I will continue to pray that there will never be another bag of chemo in your future. Never the word relapse. Always the words No Evidence of disease and I eagerly await the day when we hit the 5 year mark and can say you are cancer free.

With all my love, your mamma bear 💜

6 months post amputation

I’ve said before in the blog that time is a funny thing. It drags on at the same time as it quickly slips past. Jacobs leg amputation was 6 months ago now. It feels like forever ago, and yet seems as if it was only yesterday. Reflecting on the surgery day and the weeks that followed brings a lot of pain. Recalling the fear and anguish in the moments before Jacob was taken into surgery rips at my heart. Remembering the endless 9 hours that Jacob was in the OR, sitting in the waiting room, wanting so desperately to hear any update, needing to know he made it through, while trying to also distract ourselves from what was actually taking place on that surgery table to our sweet boy. I ache deeply when I think of what cancer has taken from Jacob. The photos of his amputation will be forever etched in my brain, reminding me how vicious and destructive osteosarcoma is.

But, there’s also much happiness and much to be thankful for. Jacob has come so far. Endured so much. And has done so with a remarkable amount of courage and faith. We are thankful every single day that he is alive. We see clearly Gods hand in all of this. For Jacob, our family, but also for others around us.

We were told Jacobs wounds would likely not heal until chemo was done. We were told that the bones would not graft until chemo was finished. To expect him to be unable to walk on his leg for up to a year bearing full weight. But 6 months post amputation, his wounds are completely healed, and the femur is 80% grafted to the tibia! We received the news that Jacob can already start bearing full weight on the leg. His only limitation will be that for 3 months he will have his knee joints locked, giving him a “peg leg”, but after that he will be allowed to do anything he can set his mind and his body to!

We are currently in the middle of round 17, with one round of chemo remaining before Jacob has fully completed the first line osteosarcoma protocol. While this is exciting, it comes with a mix of emotions which I’ll touch on in another post.

Next week will mark the beginning of the road at GF Strong for rehabilitation. Jacobs prosthetic leg should be fully finished and ready to claim as his own next week as well. The next leg he will get made will be a water leg, to wear in pools and while in the shower. The War Amps, an absolutely incredible foundation, covers the cost of ALL of Jacobs prosthetics. His first prosthetic alone will run around $14-18k, and he will likely only be in this one for about a year before needing another made as he continues to grow.

I’ve said it before, and I’ll continue to say it. Thank you, thank you for your love and support and prayers. It is much needed, and much appreciated.

Never Once
Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walked alone.

First steps!!!

This past Wednesday, Jacob proudly put on his new prosthetic leg and walked for the first time since June 8 – over 9 months ago. To try put into words how amazing this moment was is impossible to describe, but it was by far the happiest moment since Jacobs cancer diagnosis. Jacob walked up and down the parallel bars several times, after being told he would likely only be able to handle a couple steps.

The determination and strength this boy displays all the time is truly remarkable. I was absolutely bursting with pride and happiness watching him be able to take his first steps. When I started this blog around Jacobs diagnosis, I called it “Every Step” – not knowing at the time how significant the name would actually be for Jacobs journey. When we went to the doctor back in early June over the concern of the mass in jacobs leg, en route for the initial X-ray of Jacobs femur I took his hand and held it as we were driving. I said to Jacob ” every step Jacob – every single step, no matter what happens, no matter what this means, or what we may find out – I will be with you, every step.”

Looking back on the last 9 months, and reflecting on those initial words to Jacob having a deep gut feeling that something was terribly wrong, watching as he lost any ability to use his leg, going through the amputation and recovery, all the harsh chemo, dealing with Evan and Noah struggling mentally, and now watching Jacob take his first steps again with 2 legs, I can see clearly how we’ve been carried every step. Our gracious and caring and merciful Father has most definitely been holding and carrying our family as we walk this very trying road. The evidence of answered prayers and strength and peace and acceptance being provided for us through these prayers is so very apparent to us. Reflecting on what I said to Jacob in the van on the way to the X-ray, I can confidently say I have done what I promised him so far. I have been with Jacob for every single day in the hospital, every physio, every blood test, every clinic appointment, while Ray continues to manage the farm and the 3 younger boys. There have been countless people helping us walk this road, helping us every step as well. Meals and childcare, visits, house cleaning, caring for pets, watching the barns, providing much needed coffee….. I could go on, but the point is that Every Step, every single step there has been people and things in place to help carry this burden with us, which we are thankful for daily.

Round 15 is finished, and went fairly typically for Jacob receiving methotrexate. Round 16 should begin next Thursday if his kidneys are doing okay. Tuesday Jacob has physio and an appointment at the prosthetist – he will be able to use his leg a second time and hopefully be allowed to take it to the hospital for his physio session. Wednesday is a full day of kidney testing, and if all looks okay then chemo can begin the following day.

Currently, we are attending the War Amps Conference at the Sheraton Airport hotel for the next 3 days. The first session begins shortly, so I’ll leave it at this for now.

Round 14 and the Media

Jacob has now completed round 14. Four left to go, which should hopefully be completed by the end of April. Chemo was delayed again because Jacobs counts took an extra 9 days to come in, but overall he is doing well. The chemo kicks the crap out of him over and over, but somehow he manages to come out of the round showing his beautiful big smile. This last round was no exception. The methotrexate is so tough on his kidneys, and the allergic reactions persist until the last bit has cleared from his system. Jacob slept for the first 4 days straight, stops eating and drinking and communicating, and developed mouth sores almost as soon as the chemo begins to drip in his body. This round took 8 days to clear… he’s a turtle in his clearing skills, but we remain patient as he’s hyper hydrated and pumped full of rescue meds every 3 hours until his body can get rid of it. The reason he is taking much longer than the average kid to clear the MTX is because his kidneys continue to have a hard time processing the drugs. This does worry us for his kidney health down the road, as they get injured over and over, but for now we have no choice but to focus on today, on his health now and fighting this beast….and “worry” about the future another day. He is under close observation, however, and at any point the doctors could decide now to discontinue treatment for the sake of his kidneys.

Leaving the home only becomes more difficult with time. We are in month 9 now, and 165 nights spent in hospital. This is weighing very heavily on the kids, especially Evan and Noah. There is no “getting used to it” for them. They want normal, they want things back to the way they were. Noah has expressed this several different ways recently, saying he wants to move back to the old house – back when life was better, back when Jacob didn’t lose his leg. It pains me to see his small young brain having to process such huge things, and I know once the chemo portion of this journey is over, there will be many things to work through and start processing with the boys.

The prosthetic leg is well under way, and we hope to have a working first model leg for Jacob to trial as soon as after the next round of chemo! He may actually be able to take a couple steps, which would be his first time “walking” since June! The folks at Barber Prosthetics are so lovely to work with, and you can tell they care about Jacobs well being.

Jacob was recently referred to GF Strong for rehab. We do not know much yet about how that end of things will look, but we should have an initial consult soon to learn more.

As some of you have seen, Jacobs story has been getting a fair amount of attention from media in the last week. I will copy a post I put on my social media so I don’t have to rewrite it.

In the last week, Jacobs story has been run by various large news organizations internationally. While we are thankful for a platform to spread some awareness about rotationplasty in order to help people become more informed about why his leg and foot are backwards, increase awareness about the lack of funding worldwide for childhood cancers, and hopefully inspire and encourage others in their own struggles, I am discouraged by the fact that the mention of “God” or “faith” or “prayers” keeps getting cut out from the interviews. Caters News, the original reporter on Jacob, allowed it to be added in the story that Jacob “trusts Gods plan for his life”. The others news agencies who bought and shared the story have taken that line out. People magazine allowed the word “faith” and “church community” under my request that it be in there, but took out the word “God”. There has been no pushing or an agenda or anything religious, apart from wanting people to know that Jacob and our entire family is not doing this in our own strength, not with just a positive attitude or good vibes from those around us. Next week we have some interviews with the UK Press, and I will again try get them to at least mention it, as it’s a huge part of Jacobs “story”. It’s incredibly sad to live in a world where “God” becomes a taboo thing to even mention.

Amazingly enough, within an hour of posting this, I was contacted by a person who works for some of the larger UK press organizations (BBC, Telegraph, Guardian) saying she was willing to work with me and guarantee to get better press coverage in the UK than the USA had given regarding our faith in God.

Here are some links to the recent articles and interviews

https://people.com/health/teen-rare-bone-cancer-rotationplasty/

https://www.foxnews.com/health/teens-foot-attached-backward-to-form-new-knee-after-cancer-surgery

https://www.storytrender.com/87130/brave-teen-who-lost-his-leg-due-to-deadly-bone-cancer-shows-off-new-knee-that-was-formed-from-his-foot/

For now, we have a couple days at home before we head back for the next round already come Monday. That will be followed by a 10 day “break” however most of those days are already filled with appointments in Vancouver. March 15-17 Ray, Jacob, and I are attending a Champs ( Children’s version of War Amps) conference. Jacob will get to meet other amputees, as well as we will all attend classes to learn more about living with an amputation and a prosthetic.

Again, many thanks for the continued prayer and support in various ways. Whether the media will share it or not, we are held up by an Amazing Father who gives us peace beyond all understanding on this impossibly difficult road we are traveling.