Every Step – Jacob’s fight against osteosarcoma

Recovery is still going fairly well. Jacob has made some huge strides in the last week. He has gone from just barely able to move without intense pain to being able to get up on his own! Last Wednesday he got into a wheelchair for the first time since surgery. On Thursday he stood up and walked 9 steps on the parallel bars. Friday he straightened his leg and walked with a walker. Saturday and Sunday he worked on transferring himself out of bed and into the wheelchair or the walker by himself and today he used his crutches briefly. We are so thankful for the positive progression that is happening.

I am also extremely thankful for his determined spirit and acceptance of what’s happened to his body. Jacob has still never complained once – not through the pain, not because he lost half his leg, not because his leg is backwards and he may not walk for another year, not because chemo is starting up next week again, not because he’s missing out on his first year of high school. This in turn also helps me to stay positive and accepting as well. He inspires me. This by no means makes any of this easy. The days have been long and difficult. Seeing Jacob in so much pain and crying for half an hour straight in my arms hurts so badly. I hate what is happening to him and to our family. The time apart has been especially hard on Evan. Since the first day of summer Jacob and I have spent 63 nights in the hospital. Noah and Kaleb are adapting well, but Evan is struggling to accept that his mom and big bro are away so much. This hospital stay alone looks like it will be about a month long before we can go home for a few nights.

We still have fun when we can, and are constantly pranking our nurses and physiotherapists, doing the best we can to keep it light and humorous.

Jacob is still being fed via the feeding tube, and it looks like this may be in for some time. He is eating small amounts and is off hydration now, but he is only consuming about 1/8 of the calories he needs. We were able to get him onto a scale today, and he has lost another 12 pounds, but no one seems sure about how much the portion of leg removed actually weighed. The pathology report is not in yet so we are still waiting on if the surgery had clear margins and what the percentage of necrosis the tumors had. One area of his incision is still not closing up. It needs to create its own blood supply because a large area of tissue at his upper leg had to be covered with skin from his calf.

Again, thank you for all the prayers and messages of support. We feel carried, and the unexplainable peace and acceptance we have can only come from our Father.

“Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Phil 4:7

Recovery has been hard. Much harder than Jacob expected. And much harder than I expected. We were both thankful to move to Children’s Hospital after a week at VGH. The nurses and doctors were good at VGH, but there really is no comparison to the care given at Children’s. The atmosphere is considerably more pleasant here too, as well as the building. We joked it was like moving from a Motel 6 to a Hilton.

Over the last 9 days, Jacob has hardly eaten anything. A feeding tube has been put in through his nose. Yesterday was tough on him getting used to it, but he’s already adapting and feeling a bit better about it all. The feeding tube is something that has been “threatened” all through chemo by the nurses and myself to keep him motivated to maintain his weight, and he has worked so hard to not have to have it – but like I started by saying in the post – recovery has been hard.

Rehabilitation has been incredibly slow and at times excruciatingly painful. To move Jacob from the bed to a chair or commode and back can take over an hour. The first time he sat up in bed unassisted took 3 helpers and almost an hour to get him holding up his upper body by himself for a couple minutes. Today’s move to the chair using a slider board, myself holding his leg in a steady position and the physiotherapist helping went really well. Everyone felt so positive, but once we moved him back he experienced the worst pain yet so far – he cried for about 20 minutes as I held his leg up as steady as possible because any shift up or down hurts him so badly. This process will be long. Because Jacob’s remaining thigh is only 8 cm there is little left to power his leg to move. His body has to relearn how to use the calf muscle that has been attached instead of his thigh muscle. His brain also has a lot of relearning to do and new pathways to make. His brain thinks that the entire leg is still there because the nerve was left intact. Jacob often has itches “by his knee” that he cannot scratch because the knee is no longer there. So far there has been no phantom pain, only phantom itches, which we are very thankful for.

Jacob’s oral blood thinners were changed to twice a day injections for the next 3 months. This complicates chemo a bit more from the drop in platelets that happens from the chemo. Preventing a blood clot is the priority. Many people have asked how long it will be until we go home or until chemo starts again. For now we really have no idea. Recovery is going significantly slower in terms of mobility than we expected. The dressings were removed over the incisions yesterday and he has developed a large blood blister which will also slow healing and can add to complications. The hope will be to get Jacob on his foot next week sometime, but as of today he is unable to do anything more than sit. Jacob is very quiet as he is processing all of this, and has times of being very “down” but overall continues to maintain his good attitude. He has really appreciated the letters coming in, and even received one from someone in Egypt. Thank you again to everyone for your love, concern, care and prayers.

Fight on, Fighter

For King and Country

I was there on the day that you were changed

You were scared, unprepared for the heartbreak

Everything you knew faded out of view

Stole a piece of you

If I could, oh, I would be a hero

Be the one who would take all the arrows

Save you from the pain, carry all the weight

But I know that you’re brave

Fight on, fighter

Don’t let anyone steal your fire

Fight on, fighter

The Spirit is alive in you.

Stronger than you than you ever thought

I know you’re stronger

Braver than you were before

You know you’re braver

Oh, no, you don’t have to be afraid

Together we’ll face it

So don’t ever stop no matter what ’cause you’re gonna make it. 💛

It’s hard to believe that it’s already been 5 days since Jacobs rotationplasty. So much buildup towards it, and like I’ve written before, time keeps marching on. 5 days into healing. 5 days closer to walking. 5 days closer to being cancer free.

Jacob is still doing relatively well. The doctors are very pleased with the progress so far. Today his catheter and the leg drain were removed. These are both good steps. Now that he has been off his epidural for 24 hours, the blood thinners have been started. Jacob is still struggling with nausea, and today could not keep any food down. The doctor is switching the pain meds from oxycodone to hydromorphone to see if that helps the nausea settle. The pain continues to be managed well, and on the pain scale of 1-10, the highest he has hit is a 5, but averaging only 1-2 for most of the day and night.

The physiotherapist wanted Jacob to try to stand today, but he was unable to. He is too weak to hold his own body upright in just a sitting position and needs me sitting behind him to hold up his back. We tried together for about 10 minutes to stand him up with a walker but the pain was too intense and he couldn’t figure out how to move his body to get into a standing position. This is absolutely heart breaking to watch as he struggles. I can see the defeat and frustration in his eyes. It hurts so much to be unable to take the pain away. He knows the road ahead is long, and will require an immense amount of patience, and all I can do is hold him through it and encourage him.

Evan continues to struggle mentally with everything that is happening. He does really well when I am home and near him, but his little brain is the type that overthinks and worries constantly. I am continually thankful that Noah and Kaleb remain unaware of the reality and immensity of the situation. Noah and Kaleb thought that Jacob’s new leg was “pretty cool” and a “nice little leg.” They both only took a few seconds to look at his leg and then asked to watch TV. Totally unphased. If only we could all be so innocent…

We were really hoping to be moved to Children’s Hospital today but the transfer didn’t happen, so one more night on the ratty recliner listening to people moaning and puking and yelling. The atmosphere here is significantly different than at Children’s! It does feel a bit odd being the only child in the hospital. Jacob and I are starting to have a bit of fun with the quick expressions and flashes of surprise when new nurses or staff see his leg for the first time.

Today I found out that a friends son has only a couple weeks left to live. He was diagnosed only a few weeks after Jacob was and we have walked some of the road together. My heart is aching for them, it’s unfathomable – and it’s another reminder again that cancer sometimes is not beatable. That it does sometimes take over and not respond to treatment, sometimes relapses. And it reminds me again how much I despise cancer.

Hold your loved ones close, always. Tell your friends and family they matter to you. We don’t know when our time on earth is up.

Psalm 139 : 13-16

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.

“For God alone my soul waits in silence
For my hope is from Him
He only is my rock and my salvation;
My fortress and my defense, I will not be shaken or discouraged
On God my salvation and my glory rest;
He is my rock of strength, my refuge is in God
Trust in Him at all times, O people;
Pour out your heart before Him.
God is a refuge for us.” Psalm 62:5-8

As many of you know, Jacob has now had his rotationplasty amputation yesterday. The weeks leading up to the surgery were heavy. Nothing could shake the thoughts of what was coming. What held us up was the care and love of so many around us. Family and friends. Church community. School communities. Neighbours. Messages from people around the world that they are praying for Jacob and our family. Families we know through Children’s Hospital. The nurses and social workers. We have been carried in ways through God by each and every one of you. We are overwhelmed by the love shown. Thank you from all of us 💛

Yesterday was hard. Really hard. We were at VGH by 5:30 am. After some pre op details were completed, Jacob was ready to go to the OR by 7:30. We asked for a bit of time alone with him to pray and hold each other. This was extremely emotional. Jacob, Evan, and Ray were crying as they said goodbye to each other before I walked down with Jacob to the OR. For sanitary reasons I was not allowed to enter the OR but only go up to the doors with Jacob. When they said it was time to go in now, Jacob broke down sobbing. I begged them to let me in with him until he was sedated because I could not leave him the way he was. So afraid. So helpless. They finally decided to get the anesthesiologist to come into the hallway and partially sedate Jacob before he entered. Within a minute he had calmed down, so I hugged and kissed him, told him I loved him, and had to walk away. This is one of the hardest moments of my life. Everything in me wanted to turn back and stay with Jacob, to know what was happening that second, to hold his hand and tell him I loved him through all of it. I broke down as I walked back with a nurse escorting me back – she was also crying from the emotion of it all. And so started the long wait. Some friends and family came throughout the day to be with us. For 9 long, agonizing hours we waited with no updates at all from the OR room. The first half of the wait went well, but as each minute went by the 6 hour mark with no updates, it felt like too much to bear and we wanted to see Jacob so badly. Finally at 5:30 pm, the surgeon came into the waiting room. He assured us that all had gone well. He was happy with how everything had gone through the surgery. The plan was to leave 10 cm of Jacobs femur, but it ended up being only 8 cm left at the top. The incision runs around the upper leg just under his bum cheek and the doctor thinks that plastic surgery will be needed down the road. Jacob’s hemoglobin dropped from 125 to 80 during the surgery, and he continues to lose blood now through a drain in his leg. He will likely need blood transfusions in the coming days. Jacob stayed in recovery until 10:30 pm as they tried to manage his pain. He is on an epidural that puts hydromorphone continuously into his spine to numb his legs. Unfortunately most of the numbing is in his right leg, but it’s his left leg that had the amputation. The pain is under control at the moment, as long as he doesn’t move. He has pretty bad nausea from the pain meds and anaesthetic. Despite all this, he is still in relatively good spirits. Seeing him in recovery was so amazing, and a bit scary at the same time. He smiled as soon as he saw us and proudly told us he was already wiggling his toes. After hugging him, we looked at his “new” leg. As much as we prepped and processed mentally for this, there really is no way to prepare to see your child after his leg has been amputated, what was left brought up, turned around, and reattached. There are no words that I can think of to explain how it felt. He is so brave and so strong though, and continues to inspire us with his strength and courage.

Once Jacob was brought up to the orthopaedic trauma unit, we got him settled, reassessed and we tried to get some sleep. The road ahead will be difficult. There will be lots of pain as the incision heals and his body works to mend the muscles, bones, ligaments, veins and arteries that were reattached. Jacob’s main artery was cut and sewn back together, so he will likely be on blood thinners for the rest of his life because of this. He is resting comfortably right now, and we may try get him to sit up today for a few seconds.

The good news is that the tumors in his femur and his knee are now gone. A glimmer of hope in this really difficult time. We now need to wait about 2 weeks to hear back from pathology about the necrosis (death) percentage of the tumor. We are praying the percentage is high, as this is an indication of how well the chemo is working. We pray and hope so badly that all the cancer is now removed from Jacob. That whatever cells in his body from the spread through his bloodstream have been killed by the chemo, and will continue to be killed off by the 5-6 months left of chemo yet to go.

The plan going forward is to stay at VGH for the next 4-5 days, and then be transferred back to Children’s, which is where we really want to be. Once his incision is healed, chemo will resume. This could take 2-4 weeks if all goes well. Pray for his healing, that no infection sets in, that his white blood cells continue to rise, and that no complications arise through the next weeks as he heals.

“He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”…He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.  You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.  A thousand may fall at your side, ten thousand at your right hand, but it will not come near you…For he will command his angels concerning you, to guard you in all your ways…“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him…” Psalm 91:1-16

4 more nights… this is what I just overheard Jacob saying to his Dad. Wasn’t it only yesterday that we were still a month away from surgery? We are scared. All of us. Except Kaleb, who is blissfully unaware of what is really going on. And I’m thankful for that. Though we  don’t know how to fathom what is actually going to happen and what the recovery will be like, we have checked off some boxes with things we felt “should” be done prior to the amputation. Family pictures. Check. Family holiday. Check. Meeting other amputees. Check. Get together with close family and friends planned. Check.

As of Thursday, Jacob’s neutrophils were at 0 so he began G-CFS injections to artificially raise them. Tomorrow morning he will get bloodwork done to see if it’s worked. If not we head into Vancouver to start more injections. This is key to making his surgery happen on Thursday. We do not want any delays, as that could be very detrimental to his chemo schedule. Because his cancer is extremely aggressive, any week that goes by gives roaming cancer cells a chance to multiply.

I keep trying to picture the day – the pre op meetings. The prep for surgery and the talks with the nurses and surgeons beforehand. The agonizing wait before Jacob actually goes in. What do we say? Do we say goodbye to his leg? What will it be like wheeling Jacob into the OR room and kissing his forehead as they start the anaesthetic and watching his eyes roll back and close seconds later. How do I walk away from him then, knowing what’s about to happen, knowing that there’s high risk of complications, knowing that when I see him next he will not look the same.

There is no choice in any of this – the only other option without radical surgery and tumor removal is death – and that’s clearly not what we want. So we are okay with what’s happening. It hurts badly, and our hearts our broken for Jacob knowing the struggle and fight he has ahead still, knowing the physical challenges he will face for so long.

But, as of Thursday evening, Jacob will have no visible cancer or tumors left in his body. This is what drives us to to keep encouraging him, and ourselves. Though what he is going through is extremely difficult, and an amputation is something I would never have thought my child would be going through from cancer, we are remaining positive overall. Now it’s the hurry up and wait. Much like when we were waiting for chemo to begin after we found out he had cancer – you process, push through some of the emotions and then get to a point where you want and need action. What makes me sad though is that on top of the chemo and time spent away in the hospital, and feeling like we had just found our footing in a way – everything is going to be turned upside down – again.

We had a wonderful 4 days away in beautiful weather and got to see and do a lot of fun things. The mental break was needed for us all – and it certainly helped to recharge our brains again. The next few days will be busy with surgery prep, meeting with the vascular surgeon, and pre op appointments on Wednesday. Wednesday evening Ray, Jacob, and myself will be staying at Ronald Macdonald House. Thursday morning we will be at VGH at 6 am. The surgery will be 6-12 hours long. Continue to keep Jacob and our family in your prayers as we continue to prepare for surgery.

Ps 55

“Listen to my prayer, O God.

Do not ignore my cry for help!

listen and answer me,

for I am overwhelmed by my troubles……

My heart pounds in my chest.

The terror of death assaults me.

Fear and trembling overwhelm me,

and I can’t stop shaking.

Oh that I had wings like a dove;

then I would fly away and rest

I would fly far away

to the quiet of the wilderness

How quickly I would escape

far from this wild storm…..

But I will call on God,

and the LORD will rescue me.

Morning , noon, and night

I cry out in my distress,

and the LORD hears my voice.

He ransoms me and keeps me safe

from the battle waged against me….

Give your burdens to the LORD,

and he will take care of you.”

Like the psalmist David, we cry out to God, afraid and full of anxiety, but ultimately casting our burdens on Him and trusting Him to take care of Jacob and to carry us all through this dark road ahead.

Its been another busy couple of weeks.  Jacob received chemo and spent 6 days in the hospital – he was so very sick from this round.  With a lot of different medications he was able to get home and finish the recovery there.  Last Saturday Jacob, Evan and Noah, along with their cousin Dea, were asked to represent Children’s Hospital at a charity soccer game. The soccer game was played by actors, hockey players, Olympic medalists etc…Evan lucked out and got to walk on the pitch with Daniel Sedin, who tried to hold Evans hand…Evan hates to be touched and had to ask Mr. Sedin to please not touch his hand. 😂.  After the game, we all stayed for the White Caps game. Overall it was a fun evening for the boys, and for a good cause as well. Sunday we participated in the Abbotsford Terry Fox Run.  About 120 people came out to support Jacob on his team, and we raised $17,000. The event was emotionally overwhelming – the sea of yellow shirts for Jacob, the realization why we were there…this wasn’t just a “fun event” for a worthy cause…this was because our son has the same cancer Terry Fox had.  And just like Terry, Jacob is very soon facing amputation of his leg.  While we are very anxious for the surgery, we still have acceptance that this is what needs to happen if there is any hope of Jacob beating this.  Jacob remains calm and at peace with it as well.

Our niece Emily has been amazing for the family.  Its comforting knowing that no matter what happens or when we need to be gone, she will be there to watch the kids and help keep the house in order. This is a load off our backs and we are so thankful things worked out this way. Now for the tough news. On Monday Jacob had a clinic appointment at Children’s.  While we previously thought his latest scans were all fairly positive – we were not exactly given the whole story.  There was some miscommunication between the surgeon and the oncologist about who was going to go over the MRI results with us.  What no one told us was that the cancer has spread to Jacobs knee now.  This makes the cancer metastatic and in the cancer staging system, puts him in stage 4B.  I’ll add a staging chart, so I don’t have to spend too much time explaining.  This is not the news we expected nor wanted to hear, and along with processing the upcoming amputation, things are feeling pretty difficult.

While this is very concerning and discouraging news, we still place our trust in God and his plan and will for Jacob’s life.  We will not give up hope and we will fight the heck out of this beast inside him and, though so afraid of the amputation, look forward to the tumors being taken out.

Continue to keep us in your prayers – and our thanks again for the love and support shown in the various ways. 💛