Day 100 – but not the kind to be celebrated

Today marks 100 days and nights of being in hospital and away from the family since Jacobs diagnosis on the first day of summer. Away from everything I knew that was normal. Today also marks 60 days consecutively of being away since Jacobs amputation. Many people celebrate day 100 of something. 100 days clean of a bad habit. 100 days until a wedding day. “100 Day” for grade 1. This, however, is nothing to be celebrated. The time away from the family and in hospital has been much more than we anticipated. I miss normal. I miss my boys. I miss Ray. I miss my friends, my home, my pets, church, being involved in the kids schooling, helping on the farm, visiting and caring for other people. So much has been taken from us. While I can truly say we have maintained staying happy and positive through the last 6 months, today I don’t feel that. I feel numb. I feel worn out. Almost emotionless. I’ve built so many walls to protect myself from the pain of all the losses, and am only focussed on helping Jacob get better, helping him beat this ugly monster, helping him through all the horrible side effects. Today, day 100, I’m allowing myself to process some of the losses and some of the pain, and all I feel is sadness.

The last couple weeks have had many ups and downs. A huge highlight was the Canuck game last Monday night – the kick off game to Hockey Fights Cancer, where Jacob had the amazing opportunity to drop the ceremonial puck, wheelie style. It was overwhelming and incredible. The standing ovation for Jacob was so heart warming and I was bursting inside with pride for how strong and accepting and determined Jacob has been. We had 34 tickets in the Legends Suite, so many of our family and friends were able to share in the experience with us, as well as many friends, nurses, and doctors we know in the crowd. Our family was taken down to the locker room to meet the Canucks after the game. It truly was a remarkable night.

Jacob and I are living at Ronald MacDonald House in-between hospital stays for chemo because his wound is still open in 3 areas, his immune system is not functioning, and we have daily appointments at the hospital. There are many people we’ve come to love at the house. I’ve been called “the most social person there, by far” by many of the staff and residents. While there is joy in this, it also comes with sadness. Dear friends of ours learned this past week that their daughters cancer has relapsed, and is ” treatable, but not cure-able”. There is a heavy weight on my heart, for them, and for the fear of the unknown with Jacob, knowing this cancer is so aggressive and also has a high relapse rate.

We are currently in hospital now, 3 days post chemo. Many of you have read already that Jacob had toxic levels of the chemo in his bloodstream. The chemo was too much for his kidneys, and his kidneys stopped processing it, leading to a large build up in his blood stream and cells all over his body. A rescue med was flown in and given early this morning as an antidote to methotrexate toxicity, which thankfully came quickly because Jacob was in a life threatening situation. This medication rapidly binds to the chemo and expels it from the blood stream. We are working now to get the rest of his body cleared with high doses of another rescue medication, and hyper hydration. Jacobs kidneys have taken a hit, levels of creatinine are too high – indicating they’ve sustained damage- and his blood pressure is way too high. The hope is that the rescue meds were given soon enough so that there will be a reversal of the organ damage. Jacob is supposed to receive this chemo again next Monday, but doctors are working to figure out a plan as his kidneys won’t be able to tolerate the next dose by Monday. For now, we sit and wait for all the chemo to be cleared from Jacobs system, and wait to see if kidney function returns to normal.

Thank you to each one of you who has carried us in some way. For your love ,your texts, your visits, meals for the family at home…and above all, your prayers, because there are many days when the words just are not there….thank you, thank you, thank you. 💜

Romans 8:26-28  “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.  And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Worn. Tenth Avenue North

I’m tired
I’m worn
My heart is heavy
From the work it takes to keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn
I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
And my prayers are wearing thin
I’m worn even before the day begins
I’m worn I’ve lost my will to fight
I’m worn so heaven so come and flood my eyes

There’s nothing lucky about cancer

It’s been 48 days since Jacob’s amputation. Initially we were told that our stay for this would be about 10 days. Mentally I was prepping for closer to a month. I thought that I was tagging on quite a few days extra so there would be no room for disappointment when it maybe turned into 20 days. While we are disappointed that this has now reached almost 50 days with no date yet of going home, Jacob and I willingly accept it as it comes, knowing he is where he needs to be.

After a rough round of chemo that kept him in hospital for 9 days receiving every anti nausea possible, he is now over most of the nausea. Apart from being very tired and having a poor appetite, he feels good. However, he has no immune system at all right now. His counts since chemo have bottomed out, and because he still has an open wound, the risk of him getting an infection and going into septic shock is extremely high. This is the only reason at this point that we are not allowed to go home. The doctors consider Abbotsford too far away should Jacob get an infection or fever. Jacob’s platelets recently dropped to a critically low level as well. This is the first time in his chemo rounds that his platelets have dropped into a dangerous level, and this gives us indication that his body is getting exhausted now trying to constantly rebuild the bone marrow after each chemo cycle. Last week Jacob received a platelet transfusion. Although he couldn’t finish the treatment because of an allergic reaction, ( in typical Jacob fashion!) it was enough to boost him, and we are thankful the medication worked quickly to stop the reaction. Because he is on daily blood thinner injections, low platelets are more concerning because he is already compromised with his blood clotting abilities. A simple nose bleed could turn really bad really quickly for Jacob.

Jacob is back to physio a few times a week, as well as bloodwork, bandage changes and wound checks, which mean daily appointments at the hospital. Staying at Ronald Macdonald House is convenient for that reason. A 5 minute walk to the hospital instead hours in the vehicle is a bonus. If we have to be here, we will consider that a win. ☺️ Jacob has lost almost all of his muscle mass in his left leg. He left bum muscle is completely atrophied as well. Physio includes trying to engage the muscles, and any contraction of the muscle he can make is celebrated, although I think Jacob’s getting tired of his mom cheering whenever he manages to move his bum a bit! He has a long, long road ahead, but he also has the drive and the determination. We are not afraid of the road to getting Jacob into a prosthetic and walking again.

The final pathology report from Jacob’s leg is still not completed. While what we are seeing so far looks positive, we are still waiting on results of the tumor at the top of his femur and the last bone margins, and the wait is getting a bit difficult now as we wonder why it’s taking so long.

Tonight, Jacob and our family are attending the Canucks game, and Jacob will be dropping the ceremonial puck. The game tonight is the kick off game for Hockey Fights Cancer, which is a month long fundraiser and awareness campaign for childhood cancer with the NHL. We’ve heard some comments that we are “so lucky”. I want to take a moment to clarify that although this will be a really neat experience, it is anything but luck. Cancer isn’t lucky, and neither is losing half of your leg. Jacob is fighting a life threatening illness, one that is very tough to beat. This will be a very emotional night for us. What this has done, however, is given Jacob something to look forward to and work towards during his recovery. We were asked about one week after his amputation if Jacob would be interested in doing the puck drop, and while it seemed impossible to picture at the time, it did give him motivation to work through his pain and mobility. What it will also do is give exposure and raise awareness about Jacob’s rotationplasty, as well as childhood cancer. We are very aware of the looks and stares and comments that happen when people see Jacob with is backwards foot. While some have been incredibly rude, we expect the looks and knew going into this that people would turn their heads wondering how it’s even possible. The exposure the Canuck game will give is huge, and for that we are thankful.

But not lucky.

In the meantime, as we wait for either Jacob’s immune system to kick into gear, or until his next round of chemo next Monday, we spend our time hanging around at RMH, doing activities and spending time with other families here, who have just become an extension of our own family. RMH is an incredible place, our home away from home right now.

Thank you for the continued prayers for our family, specifically for Jacob and that no infection sets in, for wound healing, and for our family back home who continue daily “normal” life without us there.

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Is 40:31

Category 5 Hurricane

In a recent conversation with someone, I was asked how I can cope “so well” through all of this, how am I not breaking and falling apart etc. As I tried to think of ways to describe how, a major storm came to mind. You know it’s coming, there’s warnings. So you batten down the hatches. I feel like that’s what I’ve done for myself mentally. I’ve boarded up the windows and doors and am prepared for the torrential rain and devastating winds that just keep hammering. All my focus is on survival. No outside influences are able to change that focus. Every ounce of energy in me goes to making sure this storm doesn’t destroy us, doesn’t break us, doing everything possible to protect Jacob and get him through this seemingly endless cyclone of events.

Jacob is one month post amputation now. Chemo started again on Thursday. This cycle has been especially hard after everything Jacob has just been through. It rips me apart inside saying to him that only weeks after losing his leg, that this is a good thing for him. After the last 2 weeks of working him so hard to gain strength and mobility back, watching him smile and laugh and exert all his energy with so much determination despite the pain – to filling his body with toxins only to weaken him to the point of being unable to stand, unable to eat and drink, and most of the time to even speak, is really, really tough. Jacob continues to have no appetite since the surgery. My guess is that the feeding tube will remain for a good length of time now. It does make giving some of his medications much easier and takes a bit of stress off of him knowing he doesn’t have to put any energy into trying to get food down. Even water has become unappealing to him. Within hours of the chemo beginning, mouth sores began which makes eating and drinking even more challenging. As always, we can only take this hour by hour, minute by minute.

On Wednesday we got to see the X-ray of Jacob’s leg. He has 12 screws along a plate that runs the entire length of the leg now. The fibula was purposely broken at the top to fit. The top of his femur and the tibia are held together by the hardware. The bones will not fuse until after chemo is done. Until then, Jacob can bear no weight on his leg in any way. We are mentally prepping for up to a year before healing takes place and we can start the heavy rehabilitation into a prosthetic leg. While the X-ray looks pretty crazy, it is so so amazing to see his leg with no massive, ugly tumour. I don’t see screws and plates, I don’t see a “little backwards leg”. I see a cancer free leg. An opportunity to live. To run and jump and play sports. To chase his brothers and shoot hoops and be the farm kid he wants to be so badly. I see a beautiful leg.Jacob is finished now with the chemo drug Cisplatin. He had his last 2 bags put in and is now at his “lifetime dose”. This is partly scary and partly really great. Scary because we know it kills the cancer cells very well and he can never use it again if needed. Really great because it is the hardest drug given in this protocol. He is currently on 17 different medications, most of which help him through the side effects of the Cisplatin. It’s been 31 days now since Jacob and I have been home. It’s hard to say when home will happen. We may end up back at Ronald Macdonald House after he is discharged from the hospital because he still cannot use a toilet, and we are unsure if he’s able to sit in a vehicle yet to get him home. The incision around his upper leg is still a concern as well so that needs close monitoring.

Evan spent a week with Jacob and I at RMH which was so so good for him. And for me. He struggles the most by far. It was such a joy to not hear him crying on the phone daily, or saying goodbye to him and watching him sob as Ray drives away from the hospital.

Thank you for the continued prayers, which we know are being prayed all over the world for Jacob, as we ride out the category 5 storm we are in.

Praise You In This Storm

Casting Crowns

I was sure by now, God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it’s still raining
As the thunder rolls
I barely hear your whisper through the rain
I’m with you
And as your mercy falls
I raise my hands and praise
The God who gives and takes away
And I’ll praise you in this storm
And I will lift my hands
That you are who you are
No matter where I am
And every tear I’ve cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise you in this storm
I remember when I stumbled in the wind
You heard my cry you raised me up again
My strength is almost gone how can I carry on
If I can’t find you
As the thunder rolls
I barely hear you whisper through the rain
I’m with you
And as your mercy falls
I raise my hands and praise
The God who gives and takes away
And I’ll praise you in this storm
And I will lift my hands
That you are who you are
No matter where I am
And every tear I’ve cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise you in this storm

18 days post amputation

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

9 days post amputation

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. 💛

5 days post amputation

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

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 
My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.
Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

3 days post amputation

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