Every Step – Jacob’s fight against osteosarcoma

We are home after another 5 day stay at the hospital! Jacob’s neutrophils went up ever so slightly (0.04) getting him to 0.15.  This is still severely neutropenic so we are reaaaaallllly hoping he doesn’t get another fever or a repeat of the last 5 days will happen.  His hemoglobin and platelets also went up, so we are celebrating these small victories. Jacob hasn’t managed to make his own receding hair line quite yet, but he will need his head shaved soon. Hair is getting everywhere.  In his bed, his clothes, his eyes and mouth, his food….he has to be ready though and I want it to be his decision when it happens.

We cancelled our stay in Vancouver this week. After this hospital stay and only being home 2 days out of the last 19, we just want to be at home. There are things that need doing, and Jacob gets tired so quickly so we want him where it is the comfiest without any expectation of needing to head out. Something as simple as a dinner out could be too much for him.

Thank you again for the prayers and the help received so far. We could not travel this road without your love and support.

So much has happened since Jacob’s graduation 18 days ago.  Official diagnosis. Port surgery. Chemo began. The horrible side effects hit full on and furiously. Jacob’s first ambulance ride for fever. In the last 17 days, 15 have been in the hospital and 2 have been at home. Graduation feels like a lifetime ago now.

Today was a mostly good day even though we didn’t get the news we wanted. Jacob’s counts have dropped and we won’t be able to leave now until they see them rising.  There is no sign of infection in his blood cultures but because his neutrophils are at 0.1, he’s at high risk of picking up infection and getting more fevers which would only send us back. His hemoglobin is at 8, so he is exhausted. The doctor thinks that blood transfusions next week are likely.

We did book 3 nights in Vancouver for a “holiday” but with Jacob being so tired and still not knowing when we will be dishcharged, I can’t see it happening. Jacob can handle about half an hour out of bed before he gets exhausted and pale and needs to lay down again.  His hair loss has really started now and chunks of hair are coming out at a time now.  As I write this he his busy pulling it out try to give himself a receding hair line. 😂 Noah and Kaleb each took a turn pulling some out as well.

Ray and the three boys visited us for the afternoon and evening.  We played basketball on the patio and ordered pizza for dinner, then went back to the room and watched a movie together. It is so good to be together.  Evan is having a hard time with this all, missing Jacob and myself badly. It hurts so much to see. It’s tough seeing everyone leaving on their summer holidays knowing our kids will have a very different summer. We look forward to summer from the day school begins in September.  We thrive in summer as a family.  Camping. Canoeing. Hiking. Lake days. Lake evenings. River walks. Bike rides. Campfires.  Late nights laying on the trampoline looking at the stars. Working as a family in the hop fields. Lazy mornings.  It is definitely the best time of our year.  I hope that somewhere in the next couple months we can give the kids some fun summer memories despite this all.

We discovered a toddler basketball net and a ball so when Jacob is rested we head to the patio to play. It’s been a lot of fun and even though it’s a little kid net, it’s been so good for Jacob to be able to shoot some hoops again. Only a few months ago he was winning All Star Awards at basketball tournaments.  He was so excited to get to high school and try out for the basketball team. It’s so hard to see him like this now. He needs help with everything, from getting out of bed to going to the bathroom, showering, getting food, getting out onto the patio etc.  Jacob was our biggest helper. On the farm. In the house. With the other kids. So athletic. So active. It’s still so surreal to me how much that has all changed. There has been so much to process in such a short time period. Jacob still has never complained once. Not one moment of feeling sorry for himself. He really does amaze me. He is a gift from God in our lives and we are going to fight this so hard to win.

Psalm 34:17-19

I was really hoping to not have to post a blog until Jacob’s next week of chemo, but as we are learning, very quickly, we cannot plan much anymore. It’s cliche to say take it a day at a time but that is the only thing we can do and it helps to cope through it all.  Looking too far into the future is terrifying, and looking even just ahead to tomorrow or a holiday in Vancouver a few days away can mean disappointment and let down.  So it is indeed, one day at a time.  Jacob had a high fever Wednesday night, so Ray and I took him to Abbotsford ER where they get bloodwork going to check counts and to start blood cultures to look for infection.  His neutrophils came back at 0.2, so because it was so low they transferred us by ambulance to Children’s Hospital. When you are receiving high dose chemotherapy they don’t take any fever lightly.  We will be admitted for 3 days at least so Jacob can receive antibiotics and once the blood cultures come in, they can decide what to do from there. If an infection is present, we stay, and if nothing shows we can probably go home provided his neutrophils have come up to at least 0.5.

The 2 days we had at home together was really nice. Jacob felt decent overall, just very tired.  We recently got a hot tub so we enjoyed some family time in there.  Yesterday Jacob spent the day building a gaming computer with a friend. It was so good to see him busy with something other than medical related things and feeling decent enough to engage and learn something new.  It is hard though seeing the younger boys for such a short time before having to leave them again.  We know they are in good hands, but I want them to be in my hands.

A few verses from a devotional I read with Jacob last night.

Isaiah 40:28-31

Have you not heard?
    Have you not understood?
The Lord is the everlasting God,
    the Creator of all the earth.
He never grows weak or weary.
    No one can measure the depths of his understanding.
²⁹ He gives power to the weak
    and strength to the powerless.
³⁰ Even youths will become weak and tired,
    and young men will fall in exhaustion.
³¹ But those who trust in the Lord will find new strength.
    They will soar high on wings like eagles.
They will run and not grow weary.
    They will walk and not faint. 

We continue to put our hope and trust in God. Nowhere in the Bible does it say to bear your burdens alone, but it does tell us that God never tires, never gets weak. Even though we grow weak and weary this text reminds us that the Creator of the Universe will carry us, and give us strength and power, even now during these very trying and scary days.  

 

 

 

 

After 11 days in hospital with Jacob doing the above for most of it, we are finally allowed home!! This took 5 attempts, and I actually had some anxiety leaving the hospital because I feel safe there with all the changes going on with Jacob’s health, but it sure does feel great to be home! Jacob is in good spirits, (apart from a quick detour on the way home to use the barf bags I’ve taken from airplanes) and he is so happy to be back home, too. Thank you for the many prayers that went up on his behalf. 💙

Jacob and I got to watch the Canada Day fireworks from the hospital rooftop patio last night. These little things help the hospital time pass and helps to make it feel a little bit more normal.  Jacob’s blood counts are dropping quickly. He is getting nosebleeds now because his platelets are low and he is exhausted because his hemoglobin is low as well.  His neutrophils ( the infection fighters) will bottom out in the next day or 2 so we won’t be heading to any crowded places with him!

We have a follow up appointment Thursday, and there will be a couple more the week after for possible blood and platelet transfusions.  What we are hoping for is no hospital stays between now and his next chemo, which begins July 16.  Because we had to cancel our camping trips this summer to keep Jacob close to the hospital, we are hoping to stay in Vancouver as a family next week and have some uninterrupted family time together before the next few weeks away for chemo. So, with that being said, if things stay uneventful, I’ll probably not blog until the next chemo begins. 

A verse that has been shared with us by many people over the last few weeks… 

Still hanging out in the hospital! Some good moments and some less fun moments today.  Jacob is still unable to stand without getting very dizzy. His blood pressure keeps dropping too low. Tonight when he stood it dropped to 77/50. We won’t be discharged until this gets better. He started throwing up today too, which may seem surprising since you just saw a picture of him chowing down on a spicy chicken burger brought in by some friends tonight.  Jacob is in isolation now too as we wait for stool sample results to come in because they think he may have a virus.  If he does, I will end upon isolation along with him!  Which means I’ll need someone to bring me coffee during the day 😁.

We got to see Jacobs port for the first time today.  I now call him my skinny little alien child. 😆 Some of you may be wondering why Jacob never has a shirt on. My sis in law felt bad for my skinny alien child so she whipped up some “chemo port friendly shirts”. Hopefully these will help him stay a bit warmer and comfier while keeping easy access to his port and all come the tubes coming out.

Despite this all, Jacob and I are having some fun here. We laugh so much and overall he’s feeling decent as long as he doesn’t stand up! We enjoy many visits from friends and family. We make our nurses try droppies and giggle uncontrollably as they try to not spit them out. We laugh at the blue Powerade vomit that forces nurses to change his bedding and that he’s quite the sissy for not handling his first chemo very well. We managed to sneak a keyboard into the room even though he is in isolation and we weren’t allowed.  We ring the nurse bell just to get them to take pictures of us.

Not all the moments are laughable though. Tonight Jacob talked about the big surgery coming up in September. The tumor has to be removed. It’s the first time he’s really talked about it and asked if his leg will be amputated.  The reality is, we don’t know the answer to that question yet and we may not know until just before the surgery happens. There are only a couple options. Leg salvage surgery, where half of his femur would be replaced with a titanium rod and a new knee as well and maybe part of his tibia. Or amputation.

Please continue to keep us in your prayers.  The chemo is beating the crap out of Jacob and there’s so much to go through yet. Pray his skinny little alien body can handle it all and that we can continue on with all the treatments. Pray that he can get out of bed soon so we can be home for a bit with the rest of our family before the next round.

Well, Jacob is still admitted in hospital for lingering lousy side effects from the chemo. His nausea is mostly gone now and he is eating and drinking again, which we are so happy to see. However, the last couple days Jacob has been getting very dizzy when sitting in his wheelchair or trying to get up to use the bathroom. His blood pressure is quite low, so he is hooked back up to IV again. We can’t seem to get through a day without needing to be attached to the huge pole! But we will try again tomorrow for the 4th time! Every day I tug on Jacob’s hair, and today he lost some so the hair loss is beginning already. He says that he doesn’t care, it’ll grow back. He’s hoping it comes in blonde. Jacob is a very practical kid. I am bursting with pride at how well he is handling all of this. No set back yet has seemed to phase him and he is just accepting of it.  When I sit beside him, which is pretty much all day, I stroke his hair whenever I can. I think the hair loss may be harder on me than on him, because that will make him truly look like a “cancer kid”.  It will be obvious to everyone we meet.  Jacob has lost about 8% of his body weight already. He is so thin and so bony.  We met with the dietician recently and she said if he gets beyond 10% loss, then he will likely need a feeding tube.  We would really like to avoid this but sometimes it’s just not possible.  For now, I’ll be sneaking as much butter and cream into anything I can to fatten my skinny kiddo up a bit. 

Kaleb and Noah came for a visit yesterday with my inlaws.  They were visited by a clown and got invited to another patients 3rd birthday party.  I’m guessing they will be asking to visit us again! Children’s hospital is really amazing.  There are SO many things that go on behind the scenes and so many people trying to help in various ways to ease the journey just a little bit.

The 3 boys have been away from us now for 10 days.  It was difficult to watch them walk away down the hall. Knowing they don’t fully understand.  Knowing they have no idea that this will be going on for a long time. Knowing their summer won’t be a normal summer at all – all holiday plans cancelled and weeks where their brothers counts are too low to risk going out in public.  While I’m here with Jacob I focus on him and helping him through the lousy side effects so it’s “easy” for me to not think of my other kids during this. Seeing them is wonderful and needed, but brings heartache as well.

Many people have asked me why Jacob needs to stay for so long in the hospital for chemo. They bring up their uncle or aunt who had chemo, went in, got the bag of meds, went home the same day and even worked in between or felt pretty good!  I’ve had several discussions with the doctors on this. They have explained the the amount of chemotherapy that Jacob is receiving is much more potent and way higher doses than an adult would receive.  The amount that Jacob is specifically receiving would kill an adult.  There is high risk of damage to kidneys and his heart and his hearing. His body needs to be constantly flushed before and post chemo to save his kidneys  and sometimes these drugs are still too harsh and they need dialysis through it. They have told us to expect hospital stays in between for fever and other complications. They have told us that Jacob will need blood transfusions and platelet infusions. They have told us that Jacob will not attend any of grade 8. Osteosarcoma is very aggressive and they hit it as hard and as fast and as furious as they can. Jacob’s body will get weaker with each chemo session that happens. His bone marrow will become exhausted. He will become anemic.  And so many other things…. the list is long and so overwhelming and scary.

Jacob keeps expressing that he trusts God fully.  I will always encourage him in this, even when my own mind is resisting and struggling because of what is all happening.  Watching Jacob’s strength is absolutely incredible.  As lousy as this all is, I couldn’t be more proud to be at his side through this. We cannot change what is happening, but we can choose our attitudes and Jacob’s is a shining example so far of a positive attitude. Plus, he’s got that incredible smile!! I will end off with this text.

“But now, this is what the Lord says—
    he who created you, Jacob 
    he who formed you, Israel:
“Do not fear, for I have redeemed you;
    I have summoned you by name; you are mine.
² When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.
³ For I am the Lord your God,
    the Holy One of Israel, your Savior.”       Is 43:1-3

We truly do believe this. This road is going to be tough. It’s going to suck. And many other words that I could use that I should probably leave out of this blog! But we cling to these promises. As difficult as this is, this will not sweep us away, this will not burn us and destroy us. We know that God has been carrying us. And we again ask for your continued prayers. 🎗

Day 1 of chemo Jacob had said “ chemo is easy!”  How I wished and hoped and prayed it would stay easy but that was short lived. The last 3 days have been hard for Jacob. Nausea, no energy, cannot eat or drink. His big contagious smile has faded and he has gone from saying chemo is easy to saying “there was nothing good about today, Mom”.  It is so very tough to watch. My heart is hurting for him and each day that passes the ache seems to grow as I watch him get more sick and weak.

Around noon today the doctor took Jacob off IV fluids and nausea medication with the hopes we could move to Ronald Macdonald House for the night, come back tomorrow morning for a bloodwork and checkup and then head home if all looked okay. A few hours later it was obvious Jacob was in no condition to leave and they hooked him back up to fluids and meds. He is receiving 4 anti nausea meds now, and he still cannot eat or drink.  We will try again tomorrow and go from there. The Cisplatin he is on for chemo is notorious for causing this and often a delayed nausea reaction. So, another night here, but it’s where we need to be!

Jacob has received many Best Wishes letters delivered by volunteers. Thank you to everyone who took a few minutes to send him an email. It brightens our room and occasionally even gets a smile from Jacob – or at least one corner of his mouth moves a bit.  But even that is good to see right now.

We do have a pretty amazing view from our 8th floor room and have been treated to a few beautiful sunsets.  The small things become bigger things right now – and they are needed to help us cope through the difficult days.  Thank you for the continued prayers for Jacob.  💙🎗

Jacob is now on day 3 of chemo. Day 1 seemed like a breeze, but that quickly changed by day 2. Jacob’s appetite is completely gone, and he is too exhausted to do much beyond laying in bed. After today comes a 24 hour period of close monitoring, post chemo meds and hydration.

The chemo he is receiving is very high dose.  The cycle he is on lasts 5 weeks and has frequent hospital stays for chemo and clinic visits during the outpatient days. Today we finish week 1 of chemo.  Week 2 and 3 are “off weeks” so he can rebuild his bloodcounts and week 4 and 5 are “on weeks”.  Then the cycle will repeat itself so there will be some points that we can come home but it looks like the majority of the time will be spent at the hospital. The nights are fairly sleepless as he is woken every 2 hours for urine samples, vitals, medication and bloodwork.

Jacob’s blood counts will become extremely low during the chemotherapy. He will be at high risk for infection and any fever is considered a medical emergency and he will need to be at a hospital within 30 minutes to start antibiotics in case it’s a blood infection which can quickly lead to sepsis.  The amount of information we are getting over the last couple days is overwhelming.  Side effects, what to expect, what to do, what medications to take etc.  It’s a lot to take in.

There is a hospital program where you can send Jacob a message and he will receive it that day or next day by volunteers called Best Wishes. I will post the info below.  His room number now is 107. 8th floor. Oncology unit. Feel free to send him a message. It’s a little way to brighten his day.  Thank you again to all who are praying for Jacob and our family. The support is needed and so encouraging for us.  Visitors are more than welcome, just text me before hand. Jacob really enjoys having company and is already likely sick of spending every waking and sleeping moment with his mama 😋.

Jacob is a trooper. He hasn’t complained through any of this.  He is accepting of what’s happening but it is still very difficult.

Ray and the other 3 boys spent a night at Ronald Macdonald House – such an incredible place for families like ours. It will be a blessing for us on this journey. Keep them in your prayers too as they are mostly at home or other places away from Jacob and I- it will be difficult on them as well.

After what felt like months of waiting, the whirlwind that we have been on has hit a point where it feels real. Up until now I have been solely on auto pilot, doing what needs to be done and pushing to get to the point of treatment, all while feeling like i was watching someone else’s nightmare unfold before me.  Now it feels real. Now it’s setting in. This is really happening to my son. My child has agressive bone cancer. There will be long and many hospital stays. There will be long and many periods of being away from my other 3 sons and my spouse. There will be sickness and pain, and plenty of it. This is our new reality for the next 10 months or so.  

Yesterday Jacob has his port surgery and all went well. He spent the rest of the day resting and recovering and was in quite a bit of pain from the incision in his neck. We had some company during the day and evening which really helped to break up the time and help get his mind off of the pain.

Chemotherapy began today. It’s a bit of a process to get it all started. 2-3 hours of hydration, followed by another 2 hours of premedication before the chemo can begin.  By 3 pm chemo began, right when some family arrived which helped to ease some of our anxiety.  Jacob did amazing today and even said “chemo is easy”. ☺️ There was some mix up with the medication mixed by pharmacy or the pump was going to quickly, so one of the medications was stopped for the day.  This one (doxorubicin) is supposed to run for 48 hours straight but was stopped at 5 pm. Because they could not sort out exactly what was happening they discontinued the bag and he will get the next 24 hour dose tomorrow along with a second dose of Cisplatin. I finally managed to haul this boys skinny tush off the bed to get some fresh air. It will take some getting used to moving the wheelchair and the massive IV pole around but we will be pros soon enough! The sunshine felt wonderful and it was a nice getaway from the room.  Ray and the boys came for dinner. They didn’t seem to phased by Jacob attached to many wires and bags and were mostly just thrilled there was a TV and an Xbox in the room. We went to the garden patio for an ice cream break and met another family and played some games with them.

Thankful that day 1 is now behind us and the initial dose of chemo is over. Anxiety will hopefully be less and less as we continue on and get used to all the different drugs Jacob will be receiving.  I gave his hair a good tug to see if it would fall out – but I guess it takes a bit. 😋😋 Tonight I read a devotional with him based on romans 8:28. “I know that in ALL things God works for the good of those who love him, who have been called according to His purpose.”   Paul was able to say this while enduring immense hardships.  While we don’t understand why this is happening, we desperately want to cling to the promise and knowledge that God does work all things, even horrible things like cancer in my son, to something good….we can’t see that yet but we keep clinging to this.  If it is true for Paul, it is true for Jacob – Even amongst pain and suffering.  

Another early morning heading to Children’s Hospital today to find out the results of last weeks bone biopsy and PET scan. Only 18 days have gone by since the initial X-ray indicating Jacob may have an aggressive form of bone cancer. The wait has been excruciatingly long, but we are thankful for some of the normal days in between and that Jacob got to attend his grade 7 grad! It was a beautiful and an emotional evening for us.

Our day at Children’s started out with an IV line to hydrate Jacob before the kidney testing started.  During this time we had a visit from the orthopedic surgeon to check on Jacob’s biopsy incision, and the physiotherapist to give Jacob his new set of crutches and a lesson on how to use them properly. 

We headed down to nuclear medicine after this so they could inject radioactive dye in before his scans and bloodwork which would happen throughout the day to measure his kidney function.

Then it was time for the big meeting of the day.  The oncologist, nurse, and social worker met with us to discuss the results. The suspicions were correct and Jacob does have osteosarcoma in his femur.  The tumor is large, and they see what is called a “skip lesion” which is another section of cancer aboove the original tumor. The PET scan shows no sign of spread anywhere else, which is very good news. They do not consider the second tumor to be a metastasis because it is contained in the same bone. Below is a picture from the PET scan showing the tumor in his femur. It’s not pretty and was very difficult for us to see. 

On a humorous note, Jacob has named his tumor.  Delores Umbridge.  A villain from Harry Potter.  Our mission is to kill Delores as quickly and effectively as possible and in whatever way is needed.  We know there will be some drastic measures and changes involved, but we are all willing to fight this monster with everything we have.

Tomorrow morning, early again 😐 I will bring Jacob in for surgery to put his chemo port into his chest. We will be admitted to the oncology ward after that and chemo therapy will begin on Saturday morning for several days. Jacob will be in the hospital for 5-7 days for he first round of chemo.  There will be 10 weeks of chemo before the surgery to remove the tumor.

This news is not shocking for us, as we knew deep down that this is what we were going to be dealing with.  That does not make it any easier to digest, but we know that with the support of family, friends, our church community, and God…that we are not alone.  We continue to cling to God and his promises, knowing he loves Jacob very much.

The day ended with some hearing tests and an echocardiogram to get baseline testing of his hearing and heart function. 12 hours later and we are back at home, ready to begin this new chapter and to get our son healthy again.

We appreciate your prayers, and all the support we are being shown through this difficult journey we are on.