Day 8 in hospital

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! 0502EEA8-EB05-4CA7-937A-AFEBC48C3E09Every 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. 61ABC224-D674-4617-8B0D-1455E692C00419BE0C0E-71B2-4D7D-BF12-DF4D4DAE19DC

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!! 47CB0719-DF3C-463C-85ED-18FE8234EA5CI 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.
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.
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. 🎗

Chemo isn’t easy

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.

D5CCEB5E-841E-4B4E-9562-6F7E75A7D3D0Around 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!

73088941-D236-4FA4-AF07-D24D9280BC87Jacob 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.

BD4B60A7-66AA-4520-AF2E-8ACD88CE1B6DWe 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.  💙🎗

Day 3 of chemo

36714221-02C8-4D33-861F-0B9EC2E154D7Jacob 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.

321DD4F1-504E-4582-8FB1-2BB8EE0F60B2Jacob’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.  0486ED44-1E1B-4DFD-9ECC-2A3FA2F625B8.jpegThank 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.

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Reality is setting in

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.  28A93E48-244F-4112-A861-2C0243F189B0

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.

7B642F6E-BAC0-482E-B21A-E4370B4A891AChemotherapy 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. BB8C699A-C514-4F3F-874A-C963311F6CB1I 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.  70A19D21-59A9-4EF7-B3D1-9889A3BC43C5

Biopsy and PET results

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.

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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. EA1A8747-02CB-4BEB-B8D9-89903FB91330.jpeg

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. 25C809EE-C16A-4D76-88F7-3B6E8CB0DC21.png

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.

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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.

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And we wait….

Some of you know that we will not receive the results of the biopsy, CT scan and PET scan until Thursday now, but I’m getting a lot of messages asking about the results that never did happen today.  Pathology called the oncology doctors to let them know they needed a few more days yet for the bone biopsy results.

So we wait.  Sometimes patiently, sometimes not so much. What we all want now is to start the fight and to kill this beast growing inside our son.  We are terrified of what this looks like, yet at the same time we know it needs to happen. In the meantime we have been able to have a couple good days, and a couple not so good days.  Jacob has been in a lot of pain from the open bone biopsy, and has been having fevers off and on since.  He is perking up quite a bit today and was able to attend a half day of school.  We initially thought he wouldn’t be attending grad, so last week I went down to the school to take some class pictures.  Because of the delay in the biopsy results he WILL get to go to his grade 7 graduation, which is awesome news even if it means waiting longer to start the fight.

A few pics…

For now we are trying to enjoy a couple “normal” days before the treatment begins which will be soon after we get the results in.  Jacob will be getting baseline testing done on Thursday as well of his heart, kidneys and hearing. The chemo he will be starting is particularly hard on these organs and functions.

Please continue to pray for Jacob. While he is handling it all okay so far, not being able to be active and knowing he won’t be active for quite some time is getting him down.

Until Thursday…..

 

 

 

 

 

Biopsy – another step behind us

This morning, bright and early and without much sleep behind us, we left for Children’s Hospital so Jacob could get an open biopsy on his femur.  The drive in was good, a few tears from us all when this song came on.

We tried to let the line “ let it go, my soul, and trust in Him, the wind and waves still know his name..” sink in as we got closer to the hospital and anxieties became more heightened.

When we arrived Jacob was gowned up and numbing cream put on his hands for the IV.  A nurse came to chat with us on the procedure, then the resident ortho surgoeon as well as the anastesiologist.

We then had a man come in from the B.C. BioBank, asking us if they could collect and bank any leftover specimen from Jacob’s biopsy of the tumor in his femur for future research. He explained there are only around 10 pediatric cases of osteosarcoma in B.C. every year and that it’s a “rare” specimen to get. He assured us that nothing extra would be taken from Jacob’s bone, but only if there was leftover would they use that and only when the surgeon and pathologists released it, and that it would be used ethically.  We decided to accept in hopes that it can be used down the road to detect osteosarcoma earlier and better methods and medications to destroy this beast.

The Orthopedic Surgeon then came to discuss some of the things he had seen on Jacob’s MRI and how he would perform the biopsy and remove the sample without contaminating any other part of Jacob during the removal.  I gowned up and joined Jacob in the OR room as they got the iV line going, stroking his hair as he drifted off to sleep, telling him to dream of boogie boarding in Hawaii.

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While Jacob was in surgery, Ray and I went up to Oncology to meet with the social worker to discuss finances, schooling, hobbies that Jacob has, family dynamics etc.  We were assured that Jacob would get help with some school while in the hospital. They plan on finding him an electronic piano and getting a piano teacher in for him on occasion as well.  We have nothing but praise for everyone at Children’s Hospital.

About an hour and a half later we got the call the Jacob was in recovery. I went in first to see him.  He had this goofy lopsided grin when I bent down to say hi to him and then told me he wanted to sing a song from Dude Perfect for me, which I encouraged! It went something like this “We’ve got some good news, we didn’t kill a cow”. 😂😂  Anyone who knows Jacob well will know he loves Dude Perfect YouTube videos, and anyone who also knows him well would know he would  NEVER willingly offer to sing a song solo.  We had a really good laugh over this.

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After a good nap, a physiotherapy lesson, and a frappachino, Jacob got an early discharge and we were able to come home this evening!

Several people have said to me “You’re so strong, how are you able to hold it together” etc.  I am not strong. I am weak. And hurting. We are not sure why this has been placed on our path. We are heartbroken over it and overcome with sadness at the thought of so much chemo and such invasive surgery for our son. We are clinging to God right now by a thread, yet we are clinging.  Though we do not understand, and may never understand, we know we don’t want to walk this road without Him.

Please continue to pray for our family as next week huge transitions start with much time spent at the hospital. Please pray that Jacob’s PET scan will go well on Friday with no signs of spread.  Pray for courage and peace as we move forward and hear the results of these tests on Monday and start the plan for treatment.

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