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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The first Sunday

Many people warned us that the first Sunday in church since Jacobs diagnosis would be very tough emotionally. We have known now for only 6 days that our dear son has bone cancer. This morning it was announced off the pulpit and prayed for by our Pasta Ted 😋. Last night as I thought about what the service may feel like, my anxiety shot up and I did not want to go.  This morning I went to lay with Jacob in his bed. Jacob and myself both wake early these days,  between 430-530 am so we talk and cuddle, read devotionals and bible texts people have sent us, or just lay silently together until it’s time to get up. Jacob told me he very much wanted to be at church this morning even though he was afraid, so we all went and I am so thankful we did.  The love and support we feel is so critical to us and is one of the reasons we are able to stand right now and be “strong”.

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Jacob and I stayed home from 2nd service for a much needed nap and after the rest of the crew came home we went for a walk.  This was our first time out with Jacob in a wheelchair, which turned out to be much harder on me emotionally than I was prepared for. Jacob was so active, so full of life and energy, athletic and good at any sport or activity he tried. To see him in a wheelchair watching all the other kids run around ripped at my heart, and I’m sure his as well. We did discuss choosing a positive attitude, and I hope that through this long journey we can continue to show that for each other.

Jacob is no longer allowed to put any pressure on his leg. His bone is so full of cancer that the femur is brittle with a large area of not much bone left, so he is at a very high risk now of the femur snapping.  It will be many, many, many months before we get to see Jacob even attempt to walk again.

Though all of this is incredibly overwhelming and we are so afraid of what the next weeks and months are going to look like, we remain strong and that strength can only come from God, the God who gives us peace that transcends all understanding.

Thank you again for the love, prayers and support you have shown us in so many ways. Without that all, too, it would be hard to stand and face this. We feel deeply that we are not alone.

 

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Please continue to pray for our brave boy, that the operation to remove a piece of bone on Wednesday will go well and that he will feel calm and held in Gods faithful hands, and also that the upcoming PET scan will show no other signs of cancer in his body.

A verse from this mornings devotion

“Because of the Lords great love, we are not consumed, his compassion never fails.   They are new every morning ; great is your faithfulness.”  lam 3:22-23

Taking the first steps

Around the beginning of April, Jacob started to complain about some knee pain. This gradually worsened, and soon he was limping and could no longer play sports or run around on the farm. By the end of April, Jacob could hardly climb the stairs in the house.  We visited our family doctor who suggested that it was probably Patellar Femoral Syndrome – a sports injury – combined with growing pains, since Jacob had recently ( and quickly!) sprouted up several inches.  We accepted this as an adequate explanation and were told to do some physio exercises and to come back in a month if no change or things had worsened.

Sunday, June 3, we noticed a swelling above Jacobs left knee. It was very hard and did not have the usual appearance of inflammation from injury.

Monday, June 4, I ( Mom) took Jacob back to the family doctor concerned that this did not look typical at all. The look on the doctors face told me that this indeed was not typical, and I knew already then that something serious was going on. We were sent for bloodwork and X-Rays. Only 4 short hours later we were called that the X-ray was back and that I needed to bring Jacob back to the doctor immediately. The secretary then added “ and Tracey, the doctor has requested that your spouse comes along as well.”  Fear and panic hit instantly, but we composed ourselves and went back to the doctor.  He showed us an X-ray of Jacobs femur and told us that it had a large tumor growing inside of it.  He said “ it’s bad” and “the worst of the worst”.  We were told that the radiologist thought it looked like aggressive osteosarcoma and  referred to Children’s Hospital Oncology and to an orthopaedic oncology surgeon.

The next couple days were an emotional rollercoaster, but I will spare you all those details.

Today, June 8, after waiting what felt like eternity, we went to Children’s Hospital for testing and consults.  The morning started with X-rays of his leg and a CT scan of his lungs.  The lungs are the most common place that osteosarcoma spreads to first. After the scans we met with our oncologist to discuss what the journey may look like.  We were told that the CT scan was clear with NO signs of cancer in his lungs. We were so relieved to hear this news.

An IV line was put in place and bloodwork done.  We met “our” nurse and “our” social worker as well. They assured us that we will never be alone when we are at the hospital and that they are our team, along with the oncologist.

The last test of the day was an MRI of Jacobs pelvis down to his shins.  I got to sit with him through this which was very helpful for Jacob as his anxiety was high.  *note to anyone sitting next to an MRI machine – take out the bobby pins in your hair 😋 . Mine were standing straight up and being pulled towards the machine.  We had to stop the scan halfway to get them out of the room. The scan took about an hour, and then we met briefly with the orthopaedic surgeon.  He will be performing an open biopsy of Jacobs femur on Wednesday, June 13.  Jacob will be put under for this as they will do a 2-3 inch incision to cut out a piece of bone to be sent to pathology to see what type of osteosarcoma Jacob has.  This will be an overnight stay.  Friday June 15 Jacob has a PET scan to look for spread of cancer in other bones at the BC Cancer Agency in Vancouver.  These last 2 tests are critical for the doctors to decide the course of action needed and what chemo meds to give and how often.

The cancer appears to be quite aggressive and the tumor is already very large. Once all the results are in, the doctors are thinking that we will begin with 3 months of chemo therapy to shrink the tumor and prevent spread, and then surgery will take place after that, with more chemo to follow. With osteosarcoma, chemo alone will not cure. The cancer has to be physically removed. The upcoming surgery will be invasive and bones will need to be removed and replaced. The road ahead will be very long, painful, and difficult for Jacob, and just as painful on our hearts to watch.

The outpouring of love from those around us has been a huge support. Meals, visits, hugs, cards, gifts, and most importantly prayer, has been appreciated by all of us so much.  Please continue to pray for Jacob and for our family as we step out into the unknown. We are afraid, but we know that with with God as our Guide walking along with us every step, that we are not alone.  This verse has been shared with us many times over the last few days.

“When you pass through the waters, I will be with you ; and through the rivers, they shall not overwhelm you ; when you walk through fire, you shall not be burned, and the flame shall not consume you.” Isaiah 43:2

We cling to these words right now.

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