Every Step – Jacob’s fight against osteosarcoma

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

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

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

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

So much has happened since the last post – I’ll start with Monday, Labour day and go through the week from there.  For the last day of summer we went to the Zoo with some family.  Apart from Jacob burning his sensitive bald head, it was a wonderful day and a really positive way to end off our summer that really wasn’t summer!  School began Tuesday,  Evan to grade 5 and Noah to grade 1.  Kaleb was registered for preschool but we decided to take him out for this year so there are less schedules to juggle.  Jacob, of course, was supposed to begin school at Credo – to head to the big school with the big kids and begin a whole new chapter in his life. We fully accept that this looks so different now for Jacob, but there was still a huge sense of loss and sadness that day processing that he really will not enter grade 8 this year.  

Tuesday evening we attended the viewing for Monique Brand.  Such a difficult thing to process – seeing the body of someone you love, but knowing they really aren’t there anymore. Wednesday morning my dad picked up Jacob at 5:30 am for a PET scan at the B.C. Cancer Agency, so that Ray and I could still attend Monique’s burial and memorial service.  The pain was so raw, and our hearts hurt so much for the Brand family.  The memorial service was beautiful and the message from our pastor reminded us that nothing in this life, not cancer, not even death, can separate us from the love of Christ.  We believe this so there is comfort and hope amidst so much pain and sadness.

Thursday Jacob had an MRI of his legs, CT scan of his lungs, bloodwork, kindey function testing, heart tests, and hearing tests.  It was an exhausting day, but we heard good news.  The PET scan shows a large decrease in metabolic activity within the tumors. This means that hopefully most of those cells are dead from the chemo.  The tumors are still very much there and need to be fully removed still.  The MRI remains unchanged, because the size of the tumors remains about the same – wether they have necrosis or not. Because the tumor is made mostly of bone cells the tumors are hard and cannot shrink or go away on their own – the reason they need to be removed surgically.   The photo below is the pet scan from June, pre chemo, and the comparison one from Wednesday.  

That brings us to Friday. Back to Children’s again for a meeting with the surgeon and team to finalize plans.  The papers are signed, and surgery will take place at VGH on October 4.  We have known for some time which surgery Jacob will be getting. There really are only 2 “good” options.  Jacob was not ready to share what was happening yet with many, but he has come to a point where he is okay with it.

The surgery is called a rotationplasty.  Most of you have likely never heard of this as it’s very rare.  Rotationplasty involves a partial amputation of the leg – for Jacob it will be from his upper femur to below his knee. The lower leg and foot are rotated 180 degrees, the length is adjusted, and the tibia is then fused to the femur. The foot is positioned where the knee used to be, with the heel portion in front and the toes pointing back. The ankle now functions in place of the knee joint. The primary reason for rotationplasty is to enhance the person’s mobility as a prosthesis user. Placing the ankle joint in the position of the knee creates a functional, natural knee, and the toes provide important sensory feedback to the brain.  So instead of Jacob having a full amputation, he now has a partial below knee amputation which will give him the best mobility possible with no limitations once he is recovered and rehabilitated.  The appearance of the limb following rotationplasty is very unusual and is a concern for many people from both a cosmetic and a psychological standpoint – which is why Jacob was hesitant to share this until he was really ready.  We know it will look “strange” but we also know it will give him the best chance at an active lifestyle, something that is so important to him.  The other surgery option would mean never running again, never jumping again, multiple repeat surgeries to replace parts.  The rotationplasty will hopefully only require one major surgery, and a minor to remove growth plates down the road.   Jacob is bravely choosing this rare procedure and we are so proud of him. As are all the doctors and nurses here.  Hopefully the diagram below gives you a clearer understanding of what will be happening.  

This is huge – forever life altering for Jacob.  The surgery is complicated – for this reason it will be done at VGH where there will be a team of vascular surgeons to support as well. Jacob’s main artery in his leg will be cut and need to be reattached.  The nerve stays intact and gets “coiled” up in his leg.  Recovery will be long. Chemotherapy will slow down his recovery as his body tries to fuse the upper femur to the tibia and become one bone.  Until that happens, Jacob cannot attempt walking.  There is so much to try process yet as we get closer, and anxiety will rise as well.  Continue to pray for Jacob- to accept the changes to his body and patience for the recovery.  For the rest of our family as we support Jacob and also try come to terms with this all as well.

Friday also marked the start of Cycle 3 of chemo, round 6.   This is the last chemo before surgery as he needs the next 3.5 weeks to recover and hopefully his counts will be high enough by October 4.  This round of chemo hits Jacob especially hard.  Friday was also Evans 10th birthday which we celebrated at the hospital.  He was spoiled, loved the decorations and the Harry Potter cake made by a friend.  Evan is struggling mentally with everything that is going on, so I wanted to make his birthday still stand out and be memorable to him.  In any case, he recieved enough LEGO sets to keep his brain occupied for the next while! 

So, that’s our week recapped!  The week was exhausting and emotionally draining. On Sunday I was questioning if I could even make it through.  But it’s Saturday now.  We did make it through. With support from family and friends, and the strength only God can supply at a time like this…

An entire season has passed – summer is coming to an end now.  About 40 of those days and nights were spent in the hospital with Jacob fighting this monster.  Only a couple more days and school begins again.  I feel some guilt over the lack of summer activities for my boys.  We never even saw a lake!

A new season of school.  Evan and Noah return to John Calvin and Kaleb remains at home.  Evan and Noah are looking forward to being in school, but being away from Jacob even more is upsetting to them.  I am hoping that some routine and schedule and schoolwork to focus on will be helpful to them, though.  Distractions can be a wonderful thing. Jacob should be entering a whole new season of his life – high school.  Not beginning grade 8 and joining in with his friends in the excitement of the change in schools, meeting new friends will be very difficult for him, and for Ray and myself as well. This should be a very exciting time in Jacob’s life – but that has been taken from him for the time being.

A season of anxiety.  The all pervasive heaviness that we feel is always there – but the reasons for it sometimes change. The upcoming week will be difficult, anxiety filled, and very painful.  School beginning, and not beginning for Jacob.  PET scan, MRI and CT scan to check for any spread of cancer and to determine final decision regarding removal of the tumor and part of Jacob’s leg. Funeral for a very precious girl – Monique Brand.  Meetings with the surgeon and oncologist to go over scans and start surgery prep. Another round of chemo. And Evans 10th birthday.  After this round of chemo, the next step is surgery. We know that there will be a large amount of anxiety in the weeks before, and also for the days and weeks and months after during recovery.  We are not resisting what needs to happen in any way – we want the tumors gone – and fully accept that means Jacob’s leg and mobility will be forever altered.

A season without Monique. The Brand family are very dear friends of ours. On August 30th, Monique left her familys loving arms and entered the arms of her Loving Saviour.  Monique will be missed badly.  Her sweet smile, her sassy comments, her unique style, her artistic talent, her love for animals…we grieve, but we do not greive without hope.  Monique’s Mom said to me in a recent conversation as we talked about Monique and Jacob – that this is a season of our lives. This will not go on forever. No matter the outcome, it is a season. To look for Gods love and care, even during the dark days, and you will see it. How God continues to show Himself, even in small ways. It is a painful season though.  The ache in my heart physically hurts.  Monique – you were such a precious gift to have on this earth with us for almost 20 years and you will be dearly missed and I am so grateful to have been a part of those years. I picture you playing with your sister Danielle and your brother Jeremy in heaven. No more pain. No more sorrow. No more tears. No more sickness. 

A season with a “nanny”.  Nanny is such a terrible word.  In any case, as Monique’s mom reminded me, we can see God guiding our lives.  We have been trying to find a suitable caretaker for the boys now that school is starting so we do not have to keep uprooting them.  They need some normal and they need their home. Every drop off to different homes through the summer had the boys crying.  Our neice Emily has decided to take a year off of school to help us full time. This is a huge relief to us and will take a load of stress off of our entire family.  Before she was even aware of the need and want for a caretaker, I had told some friends that if I could pick anyone in the world to do this job, it would be Emily.  I knew she was going to school and that it was just a pipe dream, but a couple weeks later she sent me a text saying “ I would like your kids to call me Aunty Emily.”  Answered prayer. 

And so begins many new seasons – we do not enter them alone. This road is hard – and unbelievably painful at times, full of uncertainty of what the future holds, full of heart wrenching pain watching your child suffer toxic effects of drugs and altered mobility and being unable to change it for him – but we continue to rest in knowing that God knows. And that He cares. And that He does have a plan, somewhere, somehow… and that Jacob is His child.

Two and a half weeks at home! That’s how long the last “break” from chemo was.  Though it wasn’t all good, and we kept things low key overall, it was so good to just be near the whole family for a lengthier stretch.  Hop harvest has started and though Jacob would much rather be working, he still enjoyed spending time in the processing plant watching the action. This will be a very hectic time for our family trying to manage hospital stays, meetings, scans and surgery prep, as well as a month of hop harvest and school beginning in there as well.  But, the time at home is over for now- the boys off to grandparents in Chilliwack, Ray focussing on the hops in Abbotsford and Jacob and myself in Vancouver.  Today started with a CT scan of Jacob’s legs for surgery preparation. The scans will be sent to Germany so titanium parts can be made for his leg.  We are so close to a final decision for surgery but we cannot say for sure until the repeat MRI, CT, and PET are done the first week of September.  It will likely require amputation of some kind.  This is something we are working on processing together as a family. The road to recovery and mobility will, without a doubt, be incredibly long for Jacob -and forever life altering. 

Next on the to do list was prep for chemo. The nurses had difficulty accessing his port line and getting a blood return, so after a couple hours of trying we were sent to Imaging for a chest X-ray to see if the port line had gone out of position.  That would require surgery and replacement of the port. Thankfully that was not the case, and the line just needed to be “unclogged” – so a dose of draino (TPC) went in, which is just a non fancy word for anticoagulant. That did the trick and hydration and premedication started.  He received benydryl and ranitidine again in hopes he would not react – but unfortunately he did.  2 hours into the dose ( half the bag) Jacob got hives on his head, neck, back, chest and face.  The chemo was stopped and a large dose of steroids given to stop the reaction.  Things settled down and the doctor started the chemo drip again at a slower rate. Jacob’s lips began to swell despite the steroids, and the chemo was discontinued again with a second large dose of steroids given.  The doctors consulted and they do not feel comfortable giving any more methotrexate tonight, or maybe ever, because there are no other medications to give except epinephrine at this point to keep the reactions away – they are afraid the next thing will be anaphylaxis.

Tomorrow we will meet with a team of doctors to discuss the next steps and if the chemo protocol will need to change. Methotrexate is 2/3 of the protocol – so you can imagine how vital it is that he can receive this medication to kill the cancer cells. Today was long, and it was stressful. Jacob is resting now and is completely exhausted.  There is already so much going on, and these added stressors carry an immense amount of weight and bring anxiety. Not knowing what the next step is or the right chemo to give now feels pretty disheartening. The doctors  say that this is very rare, and they do not know the next step themselves.  Please continue to pray for peace for Jacob and the rest of our family as we prepare mentally for his upcoming surgery. Pray also that the doctors have wisdom as they discuss new options for Jacob so that we can effectively fight this monster. In all this, we know that we are more than conquerors through Christ. Romans 8:37

Its been 9 days since Jacob and his unicorn were last discharged from the hospital. This is the longest “break” we have had since chemo began.  I say “break” because it never leaves. There really is no break from cancer. From the side effects of the treatment. Medicine that leaves Jacob unable to stand, unable to eat or keep the other medication to counter the after affects of chemo down.  The first evening back home Jacob fainted. From then he was throwing up anything he took in and his mouth and throat become almost completely covered in sores, called mucositis.  Ringing in his ears has started, which we were warned about, but you hope so much that the side effects won’t affect him.  But they keep coming. Thursday Jacob was admitted back in hospital just for the day for hydration and IV medication.  He perked up enough for us to watch a 2 hour private pre-airshow and we went back Friday night again as well.  It feels so good to be able to do a few normal things yet as summer is quickly fading away. 

A few reflections on the last couple of months.

•  Our family and friends are incredible.  The love I have for them is so deep. Though my brain is often too full to say it or I’m too consumed and busy to take the time to express the gratitude I have for the love and care shown to us, this is something that has helped carry us through, and this road would be unimaginable without them.  This goes as well for the church community.  For anyone reading this who has helped in any way, thank you.  We need you, and will continue to need you.  They say when a child gets cancer, the whole family and the whole community gets cancer. It impacts so many people.

• Jacob continues to amaze me with his positive attitude and maturity and faith.  He still had not complained once. He still accepts what is on his path. He shows wisdom and foresight in his thinking and we really could not be more proud of this kiddo of ours.

• My world has shrunk and grown, all at once.  When you hear the words “ your child has cancer” the world seems to shrink.  Nothing else matters. It’s all consuming and encompasses everything you do, everything you say, everything you listen to, everywhere you go, every encounter you have with someone. I have only been to church twice in the last 2 months, so I feel more distant from the church family and functions.  Yet I’ve met many new people at the hosptial, new friends and people that I love dearly already, who have become my tangible support system while staying at the hosptial.  They get it. They know exactly. And in some ways, it’s comforting knowing someone else truly understands what your brain is going through. On the evening of Jacob’s first hospital stay, I tried to convince myself and others near me that I was going to keep to myself, to hang my head low in the hallways, to not engage too much with the other parents and children there. I was afraid initially to hear more sad stories, to meet people who may have endings to their journey that I don’t want to know about.  If you know me well, you would laugh at my stating that I was going to keep to myself. This goes against my character completely and by day 2, that statement went out the window and I was already starting to love the families there.  Now, when I go to get some water and I don’t return for an hour because I’m caught up talking to other parents, Jacob loves to remind me of my ridiculous claim I made that first day.

• The mind and brain are so powerful.  My brain has shown me incredible coping skills that I did not know I was capable of. The mode I’m in at the hospital is completely different than when I am at home. It’s actually easier for me emotionally when I’m at the hospital with Jacob. Partly because I feel “safe” there, and partly because my mind shifts into a different gear and I’m able to block what I need to at the time to get through.  When I go home is when things get harder for me and I allow myself to process. A hard part for me in this “coping” phase is that it’s hard for me to find room for other things going on. A woman in our church passed away recently – someone who I got along with very well, someone I went to each Sunday for a hug and a laugh.  I wasn’t able to process her death – there just wasn’t room in my brain for it. Another dear friends daughter is very sick, and I cannot be there for them as much as I want to right now. We both acknowledged to each other that the desire to be there for each other is there so deeply, but we both understand that most of the time 100% of our energy is directed to our situations with our own sick child- but it still hurts so badly.

Tomorrow afternoon Ray, Jacob and myself will meet again with the surgeon to discuss our options further.  Jacob received results of his bloodwork from yesterday and he has no white blood cells in his body at all.  He is extremely fragile right now and so vulnerable to infection. Your continued prayers are appreciated and needed.

Walking on Water – NeedToBreathe

The wind is strong, the water is deep
My heart is heavy and my mind won’t sleep
Oh can you heal, my fear it breathes
I need to know if You’re the shadow I can see

I wanna run to You when the waves break through
I wanna run to You and not turn back

There’s no turning back
Nothing in the past
My eyes on You again
Can’t see nothing at all
But Your outstretched arms
Help me believe it
Though I falter
You got me walking on water

The ocean’s singing, the song of grace
But if I’m honest with myself, I am still afraid

I wanna run to You when the waves break through
I’m gonna run to You and not turn back

There’s no turning back
Nothing in the past
My eyes on You again
Can’t see nothing at all
But Your outstretched arms
Help me believe it
Though I falter
You got me walking on water

It’s funny how time has this sneaky way of still passing by, even when you feel like the world has suddenly slammed to a complete stop.  Seasons don’t seem to matter. What day of the week it is has no meaning.  The date is only important for knowing the next appointment.  The “outside” world seems to keep moving, but ours has seemingly collided with this horrendous unfair monster.  Yet, somehow it’s August 4. Exactly 2 months ago on June 4 we were told that Jacob had a large tumor inside his femur. June 4, the day the world seemed to stop turning. But apparently time keeps ticking.  Summer is half over.  30 days out of the last 42 have been spent admitted in the hospital.  Surgery felt so far away at the beginning of this, and suddenly it feels too close. I wondered how we could make it through a cycle of chemo, how I could still be standing, if I would ever smile and laugh again, if Jacob could physically and mentally handle this. And just like time keeps ticking, we keep smiling and we keep standing and we do plenty of laughing.  Since the last entry, Jacob was discharged after a bit of a delayed clearance of the methotrexate and  we spent the night at Ronald Macdonald House as we had testing the day after discharge from 8 am to 3 pm.  His heart, his kidneys, and his hearing all look good so far.  These are the 3 organs and systems that have a high chance of being damaged from the chemo he is recieving. A couple weeks ago Jacob had genetic testing done to see if he is highly susceptible to heart damage and hearing loss, and the result came back that he isn’t. For example, the hearing loss seems to affect 40-60% of kids receiving the Cisplatin.  But if genetically you show higher risk, that would increase the “odds” to 80%.  In any case, we are thankful that after 1 cycle, all of the testing done matches his baseline tests.

Ray picked us up that Tuesday afternoon and we went home for a day and a half. Time back with the family is amazing, but the quick back and forth comes with a price for all – it’s a huge emotional upheaval for everyone.  It isn’t coming home to “normal.”  This continues to be so hard on the younger kids.  It’s challenging for our marriage as it feels like we are living separate lives in many ways.  Between housework and errands and bills and unpacking and packing in those short 36 hours home, we did manage a lovely walk at the Vedder River.  It is one of our favourite places to be as a family and for that  little bit, time seemed to move forward and a sense of normal was found. Cycle 2 of chemo began on Thursday. So far Jacob is doing much better than the first time he had these drugs, but they doubled the amount of medication to control the nausea. Tomorrow we may try take him off the IV meds and move some of them to oral form to see how he does. If that goes well, we could be discharged soon.  This cycle of chemo is the one that drops his blood counts so a longer recovery period in between the chemo sessions is needed.  Ray and the boys are coming today and staying at RMH for a night or 2.  Tomorrow morning, we are receiving a visit from the Gaby Davis Foundation. Our family was chosen for a grant through this foundation as well as gifts for each of the boys.  There are so many caring people working behind the scenes to try to ensure that this time of hardship is lightened just a little bit somehow.  Amazing individuals who have lost children to cancer but want to keep giving back and showering those going through similar situations with love and care. Though there is a beast waging a war inside my child, so many around us are fighting back with love and prayers and it is incredibly beautiful to witness.

Since the meeting with the surgeon and his team, Jacob had a couple days to process the information quietly before we spoke together about it.  While I cannot give too many details, there is direction at this point and a surgery that we are working towards, but the final won’t be known until his repeat scans in the beginning of September.  What we do know is that, based on his growth plates, Jacob’s bone age matches his actual age – meaning he has growing yet to do. About half a foot – making his total expected height 6’3”! This will also play into how and what decisions need to be made for pre and post surgery.  While we are choosing not to say much more at this time, I do ask for you to pray for Jacob. For peace and acceptance of what is laying before him.  For patience, and what appears to be an incredibly long recovery with intensive rehabilitation to get him mobile again.   We have 2 goals in mind. 1- survival.  2-mobility   I’ll sign off with a picture that sums up our nights here at the hospital.  Until next time…. and again, thank you for all the love, prayers and support. 💙

Yesterday Jacob had his last chemotherapy infusion for Cycle 1. We are so very thankful that, with premedication, he did not have an allergic reaction.  It is critical that he can continue to receive this drug for the next 7–9 months of treatment.  Jacob feels pretty decent overall after Methotrexate – another thing we are thankful for.  He is exhausted and his appetite is small, but he already started to eat again today. 

Today was a busy day.  Jacob had a physiotherapy session to strengthen his upper thigh muscles. This is critical to him becoming mobile more quickly after his surgery. Last week he did not have the strength to lift his own leg off the bed because he has lost most of the muscle mass from not being able to use his leg since May.  After only a few days of helping him through physio exercises he has regained some of the strength back.  It’s difficult to see, knowing that only a few months ago he was jumping and running and playing and even had a job lined up with an electrician for the summer – and all of that has been taken from him for now.  Yet, he remains in such good spirits. He is an inspiration to me, and many others around us.  The road ahead will be so very difficult. We remain thankful for small things, especially his beautiful smile.  Jacob had an echocardiogram of his heart done today. Every cycle of chemo he will get one because one of the chemo drugs can affect his heart function. While his heart looks good, the cardiologist saw 2 reasons for concern.  One is that the catheter heading towards his heart from the port is too close to his heart and heart valve.  He is now on a heart monitor to look for any rythym changes for the next few days. The other is that they see a bright spot, which could be benign tissue growth because of the foreign object in his artery, or it could be an infection.  His white blood cell level is high, so he is being closely monitored for this as well. If there is an infection or they feel the catheter needs to be moved, this will mean another surgery or 2 to correct the problem and replace the port.  Jacob is already going through so much, so we are really hoping that won’t be the case. I also met with the surgeon and his team today, with Ray joining in via FaceTime. We were given more information about what Jacob’s options are for his leg. There is 2 options to consider.  For both options he will be losing all or most of his femur and his knee as well.  There are many scenarios to think of as well as Jacob’s future and his activity level.  One would provide him more flexibility in regards to sports, particularly high impact sports such as basketball, and would only require one surgery typically but a much much longer recovery and rehab.  The other would limit him physically allowing him to still walk and play but he would no longer be able to jump on the trampoline or play basketball competitively.  The information is overwhelming and will require several more meetings with the surgical team and the pain management team as well. After the meeting I came back to the room with the surgeons assistant to give Jacob a generalized break down of what was discussed. Jacob listened but did not give any reply or thoughts on it – not one word.  He will need time to process it all and work through the different options and limitations and what he feels is most important for himself in the future.  This will affect him for the rest of his life and ultimately will be his decision for which option he chooses.  The only way that option would change is if they do not get clear margins from the surgery – and then full amputation is the only option. Everything must be considered including how much growing he has left to do. For this they Xrayed his left hand to look at his growth plates. They can figure out his bone age from this and a fairly accurate guess on how many more inches he will grow yet.

Please continue to pray for Jacob – that the chemo kills whatever cancer is inside his body. That the heart and port concerns do not become real issues. That he will have patience and peace and be able to process all the information being thrown at him in regards to making such a weighty decision.

Round 2 of chemo is done and round 3 begins in 5 days.  We really weren’t sure if we would even get to go home inbetween these rounds so this is a bonus.  Jacob never did have any more reactions from the medication. He did fairly well overall, with little nausea, but extremely fatigued. Jacob slept most of the 4 days in the hospital and went to bed again as soon as we arrived home. His appetite is poor but he is able to eat a few things like frosted flakes, some fruits, and cold chicken.  During the stay we were visited by a firefighter friend and the crew that day, and they delivered us a large meal as well.  We really enjoyed the visit, and I think a few nurses enjoyed it as well.  😋

Because Jacob reacted to the Methotrexate with hives, cough, and wheezing, he will need to be premedicated before he receives this drug again and given these medicitions for days afterwards. He needs the methotrexate so pray that his body will be able to tolerate it and the reactions do not turn anaphylactic.  I also noticed recently that Jacob’s leg looked larger and once measured it showed to be 3-4 cm wider around.  The surgeon recommended some repeat scans and there is growth. This is extremely concerning and worrisome of course.  The doctors say that sometimes the tumor can expand while it is dying off because it calcifies and swells, but we likely won’t know more until his surgery and repeat PET scans and pathology report once the tumor is taken out in September. We were shown his X-ray and MRI this afternoon and the images made me feel sick.  They are horrible to look at, and it’s uttely heartbreaking knowing it’s inside my child. The pic on the left is the X-ray and the one on the right is the MRI.  The MRI shows the second tumor above the large tumor.  It is much higher on his femur than I originally thought, which means he will lose more femur than we anticipated as well.  Our minds are very heavy today and it feels like too much to handle.

Ray and the 3 boys came for the weekend and stayed at Ronald Macdonald House.  RMH is a huge blessing and is an incredible place for so many amazing families.   Today, while my sister and niece stayed with Jacob, we took the boys to Stanley Park. This was our first outing as a family without Jacob. For just a moment, I felt like it was summer and things felt ok and normal and fun and relaxed and all the things that summer is supposed to feel  like. Although it was a fun few hours, the heaviness lingers and I’m unable to let my mind be free of all that is going on, and being fully aware aware that Jacob wasn’t with us and meeting 2 other oncology moms and their families there, the moment of feeling normal and relaxed did not last very long. While at the park we got a text that Jacob’s blood test came back cleared of methotrexate.  The shortest allowable clearance time for this drug is about 72 hours and Jacob cleared in 72 hours! The drug is extremely toxic on the kidneys, so you cannot leave and get off IV hydration until it’s almost completely out of your system.  We were having a friendly competition with another patient there receiving the same drug and admitted within a couple hours of Jacob.  Despite all the heaviness we still have many laughs, have made a bunch of new friends, and the nurses tell Jacob and I often that they love our sense of humour, sarcasm, and sassiness and that we bring cheer to the hallways. Again, thank you for the prayers, support and love. Thank you to whoever has given us their time to help us out – meals, visits, housework, yardwork.  We could not do all this alone and sincerely appreciate the help we are receiving. 💙💜

We began Round 2 today of chemotherapy with the high dose Methotrexate.  Although we really enjoyed the time at home after 17 days in hospital, there’s a heaviness in the house that seems to invade almost everything we do, and the heaviness only got heavier as we got closer to the next round of chemo.  There’s some “beauty” in not knowing what was really coming for the first round, but now that we know the toll it takes on our son, it’s much harder to anticipate and get ready for.  The younger boys are also feeling more down, and more tears are happening from them as we packed up their clothes and blankets and stuffies again.

Our family did really enjoy the “normal” days at home, whatever normal means now even with the weight hanging on our shoulders. We had a family BBQ and friends over, and got a lot of work done around the house and yard.  Jacob had a couple friends over and spent time on his gaming computer chatting with friends, and Jacob and I attended church for the first time in a month.

Chemo started this afternoon, and very quickly into it Jacob started coughing and wheezing and getting some hives.  The nurses kept the drip going and monitored more closely but things continued to worsen and after an hour his upper body and head were covered in hives. Because of his prior history of anaphylaxis from bee stings, it was fairly stressful. Benadryl was tried but didn’t seem to help so they added in another medication that quickly took it all away.  He will continue to be on these medications for the next few days as the Methotrexate is still in his body.

Because of the toxicity of this drug, he cannot leave the hospital until there is only  trace amount left in his blood.  Tomorrow he will get a “rescue drug” that binds to the methotrexate to get it out of his system as quickly as possible. Then it’s a bit of a waiting game for the levels in his blood to clear.  This round has hit him hard quickly. He has hardly spoken a word since 2 pm. In general he just feels exhausted and doesn’t want to engage with anyone or anything.

On the way to the hospital this morning we listened to “Even If” by Mercy Me. Last summer I went to their concert and cried during this song because it spoke to me about some other areas in our lives, but now it hits so much harder.  This is one of the worst things I could have ever imagined happening to one of my children.  It’s absolutely heart wrenching. Yet somehow through it all we remain grounded in Christ and his plan and will for our lives, somehow still able to say, It is well with my soul.

The last 4 days have been pretty good! Life feels somewhat normal, and everyone is happy to be at home with each other again for a bit.  Jacob has been enjoying his new gaming computer, some time with friends, hanging out with his brothers, and going for walks.  Tuesday we went for a walk, and for most of it Jacob was pulling out his hair. By the time I got home with him he had several large bald patches.  While it was difficult for him, he made the decision then to shave it off. He had a cry over it and then was ready. We didn’t make a big deal of it, and got some offers from friends and family that they would also shave their heads but  decided to just keep this step in the journey as in the background as possible and that it wouldn’t help Jacob mentally for anyone else to shave their heads. At the beginning of all this, Jacob thought losing his hair wouldn’t affect him, but it ended up being considerably harder on him than he thought. Jacob style though, he kept on smiling.  And, just as handsome if I do say so myself! Thursday we went back to Childrens Hospital for a check up. Jacob’s blood counts look pretty good, and everything is still moving up and no blood transfusions were needed! His counts are high enough to begin the next round of chemo for this cycle. Evan tagged along to keep Jacob company. It’s crucial we include Evan where we can in this. Our family is sort of separated by the “bigs” and the “littles”.  Jacob and Evan do everything together, and Noah and Kaleb have each other.  This has been very hard for Evan to process and see his big brother in the situation he is in. 

Ray is also having a hard time. Though we both have accepted that our roles right now look very different – Ray continuing to look after the chickens and the hops and juggle the kids around somewhat, and myself the primary caregiver to Jacob inside and outside the hospital – it leaves Ray feeling somewhat helpless.  While he knows he cannot leave the farm and stay with Jacob and I, or keep the younger kids at home, it’s difficult for him to be so removed from it all.  Its difficult for me as well to send the 3 boys to other homes and to not be able to take care of things here like I normally do, but it has to be done. Every little part of our lives is affected by this.  We are thankful for an overall feeling of acceptance, and very little anger. We trust Gods will, even though we really don’t understand it.  Jesus said “ do not worry about tomorrow, for tomorrow will bring it’s own worries.”  How true that is. Not just for us, but for everyone.  When you are thrown into a trial like this, you think about it much more deeply though.  To look at the tomorrow’s seems unbearable to us so we focus only on the day we are in. Revelations 21:4 tells us that a day is coming without pain or tears. So we continue to lean helplessly into His arms because it’s all we can do. Whatever tomorrow brings, we know He will be there with us.