Chemo- Round 2

2A0E42AC-8DAD-4519-8D3B-470E7ECDC6FAWe 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.

4CB6CF1B-3B59-44A6-BD84-55E11D46E044On 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.

“They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone
You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can

Good days

8C6EAF15-E527-4FA7-9E39-C098FF4046CFThe 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! 19DF6B14-CFA0-49C2-8501-101082605EEEThursday 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.  B60A200D-9CA3-4435-9E67-2C2E7D4CA84FJesus 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.

Quick update from home

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. 96ED1DBA-CA50-4C93-A37A-ABB078CA2F58Jacob 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.

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Basketball, pizza party, and hair loss

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.

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15F7D32E-905D-4EF3-9814-256E49BA4B80We 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.

A4A7DC2F-A5C0-4FDF-BB01-364869F05B64Psalm 34:17-19

When the righteous cry for help, the Lord hears and delivers them out of all their troubles.
The Lord is near to the brokenhearted
    and saves the crushed in spirit.

Many are the afflictions of the righteous,
    but the Lord delivers him out of them all.

Thank you again to everyone who is praying and helping in various ways. Love to each one of you. 💙

Well that was was short lived!

4AC51D4A-9978-4A72-A8F6-48A546C40734I 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. A291C80B-034D-4B62-A635-8485F0B4417AWhen 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.  10D45FC9-83CE-4ED2-91C7-39F650C1741A

 

 

 

 

Home sweet home!

D683247D-7CE1-4E33-9F5E-45C5CEC9791DAfter 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. 833E9631-950C-4AC7-B8CC-5EE12CEF8E3B

A verse that has been shared with us by many people over the last few weeks… 3AAC23FB-8A33-4E86-A339-087F5516F7A7

Ups and downs

134EB07F-A98C-4FEF-9A4F-6D55B2DE2EB3Still 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 😁.

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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.

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