Osteosarcoma is a beast

Round 12 and 13 of chemo are behind us. 5 rounds left to go for Jacob, all of them methotrexate. Jacobs chemo protocol, well known as one of the hardest and most damaging protocols in childhood cancer, contained 3 different chemo agents. 2 of them are finished with, Cisplatin and Doxorubicin, and he will never be able to use these chemotherapies again, even if there is a relapse because they are so damaging and toxic on the body. 95% of kids that go through the osteosarcoma protocol end up with other health problems – hearing loss, cardiac or renal complications, infertility and secondary cancers caused by the toxicity of the chemos used. We have a love/hate relationship with chemo. It has kept Jacob alive, yet is so harmful to him at the same time.

We heard news yesterday that another boy we know with osteosarcoma who had a leg amputation a couple weeks after Jacobs amputation, has been diagnosed as terminal. The chemo is having no effect for him and the cancer was spreading during his treatment. More tough news, more to process, and hits home hard with the reality of how aggressive osteosarcoma is and how difficult it is to treat.

A couple of weeks ago I took Jacob to see the vascular surgeon at VGH. Everything is looking great – his artery has very good flow, but the vein is a little bit sluggish yet, so Jacob was moved from twice a day blood thinner injections down to once a day. We are very thankful for the progress in his healing. While in the surgeons office, another surgeon came to meet Jacob, and they started looking though photos on his cell that were taken during Jacobs amputation. I made a split second decision to ask if I could see them, which I did….and though I’m not sure if I regret that decision yet, and though I don’t think it was fair of the surgeon to pull out the pictures of Jacobs surgery right in front of me so casually, what’s done is done. The photos were horrific. I had to reprocess the entire day of his amputation all over again. It was a huge reminder of how much of a beast osteosarcoma is and how devastating and radical the treatment for it is. It broke me inside seeing Jacob broken physically. It also made me appreciate how well Jacob looks now, and that he made it through the surgery. It made me want to give Jacobs surgeon another hug, and tell him again how thankful I am for his work and skill and care for Jacob.

A couple days ago, Jacob went to meet the prosthetist. This is a very exciting step to take, the first step to taking his first steps in his prosthetic leg. The folks at Barber Prosthetics were so friendly and welcoming. They took time to explain the process in as much detail as they could, showed us around the lab and explained how his prosthetic will be made. We hope to have time next week to get a mold done of Jacobs foot, and officially begin the start of his new leg!

Next week we head to Vancouver on Wednesday for physio, clinic, lab work, X-rays and an appointment at UBC. If his counts are high enough, chemo will being on Valentine’s Day. If they are not high enough, we will do another physio session and get the mold done of Jacobs foot, and head back home Thursday evening until bloodwork shows his counts have recovered enough to to begin round 14.

During the wind storm last night I was chatting with one of the boys who was a bit scared – reminding him that he was safe in the house, that the house is built well with a firm foundation just for these types of things. This is how we feel regarding Jacob. Though the winds hammer and cause damage, we remain safe and secure in Christ, our Firm Foundation. Though there is fear and uncertainty, we continue to trust in His unfailing love, and we will not be shaken.

Round 12

Since the last update, Jacob completed Round 11 of chemo and has started round 12 as of yesterday. We enjoyed some “extra” days at home before his chemo could begin for round 11 because he was neutropenic for longer than expected. The downside to this was that we tried 3 times to get the round going, and had to say our goodbyes to the family those 3 times as well. Now that we have been home again after such a long stretch away, the goodbyes are seeming to get much harder on the boys, specifically Noah. Kaleb continues to do very well, with his very limited understanding of what’s going on, but Noah and Evan are struggling. I feel like my words to them are getting redundant as I repeat over and over to them to remain brave and positive, that we have no choice in any of this and have no choice but to go through this, that this part will end eventually….

Jacob turned 14 on January 13th. Birthdays have the tendency to prompt people to reflect on the year that has gone by, and I would assume considerably more so when going through deep trials. I tend to not want or like to reflect too much on the year that has passed, because it brings pain and sadness. Jacobs first year as a teenager was not at all what we expected, and it saddens me to think of the things that could have been, but aren’t. Being in high school, making new friends, joining the basketball team, running and playing on the farm with his brothers. As a parent, one of the things you want the most for your child is health and happiness and “normal”. We refuse to let cancer take away our happiness, but that does not negate the fact that this is so very hard. The day was good overall…decorations, presents, cake. As much as we could do for Jacob while he laid in his hospital bed. Jacob did say the next day when I asked if he enjoyed his birthday despite how he was feeling, that he was grumpy. This made me sad, and proud at the same time. Sad for his birthday to be celebrated like this, and sad that he also was reflecting on the past year, but proud of him because since this journey all began 8 months ago, that is the first and only time I’ve heard or have seen him grumpy. He inspires me every single day.

Jacob continues to struggle through the methotrexate rounds, with high levels of chemo in his body for many days after, and a lot of stress on his kidneys. His allergic reactions come and go, but seem to be more under control with various medications. He is currently on day 2, and hasn’t spoken a word in the last 30 hours. Mouth sores and mucositis have begun, and the last bloodwork showed his kidneys are again not functioning as well as they should be. Because of this, the chemo is coming out through his skin, turning his skin brown from the toxicity of the drug.

We heard sad news today that a baby boy we got to know and love at RMH passed away early this morning. Baby CJ was very sick, but he brought so much joy to several of us at RMH. I spent many nights holding him for hours. He was fostered by an amazing woman. Our hearts are hurting again for the loss of another child…but I am so thankful to have been a part of his 9 months of life here. I am trying not to question why, but after 4 deaths in the past month of dear children we knew, it’s very difficult to not ask that question.

For good news- Jacobs wound is almost closed! This is a huge deal, because he really needs to shower 😂. It’s also great because the risk of sepsis is lowered significantly now, so home becomes a safer place to be in between rounds. We are hoping to see the vascular surgeon at VGH on Monday to discuss if we can stop the daily blood thinners. The last ultrasound of his vein and artery that were sewn back together looked really good with no signs of clots. An X-ray is lined up for this week of his leg as well to check if there has been any healing to his bones.

And although this is also sounding redundant, thank you to all of you for your continued support – with prayers, love, visits, meals, texts, gift cards….many of you have made a long and hard road just a bit easier on us as a family. 💜

Hello 2019, Goodbye 2018

2018 will be a year our family never forgets. The year where life had a “before cancer” and an “after cancer”. The year where our lives changed drastically, taking us to many places and situations we couldn’t imagine ever being in. Most people start the new year with resolutions – a fresh beginning, the start of something new with less bad habits, better health, new goals, renewed purposes and aspirations. 2018 rolls right into 2019 for us in continuing the fight against osteosarcoma with Jacob. There are no resolutions. This does not feel like a fresh start or new beginning. 2018 brought a diagnosis of aggressive bone cancer to our precious son. It then brought a multitude of tests, surgeries and round after round of intensive chemo. It brought the amputation of half of Jacobs leg. It brought health scares from chemo, tears, fears, and plenty of pain. The year included blood transfusions, platelet transfusions, toxicity, allergic reactions, low blood pressure, high blood pressure, neutropenia, fevers, nausea, weight loss, mouth and throat sores, exhaustion, feeding tubes, sleepless nights, hundreds of injections, hundreds of blood draws, and an enormous amount of time apart from our family. In total in 2018, 215 days passed since we learned Jacob had cancer. 131 of those days were spent away from home for Jacob and myself, in hospital or at Ronald Macdonald House. 2018 also brought the loss of 4 beautiful girls that we knew, a 2 year old, a 6 year old, a 12 year old, and a 19 year old, as well as the loss of a 6 year old boy – each one special to us, and loved by us. 2018 ended off with very heavy hearts, grieving for our friends and their immense losses, and grieving for our own situation and the intense fear of loss ourselves.

Christmas was spent at RMH with our whole family. On December 28th, we were finally, finally given the go ahead to go home after 90 days! Jacob and I left the home October 3, the day before his amputation. We packed a few things, thinking we might be gone for a couple weeks. I’m so thankful that I did not know on that day that it would be 3 months before Jacob and I could return home again. Coming home felt incredible. Jacob and I were both nervous and afraid to be away from our safety net of being near the hospital and being around people who understand, but the moment we pulled into the driveway a weight was lifted off our shoulders and it just felt good. We spent 5 days at home, enjoying family and friends visiting, lots of time in the hot tub and playing and reading and snuggling with the kids, a few church services, and celebrated New Years Eve. For just a few days things felt ok, almost “normal”. For just a little bit, we could take a break from the hospital routine, and co-living at RMH. For just a while , I could pick up and be a mom to my little kiddos.

On Tuesday night, when I told Noah that Mom was leaving again for the hospital, and not sure when I would be home, he lost it and cried inconsolably for a long time. Once he settled down he started asking questions. Big questions. Ones that no mom should be answering to a little 6 year old. He told me the story of Terry Fox, and how they cut off his leg but he still died anyway. He pegged me with questions over and over, including “why did you leave me?” “why weren’t you with Jacob while they cut off his leg?” “what did they use to cut off Jacobs leg?” “how much did he bleed?” “what if the cancer comes back?” “what if it the doctors didn’t get all his cancer?” “what if he dies………?”. The most heart breaking part for me was not being able to tell Noah that Jacob would for sure be okay, that Jacob would for sure “beat” cancer. I wanted desperately to tell Noah with 100% certainty that Jacob will be just fine, that we just need to push through the rest of chemo, push through rehabilitation…and then life can be normal again for us. But the truth and reality is, I cannot. We don’t have that assurance. What we do have is assurance that God knows, He cares, and he has a perfect plan. I told Noah to keep being brave and strong, to not worry about tomorrow, and to keep trusting God for whatever tomorrow holds. Because that’s what mommy is doing. It breaks my heart to have to tell him these things – conversations that are too much and too big for his little brain.

For now, we are still back home, waiting for Jacobs counts to come up. He currently has no immune system at all, so this weekend we will be keeping him home with no company over. Sunday night Jacob and I will head back to RMH for an early morning test Monday to see if his body is ready for chemotherapy. We have 8 rounds to go yet.

Jacobs wounds are looking absolutely fantastic and are almost closed!! We were told they would not heal during chemo, but Super Jacob is proving the doctors wrong. The femur and the tibia, however, have shown no signs of healing or fusing together. Jacob is eating better on his own, and chose himself to pull out his feeding tube on Christmas Day. While there has been so much heaviness and sadness around us lately, we are very pleased with the progress. Jacob maintains an almost impossible to understand acceptance of everything and a very positive attitude. If I were to make a New Years resolution, it would be to resolve to keep the positive attitude – to keep loving others around us even while being pummelled from every end with things we cannot control, to keep accepting what God has planned for 2019, as we did in 2018.

“But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.”

Halfway through chemo!

Jacob is officially halfway through his chemo – 9 rounds down, 9 more to go. Looking back is hard on us, and stirred up many emotions again. It’s almost impossible to really fathom everything that has happened in the last 6 months. Have we even begun to process it? Has the fact that Jacob lost half his leg really hit us yet? I am still in the Category 5 hurricane mode, triaging almost everything in front of me. If it’s insignificant or I don’t have the brain space for it, it quickly gets tossed aside. The reality of all this is that we are constantly in a state of trauma – low level, medium, high…for ourselves, and for the people we love and care for around us that have become so dear, and are fighting their own battles.

Jacob is doing well this round with no toxicity. We are heading into day 10 of this hospital stay as his body is struggling to clear the chemo from his blood. A typical stay for the high dose methotrexate is 3-4 days, with clearing happening at, ideally, 72 hours. We are at hour 200 now! No one is really surprised by this, as Jacob has yet to have a “typical” round. His neutrophils ( immune system) are at critical levels again which means staying at RMH this weekend, if we manage to get discharged before then, and his next round of chemo beginning already this Monday. The protocol has intensified for the last half, meaning about 75% of the time will be spent in hospital.

Everyone keeps asking us if we will get home for Christmas, and while we would love to give a resounding yes to this question, it is almost 100% that the answer is a disheartening no. Jacobs wound is still open, with risk of sepsis too high to leave the hospital grounds. The next round of chemo will keep his immune system at critical levels for the next 2 weeks. While this is disappointing, our hearts really aren’t in the “Christmas spirit”. It’s hard to even look ahead to Christmas Day because things remain so fluid and changing all the time. Home feels far away and is starting to not even feel like home anymore. We look forward to the kids and Ray visiting us at RMH, and their presence is what matters. Home now comes to us, and Jacob and I are content with that.

The full pathology report is finally in for Jacobs leg. The overall death of the tumours was 95%. Most of the margins were good, but one margin was only 0.4cm away from the tumour. A good margin is 3cm or more, however there was an intact bone membrane in this margin which the surgeon feels is adequate. Jacobs bone has showed no sign of healing yet. Xrays will happen every 6 weeks or so to keep assessing if the bones are trying to heal together so that we can begin the process of getting a prosthetic leg started and to begin to bear little bits of weight on his leg.

Many people are asking why chemo still has to happen if his tumours are gone now. This cancer is extremely aggressive. Because Jacob had a second tumour, there is very high chance of spread elsewhere called micro metastasis. The chemo now is to kill those cells – invisible on scans, but almost certainly there.

Thank you for the continued prayers and visits. They mean so much to us. We have been away from home now for 75 days, with a new goal now to get home in January sometime. I am missing our Krabbendam family adults only Christmas party tonight – but I am sending Evan in my place to be me. 🤣 Jacob remains in very good spirits, which I am also so thankful for. We have lots of fun together and get along unbelievably well considering the amount of time we spend together!

 “For My thoughts are not your thoughts, neither are your ways My ways. . . . For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts” Isaiah 55:8-9

Day 100 – but not the kind to be celebrated

Today marks 100 days and nights of being in hospital and away from the family since Jacobs diagnosis on the first day of summer. Away from everything I knew that was normal. Today also marks 60 days consecutively of being away since Jacobs amputation. Many people celebrate day 100 of something. 100 days clean of a bad habit. 100 days until a wedding day. “100 Day” for grade 1. This, however, is nothing to be celebrated. The time away from the family and in hospital has been much more than we anticipated. I miss normal. I miss my boys. I miss Ray. I miss my friends, my home, my pets, church, being involved in the kids schooling, helping on the farm, visiting and caring for other people. So much has been taken from us. While I can truly say we have maintained staying happy and positive through the last 6 months, today I don’t feel that. I feel numb. I feel worn out. Almost emotionless. I’ve built so many walls to protect myself from the pain of all the losses, and am only focussed on helping Jacob get better, helping him beat this ugly monster, helping him through all the horrible side effects. Today, day 100, I’m allowing myself to process some of the losses and some of the pain, and all I feel is sadness.

The last couple weeks have had many ups and downs. A huge highlight was the Canuck game last Monday night – the kick off game to Hockey Fights Cancer, where Jacob had the amazing opportunity to drop the ceremonial puck, wheelie style. It was overwhelming and incredible. The standing ovation for Jacob was so heart warming and I was bursting inside with pride for how strong and accepting and determined Jacob has been. We had 34 tickets in the Legends Suite, so many of our family and friends were able to share in the experience with us, as well as many friends, nurses, and doctors we know in the crowd. Our family was taken down to the locker room to meet the Canucks after the game. It truly was a remarkable night.

Jacob and I are living at Ronald MacDonald House in-between hospital stays for chemo because his wound is still open in 3 areas, his immune system is not functioning, and we have daily appointments at the hospital. There are many people we’ve come to love at the house. I’ve been called “the most social person there, by far” by many of the staff and residents. While there is joy in this, it also comes with sadness. Dear friends of ours learned this past week that their daughters cancer has relapsed, and is ” treatable, but not cure-able”. There is a heavy weight on my heart, for them, and for the fear of the unknown with Jacob, knowing this cancer is so aggressive and also has a high relapse rate.

We are currently in hospital now, 3 days post chemo. Many of you have read already that Jacob had toxic levels of the chemo in his bloodstream. The chemo was too much for his kidneys, and his kidneys stopped processing it, leading to a large build up in his blood stream and cells all over his body. A rescue med was flown in and given early this morning as an antidote to methotrexate toxicity, which thankfully came quickly because Jacob was in a life threatening situation. This medication rapidly binds to the chemo and expels it from the blood stream. We are working now to get the rest of his body cleared with high doses of another rescue medication, and hyper hydration. Jacobs kidneys have taken a hit, levels of creatinine are too high – indicating they’ve sustained damage- and his blood pressure is way too high. The hope is that the rescue meds were given soon enough so that there will be a reversal of the organ damage. Jacob is supposed to receive this chemo again next Monday, but doctors are working to figure out a plan as his kidneys won’t be able to tolerate the next dose by Monday. For now, we sit and wait for all the chemo to be cleared from Jacobs system, and wait to see if kidney function returns to normal.

Thank you to each one of you who has carried us in some way. For your love ,your texts, your visits, meals for the family at home…and above all, your prayers, because there are many days when the words just are not there….thank you, thank you, thank you. 💜

Romans 8:26-28  “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.  And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

https://g.co/kgs/ETT7Bj

Worn. Tenth Avenue North

I’m tired
I’m worn
My heart is heavy
From the work it takes to keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn
I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
And my prayers are wearing thin
I’m worn even before the day begins
I’m worn I’ve lost my will to fight
I’m worn so heaven so come and flood my eyes

There’s nothing lucky about cancer

It’s been 48 days since Jacob’s amputation. Initially we were told that our stay for this would be about 10 days. Mentally I was prepping for closer to a month. I thought that I was tagging on quite a few days extra so there would be no room for disappointment when it maybe turned into 20 days. While we are disappointed that this has now reached almost 50 days with no date yet of going home, Jacob and I willingly accept it as it comes, knowing he is where he needs to be.

After a rough round of chemo that kept him in hospital for 9 days receiving every anti nausea possible, he is now over most of the nausea. Apart from being very tired and having a poor appetite, he feels good. However, he has no immune system at all right now. His counts since chemo have bottomed out, and because he still has an open wound, the risk of him getting an infection and going into septic shock is extremely high. This is the only reason at this point that we are not allowed to go home. The doctors consider Abbotsford too far away should Jacob get an infection or fever. Jacob’s platelets recently dropped to a critically low level as well. This is the first time in his chemo rounds that his platelets have dropped into a dangerous level, and this gives us indication that his body is getting exhausted now trying to constantly rebuild the bone marrow after each chemo cycle. Last week Jacob received a platelet transfusion. Although he couldn’t finish the treatment because of an allergic reaction, ( in typical Jacob fashion!) it was enough to boost him, and we are thankful the medication worked quickly to stop the reaction. Because he is on daily blood thinner injections, low platelets are more concerning because he is already compromised with his blood clotting abilities. A simple nose bleed could turn really bad really quickly for Jacob.

Jacob is back to physio a few times a week, as well as bloodwork, bandage changes and wound checks, which mean daily appointments at the hospital. Staying at Ronald Macdonald House is convenient for that reason. A 5 minute walk to the hospital instead hours in the vehicle is a bonus. If we have to be here, we will consider that a win. ☺️ Jacob has lost almost all of his muscle mass in his left leg. He left bum muscle is completely atrophied as well. Physio includes trying to engage the muscles, and any contraction of the muscle he can make is celebrated, although I think Jacob’s getting tired of his mom cheering whenever he manages to move his bum a bit! He has a long, long road ahead, but he also has the drive and the determination. We are not afraid of the road to getting Jacob into a prosthetic and walking again.

The final pathology report from Jacob’s leg is still not completed. While what we are seeing so far looks positive, we are still waiting on results of the tumor at the top of his femur and the last bone margins, and the wait is getting a bit difficult now as we wonder why it’s taking so long.

Tonight, Jacob and our family are attending the Canucks game, and Jacob will be dropping the ceremonial puck. The game tonight is the kick off game for Hockey Fights Cancer, which is a month long fundraiser and awareness campaign for childhood cancer with the NHL. We’ve heard some comments that we are “so lucky”. I want to take a moment to clarify that although this will be a really neat experience, it is anything but luck. Cancer isn’t lucky, and neither is losing half of your leg. Jacob is fighting a life threatening illness, one that is very tough to beat. This will be a very emotional night for us. What this has done, however, is given Jacob something to look forward to and work towards during his recovery. We were asked about one week after his amputation if Jacob would be interested in doing the puck drop, and while it seemed impossible to picture at the time, it did give him motivation to work through his pain and mobility. What it will also do is give exposure and raise awareness about Jacob’s rotationplasty, as well as childhood cancer. We are very aware of the looks and stares and comments that happen when people see Jacob with is backwards foot. While some have been incredibly rude, we expect the looks and knew going into this that people would turn their heads wondering how it’s even possible. The exposure the Canuck game will give is huge, and for that we are thankful.

But not lucky.

In the meantime, as we wait for either Jacob’s immune system to kick into gear, or until his next round of chemo next Monday, we spend our time hanging around at RMH, doing activities and spending time with other families here, who have just become an extension of our own family. RMH is an incredible place, our home away from home right now.

Thank you for the continued prayers for our family, specifically for Jacob and that no infection sets in, for wound healing, and for our family back home who continue daily “normal” life without us there.

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Is 40:31

Category 5 Hurricane

In a recent conversation with someone, I was asked how I can cope “so well” through all of this, how am I not breaking and falling apart etc. As I tried to think of ways to describe how, a major storm came to mind. You know it’s coming, there’s warnings. So you batten down the hatches. I feel like that’s what I’ve done for myself mentally. I’ve boarded up the windows and doors and am prepared for the torrential rain and devastating winds that just keep hammering. All my focus is on survival. No outside influences are able to change that focus. Every ounce of energy in me goes to making sure this storm doesn’t destroy us, doesn’t break us, doing everything possible to protect Jacob and get him through this seemingly endless cyclone of events.

Jacob is one month post amputation now. Chemo started again on Thursday. This cycle has been especially hard after everything Jacob has just been through. It rips me apart inside saying to him that only weeks after losing his leg, that this is a good thing for him. After the last 2 weeks of working him so hard to gain strength and mobility back, watching him smile and laugh and exert all his energy with so much determination despite the pain – to filling his body with toxins only to weaken him to the point of being unable to stand, unable to eat and drink, and most of the time to even speak, is really, really tough. Jacob continues to have no appetite since the surgery. My guess is that the feeding tube will remain for a good length of time now. It does make giving some of his medications much easier and takes a bit of stress off of him knowing he doesn’t have to put any energy into trying to get food down. Even water has become unappealing to him. Within hours of the chemo beginning, mouth sores began which makes eating and drinking even more challenging. As always, we can only take this hour by hour, minute by minute.

On Wednesday we got to see the X-ray of Jacob’s leg. He has 12 screws along a plate that runs the entire length of the leg now. The fibula was purposely broken at the top to fit. The top of his femur and the tibia are held together by the hardware. The bones will not fuse until after chemo is done. Until then, Jacob can bear no weight on his leg in any way. We are mentally prepping for up to a year before healing takes place and we can start the heavy rehabilitation into a prosthetic leg. While the X-ray looks pretty crazy, it is so so amazing to see his leg with no massive, ugly tumour. I don’t see screws and plates, I don’t see a “little backwards leg”. I see a cancer free leg. An opportunity to live. To run and jump and play sports. To chase his brothers and shoot hoops and be the farm kid he wants to be so badly. I see a beautiful leg.Jacob is finished now with the chemo drug Cisplatin. He had his last 2 bags put in and is now at his “lifetime dose”. This is partly scary and partly really great. Scary because we know it kills the cancer cells very well and he can never use it again if needed. Really great because it is the hardest drug given in this protocol. He is currently on 17 different medications, most of which help him through the side effects of the Cisplatin. It’s been 31 days now since Jacob and I have been home. It’s hard to say when home will happen. We may end up back at Ronald Macdonald House after he is discharged from the hospital because he still cannot use a toilet, and we are unsure if he’s able to sit in a vehicle yet to get him home. The incision around his upper leg is still a concern as well so that needs close monitoring.

Evan spent a week with Jacob and I at RMH which was so so good for him. And for me. He struggles the most by far. It was such a joy to not hear him crying on the phone daily, or saying goodbye to him and watching him sob as Ray drives away from the hospital.

Thank you for the continued prayers, which we know are being prayed all over the world for Jacob, as we ride out the category 5 storm we are in.

Praise You In This Storm

Casting Crowns

I was sure by now, God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it’s still raining
As the thunder rolls
I barely hear your whisper through the rain
I’m with you
And as your mercy falls
I raise my hands and praise
The God who gives and takes away
And I’ll praise you in this storm
And I will lift my hands
That you are who you are
No matter where I am
And every tear I’ve cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise you in this storm
I remember when I stumbled in the wind
You heard my cry you raised me up again
My strength is almost gone how can I carry on
If I can’t find you
As the thunder rolls
I barely hear you whisper through the rain
I’m with you
And as your mercy falls
I raise my hands and praise
The God who gives and takes away
And I’ll praise you in this storm
And I will lift my hands
That you are who you are
No matter where I am
And every tear I’ve cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise you in this storm