Well, Jacob is still admitted in hospital for lingering lousy side effects from the chemo. His nausea is mostly gone now and he is eating and drinking again, which we are so happy to see. However, the last couple days Jacob has been getting very dizzy when sitting in his wheelchair or trying to get up to use the bathroom. His blood pressure is quite low, so he is hooked back up to IV again. We can’t seem to get through a day without needing to be attached to the huge pole! But we will try again tomorrow for the 4th time! Every day I tug on Jacob’s hair, and today he lost some so the hair loss is beginning already. He says that he doesn’t care, it’ll grow back. He’s hoping it comes in blonde. Jacob is a very practical kid. I am bursting with pride at how well he is handling all of this. No set back yet has seemed to phase him and he is just accepting of it. When I sit beside him, which is pretty much all day, I stroke his hair whenever I can. I think the hair loss may be harder on me than on him, because that will make him truly look like a “cancer kid”. It will be obvious to everyone we meet. Jacob has lost about 8% of his body weight already. He is so thin and so bony. We met with the dietician recently and she said if he gets beyond 10% loss, then he will likely need a feeding tube. We would really like to avoid this but sometimes it’s just not possible. For now, I’ll be sneaking as much butter and cream into anything I can to fatten my skinny kiddo up a bit.
Kaleb and Noah came for a visit yesterday with my inlaws. They were visited by a clown and got invited to another patients 3rd birthday party. I’m guessing they will be asking to visit us again! Children’s hospital is really amazing. There are SO many things that go on behind the scenes and so many people trying to help in various ways to ease the journey just a little bit.
The 3 boys have been away from us now for 10 days. It was difficult to watch them walk away down the hall. Knowing they don’t fully understand. Knowing they have no idea that this will be going on for a long time. Knowing their summer won’t be a normal summer at all – all holiday plans cancelled and weeks where their brothers counts are too low to risk going out in public. While I’m here with Jacob I focus on him and helping him through the lousy side effects so it’s “easy” for me to not think of my other kids during this. Seeing them is wonderful and needed, but brings heartache as well.
Many people have asked me why Jacob needs to stay for so long in the hospital for chemo. They bring up their uncle or aunt who had chemo, went in, got the bag of meds, went home the same day and even worked in between or felt pretty good! I’ve had several discussions with the doctors on this. They have explained the the amount of chemotherapy that Jacob is receiving is much more potent and way higher doses than an adult would receive. The amount that Jacob is specifically receiving would kill an adult. There is high risk of damage to kidneys and his heart and his hearing. His body needs to be constantly flushed before and post chemo to save his kidneys and sometimes these drugs are still too harsh and they need dialysis through it. They have told us to expect hospital stays in between for fever and other complications. They have told us that Jacob will need blood transfusions and platelet infusions. They have told us that Jacob will not attend any of grade 8. Osteosarcoma is very aggressive and they hit it as hard and as fast and as furious as they can. Jacob’s body will get weaker with each chemo session that happens. His bone marrow will become exhausted. He will become anemic. And so many other things…. the list is long and so overwhelming and scary.
Jacob keeps expressing that he trusts God fully. I will always encourage him in this, even when my own mind is resisting and struggling because of what is all happening. Watching Jacob’s strength is absolutely incredible. As lousy as this all is, I couldn’t be more proud to be at his side through this. We cannot change what is happening, but we can choose our attitudes and Jacob’s is a shining example so far of a positive attitude. Plus, he’s got that incredible smile!! I will end off with this text.
“But now, this is what the Lord says—
he who created you, Jacob
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
2 When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
3 For I am the Lord your God,
the Holy One of Israel, your Savior.” Is 43:1-3
We truly do believe this. This road is going to be tough. It’s going to suck. And many other words that I could use that I should probably leave out of this blog! But we cling to these promises. As difficult as this is, this will not sweep us away, this will not burn us and destroy us. We know that God has been carrying us. And we again ask for your continued prayers. 🎗