Missed It By *That* Much

Missed It

We were so close…

Post-transplant you’re seen in the SCCA clinic every day. We go in for labs first thing in the morning and then see our team about an hour later, when they’ve had a chance to review the numbers. They check in to see how Corey’s feeling and make whatever adjustments may be necessary. For instance, last Wednesday he was borderline dehydrated so they kept him in the clinic for a few hours of IV fluids. His numbers weren’t much better on Thursday so they ordered IV fluids for us to begin administering at home. By Saturday he was still dehydrated (with an elevated heart rate) so they increased the IV fluids and added some potassium, magnesium and phosphates (rather than normal saline).

As a caretaker I’ve been challenged this past week to find the right balance between, “You need to drink more and swallow these pills, whether you want to or not!” (think Nurse Ratched) and “I’m sorry the thought of swallowing these pills makes you want to throw up what little you’ve taken in today, but you really need to get these meds down. It’s for your own good.” (think a Disney fairy godmother). And while I’ve tried my best, and I know Corey has tried his best, we didn’t quite make it through the week before the team had to intervene.

Every day that we’ve been in the clinic this week, the two awesome ladies at the front desk have told me they can tell Corey’s working through the hardest part now. Everyone in the clinic knows Corey by name. He’s the spunky guy, the funny one, the life of the party. And post-transplant he’s trying so hard to be spunky and funny, but you can see that he just doesn’t have a whole lot to give. They told me that every morning they wonder whether this will be the morning they don’t get to see “Mr. Grant” because he ended up having to be admitted to the UW Med Center.

Well, Thursday morning was the morning we didn’t show up because Wednesday night he ended up having to be admitted.

We were so close…

He made it all the way to “Day +9” before having to be admitted, which is pretty good. Every single day our team has commented that he’s ahead of the curve because he’s made it this far without being admitted. They also tell him, every single day, “Please don’t be a hero or a martyr. If you need to go in, go in!” Even though they’ve had to increase his IV fluids and we’ve had to push the limits of what he can eat and drink on his own, we’ve been able to manage it and do what needs to be done to stay out of the hospital. The one thing we couldn’t control, and the thing that got him a golden ticket, was a fever. If you have a fever over 100.4 for more than one hour, it’s an automatic admission. It’s something they don’t mess around with and can’t take a chance on.

If you’ll remember, Monday he had “70 lonely neutrophils” (or white blood cells) and was on his way bottoming out at zero. Tuesday’s labs showed he had 10 lonely neutrophils and Wednesday he officially hit zero, which is actually good because the only direction you can go from there is up! With zero neutrophils/white blood cells you just have no immune system at all and fevers can hit pretty suddenly. It’s actually pretty common so when his fever began at 99.8 Wednesday morning in the clinic and crept up from there, no one was surprised that by 5:00 it was 100.7 and they were calling UW to prepare us a room.

Corey was pretty bummed about being admitted. He tried really hard to do everything he could to make it through at home. And while I understand, I really do, I honestly was a bit relieved that he was being admitted. His fever hit 102 on Thursday, even having been on IV antibiotics overnight, and that’s something I would not have been able to control at home. It actually brought me great comfort knowing he was getting the fluids he needed, he wasn’t going to be perpetually dehydrated, his heart rate was going to slow down and they were going to be able to give him his meds intravenously so he wouldn’t have to swallow the pills he’d begun to dread swallowing.

The mucositis has begun to interfere with his ability to swallow, to eat and drink. It’s not painful per se, it’s more uncomfortable and just really bothersome. Chewing the ice chips during the “atomic bomb of chemo” really did help keep the sores out of his mouth, but remember that it affects the rest of the GI tract, meaning from his throat down had the sores and soreness. I’ll spare you the details and just say that it’s been difficult getting him to eat, drink and swallow his pills. It’s been hard for me to make him do something I know he can barely bring himself to do. So, having him admitted and allowing them to use IVs to do the heavy lifting of what his body needs right now has been a big relief to me, as his caretaker.

Once you hit zero, you level off there for a few days while your body tries so very hard to begin reproducing new, healthy blood cells. It’s called engraftment, and that’s likely what his body is going through right now. Engraftment is when the cells you received on transplant day start to grow and make healthy blood cells. It’s an important milestone in your transplant recovery. However, since these new blood cells are, well, new, your body can potentially see them as foreign agents and try to fight them off while they’re trying to take root and grow. If all of his labs come back showing no sign of a bacterial infection as the cause for these fevers, it’s likely that this process is what’s causing them. And, actually, it’s a reason to celebrate!

Thursday he was still fighting the fevers and his white blood cell count was still at zero so he ended up having to have a blood transfusion. This is completely normal; practically no one makes it through from transplant to engraftment without at least one transfusion, and usually multiple ones. It’s highly likely that he’s bottomed out at the lowest part of the transplant process and that his body is fighting hard to work its way up. Again, this is good news and cause for celebration!

Having Corey admitted and knowing he’s being taken care of by a world-class team has also given me the chance to go home and spend a couple days with the kids. I am so very proud of how they’ve handled all of this. They are such troopers and they’re so strong and resilient and I just could not be more proud of them. I got a text from Abbie’s teacher Thursday night saying that she was the first person in her class to get on the “Wall of Fame” for a certain math marker and that she got a 100% on her Unit 3 Final. She said that Abbie had such a great attitude at school and that she was really amazed at how she was handling all our family was going through. I’ll tell you, it’s those moments that you just have to stop and say a prayer of thanksgiving that the Lord has been walking with those kids every step of the way, just like He’s been walking with Corey and me. I want our whole family to come through this stronger, with a deeper faith and trust in God than we had before, and that text brought such joy and peace to this mama’s heart.

Corey will likely be in the hospital for a few days. When you’re admitted with a neutropenic fever they won’t release you until your white blood cell count is above 500. With it still being at 0, we have a ways to go. And while he’s being taken care of physically, I know this is hard on him mentally. He really wanted to be in that 15% of patients who skated by. I think we both know he’s right where he needs to be, but so much of the recovery process goes beyond what’s just happening with your body. So much of it is what’s happening in your mind and spirit too. I have never once prayed for Corey’s body when I haven’t prayed for his mind and spirit as well. If you think about it, join me in that prayer, would you? He is strong and he has handled all of this well. But I don’t just want him, or any of us, to come through this by the skin of our teeth. I want to come through this better and stronger and with a deeper walk with the Lord than we ever would be/have otherwise.

We have a long way to go, but I think we’re on the road to recovery. I’ll let you know how it’s going and how he’s progressing, but for now I’m going to rest in the fact that we are all where we need to be and that this hospitalization didn’t take the Lord by surprise. Our prayer now is that this pitstop doesn’t delay our coming home at the end of the month. We’re praying that once his counts start to go up, they’ll just keep going, going, going. Our goal is to be home and reunited as a family by December 1. Pray for that with us, would ya? Many, many thanks. ❤

6 thoughts on “Missed It By *That* Much

  1. Our devotions this morning keyed on Lamentations 3:22-23: The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. Written midst a litany of trials and hard times comes the realization that the Lord is with us each day with His faithful love and mercies. We continue to pray for all of you, body, mind and spirit. Thank you for keeping us apprised of Corey’s progress.

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  2. I don’t understand why the big push to keep him out of the hospital when for so many reasons it was better for him to be there. It’s not a failure on his part. His defenses were destroyed and a bad bug got in. It was inevitable! But they’re giving him the tools to fight it off now! Being solely responsible for his care is such a huge responsibility and can drain you on so many levels. You’ve been given the chance to take a break and get refreshed so that you can go back there and hit this head on with him again! And because he’s on IV’s it’s giving his system a chance to recover, too!
    Oh how I’m praying! Lifting your whole family up to the Lord!
    Psalms 54:4 Behold, God is mine helper: the Lord is with them that uphold my soul.

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  3. Our help comes from the Lord God Almighty! Praying to Him on your behalf right now!
    Psalms 121:1-2 I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the LORD, which made heaven and earth.

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