another chapter

This seems to be a good way to reach most family and friends at the same time without being on the phone all day!

Well we thought we were heading to Chad's usual Dr. apptioment, just an infusion of the Tysobri medicine. Tysobri has been more then amazing. It's given Chad his life back. It's given me a husband back, it's given him the ability to keep working.
There has always been the scare of PML. It's a brain infection that some people get while taking Tysobri, the Dr.'s really don't know why or how some get it, but they know that anyone at any given time can get it. If you are one of the not so lucky ones to get PML it means you can die from it.... they have come a ways with this though and found a full blood transfusion saves lives, drain the persons blood, while pumping new blood into the body.
We never wanted to go through any of that, but it is was a possibility and we knew it.

Yesterday Chad got to the MS Center for the infusion. His nurse Christi asked him if there was anything new lately and so on. Chad said, "Well yes, actually there is. I've been feeling not so good lately. A lot of my old symptoms have come back, only this time I'm more numb and weak."
Christi was writing this all down and told us she'd be right back.

She came into the infusion room a few minutes later and told us that she talked to Dr. Cooke and he wants an MRI taken today. She said they want to be safer then sorry and wanted to be sure he has no PML .
They went ahead and gave Chad his 32nd Tysobri infusion. Set up a MRI for 7:30pm. They wanted it of his spine, brain stem, and brain, so it would take an hour and a half to get it all done.

And the one time we take the kids with us!! That worked out lovely, Grandma and Grandpa had appointments that day in Spokane as well and they were still in Spokane by the time we realized our plans had changed!! Yay! So glad the kids didn't have to be gone the whole day with us! They would've been so bored!

So Chad got the MRI finished and we headed home and went to bed more then exhausted from the busy long day. Our spirits were up though, we felt Chad didn't have the PML.

The Dr. called us first thing this morning. He has been amazing through this! Very quick and no wait time, it feels nice cause you feel he cares, but at the same time it worries you because he is caring so much and it's on his mind!
He said he can't tell for certain if there is no PML, but he doesn't think so, the Dr. set up paperwork and such for Chad to get into Sandpoint laboratory to get more blood drawn and a urine sample to make sure.
The Tysobri isn't working for you anymore, you have new lesions.
ouch.
The meds that have given us a way to "deal" with this yucky sickness, gone.
Tysobri is one of the most powerful drugs against ms, so taking that away is scary. It's also scary thought that Chads ms is that bad. The Dr. thinks the meds would be doing the trick for him still if his body allowed it to, but it's looking like Chad's body has made antibodies against Tysobri.
We will know a little more once we get the test results back.
In the meantime we have to stay focused on God. If we don't, then our trials and sorrows will be much worse and no point in them. We know God has a plan, we just need prayers to stay focused and keep our spirits strong.
My prayer requests:
*Please pray mostly for Chad. This is the guy that likes everything but sitting around, Tysobri helped him be able to move more, now that's taken from him.
*Pray for the Dr.'s that are working this case, Dr cooke said he and other Dr.'s are going to put their heads together on this and try to figure something out.
*Pray that we will have wisdom in picking another drug out. There is a ton of cons to the other drugs as well. Also, we don't know when Chad can be on another drug, we have to wait awhile till tysobri is out of his system, or he really could get PML!
*Pray for Chad's job situation. We have to decide if he should go on disability for awhile, or try to work through this, it could be a long road with new meds and new side effects and so on.
*Pray Chad and I both can be a good example and proof of God's amazing love for His children. And that no matter how rough this life here on earth can get, that we will praise God for the blessings we do have.