We just received an email from Dr. Anderson’s nurse, letting us know that the two medications (Temodar and Nexavar) we had decided on for Brian’s next treatment have both been approved by insurance. We were going to have our hands full figuring out how and where to get these drugs for Brian, but it seems to have fallen into place. People have so much negative to say about insurance; but I have to say, we have been so blessed by the coverage of Blue Cross and Blue Shield of Kansas City. A family member who sells insurance recently told me that BCBS is one of the best to have in a situation like Brian’s, and I can attest to that. I haven’t said much about Brian’s insurance, maybe because I don’t want to jinx anything! But I’ve come to believe that this is one of the blessings from God, put forth to make this whole journey easier. I need to be able to celebrate the seemingly little answered prayers, even while waiting for the big one to be answered.
Note to God…thanks for Brian’s great insurance.
A lot has happened in the past week. Brian (and I) rested up on Tuesday before starting therapy on Wednesday. Right away, they could see where Brian was having trouble in his leg. All muscles in his thigh were shot, and the same with his outside hip muscles.
Note to self…learn some correct anatomical terms.
Physical therapy wore him out quickly. Occupational therapy targeted some fine motor, plus the weakness in his shoulder area. They both gave us lots to do at home to get things working again like they are supposed to. He was able to do PT and OT on WThF. By Friday, he was working on balance and we saw some flexing in the tendon at the top of the ankle, which allowed him to keep his toes up. This really motivated Brian, as he could see the improvement with the drop foot.
He was fitted for an AFO, which is boot to help support his ankle. I wonder if he’ll even need it by the time it is ready at the end of the week. He ordered a wheelchair, which takes 60-90 days, and hopefully it will collect dust in our garage by the time it arrives. The company sent a loaner for now. It has been difficult to have our house filled with this type of equipment, such as a shower chair and walker. Brian’s been a real trooper.
He did venture out to a swim meet on Wednesday (post brain surgery 5 days). He was like a circus freak.
Note to self…charge admission.
I am totally kidding. Brian and I got a kick out of the curiosity of little ones. Several of them took the long way around to see just what that gash on his head was all about. One asked if he had staples, and we felt so funny because neither of us knew. He had just taken the bandages off, and the steri-stips were starting to fall off. So I looked, and there are no staples and no stitches, clearly no stitches. So I guess they superglued him, who knows? But it is a nice, clean scar, and hopefully it stays like that.
Several of Brian’s students/former students are on swim team or came to watch, and he really enjoyed visiting and shooting the breeze, while watching the girls. This was made easier with help from a friend, who loaned us a wheelchair for a few days. It went so well, that he was up for another swim meet on Saturday morning. By Sunday, he had ditched the wheelchair (briefly) and only took the walker to Mass. He had therapy again today, and he is just beat tonight, following the last home swim meet of the year. His legs are very sore, and hopefully he’ll be up for PT again in the morning.
We were scheduled to go to Columbia today, just to see the surgical oncologist concerning this area on Brian’s back. It is looking good, and Dr. Miller took my word for it and let us cancel and just come next week, when we’re planning to see the other two doctors.
We continue to pray. I’ve tried so hard to change the way I pray. It is so easy to pour on the prayers when we need something. Yet, we so easily forget to pray in thanksgiving. I won’t ever stop telling God what we really need, how we desperately need Brian’s body to be healed of melanoma, how we so hope and pray for a long future together.
Note to God…now would be good.
But I’ll be honest. That prayer just hasn’t been answered yet. I choose to never give up believing one day God will indeed answer our prayer. I know someday Brian’s body will be free of this ugly beast, and I just pray for God’s mercy that it be while he is still on earth and we can share many years ahead of us.
So until then, I’ll keep reminding, talking, begging, pleading, reasoning with God to lay His healing hands on Brian. I entrust Brian’s health into the Lord’s hands. For a while, I felt like that was all I was praying for. Then I came around to realize that I had the energy and endurance to pray diligently for Brian’s health, and for everything else I can think of.
So here goes…for Amy Wilhoite to find a doctor who will do a second transplant. And as long as You are answering prayers, she could use a cure for her leukemia. I also pray for so many others who suffer from melanoma, so many stage 4’ers. You might think melanoma is rare, but it isn’t. Maybe it is rare for your life, or for the people you know, but it isn’t rare, and yes, it DID start as a mole. I pray for so many, suffering from conditions that affect their bodies, conditions that affect their minds, conditions that affect their marriages or jobs. We each have a cross to bear, and I pray for you all to have the strength to carry your cross.
Note to self…buy a cart to pull our cross because it keeps doubling in size.
Note to God…I’ll carry the cross myself if you would just make Brian better.
Note to God…thanks for Brian’s great insurance.
A lot has happened in the past week. Brian (and I) rested up on Tuesday before starting therapy on Wednesday. Right away, they could see where Brian was having trouble in his leg. All muscles in his thigh were shot, and the same with his outside hip muscles.
Note to self…learn some correct anatomical terms.
Physical therapy wore him out quickly. Occupational therapy targeted some fine motor, plus the weakness in his shoulder area. They both gave us lots to do at home to get things working again like they are supposed to. He was able to do PT and OT on WThF. By Friday, he was working on balance and we saw some flexing in the tendon at the top of the ankle, which allowed him to keep his toes up. This really motivated Brian, as he could see the improvement with the drop foot.
He was fitted for an AFO, which is boot to help support his ankle. I wonder if he’ll even need it by the time it is ready at the end of the week. He ordered a wheelchair, which takes 60-90 days, and hopefully it will collect dust in our garage by the time it arrives. The company sent a loaner for now. It has been difficult to have our house filled with this type of equipment, such as a shower chair and walker. Brian’s been a real trooper.
He did venture out to a swim meet on Wednesday (post brain surgery 5 days). He was like a circus freak.
Note to self…charge admission.
I am totally kidding. Brian and I got a kick out of the curiosity of little ones. Several of them took the long way around to see just what that gash on his head was all about. One asked if he had staples, and we felt so funny because neither of us knew. He had just taken the bandages off, and the steri-stips were starting to fall off. So I looked, and there are no staples and no stitches, clearly no stitches. So I guess they superglued him, who knows? But it is a nice, clean scar, and hopefully it stays like that.
Several of Brian’s students/former students are on swim team or came to watch, and he really enjoyed visiting and shooting the breeze, while watching the girls. This was made easier with help from a friend, who loaned us a wheelchair for a few days. It went so well, that he was up for another swim meet on Saturday morning. By Sunday, he had ditched the wheelchair (briefly) and only took the walker to Mass. He had therapy again today, and he is just beat tonight, following the last home swim meet of the year. His legs are very sore, and hopefully he’ll be up for PT again in the morning.
We were scheduled to go to Columbia today, just to see the surgical oncologist concerning this area on Brian’s back. It is looking good, and Dr. Miller took my word for it and let us cancel and just come next week, when we’re planning to see the other two doctors.
We continue to pray. I’ve tried so hard to change the way I pray. It is so easy to pour on the prayers when we need something. Yet, we so easily forget to pray in thanksgiving. I won’t ever stop telling God what we really need, how we desperately need Brian’s body to be healed of melanoma, how we so hope and pray for a long future together.
Note to God…now would be good.
But I’ll be honest. That prayer just hasn’t been answered yet. I choose to never give up believing one day God will indeed answer our prayer. I know someday Brian’s body will be free of this ugly beast, and I just pray for God’s mercy that it be while he is still on earth and we can share many years ahead of us.
So until then, I’ll keep reminding, talking, begging, pleading, reasoning with God to lay His healing hands on Brian. I entrust Brian’s health into the Lord’s hands. For a while, I felt like that was all I was praying for. Then I came around to realize that I had the energy and endurance to pray diligently for Brian’s health, and for everything else I can think of.
So here goes…for Amy Wilhoite to find a doctor who will do a second transplant. And as long as You are answering prayers, she could use a cure for her leukemia. I also pray for so many others who suffer from melanoma, so many stage 4’ers. You might think melanoma is rare, but it isn’t. Maybe it is rare for your life, or for the people you know, but it isn’t rare, and yes, it DID start as a mole. I pray for so many, suffering from conditions that affect their bodies, conditions that affect their minds, conditions that affect their marriages or jobs. We each have a cross to bear, and I pray for you all to have the strength to carry your cross.
Note to self…buy a cart to pull our cross because it keeps doubling in size.
Note to God…I’ll carry the cross myself if you would just make Brian better.
Note to self…don’t bargain with God.
It is a hard concept. Sometimes I think if we do this better, or we promise this, or we stop doing that, it will change what is happening. People ask me all the time how we hold up. Believe me, we have our moments. But as I’ve come to realize, questioning your faith, struggling to understand, being mad at God, even bargaining sometimes…these things are all a part of the journey of the faithful, not the faithless. For whatever reason, God has a plan, and this is part of our journey. I believe one day, when I’m with God in Heaven, He’ll reveal to me why this all happened. I hope that is true, because I have some things to discuss with the Big Guy, face to face.
Note to self…make a list.
I’ll admit, we’ve done a lot of questioning lately. Sometimes it starts to feel like our faith is wavering; then we remember how easily the devil can slither in and take advantage of weaknesses such as these, and we fight harder with prayer, which brings us that much closer to God.
Note to self…maybe I’ve just figured out part of why this is happening.
I hope you all are enjoying a fun summer. Ours has stunk and been wonderful, depending on what part you are talking about and which perspective. You know the melanoma saga, so I’ll end with the good part. The girls have had fun, and this week they are going to basketball camp at Northwest. I’ve also enjoyed spending some very special time with Brian, and we’ve enjoyed being together at home with the kids when we can.
Peace,
Jenni
I can do all things through Him who strengthens me. Philippians 4:13
3 comments:
note to self.....try harder to count my blessings as Brian and Jenni do
note to God....ditto on everything she just said
Jenni and Brian, you are both a true inspiration to me and countless others!!! I know your journey has been long and hard but I also believe that God has great things planned for all of you! Keep the faith and keep praying, bargaining, screaming, hoping or whatever it takes! And please know that I continue to keep all of you in my daily prayers. Deb Schuster
Jenni & Bryan
I pray everynight that God will grant you the long life together you deserve, I pray for your strenght and understanding in all that you deal with. You both are amazing people with a great strenght. keep fighting this beast and keep your faith in God.
Glenys
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