BigFred

As another month comes to an end, it’s hard to believe that 4 days from now will mark the anniversary of that fateful fall that began our journey of faith.

Since our last entry, Frederick had a great INR (Blood coagulation) test. We also saw the oncologist, who was going to present Frederick’s case to the Swedish Neurological Committee on Monday, May 26th. Unfortunately however, that didn’t happen. The committee didn’t meet on 5/26 because it was a holiday! He has put Frederick’s case onto the next committee meeting, which should be Monday June 2nd. In addition, we found out that the MRI showed no change in the tumor. That’s a good thing in that it’s not growing, but it’s a little disheartnening to think that the tumor hadn’t shrunk a little bit. The oncologist also mentioned that he will be sitting in on a seminar that talks about another type of chemo that is being used to treat this type of tumor in children. Part of what makes Frederick’s case so special is that his type of tumor is usually found in children. The oncologist is hoping to get some further insight into how to handle Frederick’s case. That was a 3 pm appointment.

At 4:30 the same day we saw the surgeon, Dr. Raisis. We haven’t seen him since probably January of this year. He had not had the opportunity to see the MRI results, but quickly called an associate to take a quick look and give him an idea. The first thing he says is that the tumor has shrunk. Huh! We immediately asked for an explanation cause why does one doctor say one thing and one say another. Talk about apples and oranges. As it turns out, when they say the tumor has shrunk, they were going all the way back to August and right after radiation. In that case, the tumor has shrunk. When they say the tumor has not shrunk, they were referring to the period of time since Frederick had been undergoing just chemo. So the radiation did have a significant effect on reducing the tumor but the chemo not so much. The surgeon is now thinking that radiation with the cyberknife might been the next plan of action. He will discuss the case with the oncologist. They are giving Frederick another month off chemo and to see if anything changes before more definite plans will be made. In the mean time, the surgeon has really challenged Frederick to get busy and get his stamina up. He says he wants Frederick to be walking a mile within the next few months. So between us working personally, physical therapy and the home care aid walking Frederick, there will be plenty of good work out time. You can pray that Frederick will push through and work harder than he ever has. Please also pray that the oncologist and the surgeon will get on the same page and with Frederick’s best interest at heart, provide the best possible care that they can. We know that it’s God who is in control of all of this anyway. Your prayers with our prayers will move even cancerous mountains.

We also want to send a special thank you out to an old friend, Eleanor Walker, who has gotten her entire church on board with praying for Frederick and our family. Not only that, but the pastor has come out to visit and pray for Frederick and they even sent us a financial blessing. What a blessing in so many ways.

And last but not least, you missed a blessing if you missed us singing at church on May 18th. The best thing about it was that Frederick’s two sister’s were in town for a visit and his baby sister Sheryl sang with us. We sang a song we wrote called ” Come to Me”. It talks about how in all our trials and tribulations, Jesus says come to me all you who are weary and heavy laden and I will give you rest. That’s basically where we’ve been living this past year. Continually casting our cares on him, for his yolk is easy and his burden is light. And yes it is a continual casting of our cares because we are continually being bombarded, but each time we cast it on Jesus and he ALWAYS meets us where we are. The last line of our song says “If you come when he calls your name, he’ll soothe your pain, you won’t be the same. Let me see if I can make it plain. The Lord is sweeter than the sugar cane”. And we have found him to be just that, sweeter as the days go by!

God bless and keep the faith.
Love
Frederick and Diana Robinson

It’s been a long week, we had a great Sunday and now we’re tired…

Yes, it was a fun week with Frederick’s two sister’s, Gwen and Sheryl visiting.  They took Frederick out for lunch and to the book store on Thursday, and the four of us went to Coulon Beach for a couple of hours on Friday.  Frederick really enjoyed being out.  Today, we sang and Frederick played his guitar at church for the first time since he fell in June of last year.  His sister Sheryl sang with us and it was just a blessed time.  Believe me when I say, Sheryl can sing!  Of course, Frederick got a standing ovation and he was moved to tears for the overwhelming love and joy expressed!

Tomorrow we go back to our routine.  I will be calling some home care providers as well to get the process rolling for having someone come and care for Frederick for 3-4 hours daily (15-20) hours a week.  Please keep this in prayer, that we can find just the right person to handle this job of caring for Frederick.  We know God can do it.  He hasn’t let us down yet, through all we’ve been through.

I will try to write more tomorrow cause I’m too tired and I’m afraid I’m gonna type something crazy. 

 Blessed so not Stressed

Diana & Frederick

Yesterday we saw the oncologist after 2 months of no chemo.  The MRI showed no significant change to the tumor.  The doctor says that due to the location of the tumor we can’t just give it time to see if it grows.  He also told us that there is no way to tell how much of the mass is actually tumor and how much is scar tissue from the surgery.  Well, the idea of scar tissue was not something we had thought about before, nor were we ever made aware that this would happen.  Maybe we’re just too close to the situation, or maybe we’re still in shock and we missed it but I thought this was a significant thing that we should have known about sooner.  So though they don’t know how much is actually tumor and how much is scar tissue they do know that some of it is tumor because basically, there is a pulse.  By that I mean that there is blood flowing through some part of the mass.  Per the doctor that indicates that there is still tumor there.

So, the doctor believes that the tumor has gotten as small as it is going to get with the Temodar that Frederick was taking.  The next chemo that would be necessary would be an infusion, which is what is normally given to children since doctors don’t like to radiate children’s heads.  We were not too happy to hear this.  I pressed the oncologist a little about whether or not he had talked to the surgeon.  I still don’t see the need to go see the surgeon just to have him order another MRI and tell us that nothing has changed and that he’s not sure what to do next.  It’s a waste of time and money to me.  Anyway, the oncologist called the surgeon and of course he said make an appointment and come see him.  Again I pressed the oncologist. 

The oncologist finally admitted that there is some hospital politics going on.  It seems that Swedish Hospital when they built their new neuro section in the cherry hill building slighted our surgeon.  Therefore our surgeon does not use or cooperate with the use of the new equipment at Swedish.  But, I guess we pressed enough because the oncologist said he would present Frederick’s case to the Swedish neuro committee that was meeting on Monday.  He told us not to see the surgeon until after that committee meeting.  It seems Swedish does have another piece of neurological equipment that might give some insight to Frederick’s case and if we can get to it, then I want to get to it.  So for now, we are in a holding pattern.

On the other side of the transaction, Frederick was approved for a copes worker.  That is someone to come to the house while I’m at work and fix meals, do laundry, clean up and other things.  I thought it would be free but we have to pay a co-pay but I think it will be worth it so I’m not spending so much time running back and forth.  We just need to find someone who will be compatible with Frederick.  If you know him, you know how particular he can be.  If you know someone who wants to work approximately 3-4 hours a day 4-5 days a week for minimum wage, tell them to give us a call.

The other great blessing we received yesterday was a monetary blessing from the Women at the Well, from First Presbyterian Church in Bellevue.  It’s amazing how God just steps in right on time.  I was stressing a little about having to pay more for Frederick’s medical insurance in order to have no limit on the amount of prescriptions that would be paid on the insurance portion.  With Regence it was $3000.  We hit that target the first 3 months of the year.  So now he is with Washington State Health Insurance Program.  (WSHIP)  When I mentioned it to the consulting nurse she said “ouch”.  I thought she had hurt herself but she was referring to the medical insurance.  Anyway, I said all that to say that the blessing from the Women at the well will cover those extra expenses. 

I keep telling God that he’s not allowing me to complain.  Every time I come up with something to stress about he finds a way to bless us and provide for us and make a way.  So, I can’t complain.  God is showing us how to lean entirely on him for our every need.  He is showing us how much he loves us.

Finally, I will say we’re looking forward to singing at church on Sunday.  Frederick won’t be doing much singing because his voice is still kinda hoarse, but his sister from Atlanta will be singing with us.  That will be fun.  We’ve never done that before.  Frederick will be playing his guitar and for that I am very grateful.  Our pastor spoke over Frederick that as he continues to play guitar, this might be a part of his healing.  We sure hope so.

Be blessed!

Diana and Frederick

I haven’t posted since last Sunday just because I haven’t had the time.  Last Sunday night after I had already written to the post, Frederick had a pretty nasty fall.  He was just going to make a peanut butter and jelly sandwich.  Instead of calling one of us, he tried to go on his own and it was one of those times when his right leg just gave out on him.  He had a bruise on his back that was really bad looking.  We called the doctor on Monday and they said to just watch it and if it got really hard or started to spread to go to emergency.  It didn’t get hard and it hasn’t spread, but on Wednesday when Frederick went in to get his blood drawn, we asked again at the doctor’s office if they thought it needed to be looked at and they said it didn’t. 

On Thursday, Frederick’s INR was down to 1.9.  (Blood too thick)  They assured us it was not due to the bruise from the fall.  They adjusted his dosage so we hope that has helped.  Friday was another MRI to prepare for his appointment on Tuesday with the oncologist.  We think he’s probably going to prescribe more chemo unless there is something significant on the MRI. 

We also believe that we have been approved for the COPES program, which is having the funding to get a care/chore worker to come in a couple hours a day or so many hours a week and then I do all my hours of work at the office.  It’s become a little harder to  keep taking work back and forth.  So, please pray that the Lord will send the right person that can get along with Frederick and be a good companion for a few hours a day.  Basically the person would fix lunch, do a little laundry, possibly take Frederick to a few appointments and help him to get a little daily exercise.  We want to find someone as soon as we get our final approval.

 I had a great Mother’s Day!  My son Jerrold was suppose to cook, but things didn’t work out that way so Frederick and Ericka treated me to a nice dinner out.  We first thought it would be too crowded, but we got there at a good time and didn’t have to wait long for our table or our food.

That’s all for now.  Thank you for your prayers and concern, calls and blessings to our family.  Just when we think we’ve seen the last wonderful blessing someone else comes through in ways we never imagined.  We still don’t know who cut the grass either!

Oswald Chambers said, “Faith is not a pathetic sentiment, but robust vigoruos confidence built on the fact that God is holy love.  You cannot see Him just now, you cannot understand what He is doing, but you know Him.”  I praise God that I know Him and more than that, He knows me through and through.  Because of this, I (we) can trust him to make all things work together for our good.

Love

Diana & Frederick

Just wanted to let you all know that we had a great weekend and we found out on Friday that Commitment to Care, will be paying for Frederick’s chemo medicine. Last month it was paid for by Musicians Friend. Today at church we sang a song that said “there’s no God like Jehovah” and how true it is. Our God is so great, so mighty, so awesome. We can’t put him in a box. We must trust and believe him for everything and anything. As we go through this trial, he continues to bless us and provide for us in ways we never knew or expected. I can’t complain because I’m too blessed to stress. That doesn’t mean it’s all going my way, but it means I know where to go when the going gets tough. I’m running to Jesus. And if I do as the bible says and abide with him, then I don’t even have to run to him cause I’m already there.

Please continue to pray for our family and for Frederick specifically. He gets another MRI on Friday and then sees the oncologist on Tuesday to see if there have been any changes in the tumor. We are hoping that it has shrunk significantly and if God so desires, maybe it’s gone altogether.

Be blessed Saints of God
Love ya’ll
Diana & Frederick