Sunday, November 29, 2009

Prayer requests for this week

Thought I would share with you how you may pray for us this week.

1. Wednesday, Ron is scheduled for several tests... blood tests and scans... the special test I am excited, but a little nervous, about is the PET scan. This will tell us if there are any visible areas of malignancies. The next PET is supposed to be 6 months later. Pray the Lord's will be done.
2. I am going to try to schedule surgery to remove my thyroid nodule. Last week, I drew the line, and said NO MORE! Pray that the surgery can be schedule soon, and that the specialist I see will hook me up with an excellent surgeon. It shouldn't be a big deal, and may be like a one night stay in the hospital.
3.Ron is going to be hunting some this week... with friends. He will pace himself, but he is hoping to get at least one deer. I hope he gets a big buck! His friends will help him with the dragging, etc., of the deer. I am happy for him, that he is getting to get out and do something he enjoys and that he has someone with him. He is doing so well lately. The complications he has had seem to be all under control. Yeah! I know it sounds funny, but you could pray he shoots a deer and that God will keep him safe.

It is an exciting week for us, and I am looking forward to sharing with you all answers to your prayers :-)

Happy to say that I see a light at the end of the tunnel... still not sure where it is leading, but I am learning not to be afraid, but pray... slowly, but surely!

Saturday, November 28, 2009

We Made It!

Here is a glimpse of the last couple of days. I started decorating for Christmas.
Thanksgiving at my grandparents... it was so much fun. We had lots of "survivors" there... we nearly lost several members of my family this year, and it was wonderful to be able to sit together and fellowship and count our blessings that we had each other this year at Thanksgiving. It was a beautiful family reunion.

My beautiful Grandma... I just love her to pieces... one of my daughters has as a middle name my Grandma's first name... Ruth. I also love the wonderful Ruth from the Bible, so there were two reasons I named her Charity Ruth.


My beautiful sister and my Aunt Kathy with me sandwiched in the middle. Aunt Kathy, I was sooo glad to see you and that you are doing so much better. My sister, Rachel, and I were like best friends growing up... we are crazy when we get together.

Monday, November 23, 2009

Give praise

Thanksgiving is only a few days away, and I have so much for which to be thankful.
1. God, the Father, who created all things... and, He did it well! All you scientists and researchers of our universe and its inhabitants, say a hardy "Amen"! It is awesome! And, for His amazing love shown through His Son.
2. God, the Son, Jesus Christ, for sacrificing His life to redeem the human race. It is the most amazing love story I have ever heard! If you do not know the story of what He has done for you, you need to read about it and experience it... you will not be disappointed... for this love story has the most awesome ending... actually, it has no ending!
3. God, the Holy Spirit, for showing to me the darkness of my heart and helping me to "clean the closet." For leading, guiding, and comforting me.
4. For my husband, who loves his family and is very responsible... who loves God, is giving, and perserveres.
5. For my three children that God has given us to raise, train, protect, nourish, and love.
6. For light... in my soul... showing me what needs to be done, and what is right.
7. For a warm, dry home, safe and comfortable.
8. For the body God gave me to use for His glory... may that sink into my mind!
9. For God's Word... the ability to read it.
10. For a mind to think.
11. For my church and the freedom to choose it.
12. For friends and family who love, respect, and support us.
13. For forgiveness.
14. For being able to pray straight to the Lord whereever I am, whenever I want to, and that He hears me.
15. For good books.
16. For clothes and food.
17. That God does not lie, and that He is goodness and holiness.
18. That nothing is impossible with God.
19. That I can trust Him completely... He isn't going to mess up.
20. That my hubby's blood counts are looking really good, and that, although he has some hurdles yet to jump, things are looking up. I think I might see a little bit of light shining at the end of this tunnel... not sure where it is leading to... but, I know there is an end somewhere... we just got to keep PRESSING ON! But, not in our own strength, or we will fail before we get there... I realize that... it is a daily, moment by moment choice to hold Jesus' hand or try to wonder in the darkness by ourselves. As for me, I know I must have Jesus!
Give praise! Let all who has breath praise the Lord! Thank You, Jesus! Please, hold my hand, cause I really need You right now!

Saturday, November 21, 2009

God is on the move...

in my heart. Oh, I am not saying that things were great today... but, I am submitting more. Submitting more to God, my husband, and listening and reading and learning more... because I am so ready to be done with fighting with God. He has me! I don't know what the future holds in our family, and I am tired of trying to be "God" and figure it all out. There is so much more peace when God is allowed to be God. Ron is His. If He wants to take him, then that is what is good... because God is good, and does not make mistakes. If God chooses to heal Ron, then that is good... and, I know He can, but I also know that God's ways are not our ways, and He sees the finished puzzle when we only see odds and end pieces. God allowed me to marry this fantastic man, though I don't know why... I haven't exactly been the best wife, but I am honored. He has been so very brave, and has done so very well through all of this. He just keeps marching on, sharing God's love and doing what work he is able to do. In fact, he is hoping to get back to work by the end of January, and knowing Ron, he just might do it... I might be surprised if he doesn't do it. He really is doing well, even with the numerous problems that arise... it is like he is just jumping hurdles, one comes, he jumps... another comes, and he jumps again, and he even laughs along the way. I am proud of him. Keep jumping, Ron! You're doing a good job! I love you!

Surrendering

I am changing my blog tone a bit, so I have erased some info that I had put on here. It is part of my surrender to Jesus right now. I have been ignoring Him, I guess you could say. I repented the other night here at my house. My attitudes, thoughts, and desires were not Christ-like and it had much to do with my lack in prayer and consistancy with studying the Scriptures. God is meeting my need as I surrender my desires and hopes to Him. It sure feels better than trying to figure it out myself. Praise God!

Tuesday, November 17, 2009

Today...

Ron's doc added some heart med to his list of meds today. His counts are going up... hurrah!!! Platelets have really climbed! Very happy about that.
The girls and I had fun today at the park here... it was so refreshing to watch them playing outside and hearing the birds, etc.

Sunday, November 15, 2009

Heart problems?

Ron was discharged today, but he still needs tests and stuff. A doctor came and saw him today, and said he believes Ron has PSVT... paroxymal supraventricular tachycardia.
Pressing on!

Saturday, November 14, 2009

911

I don't much feel like explaining all that has happened in the last 24 hours, but it was frightening. To make a long story short, Ron over-exerted himself scrubbing down and power-spraying our mobile home today (or should I say yesterday, since it is past mid-night), and quickly, it seems, something came over him, and his heart went racing. He came in the house, poured cold water over his head, had me get him water to drink, tried sitting down, laying down, whatever he could, and didn't want me to leave him... felt his heart racing and his chest was tight. Anyway, an ambulance was called and when they checked his heart rate, I believe it was over 230, and they couldn't even get a blood pressure!!! Off they went to a hospital I didn't even know how to get to, but it was the closest. They had to give him some medicine to slow it down at the hospital and it worked the first time. I think it was around 215 at the hospital. They got it calmed down, but later took him to The James Cancer Hospital, where he is right now... room 361. They've done some testing, and I guess some enzyme is up a bit, and they are going to test his heart some more tomorrow... if nothing too serious shows up, he might get to go home tomorrow.
Get this, the ambulance or whatever it was that transported him from Dayton to Columbus hit a deer on the way there, then the battery died on the machines that were monitoring him, and they had to have another vehicle meet them with a new battery, then I think they got a little turned around by the hospital or something. Ron thought is was hilarious! He joked about them giving him the deer meat, and he would buy them a burger... ha! Obviously, they couldn't do that... but, at least he could have a sense of humor.
That is the new news here.
Pressing on...

Tuesday, November 10, 2009

It is normal

That is what Ron told me the doctor said today. He said he was only grade 1 in his Graft-versus-Host, and that the steriods ought to help that. Ron acted like it was no big deal to the doc right now.
The kids are fine. Faith is doing school late this evening. Charity got clobbered by a heavy praying hands decoration last night while playing "tent" in the living room (sounds funny, but you know how even tiny head injuries bleed). Hope got a mega-scratch on her back yesterday, but she is amazingly resilent. Then today she was sitting strapped in her booster-seat and pushed it backward by pushing the table with her feet and over went the chair, baby, and all. I sat her up chair and all, and she got over it quickly, but she could have really gotten hurt. I forsaw that coming because she has been tipping her chair lately... and, even though Mommy's warnings didn't seem to help, maybe the memory of that moment may help keep her from doing that... we'll see.
You would not believe how many words Hope has learned in the past few weeks... it is shocking! I am excited! Then, Charity is just getting to be so fun to have around... she is just so cute, except for that whiny scream she gets... especially when she is very tired. Faith is maturing so much, you can definitely tell she is past the pre-school mind, and can figure things out quite well. She loves to tell stories, make up songs, ask tough questions, be the boss, and we are having a new level of "issues," too (seems to be issues of the heart that need dealt with). She is sensitive, as well as one who has a strong personality... she likes to be the leader of a group. She once was bossing a group of kids at a playland and then told them her mommy would buy them prizes... WHAT!? Like I can buy a huge group of kids treats! She is a character! She was setting me up!
Well, that is all for now... our "normal" little life here... keeping busy, and trying to have fun along the way... and, apologizing when needed.
Pressing on.

Monday, November 9, 2009

Ron update

Well, after today's appointment, Ron came home with two more meds, one being the standard treatment of GVHD... prednisone.Where do you think Ron is right now? Hunting! Well, really, he is sitting in someone's little hunting building where he can turn on heat, and is near their home.
He called some of his bus route on the phone the other day to check on them, and let them know he still cared about them, even if he wasn't the one picking them up right now. He found a teenager that moved and picked him up Sunday night... that teen is a great kid to keep and so sweet, and he lives on the way to our church! We still have one girl teen we continue to pick up some, because she only lives 5 minutes from us, but small children are too risky for us to pick up because they are the "germy" ones... bless their hearts, it is a fact, I guess, since Ron has to avoid them... except ours, who are homeschooled and sheltered here in our home. Ron misses those precious little children he used to pick up. They were special to him... to all of us. Faith looks at some of them as her dear friends... I have to watch her though, she wants to share stuff with them, even their lipstick stuff... now that is a fast way to share germs both ways!
The other day, he and some guys went and washed and later waxed the church bus. Looks beautiful! A few days before that, he cleaned out our shed.
He is doing the things that are on his priority list. I am proud of him for his efforts and hard work even though his strength is small, and the future uncertain. He is a dedicated man and wonderful husband.
I am clueless about many diseases and treatments, but I have been learning much, because I like to study them on my own. These things mean much more to me now than when I was a very young gal in nursing school, studying it, thinking it was a cool thing to be a "nurse." Patients were an assignment to me, a job, something to talk about. I was sooo immature and petty. Those poor people needed deserved much better than my half-hearted efforts and my sleeping in class and clinicals. If I were to become a nurse now, well, I would show them respect and I would truly understand so much more how they must feel... they and their families. Life is not a joke... something to take lightly... Jesus proved that one day when He gave His all for us. He didn't look at us half-heartedly, like an assignment, a job to hurry up and get over with... and, I am forever grateful. I had that sin disease, and Jesus, the Great Physician, had the cure, but He gave everything He had to get it for me. Thank You, Jesus... for everything... help me not to forget or ignore what You have and are teaching me.

Saturday, November 7, 2009

No cell phones right now

If you want to reach us you will need to call our home number right now. We are not using our cell phones right now. If you want our number, email me. Thanks.

Friday, November 6, 2009

correction

Actually, it was the bloodwork that showed it was grafted in, the results of the bone marrow biopsy will not be back for probably a couple of days... but, it should confirm the findings in the bloodwork that the graft took 100%.

100% Grafted!!! WELCOME TO THE NEW MARROW!

GOOD NEWS FROM THE COOK HOUSE! THE DOUBLE UMBILICAL CORD CLINICAL TRIAL IS WORKING SO FAR! They did the bone marrow biopsy today, and Ron called to tell me that they said one of the umbilical cords is grafted in 100%!!! YES!!! Only one can completely graft, not both. It was enough cells! How cool is that! Thank you to the mother who gave her baby's umbilical cord instead of throwing it away! He had no adult matches, and your donation gave new hope in Ron's fight for a cure. Not sure what could have been done if it hadn't grafted in... not sure I want to think about it.
They are still waiting for the results of the skin biopsy to see if his new cells are trying to fight against Ron's body in GVHD. They are hoping to keep it under control. So far, he is doing pretty good, most obvious problem is that rash. Sometimes GVHD can do good things, you know, as it goes against other cells, it can attack any remaining cancer cells, too. So, you see, it is not all bad. Keep praying for us... the good news today gave a boost of hope here!

Thursday, November 5, 2009

What?! Chicken in crackers?!

We made a mistake. We bought these yummy ranch snack crackers and were enjoying them when Ron suddenly had a question... Is there chicken in this? Sure enough, those flavored crackers had chicken in them! Ron could feel the allergy starting. In went the anti-histamines and lots of fluids and food to try to dilute the chicken. He is now asleep. Why weren't the crackers called Ranch Chicken Crackers or something?! How would you have even known, unless you are into reading all labels of every food?

The man with the mask

Where is my rope to tie him down? He is out driving around, running errands, and doing his busy work. He got permission to drive, and he glad. So, if you see a man with a toboggan (sp?)hat and a duck billed mask at a gas station or something, that just might be my man.
Sometimes I wonder what people are thinking when they see him walking around our mobile home park or when he went to vote the other day with hardly anything on his face showing except his eyes. Who is this energetic guy with the mask? That is my husband who is itching to get busy.

Wednesday, November 4, 2009

Biopsy


They took a biopsy of Ron's skin to check for GVHD, as they do believe that is what it is. They raised one his immune suppressants again (they had lowered it... I call it the "skunk pill" as that it about what it smells like) and he has to put on a steriod cream. Hopefully, that will take care of the problem. We should know the results of the biopsy in a few days. He has a bone marrow biopsy on Friday scheduled... yuck! The bone marrow biopsy will tell if the graft took into the bone marrow as it should have.

Guess I want to have empathy, too, since I also have a rash... not sure what that is about... my guess is caffeine or allergy or Rosasea. Oh, well, that is nothing compared to Ron's situation. I just miss my clear complexion... I was spoiled with nice skin on my face until recently... now I am red and blotchy and have weird hot flashes... but, there sure are more important things in life than perfect skin... like my precious husband's life.

Please, keep praying for him. GVHD can be life-threatening, and I don't really know how to deal with this, but watch and pray and try to think right. We didn't go to church tonight for safety reasons, because of Ron's immune system and all the ill people in our congregation.

Excuse the laundry in the above pic... it is an endless job, ya know. :-)

He is going to the hospital

He should be there by now. His dad has been his transportation to and from the hospital. They wanted him to come in this morning to be checked for Graft-Verus-Host. The rash is worse this morning, so he has to be checked. If it is, they will likely add steriods to his medication list. I am pretty certain it is GVHD, but I am not a doctor, of course.
Will plan to let you know after I find out what the docs say.
Ron's wife and home nurse,
Sarah

Tuesday, November 3, 2009

A Ron Update

Well, last week, he had 2 transfusions... one platelet and one red blood cells, and they gave him some Neupogen once for low white blood cells. A few days ago, he developed that platelet rash, petechiae, apparently... it was on his feet mostly. They didn't seem too concerned about it... guess it must be a common thing. Tonight he just developed a rash across his face, on his upper chest, and I think it on the top on his head, too... not sure if it is from this perfumy soap he grabbed off the sink to wash his face earlier or what. He thought it could have been from the fluids they gave him earlier today because of his increased creatin levels... but, after he called the nurse, we know it is not likely that... he took a Benadryl, and I will check him in the night for any spreading of the rash... the worst thing it might be is probably the dreaded Graft-Versus-Host disease (rash is one of the symptoms). I am paranoid about it, I guess. Acute GVHD can come on quickly and can range from a mild to a severe reaction. It may be different than some other transplants that have rejections in that it is the donor's cells rejecting YOU not necessarily yours rejecting the donors... so the symptoms may be different in that way. Let's hope my imagination is just getting the best of me, and that this is nothing serious. Ron is sensitive to alot of things, after all.

Monday, November 2, 2009

Cool, modern, and educated children



The computer activity Charity is enjoying was a gift from Mimi for Faith's birthday. It is really pretty cool... I have even used it for Children's Church purposes.
Faith is, of course, doing her schoolwork in the above pic.
Hope was just very silly today.
Shhhh....
Can you keep a secret? I found one of my very desired Christmas presents for Faith today. I mean, what do you buy for children who have enough clothes to supply a female orphanage, and enough toys for a daycare? And, how do you buy gifts when neither you or your husband is working? Well, there is a way! You pray! I found a VERY NICE bicycle at a thrift store and it was 25% off day! So, for only about 17 dollars, my daughter now has an almost new looking bike with nice tires awaiting her in the shed... it is quite sharp! Another gift was purchased on-line for about 8 dollars for all of the children to share... it is a Your Story Hour album (history). The girls are going to LOVE IT! They love Your Story Hour... ten hours worth of stories! It was a very good sale! They are cassettes, so we'll have to watch out having them near Hope... she likes to pull them apart... the other kids did, too, at this age. Now, I will just have to find something special for the other two. They don't need much, and I don't have room for much, but I think I have some ideas of what would bless their little hearts! It is fun making those little girls happy.