This past Sunday I had the chance to share my story at church. Here is the link to listen to it...
http://restoresby.com/teachings/
It is labeled "Ryan's Story"
I hope it encourages you as Christmas draws near.
Friday, December 20, 2013
Sunday, December 1, 2013
A thankful heart
As I sit with my beautiful wife and amazing son (and my awesome daughter), I can't help but think of all the things I have to be thankful for. Not only do I have a great family but today (and last night) I was surrounded by my parents and brothers and sisters and niece and nephews and friends that have been around me to celebrate another year in the books.
As I enjoy my birthday I thank God that I am still here to enjoy His creation.
Just a few days ago many people gathered with friends and family to celebrate thanksgiving. I had the joy of stretching it out an extra day, we area very thankful family. I was able to spend the days eating good food, playing some football, and hanging with friends and family.
By now many people know Meagan had a sonogram last Tuesday and we were able to see our pretty little daughter- Hope Victory Twilley. We are excited for the spring when we get to hold her. At first Life was a little upset because he thought the baby was a boy. After some explaining he came around to the idea of a sister, he even refers to her room as "Hope's room". He is going to be a great big brother.
Going back a few more days to Saturday, I was honored to have a second benefit thrown for me. Thank you so much Stacey, Meghan, Suzanne, and Caty. You all did a great job getting together such a great auction and show! I was blown away by everyone coming out to show support.
On top of all of this, as if my heart wasn't full enough, I got some results back from my last checkup. This test counts the number of cancerous cells in my blood, in august this number was 900 something out of 1000. After only a couple months of my new med, the number is now down to 15 out of 1000. This is a huge improvement! I am thankful that God is allowing things to improve and I look forward to seeing what He is going to do next.
As I enjoy my birthday I thank God that I am still here to enjoy His creation.
Just a few days ago many people gathered with friends and family to celebrate thanksgiving. I had the joy of stretching it out an extra day, we area very thankful family. I was able to spend the days eating good food, playing some football, and hanging with friends and family.
By now many people know Meagan had a sonogram last Tuesday and we were able to see our pretty little daughter- Hope Victory Twilley. We are excited for the spring when we get to hold her. At first Life was a little upset because he thought the baby was a boy. After some explaining he came around to the idea of a sister, he even refers to her room as "Hope's room". He is going to be a great big brother.
Going back a few more days to Saturday, I was honored to have a second benefit thrown for me. Thank you so much Stacey, Meghan, Suzanne, and Caty. You all did a great job getting together such a great auction and show! I was blown away by everyone coming out to show support.
On top of all of this, as if my heart wasn't full enough, I got some results back from my last checkup. This test counts the number of cancerous cells in my blood, in august this number was 900 something out of 1000. After only a couple months of my new med, the number is now down to 15 out of 1000. This is a huge improvement! I am thankful that God is allowing things to improve and I look forward to seeing what He is going to do next.
Wednesday, November 20, 2013
Packed house
So last night was amazing. Lauren and Charlie did a great job puting last night's benefit together for my family and I, Tunes for Twilley at Vinny's was a huge success. I got to see a packed restaurant full of people helping us out, the bands that played were excellent, and I got to see a lot of friends.
I could not believe how many people (many whom I did not even know) came out to show their support. I am continually being amazed by the love and generosity of the people who are willing to help us out.
To you who have given money, been praying and helped out with things like groceries and grass cutting- thank you.
And now for a health update. Now that we figured out the dosage that seems to be working for me, the FDA has pulled my med due to problems it has been causing with the older population with a history of heart problems.
My doctor, who is a leader in cml study and treatment, was on top of things and did a lot paper work and set up a clinical trial for me. This way I am able to stay of the med and not have to go through the fun times of trying to get my body adapted to another med.
I still believe that God is healer. He is also provider.
When teaching his disciples how to pray, Jesus prayed for God's kingdom to come and his will be done on earth as it is in Heaven. A few years later John was given revelation of things to come. In this revelation God painted a picture of Heaven and how Heaven and Earth will be when Gods kingdom takes over.
Revelation 21:4
He will wipe away every tear from their eyes. Death will be no more. There will be no mourning, crying, or pain anymore, for the former things have passed away.”
I pray that God's kingdom would take place in my body and life as well as in my family, my church, and all over this area. Would you join me in this prayer
Sunday, October 20, 2013
Looking up
This past Thursday I had a good checkup at Hopkins. Usually we look at my blood counts and see how much lower they have gotten, but this time we were able to see the counts coming back up towards the normal range.
Since changing the dosage of my medication, my white and red counts have been able to come up on their own and my platelets are almost in the normal range (which hasn't been anywhere close to normal for at least 6 months. We are still watching the count of the cancer cells- they have come down a lot since starting this med but I am still not close to remission yet.
This was great news and as my nurse practitioner was going over the numbers I was amazed. Many people (some of who I do not even know) have been praying for me and I appreciate it because I know that God hears His people. My prayer has been that God would be glorified through whatever happens to me. He is working, and I am still believing He will heal me completely.
God is good and He can do all things. Sometimes people have to go through some rough situations but they can turn out for good. Think about Paul in the New Testament- he was close to death many times, shipwrecked on multiple occasions, and many other bad things happened to him BUT through all of it he was able to share God's message of love and redemption through Jesus Christ to much of the known world at that time.
For the past month or two I haven't been feeling up to doing much because of being sick or sore from meds or biopsies, but the past few days I have felt more like myself. I was able to go surfing with a couple guys. It was a real treat to be able to get out in the water and enjoy the beauty of God's creation.
Since changing the dosage of my medication, my white and red counts have been able to come up on their own and my platelets are almost in the normal range (which hasn't been anywhere close to normal for at least 6 months. We are still watching the count of the cancer cells- they have come down a lot since starting this med but I am still not close to remission yet.
This was great news and as my nurse practitioner was going over the numbers I was amazed. Many people (some of who I do not even know) have been praying for me and I appreciate it because I know that God hears His people. My prayer has been that God would be glorified through whatever happens to me. He is working, and I am still believing He will heal me completely.
God is good and He can do all things. Sometimes people have to go through some rough situations but they can turn out for good. Think about Paul in the New Testament- he was close to death many times, shipwrecked on multiple occasions, and many other bad things happened to him BUT through all of it he was able to share God's message of love and redemption through Jesus Christ to much of the known world at that time.
For the past month or two I haven't been feeling up to doing much because of being sick or sore from meds or biopsies, but the past few days I have felt more like myself. I was able to go surfing with a couple guys. It was a real treat to be able to get out in the water and enjoy the beauty of God's creation.
Friday, October 11, 2013
Home Sweet Home
Monday morning I headed to Hopkins for a check up because I had been having fevers off and on for 5 days. As I was meeting with my nurse practitioner it was decided I would be admitted to be treated for infection and so they could keep a close eye on me. I did not want to hear this. I do not enjoy being stuck in a hospital.
For the next few days I received IV antibiotics and they seemed to start changing things right away. The doctors wanted to check my bone marrow to make sure the fevers and shakes I had experienced were from an infection and not signs the leukemia had been acting up.
The biopsy did not go well. My doctor ended up taking off his white jacket and was drenched in sweat when it was all over an hou and a half longer than it should have taken. Because of my tough hip They were unable to get a complete biopsy but from what they got they could tell it wasn't the leukemia acting up.
We had to wait 24 hours for those results to come through but once we got the word we were able to head home. This news made me happy, it was Thursday evening and I hadn't seen life since Sunday night. My heart was aching to see him again. Unfortunately I didn't get home till 11 so I wasn't till this morning when my heart was filled with joy as I was able to spend time with my son.
During this week Meagan and I have experienced much love. Thank you all for giving to us and helping us out financially, thank you all who have been praying, and thank those of you who have sent food. I also would like to say how great the nurses and techs and support staff were at Hopkins, so compassionate and helpful.
Now that I am home I need to be careful in crowds and around sick people. I am still on antibiotics for about a week and we lowered the dose of my cancer treatment so my blood counts can come up some.
I am glad to be home.
For the next few days I received IV antibiotics and they seemed to start changing things right away. The doctors wanted to check my bone marrow to make sure the fevers and shakes I had experienced were from an infection and not signs the leukemia had been acting up.
The biopsy did not go well. My doctor ended up taking off his white jacket and was drenched in sweat when it was all over an hou and a half longer than it should have taken. Because of my tough hip They were unable to get a complete biopsy but from what they got they could tell it wasn't the leukemia acting up.
We had to wait 24 hours for those results to come through but once we got the word we were able to head home. This news made me happy, it was Thursday evening and I hadn't seen life since Sunday night. My heart was aching to see him again. Unfortunately I didn't get home till 11 so I wasn't till this morning when my heart was filled with joy as I was able to spend time with my son.
During this week Meagan and I have experienced much love. Thank you all for giving to us and helping us out financially, thank you all who have been praying, and thank those of you who have sent food. I also would like to say how great the nurses and techs and support staff were at Hopkins, so compassionate and helpful.
Now that I am home I need to be careful in crowds and around sick people. I am still on antibiotics for about a week and we lowered the dose of my cancer treatment so my blood counts can come up some.
I am glad to be home.
Sunday, October 6, 2013
It's been rough
Well after my check up and transfusion Thursday I was feeling good that I didn't have to go back to Hopkins for 2 whole weeks! I have been going weekly since starting my latest treatment. My only concern at that point was my low white count (these are the cells that fight infection and sickness).
So Friday came and so did another fever an that night I woke myself and Meagan up because I was shaking uncontrollably at 215 in the morning. By that point my fever was gone but I did have some pain. After calling the on call physician at Hopkins and taking some meds, I slowly was able to relax again. It is a weird feeling to not be cold yet have your body shaking and jaws chattering a ad not be able to stop.
The next morning came with another fever and more Tylenol. And thankfully it broke before my date with Meagan. We had to put off our anniversary celebration because of Meagan not feeling well and we needed the time to ourselves. We look back at our past 5 years of marriage and thank God for all we have been through because it has brought us closer to each other as well as closer to Him.
So the evening came around with yet another fever which died down some before bed but after sweating through the night I woke up to see 103.5 on the thermometer. Wonderful. It took the morning for it to come down with Tylenol and ice. I am so thankful for our family and friends who are here to help and pray and give. This morning Meagan and I needed help and our family came through. My mom picked up our grocery and Meagan's dad came and played with Life while Meagan and I tried to get ourselves together.
So what I thought would be 2 weeks turned into 4 days between visits. I will be heading back to Hopkins tomorrow to try to figure out what's going on and maybe
Know what to do next.
It is hard for me to be in a position where I can't work and provide for my family and I need help. Meagan is a federal employee who has to go to work during the government shutdown but won't get paid till it's all over with. So we could use some help and below are links you can check out. The biggest thing right now though is prayer.
I know medicine is great and everything but God is the one who can truly heal. He can use whatever he wants to do it- medicine, transfusion, or nothing at all. So please pray that He would heal.
www.youcaring.com/healingforryan
www.facebook.com/healingforryan
So Friday came and so did another fever an that night I woke myself and Meagan up because I was shaking uncontrollably at 215 in the morning. By that point my fever was gone but I did have some pain. After calling the on call physician at Hopkins and taking some meds, I slowly was able to relax again. It is a weird feeling to not be cold yet have your body shaking and jaws chattering a ad not be able to stop.
The next morning came with another fever and more Tylenol. And thankfully it broke before my date with Meagan. We had to put off our anniversary celebration because of Meagan not feeling well and we needed the time to ourselves. We look back at our past 5 years of marriage and thank God for all we have been through because it has brought us closer to each other as well as closer to Him.
So the evening came around with yet another fever which died down some before bed but after sweating through the night I woke up to see 103.5 on the thermometer. Wonderful. It took the morning for it to come down with Tylenol and ice. I am so thankful for our family and friends who are here to help and pray and give. This morning Meagan and I needed help and our family came through. My mom picked up our grocery and Meagan's dad came and played with Life while Meagan and I tried to get ourselves together.
So what I thought would be 2 weeks turned into 4 days between visits. I will be heading back to Hopkins tomorrow to try to figure out what's going on and maybe
Know what to do next.
It is hard for me to be in a position where I can't work and provide for my family and I need help. Meagan is a federal employee who has to go to work during the government shutdown but won't get paid till it's all over with. So we could use some help and below are links you can check out. The biggest thing right now though is prayer.
I know medicine is great and everything but God is the one who can truly heal. He can use whatever he wants to do it- medicine, transfusion, or nothing at all. So please pray that He would heal.
www.youcaring.com/healingforryan
www.facebook.com/healingforryan
Blog Sale
So here we go, I never had too much fun with yard sales but I usually don't have much to sell. I have prices with each picture and am willing to talk about it. If you are interested in anything contact me at rmtwilley@verizon.net. Any money made here is helping us get our home ready for our second child and helping with some of my pesky medical bills as well as household bills while out of work.
Just Dance
Wipeout
LetsTap
cooking mama
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