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.


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.

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

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.



Fender Hot Rod DeVille. $550

LP Aspire Djembe $50



Ibanez practice amp $75



Udu Drum with case $80



Daisey Rock Heart Bass $125



PRS Tremonti SE with Case $450



Queen Comforter with 2 pillow cases and bed skirt $30



WiiFit $30



Tony Hawk Ride for Wii $30



Wii games $8 each
Just Dance
Wipeout
LetsTap
cooking mama

Friday, October 4, 2013

Thank you blood donors

Thank you blood donors. Over the past couple weeks I have had to receive a bag of platelets and 2 bags of red blood cells.

One of the side affects of my current medication is a drop in blood counts. So now my platelets and red cells are up I just have be careful with my lack of white cells- neutrophils in particular which are the infection fighting cells.

So you will not see me out in a crowd, people at AGH won't see me at work for a little while and I will be trying to dodge anyone I hear is sick. This won't be too difficult since I am a bit of an introvert anyway.

As far as my treatment, we will be checking the number of cancer cells floating around in my blood in two weeks. As far as home life, Meagan is still dealing with a lot of nausea from the pregnancy and Life has started using the potty. Very exciting!

My next post is going to be a bit of a fund raiser (as medical bills keep eating away at our bank account now more than usual). We have a lot of items around the house no longer need and that are taking up space we will need for our newest addition to the family who will be arriving in April. So instead of having a yard sale, I will be holding a blog sale. I hope to have it posted in the next few days but Meagan has put a few things on Facebook already. Be looking out for it and please help spread the news when it is posted.