I know it's been awhile. Sorry about that. The only excuse I can provide is that we've been busy. Derek's numbers have continued to decline and the doctors have been rearranging things in hopes that it would cause his numbers to increase. His appointments have been different than what we're used to, he's been getting blood, and there have been some medication changes. The problem is that his numbers have continued to decline.
I can't stress this enough though, nobody seems too worried. While they want to figure out what's going on they don't seem to believe it's anything really big. My big worry is that the graph is failing, but his nurse has assured us that the graph took.
They said that myelofibrosis is the hardest disease to come back from in relation to the graph. It takes a really long time for your numbers to reflect your progress. This being because of the scar tissue that has built up in the bone marrow. It's hard for the baby cells to get in there and start to reproduce. The scar tissue has to be eradicated and that takes time.
Derek is having a bone marrow aspiration done today. Your prayers would be appreciated. I'll let you know how it goes and what the doctors say.
I hope you all are doing well and staying cool. It's been very hot here. I love it, except at night.
"Then they cry unto the LORD in their trouble, and he saveth them out of their distresses. He sent his word, and healed them, and delivered them from their destructions. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!"
~Psalm 107:19-21
God bless!
Wednesday, July 29, 2009
Friday, July 17, 2009
The Actual Blog
So here is the post I promised. I put the kids down (for a nap, not forever), changed Derek's Hickman line dressing, and hooked him up to some hydration.
Yes, you read that right. He is back on hydration (did I already tell you that?). He also had to go get 2 units of blood yesterday. His hematocrit was pretty low (23%). All is well though, so no worries.
I think I told you that his kidney numbers were up (I think that was the reason for more hydration). The numbers are still elevated, but they are running some new tests and keeping him on fluids to make sure everything functions properly.
One reason for his hematocrit dropping so rapidly is that before transplant Derek's blood type was A+. Brian's blood type is O+. Thus making Derek O+ after transplant. Well, Brian's cells are alive and well in Derek's body and they are now recognizing Derek's A+ cells as foreign. They are playing a game of Space Invaders inside Derek's body and killing off the A+ blood cells. This causes his hematocrit level to drop.
Some good news! His spleen is getting smaller!
The doctors aren't worried about all of the new developments, but because small things can turn into big things, they need to check out and maintain every tiny detail of Derek's body.
The kids are doing well, the weather has been nice here. We take them to a park that is by our apartment. They enjoy that.
I'm still trying to find my groove. It's coming along, but at times it's hard to shift into the different roles I need to fill. Going from mother to caregiver to wife can be a struggle sometimes, but God is definitley there helping me along. He gave me this yesterday:
"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."
~Isaiah 41:10
Awesome, huh? The verse speaks for itself. It was a great comfort to my heart yesterday morning when I read that. I'm not doing it by myself, I have the Creator of the universe telling me not to fear and that He will uphold me with His right hand. I love it.
Thanks for the prayers and support. We miss you all. Hope you are all doing well.
God bless!
Yes, you read that right. He is back on hydration (did I already tell you that?). He also had to go get 2 units of blood yesterday. His hematocrit was pretty low (23%). All is well though, so no worries.
I think I told you that his kidney numbers were up (I think that was the reason for more hydration). The numbers are still elevated, but they are running some new tests and keeping him on fluids to make sure everything functions properly.
One reason for his hematocrit dropping so rapidly is that before transplant Derek's blood type was A+. Brian's blood type is O+. Thus making Derek O+ after transplant. Well, Brian's cells are alive and well in Derek's body and they are now recognizing Derek's A+ cells as foreign. They are playing a game of Space Invaders inside Derek's body and killing off the A+ blood cells. This causes his hematocrit level to drop.
Some good news! His spleen is getting smaller!
The doctors aren't worried about all of the new developments, but because small things can turn into big things, they need to check out and maintain every tiny detail of Derek's body.
The kids are doing well, the weather has been nice here. We take them to a park that is by our apartment. They enjoy that.
I'm still trying to find my groove. It's coming along, but at times it's hard to shift into the different roles I need to fill. Going from mother to caregiver to wife can be a struggle sometimes, but God is definitley there helping me along. He gave me this yesterday:
"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."
~Isaiah 41:10
Awesome, huh? The verse speaks for itself. It was a great comfort to my heart yesterday morning when I read that. I'm not doing it by myself, I have the Creator of the universe telling me not to fear and that He will uphold me with His right hand. I love it.
Thanks for the prayers and support. We miss you all. Hope you are all doing well.
God bless!
A Blog For A Blog
I'm writing to tell you I do have an update, but I'm going to write while the kids are napping. That way I can write uninterrupted. Hope you are all doing well!
God bless!
God bless!
Sunday, July 12, 2009
It Brings A New Meaning To The Word Tired
As you can tell by the title of the post, I'm exhausted. It should get better as we get used to having the kids again. I'm trying to incorporate Derek's care and the kids' care. The problem is that there is so much to remember. The good thing is that it is forcing me to get super organized. Otherwise, very important things would not get done.
The kids are adjusting well. I think they are glad to be back with us. Tonight, I took Ashley for a walk and then we got ice cream. It was good to get some one on one time with her. I think it helps with her behavior.
We took them to the zoo on Friday. They had a lot of fun. I'll post pictures later (due to the late hour, I'm lazy). Alexander's birthday was Saturday. He had a good day. I'll post pictures of that later too(see above).
I hope everyone is doing well. Derek had to go back on IV hydration. His kidney levels are increasing. They also decreased the level of one of his medications. Hopefully that brings his kidney levels back to normal. I will let you know what we find out.
We moved into a new apartment, that means a new phone number and new apartment number. They are:
525 Minor Ave. N
Apt. 202
Seattle, WA 98109
206-262-9003
We appreciate the prayers and support. Please pray that I am able to efficiently care for everybody in the household. My sincerest desire is to see that my family is loved, cared for, and healthy or on the way to getting healthy.
"10But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.11To him be glory and dominion for ever and ever. Amen." 1 Peter 5:10&11
God Bless!
The kids are adjusting well. I think they are glad to be back with us. Tonight, I took Ashley for a walk and then we got ice cream. It was good to get some one on one time with her. I think it helps with her behavior.
We took them to the zoo on Friday. They had a lot of fun. I'll post pictures later (due to the late hour, I'm lazy). Alexander's birthday was Saturday. He had a good day. I'll post pictures of that later too(see above).
I hope everyone is doing well. Derek had to go back on IV hydration. His kidney levels are increasing. They also decreased the level of one of his medications. Hopefully that brings his kidney levels back to normal. I will let you know what we find out.
We moved into a new apartment, that means a new phone number and new apartment number. They are:
525 Minor Ave. N
Apt. 202
Seattle, WA 98109
206-262-9003
We appreciate the prayers and support. Please pray that I am able to efficiently care for everybody in the household. My sincerest desire is to see that my family is loved, cared for, and healthy or on the way to getting healthy.
"10But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.11To him be glory and dominion for ever and ever. Amen." 1 Peter 5:10&11
God Bless!
Thursday, July 9, 2009
"I've Been Ready For This My Whole Life"
It' here! I'm picking my kids up today! I haven't seen them in 4 whole weeks. I think it's been the longest 4 weeks of my life. It has also been an informative, growing 4 weeks. The kind of growing only God can accomplish.
It's now time to start a new chapter in this story we call our life.
I talked to the kids on the phone the other day and they are pretty excited to come here. I was relieved at that. I had crazy thoughts go through my head. Like maybe they didn't want to live with us anymore. What if I forgot how to be a mom, my mom and Derek both assured me that no, I did not forget how to be a mom. I know God is going to bless this time for our family.
Some prayer requests: That's I'll be able to manage Derek's care and the kids' care, that my sights remain fixed on the Lord and His Glory, and that I remember the amazing miracles God has performed through this.
"Looking unto Jesus the author and finisher of our faith; who for the joy that was set before Him endured the cross, despising the shame, and is set down at the right hand of the throne of God" Hebrews 12:2
It's now time to start a new chapter in this story we call our life.
I talked to the kids on the phone the other day and they are pretty excited to come here. I was relieved at that. I had crazy thoughts go through my head. Like maybe they didn't want to live with us anymore. What if I forgot how to be a mom, my mom and Derek both assured me that no, I did not forget how to be a mom. I know God is going to bless this time for our family.
Some prayer requests: That's I'll be able to manage Derek's care and the kids' care, that my sights remain fixed on the Lord and His Glory, and that I remember the amazing miracles God has performed through this.
"Looking unto Jesus the author and finisher of our faith; who for the joy that was set before Him endured the cross, despising the shame, and is set down at the right hand of the throne of God" Hebrews 12:2
Tuesday, July 7, 2009
Good News! Wonderful News!
Derek and I moved our stuff to a bigger apartment today. It took many trips up and down the elevator, but it was worth it. We have a lot more space.
Why may you ask do we need more space? Because my lovely children are coming to live with us! My Dad and I are driving to Sunnyside to pick them up on Thursday. I can't wait! I will explain how this came about.
I got a phone call yesterday and after hanging up I felt a heaviness settle on me. The heaviness was missing my children so much. I miss every single thing. Even getting woke up before 6 in the morning. I prayed after that phone call. I don't think I could tell you exactly what I prayed, but God understood my heart. I love it when He does that. I talked to Derek about it and we agreed that we'd try to arrange for the kids to live with us. We didn't know if it would work though. Three things needed to happen first.
1) We needed a bigger place. I went to the manager's office here to see if we could transfer. I wasn't sure if it would be possible seeing as how there is a wait list here for apartments. They got back to me later and said they had a 1 bedroom on the 2nd floor. We wouldn't have to worry about people below us, so the kids can play normally and it is off a terrace that we can take the kids to. Problem 1 solved!
2) I needed to make sure it was o.k. with Derek's health. I called his nurse and she told me it was fine and they have resources at S.C.C.A to help us. Problem 2 solved!
3) I wanted to make sure that insurance would still pay for our apartment because the rent was more. I talked to someone at our insurance and found out that they will cover the cost of our rent every month. Problem 3 solved!
This all happened in one day! Not even a full day, more like 4 hours.
"Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning." James 1:17
Derek is doing really well right now. He has 2 blood draws a week and 1 clinic appt. a week. The blood draws are to monitor that his counts are coming up and that he is metabolizing his medications the right way. His clinic appt. is kinda funny. Derek is doing so well that when we go they ask him a series of questions, to which Derek answers no to. Then they get his temp, weight, blood pressure, and they look at his mouth. That's the gist of our appts. We might have a couple of others here and there, but those are the majority of our regularly scheduled appts.
I hope everyone is doing well. I appreciate the prayers, help, and support. It is invaluable.
"We are bound to thank God always for you, brethren, as it is meet, because that your faith groweth exceedingly, and the charity of every one of you all toward each other aboundeth;"
~2 Thessalonians 1:3
God bless!
Why may you ask do we need more space? Because my lovely children are coming to live with us! My Dad and I are driving to Sunnyside to pick them up on Thursday. I can't wait! I will explain how this came about.
I got a phone call yesterday and after hanging up I felt a heaviness settle on me. The heaviness was missing my children so much. I miss every single thing. Even getting woke up before 6 in the morning. I prayed after that phone call. I don't think I could tell you exactly what I prayed, but God understood my heart. I love it when He does that. I talked to Derek about it and we agreed that we'd try to arrange for the kids to live with us. We didn't know if it would work though. Three things needed to happen first.
1) We needed a bigger place. I went to the manager's office here to see if we could transfer. I wasn't sure if it would be possible seeing as how there is a wait list here for apartments. They got back to me later and said they had a 1 bedroom on the 2nd floor. We wouldn't have to worry about people below us, so the kids can play normally and it is off a terrace that we can take the kids to. Problem 1 solved!
2) I needed to make sure it was o.k. with Derek's health. I called his nurse and she told me it was fine and they have resources at S.C.C.A to help us. Problem 2 solved!
3) I wanted to make sure that insurance would still pay for our apartment because the rent was more. I talked to someone at our insurance and found out that they will cover the cost of our rent every month. Problem 3 solved!
This all happened in one day! Not even a full day, more like 4 hours.
"Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning." James 1:17
Derek is doing really well right now. He has 2 blood draws a week and 1 clinic appt. a week. The blood draws are to monitor that his counts are coming up and that he is metabolizing his medications the right way. His clinic appt. is kinda funny. Derek is doing so well that when we go they ask him a series of questions, to which Derek answers no to. Then they get his temp, weight, blood pressure, and they look at his mouth. That's the gist of our appts. We might have a couple of others here and there, but those are the majority of our regularly scheduled appts.
I hope everyone is doing well. I appreciate the prayers, help, and support. It is invaluable.
"We are bound to thank God always for you, brethren, as it is meet, because that your faith groweth exceedingly, and the charity of every one of you all toward each other aboundeth;"
~2 Thessalonians 1:3
God bless!
Monday, July 6, 2009
Here It Is
I have been informed by some people (cough cough Bryson cough) that I don't update enough. So here it is for you guys.
Things are good. *secret smile*
God bless!
Things are good. *secret smile*
God bless!
Thursday, July 2, 2009
We're Here! We're Here! We're Here!
Sorry for the long wait in updating. There actually isn't much to report. Derek is doing really well. We had clinic today and the doctors are amazed at how well he's doing. He had a Day 28 marrow yesterday, but the results aren't back yet. I'll let you know when they are.
I hope everyone is doing well. Thank you for your support and prayers.
God bless!
I hope everyone is doing well. Thank you for your support and prayers.
God bless!
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