Friday, October 1, 2010
Stability
Just wanted to let you all know that my biopsy last week looks about the same as it did six months ago. We are thankful!
Wednesday, July 28, 2010
Psalm 32:7-8
You are my hiding place;
you will protect me from trouble
and surround me with songs of deliverance.
I will instruct you and teach you in the way you should go;
I will counsel you and watch over you.
Our recent visit with the transplant doctor went very well. Because I have been stable for a year now, we are going to have regular doctor visits every 9 weeks and bone marrow biopsies every 6 months. I only have to do blood draws (blood shots as Cade calls them) every 3 weeks. This is all very good news. In the meantime, Mr. Computer automatically checks for a 10/10 match daily.
Our family has a new friend. A couple moved in next door with a little kitty. We don't know the couple well yet, but the kitty comes over to play with the kids first thing in the morning and stays all day. She really wants to live under my bed, but we don't allow her in the house because of allergies. The kids have been thrilled!
you will protect me from trouble
and surround me with songs of deliverance.
I will instruct you and teach you in the way you should go;
I will counsel you and watch over you.
Our recent visit with the transplant doctor went very well. Because I have been stable for a year now, we are going to have regular doctor visits every 9 weeks and bone marrow biopsies every 6 months. I only have to do blood draws (blood shots as Cade calls them) every 3 weeks. This is all very good news. In the meantime, Mr. Computer automatically checks for a 10/10 match daily.
Our family has a new friend. A couple moved in next door with a little kitty. We don't know the couple well yet, but the kitty comes over to play with the kids first thing in the morning and stays all day. She really wants to live under my bed, but we don't allow her in the house because of allergies. The kids have been thrilled!
Friday, July 2, 2010
Down from the mountain
We returned from our trip to the YMCA of the Rockies in Colorado a week ago. Van attended a conference in the morning, and he joined us for play in the afternoon. Mom and Dad were even able to join us for the first two days which was the cherry on top. The kiddos were in heaven with rocks, dirt and grandparents, and Van and I were in heaven with beautiful scenery and parents to share it with. Zane's ears were peachy for the flight and altitude. We are thankful.
And...I'm caught up on laundry!
We sent a quick note to my transplant doctor just to check in. We didn't have any wisdom regarding the decision. Yesterday's blood draw reveiled that my platelets crested the 100 mark, which is cool. My white count is down a bit to 2.3, but I wonder if that is due to the runny nose that has collided with 4/5 of the family. No fever, no foul.
And...I'm caught up on laundry!
We sent a quick note to my transplant doctor just to check in. We didn't have any wisdom regarding the decision. Yesterday's blood draw reveiled that my platelets crested the 100 mark, which is cool. My white count is down a bit to 2.3, but I wonder if that is due to the runny nose that has collided with 4/5 of the family. No fever, no foul.
Sunday, June 13, 2010
Our God, He is Alive
Verse 3:
Secure is life from mortal mind,
God holds the germ within His hand,
Tho' men may search, they cannot find,
for God alone does understand.
Van had a good chat with a bone marrow doc, and he underscored that a transplant is a work of God. The verse above hit home for both Van and I this morning at church. It helps to take some of the angst of the decision to remember that God is the giver of life.
Zane's ear tube procedure is tomorrow at 6:15. Please pray that he will feel at ease and that his discomfort will be relieved. His confused big brother keeps telling him that the doctors are going to cut his ear and sew him up. Zane doesn't seem to mind this as long as he can have gum and a balloon.
Secure is life from mortal mind,
God holds the germ within His hand,
Tho' men may search, they cannot find,
for God alone does understand.
Van had a good chat with a bone marrow doc, and he underscored that a transplant is a work of God. The verse above hit home for both Van and I this morning at church. It helps to take some of the angst of the decision to remember that God is the giver of life.
Zane's ear tube procedure is tomorrow at 6:15. Please pray that he will feel at ease and that his discomfort will be relieved. His confused big brother keeps telling him that the doctors are going to cut his ear and sew him up. Zane doesn't seem to mind this as long as he can have gum and a balloon.
Thursday, June 3, 2010
The Conversation
Last night we had a really neat-o time of prayer with a sampling of our church family. Thank you to everyone who was able to participate and to all of you who pray for us. We really feel God working through you.
Today we headed up the road to my doctor in Dallas. One of the prayers last night was that God's presence would fill the room. I didn't sense this as we were playing with my new Ipod Touch (Mother's Day rocks!) and watching The Office clips, but I did sense a change in the environment as the doctor came in. He has always been guarded with us when we spoke about faith, but this time it was different. He let us know that the recent bone marrow biopsy looked about the same as the previous one, and that my blood counts have been stable. He honestly told us that even though my diagnosis warrants a transplant, he is very hesitant to proceed given my outward appearance of health. His PA agrees. He got our input, and we conceded that we were unsure what to do as well. We all talked about how we were praying for wisdom and hadn't received a peace regarding the transplant. We just don't know what the best course is. Looking at the facts about myleodysplasia, it seems that it would be obvious to go for the cure of a bone marrow transplant, but a transplant comes with very real risks. So....we all agreed to pray about it more and seek counsel from another Christian bone marrow specialist with a simple phone call. When we all have a peace about what to do, then we'll know what to do. I didn't know that the wisdom that we had been asking for would come in the form of another wait, but that is okay.
Through all of this, we feel God being with us every step of the way, and have had so many encouraging encounters with people and with the Lord. One came very early this morning in a dream. I was in some type of other-world which was something like under the ocean, but with no water and with no ocean floor. It had green plants, and I was weightless. There were 3 people with me, their faces obscured. I became trapped in a box that I called a black hole. The three waltzed into the area, seemingly oblivious to the box and one asked me what was wrong. I told them that I couldn't get out. The one told me, "We are the ground that you stand on." The one lifted up His hands, and being weightless, I stepped on them which revealed the escape above my head, just large enough for me to exit. As I went out of the picture, another person came into view looking disappointed. He was ashen with several long slender metal/machine-like clamps coming from the corner of his mouth. You might think that was a scary dream, but it totally was helpful.
We picked up the kiddos from Van's mom's house. They, of course, had a great time over the course of the last couple of days, and we are so grateful for her investment.
Now....we finally get to make some summer plans. I signed the boys up for swimming lessons and Van can book a CME. We plan on going as a family, which is very cool.
June 14th is Zane's ear tube surgery date. We are all pretty weary with his infections. Please pray for healing for him, too.
Today we headed up the road to my doctor in Dallas. One of the prayers last night was that God's presence would fill the room. I didn't sense this as we were playing with my new Ipod Touch (Mother's Day rocks!) and watching The Office clips, but I did sense a change in the environment as the doctor came in. He has always been guarded with us when we spoke about faith, but this time it was different. He let us know that the recent bone marrow biopsy looked about the same as the previous one, and that my blood counts have been stable. He honestly told us that even though my diagnosis warrants a transplant, he is very hesitant to proceed given my outward appearance of health. His PA agrees. He got our input, and we conceded that we were unsure what to do as well. We all talked about how we were praying for wisdom and hadn't received a peace regarding the transplant. We just don't know what the best course is. Looking at the facts about myleodysplasia, it seems that it would be obvious to go for the cure of a bone marrow transplant, but a transplant comes with very real risks. So....we all agreed to pray about it more and seek counsel from another Christian bone marrow specialist with a simple phone call. When we all have a peace about what to do, then we'll know what to do. I didn't know that the wisdom that we had been asking for would come in the form of another wait, but that is okay.
Through all of this, we feel God being with us every step of the way, and have had so many encouraging encounters with people and with the Lord. One came very early this morning in a dream. I was in some type of other-world which was something like under the ocean, but with no water and with no ocean floor. It had green plants, and I was weightless. There were 3 people with me, their faces obscured. I became trapped in a box that I called a black hole. The three waltzed into the area, seemingly oblivious to the box and one asked me what was wrong. I told them that I couldn't get out. The one told me, "We are the ground that you stand on." The one lifted up His hands, and being weightless, I stepped on them which revealed the escape above my head, just large enough for me to exit. As I went out of the picture, another person came into view looking disappointed. He was ashen with several long slender metal/machine-like clamps coming from the corner of his mouth. You might think that was a scary dream, but it totally was helpful.
We picked up the kiddos from Van's mom's house. They, of course, had a great time over the course of the last couple of days, and we are so grateful for her investment.
Now....we finally get to make some summer plans. I signed the boys up for swimming lessons and Van can book a CME. We plan on going as a family, which is very cool.
June 14th is Zane's ear tube surgery date. We are all pretty weary with his infections. Please pray for healing for him, too.
Monday, May 24, 2010
Enjoying the Journey While Waiting for Breakthrough
I went to Dallas today for a bone marrow biopsy. Yesterday, a dear friend prayed that there would not be any pain. For some reason, this had never occurred to me, and this was by far the smoothest procedure to date. The only pain I felt were the pricks of lidocaine. On the way up, I listed to an incredible sermon by Bill Johnson that had some amazing healing testimonies, and while waiting the extra hour for the biopsy I spent some time in the book The Spiritual Disciplines by Foster. The former talked about enjoying the journey while waiting for the breakthrough, and the chapter that I was reading was about Christian meditation. Needless to say by the time the PA arrived, I was prepared for a victory. The kiddos were with an incredible babysitter in Waco. It was so nice to have her take care of them for the day. They visited (and tried to capture) her fish and had some lunch at Pei Wei.
We went to Utopia this weekend for some great time with family. There never seems to be quite enough time for us to do everything we would like. This trip's highlight was Van and Gil taking the kiddos fishing at a friend's dock while the rest of us watched Avi and took care of lunch up the stairs under the shelter. It was great. Tricia and Carly found a great stash of fossils along the creek, so we collected while Avi sat and patted the water at the edge. Cade discovered the hard way how to identify leeches and Zane forgot to wait for a swimsuit before getting in the creek, but all in all it was pretty neat. All 12 of us loaded up in Dad's truck, most of us soaking wet with caliche smears and pockets full of fossils for a sightseeing trip up the mountain.
The previous day Van had a great kayaking trip down the Sabinal and saw wild hogs and a huge owl, so I felt like he actually vacationed on his vacation day. Later, he bought a beautiful watercolor of the upper Sabinal that my aunt painted. He has looked in half the art galleries in Texas, and he finds the one that he wants in my hometown. Van teases that he married me for my location. Works for me.
I'll go back to Dallas June 3 for results and a chat. Thanks for praying. The Lord is at work.
We went to Utopia this weekend for some great time with family. There never seems to be quite enough time for us to do everything we would like. This trip's highlight was Van and Gil taking the kiddos fishing at a friend's dock while the rest of us watched Avi and took care of lunch up the stairs under the shelter. It was great. Tricia and Carly found a great stash of fossils along the creek, so we collected while Avi sat and patted the water at the edge. Cade discovered the hard way how to identify leeches and Zane forgot to wait for a swimsuit before getting in the creek, but all in all it was pretty neat. All 12 of us loaded up in Dad's truck, most of us soaking wet with caliche smears and pockets full of fossils for a sightseeing trip up the mountain.
The previous day Van had a great kayaking trip down the Sabinal and saw wild hogs and a huge owl, so I felt like he actually vacationed on his vacation day. Later, he bought a beautiful watercolor of the upper Sabinal that my aunt painted. He has looked in half the art galleries in Texas, and he finds the one that he wants in my hometown. Van teases that he married me for my location. Works for me.
I'll go back to Dallas June 3 for results and a chat. Thanks for praying. The Lord is at work.
Thursday, May 20, 2010
May 20, 2010
While Avi was in the bathtub and Zane was determined to be the one to wash her hair, I finally got the phone call. In between screams I learned:
The 10/10 person didn't pan out, so we're probably going with the 9/10 person. The doc said that the 9/10 person is a good match. I have a bone marrow biopsy on Mon or Tue, and I have a doctor visit on June 3 (don't know times yet). The doc really wants to look under the microscope again before doing a transplant. I won't have any more info than that before tomorrow. It might be a few more weeks before we have a plan. (Seems like I've said that before.) At least the paint cans got deposited.
We moved Zane's Ear appointment to today at 3:15 because he has been waking up in the middle of most nights with ear pain, and we don't want to wait any longer if ear tubes could help him. We're concerned that it also may affecting his hearing and speech.
In all of this, we are once again challenged with where we put our trust. We decided from the get-go that we put our trust in the Lord and His healing power, and that we and the medical community are in His hands.
We ask you to continue praying about Zane and me, and pray big. Our God is perfectly capable of taming a storm.
Van has a vacation day tomorrow, so we are headed to Utopia. He also has some vacation/CME days scheduled for this summer, but it has been hard to figure out where to go and who all is going given my uncertain health status. At the very least, it will involve a mountain range and my rugged man, though.
In the midst of our mess, our sweet kiddos are growing. Avi is very much into her shoes, and insists on wearing them from the moment she wakes up. She doesn't care if she is just in a diaper, the shoes must be on. She also loves to carry around little board books and talk about what is in them. Avi's learning how to hang with her brothers now that she can climb onto the couch. She joines them in their blanket/pillow/stuffed animal adventures. Zane is in the middle of things, too, with a fist full of coins that he carries around night and day. A couple of minutes ago in the middle of this pile, Cade asked me, "Mom, can I have a match so I can blow this sucker up?" And the day begins....
The 10/10 person didn't pan out, so we're probably going with the 9/10 person. The doc said that the 9/10 person is a good match. I have a bone marrow biopsy on Mon or Tue, and I have a doctor visit on June 3 (don't know times yet). The doc really wants to look under the microscope again before doing a transplant. I won't have any more info than that before tomorrow. It might be a few more weeks before we have a plan. (Seems like I've said that before.) At least the paint cans got deposited.
We moved Zane's Ear appointment to today at 3:15 because he has been waking up in the middle of most nights with ear pain, and we don't want to wait any longer if ear tubes could help him. We're concerned that it also may affecting his hearing and speech.
In all of this, we are once again challenged with where we put our trust. We decided from the get-go that we put our trust in the Lord and His healing power, and that we and the medical community are in His hands.
We ask you to continue praying about Zane and me, and pray big. Our God is perfectly capable of taming a storm.
Van has a vacation day tomorrow, so we are headed to Utopia. He also has some vacation/CME days scheduled for this summer, but it has been hard to figure out where to go and who all is going given my uncertain health status. At the very least, it will involve a mountain range and my rugged man, though.
In the midst of our mess, our sweet kiddos are growing. Avi is very much into her shoes, and insists on wearing them from the moment she wakes up. She doesn't care if she is just in a diaper, the shoes must be on. She also loves to carry around little board books and talk about what is in them. Avi's learning how to hang with her brothers now that she can climb onto the couch. She joines them in their blanket/pillow/stuffed animal adventures. Zane is in the middle of things, too, with a fist full of coins that he carries around night and day. A couple of minutes ago in the middle of this pile, Cade asked me, "Mom, can I have a match so I can blow this sucker up?" And the day begins....
Wednesday, April 28, 2010
Of spiders and paint
As I nervously watch my boys be "spiders" with bungee cords attached to their belt loops on the swing set, I'll report an update.
Our potential 10/10 donor is scheduled to be tested next week, and the lab takes about a week and a half to process the results. It is very weird to not be able to contact the stranger to say thank you for their sacrifice. So, at the very latest, it should be before Waco's Hazardous Waste Collection Day (aka May 15) that we should know something. The old paint cans and I have been waiting a long time for this.
Please kick that praying into high gear. May the Lord be with you.
Our potential 10/10 donor is scheduled to be tested next week, and the lab takes about a week and a half to process the results. It is very weird to not be able to contact the stranger to say thank you for their sacrifice. So, at the very latest, it should be before Waco's Hazardous Waste Collection Day (aka May 15) that we should know something. The old paint cans and I have been waiting a long time for this.
Please kick that praying into high gear. May the Lord be with you.
Wednesday, April 21, 2010
The last coupl'a months
My baby girl is now running around like a wild woman. Avi is now 16 months old and crazy adorable with strawberry blond, practically red hair that she won't let me put a bow in. She is still a tiny little thing. She is starting to give her brothers a run for their money, though.
Zane is an expert at getting into messes. They usually involve candy, bandaids, money or food of some type. Getting clothing on the child is a huge challenge, and he has zero modesty, as witnessed as he mooned those attending the Easter sunrise service outside of Utopia. (No restroom in sight? No problem!) He is still my biggest snuggler and nearly always has a smile. He likes to charm all the elderly ladies at HEB.
Cade has really been wonderful in the last few months. He keeps us laughing with his inventions and ideas (the latest was a squirrel trap contraption with his cousins), and he helps me out around the house. It is impossible to exhaust his energy supply.
We're still waiting to hear about the "perfect match" 10/10 donor. We continually pray for healing without the ordeal, but are grateful for the match. I think we'll hear back in the next couple of weeks. I'm spending my days raising precious kiddos and trying to think of new things to put into that blessed crock pot. Buffalo chicken breasts are the next attempt....we'll see. It'll be healthy with something green and brown rice, right?
Van bought a new-to-us fancy-shmancy bike. He thinks it will be better to him in his old age (ha!) than running. It has inspired Cade to abandon training wheels, so come Saturday, I'll bundle him up like a Charmin commercial and let-'er-rip. Van is ready for the day off, and he scheduled a couple of days off in May and a couple of weeks this summer. Yippee!
Be blessed in the Lord and the power of His might.
Zane is an expert at getting into messes. They usually involve candy, bandaids, money or food of some type. Getting clothing on the child is a huge challenge, and he has zero modesty, as witnessed as he mooned those attending the Easter sunrise service outside of Utopia. (No restroom in sight? No problem!) He is still my biggest snuggler and nearly always has a smile. He likes to charm all the elderly ladies at HEB.
Cade has really been wonderful in the last few months. He keeps us laughing with his inventions and ideas (the latest was a squirrel trap contraption with his cousins), and he helps me out around the house. It is impossible to exhaust his energy supply.
We're still waiting to hear about the "perfect match" 10/10 donor. We continually pray for healing without the ordeal, but are grateful for the match. I think we'll hear back in the next couple of weeks. I'm spending my days raising precious kiddos and trying to think of new things to put into that blessed crock pot. Buffalo chicken breasts are the next attempt....we'll see. It'll be healthy with something green and brown rice, right?
Van bought a new-to-us fancy-shmancy bike. He thinks it will be better to him in his old age (ha!) than running. It has inspired Cade to abandon training wheels, so come Saturday, I'll bundle him up like a Charmin commercial and let-'er-rip. Van is ready for the day off, and he scheduled a couple of days off in May and a couple of weeks this summer. Yippee!
Be blessed in the Lord and the power of His might.
Saturday, February 6, 2010
A Snag
The person that is potentially a perfect match is not available for testing until April. This has been such a roller coaster. I'm going in every two weeks for blood tests, and as long as I can behave myself, we get to wait to see if this person will match up.
Kiddos have been taking turns being sick this week, and it has been raining a bunch, so it was nice today to mull around Pier 1 today and look at pretty things by myself. Cade has healed up, so we were able to go to a sweet birthday party for a karate buddy today. That was really nice. As I type this, he is watching his daddy play dodgeball up at the church building to benefit the Ft. Hood families involved in the tragedy.
Avi's had the hardest time the last couple of days. Her fever has been up and down, and every once in awhile she'll throw in a bonus upchuck. On Friday, I think I was able to put her down a total of 10 minutes. It was very good to have Van home today so he could share in the love. I think she is on the upswing.
While at Mother's Day Out on Thursday, my mountain climbing Zane decided to get himself stuck in the adult-sized rocking chair in his classroom. I think most of the adults in the church building aided in stripping him down and lotioning him up to free him before the building manager arrived with the reciprocal saw. Everyone got a good laugh, and I now have witnesses that he is capable of much even in the presence of supervision.
Van did very well at the marathon. I was totally impressed. He has no desire to let it become a habit. He says that hiking in the mountains is more fun and less time consuming. I'm not going to argue with him!
My life group at church has been faithfully praying for us this week as I know many of you have. As tough as this week was supposed to be, I have had a strange peace, and I am so thankful for the Lord carrying us through the tough times.
Kiddos have been taking turns being sick this week, and it has been raining a bunch, so it was nice today to mull around Pier 1 today and look at pretty things by myself. Cade has healed up, so we were able to go to a sweet birthday party for a karate buddy today. That was really nice. As I type this, he is watching his daddy play dodgeball up at the church building to benefit the Ft. Hood families involved in the tragedy.
Avi's had the hardest time the last couple of days. Her fever has been up and down, and every once in awhile she'll throw in a bonus upchuck. On Friday, I think I was able to put her down a total of 10 minutes. It was very good to have Van home today so he could share in the love. I think she is on the upswing.
While at Mother's Day Out on Thursday, my mountain climbing Zane decided to get himself stuck in the adult-sized rocking chair in his classroom. I think most of the adults in the church building aided in stripping him down and lotioning him up to free him before the building manager arrived with the reciprocal saw. Everyone got a good laugh, and I now have witnesses that he is capable of much even in the presence of supervision.
Van did very well at the marathon. I was totally impressed. He has no desire to let it become a habit. He says that hiking in the mountains is more fun and less time consuming. I'm not going to argue with him!
My life group at church has been faithfully praying for us this week as I know many of you have. As tough as this week was supposed to be, I have had a strange peace, and I am so thankful for the Lord carrying us through the tough times.
Tuesday, January 26, 2010
Preparing for a transplant while planning for a miracle
My mind is split a bit. I'm attempting to make preparations for a March transplant, all the while expecting my Rider on the white horse to come and save me. Our 10/10 match has been delayed for some reason, and my white blood cell count is down. (If your child has a fever, it is best to keep them home because the elderly and people in my shoes that have immune system issues have bigger consequences.) This is a bit discouraging, and I have to admit that our family has had a case of the grumpies. All that said, I am getting in the mood to get this over with!
The Miracle Match Marathon is coming up this weekend. Van is running in the marathon. You read that right! I am so proud of him. He has worked his tail (and knees) off in preparation.
The kiddos are growing much too fast. Avi can hold onto our fingers and walk across the room. The boys can break into most of the baby locks across the house, so it is slight mayhem most of the time.
If you have an interest in helping with my kiddos or with helping my family with meals while I am out, you can let Carrie Driskill know. I'll be out of pocket, so it is best to go straight to her. She can communicate with my parents about it all, and that will lessen their workload. We still don't have dates, but you can give her your contact information.
Much love to all. May the joy of the Lord be your strength.
The Miracle Match Marathon is coming up this weekend. Van is running in the marathon. You read that right! I am so proud of him. He has worked his tail (and knees) off in preparation.
The kiddos are growing much too fast. Avi can hold onto our fingers and walk across the room. The boys can break into most of the baby locks across the house, so it is slight mayhem most of the time.
If you have an interest in helping with my kiddos or with helping my family with meals while I am out, you can let Carrie Driskill know. I'll be out of pocket, so it is best to go straight to her. She can communicate with my parents about it all, and that will lessen their workload. We still don't have dates, but you can give her your contact information.
Much love to all. May the joy of the Lord be your strength.
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