Today is day +9. Other than having a really goofy hair do, Nick is doing very well. His hair is coming out in clumps, and is nearly gone on the front of his head. There is also a bald spot on the very back of his head. Glenn joked that he looks like George Kastanza (from Seinfeld.) It's not a very flattering description, but sort of true.
When Nick's docs came in this morning, one of their comments was that he could not stay here much longer. He gets more Methyltrexate on day +11, but after that it shouldn't be very long before he can move to the apartment. He is doing so much better than the average day +9 guy.
I just got back from the worship service in the Vanderbilt chapel. It is always a sweet time worshiping with believers of all different traditions. Same Savior...different songs. The Pastor leading the service had a very thick Russian sounding accent. I could understand him perfectly, and he very obviously was being led by the Holy Spirit. As he read the 23rd Psalm I was repeating it with him in my mind. When he got to the part that says, "He anoints my head with oil," his pronunciation made it sound like, "He annoys my head with oil." Strobe lights went off in my brain.
Annoys? Is that ever true? The sad answer that I have to give is, yes. I had never thought about it that way, but whenever we sense that empowerment and prompting from God to do something or say something or sacrifice something or even surrender to a life's calling, at that very moment our heads are being anointed for that task. Do you feel anointed or annoyed?
This morning I had to repent to my sweet Savior for having been annoyed at times by His anointing. It is a wonderful thing that He weaves our lives together by these moments of anointing, and chooses to trust us, as flawed as we are, to impact the lives of others. My prayer this morning is that I would no longer EVER be annoyed by His anointing...that regardless of what is going on in my life, I be ever ready to move at His slightest prompting.
I realize that I may be the only one to which this applies, but I believe that I was anointed to share it...so I did.
It is well.
Sunday, January 29, 2012
Friday, January 27, 2012
Two...In More Than A Decade
Here we are at day +7. We were told Monday that by day +7 Nick would be fed by IV because his throat would be too sore and his mucous membranes would be in a horrible state. In fact, on Monday Nick asked his doctor when the "sucky days" would begin. She said that by the end of the week it would be pretty sucky. She also followed that she had only had one patient in more than a decade that could still eat by day +7, and that he could no longer even try to eat anything but soft foods.
We have had a couple of pretty hard days. Wednesday evening Nick's fever spiked all of a sudden and his throat became very sore. They immediately took blood and urine samples to culture, did a chest x-ray, and put him on more prophylactic antibiotics. We were told that this was expected, but they needed to find the cause immediately. We were also told that he would be on parenteral nutrition Thursday morning.
To make a long story short...not only is the fever gone and all the cultures negative, but today he ate two bowls of Ramen noodles, one bowl of macaroni & cheese, and drank two Ensures, two bottles of apple juice and a Gatoraid. No IV nutrition, and no more sore throat. He had rebounded by Thursday afternoon.
Now she has seen TWO, in more than a decade.
It is Well.
We have had a couple of pretty hard days. Wednesday evening Nick's fever spiked all of a sudden and his throat became very sore. They immediately took blood and urine samples to culture, did a chest x-ray, and put him on more prophylactic antibiotics. We were told that this was expected, but they needed to find the cause immediately. We were also told that he would be on parenteral nutrition Thursday morning.
To make a long story short...not only is the fever gone and all the cultures negative, but today he ate two bowls of Ramen noodles, one bowl of macaroni & cheese, and drank two Ensures, two bottles of apple juice and a Gatoraid. No IV nutrition, and no more sore throat. He had rebounded by Thursday afternoon.
Now she has seen TWO, in more than a decade.
It is Well.
Saturday, January 21, 2012
Life-Changing Camping Mattress
Yesterday's transplant went very well. There is much preparation that goes into safe guarding against reactions, but we had no reactions with which to deal. Before the transplant they pre-medicated Nick with several anti-nausea drugs, Tylenol, & Benadryl, which all worked together to make him very sleepy. So, the only small difficulty that we had was to watch his oxygen saturation. Whenever it would drop, Amanda or I would poke him or stroke his hand and remind him to breathe. It was like poking an angry bear with a stick. He was so sleepy, and was not happy at all that we repeatedly had to awaken him. That wore off in a couple of hours, and he really felt great.
The doctor and attending nurse were amazed at how easy it went...absolutely no complications. You prayer warriors out there are making a tangible impact on our lives!
Today Nick has been very tired. He has slept most of the day, but the amazing thing is that we both slept last night. What a difference it makes to sleep more than an hour or so in a row. We were still sacked out when the docs came in at 0900. On a useful side note: If you ever have to stay all night in a pull out chair, especially several nights in a row, a trip to Walmart can make all the difference in the world. I got a twin sized camping mattress and a plug-in blower-upper for less than $20. Talk about a great investment! When we are finished with this adventure I plan to make sure that every room on Vanderbilt's oncology floor is equipped with these life-changing camping mattresses. There are caregivers sleeping in pull-out chairs in nearly every room.
This is day +1...just 99 more, and home we go.
It is well.
The doctor and attending nurse were amazed at how easy it went...absolutely no complications. You prayer warriors out there are making a tangible impact on our lives!
Today Nick has been very tired. He has slept most of the day, but the amazing thing is that we both slept last night. What a difference it makes to sleep more than an hour or so in a row. We were still sacked out when the docs came in at 0900. On a useful side note: If you ever have to stay all night in a pull out chair, especially several nights in a row, a trip to Walmart can make all the difference in the world. I got a twin sized camping mattress and a plug-in blower-upper for less than $20. Talk about a great investment! When we are finished with this adventure I plan to make sure that every room on Vanderbilt's oncology floor is equipped with these life-changing camping mattresses. There are caregivers sleeping in pull-out chairs in nearly every room.
This is day +1...just 99 more, and home we go.
It is well.
Thursday, January 19, 2012
More Than Enough (Do You Know Him?)
Oh my my! Have you met the God of MORE THAN ENOUGH? (Where's a Hammond B3 organ when you need it?)
Here is how the day went: Amanda and Andrew went to breakfast. Amanda ate a cheese & veggie omelet & part of Andrew's pancakes. (That is a miracle in itself) Then she checked in for the vein drain. Before they started they had to do some testing. She was told that she needed a baseline stem cell concentration of 15 in order to continue with the harvesting. She was also told that petite, white females didn't usually have very good numbers, and that if she were a large, ethnic male she would have a better chance to have a number closer to 70. Here's the second miracle: her number was 115. Yes, the number that she needed, plus one hundred. The medical professionals were amazed.
They obviously proceeded. She endured having two 17 gauge needles inserted in her arms, and having her arms tied down for a little over 4 hours straight. She was aching from the shots that she had had all week, on top of being unable to move. She shivered, and hurt, and eventually had a pile of 10 blankets on top of her, but she endured. (When has anyone ever done something so very important without there being something to endure?)
At the end of the time period she was told that she could stay hooked up for another 1 1/2 hours, or risk having to come back tomorrow morning for another harvesting session. The pain had been so great that she chose to rest and come back. A couple of hours ago the doctor called to let her know whether or not she needed to return. She started by telling Amanda that they needed 4,000,000 units for the transplant. Then she continued by telling Amanda that they had already harvested 7,000,000 from her. More, More, More than enough!
Y'all, I can hardly contain myself. Why don't you just go ahead and praise the Lord with me. WooHoo!!
The transplant is tomorrow at 11:00 a.m. I can't wait to see what else happens.
It is VERY well.
Here is how the day went: Amanda and Andrew went to breakfast. Amanda ate a cheese & veggie omelet & part of Andrew's pancakes. (That is a miracle in itself) Then she checked in for the vein drain. Before they started they had to do some testing. She was told that she needed a baseline stem cell concentration of 15 in order to continue with the harvesting. She was also told that petite, white females didn't usually have very good numbers, and that if she were a large, ethnic male she would have a better chance to have a number closer to 70. Here's the second miracle: her number was 115. Yes, the number that she needed, plus one hundred. The medical professionals were amazed.
They obviously proceeded. She endured having two 17 gauge needles inserted in her arms, and having her arms tied down for a little over 4 hours straight. She was aching from the shots that she had had all week, on top of being unable to move. She shivered, and hurt, and eventually had a pile of 10 blankets on top of her, but she endured. (When has anyone ever done something so very important without there being something to endure?)
At the end of the time period she was told that she could stay hooked up for another 1 1/2 hours, or risk having to come back tomorrow morning for another harvesting session. The pain had been so great that she chose to rest and come back. A couple of hours ago the doctor called to let her know whether or not she needed to return. She started by telling Amanda that they needed 4,000,000 units for the transplant. Then she continued by telling Amanda that they had already harvested 7,000,000 from her. More, More, More than enough!
Y'all, I can hardly contain myself. Why don't you just go ahead and praise the Lord with me. WooHoo!!
The transplant is tomorrow at 11:00 a.m. I can't wait to see what else happens.
It is VERY well.
Tuesday, January 17, 2012
Carried
Nick and Amanda are both doing fine. Since I last wrote, Nick had his Hickman port installed. He did very well with that. He just had a bit of soreness, but handled it like a trooper. Then he and Amanda went back to Vanderbilt on Saturday morning. He was admitted on Sunday morning and received chemo that evening and again on Monday. Today he had his first two radiation treatments. It caused a bit of redness, but other than that it hasn't seemed to cause any reactions. Amanda joked that he was going for "rotisserie" treatments. ( I'm glad that he didn't come back smelling like broiled chicken.)
Amanda has been getting daily Neupogen shots to beef up her immune system. This will continue until tomorrow, and the stem cell harvest will begin Thursday morning.
Our children were born very close together. Currently Amanda is 26, Megan is 25, and Nick is 23. Amanda has always been petite and constantly moving. She was full on running at 8 months of age, and still gets up every morning to run multiple miles. (I'm proud of her for doing it, but I do not understand it.) Nick weighed 7lb 6 oz, and was born 4 weeks early. I was told that he would have been an 11 pounder if he had been born on time. He was a big boy.
When Amanda was 4 and Nick was 1, Amanda would pick him up, put him on her hip, and walk around with him like she was already grown. I don't think that there was much difference in their weights at the time, but it didn't seem to phase her. I really believe that it took much longer for him to learn to walk because he just plain didn't need to. He could holler, "Manda," and get taken anywhere he wanted to go.
As I think back on those memories that are emblazoned in my mind, I am in awe. Only God knew that one day He would use her to save his life. Nick is now nearly twice her size, but just let me tell you, size does not matter. There is no way that she could carry him around on her hip, or even pick him up, but because God is in charge... she is carrying him.
Throughout this journey I have had so many people say, "I don't know how you are doing this." The answer is that we are being carried. All of you faithful friends and family are praying, and the God that created the universe is upholding us with His strong right hand. Glory to God!!!
It is well!
Amanda has been getting daily Neupogen shots to beef up her immune system. This will continue until tomorrow, and the stem cell harvest will begin Thursday morning.
Our children were born very close together. Currently Amanda is 26, Megan is 25, and Nick is 23. Amanda has always been petite and constantly moving. She was full on running at 8 months of age, and still gets up every morning to run multiple miles. (I'm proud of her for doing it, but I do not understand it.) Nick weighed 7lb 6 oz, and was born 4 weeks early. I was told that he would have been an 11 pounder if he had been born on time. He was a big boy.
When Amanda was 4 and Nick was 1, Amanda would pick him up, put him on her hip, and walk around with him like she was already grown. I don't think that there was much difference in their weights at the time, but it didn't seem to phase her. I really believe that it took much longer for him to learn to walk because he just plain didn't need to. He could holler, "Manda," and get taken anywhere he wanted to go.
As I think back on those memories that are emblazoned in my mind, I am in awe. Only God knew that one day He would use her to save his life. Nick is now nearly twice her size, but just let me tell you, size does not matter. There is no way that she could carry him around on her hip, or even pick him up, but because God is in charge... she is carrying him.
Throughout this journey I have had so many people say, "I don't know how you are doing this." The answer is that we are being carried. All of you faithful friends and family are praying, and the God that created the universe is upholding us with His strong right hand. Glory to God!!!
It is well!
Thursday, January 12, 2012
You Silly Girl
Nick is having a short surgical intervention in the morning. They are removing his Power Port and replacing it with a Hickman Line. It shouldn't take very long, but it's surgery nonetheless. Both the Power Port & Hickman Line are central lines. To put it simply, they are internal IV catheters that provide access from the outside of his body to just above his heart. The Power Port can only be used for one thing at a time. Whereas, the Hickman has 3 separate lines. The transplant requires a Hickman.
This has been a week of blessings and difficulties (Sounds like normal life, doesn't it?). A dental check-up and any needed dental work was a requirement of the transplant. So, he was to go Monday & Tuesday to have a few fillings. Tuesday he was way to nauseous to "have some guys hand in my mouth," as he put it. So, we moved Tuesday's work to Wednesday. When he got there the dentist advised that he should pull 2 of Nick's wisdom teeth that were crowding on the side that would already be numb. I really don't think that either Nick or the dentist knew that that would not be a wise course of action at this time. It took several hours to get the bleeding stopped the first time. Then came a nap, pain meds, and some chicken nuggets. After another nap the bleeding started up again, and we didn't get it stopped until very late last night. Megan arrived at 5:45 this morning to whisk him away to Vandy.
There was some question this morning as to whether the pulled teeth would postpone the transplant, but after much consultation it was decided that we could proceed.
Megan and Nick checked in to the aforementioned apartment this afternoon. Nick texted me that it was luxury accommodations...just like a vacation house. We didn't know til yesterday that...not only are the utilities included, but utilities include WiFi & cable. Yet another blessing! When God arranges something He takes care of all of the details.
My sweet cousin, Gaye Lynn, expressed this so well on my Facebook page: "Don't you love when God can say, "You silly girl. All that concern for nothing...I've got your back!" He is ALWAYS in control and we are always human...love and hugs!"
I'm so thankful that such a wonderful God desires a relationship with this flawed human. Meeting our needs...building our faith...and loving us like we can't even imagine.
Day -7 eve, and it is well.
This has been a week of blessings and difficulties (Sounds like normal life, doesn't it?). A dental check-up and any needed dental work was a requirement of the transplant. So, he was to go Monday & Tuesday to have a few fillings. Tuesday he was way to nauseous to "have some guys hand in my mouth," as he put it. So, we moved Tuesday's work to Wednesday. When he got there the dentist advised that he should pull 2 of Nick's wisdom teeth that were crowding on the side that would already be numb. I really don't think that either Nick or the dentist knew that that would not be a wise course of action at this time. It took several hours to get the bleeding stopped the first time. Then came a nap, pain meds, and some chicken nuggets. After another nap the bleeding started up again, and we didn't get it stopped until very late last night. Megan arrived at 5:45 this morning to whisk him away to Vandy.
There was some question this morning as to whether the pulled teeth would postpone the transplant, but after much consultation it was decided that we could proceed.
Megan and Nick checked in to the aforementioned apartment this afternoon. Nick texted me that it was luxury accommodations...just like a vacation house. We didn't know til yesterday that...not only are the utilities included, but utilities include WiFi & cable. Yet another blessing! When God arranges something He takes care of all of the details.
My sweet cousin, Gaye Lynn, expressed this so well on my Facebook page: "Don't you love when God can say, "You silly girl. All that concern for nothing...I've got your back!" He is ALWAYS in control and we are always human...love and hugs!"
I'm so thankful that such a wonderful God desires a relationship with this flawed human. Meeting our needs...building our faith...and loving us like we can't even imagine.
Day -7 eve, and it is well.
Tuesday, January 10, 2012
A Quick Update
Just a quick update: I wrote a couple of days ago that we were having a difficulty with the apartment arrangements. Well, I just found out that it is all worked out, and that it will all be paid for by our insurance...including utilities. Originally, we were going to need to pay any utilities over $100 per month.
It just goes to show us that just because things are not working out like we think they should...it doesn't mean that God does not have something better in store.
Please do not let your faith waiver. The very definition of faith says that we should not take into account what our eyes see, but what our spirits know to be true: the goodness, kindness, faithfulness, and omnipotence of God.
It is well.
It just goes to show us that just because things are not working out like we think they should...it doesn't mean that God does not have something better in store.
Please do not let your faith waiver. The very definition of faith says that we should not take into account what our eyes see, but what our spirits know to be true: the goodness, kindness, faithfulness, and omnipotence of God.
It is well.
Sunday, January 8, 2012
Multicolored Strobe Lights With Glitter On Top
So much of normal daily life seems to have been a series of unremarkable days strung together with sparkling, beaded milestone days that stand out in our memories. I am believing that this transplant is not only going to be a sparkling day, but a day full of multicolored strobe lights with glitter on top (metaphorically speaking.)
The schedule has changed by one day since I last posted dates. Nick goes this Friday (Day -7) to have his current life port removed and have a Hickman port installed. He will be checked again on Saturday, then admitted on Sunday to begin treatment. He will get 2 days of high dose chemo, then 3 days of full body radiation. Next Friday, January 20th, he will receive the transplant. Amanda begins her treatment this Saturday and should be finished with her portion by the morning of the 20th.
Amanda, Megan, my sister, Emily, and I are Nick's designated care givers for the 107 days. We will be tag team mothering him. He will not be able to have visitors other than care givers (and Dad) for the first several weeks. After the first week or so we will need to be watching closely for any reactions to the transplant called graft vs. host. He will be on several medications to guard against the reactions, but it will be a miraculous thing if he has no reactions. As long as we keep a close watch and alert the doctors promptly, these reactions can be taken care of with very little drama. If everything goes as planned, he should be reaction free after a year or so. By then his body should be completely converted to Amanda's DNA, and no longer fighting against itself.
He is expected to be in-patient at Vanderbilt for approximately 21 days, then we should move to an apartment close to Vanderbilt for the remainder of the 100 days. We are supposed to gain access to the apartment this week so that family can sleep, rest, shower, wash clothes, and eat there. However, there seems to be some difficulties with the apartment arrangements. Please pray that all of these details will work out peacefully. We do not have access to the accommodations about which we were originally told, but I am just expecting that that means that we will have more of a blessing in store.
For those who have asked, I'll detail a bit of what is going on with the rest of us. I am beginning my second semester in nursing school, and should graduate in May 2013. Amanda will graduate in December 2012.
I am taking only 1 of the 2 clinical courses usually taken at this point, but will make up the shortfall later. This choice will allow me to be at Vanderbilt Thursday evening through Monday evening or Tuesday morning of each week while Nick is there. The other caregivers will cover Tuesday through Thursdays. I am also taking a History course online. I only lack a couple of classes having the prerequisites for pursuing my masters after I complete the RN next May. There will be a lot of sitting and studying time during the next 107 days. Megan is saving lives as an ER nurse, and Glenn is still protecting the citizenry.
Please continue to pray. I don't feel like I have anything profound to say today, but we are standing in faith and pursuing peace!
It is well.
The schedule has changed by one day since I last posted dates. Nick goes this Friday (Day -7) to have his current life port removed and have a Hickman port installed. He will be checked again on Saturday, then admitted on Sunday to begin treatment. He will get 2 days of high dose chemo, then 3 days of full body radiation. Next Friday, January 20th, he will receive the transplant. Amanda begins her treatment this Saturday and should be finished with her portion by the morning of the 20th.
Amanda, Megan, my sister, Emily, and I are Nick's designated care givers for the 107 days. We will be tag team mothering him. He will not be able to have visitors other than care givers (and Dad) for the first several weeks. After the first week or so we will need to be watching closely for any reactions to the transplant called graft vs. host. He will be on several medications to guard against the reactions, but it will be a miraculous thing if he has no reactions. As long as we keep a close watch and alert the doctors promptly, these reactions can be taken care of with very little drama. If everything goes as planned, he should be reaction free after a year or so. By then his body should be completely converted to Amanda's DNA, and no longer fighting against itself.
He is expected to be in-patient at Vanderbilt for approximately 21 days, then we should move to an apartment close to Vanderbilt for the remainder of the 100 days. We are supposed to gain access to the apartment this week so that family can sleep, rest, shower, wash clothes, and eat there. However, there seems to be some difficulties with the apartment arrangements. Please pray that all of these details will work out peacefully. We do not have access to the accommodations about which we were originally told, but I am just expecting that that means that we will have more of a blessing in store.
For those who have asked, I'll detail a bit of what is going on with the rest of us. I am beginning my second semester in nursing school, and should graduate in May 2013. Amanda will graduate in December 2012.
I am taking only 1 of the 2 clinical courses usually taken at this point, but will make up the shortfall later. This choice will allow me to be at Vanderbilt Thursday evening through Monday evening or Tuesday morning of each week while Nick is there. The other caregivers will cover Tuesday through Thursdays. I am also taking a History course online. I only lack a couple of classes having the prerequisites for pursuing my masters after I complete the RN next May. There will be a lot of sitting and studying time during the next 107 days. Megan is saving lives as an ER nurse, and Glenn is still protecting the citizenry.
Please continue to pray. I don't feel like I have anything profound to say today, but we are standing in faith and pursuing peace!
It is well.
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