Words cannot express my gratitude for everyone's amazing commitment to pray for our family. This blog has been a blessing to me in so many ways, and to hear some of you tell me that it has blessed you is beyond humbling. So many of you have passed along our story and strangers have introduced themselves to me, sharing that they have been reading this blog. This is honestly amazing to me.
This journey has been, for me, so much more than killing cancer. It has been a lesson in trust, which is a word I ponder often these days. Can I really believe the promises of God? Does God punish people? Will He do what I want? What if He doesn't?
It must have been beyond frustrating for Jesus when He would explain over and over who He was and why He came and still people wouldn't trust... even after witnessing miracles. I see myself in these unbelievers and am convicted that I must either fully trust or turn away altogether. Half trusting just doesn't work. I've tried.
I continue to marvel at the many amazing things happening in Kev's body. His levels are normalizing, and he didn't need any platelets on Monday, which was the determining factor for whether or not he could return to work! He is so glad to be doing some normal things again and of course, so am I. :-)
The appointments will become fewer and less frequent now (and so will my blog posts), and he will begin maintenance chemotherapy in October. He is going to start seeing a pain doctor for some palliative care on his back, which he fractured last summer. His hair is starting to grow back, but he's really jonesing for his facial hair to speed up and get growing. (I think he looks cute, but I guess he misses the occasional "you look like Ryan Reynolds" comments).
Since this cancer carries the dreaded label, "incurable," please continue to pray. Pray for a cure. Pray for new drugs to treat this. And pray that the Holy Spirit gives us strength to trust Jesus.
There is so much more I want to say. Maybe another day or a cup of coffee sometime. Thanks for journeying with us, and thanks for caring enough to read my words :-)
Love to you,
Kristin
Tuesday, April 30, 2013
Friday, April 19, 2013
These last 8 months have truly been an indescribable experience. Similar to how I remember things early on in my childhood, certain moments have striking clarity and others play in my mind like a silent movie.
The moment of diagnosis I remember what I was wearing. I remember before the doctor came in I was entertaining the kids by blowing up latex gloves. I remember coming home from the doctor and trying to eat a potato chip then spitting it out because I couldn't swallow. I remember laying down in my closet that day and crying out to Jesus for help.
I remember putting ice packs on Kev's back, feeling so helpless that he was lying awake in pain.
I remember carrying Kev's urine in a milk jug through the streets of downtown Chicago :-). I remember the moment Kev pulled his bow back on the deck, and the day he lifted Bri back onto his shoulders.
I remember the doctor's words, "you earned an A in chemo response." And finally, today, I can remember the words, "Babe, they're releasing me! I'm coming home today."
That's right! He's home!
Following my last post, his levels continued to rise, and today they doubled. Although his ANC isn't at 500 (it's at 100), the doc felt comfortable with him coming home and staying in isolation until Monday--where she feels very confident that his ANC will be at a minimum, 500. I want to put a shout out to Doc Williams for her empathy and willingness to think outside of the box. Doc, you are a blessing to us--truly.
We spent the day playing with the girls and enjoying being together. We literally smiled all day at each other. Considering how much I despise cheesy writing, you all can get an idea of how great today was.
I feel this peace inside me that God knows what He's doing with Kev. There is a song lyric, "before heartache can ever touch my life, it has to go through Your hands." If we need to wait for his levels, we will wait. We will trust You. I cannot pray for healing, then complain about the way God is doing it.
Kev will be visiting the doc weekly for awhile and is now beginning his "post-transplant" lifestyle. This includes no swimming, no raw meat, filtered water, being re-vaccinated (his immune system is like a newborn baby), and no buffets (or any other bacteria-loving area).
In six months he will begin to receive maintenance chemotherapy, which will most likely be a low dose of Velcade either one or two times a month.
It feels good knowing that this is over and that we made it. We killed some cancer, grew some faith, strengthened a marriage, and....well, I could go on for a while here.
God heard our prayers and He shall be given all the glory. Please continue to pray for his blood levels, as well as that this cancer stays in remission for a long, long time. And please promise me something: When heartbreak hits your life, go back to God's promises to us. That He loves. He is wholly good. He will never leave us.
Love to you,
Kristin
ps) Some of you may have noted that keeping Kev's hospital admission dates private became sort of silly when he decided to become famous: http://www.youtube.com/watch?v=zqP3HApcVfo
The moment of diagnosis I remember what I was wearing. I remember before the doctor came in I was entertaining the kids by blowing up latex gloves. I remember coming home from the doctor and trying to eat a potato chip then spitting it out because I couldn't swallow. I remember laying down in my closet that day and crying out to Jesus for help.
I remember putting ice packs on Kev's back, feeling so helpless that he was lying awake in pain.
I remember carrying Kev's urine in a milk jug through the streets of downtown Chicago :-). I remember the moment Kev pulled his bow back on the deck, and the day he lifted Bri back onto his shoulders.
I remember the doctor's words, "you earned an A in chemo response." And finally, today, I can remember the words, "Babe, they're releasing me! I'm coming home today."
That's right! He's home!
Following my last post, his levels continued to rise, and today they doubled. Although his ANC isn't at 500 (it's at 100), the doc felt comfortable with him coming home and staying in isolation until Monday--where she feels very confident that his ANC will be at a minimum, 500. I want to put a shout out to Doc Williams for her empathy and willingness to think outside of the box. Doc, you are a blessing to us--truly.
We spent the day playing with the girls and enjoying being together. We literally smiled all day at each other. Considering how much I despise cheesy writing, you all can get an idea of how great today was.
I feel this peace inside me that God knows what He's doing with Kev. There is a song lyric, "before heartache can ever touch my life, it has to go through Your hands." If we need to wait for his levels, we will wait. We will trust You. I cannot pray for healing, then complain about the way God is doing it.
Kev will be visiting the doc weekly for awhile and is now beginning his "post-transplant" lifestyle. This includes no swimming, no raw meat, filtered water, being re-vaccinated (his immune system is like a newborn baby), and no buffets (or any other bacteria-loving area).
In six months he will begin to receive maintenance chemotherapy, which will most likely be a low dose of Velcade either one or two times a month.
It feels good knowing that this is over and that we made it. We killed some cancer, grew some faith, strengthened a marriage, and....well, I could go on for a while here.
God heard our prayers and He shall be given all the glory. Please continue to pray for his blood levels, as well as that this cancer stays in remission for a long, long time. And please promise me something: When heartbreak hits your life, go back to God's promises to us. That He loves. He is wholly good. He will never leave us.
Love to you,
Kristin
ps) Some of you may have noted that keeping Kev's hospital admission dates private became sort of silly when he decided to become famous: http://www.youtube.com/watch?v=zqP3HApcVfo
Tuesday, April 16, 2013
Today marks 15 full days in the hospital for Kevin. We were so hopeful that the engraftment process would be swift and remarkable, however it is looking like for once Kev is going to do something at a "normal" speed.
Three criteria need to be met prior to discharge from the hospital:
1. Absolute Neutrophil Count (ANC) level of at least 500.
2. No fevers for 24 hours
3. Normal vital signs and normal functional mobility.
I asked the doc today why the ANC column was blank on his bloodwork sheet since it would be nice to gauge how close we are to that 500 mark. She chuckled and said, "well, it's blank because he doesn't have any neutrophils."
<sigh>
It is possible that his blood counts will begin making large leaps in the right direction, but right now they are still very low and creeping up v.e.r.y slowly every day. The doc assured us that this is normal and he is on the right track. They will go up. But how quickly, no one knows for sure. (The doc was also quick to remind us that he received two wicked rounds of DVT-PACE in March. His levels had barely recovered from those rounds when he was hit with the Melphalan).
So there he sits.........
Some of you out there know the feeling of circumstances being LITERALLY out of your control. There are no pills to take, no foods to eat, no physical activities to perform that will assist you in gaining any sort of control over a situation. Where does this leave a person?
Theologian Ravi Zacharius says that the imagination draws from what the eyes focus on. But keeping our eyes unfocused on that ANC column isn't easy....at all.
My musings aside, Kev is doing well. These days "well" needs a context, so I will tell you that he's getting up, showered, and dressed daily. He was able to walk a few laps around the floor today and yesterday. He still has a nice tan from Florida in February and his eyes are bright. He smiles less often, but then again so do I. He is managing his nausea and bone pain with medications that are working fairly well. And aside from the fact that his door is busier than Grand Central Station, he is catching sleep often.
I would like to take a moment to send out a call for prayer to anyone who knows anyone who prays.
Lord, you made neutrophils. You are sovereign over them and over everything on this earth. Set your works in motion to recover his blood levels and restore his health. Give our children your Holy Spirit to comfort them when they miss their daddy. Sometimes I get mad because we didn't deserve this! But I should be thanking you that you don't give me what I do deserve, and that you gave it to Jesus instead. It was the ultimate unfairness, but with it you managed to merge justice with holiness. And for that God, I will worship you. No matter what.
Much love to everyone,
Kristin
Three criteria need to be met prior to discharge from the hospital:
1. Absolute Neutrophil Count (ANC) level of at least 500.
2. No fevers for 24 hours
3. Normal vital signs and normal functional mobility.
I asked the doc today why the ANC column was blank on his bloodwork sheet since it would be nice to gauge how close we are to that 500 mark. She chuckled and said, "well, it's blank because he doesn't have any neutrophils."
<sigh>
It is possible that his blood counts will begin making large leaps in the right direction, but right now they are still very low and creeping up v.e.r.y slowly every day. The doc assured us that this is normal and he is on the right track. They will go up. But how quickly, no one knows for sure. (The doc was also quick to remind us that he received two wicked rounds of DVT-PACE in March. His levels had barely recovered from those rounds when he was hit with the Melphalan).
So there he sits.........
Some of you out there know the feeling of circumstances being LITERALLY out of your control. There are no pills to take, no foods to eat, no physical activities to perform that will assist you in gaining any sort of control over a situation. Where does this leave a person?
Theologian Ravi Zacharius says that the imagination draws from what the eyes focus on. But keeping our eyes unfocused on that ANC column isn't easy....at all.
My musings aside, Kev is doing well. These days "well" needs a context, so I will tell you that he's getting up, showered, and dressed daily. He was able to walk a few laps around the floor today and yesterday. He still has a nice tan from Florida in February and his eyes are bright. He smiles less often, but then again so do I. He is managing his nausea and bone pain with medications that are working fairly well. And aside from the fact that his door is busier than Grand Central Station, he is catching sleep often.
I would like to take a moment to send out a call for prayer to anyone who knows anyone who prays.
Lord, you made neutrophils. You are sovereign over them and over everything on this earth. Set your works in motion to recover his blood levels and restore his health. Give our children your Holy Spirit to comfort them when they miss their daddy. Sometimes I get mad because we didn't deserve this! But I should be thanking you that you don't give me what I do deserve, and that you gave it to Jesus instead. It was the ultimate unfairness, but with it you managed to merge justice with holiness. And for that God, I will worship you. No matter what.
Much love to everyone,
Kristin
Tuesday, April 9, 2013
The transplant process was fairly undramatic considering the gravity of what it will bring to us. Following admission last Tuesday, Kev was administered high dose Melphalan, one of the oldest chemo agents out there. This stuff is nasty. It's actually a derivative of mustard gas. The Melphalan kills all of the cells inside his bone marrow, unfortunately even the good guys. It takes about 5 days to start feeling the effects, much of the side effects being from his blood counts dropping steadily. Once his levels "bottom out" (most likely tomorrow) his body will begin the engraftment process with his healthy stem cells.
His stem cells were administered intravenously over about a 20 minute period.
And now..... we wait.
Hospitals are truly dreadful places. Beige walls, uncomfortable beds, constant interruptions while resting. Not to mention bad coffee. The coping skill of distraction isn't readily available and thus begins the struggles with discouragement. On days when the fight is fair and his blood levels are normal (and he isn't withdrawing from steroids. Steroids are Kev's new "S" word), he can keep a healthy balance of positivity. However, when the latter is the reality he has to literally battle with himself to keep going........to get up and make some laps around the floor, or to eat yet another cup of the delightful protein pudding.
Kev mentioned something to me a couple of days ago that has stuck with me. The thought of "looking over his shoulder" for the rest of his life for the myeloma to return isn't something he dreads. He can almost welcome this as a blessing in that it serves to keep him rooted in his priorities. What Kev prays for is a LONG LIFE. A chance to raise our children. The daring hope to meet his grandchildren.
Matthew tells us in chapter 7: If you then, who are sinful, know how to give good gifts to your children, how much more will your father in Heaven give to those who ask Him.
This truth is so humbling and so rich with God's mercy. I love this verse.
So far everything is going as it should. We expected this to be a "necessary evil" (as pretty much all cancer treatment is) but it is still hard to live this. Please pray that this is the end of treatment for a long long time. Also, we've had the girls up to visit twice.... pray that this will be no more than a distant blip on their life radar.
The truth that God doesn't waste ANY suffering is, at times, comforting, but also unbelievable. Lord, give us strength in times of unbelief.
Please don't hesitate to contact me regarding visits. He is moving into a period where visitors will need to wear masks and be healthy prior to entering his room, but hopefully his levels will rebound quickly and this won't last long.
Kev says a heartfelt THANK YOU to all who are praying for him and thinking of him. I want to tell everyone how much I appreciate your loving support for our family.
God bless all of you.
Kristin
His stem cells were administered intravenously over about a 20 minute period.
And now..... we wait.
Hospitals are truly dreadful places. Beige walls, uncomfortable beds, constant interruptions while resting. Not to mention bad coffee. The coping skill of distraction isn't readily available and thus begins the struggles with discouragement. On days when the fight is fair and his blood levels are normal (and he isn't withdrawing from steroids. Steroids are Kev's new "S" word), he can keep a healthy balance of positivity. However, when the latter is the reality he has to literally battle with himself to keep going........to get up and make some laps around the floor, or to eat yet another cup of the delightful protein pudding.
Kev mentioned something to me a couple of days ago that has stuck with me. The thought of "looking over his shoulder" for the rest of his life for the myeloma to return isn't something he dreads. He can almost welcome this as a blessing in that it serves to keep him rooted in his priorities. What Kev prays for is a LONG LIFE. A chance to raise our children. The daring hope to meet his grandchildren.
Matthew tells us in chapter 7: If you then, who are sinful, know how to give good gifts to your children, how much more will your father in Heaven give to those who ask Him.
This truth is so humbling and so rich with God's mercy. I love this verse.
So far everything is going as it should. We expected this to be a "necessary evil" (as pretty much all cancer treatment is) but it is still hard to live this. Please pray that this is the end of treatment for a long long time. Also, we've had the girls up to visit twice.... pray that this will be no more than a distant blip on their life radar.
The truth that God doesn't waste ANY suffering is, at times, comforting, but also unbelievable. Lord, give us strength in times of unbelief.
Please don't hesitate to contact me regarding visits. He is moving into a period where visitors will need to wear masks and be healthy prior to entering his room, but hopefully his levels will rebound quickly and this won't last long.
Kev says a heartfelt THANK YOU to all who are praying for him and thinking of him. I want to tell everyone how much I appreciate your loving support for our family.
God bless all of you.
Kristin
Tuesday, April 2, 2013
Kevin web Q &A through Spectrum Health April 3rd at 10am.
The letter below was written by Spectrum Health Marketing and it provides some good information about their new Adult BMT program. Kevin was asked to be part of a web Q & A tomorrow (Wednesday 4/3)at 10am.
Here are the instructions for accessing the Google Hangout:
According to Lee Ann Weitekamp, MD, vice president, quality and medical services, Michigan Blood, “Our staff and specialty laboratories provide tissue typing for patients and potential donors, special blood components to meet patients’ needs during the transplant process, blood stem cell collection through the apheresis process and the processing, labeling, freezing, and storage of blood stem cells for future transplantation.”
Michigan Blood also operates Michigan’s first public cord bank, one of 20 in the nation, and is affiliated with the National Marrow Donor Program’s (NMDP) Be the Match® Registry.
“Patients turn to the Registry for help in finding a donor match when they cannot do autologous transplant or one from a family member,” explained Dr. Weitekamp.
“West Michigan is extremely fortunate to have the Spectrum Health Adult BMT Program available in our community. Our team has worked closely with both the adult and pediatric BMT specialists to provide blood stem cell matches. We have observed first-hand the benefit to patients and their families of having this exceptional, high level of treatment available in our community, rather than having to travel longer distances.”
Spectrum Health is a not-for-profit health system in West Michigan offering a full continuum of care through the Spectrum Health Hospital Group, which is comprised of nine hospitals including Helen DeVos Children’s Hospital, a state of the art children’s hospital that opened in January 2011, and 140 service sites; the Spectrum Health Medical Group and West Michigan Heart, physician groups totaling more than 700 providers; and Priority Health, a health plan with 600,000 members. Spectrum Health is West Michigan’s largest employer with 19,000 employees. The organization provided $204 million in community benefit during its 2012 fiscal year.
Here are the instructions for accessing the Google Hangout:
- When the broadcast begins on Wednesday at 10 AM, visit the Google+ Event Page:http://bit.ly/10nrTQS.
- It may prompt you to log in to Google Plus. Sign in or click the “Create an Account” button in the upper right hand corner.
- A video will appear on this page, click the play button and the broadcast will begin streaming.
Spectrum
Health Adult Bone Marrow Transplant Program Offers Treatment Closer To Home
GRAND RAPIDS, Mich., April
3, 2013 –
West Michigan adults who need a blood or bone marrow transplant (BMT) to help
them in their fight against cancer can now receive treatment nearer to home.
The
new Spectrum Health Adult BMT Program began performing
transplants on February 25, 2013. The third BMT patient, Kevin VanZanten, 34,
of Allendale, is scheduled to receive his transplant later today. Spectrum
Health anticipates performing up to 50 adult transplants in the next year.
VanZanten
will share his thoughts about his upcoming procedure in a Google+ Hangout today at 10 a.m.
EST.
There
are four adult BMT programs in Michigan. Spectrum Health offers the only adult
BMT program in the western half of Michigan. While this is the first adult
program in the area, Helen DeVos Children’s Hospital has been providing blood
and marrow transplants since 1998.
The
transplants are a treatment option for patients who have cancer, immune system
disorders, metabolic disease and other life-threatening conditions. The adult
program BMTs are performed by Stephanie F. Williams, MD, division chief, adult blood
and marrow transplant program, Spectrum Health Medical Group.
“Spectrum
Health is initially focusing on doing transplants for patients with lymphoma,
leukemia, multiple myeloma and myelodysplastic syndrome (MDS),” said Dr. Williams.
“A transplant offers many of these patients real hope to get back to their
lives.”
So
far, the BMT patients have received autologous transplants, meaning that their
own blood stem cells are used. Unrelated, or allogeneic, transplants are
expected to begin later this year.
A local
program for adults has been welcomed by patients awaiting a transplant.
“The typical patient can spend up to a month in the hospital. They
continue their recovery in a protected environment for another two months and
then return frequently for check-ups,” explains Williams. “This is a tough
experience to go through alone. Having to travel far and stay away so long
after a transplant has been emotionally difficult, disruptive and expensive for
our cancer patients and their families.”
According to Lee Ann Weitekamp, MD, vice president, quality and medical services, Michigan Blood, “Our staff and specialty laboratories provide tissue typing for patients and potential donors, special blood components to meet patients’ needs during the transplant process, blood stem cell collection through the apheresis process and the processing, labeling, freezing, and storage of blood stem cells for future transplantation.”
Michigan Blood also operates Michigan’s first public cord bank, one of 20 in the nation, and is affiliated with the National Marrow Donor Program’s (NMDP) Be the Match® Registry.
“Patients turn to the Registry for help in finding a donor match when they cannot do autologous transplant or one from a family member,” explained Dr. Weitekamp.
“West Michigan is extremely fortunate to have the Spectrum Health Adult BMT Program available in our community. Our team has worked closely with both the adult and pediatric BMT specialists to provide blood stem cell matches. We have observed first-hand the benefit to patients and their families of having this exceptional, high level of treatment available in our community, rather than having to travel longer distances.”
The multidisciplinary BMT team at Spectrum Health evaluates adult
recipients for blood and marrow transplantation and provides care before,
during and after transplant.
Dr. Williams started building the adult BMT program, which involves
everyone from specially-trained infusion nurses to quality specialists, soon
after joining Spectrum Health last September.
The pediatric BMT program at Helen DeVos Children’s Hospital is under
the direction of Aly Abdel-Mageed, MD, and Ulrich Duffner, MD. It is one of
three in Michigan and is also the only program in the western half of the
state.
Spectrum Health is a not-for-profit health system in West Michigan offering a full continuum of care through the Spectrum Health Hospital Group, which is comprised of nine hospitals including Helen DeVos Children’s Hospital, a state of the art children’s hospital that opened in January 2011, and 140 service sites; the Spectrum Health Medical Group and West Michigan Heart, physician groups totaling more than 700 providers; and Priority Health, a health plan with 600,000 members. Spectrum Health is West Michigan’s largest employer with 19,000 employees. The organization provided $204 million in community benefit during its 2012 fiscal year.
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