Nate had an appointment at Northwestern in October that was uneventful. His lab work is looking good and he will go back in 6 months, which will put him at 1 year post-transplant. He will also have a PET scan done before that visit.
He had his rituxan infusion today and saw the doctor. The infusion only took 3 hours- a new record. The doctor said the new recommendation from the MCL experts is rituxan every 2 months for 3 years instead of 2 years. He feels okay about that, just 3 years seems like a long time. Thankfully the rituxan doesn't cause side effects and is easy to tolerate. Please continue to pray that the rituxan does its thing and keeps the cancer away.
Family
Tuesday, November 7, 2017
Thursday, September 21, 2017
Cancer-cation
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| No One Fights Alone |
A couple weekends ago our family went to Great Wolf Lodge in Traverse City, MI. It is a hotel/indoor waterpark that our kids have always wanted to visit. An organization called Shields of Hope West Michigan gave 30 families affected by cancer a fantastic vacation. Shields of Hope is comprised of police officers, fire fighters and EMS workers who want to encourage families dealing with cancer- to let them know that no one fights alone. All of the details were taken care of- the kids loved the superhero outfits and we had a fun hotel room with a kid bunkroom built in. Of course the waterpark was a huge hit. There were also break out sessions led by professionals. The kid sessions were a good mix of fun and helpful but not super heavy.
I attended the caregiver group and it was rough. We had a fun game and then they hauled out kleenex boxes- I knew it was not a good sign. Listening to 30 people's stories for about 2 hours emotionally drained me. I can't hold that much pain and then jump back into having fun with the kids. (I suggested to the organization that they split such a large group into smaller sections next time.) The whole weekend was fun and hard. Our family missed vacations last year and it was good to have fun together. It was also difficult to share our story again- to relive the fear and struggle. Our family just wants to move on to normalcy- let's forget this past year even happened, ok? But that is not our reality. And the reality is the fear and uncertainty about the future will never truly disappear. It was difficult to be with that many families walking the cancer road. To look at a little boy and think- he will not be alive this time next year. Or that woman will be a widow by next year. And there is also the odd dynamic of feeling almost guilty when you can say- my spouse is in remission. Because you see and hear the awfulness other people are experiencing and you think thank God it's not us, but you feel guilty for thinking that too.
Nate also had his first rituxan treatment. There were some issues with getting the treatment that day- the infusion nurses are great, but the other staff members at this office are not fantastic. Nate was at the cancer center for about 6 hours and the infusion went smoothly. It was hard to walk back into the chemo area. I could feel the fear rising up again along with memories of previous treatments. Thankfully rituxan doesn't give Nate any side effects and he feels good.
Nate has a follow up appointment at Northwestern in October and then rituxan in November. Hopefully this blog will be quiet in the meantime.
Thursday, August 31, 2017
Maintenance
After the appointment with our local oncologist, we reached out to Mayo Clinic and a doctor at Washington University about maintenance chemo. (And I am impressed by Dr. Kahl from Washington University. We cornered him at a lymphoma conference last year to ask about treatment recommendations. He told us then to reach out anytime. I wasn't sure he would respond to our email about maintenance chemo, but he responded within hours. So kind.) Both doctors said just rituxan, no chemo. Having 3 doctors give the same advice made Nate's decision easier. Nate will begin rituxan treatments on September 12. He will receive rituxan once every 2 months for 2 years.
And if you are curious about what rituxan is- rituxan is a drug used to disintegrate tumor cells and hopefully prevent the production of more tumor cells. Nate received rituxan during his chemo treatments and did not have reactions to it, so we are hoping these rituxan treatments will be relatively easy. And we are praying these treatments prevent the cancer from returning.
Nate is feeling great. His hair is coming in curly, which we both find funny. Quite a few people who haven't seen him in a while do a double take. They expect to see hairless, sick looking Nate and instead see a healthy guy with a full head of hair and a beard. Thank you God.
A couple weeks ago I prayed during church. As I stood in front of the congregation I told them, this was the first time since last fall that Nate was back doing sound and I was leading a prayer. Small things, but signs of normalcy. I shared this passage during the prayer and of course cried through it. It's a standing joke now at church that when Stacy prays, expect her to cry. It's embarrassing, but I'm ok with that.
Psalm 30:1-5, 11-12
"I will exalt you Lord, for you lifted me out of the depths and did not let my enemies gloat over me. Lord my God, I called to you for help, and you healed me. You, Lord, brought me up from the realm of the dead; you spared me from going down to the pit. Sing the praises of the Lord, you his faithful people; praise his holy name. For his anger lasts only a moment, but his favor lasts a lifetime; weeping may stay for the night, but rejoicing comes in the morning... You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing your praises and not be silent. Lord my God, I will praise you forever."
Labor Day weekend last year is when this nightmare began. Right before that weekend Nate was told, your blood test shows you might have leukemia. And then began the awful waiting to figure out what kind of cancer Nate had/how bad it was/treatment options and so forth. It is painful to remember this past year. Another friend who has cancer sat down with me at this time last year. She remembers me asking, "how are we going to get through this?" Her response was, "you just do." And that is the truth. Somehow you just get through it. It is unbelievably hard and there are some good moments and you lose yourself to fear and ask friends to pray for you because you don't know what to pray for. And then, thank you Jesus, you are standing on the other side. Feeling shell shocked, but you are on the other side. And praying desperately that research is wrong and that this cancer will never come back.
Right now I am in a season of introspection. Just processing this past year and what if anything, I can learn from it. I also have a sense of urgency. That I need to use this reprieve from cancer wisely. I need to shore myself up and our family. That the battle is coming for us again, so in the meantime I want to work on those parenting and marriage skills I've put off, read books, take family trips, and be ok with uncertainty about the future. Ha! Being ok with uncertainty will be a lifelong lesson. Part of me feels vulnerable even sharing those thoughts. Like somehow I'm being pessimistic or living in fear. But, I also want to live into the reality of cancer. Life is unpredictable and fragile.
Thank you for continuing to pray for and encourage our family. We are blessed by you all.
-Stacy
And if you are curious about what rituxan is- rituxan is a drug used to disintegrate tumor cells and hopefully prevent the production of more tumor cells. Nate received rituxan during his chemo treatments and did not have reactions to it, so we are hoping these rituxan treatments will be relatively easy. And we are praying these treatments prevent the cancer from returning.
Nate is feeling great. His hair is coming in curly, which we both find funny. Quite a few people who haven't seen him in a while do a double take. They expect to see hairless, sick looking Nate and instead see a healthy guy with a full head of hair and a beard. Thank you God.
A couple weeks ago I prayed during church. As I stood in front of the congregation I told them, this was the first time since last fall that Nate was back doing sound and I was leading a prayer. Small things, but signs of normalcy. I shared this passage during the prayer and of course cried through it. It's a standing joke now at church that when Stacy prays, expect her to cry. It's embarrassing, but I'm ok with that.
Psalm 30:1-5, 11-12
"I will exalt you Lord, for you lifted me out of the depths and did not let my enemies gloat over me. Lord my God, I called to you for help, and you healed me. You, Lord, brought me up from the realm of the dead; you spared me from going down to the pit. Sing the praises of the Lord, you his faithful people; praise his holy name. For his anger lasts only a moment, but his favor lasts a lifetime; weeping may stay for the night, but rejoicing comes in the morning... You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing your praises and not be silent. Lord my God, I will praise you forever."
Labor Day weekend last year is when this nightmare began. Right before that weekend Nate was told, your blood test shows you might have leukemia. And then began the awful waiting to figure out what kind of cancer Nate had/how bad it was/treatment options and so forth. It is painful to remember this past year. Another friend who has cancer sat down with me at this time last year. She remembers me asking, "how are we going to get through this?" Her response was, "you just do." And that is the truth. Somehow you just get through it. It is unbelievably hard and there are some good moments and you lose yourself to fear and ask friends to pray for you because you don't know what to pray for. And then, thank you Jesus, you are standing on the other side. Feeling shell shocked, but you are on the other side. And praying desperately that research is wrong and that this cancer will never come back.
Right now I am in a season of introspection. Just processing this past year and what if anything, I can learn from it. I also have a sense of urgency. That I need to use this reprieve from cancer wisely. I need to shore myself up and our family. That the battle is coming for us again, so in the meantime I want to work on those parenting and marriage skills I've put off, read books, take family trips, and be ok with uncertainty about the future. Ha! Being ok with uncertainty will be a lifelong lesson. Part of me feels vulnerable even sharing those thoughts. Like somehow I'm being pessimistic or living in fear. But, I also want to live into the reality of cancer. Life is unpredictable and fragile.
Thank you for continuing to pray for and encourage our family. We are blessed by you all.
-Stacy
Thursday, August 10, 2017
Relief
Nate had an ultrasound of his thyroid and we met with our local oncologist today for the results. There is an enlarged nodule, but it is not worrisome. The doctor will do another ultrasound in 6 months. We were so relieved! Personally, I think waiting for results is one of the hardest parts. I fluctuated between thinking this ultrasound was no big deal and oh my goodness our world could get rocked again. Cancer has taken away my ability to be laid back about these type of things.
We also spent the appointment talking with the oncologist about maintenance chemo. He had a different take than Northwestern, which is both maddening and helpful. Sometimes I wish all doctors agreed about treatment because our decisions would be easier. But, it is helpful to have doctors with differing perspectives so we can better understand treatment benefits and costs. The doctor took our concerns and questions seriously. I may have left him a list of questions a couple days before the appointment so we could make the most of this time... :) We came away with slightly more clarity about maintenance chemo and how Nate wants to proceed. We are going to reach out to Mayo Clinic as well to get their perspective.
We are so thankful for Nate's health and healing. We ask that you pray for wisdom regarding maintenance chemo.
We also spent the appointment talking with the oncologist about maintenance chemo. He had a different take than Northwestern, which is both maddening and helpful. Sometimes I wish all doctors agreed about treatment because our decisions would be easier. But, it is helpful to have doctors with differing perspectives so we can better understand treatment benefits and costs. The doctor took our concerns and questions seriously. I may have left him a list of questions a couple days before the appointment so we could make the most of this time... :) We came away with slightly more clarity about maintenance chemo and how Nate wants to proceed. We are going to reach out to Mayo Clinic as well to get their perspective.
We are so thankful for Nate's health and healing. We ask that you pray for wisdom regarding maintenance chemo.
Tuesday, July 18, 2017
Pet scan
Nate had a PET scan and bone marrow biopsy done at Northwestern last week. The PET scan brings up anxiety for me. I felt confident it would be clear, but the reality is you just never know. The PET scan is annoying, but not painful for Nate. The bone marrow biopsy was quite painful this time. I have watched his other bone marrow biopsies, but this one shook me up. I hate that he has to do all of this medical stuff. It makes me angry that these appointments are just part of his life. This was his third biopsy in 8 months. That sucks. We both hope he never has to do another one. Nate's blood work looks good, his numbers are continuing to rise. His next appointment at NW is in 3 months- that's encouraging! And the next PET scan is in 6 months.
The Northwestern Dr wants Nate to begin maintenance chemo next month. He recommends once/month chemo for 2 years. I was a little peeved with the Northwestern Dr at this visit. He did not seem to take our questions and concerns about maintenance chemo very seriously. I left the appointment wondering, "who is our Dr that is on our side? Who will listen to our concerns about quality of life and chemo and cancer?" Our Northwestern Dr is a stem cell transplant Dr and now that we are past that, maybe he views his work as done? I don't know. We know that we are going to do some research about maintenance chemo, talk to our local oncologist and reach out to Mayo Clinic for some direction too.
We got the PET scan results and there is no evidence of lymphoma! That is great news. There was some kind of abnormal activity near Nate's thyroid so he needs an ultrasound done to figure out what is going on there. Please pray it is nothing serious. The initial bone marrow results also show no evidence of lymphoma!
Nate has been feeling great. He is working and just doing normal life. He gets tired a little more easily, but not enough to negatively impact his life. Our family has been enjoying a fun summer of vacations and spending time with family/friends. I am so grateful.
Personally, I am getting to a better place. For about 6 weeks there I felt like I was clawing my way out of a hole. I just felt hopeless when I thought about the future. I was depressed and trying to process everything that happened and the losses we have sustained. Taking an anti-depressant and talking with a counselor has helped me feel more level. The road ahead is unknown, but I am feeling more grounded.
Please pray for a clear thyroid ultrasound and for wisdom regarding maintenance chemo.
The Northwestern Dr wants Nate to begin maintenance chemo next month. He recommends once/month chemo for 2 years. I was a little peeved with the Northwestern Dr at this visit. He did not seem to take our questions and concerns about maintenance chemo very seriously. I left the appointment wondering, "who is our Dr that is on our side? Who will listen to our concerns about quality of life and chemo and cancer?" Our Northwestern Dr is a stem cell transplant Dr and now that we are past that, maybe he views his work as done? I don't know. We know that we are going to do some research about maintenance chemo, talk to our local oncologist and reach out to Mayo Clinic for some direction too.
We got the PET scan results and there is no evidence of lymphoma! That is great news. There was some kind of abnormal activity near Nate's thyroid so he needs an ultrasound done to figure out what is going on there. Please pray it is nothing serious. The initial bone marrow results also show no evidence of lymphoma!
Nate has been feeling great. He is working and just doing normal life. He gets tired a little more easily, but not enough to negatively impact his life. Our family has been enjoying a fun summer of vacations and spending time with family/friends. I am so grateful.
Personally, I am getting to a better place. For about 6 weeks there I felt like I was clawing my way out of a hole. I just felt hopeless when I thought about the future. I was depressed and trying to process everything that happened and the losses we have sustained. Taking an anti-depressant and talking with a counselor has helped me feel more level. The road ahead is unknown, but I am feeling more grounded.
Please pray for a clear thyroid ultrasound and for wisdom regarding maintenance chemo.
Sunday, July 2, 2017
Article from the Holland Sentinel
The following article ran in our local newspaper. We are humbled that Graafschap church chose to bless our family. Honestly, it was hard for Nate and I to accept this offer of support. But, this journey has stretched us and challenged us to accept support in various forms. If you are around on the morning of the 4th, come have some fun with us!
On the Fourth of July, the Graafschap Christian Reformed Church will hold its annual Summerfest community event to benefit a family in need.
On the Fourth of July, the Graafschap Christian Reformed Church will host its annual Summerfest community event to benefit a family in need.
This year’s event will benefit the DeMaster family of Holland. Nate DeMaster, a husband and father of five, was diagnosed with mantle cell lymphoma in October.
DeMaster went through chemotherapy and had a stem cell transplant in April at Northwestern Hospital in Chicago.
Since then, he has recovered and is cancer free at the moment.
“The sticky thing is his type of cancer tends to come back eventually,” said Stacy DeMaster, Nate’s wife. “It’s just one of those unknowns about the future.”
All of the money raised during the event will be donated to the DeMaster family. Stacy DeMaster said the family could use it for a number of things ranging from future medical expenses to college tuition.
The DeMaster family attends the Faith Christian Reformed Church and have children at Holland Christian Schools. Stacy DeMaster said people from their own church and schools have stepped up to help out, but it was nice to receive support from people at Graafschap Christian Reformed Church as well.
“They really rallied around our family the past year and it was great just to have another group of people want to help us,” Stacy DeMaster said.
Summerfest will take place 9 a.m.-1 p.m. Tuesday, July 4, at Graafschap Christian Reformed Church and will include animals from Critter Barn, a car show, a garden tractor pull, kid’s games, barrel train rides for the kids and lunch. There also will be a DJ at the event.
Cindy Michielsen, secretary for the church, said the church uses the event to raise money for a family or a cause every year.
In addition, longtime member of the church Bob Busscher has been appointed mayor for the day during the event.
Busscher said he has been attending the church his whole life and is “quite honored.”
Michielsen said the event will be good for the community.
“We want to help out a family in the community and bring people together for a fun family event,” Michielsen said.
Tuesday, June 13, 2017
Another good report
Nate had a NW appointment today. His white blood cell count stayed the same, but his platelets and hemoglobin are rising. The doctor is pleased with how Nate is doing. Good news! We return to NW in one month for re-staging. Basically they want a new baseline after the stem cell transplant and to verify the cancer is gone. So Nate will need a bone marrow biopsy and PET scan done at that appointment.
The doctor gave the go ahead for Nate to swim again-that makes our summer more enjoyable! Nate is back working full time and feeling good. We also went camping this past weekend- one of Nate's favorite activities. We are thankful for Nate's health and a feeling of normalcy in our family life.
The doctor gave the go ahead for Nate to swim again-that makes our summer more enjoyable! Nate is back working full time and feeling good. We also went camping this past weekend- one of Nate's favorite activities. We are thankful for Nate's health and a feeling of normalcy in our family life.
Thursday, June 1, 2017
Update Time
Nate had an appointment at NW this past Tuesday. These appointments are annoying more than stressful. Construction thru Indiana is not cool and we had to wait 1.5 hours to see the doctor. However, it was a good report! Some of Nate's counts are trending upward. His white blood cells and ANC are trending down a little, but the doctor was not concerned. Nate's energy is increasing and he feels the best he has in months. The doctor gave the all clear for Nate to return to work next week. Nate does not need to wear a mask in public anymore, but the Dr suggested carrying one for when he encounters a person with a cold, etc. And Nate's hair is slowly re-growing!
Please continue to pray for Nate's immune system to strengthen. We are so thankful that he is feeling good and recovering well. We will go back to NW in 2 weeks for another follow up.
Our kids have their last day of school tomorrow. I can not believe we are at this point. This cancer journey began Labor Day weekend, just when school began. This school year has been unbelievably stressful and chaotic. I am praying fervently that next school year is mundane! I am deeply grateful for our teachers this year. They walked our kids thru the scariest year of their lives. They prayed, loved, gave our kids space to emote (or not), and encouraged our family along the way. Our kids thrived this year, not just survived. And I am teary with gratitude. Thank you for walking this journey with our family.
And please pray I survive summer with the kids. Ha!
Please continue to pray for Nate's immune system to strengthen. We are so thankful that he is feeling good and recovering well. We will go back to NW in 2 weeks for another follow up.
Our kids have their last day of school tomorrow. I can not believe we are at this point. This cancer journey began Labor Day weekend, just when school began. This school year has been unbelievably stressful and chaotic. I am praying fervently that next school year is mundane! I am deeply grateful for our teachers this year. They walked our kids thru the scariest year of their lives. They prayed, loved, gave our kids space to emote (or not), and encouraged our family along the way. Our kids thrived this year, not just survived. And I am teary with gratitude. Thank you for walking this journey with our family.
And please pray I survive summer with the kids. Ha!
Tuesday, May 16, 2017
Feeling good
Nate had an appointment at NW on Monday. The Dr is pleased with his counts and said come back in two weeks! The visiting nurse will come once a week until the NW appointment. His platelets have increased on their own and the neulasta bumped up his white blood cells. The neulasta effect wears off around Friday, so let's pray his white blood cells still stay strong. It was so encouraging to have a good Dr visit. Nate is feeling good, the general malaise feeling has lifted and his energy is increasing. He still gets tired and needs to rest, but overall he is doing well. Nate still needs to be careful about crowds and germs.
Wednesday, May 10, 2017
Northwestern Update
Nate had an appointment with his transplant doctor yesterday. We were told that Nate's counts should be higher at this point. The doctor prescribed a neulasta shot to boost his white blood cells to hopefully get him thru these last weeks of viruses floating around the community. The visiting nurse will come twice more this week and then back to NW on Monday.
This appointment was a little discouraging. Basically Nate's body needs to kick into gear and make his immune system stronger.
This appointment was a little discouraging. Basically Nate's body needs to kick into gear and make his immune system stronger.
Sunday, May 7, 2017
Holding Pattern
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| 5k last May |
Today is Sunday and it has been a quiet weekend around here. We will take quiet. The nurse took Nate's labs on Friday and his numbers were stable. Nate is feeling decent, just tired. He is able to attend the kids games because they are outside and he does not need to interact with many people. He wore a mask, snuck into church late and left early to avoid the crowds.
I have been more reflective these past days, maybe because life is quiet, well as quiet as our life can be. People ask how we are doing, how I am doing? We are thankful Nate is home, that he can be outside, that our family is together, that his counts are stable right now. But honestly, this journey has taken a toll. The above picture came up on my FB memories today and it makes me cry. We ran a 5k on this day last year. Look how healthy Nate looks. Both Nate and I wonder, when will he get his hair back? Will he look healthy again? Nate will say, right now he feels old, much older than 37.
And this journey has taken its toll on me. I am losing my hair, more than is normal. Stress induced hair loss is a thing, who knew? I love my husband, but I do not want to lose my hair in solidarity! (And if you have knowledge on how to regrow hair, send me a note.) I also had to talk with my Doctor about finding a med to help me turn off my brain at night, so I can sleep. And this past week I am so tired, I feel like I could nap all day. I wonder if the adrenaline and stress of the past months is catching up with my body, exhaustion is setting in. The wonderful(?) thing about kids is they force you to keep moving.
We have an appointment at NW on Tuesday and the nurse will continue to come a couple times/week to check Nate's blood counts. So we continue to pray for quiet, healing weeks. And that my hair stops falling out, ha!
Tuesday, May 2, 2017
Nate is home
On Tuesday morning, Nate's blood counts rose dramatically. The Dr said it probably meant his counts were on the upswing, but the shots helped quite a bit. He received platelets and was discharged this afternoon! We are so thankful he is home. Now we are waiting for an appointment at Northwestern sometime this week or next.
Please continue to pray for health and rising blood counts. Thank you for your prayers and messages of love and encouragement.
Please continue to pray for health and rising blood counts. Thank you for your prayers and messages of love and encouragement.
Monday, May 1, 2017
Still in the hospital...
It is Monday and we were really hoping Nate would be discharged today. But, his counts tanked again. Gah!! The fever was gone as of Saturday. The blood cultures are negative for infection. Northwestern is saying Nate will probably stay in the (Holland) hospital until Wednesday. They want his ANC back to .5. In the meantime he will continue to receive antibiotics to prevent infection. He will be tested for a virus, receive immunoglobin and get neupogen shots again to boost his immune system.
This hospital stay is mentally and emotionally taxing. It is so frustrating for Nate to be back in the hospital. It is frustrating for all of us. Please pray for patience, for friends to keep boredom at bay, for our family dynamics. Please pray that his ANC rises again!
This hospital stay is mentally and emotionally taxing. It is so frustrating for Nate to be back in the hospital. It is frustrating for all of us. Please pray for patience, for friends to keep boredom at bay, for our family dynamics. Please pray that his ANC rises again!
Saturday, April 29, 2017
Back in the Hospital
Nate's white blood cells and ANC were too low on Friday morning, so Northwestern prescribed antibiotics. On Friday night he came down with a fever and NW said to go to the Holland ER. His fever did not go down, so NW said he should be admitted. They put him on strong antibiotics and he will stay in the hospital until the blood culture results come in- checking for infections.
This is very frustrating for Nate. Please pray for no infections, for good blood counts and for patience during another hospital stay. We are weary.
Tuesday, April 25, 2017
Home!
Nate came home today! We are so grateful and amazed. On Monday his ANC jumped from 0 to .4, we couldn't believe it. The doctor told Nate unless he developed a fever or something, he would go home on Tuesday. We held our breath and this morning his ANC was 1.2! Nate was discharged and home in time for Lexi's birthday supper. Such a wonderful surprise.
There will be a home health nurse coming a couple times a week to check Nate's blood counts. We go back to Northwestern on Monday for a follow up appointment. These next two weeks are the most critical for Nate's immune system. We have to take certain precautions, such as the kids changing clothes after school and washing hands often. Nate will have his own chair in the family room that the kids needs to stay away from and we will keep our bedroom a kid free (aka- germ free) zone. We have to clean fruits and vegetables in a water/vinegar solution and cook everything well. He needs to stay away from crowds. No gardening or working in the yard. You should have seen me tonight. I was pulling out of the driveway and Nate was outside with the kids. He bent down and picked a weed. Oh yes, I yelled across the neighborhood- put that down and go wash your hands!! Ha, he loves me.
Tonight we will be joyful- he is home and one more hurdle is behind us. We can not truly express our gratitude for the love you all have poured out on our family. We could never walk this journey on our own.
Please pray for Nate's counts to continue to rise, that his immune system will strengthen. Please pray for no sicknesses! Pray for our family as we adjust to the precautions needed. And pray for our family as we try to re-adjust our roles and hopefully return to a "normal" routine again.
Sunday, April 23, 2017
Day +10
Where to start?? Beginning on Friday, Nate's doctor told him that he was doing quite well. If his absolute neutrophil count (ANC) hit .5, he could possibly go home on Monday. At that point his ANC was "too low to count," but the doctor told us sometimes the counts can rebound quickly. So we began praying and kind of getting excited that maybe he would be home by Lexi's birthday on Tuesday! On Saturday, some of his numbers crept upward, which got me all excited- that's a sign the stem cell transplant worked! However, the ANC number came in later that day and it was still "too low to count." So technically we did not know if the stem cells were engrafting yet, but the doctor was not concerned. For a couple days now, Nate has had very low blood pressure in the mornings so they give him electrolytes. On Saturday evening he had intestinal issues and developed a fever overnight.
This morning he was put on antibiotics and it takes two days for blood culture results. Once a patient has a fever the doctor automatically has to check for infections and puts the patient on antibiotics. When you do not have an immune system, infections are no bueno. Nate also received platelets and blood today as his numbers were too low. His ANC count today was 0. Apparently 0 is slightly better than "too low to count." We are praying hard that Monday morning shows an actual number for his ANC.
And (one) of the crazy parts of this process is that the doctor is not overly concerned. He assures us that fevers, electrolyte imbalances and bottomed out counts are all normal. He understands this process can move at a snail's pace, but that it's normal and Nate will keep improving. Dear God, please let it be so.
These past couple days have put us thru the emotional wringer. It is so difficult to ride this cancer roller coaster of hoping for the best, but simultaneously expecting the worst. I just want off this ride. We all want off this ride. What happened to our life?
I read a poem today and thought this paragraph was spot on.
"Let hope be not quenched in the blackness of night, Though the cyclone awhile may have blotted the light, For behind the great darkness the stars ever shine, And the light of God's heavens, His love will make thine, Let no gloom dim your eyes, but uplift them on high to the face of your God and the blue of His sky."
It was a gorgeous day today- sunny, blue sky, warmish, everything in bloom. I sat in my backyard wondering how can this day look so beautiful and our life feel so dark and chaotic? And why can I sit outside while my husband has to sit in a hospital room for 3 weeks? There are no answers. All we can do is lean in, pray for strength and trust that these doctors know what they are talking about. Because right about now I am thinking this stem cell transplant process is for the birds.
Prayer requests
-Nate's ANC gets to .5 soon
-No infections
-That he can come home this week?!
This morning he was put on antibiotics and it takes two days for blood culture results. Once a patient has a fever the doctor automatically has to check for infections and puts the patient on antibiotics. When you do not have an immune system, infections are no bueno. Nate also received platelets and blood today as his numbers were too low. His ANC count today was 0. Apparently 0 is slightly better than "too low to count." We are praying hard that Monday morning shows an actual number for his ANC.
And (one) of the crazy parts of this process is that the doctor is not overly concerned. He assures us that fevers, electrolyte imbalances and bottomed out counts are all normal. He understands this process can move at a snail's pace, but that it's normal and Nate will keep improving. Dear God, please let it be so.
These past couple days have put us thru the emotional wringer. It is so difficult to ride this cancer roller coaster of hoping for the best, but simultaneously expecting the worst. I just want off this ride. We all want off this ride. What happened to our life?
I read a poem today and thought this paragraph was spot on.
"Let hope be not quenched in the blackness of night, Though the cyclone awhile may have blotted the light, For behind the great darkness the stars ever shine, And the light of God's heavens, His love will make thine, Let no gloom dim your eyes, but uplift them on high to the face of your God and the blue of His sky."
It was a gorgeous day today- sunny, blue sky, warmish, everything in bloom. I sat in my backyard wondering how can this day look so beautiful and our life feel so dark and chaotic? And why can I sit outside while my husband has to sit in a hospital room for 3 weeks? There are no answers. All we can do is lean in, pray for strength and trust that these doctors know what they are talking about. Because right about now I am thinking this stem cell transplant process is for the birds.
Prayer requests
-Nate's ANC gets to .5 soon
-No infections
-That he can come home this week?!
Thursday, April 20, 2017
Day +7, Losing my hair again
Time for a check-in from my cell at the Prentice Women's Hospital.
Things have been very stable, which is to say good, over the past several days. The medical staff has successfully gotten the nausea under control and the worst side effects I currently have are fatigue and difficultly digesting food including loss of appetite. My white blood count came back today below their measuring threshold, so I am officially on the re-boot phase. My platelets are also very low (no blood clotting) so I have to be a little careful and will get a transfusion today sometime.
I officially have more hair than anytime since last Thanksgiving. Unfortunately, as I was tugging on my goatee this morning, most of it came off in my hands. Looks like it's back to shaving for a few more months. Luckily I have had plenty of peers pioneer the cool bald look for me already. Unluckily, a beard trimmer isn't great as a head shaver. Hoping Stacy can clean up the mess in the picture above.
Life has been mostly boring, which I am assured is good. I am not yet yelling at the walls, but they are beginning to seem a little stifling. A visit from the pastor yesterday was good to pass the time. Thank you also for all of the cards and letters. They adorn my walls and remind my of the prayer army out there supporting me and my family during this time.
Prayers for successful engraftment of my new stem cells and regrowth in the bone marrow of my immune system.
Things have been very stable, which is to say good, over the past several days. The medical staff has successfully gotten the nausea under control and the worst side effects I currently have are fatigue and difficultly digesting food including loss of appetite. My white blood count came back today below their measuring threshold, so I am officially on the re-boot phase. My platelets are also very low (no blood clotting) so I have to be a little careful and will get a transfusion today sometime.
I officially have more hair than anytime since last Thanksgiving. Unfortunately, as I was tugging on my goatee this morning, most of it came off in my hands. Looks like it's back to shaving for a few more months. Luckily I have had plenty of peers pioneer the cool bald look for me already. Unluckily, a beard trimmer isn't great as a head shaver. Hoping Stacy can clean up the mess in the picture above.
Life has been mostly boring, which I am assured is good. I am not yet yelling at the walls, but they are beginning to seem a little stifling. A visit from the pastor yesterday was good to pass the time. Thank you also for all of the cards and letters. They adorn my walls and remind my of the prayer army out there supporting me and my family during this time.
Prayers for successful engraftment of my new stem cells and regrowth in the bone marrow of my immune system.
Monday, April 17, 2017
Day +4
Happy Easter to all our readers! I've been thinking of the despair that Jesus' followers felt between Good Friday and Easter morning and the renewed hope that Jesus' resurrection gave them. It is good to remember that the trials of this world are temporary, despite how difficult they can be.
The past several days have been full of ups and downs for us. On Saturday all the kids came to visit. It was awesome to see them again after eight days being apart. Conversely, it forced Stacy and I to come face-to-face with the challenges that our family is facing. This is a hard period for all of us and it is difficult to watch how we are all trying to cope with it. Sometimes all a two-yr-old can do is rage against the world. The kids were able to spend Easter with family in Chicago. Special thanks to Aunt Steph and Gpa & Gma J for hauling them all out here.
My recovery seems to be progressing normally. My immune system continues to die off. We then will watch for the rebound which would let us know the transplanted stem cells have re-engrafted into my bone marrow. I have been battling nausea for the past few days and the medical team is trying different approaches to resolve this. While the view is spectacular, it is day 11 in this hospital room (if anyone besides me is counting). I am glad the NBA Playoffs started this weekend to help eat up some of the hours. Thanks also to Dave for the cards and conversation on Sunday.
If anyone from Palisades is following this blog - good luck this week. T-6 days to the outage. I know you all can't wait. I wish there were more I could do!
The past several days have been full of ups and downs for us. On Saturday all the kids came to visit. It was awesome to see them again after eight days being apart. Conversely, it forced Stacy and I to come face-to-face with the challenges that our family is facing. This is a hard period for all of us and it is difficult to watch how we are all trying to cope with it. Sometimes all a two-yr-old can do is rage against the world. The kids were able to spend Easter with family in Chicago. Special thanks to Aunt Steph and Gpa & Gma J for hauling them all out here.
My recovery seems to be progressing normally. My immune system continues to die off. We then will watch for the rebound which would let us know the transplanted stem cells have re-engrafted into my bone marrow. I have been battling nausea for the past few days and the medical team is trying different approaches to resolve this. While the view is spectacular, it is day 11 in this hospital room (if anyone besides me is counting). I am glad the NBA Playoffs started this weekend to help eat up some of the hours. Thanks also to Dave for the cards and conversation on Sunday.
If anyone from Palisades is following this blog - good luck this week. T-6 days to the outage. I know you all can't wait. I wish there were more I could do!
Friday, April 14, 2017
Day +1
It's a great feeling to wake up knowing the drugs are done. I'm sure I will be cycling physically and emotionally over the next couple weeks (months?), BUT...this morning the sun is shining, there are no tubes hooked up to me, and no new drugs to deal with. I am focused on the simple things today. Looking forward to seeing my kids tomorrow.
Micah 6:8 - He has shown you, O mortal, what is good. And what does the LORD required of you? To act justly and to love mercy and to walk humbly with your God.
Micah 6:8 - He has shown you, O mortal, what is good. And what does the LORD required of you? To act justly and to love mercy and to walk humbly with your God.
Thursday, April 13, 2017
Transplant Day
Nate has his stem cell transplant at 1 pm today. The transplant is a non-event compared to the process of getting to this point. It takes between 15 min-1 hr for the cells to be infused. Please pray the stem cells engraft in the bone marrow. Then we wait for his blood counts to rebound- his immune system to return. Please pray for minimal complications during this recovery period. We know that the majority of patients come down with a fever and need blood transfusions at some point. Please pray for manageable nausea and fatigue. And pray that we can find activities to keep us occupied in this hospital room for the next couple weeks.
Here is Nate's hospital address. Please don't send anything too close to April 27.
Here is Nate's hospital address. Please don't send anything too close to April 27.
Tuesday, April 11, 2017
Four Days In
FYI - this is Nate.
The transplant team starts a countdown with the chemo days, so I started on Day -6 and am now on Day -2. That means two more days of chemo, then the re-infusion of stem cells on Day 0. My oldest has been in a pretty serious car accident, although there were no injuries. Stacy took the second oldest to the doctor's office this morning with strep throat. If she's been exposed to strep, that may significantly jeopardize her ability to come stay with me. It's a hard line to walk wishing Stacy could just be with the kids when they need at least one of us and wishing she were here with me. I think that may be both of our biggest struggle right now. We have such great support for the kids, but it's never the same without Mom or Dad there.
On the medical front, things seem to be progressing smoothly. The medical staff here has been great at addressing any side effects from the chemo, so it's mostly just been fatigue and nausea to deal with. I can see Michigan Ave, Water Tower Place, and Lake Michigan from my window. Not quite the same as fresh air, but I'll take it. The loop around the hallway I'm allowed to walk is 1/17 of a mile and I need to wear a plastic gown and gloves to leave my room. Luckily someone invented Netflix.
Thanks for following the blog. Any prayers for my family in MI right now are appreciated.
UPDATE - Stacy was given the green light by the doctors to come see me! She made it to Chicago around noon today and will be here for about a week. Thanks to Stephanie (hero Aunt) for covering on the home-front for most of that time.
The transplant team starts a countdown with the chemo days, so I started on Day -6 and am now on Day -2. That means two more days of chemo, then the re-infusion of stem cells on Day 0. My oldest has been in a pretty serious car accident, although there were no injuries. Stacy took the second oldest to the doctor's office this morning with strep throat. If she's been exposed to strep, that may significantly jeopardize her ability to come stay with me. It's a hard line to walk wishing Stacy could just be with the kids when they need at least one of us and wishing she were here with me. I think that may be both of our biggest struggle right now. We have such great support for the kids, but it's never the same without Mom or Dad there.
On the medical front, things seem to be progressing smoothly. The medical staff here has been great at addressing any side effects from the chemo, so it's mostly just been fatigue and nausea to deal with. I can see Michigan Ave, Water Tower Place, and Lake Michigan from my window. Not quite the same as fresh air, but I'll take it. The loop around the hallway I'm allowed to walk is 1/17 of a mile and I need to wear a plastic gown and gloves to leave my room. Luckily someone invented Netflix.
Thanks for following the blog. Any prayers for my family in MI right now are appreciated.
UPDATE - Stacy was given the green light by the doctors to come see me! She made it to Chicago around noon today and will be here for about a week. Thanks to Stephanie (hero Aunt) for covering on the home-front for most of that time.
Friday, April 7, 2017
Transplant
On Thursday evening, Nate left for Chicago. Nate checked into Northwestern Hospital this morning. He will receive 6 days of intense chemo and on April 13 his stem cells will be re-infused. Then begins recovery time at the hospital until his blood counts are improved enough for him to recover at home.
That paragraph seems so cut and dry, but this whole situation is anything but that. We are often experiencing blessings and pain simultaneously. Our family had a long weekend at Boyne Mountain. We had a relaxing and fun time together. The kids came down with coughs/colds so Northwestern put Nate on antibiotics as a precaution. Thankfully he did not get sick!
And there is pain. My lament and anxiety have been building and tears were unstoppable last night as we said goodbye to Nate. Yes, the reality is that people have stem cell transplants every day. Nate is young and will come thru this fine. It will not be easy, but he will survive. But, we also have the reality that things may not be fine. Nate had to give his advanced directives to Northwestern so they know his wishes. The reality is that if something happens to Nate, I am 2.5 hours away. There is no winning in this situation. We are making the best decisions we can in this situation. I want to be at the hospital with Nate and I want to be with the kids. And if someone tells me, "kids are resilient" I will scream at you. We are well aware that kids are resilient, but the reality is there will be fall out. Behaviors and big emotions are already surfacing, parenting is a struggle right now. Please pray for our kids, Nate and myself. This month could be lonely for all of us in different ways.
I debated whether I should write this update or wait a couple days until my emotions are not so raw. But, this is our reality right now, what is the benefit of sugar coating it? We appreciate your prayers and support.
That paragraph seems so cut and dry, but this whole situation is anything but that. We are often experiencing blessings and pain simultaneously. Our family had a long weekend at Boyne Mountain. We had a relaxing and fun time together. The kids came down with coughs/colds so Northwestern put Nate on antibiotics as a precaution. Thankfully he did not get sick!
And there is pain. My lament and anxiety have been building and tears were unstoppable last night as we said goodbye to Nate. Yes, the reality is that people have stem cell transplants every day. Nate is young and will come thru this fine. It will not be easy, but he will survive. But, we also have the reality that things may not be fine. Nate had to give his advanced directives to Northwestern so they know his wishes. The reality is that if something happens to Nate, I am 2.5 hours away. There is no winning in this situation. We are making the best decisions we can in this situation. I want to be at the hospital with Nate and I want to be with the kids. And if someone tells me, "kids are resilient" I will scream at you. We are well aware that kids are resilient, but the reality is there will be fall out. Behaviors and big emotions are already surfacing, parenting is a struggle right now. Please pray for our kids, Nate and myself. This month could be lonely for all of us in different ways.
I debated whether I should write this update or wait a couple days until my emotions are not so raw. But, this is our reality right now, what is the benefit of sugar coating it? We appreciate your prayers and support.
Wednesday, March 22, 2017
Stem cell collection
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| Nurse Julia |
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| Ouch! |
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| Stem cell collection |
On Friday night, Nate began his nightly shots to boost his stem cell production. Julia is our child who is not grossed out by medical stuff so she cleaned Nate's arm and took pictures for us. This picture makes us laugh. Nate was not really in pain, he was making the face of "crud, my wife is giving me shots." A nurse I am not.
We left for Chicago after supper on Monday. The kids were upset about us leaving for an unknown period of time and therefore I cried after we left. Everything is becoming real- this is the big event. Early Tuesday morning he began the collection process. First they inserted a catheter into his neck, not painful but not pleasant. His blood draw showed that there were about 9 million stem cells in his blood stream. The doctor wanted 10 million collected, so we began praying that Nate could get the collection done in one day. (They had told us the collection could take 1-5 days.) We then sat for about 6 hours while the stem cells were collected. The collection finished at 4:30 pm and then we waited for 1.5 hours for the lab results to show if enough cells were collected. And boom! They had 10 million stem cells! Nate is a stud. And the best news was they took the catheter out right then. Originally we were told the catheter would be removed the following morning. Nate would have been very uncomfortable sleeping with those tubes dangling from his neck. We then packed up our stuff and headed home- much earlier than anticipated.
We have one last appointment with the Northwestern Doctor on the 27th. Nate checks into the hospital on April 7 for the transplant. In the meantime the doctors told Nate to stay healthy (or the transplant will be rescheduled) and enjoy life.
-Please pray that Nate stays healthy!
-We plan on doing a family trip to Boyne Mountain over part of spring break. We hope to get in quality family time before the chaos of April begins. Please pray for a relaxing and fun time together.
Friday, March 17, 2017
Get those counts up.. And useful blog information
Nate has been feeling good and working this week. His hemoglobin is not high enough for the stem cell collection next week, so he is receiving a blood transfusion as I write this. Please pray that this transfusion gets his blood counts high enough so the collection can begin on Tuesday. We also begin giving Nate daily injections to boost his stem cell production. None of the adults in our home like shots, maybe we'll have Julia give them. Ha!
Cancer causes fall out and loss in unexpected ways. This week we closed our foster care license. This was a painful decision. Foster care has been part of our family identity for 10 years. We know that perhaps in the future we can provide foster care again, but for now I'm grieving that loss.
It has also come to my attention that I should give some info about the blog. Most mobile devices only show a reader version of the blog. If you scroll to the end of the blog, you can click on the 'view web version.' Then you will see the whole blog. The meal sign up and help sign up links are on the side of the blog. There is also an email subscription link on the side of the blog, so you will get an email notification when the blog is updated.
Sunday, March 12, 2017
ER..again
On Saturday night, Nate had to go to the ER. He just felt miserable this past week and then he developed bruises and was fatigued. We had a hunch his platelets were low. On Saturday evening we had Julia's 8th Birthday party at Bam- lots of craziness with bowling and laser tag. When we got home Nate noticed small, red blood spots (petechiae) on his hands and feet. He called the on call oncologist who said go to the ER and get a blood draw. Thankfully my parents were in town for Julia's party and could spend the night.
The ER doctor said they rarely see petechiae and asked if he could bring some interns in to see Nate. And they rarely order platelets for anyone, so we joked how "special" Nate is. Nate's platelet count was 6- a new record for him. When he had influenza 6 weeks ago and was admitted to the hospital his platelet count was 9. Anything under 10 and you could start bleeding spontaneously. (Normal platelet counts are 150-400.) The nurse and Nate had a weird sense of humor going. The nurse said he's never seen someone with a platelet count of 6- who was alive. Nate laughed, me- not so much. I don't think we truly understood the seriousness of his platelet count until the nurse put the fear in us- which was hard to hear, but necessary. He explained Nate was extremely fragile, if he bumped his head he could bleed internally and they would not be able to stop it. So the ER ordered platelets for Nate. Platelets are a fragile blood product and not kept on site, they have to drive them in from Lansing. We settled in for the night in the ER. Thankfully platelets were brought in super fast from Muskegon. This is the second time Nate has received platelets. We are thankful for people who donate blood and for the blood bank that coordinates getting blood products out so quickly.
Our oncologist called in and told the ER to give Nate platelets and then discharge him. Nate is neutropenic again, meaning his immune system is very weak. The oncologist did not want him admitted to the hospital where he could be exposed to illnesses there. The doctor said, go home and keep your sick kids away. Mmm, you mean our kids with colds that have been all over him this week? Never mind the masses of people he was with at Bam? Aghh!
Nate was discharged and we arrived home around 3 am. Nate has to take it easy and will see his oncologist on Monday to check his blood levels again.
While this is all happening, Nate and I can joke and do what needs to be done. Today, the emotional fall out and stress hit me. Last night was a reminder of the very fine edge Nate is riding. If Nate had bumped his head during laser tag or something- I can't even go there. How do we live like life is fragile, but also live "normal" family life? I'm not sure there is an answer.
The ER doctor said they rarely see petechiae and asked if he could bring some interns in to see Nate. And they rarely order platelets for anyone, so we joked how "special" Nate is. Nate's platelet count was 6- a new record for him. When he had influenza 6 weeks ago and was admitted to the hospital his platelet count was 9. Anything under 10 and you could start bleeding spontaneously. (Normal platelet counts are 150-400.) The nurse and Nate had a weird sense of humor going. The nurse said he's never seen someone with a platelet count of 6- who was alive. Nate laughed, me- not so much. I don't think we truly understood the seriousness of his platelet count until the nurse put the fear in us- which was hard to hear, but necessary. He explained Nate was extremely fragile, if he bumped his head he could bleed internally and they would not be able to stop it. So the ER ordered platelets for Nate. Platelets are a fragile blood product and not kept on site, they have to drive them in from Lansing. We settled in for the night in the ER. Thankfully platelets were brought in super fast from Muskegon. This is the second time Nate has received platelets. We are thankful for people who donate blood and for the blood bank that coordinates getting blood products out so quickly.
Our oncologist called in and told the ER to give Nate platelets and then discharge him. Nate is neutropenic again, meaning his immune system is very weak. The oncologist did not want him admitted to the hospital where he could be exposed to illnesses there. The doctor said, go home and keep your sick kids away. Mmm, you mean our kids with colds that have been all over him this week? Never mind the masses of people he was with at Bam? Aghh!
Nate was discharged and we arrived home around 3 am. Nate has to take it easy and will see his oncologist on Monday to check his blood levels again.
While this is all happening, Nate and I can joke and do what needs to be done. Today, the emotional fall out and stress hit me. Last night was a reminder of the very fine edge Nate is riding. If Nate had bumped his head during laser tag or something- I can't even go there. How do we live like life is fragile, but also live "normal" family life? I'm not sure there is an answer.
Friday, March 10, 2017
In the meantime
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| Caleb made this. Very appropriate |
Nate had his last chemo round last week! We are hoping he never has to be inpatient at Spectrum Hospital again. The weekend was challenging with symptoms, but Nate is feeling better again.
We went to Northwestern on Tuesday. It was a long day of tests, but relatively easy. We met with a nurse who explained the stem cell collection process. They tell us it could take 2-5 days to collect his stem cells. While there we met a guy who did it in one day. You can guess what Nate's goal is. We also met with the transplant coordinator. She demonstrated how to give Nate the shots he needs before the transplant. We also got a better idea of what to expect while he is inpatient and life after he returns home. I left the meeting thinking, thank you God! I have read and heard about various restrictions post-transplant that had me feeling anxious. The coordinator explained Northwestern's stance of safe, but least restrictive. The main concern for Nate post-transplant is bacteria and infections because of his weak immune system. So for example, he can eat fruits/vegetables as long as they are thoroughly washed. (Except raw tomatoes for a couple months.) Food needs to be cooked well and no deli meats and so forth. (Basically like a pregnancy diet.) She said to avoid salad bars and buffets and only go to restaurants we feel are safe. And in regards to him going out in public, she said just be smart. Don't go to the mall when it's super crowded, but you don't have to sequester yourself either. He can't swim in pools and lakes for a couple months. Again, she did encourage us that most of these restrictions are lifted after a couple months. It was also encouraging to hear her say that Nate could be feeling almost normal about 6 weeks after the transplant. That is best case scenario, but we need some kind of goal. We have been very pleased with all of the staff at Northwestern. We know the next couple of months will be challenging, but we have a goal in mind that hopefully by June, Nate should be feeling back to normal. It would be pretty great to just have a normal, fun summer.
Please continue to pray that Nate stays healthy and nothing will happen to delay the transplant. The stem cell collection will begin on March 21. He will be admitted to the hospital on April 7 to begin the transplant process.
Thursday, February 23, 2017
Stem cell Info
I never know how much information to share on the blog. I recognize not everyone knows what a stem cell transplant is exactly (we sure didn't before this began!). So here is a little information for you.
In mantle cell lymphoma, a stem cell transplant after 6 rounds of chemo is recommended to solidify and extend a person's remission. Technically, Nate is in remission right now as the scans show he is disease free. However, research has found that if patients only do chemo and not a stem cell transplant, the cancer can return within 12-18 months. Patients who have a transplant have a better chance at a longer remission. Obviously nothing is guaranteed, but that is the goal. The doctor is also recommending 2-3 years of maintenance chemo after the transplant, but we are not focusing on that piece yet. One thing at a time.
So what do stem cells do? Hematopoietic (blood forming) stem cells are immature, undifferentiated cells that develop into red blood cells, white blood cells or platelets. The type of cell that is produced depends on what the body needs.
What is a hematopoietic stem cell transplant? A stem cell transplant involves destroying the patient's bone marrow and infusing new stem cells into the blood stream. The stem cells find their way into the cavities of the patient's bones where they take up residence or "engraft" and begin producing normal blood cells. Basically, the cancer is destroyed by chemo and Nate's immune system is re-booted with the stem cells. And how does a bone marrow transplant differ from a stem cell transplant? The only difference between the two terms is how the stem cells are collected. In bone marrow transplantation, the cells are harvested from the hip through a surgical procedure. In stem cell transplantation, the cells are taken from the blood stream through a process called apheresis. (Kind of like when you donate blood.)
Again, I do not know how much information and dates people really want, but if nothing else you can pray for us over the next two months. On March 7, Nate will have a full day of testing and appointments at Northwestern. Insurance requires these tests to make sure there are not any pre-existing conditions before they approve paying for the transplant.
On March 16, we need to start giving Nate shots at home to bump up his stem cell production. I have to admit, this piece is freaking me out. There is a reason I did not go into nursing like my Mom and sister! But, friends who had similar situations have assured me we can do this. We can do this.
On March 20-22ish Nate will be at Northwestern for the stem cell collection. He will be hooked up to an IV of sorts for a couple hours every day until they have enough stem cells. So he could be there 2-5 days, just hard to know.
We have another pre-transplant appointment on March 27.
Nate will be admitted to Northwestern on April 7 and begin the 6 days of intensive chemo. This part has me the most nervous as they are bringing his immune system down to nothing. Then on April 13 they infuse his stem cells back into him. Then we wait for his blood counts to rebound (so he has an immune system again) and get high enough so that he can go home. So sometime after April 27 we are hoping he will come home. Then comes recovery time at home.
Piece of cake, right?! Ahh! As I write this post the Bible verse, "I can do all things through Christ who strengthens me" is running through my head. Not sure I always believe it, but I can rest in knowing God will get us through this.
Short term prayer request, Nate has inpatient chemo in Grand Rapids Feb 28- March 2.
In mantle cell lymphoma, a stem cell transplant after 6 rounds of chemo is recommended to solidify and extend a person's remission. Technically, Nate is in remission right now as the scans show he is disease free. However, research has found that if patients only do chemo and not a stem cell transplant, the cancer can return within 12-18 months. Patients who have a transplant have a better chance at a longer remission. Obviously nothing is guaranteed, but that is the goal. The doctor is also recommending 2-3 years of maintenance chemo after the transplant, but we are not focusing on that piece yet. One thing at a time.
So what do stem cells do? Hematopoietic (blood forming) stem cells are immature, undifferentiated cells that develop into red blood cells, white blood cells or platelets. The type of cell that is produced depends on what the body needs.
What is a hematopoietic stem cell transplant? A stem cell transplant involves destroying the patient's bone marrow and infusing new stem cells into the blood stream. The stem cells find their way into the cavities of the patient's bones where they take up residence or "engraft" and begin producing normal blood cells. Basically, the cancer is destroyed by chemo and Nate's immune system is re-booted with the stem cells. And how does a bone marrow transplant differ from a stem cell transplant? The only difference between the two terms is how the stem cells are collected. In bone marrow transplantation, the cells are harvested from the hip through a surgical procedure. In stem cell transplantation, the cells are taken from the blood stream through a process called apheresis. (Kind of like when you donate blood.)
Again, I do not know how much information and dates people really want, but if nothing else you can pray for us over the next two months. On March 7, Nate will have a full day of testing and appointments at Northwestern. Insurance requires these tests to make sure there are not any pre-existing conditions before they approve paying for the transplant.
On March 16, we need to start giving Nate shots at home to bump up his stem cell production. I have to admit, this piece is freaking me out. There is a reason I did not go into nursing like my Mom and sister! But, friends who had similar situations have assured me we can do this. We can do this.
On March 20-22ish Nate will be at Northwestern for the stem cell collection. He will be hooked up to an IV of sorts for a couple hours every day until they have enough stem cells. So he could be there 2-5 days, just hard to know.
We have another pre-transplant appointment on March 27.
Nate will be admitted to Northwestern on April 7 and begin the 6 days of intensive chemo. This part has me the most nervous as they are bringing his immune system down to nothing. Then on April 13 they infuse his stem cells back into him. Then we wait for his blood counts to rebound (so he has an immune system again) and get high enough so that he can go home. So sometime after April 27 we are hoping he will come home. Then comes recovery time at home.
Piece of cake, right?! Ahh! As I write this post the Bible verse, "I can do all things through Christ who strengthens me" is running through my head. Not sure I always believe it, but I can rest in knowing God will get us through this.
Short term prayer request, Nate has inpatient chemo in Grand Rapids Feb 28- March 2.
Monday, February 20, 2017
Northwestern follow up
We had an appointment at Northwestern on Friday. The Dr looked over the PET scan and bone marrow biopsy and said everything looks great. So Nate will have an auto stem cell transplant. The process will begin mid-March. He will spend 2-3 days at Northwestern having his stem cells collected. Then a couple weeks later he will spend 6 days in the hospital receiving intensive chemo. Then his stem cells will be infused back into him and he will spend about 3 weeks in the hospital. We will be receiving more information from the transplant team over the next few weeks about what to expect post-transplant.
Nate has one more chemo round, inpatient at Grand Rapids on February 28. Please pray for continued health and that we will not be fearful and stressed when the stem cell transplant process begins.
Nate has one more chemo round, inpatient at Grand Rapids on February 28. Please pray for continued health and that we will not be fearful and stressed when the stem cell transplant process begins.
Tuesday, February 7, 2017
Scan Results
We met with the oncologist today and found out the PET scan results are clear! There is no evidence of disease. There has been so much bad news over the past few months that it was shocking to get some good news! Thank you God that the chemo is working.
Nate had a bone marrow biopsy this morning. The doctor asked me if I was going to pass out? That made me laugh. I assured him I was not going to stand over his shoulder and closely observe, but I was not going to pass out either.
We meet with Northwestern on the 17th to go over the PET scan and bone marrow biopsy results. Because the scan is clear, it should be a straight forward decision to do an auto (self) stem cell transplant instead of an allo (donor) stem cell transplant.
Nate had outpatient chemo today. This round is harder to recover from, so please pray for minimal side effects this week.
We know there is still a long road in front of us with the transplant. But, today we are going to smile, relax and enjoy some good news.
Nate had a bone marrow biopsy this morning. The doctor asked me if I was going to pass out? That made me laugh. I assured him I was not going to stand over his shoulder and closely observe, but I was not going to pass out either.
We meet with Northwestern on the 17th to go over the PET scan and bone marrow biopsy results. Because the scan is clear, it should be a straight forward decision to do an auto (self) stem cell transplant instead of an allo (donor) stem cell transplant.
Nate had outpatient chemo today. This round is harder to recover from, so please pray for minimal side effects this week.
We know there is still a long road in front of us with the transplant. But, today we are going to smile, relax and enjoy some good news.
Sunday, February 5, 2017
Isaac's Thoughts
It is challenging for two adults to walk this journey, much less trying to help our kids walk this journey. Sometimes the blunt questions they ask when least expected can take my breath away. We are thankful though when they ask the questions and want to talk because most of the time we have no idea how they are processing all of this.
Isaac's class recently wrote stories. Isaac wrote about cancer. His writing makes us cry and we are so very proud of him for telling his story and sharing it with other people. Isaac said we can share his story on the blog.
Have you ever been so nervous that you thought it was a nightmare?
It was a warm school night and we were all kind of tired and quiet, but the little kids were kind of loud and we were all around the table.
Suddenly Mom and Dad got quiet. Somehow this made the little kids be quiet but me and Caleb were already calm. Then suddenly Dad said, "You know that I've been sick for a while."
Suddenly I got so nervous my hands started shaking. Then Dad said, "Well we've figured out what it is, it's.... cancer."
Suddenly I remembered my Grandma. My hands were shaking more than ever. But before anybody could say something he said, "but if you had to pick a kind you'd pick this one."
Still Julia started crying and we all felt scared.
Finally
Mom said confidently that it's going to be OK. Somehow it echoed in my brain it's ok, it's ok.
But, I wondered what will happen to my Dad?
Isaac's class recently wrote stories. Isaac wrote about cancer. His writing makes us cry and we are so very proud of him for telling his story and sharing it with other people. Isaac said we can share his story on the blog.
Have you ever been so nervous that you thought it was a nightmare?
It was a warm school night and we were all kind of tired and quiet, but the little kids were kind of loud and we were all around the table.
Suddenly Mom and Dad got quiet. Somehow this made the little kids be quiet but me and Caleb were already calm. Then suddenly Dad said, "You know that I've been sick for a while."
Suddenly I got so nervous my hands started shaking. Then Dad said, "Well we've figured out what it is, it's.... cancer."
Suddenly I remembered my Grandma. My hands were shaking more than ever. But before anybody could say something he said, "but if you had to pick a kind you'd pick this one."
Still Julia started crying and we all felt scared.
Finally
Mom said confidently that it's going to be OK. Somehow it echoed in my brain it's ok, it's ok.
But, I wondered what will happen to my Dad?
Tuesday, January 31, 2017
Home
Nate came home Tuesday morning. His counts have improved and he is in the last stages of the flu. Unfortunately, I have the flu now and some of our kids are sick. Please pray for our family's health. Nate's PET scan was rescheduled for Friday and chemo should be on schedule for next Tuesday.
These past few days have been very difficult. Thank you for your prayers and encouragement.
These past few days have been very difficult. Thank you for your prayers and encouragement.
Saturday, January 28, 2017
Setback
Nate experienced his first setback. He spiked a fever Friday night and the chemo rule is, call the doctor when you have a fever. So the doctor told him to go to the ER. A friend came over to stay with the kids and off we went. Nate tested positive for influenza and his blood counts are way too low. The technical term is he is neutropenic. So Nate was admitted to the hospital. He will stay until his blood counts are improved and the fever is gone.
We knew there would be setbacks on this journey, but it is very frustrating for Nate. And the kids feel a little scared that Nate is in the hospital and they can not visit because of his compromised immune system right now. Please pray for a quick recovery.
We knew there would be setbacks on this journey, but it is very frustrating for Nate. And the kids feel a little scared that Nate is in the hospital and they can not visit because of his compromised immune system right now. Please pray for a quick recovery.
Wednesday, January 25, 2017
Northwestern
We had our first appointment at Northwestern today. I knew we were feeling frustrated about this appointment so I was praying that God would surprise us, make this appointment beneficial. And that prayer was answered. We were impressed and pleased with our experience today. The PA and doctor were both friendly, helpful and spent a lot of time with us. The doctor explained the transplant process and the pros and cons of an auto (self) vs allo (donor) stem cell transplant. The doctor was very thorough and answered our questions. And he was hopeful and positive during the whole conversation. He was still honest in that we are essentially dealing in "risk management." Hopefully this treatment will get Nate many years cancer free, but chemotherapy can have long term side effects. As he reminded us though, the hope is to reach that place where maybe we will have to deal with long term side effects, but Nate will not have cancer.
Next week Nate will have a PET scan and a bone marrow biopsy. We will meet with Northwestern on February 9 to discuss the test results and decide on an auto or allo transplant. The decision hinges on whether the scan and biopsy show no evidence of disease or not. We are now experiencing "scan-xiety."
We do appreciate that no matter what the test results show, the doctor seems confident that there will be options. For the next couple of weeks, please pray for no evidence of disease!
-Stacy
Next week Nate will have a PET scan and a bone marrow biopsy. We will meet with Northwestern on February 9 to discuss the test results and decide on an auto or allo transplant. The decision hinges on whether the scan and biopsy show no evidence of disease or not. We are now experiencing "scan-xiety."
We do appreciate that no matter what the test results show, the doctor seems confident that there will be options. For the next couple of weeks, please pray for no evidence of disease!
-Stacy
Saturday, January 21, 2017
Round 4
Nate had his fourth round of chemo this week at the hospital. We arrived earlier on Tuesday in hopes that the quicker he was hooked up, the quicker he could go home. Well, that did not work out so much. We arrived at 9:30 am and chemo began at 3:30. It is frustrating to sit and wait for 6 hours. After we arrive, Nate has to be admitted. Then we have to wait for the blood draw and the lab results to determine if he is healthy enough to have the chemo. Then we have to wait for the doctor to send the chemo orders to the hospital doctor. Then we have to wait for the pharmacy to send the drugs up. So much waiting. Our question is, why can't the doctor send the chemo orders the day before we arrive? So confusing.
Anyway, the chemo went smoothly and no complications. And the hospital staff were great at keeping the chemo on schedule so Nate left the hospital earlier than the last time.
This first week after chemo is a little rough, so pray for minimal side effects.
Nate will have a PET scan in the next couple weeks. The doctor wants to see if the tumors are shrinking- basically determine if this treatment is working. The chemo has gotten rid of Nate's symptoms so we think the treatment is working, but it will be helpful to verify that.
We also learned that there is no way the stem cell transplant will be done in Grand Rapids. Nate spoke with his company and the insurance company, but no can do. So the transplant will be done at Northwestern in Chicago. We have our first appointment on January 25. As Nate says, cancer is mostly a huge hassle. Nate has to meet with a cancer doctor at Northwestern first, who will look over his file and say, "yes, you need a transplant. Let me refer you to our transplant team." And of course, the doctor can't just read Nate's file and talk with him over the phone to make that decision. So we will spend about 6 hours in the car for a 30 minute appointment to tell us something we already know. Fantastic. Now that March is just around the corner, it will be helpful to start learning about the transplant process and what to expect.
This latest news about not being able to have the transplant in Grand Rapids was hard. I knew it was a long shot, but there was still a little hope. The reality is having the transplant in Chicago is going to be hard on our family. Nate will be farther away from friends who can visit. It will be harder for the kids to visit Nate. I will be constantly torn between wanting to be with Nate and wanting to be with the kids. Family and friends will help us thru this time. But it still sucks. And I want people to know, it's ok to sit with us in that anger/sadness/frustration. We know we will get to a place of peace about this and that our family will get through this. But, you don't have to automatically try to "fix it" for us by saying, "well, it must be happening for a reason" or "this path must be better for you." Just listen, share our frustration, pray for us, help us and walk with us. That's all. Well, that actually is a lot! And we are so grateful for all the ways you all have shown us love and support. We know people are always praying for us and that is truly humbling and encouraging. We could not walk this journey without all of you.
-Stacy
Anyway, the chemo went smoothly and no complications. And the hospital staff were great at keeping the chemo on schedule so Nate left the hospital earlier than the last time.
This first week after chemo is a little rough, so pray for minimal side effects.
Nate will have a PET scan in the next couple weeks. The doctor wants to see if the tumors are shrinking- basically determine if this treatment is working. The chemo has gotten rid of Nate's symptoms so we think the treatment is working, but it will be helpful to verify that.
We also learned that there is no way the stem cell transplant will be done in Grand Rapids. Nate spoke with his company and the insurance company, but no can do. So the transplant will be done at Northwestern in Chicago. We have our first appointment on January 25. As Nate says, cancer is mostly a huge hassle. Nate has to meet with a cancer doctor at Northwestern first, who will look over his file and say, "yes, you need a transplant. Let me refer you to our transplant team." And of course, the doctor can't just read Nate's file and talk with him over the phone to make that decision. So we will spend about 6 hours in the car for a 30 minute appointment to tell us something we already know. Fantastic. Now that March is just around the corner, it will be helpful to start learning about the transplant process and what to expect.
This latest news about not being able to have the transplant in Grand Rapids was hard. I knew it was a long shot, but there was still a little hope. The reality is having the transplant in Chicago is going to be hard on our family. Nate will be farther away from friends who can visit. It will be harder for the kids to visit Nate. I will be constantly torn between wanting to be with Nate and wanting to be with the kids. Family and friends will help us thru this time. But it still sucks. And I want people to know, it's ok to sit with us in that anger/sadness/frustration. We know we will get to a place of peace about this and that our family will get through this. But, you don't have to automatically try to "fix it" for us by saying, "well, it must be happening for a reason" or "this path must be better for you." Just listen, share our frustration, pray for us, help us and walk with us. That's all. Well, that actually is a lot! And we are so grateful for all the ways you all have shown us love and support. We know people are always praying for us and that is truly humbling and encouraging. We could not walk this journey without all of you.
-Stacy
Monday, January 9, 2017
Cancer Musings
It appears that the chemo rounds may have a rhythm. As I said in the last post, the latest chemo gave Nate more side effects and he felt off for about a week. Now, he is back to feeling good again. Just in time for the inpatient round on Jan 17-19. We are thankful that only a couple of our kids had a cold over Christmas and that Nate has been spared so far.
Cancer itself has some unexpected side effects. It rocks your idea of future plans. We all 'know' that the future isn't certain, but we still have general ideas of how we think our future will play out. Nate and I have conversations about when he gets a remission. Are we going to continue living as we always have? Are we going to take the family trips sooner that we always said we would do 'someday?' Just many questions along those lines.
I also have realized that cancer is not a magic pill. Since we are in the midst of so much turmoil, I thought Nate and I would suddenly get along all the time. I mean, we should get that at least right?! We would always have the big picture in mind and our issues would seem insignificant. But, no. The issues that have always been there are, guess what? Still there. Buh. I am sure though that our relationship is growing and changing. That just takes time, like everything else in life.
And we had planned on attending Gilda's club last week but, plans changed. Gilda's club let us know that in the kids group they would be honoring a father who recently died from cancer. I am thankful Gilda's club gave us a heads up. We decided to not attend. We do not know this family and we did not want our kids first group experience to be about death from cancer. Right now we need to help them understand life with Dad having cancer. And for various scheduling reasons we will not be able to attend Gilda's club til later in the month.
Nate is working all the angles to see if his transplant can be done in Grand Rapids. It is not looking promising, but he is trying. It would be a HUGE relief to have the transplant done in Grand Rapids. Please pray!
-Stacy
Cancer itself has some unexpected side effects. It rocks your idea of future plans. We all 'know' that the future isn't certain, but we still have general ideas of how we think our future will play out. Nate and I have conversations about when he gets a remission. Are we going to continue living as we always have? Are we going to take the family trips sooner that we always said we would do 'someday?' Just many questions along those lines.
I also have realized that cancer is not a magic pill. Since we are in the midst of so much turmoil, I thought Nate and I would suddenly get along all the time. I mean, we should get that at least right?! We would always have the big picture in mind and our issues would seem insignificant. But, no. The issues that have always been there are, guess what? Still there. Buh. I am sure though that our relationship is growing and changing. That just takes time, like everything else in life.
And we had planned on attending Gilda's club last week but, plans changed. Gilda's club let us know that in the kids group they would be honoring a father who recently died from cancer. I am thankful Gilda's club gave us a heads up. We decided to not attend. We do not know this family and we did not want our kids first group experience to be about death from cancer. Right now we need to help them understand life with Dad having cancer. And for various scheduling reasons we will not be able to attend Gilda's club til later in the month.
Nate is working all the angles to see if his transplant can be done in Grand Rapids. It is not looking promising, but he is trying. It would be a HUGE relief to have the transplant done in Grand Rapids. Please pray!
-Stacy
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