It has been quite a journey thus far, but I'm already starting to forget about how hard August through October really was.  We have come so far already and there are days now where I'll open my eyes and it won't be the first thing I think of. 

To follow up on some information from my last post, Kev did not end up going to Beth Isreal in Boston due to last minute insurance coverage issues.  It appears that this option is off the table at this point since the experimental cancer vaccine would've needed a specific number of cancer cells.  Which brings me to the next part of my update which is:  KEV IS HAVING A REMARKABLE RESPONSE TO CHEMOTHERAPY!  So, even though he no longer qualifies for the vaccine trial in Boston (he doesn't have enough cancer cells!), we are so thankful that Kev has earned an "A" in chemo response.  If you see Kev, give him a high five and tell him he is a rockstar. 

The new treatment plan is as follows:  An additional 2 rounds of chemo.  This will bring his total to 6 rounds.  He started round 5 today.  Four is the typical number, but research shows the more chemo you can tolerate, the better!  Kev will have his first autologous stem cell transplant in March and his second, most likely, in the fall. 

There was very good news today following his routine blood draw.  For the first time in almost 2 years, Kev's white blood cell count was in the normal range without the assistance of medicine.  This means his bone marrow is beginning to do its job normally again.  Praise God.

Perspective is a funny thing, and devastation has many faces.  The events of Friday's tragedy undoubtedly gave many of you perspective, as tragedy has a way of wiping away the things that we once felt were so important.  But let me tell you, what our family is enduring seems "easy" compared to what those victim's families are having to suffer, and will have to suffer, for the rest of their lives.  Jesus, only you can give the peace that surpasses our understanding.  This tragedy isn't too big for You.  Holy spirit catch the tears and fill those suffering with your presence. 
Thank you, God, for this amazing healing you're doing in Kevin's body.  We give you all the praise for each and every cancer cell that is killed.  Thank you for the wisdom of the doctors and medical staff.  Thank you for the means we have for which to pay these medical bills.  Thank you for the birth of Jesus.  Amen.

Merry Christmas everyone!  You are all in our hearts and minds, may peace be with you.

Kristin

I apologize for the long wait in between updates.  I had been hoping that by waiting, I would be able to provide everyone with a final and comprensive plan of action.  But (sigh), I am learning that each doctor appt. raises as many questions as it answers, and that no one is going to pave a clear cut road for us to follow. 

I have been looking in to clinical trials since our diagnosis, and a friend sent me information on a trial being done through Harvard University involving a vaccine (I'll spare you the latest research on vaccines--but to summarize, a cancer vaccine helps to fight cancer that is already in the body--theoretically).   This interested us because it involved the same treatment course he's now getting, including autologous transplant, which I discussed during my last update.  Unfortunately, this would mean that Kev would have to have the transplant done in Boston, as well as make weekly trips following the transplant for the vaccination regimen.   Without getting too technical, this may or may not be the best course of action--no one can tell us for certain that this will actually help Kev. And it has a slight possibility of setting him back by not allowing him the normal post transplant maintenance drug for a few months while he's still enrolled in the trial.  We are seriously considering this as a possible treatment course, and Kev is meeting with the Harvard docs this coming Tuesday.  Please pray for wisdom for Kev, myself, and the family to make a good decision. 

We do know that we have to get aggressive with this, and we have to do it fast.  If he stays here for treatment (i.e. does not enroll in the clinical trial), he is going to complete another 3 or 4 rounds of chemo prior to transplant, and he may actually have a SECOND transplant a few months following the first.  With Kev being so young and otherwise healthy, some research shows that a "tandem" transplant often extends remission even further.  But again, we don't know what course to take at this point, and we are planning to continue discussion with our doctors, as well as the Harvard docs. 

We went to Chicago Thursday to meet with a MM specialist there.  This doc will also review the Harvard trial and give us his opinion.  We're hoping to hear back from him next week. 

But on to some stuff that we DO know!  Kev is doing awesome.  He has his strength back--he's picking up the girls, pulling back his bow, and getting underneath his truck again :-)  What an amazing answer to prayer.  His pain level has diminished quite significantly, and he's having a great response to the chemo, which is a very good prognostic sign.  Kev is tough as nails, and he's treating this chemo like it's no more of an inconvenience than the common flu--what a rockstar. 

This is very daunting, exhausting, and highly emotional stuff to work through--I have my days where I'm feeling great, but there are other days when the fetal position seems like the only place to be, and the strength provided to move forward can only be attributed to God, my father. 

Please continue to pray for us as we navigate this dreadful journey.  To borrow from a recent sermon I heard, God doesn't promise that he'll always show us the road to take.  What he does promise is that he'll be right there with us, every step of the way (Matt 28:20).  But we have to keep moving, we have to keep seeking the direction, praying for God's wisdom and for God's will to be done. 

Thanks for everyone's continued prayers, texts, emails, cards, gifts, phone calls, Facebook postings, I could go on an on.  You are all AMAZING.  What a blessing you all are to my family. 

Love,
Kristin

Kevin is almost completely through his second round of chemotherapy.  He and I agree that this round has seemingly gone by more quickly than round one, mostly because we know what to expect now.  We see patterns with his symptoms, blood counts, pain level, and mood based on what day of the regimen it is.  So although the symptoms are still not fun, they are "easier" to tolerate when we know what is causing them and when they'll resolve. 

The most current and aggressive form of treatment for multiple myeloma at this point is combining chemotherapy (Revlimid, Dexmethosone, and Velcade) with what is called an autologous stem cell transplant.  Autologous means that they use your own stem cells (a blessing that we don't need to do a donor search!).  The stem cells are harvested intravenously and done on an outpatient basis.  In order for the stem cells to "take," one needs to start with what I would like to term "a clean slate."  This puts a nice label on what is a nasty procedure:  a very intense form of chemotherapy that essentially kills off your bone marrow.  When the cancer free stem cells are returned to the body, ideally they will multiply in a myeloma free environment.  Unfortunately, this means a 3-4 week hospital stay.  Reserach shows that doing an autologous stem cell transplant extends remission by about 5 to 10 years--that is, if the transplant is deemed successful.  This transplant is tentatively slated for the end of December or beginning of January.  Please pray specifically for a successful transplant.

We are very sad about the news of the extended hospital stay, not to mention scared about this intense chemotherapy.  Thus far he has been able to avoid losing his hair, but this form of chemo will make him very ill and he will lose his hair.  We have made a family decision that we don't want our young girls to see their daddy under these circumstances, so this separation will be an additional strain.  Please pray for our girls.   

Sometimes everything seems so real that it's crushing, and other days we can hardly believe that all of this is true.  I will be honest and admit that sometimes I cry and rage at God.  This all seems so senseless!  Why Kevin?  Why us?  Why our children?  Aren't we good people, God?  But I am reminded that being a follower of Christ doesn't exclude you from suffering.  If that was the case, everyone would want to jump on board and the expression of love that we recieve would be so diminished that it wouldn't be love at all--just a no-brainer deal of a lifetime.  I didn't sign up for that.  The love I recieve is so great that it cannot even be taken from me when devastation rocks my life.  Thank you God, thank you for loving me. 

And thank you all for all of your continued prayers, help, thoughts, kindness, empathy, notes, flowers, cards, and hugs.  I always mention how humbled I am and it continues to be true. 

Love to you all,

Kristin

Thank you for all the continued prayers, thoughts, and kind words.  Although we wish the pain relief were more complete, we are very appreciative and grateful that these last two weeks have brought an overall decrease in his level of pain. 

He completed the last day of radiation on his thoracic spine last Friday.  We have learned that myeloma cells are very sensitive to radiation and die easily when subjected to just a low level.  Speaking strictly in terms of his thoracic spine, this has greatly helped in relieving his pain.  Since he did get such localized pain relief from the radiation, we have decided that it would be in his best interest to start some radiation on his lumbar spine (a relatively new area of pain), starting early next week.

He will wrap up round one of chemo on October 4th.  He starts round two on October 11, round 3 on Nov. 1st, and round four on Nov. 22nd.  If all goes as planned and the cancer cells have been sufficiently killed off, he will recieve a stem cell transplant in December.

Many of you are asking me how Kev has been feeling since the chemo.  In general, he is faring quite well, and has had very few days that he hasn't been able to function normally (as normal as his pain levels will allow).  He won't lose his hair and only has to visit the doctors office one time a week, the rest of the chemo being in the form of pills from the pharmacy. 

The other common question we're getting is when we'll know how the cancer is responding to the chemo.  Without getting too technical, MM has varying levels of response to chemotherapy.  There is a level called "complete response" wherein following the chemo treatments the MM is not even detected in the body.  The other levels of response are in decreasing degrees respective to the amount of monoclonal protein detected on blood serum screens.  Obviously, we are praying for a complete response.  We most likely will not know this information until he has completed at least 2 rounds of chemo. 

Some good news is that his blood counts continue to come back positive every week since our discharge from the hospital.  He, at this time, is not at increased risk for infection (and that is a blessing in our house since our kids are human petri dishes). 

Emotionally, we are on the "cancer roller coaster" and have our good days and bad days.  I go from feeling hopeful to angry to tearful in the span of a few hours and it truly is exhausting. 

We have the best family in the world and this has done nothing but bring us all closer together.  Right now the family is really rallying together and meeting everyone's needs (special thanks to our parents--you guys are absolutely amazing), and we are so very thankful and grateful for the continual offers of help from EVERYONE.  Thank you.

I continue to be humbled by the vast amount of readers to this blog.  As of today, it has had close to 3,000 pageviews. 

Lord, I pray that you will use me and this awful experience for your good.  Let our family and others feel the peace that comes from you--the only true peace.  Please provide wisdom to Kevin, myself, his other caregivers, and doctors so that these cells will continue to be killed and never return.  In Jesus' name, Amen. 

We are so thankful that the hospital stay of last week is over and done with, and that he was discharged earlier than they initially anticipated--thank God. 

This last week has been extremely challenging for Kevin physically.  As myeloma progresses, it begins to divide and multiply within the plasma cells inside the bones.  The large bones, like the femur and pelvis, begin to experience significant pain since these are bones that produce a lot of marrow.  It seems like every day is a new level of pain or area of pain.  There is local pain, referred pain, pain when he moves, pain when he sits still, pain when he sleeps.  I know that Kev would balk at me typing this, since it invites some pity and this is certainly not what we want you to do--especially since pity isn't going to change a thing.  People have been asking me what specifically we need prayer for and it is this:  mercy from this physical pain.  Please pray.  This is very difficult on Kevin obviously, but it's hard to know what to tell Brianna since there is no longer any kind of front that can shield her from seeing this. 

Kevin is--hands down--the toughest person I know.  He is still going to work every day and doing as much as his body will allow at home and with the girls.  I love him, he is a gladiator-no doubt. 

We are being told that once the chemo starts and the myeloma cells are being removed from his bones, his pain level will improve significantly.  The chemo starts this Friday and it cannot come soon enough.  Although we are dreading chemo and the side effects, we have all of our hope in that it will improve his pain. 

God, why do you allow this suffering?  I do not know.  I don't have any awe inspiring "fix-it" bible verses to write down or to quote.  The distress I feel is as real as anything I have ever experienced.  And yet in the really bad moments--although the pain is still there--I sometimes feel a comfort that I can't explain.  Not always.  Sometimes.  But it always seems like just enough. 

Grace and Peace. 

Kristin

After our appt. last Friday, life resumed as "our new version of normal" over the weekend. On Tuesday, Kev left for Harbor Springs on business. Later that day he received a phone call from the doctor that his most recent labs showed an increase in his calcium levels and a slight decrease in renal functioning. He was advised to immediately return home and be admitted to St. Mary's. The doctor informed us it was "urgent but not emergent." By 7pm we were in the hospital.

 At the time I'm writing this update, we're still at St. Mary's. The following are goals prior to discharge:
1. Get blood calcium levels down with biphosphonate.
2. Stay hydrated. 
3. Blood transfusion for low hemoglobin. 
4. Allpurenol (sp?) to decrease uric acid and improve renal function. 
5. Possibly begin chemotherapy. 

 We are hoping to discharge by the weekend, but so much varies on his response to the medications. So far, we are holding up okay, but we can't help but ask God to please show us some mercy. We're tired, Kev misses the girls, and we're frustrated that things aren't happening more quickly. I'm learning that one specific thing- be it a lab, culture, order, whatever-can take hours to actually happen. Being away from home, lacking activity, normal food, comfortable bed, etc, is extremely emotionally taxing. 

 I am certain that God loves us and is allowing this trial for good. What good? we do not know, and this is okay. God is God, and I am not. 
 When Jesus took the boat trip with some of his disciples, he fell asleep. I've often wondered about the significance of this. Why would Jesus fall asleep, knowing they were about to encounter a storm? Why not just make it the smoothest trip possible, get a good nap, and everyone arrive safely on the other side none the wiser? If he would've done that those men wouldn't have seen one man quiet a raging storm in an instant! Jesus allowed their faith to be tested and not only revealed their lack of trust in who He was, but also demonstrated one of the most amazing miracles in the gospels. I have to believe that trials reveal things that we normally would never know about God and about our spiritual strength. 
 There were 798 page views to this blog.....I am humbled beyond measure. Without this cancer, I would have never known our support system was this vast. I don't know about you, but I'm glad Jesus sent out their boat in a storm. 
 God bless, Kristin 
 Ps). Spelling errors and poor grammar should be blamed on the fact that I'm typing this up on a smartphone, and its a PITA.

Over a year ago, Kevin had a blood draw for symptoms related to his acid reflux condition. This blood draw showed that his white blood cell level was low and he recommended another check in a few months time. We did this for about 9 months, before he was finally referred to a hematologist since his levels weren’t rising. The hematologist ran his blood through a few tests and was able to rule out some conditions including Leukemia and rheumatoid arthritis. He found that Kevin had a slight deficiency in his copper levels, and told him to take copper for 3 months and return for another draw. At this time, the doctor seemed unconcerned. I specifically asked the doctor about the possibility of cancer, and he assured me that it didn’t look like it. We were so relieved!

We went about our summer as normal, with Kev travelling a lot for his work (boat captain) and me home, working part time. Not much time was spent thinking about his blood levels (not for me anyway—Kev may tell you differently), and another busy summer was coming to a close.

In early August, Kev hurt his back badly while jumping off a boat on to a dock. He was taken in for X-rays, which showed a slight fracture in his T10 vertebra. He was sent for an MRI and it revealed that he actually had an old fracture in T10 that had healed over, and had a new fracture in T7. Kev was in incredible pain for almost 4 weeks while we were trying to figure all of this out. He was so debilitated, that he couldn’t even pick up and carry our two young daughters.

Finally, the day was here where we would make our 3-month visit back to the hematologist for a consult regarding his anemia. Feeling optimistic that cancer was off the table, we packed up the whole family for the trip. Unfortunately, this visit was not what we were expecting. When the doctor found out about Kevin’s fractured spine, he was very concerned. He had performed an additional test when he had seen that Kev’s anemia had not improved with the copper, and this test had shown a monoclonal protein spike. These three factors: anemia, monoclonal spike, and vertebral fractures, were enough of a concern that he informed us there was a 90% chance that Kev had cancer.  We were so taken off guard, that we didn’t know what to ask for follow up questions. I did ask what he thought it was, and he said "some type of lymphoma or multiple myeloma."

As the following week unfolded, Kev had a bone marrow biopsy. He also had a procedure done at Javery Pain Institute called a vertebra-plasty (sp?), which helped relieve some of his incredible back pain.

On Friday, September 7^th, Kevin was diagnosed with multiple myeloma. It is in stage 3, due to the bone lesions/fractures. Blood cancers are staged differently than "solid" cancers (e.g. tumors), and the treatment is no different from stage 2 to stage 3. The treatment plan is for Kev to start chemo next week, and he will also have a stem cell transplant/bone marrow transplant in the near future. If you would like to research this disease, I highly recommend going straight to the International Myeloma Foundation: http://myeloma.org/Main.action.

I have named this blog, "Taking Christ’s Yoke" because I love what Jesus told us in Matthew 11:29, Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.

I know three things to be true:
1.  God is Love.This means that God doesn’t "punish" us. Everything God allows to happen, he allows because he knows that these trials will fulfill plans that he has—not just for Kev and our family—but for maybe for others as well. Although we don’t know what God’s plans are for this, we do know that we have to come to Him for guidance, nurturing, love, and mercy. After all, God IS love, and has only goodness in mind when allowing trials.
2.  God loves my children. I have had a particularly hard time with this one. Although I can recite it and say, "God loves my children," this was different than saying, "I trust God with my children." And altogether different than saying, "I give up my children to God." Me, myself, and I know what’s best for my children and it’s not taking their father away!  And that’s that God!!. I heard His gentle voice telling me, "Kristin, I am their father first, and I know what I’m doing." Yes, God, I will trust and obey.
3.  God hears and answers our prayers. I know this one from personal experience. I cannot describe to anyone what it feels like to encounter the loving touch of God through His Holy Spirit, but I can tell you this—It is real, it is merciful, and it humbles you to your knees. Others who have had a real encounter with God know what I’m talking about. He hears my groans, He sees my tears, and He loves His sons and daughters.
　
Thank you all so much for your continued prayers, phone calls, text message, voicemails, conversations, hot meals, frozen meals, babysitting, etc! We love you all.