At seeing this entry you will most likely be thinking that the stem cell transplant has been completed, since that was my plan following my last update. But what am I learning about plans?! They are unreliable and almost always change. What a lesson in coping with change this has been for me.
I haven’t previously shared this, but around the same time we heard the good news of the marrow biopsy, we were also dealing with an "incidental" ailment: A fast growing cyst on Kevin’s leg. Initially, the doc wasn’t sure what it was, thinking possibly it could be a benign sebaceous cyst since he is immune-suppressed during chemo. It quickly became apparent, however, that it was most likely not benign, as it was growing fast. Kev had it removed and simultaneously biopsied. The results showed that it was myeloma. At first we were somewhat okay with the news, since this may explain why he still had "cancer protein" in his blood but tested with clean bone marrow.

A couple weeks went by, however, and more and more of these cysts began to appear on Kev’s arm and back. The doc began to become more concerned, and thought it best to consult with our other team member, specialist Dr. J, in Chicago. We found out these cysts are called plasmacytomas and they typically don’t appear until after someone has had a remission and the disease is in relapse. The docs all agreed that this was very unusual, which is something you DON’T want to hear when it comes to cancer.
Ideas were being tossed about, drugs were being contemplated that we’d never even heard of at this point, and our complete response "high" was quickly doused with the reality that this cancer wasn’t going to go down easy.

We consulted with the transplant doc, our oncologist, and Dr. J, and it was decided that the best course of action would be to give Kevin an alternate form of chemo than what is standard prior to a transplant. It is called DVT-PACE (each letter represents a separate drug. He was on RVD before—3 drugs. Now it’s 7). This chemo isn’t messing around—it involves hair loss, severe nausea, and all the other lovely side effects of killing cancer. It also involves a weeklong hospital stay.
The transplant doc continues to be confident that complete response following the transplant is STILL very feasible for Kev. I’m scared and confused about these new symptoms, but I’m also thankful that the doctors are responding accordingly and wisely.

He will receive 2 rounds of DVT-PACE, and he is currently receiving round one. Each cycle is 28 days, so this now bumps his transplant process to the end of March/ beginning of April. I am very ready to get this transplant show on the road, and these scary cysts and delay in transplant is frustrating and very disappointing to us.  It is very easy to feel like you're in the ocean at the mercy of huge waves; tossed up….down…..choking…..breathing—but I choose to not live this way. My foundation is firm and my anchor has been securely fastened. Although everything is crashing around me, I hold fast.

I was talking with someone today and they mentioned to me that they were feeling angry about what our family was going through. I want to please implore all of you to not be angry about this trial that our family, specifically Kevin, is going through. Although I have my angry moments and days, in all honesty, I am not angry about this. God has chosen to allow this for Kevin and our family and God LOVES our family. Everything God does is love and a manifestation of his love. I place this knowledge like an easy yoke upon me and it gives me a peace that is truly supernatural. Although I plead and pray and make sure God knows my preference for how all of this should turn out, I find rest in the basic tenets that Jesus offers to all of us.

"If anyone comes thirsty to me, and they keep coming to me to drink, out of their soul water will flow."
--Jesus

Love to you all,
Kristin

A story:

We anxiously awaited the doctor’s arrival to his office on Monday afternoon, trying to talk about anything except how nervous we felt (nervous doesn’t feel like the right word). I feel it’s helpful to the story to provide some of our perceptions of Kev’s oncologist: He tends to be on the "realist" side, which we appreciate, but occasionally hearing an optimistic word or two never really hurt anyone. He entered the office, shook our hands, and proceeded to tell us the results of Kev’s bone scan. We already knew that his bones had suffered damage as the disease went undiagnosed for some time. Hearing that his bones still looked bad immediately placed "that feeling" in our guts. I began probing the doctor for clarification and began to understand that his bones actually aren’t any worse than they were 5 months ago. Also, his bone strengthener medication can take years to rebuild damage. Okay, not so bad.

Next news: His "cancer protein" level is going back up. Slightly, but it’s not going down anymore. We need to move to transplant within the next 2 or 3 weeks. Kev and I nodded our heads numbly—okay, whatever it takes doc. The dreaded news: partial response.

Sigh. Okay, let’s get this next test over with: Biopsy (AKA, bone drilling by hand). Better get 3 probes just to make sure we get enough marrow. Prize fighter Kev took it like a champ. Nothing like getting your bones probed following some not so sunny news.

Me (following biopsy): Doc, we tend to only hear the negative at these appointments.
Doc: You actually have quite a few good markers Kevin. All of this just means stage one is done, and stage two needs to begin.
Me: When will we get the bone marrow results?
Doc: Tomorrow night. I’ll call you around 7pm.
Me: But he’s at a partial response?
Doc: Yes. Only 25-30% of patients achieve a complete response. It’s okay, we still have transplant. I expect good news from the biopsy. Let’s hope for less than 20% cancer cells.

The next night….. no phone call.

Today came. Feeling realistic about the results, knowing what we know about his protein level, we certainly were not expecting the news we received today. NO CANCER CELLS WERE FOUND. Praise the Lord God.

Kev: But what about my protein levels? This doesn’t make sense.
Doc: Myeloma will often hide, but this is very good news. Your bone marrow is functioning with normal cells again. Your urine is showing no protein output and there is a normal cellular balance in your marrow. The transplant should knock that protein level right down to zero.

This is still partial response, but it’s darn near complete!

We will be moving forward with transplant soon. I mostly likely will not blog again until after his transplant, since this begins a very busy time.

Thank you to all who think of us, and all who pray for our family. This is great news, but let us praise God also on the bad days. He takes us through the valleys so we can fully appreciate what it looks like on top of the mountain.

God Bless,
Kristin
　

Kevin is just finishing up his 6th (and hopefully last) round of chemotherapy.  He continues to tolerate the cycles very well, and I often find myself thinking that if the tables were turned and it were me going through treatments, our lives would be much more drastically altered.  I know for a fact that I would not be as strong, and I surely would do a lot more complaining.  He is such a strong guy and we are all so proud of him. 

These next couple of weeks will bring a lot more information into the game plan going forward.  Next week he begins testing to be "re-staged."  When we were diagnosed, he was at Stage 3.  After 6 treatments, he gets a new stage.  Here is where all of you come in:  Please pray pray pray that this cancer has been knocked out almost completely.   In my last update I outlined what his blood levels are showing--all good news.  His protein level, what I call "the cancer level," has gone from a 6.2 to a 1!  Amazing.  But as his doctor said, "the proof is in the pudding."  What is the pudding?  Bone marrow.  We are praying that his bone marrow comes out clean--with an undetectable amount of myeloma cells.  This does happen in a small percentage of cases (you may recall my post about the varying levels of response, "partial", "complete", "stringent complete").  Since the research shows that the level of response is directly related to the length of remission, we are so hopeful for a good response ("stringent complete" being the best). 

HOWEVER, this is just round one of the game.  There are 2 to go--the stem cell transplants.  Many people go into the transplant procedure without a complete response from chemo, and end up there following the transplant.  So all is not lost if he has only partially responded to the chemo, we still have more weapons in our arsenal.  But please pray--going into the transplant with no cancer would double down his chances of a long remission.  There is no such thing as overkill (pardon my drama). 

I will post soon after we find out the results of the re-stage (I promise, Ken :-).  There is also a possibility that, depending on the results, the doctor will recommend 2 more rounds of chemo prior to the transplant, especially since he is tolerating the chemo quite well. 

It is truly amazing that God calls each of us by name, and doesn't count us by numbers.  He calls His children to be His instruments, and for reasons that we may never know, God has called Kev and our family to a plan that He sees as fully good.  He is fully in control and He is fully good.  If He would've first asked my permission for this, I would've said, "God, okay, I trust you but I'm just not ready.  I'm not mature enough in my faith yet.  Let me grow, let me read the bible cover to cover first.  Let me learn how to be a better witness first.  Let me learn first what Jesus would do"  But I am reminded yet again that God uses us just where we are and just how we are.  I wasn't and am still not ready for this.  I can only keep praying that God equips me with the strength to continue to glorify Him and the strength to keep going--whatever His will may be. 

Thank you everyone.  God Bless!

Kristin

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.