Yesterday, as my girls and I were playing outside, I noticed that a hummingbird had flown into our garage.  He was banging and banging that fragile little beak against the glass, obviously not understanding why he could see freedom, but not get there.  Poor, pathetic creature, I thought, and grabbed our pool skimmer from the rack.  I reached up with the long skimmer, attempting to shepard the bird in the opposite direction--towards real freedom, but he began to panic more and increased his velocity against the window.  I started to talk to him, "calm down, birdie, you're going to kill yourself doing that.  Turn around, come on, turn around."

 "Mom," said Bri, my 5 year old, "why isn't he doing what you want?"

"Because he's scared of me, honey," I said.

"Why?  You're trying to help him, " Bri stated the obvious.  

"Yes, but he doesn't trust me.  He thinks I'll hurt him."  I answered.  The minutes ticked by and my frustration increased.  "Bird, you've got another 30 seconds before I give up on you," I told him (Claire had just begun to throw water balloons at my car--duty was calling).  

It was as if he heard me.  Exhausted, he landed on the pool skimmer and I turned just enough to allow him another perspective and he flew towards it, to freedom.   

This bird, and the conversation with Brianna, stirred something within me on the soul level.  How much am I like this bird sometimes?  Stuck on one perspective, my mind not able to comprehend why things are so scary and hopeless.  What if this thing reaching out to me hurts me?  I think what I'm doing on my own is going to work....but I'm just getting so tired.  Eventually, I'll get exhausted, then resign myself to landing on what is reaching out to me.  And when I do, I find that instead of hurting me, it has set me free.  And like the bird who cannot understand the human mind, neither can I understand the mind of my God, who wants to help me, but can only do so if I allow it.

Fear and trust, trust and fear.  What's that song?  "Around and around and around and around we go.  Tell me now, tell me now, tell me now, tell me now you know"  (to you old fogies, that's Rihanna).  So here I go again, on this dance with fear.
We found fresh plasmacytomas on Kev's body late last week.  Fresh, meaning new since the transplant.  This news is not scary in and of itself.  We new that he needed the donor transplant and a whole new immune system, and we knew we shouldn't wait very long after the transplant (after all, it was 21 days after his first transplant that we found it in his brain).  What's scary for me is how aggressive and fast this moves.  Only day +29 since he had a procedure that is designed to buy people years of life.   Kev received Matt's cells on Friday, and while we wait for Matt's cells to engraft, we're also now allowing this cancer to continue mobility inside his body.  
The PET scans were repeated and the results were mixed.  ALL the plasmacytomas from before BEAM/transplant #2 were gone.  The brain is completely clear (hallelujah!), and his bones look good (no cancer activity within the bones right now).  But there are these new plasmacytomas (numerous ones) indicating that the cancer is on the move--and it moves fast.  Because of this, the docs aren't going to keep him immuo-suppressed as long as they would the typical patient.  As soon as they see engraftment, they're going to pull back on he immuno-suppression drugs to get that Graft vs. cancer effect going ASAP.  
Of course, along with this comes Graft vs. Host (GVHD) symptoms.  We don't know what these will look like yet because we're waiting for engraftment, but statistically Kev has a 33% chance of getting acute GVHD symptoms, which are most typically skin rashes, intestinal problems, and liver issues.  

In general, Kev is feeling okay right now.  He has some negative side effects from the Total Body Irradiation and chemo from last week, mostly nausea and fatigue, but he has medicines that help and he is laying low.  Bri is starting kindergarten next Wednesday and we're nervous and excited that this time is here.  The doc okayed Kev attending the kindergarten orientation tomorrow night, so we will be meeting her new teacher and seeing her classroom.  Time moves on with or without fear, I suppose.  

Pray that Kev and I will keep reaching for His help with blind faith that will place us on a path to freedom, even when we cannot see.  

God bless.  Keep the prayers coming (for my non-praying friends, keep that positivity coming!), and keep the faith.

Love, Kristin



                                                    Nurse Jackie.  We love her.

Crowded room!  Transplant doc, Dr.Williams, bottom left. 

 Getting Matt's cells.

When Kevin was diagnosed with cancer one year ago and I made the decision to start blogging, I made myself a vow that I was going to remain honest about my feelings.  Tonight, I honestly don't feel like updating this blog.  I have been putting it off because I've been waiting for a day where I feel like I won't come across as negative or scared--a "good day."  But perhaps there is someone out there reading this who will feel affirmed by my honest admission that today isn't the greatest of days and things have been hard these last two weeks.  I have been struggling with feelings of frustration towards the doctors and medical staff, feelings of resentment towards people with "normal lives," and feeling irritated when I get pitiful looks from people who learn about our situation.  I feel sharp stabs of anger when what should be happy moments (Bri learning to swim or Claire using the potty) are rained on by the black cloud over our lives.  I feel whispers of guilt that my children are not getting all of me because the majority of my brain cells are devoted to cancer.  I feel so restless sometimes, like my skin doesn't fit and I wish I could wiggle out of it.  I want to be what my family needs all the time as a wife and as a mother, but who can be all things at all times?  This 2 week break has been great, but the looming third transplant awaits and is thus providing good soil for all of my negative fruit. 

Kevin is day 25 post transplant.  He began the conditioning chemo for the allo (donor) transplant this afternoon and will have this for three days (outpatient).  The chemo is called Fludaribine and is a mild agent compared to what he's endured already.  On Friday morning he will receive Total Body Irradiation (TBI or "flash" radiation) which is a low dose, one time treatment in order to condition his immune system to prepare for the donor cells.  He will receive Matt's stem cells on Friday afternoon.  We will see his blood counts drop from the chemo, but after about two weeks we should see Matt's cell engrafting.  There will be some graft versus host symptoms (GVHD) so please pray that these will be mild. 

We will be going to the clinic every day and if there are any major adverse GVHD symptoms, Kev will be admitted to the hospital ASAP.  The transplant doc told us today that she's never done an allo where someone has avoided the hospital, so please pray for us.  This is a scary transplant because there are many unknowns.  A small percentage live with chronic illness from GVHD and 1 out of 10 people pass away from this procedure.  When you have won the reverse lotto many times, your brain is conditioned to go to these scary statistics and get cozy there. 

Jesus prayed this way, "Your (God's) kingdom come and Your will be done."  But what if God's will isn't what I want?  What if God's will is devastating to Kevin, me, or our children?  Cancer isn't God's will, right?  So why does Kev have cancer?  I do not have easy answers for these questions, and I truly don't think I am meant to.  My thoughts are flawed, fallible, and frankly, I often make poor decisions for myself.  God knows this, of course, and tells us to "BE STILL AND KNOW THAT I AM GOD."  Can a more simple statement of "trust me" ever be made?  I interpret it this way, "Kristin, stop thinking about everything and trying to figure out the outcome.  You have no idea what I'm up to because you're not me.  In fact, you should be thanking me that I don't leave decisions up to you." 

Here is the other piece of amazing news:  "Do not be anxious about anything, but in everything by prayer and petition with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."  (this is Philippians 4: 6-7).
Not only does God want us to be still and trust Him, but he also wants us to talk to Him about how we feel and how we would like things to go.  This is why it's a RELATIONSHIP with God, not a dictatorship where His will is stuffed down our throats.  Thank you for prayer, God, and for our ability to talk with you. 

And I thank you all for reading my words.  This is, by far, the most personal writing I have ever done and I trust that God does amazing things with messy honesty.

Love,
Kristin

 One thing that Kevin I have learned from cancer is how unpredictable life is.  Just when we think something seems solid enough to stand on, it changes and leaves us more befuddled than when we started.
 When Kev had his first transplant we were planning on 2 weeks in the hospital and were so disheartened when that day came and went, his levels creeping up at a snail's pace.
This time around we logically anticipated a longer stay in the hospital due to the poor state of his bone marrow going in (due to all the radiation), and the fact that BEAM is very strong stuff.  We thought a good goal would be the week of the 12th for discharge, anticipating a solid three to four weeks inpatient.
Tuesday he began the Neupogen (white count booster), and his levels responded well, doubling within a few days, and doubling again the next day.   We weren't too optimistic and were expecting it to stall out as it did last transplant.   BUT today it more than doubled, taking it to 1.03.  His bone marrow is actually in almost as good of shape as when he came in.   And we can't totally attribute all of this to the Neupogen, because his platelets went up too (which the Neupogen doesn't effect). The doctor is releasing Kev home from the hospital tomorrow,  on day +11, a very fast recovery time for this procedure.
 We, of course, are overjoyed and so, so grateful.   This is so unexpected, we are just thrilled.
 Both Kev and I can hear God telling us to stop guessing and predicting and to just keep finding Him in each strained moment.   We really don't know ANYTHING about what God  has planned or what He will do.   Perhaps if we knew how things would end up we would miss this wildly amazing and unfolding relationship with God.

I will post again in about 3 weeks when we begin transplant #3....or as Matt likes to say, "when I get to officially kick Kevin's ass."

 God bless you, everyone.

 Kristin

Kev finished the BEAM chemo last Wednesday and received his stem cells the next day.  The chemo was wretched and he is feeling quite poorly in general right now.  The chemo did the job of killing off his bone marrow and his blood counts plummeted over the weekend.  He began receiving Neupogen, a white blood cell booster, on Tuesday and today his counts went up slightly today, which is good.   He does have a low grade fever (he had one last transplant as well) which is one indicator of stem cell engraftment, but of course the docs have to treat him as if it's an infection and put him through a slew of tests and antibiotics.   It frustrates Kev and I when the doctors don't communicate well and therefore create an environment for undue worry.  A simple, "this is most likely engraftment but we need to be sure," would go a long way when you're lying in bed already feeling like you're a step away from death (okay-dramatic, but I'm not in the best mood today).  We're hopeful that this fever is, indeed, engraftment and that this won't delay anything.  I want to give a shout out to Kev because he really is an amazing patient.  He shared with me that when he leaves the hospital he wants people to say," that is a pretty awesome dude." I think we can all say, "true that."

Now, who would like to hear some good news?!  We found out yesterday that his allo transplant is going to be done on an outpatient basis!   Sounds crazy, right,  since this one is the "big one?"   Here is the science behind it:  an auto transplant is called "myelo-ablative."   This means that it wipes out the marrow, taking his counts to zero.   The allo transplant will be "non myelo-ablative"  meaning the chemo is lower dose and it only slightly lowers his levels.  So since his levels won't drop as severely and he won't be as at risk for infection, he can stay home.  The non myelo-ablation gives Matt's cells the ability to "win" against Kev's cells (which we know are bad since they let cancer run rampant).   This effect is considered graft versus host disease (GVHD) with the word disease being a slight misnomer since it's actually a good sign.  Some manageable GVHD is welcomed as it shows that Matt's cells are working (this seems a bit sci-fi to my brain).
Kev will still need to go to the clinic daily, and we have been warned that if they even sense something out of whack, he'll be admitted immediately.  The actual donor transplant will feel easier to Kev due to the lower dose chemo but he will probably begin to feel that GVHD about two weeks after. THAT can linger on for years.   Please pray that his GVHD will be mild (e.g. skin reactions) and not severe (e.g. liver malfunctions).   The fact that Matt is a perfect match is a good sign for this.

 We also leaned yesterday that it won't be 2 or 3 months after this auto transplant, but actually 2 or 3 weeks.  The docs don't want to give the cancer ANY time to consider returning.  We agree.

 We were also hopeful that the plasmacytomas would completely disappear after chemo so there would be no question of the effectiveness, but they are still visible and obvious to the touch. They have shrunk dramatically and the doc considers them to possibly be scar tissue.  We won't know the answer to this because there will not be a restage before the allo.   The allo will commence no matter what.

 We're hopeful that Kev can come home no later than the week of the 12th, and that this time passes quickly and uneventfully.   Nothing has happened this way for us yet so it's darn near impossible to stay positive without thinking in the back of your mind,  "well that's probably bull puckey." My prayers are beginning to feel like a laundry list of requests and pleas to God which, for whatever reason, He has just not been acquiescent (some of you may be thinking, "that's because there is no God", and trust me, I have my moments.....).
So here you are Romans 8:26, sharing with me that, "when we do not know how to pray as we should, the Spirit Himself intercedes for us with groanings too deep for words."   This amazes me because God KNOWS we'll struggle with this through a trial and He loves us so much that He's provided us with a way even when there is no humanly way.  Calling for God and asking the Holy Spirit to intercede for me has been amazingly powerful, reiterating my knowledge of the Truth.

Sometimes I panic because there is not enough time to write thank-you notes!  We are so thankful for all of you.  You are proof positive that blessings flow from God through the people He created.

May God bless you,
 Kristin

**  Some caveats:
I have no idea if I'm spelling myelo-ablative correctly.
I may be slightly off in explaining some things about GVHD... I'm a mere lay person.