Plan B

Christian Running from the fire Baan Pai Riverside Pai Thailand 2012 06 16 03 09 18  1

Photo used with permission.  Photography by Greg Goodman @ Adventures of a Good Man

 

The pastor’s wife of our church back in LA told me once, “Make your plans in pencil, and then give God the eraser.”  Well God, here you go:

In a little less than two weeks, Kevin will check into the hospital at Emory University (Clifton Road Campus).  He will begin a treatment called Interleukin-2 (IL-2).  The treatment protocol will be one week inpatient, then two weeks off for recovery, then another week in, then another two weeks off.  After that, he will be halfway through and they will conduct scans to see if the cancer is responding to treatment (i.e. shrinkage of tumors)  If the cancer has not responded, he will stop treatment and we will move on to other treatment options (of which there are several).  If the cancer has responded to the treatment, he will go in for two more rounds of one week on, two weeks off.  The total treatment time, should he make it through the whole thing, will be about three months.  We will start on Monday, July 9.

IL-2, much like interferon, occurs naturally in the body.  With this treatment, he will be injected with doses much higher than the body could make on its own.  The IL-2 does not directly attack cancer cells.  It stimulates the immune system, which targets and kills the cancer cells.  This is an FDA approved immunotherapy treatment for advanced melanoma.  And it sucks.

IL-2 will make Kevin very very sick, which is part of the reason this treatment will be inpatient.  He will be given a dose of the drug every 8 hours, starting at 11PM Monday night, and at every dose, the decision will be made to continue or not based on his body’s tolerance.  Similar to the interferon, common side effects include chills, fever, fatigue, sleep disturbance, nausea/vomiting, diarrhea, dry/sore mouth, possible decreased liver or kidney function, and a change in blood counts.  And oh yeah, it could affect his heart.  If he were to start having erythmia or something, they would move him to ICU, get him stabilized, then bring him back and hook him back up to the IL-2!

IL-2 is one of the oldest treatments out there, and it is one of the least successful.  It was FDA approved in 1998, and for 13 years, there was nothing else.  Just 10-15% of patients respond to treatment (i.e. some decrease in the cancer).  And in only 5% of patients is there what is called a “total response”.

Today there are several other treatment options, including ippilimumab, which is also a form of immunotherapy.  There are also several extremely new treatments that are called targeted gene therapy, as well as a few chemotherapy drugs that have shown some efficacy in melanoma.  Ippilimumab appears to show a 20% response rate, and some of the target gene therapies show extremely high response rates, 80-90%.  These treatments all have less horrible side effects than the IL-2 and are less invasive in a patient’s life (i.e. no three month leave of absence for treatment).

So, why would we choose the treatment with the worst likely side effects, the most grueling treatment regimen, and the least percentage of response rate?  Because we have decided to run straight into the fire.  You see, IL-2, while it has the least chance of “success”, it is the only treatment that can offer us data for 20+ year survival rates.  IF Kevin happens to be one of the lucky 5% for whom this treatment gives a total response, we could still have the chance to grow old together.  Basically, if it works, it could be a home run.

That’s not to say that none of the other treatments offer similar hope.  But drugs like ippilimumab, while they have shown higher response rates, have simply not been around long enough to have any data for long term survival.  Basically, the people for whom ippi has worked must live for another 20 years or so before that drug can give us those promises.  That may still happen, and if IL-2 doesn’t work for Kevin, ippi is still an option for us, and there is most certainly the possibility that we join the ranks of the survivors who are blazing that trail.

The two other classes of drugs that fall into this category of systemic therapy (total body treatment) are chemotherapy and targeted gene therapy.  Chemo pretty much sucks and is not very effective, so it is rarely suggested these days.  The main chemo drug that has shown any effect at all on melanoma, dacarbazine, was FDA approved in 1975, has a 15.3% response rate, and NO significant improvement in overall survival.  Targeted gene therapy seems to be where it’s at for the big advances in melanoma research, and there have been TONS of new developments in the past 18 months.  But, while most of the treatments have amazingly high response rates, the results have not been long lasting.  Most patients have seen their melanoma recur just 8-10 months after treatment.  There is a race going on in that area of research and literally every month new advances are made.  The treatments are generally not toxic to the body, have shown great results, and seem to suggest that if they could get the right combination, perhaps two different targeted gene therapies, or a combination of targeted gene therapy and immunotherapy, they might see significant improvements in overall survival.  But they’re not there yet.

Which brings us back to why we decided to run straight into the fire.  I’m not sure what I was thinking when I posted yesterday that we weren’t brave; we hadn’t run into the fire, the fire has sprung up around us and we just haven’t run away.  yet.  Maybe God wanted to teach me something, I don’t know.  Or maybe it was all just a coincidence.  But I don’t really think it is, considering I wrote those words just hours before we discussed these treatment options and the logic behind starting with the most difficult, least successful treatment.  And I’m still not ready to say we’re brave.  We are trying to be brave.  We are scared out of our minds, and both of us are thinking that this is more than a little bit crazy.

Kevin will have to take a three month leave of absence (unpaid, since he only has long term disability insurance, not short term).  I will most likely be staying with him in the hospital while he endures a hellish experience that neither of us can really wrap our minds around.  And the logical, data driven part of me thinks that the treatment is unlikely to be successful. Before you tell me that I’m being negative, think about it.  It’s true, by accurate statistical language, it IS unlikely to be successful.  In fact, it’s at least 85% likely that it will NOT make any difference at all.

But this feels right to us.  We see examples all the time in the Bible where things are backwards… the least shall be greatest, the first shall be last, etc.  God plucks out the most unlikely people, the prostitutes (Mary Magdalene), the tax collectors (Zaccheus), the alcoholics (Noah), the “losers” to be his greatest leaders.  God shows us time and time again that He turns things upside down and then we come out whole on the other end.  In our heads, we think this probably won’t work.  That’s the only rational thing to think, given the data.  But thank God we don’t live our lives by reason and outward data alone.  I know that we must believe somewhere in our hearts that God can make this work.  Otherwise, we simply wouldn’t do it, plain and simple.

Kevin and I are not really risk takers.  We like data.  We like to consider the pros and cons.  We do cost benefit analyses on just about everything.  And doing this simply does not make sense.  But this is his life we are talking about.  And if we believe there is a chance, no matter how tiny, that he could have lasting results, then we are jumping in with both feet.

I know that is is always me writing these blog posts, and so you all might not feel like you get much of a picture of how Kevin is doing with all this.  Well, let me share with you a story of what happened at lunch yesterday.  Keep in mind, those of you who know Kevin, that he is probably the most data driven, conscientious person you have ever met.  I sat across the table from him, and both of us were abuzz with the plans we needed to make before treatment would begin on the 9th.  But I stopped and said, “Wait, we need to back up and make sure we are both really on the same page here.  I want you to try this treatment.  It’s crazy, it’s probably not going to work, and it’s going to be hell.  I want you to give it a shot.  But it’s your body, and I would completely understand if you didn’t want to.  I don’t know if I could do it.  If you don’t want to go through with this, I am 150% behind you in that choice, and we’ll try something else.”  Without flinching or hesitating for a second, this man who NEVER answers me right away on ANYthing, said “We’re doing it.  Yes, it’s seems like there’s no chance, but really it’s the best chance we’ve got.”

The best chance we’ve got.  The choice that seems the most risky and the least likely to succeed is the best chance we’ve got.

If you cling to your life, you will lose it; but if you give up your life for me, you will find it. – Matthew 10:39 NLT

It’s backwards, you see.  Backwards and upside down.  Doing these things that make no sense.  But the promises God has made to us if we can just let go and be backwards and upside down, just give up our lives for Him… those promises are the best chance we got.

A Storm Brewing

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It’s 6:30 AM and I’m sitting on my front porch as I write this post.  There is a storm brewing.  I can feel it from the stronger than normal breeze.  I can hear what sounds like freeway noise, but I know it’s not.  I can smell it in the air.  We need a storm.  The ground needs water to drink up and we could all use a break from this incessant heat.  And here I am complaining about the heat and it’s not yet July!  For anyone who’s ever been through an Atlanta summer, you know what I’m talking about.  The heat is coming, and it’s gonna be bad.

During this past week, I’ve thought a lot about that heat.  Somehow, it makes everything seem more intense, more heavy.  And of course that got me thinking about analogies that involve fire.  You know the ones, your feet being pressed to the fire, the burning bush that is not consumed of its fire, heck I’m even thinking about the Colorado wildfires that have been raging for over three weeks.  This is an excerpt from a morning article in the LA Times about the wildfires

Colorado is on fire. The state is roiling under the devilish orange-glow threat of at least six massive blazes that have forced thousands to evacuate. Fire officials said there was little chance of containment of the state’s largest and most destructive High Park fire any time soon.

Little chance of containment any time soon.

What is it about fires and storms?

They’re scary and devastating, and I wouldn’t wish a destructive storm or a wildfire on my worst enemy.  And yet, somehow, they are never all bad.  Storms that wreak havoc and destroy bring opportunities to  rebuild and often galvanize fractured groups to work toward common goals.  Wildfires are commonly allowed to burn to clear out years of dead wood and vegetation, again allowing life to regain entry into fallow ground.

But you know what?  When you’re in the midst of a storm or a fire, all you want is to get the heck out!

People have told Kevin and me a lot that we are so brave.  I have always found that odd.  I think of bravery as running into the fire, perhaps to rescue someone helpless and noble.  We didn’t run into this storm, it rages around us.  Trust me, there is NO WAY I would have run face forward into this storm if I knew what was coming.

But I suppose we actually did.

See, when we chose to put our faith in Jesus, He didn’t promise us a way out of the storm.  He didn’t promise us that fires would not blaze around us and scare the dickens out of us all the while.

No, He promises something so much more beautiful, and, frankly, life giving.  He promises us that the fires may burn, but they will not consume us, that the storms will rage, but we will not be broken.  He promises us that for as long as we live in a world of sin and brokenness, we will know sorrow.  He promise that!  Doesn’t that suck?

But I think, regardless of where you put your faith, we can all agree that this world really is filled with brokenness and sorrow.  There is absolutely beauty and joy to be seen everywhere we look, but there is grief and there is pain as well.  It is simply a part of the human experience.  And that, I think, is what I am working through right now.

We will fight this cancer as hard as we can.  When Kevin is weak, I try my hardest to be strong, and I will drag him across the finish line of whatever the next treatment is, because I am NOT giving up.  We will pray without ceasing that God chooses to keep him around here for a little while longer.  But we also know that that may not be the way things work out.  Kevin is not scared of dying.  He knows that he serves a good and gracious God and that he will be spending eternity with him, through the grace brought upon by our savior.  But we are both still scared of what life would look like without him.  What it would be for me, for our kids, for the friends and family and co-workers who know and love him.  We are so far from certain how this whole act will play out.  It’s high drama, folks, and I can’t tell you what will be the next twist or turn.

But I can say this.  Kevin can say this as well.  This is the only thing we can say with complete and absolute certainty.  God is good.

God. is. good.

No matter what, our God is good.  He loves us, He cares for us, He desires goodness in our lives.  And yet, the great mystery is that things pretty much suck right now.  I don’t know why.  I don’t know why us, why Kevin, why the cancer came back so quickly.  And quite frankly, why is a pointless question.  It may be different for other folks, and I don’t want to step on that, but for us, there’s just no use wondering.  We’ll never have an answer, not in this world at least.  So we cling to the one thing that does give us answers.

God is good.

All the time.

In our past.  In our present.  In our future.  In our fires and in our storms.

God is good.

Our unchanging Father who loves us more than life itself (He did, after all, give His up for us), He is good.  That’s it.  He is good.  There is nothing more to cling to, no huge analysis of this idea, simply that we are trusting in God’s goodness.  That’s all we have, and it’s enough.

Quick update

Just a quick update.  We got news today that the MRI came back positive for a small spot of melanoma on Kevin’s liver.  We have an appointment tomorrow at 9:20 in the morning to discuss treatment options.  A big thank you to my sister and brother in law and to my parents for keeping up with the kids while we process all of this.  We will keep everyone posted.

A peace that passes all understanding

I’m writing a post I never thought in a million years I would write.  Well, I never thought I would be writing this post either, but I’ll be honest with you, I look back and feel like my thoughts and fears back then were over-exaggerated, and that I knew deep down that we would be okay.  Because stuff like this doesn’t happen to people like us.  Kevin and I have an amazing marriage.  We have two beautiful kids, our perfect boy and girl.  Less than two years ago we had moved to Atlanta in a step of faith that seemed to be coming to fruition in a job for Kevin that was a perfect fit, an amazing dream house in a neighborhood that gave us a fulfilling sense of purpose.  I have seen my children’s and my relationship with my parents and my sister and her family grow and blossom in ways that confirmed that moving to be closer to them was a part of God’s perfect plan.  We have had challenges and quite honestly felt like we’d been “kicked in the nuts” as my friend would say, more times than we can count in the past year.  From a NICU stay to three insurance battles… from monster car repairs to trees falling through our backyard… from shady contractors to three surgeries, six and a half weeks of radiation, four weeks of high dose interferon, and a month of subcutaneous interferon… God has carried us through.  We both honestly thought that we’d just be plodding through this horrible year of interferon, wipe our brows and say, “Whew!  I’m so glad that really difficult period in our life is over… Now we can get back to living!”  We were both preparing and processing how to deal with the fear that someday the melanoma might come back, and how to live our lives without always just waiting for the other shoe to drop.  But other than that, we really did think we’d simply be giving God the glory for carrying us through, and what an amazing testimony we’d have!

Everything changed last Tuesday.  We went in for a one month follow-up to discuss how Kevin was doing on the interferon.  The doctors took one look at him and were concerned.  They ordered a PET/CT scan and an MRI for as soon as possible, which was Thursday.  They never used the R word, recurrence, but I knew that that was what we were looking at.  Even though the scans hadn’t yet been conducted, my hope was shattered on Tuesday.  I remember sitting at breakfast with Kevin, tears streaming down my face; he asked me what I was thinking about, and I told him that I didn’t even know if he wanted to be buried or cremated.  I told him that I didn’t know when the mortgage was due, or how one pays the bills or any of the hundred other things necessary to keep a household together in the first month after someone is lost.  I told him I didn’t “think” he was going to die, but I “felt” it at the same time.  I told him I felt guilty for feeling that way, just horrible, and selfish for being more concerned for myself than him.  I told him that I wondered how melanoma would make him sick if it did… up to this point, all the sickness he’s had has been related to treatment.  I cried and cried and didn’t eat a bite of my breakfast.  The poor waitress, as she was wrapping up my meal and Kevin was paying the bill… she asked me tentatively, “Are you okay?”  And I thought, now it begins.  Now I have to start making the choice every time, do I give someone an out and say, “I’m fine, just having a rough day… thanks for asking.”  Or do I just come out with out and decide not to care how awful it makes the other person feel.  I chose to be selfish in that moment, and plainly told her, “Thank you for asking, no I’m not.  My husband has cancer, and we think it may have come back.”  The look of horror for what she had said was apparent on her face and I immediately followed with, “It’s okay… thank you for asking.  Don’t feel bad.”  She fumbled around and weakly said, “Well, come back.  We’ll feed you.”  I am so grateful for her mercy and tenderness in that moment.

I don’t know why Tuesday was the rougher day for me.  We didn’t even know then, but for some reason, maybe the fact that the doctors had acted so swiftly, Tuesday was when I lost it.  I pulled it together enough to make home and Kevin, bless that man, headed back to work.  I know what you’re thinking, how can he work through all of this?  But really, how can he not?  He felt well enough to be at work, and there was nothing else to do, except perhaps to sit around and feel sorry for one’s self.  And we all know how far that’s ever gotten us.  His only concern was that I didn’t have to be alone, and I had a friend waiting at home with the kids for me.  So off to work he went and home I went to get back to “real life”, changing diapers, handling tantrums and time-outs.

I kept as busy as I could for the next couple of days and made childcare plans so I could be with Kevin for his scans Thursday morning.  I won’t say we felt some amazing peace that morning, it’s just… well, it was what it was.  We weren’t sitting there biting our nails and freaking out, but we weren’t sitting there feeling all zenlike either.  I read crappy waiting room magazines and Kevin read an IT exam prep book on his kindle.  For those of you who might not know, these scans take quite a while, and they shoot Kevin up with this crazy radioactive dye (the syringe is literally in a lead box) and then they leave us alone in a lead lined room for an hour so that it can spread through his body!  I remember thinking about the absurdity of it all, trying to find out if he has cancer by injecting something that could cause cancer into his body.  Not that they take it lightly or anything, but it was another indicator of how serious this all is.

After we were done, Kevin again headed back to work and I tried to get a few things done around the house while we waited.  My parents still had the kids, and, for the first time in months, Kevin was actually feeling pretty good by the time he got home that evening.  We decided to try to actually get out and go somewhere and ended up at Centennial Olympic Park, spread out on an old quilt, dozing lazily in the evening sun.  It was so nice.  I know that is such a simple sentence… It was so nice.  But see, that’s exactly what it was, simple and quiet and really just… nice.  I remember daring to hope, for just a second, that the scans would come back clear AND they would say that the interferon was just not being well tolerated by him, and that we would just go off everything and wait for it to hopefully not return.  I thought, wouldn’t that be so nice to get our life back?  To have more evenings like this, perhaps with the kids toddling around in the ring fountain?  Wouldn’t it be so nice to be able to plan a real vacation, or to be able to take evening walks down to the park with the kiddos?  Wouldn’t it be nice?  This here, this right now, this is so. nice.  I remember thinking, is that so much to ask, God?  I’m not asking for amazing.  I’m not asking for all my dreams to come true, to be a millionaire, to be able to travel the world, I’m not even asking anymore to be able to grow old with this man, because that is starting to seem like too much to ask for.  I’m just asking for nice.  I’m just asking to have our life back for now.  Just for now, you know?  That’s not too much to ask for, right?

Friday morning we got the call that confirmed my grief from Tuesday.  We were brought in to confirm via a fine needle aspiration that the cancer had, indeed, returned to his original primary site.  They also scheduled him for an MRI of his liver to confirm whether or not the spot that was glowing on the PET was also melanoma.  As I write this on Monday morning, we are awaiting results from that MRI which will help to determine a treatment path.   The spot is most likely melanoma, and we are prepared to hear that news, because our doctors explained to us that for the melanoma to have recurred at the primary site, after surgical removal, heavy doses of radiation, and all of the interferon, it suggests that the cancer is very aggressive and that it has probably spread to other areas, even to areas that did not show up on the PET scan (the PET can only detect cancer cells in larger amounts).

Oh geez, I cannot believe this.  As I am writing this, Kevin has pulled back in front of the house (he was on his way to work), and he has a flat tire!  This was after he was so nauseous this morning that he needed to rest back in bed for a while before heading into the office.  I just got back from helping him get the tire changed and having a friend help him get the car over to our mechanic and drop him off at work.  Seriously, God?  Seriously?!  And of course look at me, the thing I’m complaining to God about is that flat tire, not the cancer coming back!  That’s the crazy thing about all of this.  It’s the little things that break you.  It’s the little things that wear you down.  Maybe that’s why it was too much to ask, at least for now, for the little things.  I don’t know.  It sure would be nice to just have “nice” for a while.

Now I know I can’t end this post on a negative note.  It’s not good for me or anyone.  Although I’ll admit I’m pretty tired of always trying to find that silver lining.  Quite honestly, there is no silver lining here.  A recurrence in Kevin’s situation is bad.  It’s very bad.  It’s put everything else in a different perspective.  We want to  take a trip to LA to see family and friends.  We want to get rid of this debt we’ve amassed this year.  We want to get things in order around the house.  And Kevin wants to start writing letters to Jude.  God, just writing that last sentence gave me pause.  This is so. hard.  This is so hard for Kevin.  It’s so hard for me.  It’s so hard for our kids.  It’s so hard for our friends.  It’s just. so. hard.  We think about the bad things, the worst case scenarios, and we talk about them.  It’s better that way.  It’s like we’re staring down our fears.  But not for too long.  We talk a little, discuss some plans, and then talk about something else, or watch some TV for distraction.  Or we try to pray.  But honestly, praying is the hardest thing right now.  I have no words as I try to speak to God.  I just start crying or moaning.  But I know that he hears my prayers through the cries of my heart regardless.  And that is a beautiful thing.  And then we feel a little better, and then we stare down the bad stuff a little bit more.  And then we got put Jude in timeout.  Or change Evie’s diaper.  See, that’s the way it goes with this.  It’s not all drama and crying or rejoicing like in the movies.  Of course, it makes sense that the movies wouldn’t show all the boring stuff, like how you still have to go to the bathroom when you’re done crying, or do the dishes, or change a flat tire.  But that’s the reality of it all.  This weekend we’ve been kind of numb sometimes, kind of in a funk or feeling down sometimes, and some of the time, we’ve felt complete and total peace.  We’re grateful for that some time.

And when we are able to feel grateful, that’s when it really gets good.  We can think about how there truly are very real options for treatment, as much as it feels so discouraging.  We can think about how there have been more advances in melanoma treatment in the last 18 months than in the last 15 years, how two years ago this would have been a death sentence, but that it isn’t now, not yet.  We can think about how amazingly grateful we are that we are the absolute best treatment center with the top doctors there.  We can think about the financial provision we’ve had and the amazing ways that friends and family have stepped up and shown their care through repairing roof leaks to coming over and helping me clean my house.  We can think about what an amazing marriage we have and how that will never change.  We can think about so many things that we have to be grateful for that can never be taken from us.  And in the moments that we can feel that gratitude, that we can remember the multitude of gifts and blessings that have been bestowed upon us, in those moments we can feel at peace.  And it makes no sense at all.  For that I am eternally grateful.

Please pray for clear scans and clear direction for doctors

 

This will be a quick post, with more information and details to come later.  We just really need your prayers.  We had a doctor’s appointment yesterday and there are several things that are concerning the doctors regarding the severity of his side effects from the interferon and something that may possibly indicate a recurrence.  They have scheduled a PET scan and an MRI for tomorrow morning (8 and 9:30 respectively)  I believe that they will be able to begin interpreting the results shortly after the scans have been conducted, so we may have some information as early as Thursday afternoon or more likely Friday.  We are both discourage and I particularly am scared, but we are trusting in Jesus.  We ask for your prayers for these things specifically:

Complete and total healing for Kevin’s body

For the scans to show with certainty that the cancer has not come back or that it has and that there is a clear direction for the doctors either way

For peace for our hearts and minds

For rest and comfort for Kevin’s body, as he is so exhausted both mentally and physically from this whole ordeal so far

That it be well with our souls

 

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When peace, like a river attendeth my soul

When sorrows like sea billows roll

Whatever my lot

Thou has taught me to say

It is well, it is well, with my soul

Interferon… end of month one

We are at coming into the end of one full month of the maintenance phase of interferon.  It feels like it’s been a whole lot longer than just four weeks.  Honestly, it seems like it is just as hard for Kevin as the high dose phase was, with the exception that he doesn’t have to be at the hospital half a day every day.  But the one benefit there was that he was only having to work half days, so in that respect, this is harder for him.  He gives himself the shot and sleeps off the “worst” of the effects, but that is honestly such a relative term.  Pretty much all day long, everyday, he feels tired and achey.  Sometimes he has a headache, but the worst part is that he has nausea that comes out of nowhere.  It is not predictable when it will hit or for how long it will last.  The anti-nausea meds do work to some degree, especially helping to stop it after it has started, but they do not seem to prevent it.  He also struggles with constipation due to the different drugs, so it’s lot’s of colace, water, zofran or compazine, tylenol, and time in bed.  I try to cheer him up by telling him he seems like a pregnant woman on bedrest!  I remember the constipation was something NO moms warned me about ahead of time and was shocked and embarassed!  That gave him a little smile, but mostly he is feeling discouraged.  He is so sick of being sick, basically, and we don’t really know how much this will all help, so that makes it doubly hard.

But it hasn’t been all bad.  On Memorial Day, Kevin had the day off and really wanted to try to go somewhere with the kids.  We carefully chose something that didn’t seem like it would be too much for him or the kids (or me, since I was taking care of everybody!)  We went to Centennial Park and enjoyed some time by the fountains.  The kids didn’t really get in much, but they definitely enjoyed puttering around and watching the other kids.  Jude and I flew his airplane a bunch of times and we all sat around and ate lot’s of grapes and pineapple.  We lasted about an hour and a half!  But it really was perfect, and Kevin and I were both feeling pleased we’d done something approaching “normal” life.

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I have also finally discovered the Atlanta Library, and we have been taking full advantage of the summer morning programs at libraries across the city.  So far we have gone to see an incredibly talented storyteller, a magic show, and a toddler storytime.  We are 2 for 3, as I had to remove my 17 month old daughter from toddler storytime for being too disruptive (she kept wanting to steal all the other kids snack cups!)  

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But it wasn’t a total loss that day… I found a delightful little park called Peachtree Heights East, and it had a huge lawn and a beautiful duck pond.  We headed over there and spent the rest of our morning before heading home for lunch and naptime.  I’ve been trying to keep things simple for me and the kids while still getting us out of the house doing a little something most days.  I’m finding that I’m in a better place mentally, the kids are happier and less whiny, and amazingly, the house doesn’t get trashed everyday since we’re not IN it all day long!  I’m continuing to make sure I keep a balance to not keep us too busy or get me burned out, but so far it’s working, and it’s been a nice change of pace.

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We also got a family pass to the zoo, thanks to some birthday present money for Jude.  Since Evie doesn’t take a morning nap regularly anymore, we can actually do all these morning outings, and I feel like this summer we are starting to reap some of the benefits of being right in the city.  Centennial Park, the Atlanta Zoo, and most of the libraries we’ve been to have all been within a fifteen or twenty minute drive of us or less, and so it’s made for easy, short morning outings.  We made our first zoo trip with my sister and her family, and it was such a blast!  I could tell that Jude is at just the right age to start going, and as both of my kids grow, we will be able to pop in for short visits to explore various animals or exhibits in depth.  The zoo is a little busy right now during the summer, but my friends who have passes have shared that it’s positively empty during the weekdays in the fall, winter, and spring, so we’ll definitely take advantage of it a lot then.

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So basically, we are trying to keep a little busy but also keep things pretty quiet around here.  Kevin is sick a lot, and I try to be there for him as much as I am able with the kids.  Let’s just say I am building up some good quads running up and down the stairs between Kevin and the kiddos!  We have a doctor’s appointment tomorrow morning, so please be praying for a good report, answers to our questions, and hopefully some solutions to this continuing nausea for Kevin, which is by far the worst part of all of this.

Love to you all our good and faithful friends, your support means more than you can imagine.

-Rachel

Interferon Sucks

We are a few weeks into the maintenance phase of interferon, and as usual in our life, it’s been an endless series of highs and lows.  I’m writing this post from the ER, as I made a command decision to take Kevin in after several hours of vomiting.  I feared dehydration and just knew we needed to get something in him to get him feeling better.  We are awaiting results of labs and to see the doctor before getting hooked up to an IV for fluids and nausea medications.

Overall, this phase of the treatment has pretty much sucked.  Kevin is sick a lot, and more frustratingly, he is sick at seemingly random times.  Often he will give himself a shot and feel okay the next day, but crappy the day after that.  We are trying to figure out the best combo of side effect medications, timing, etc. but haven’t had a lot of success.  This past week has seemed a little worse than the previous weeks and that is also what led to this evening’s trip to the hospital.

Gosh, I’m trying to think about what I need to write here to share updates with everyone, and honestly my mind is  mush.  Let me see, what are some of the things that have happened in the past few weeks?

One huge blessing is that a friend of my sister and brother in law called me up and had his roofing crew come and make the needed repairs in our leaking skylights.  He is also walking me through the right to repair process to sue my contractors for the necessary repairs. Having him take care of this has been a huge load off of my back as it’s just been one more thing to be having to deal with right now.  And get this, the roofing guys discovered that all three skylights were installed upside down!  Seriously?!  Anyway, words cannot even begin to express how incredibly grateful I am that Ty and his family have reached out and helped us in such a tangible way.  Thank you, thank you, thank you again.

My sister and I turned 33 on May 19, and I barely took a moment to catch my breath.  It was a full day with Kevin being sick, Ty coming by in the morning to check out the state of the skylight leaks, trying to prepare to host one leg of a neighborhood fundraiser, and keeping up with two toddlers.  But the day managed to turn around with help from some wonderful friends and family.  Kevin actually felt well enough to go to the porch crawl with me, and we ended the traveling party at our house, tired, but happy.

The next week was more of trying to get Kevin’s side effects under control, and me trying to keep picking up the pieces from the month of high dose interferon, where I pretty much ignored every other aspect of my life except trying to care for him.

But that Tuesday we were given a wonderful treat in the form of VIP concert tickets to the Dave Matthews Band.  Kevin’s cousin Claudia’s husband’s best friend is a concert promoter here in Atlanta, and they got us the hook up.  How’s that for a connection?  Anyway, it was awesome.  I had told Kevin during his last week of high dose interferon, when he was feeling so discouraged, that I was going to be able to reward him for pushing so hard with tickets to the DMB.  It was exactly the encouragement he needed.  And the day before the concert, we found out that we were getting the VIP treatment, with VIP parking, passes to the VIP room, and 7th row seats.  What made it even more great was that we live just a few minutes away from the concert venue, so it was a fun, easy night out.  Kevin was feeling pretty crappy that day, but was determined to make it to the show, and the ease of having the concert close by, the up-front parking so no trekking across a giant parking lot, and the awesome seats made it just a truly wonderful night for both of us.  Thank you, thank you Clay, it was an awesome night!

After that it was back to more interferon shots and more trying to get the side effects managed.  Kevin is still able to work, and we’ve discussed whether or not we need to think about alternate arrangements, but he says that honestly he’d probably be doing worse if he were to take a leave of absence or something.  He feels like work is a welcome distraction and gives him something else to focus on.  Plus, he’d probably be feeling depressed if he was just sitting around all day feeling like crap.  So instead, he goes to work feeling like crap.  But well, have I mentioned that that man is amazing.  How he gets up every morning, throws up for twenty minutes, then showers and goes to work is beyond me.  He told me that this past week he had to get off a call to go throw up.  But he is pushing through and we are truly taking it one day at a time.

Alright, I always write up posts and then never publish them because I want to revise and edit and make it all cohesive and put pictures in and whatever, and then I never get around to it and then the post gets hopelessly out of date and then I get to where I haven’t posted in like three weeks, so let’s just call this long, slightly incoherent, picture-less post a miserable update and we’ll leave it at that.  Please keep praying, ya’ll.  We’re hanging in there but it’s tough and there’s still a long way to go.  Thank you all for the love and prayers.