Peter Bear Update – June 22nd, 2012

Peter wrapped up another week of summer school and seems to be really enjoying it! Summer is his season!! He loves being outside and has taken to the swimming pool like a fish to water. He tries to swim and is starting to coordinate moving arms and legs at the same time. I think we have a future great swimmer in the family. We had hoped for swim lessons this winter but with all else that happened they are on hold. At least now we know that when we start them up he is no longer afraid of the big pool. He will actually stand on the edge of the pool, carefully put his toes over the edge and lunge right in. Fortunately he waits until he knows you’re ready to catch him – and not just jumping on faith. G was not too excited about the big pool at first but is following his lead and really enjoying it now. They both play in the baby pool – they will sit down with their head barely above water, move their arms like crazy and squeal in excitement as they shout out that they are “swimming”!

Peter working on blowing a whistle.

Overall Peter is doing well. He’s been waking up at night again, but with a drink will often go back to sleep in his own bed. John has been very good about working on keeping the kids in their own beds at least until early morning – in which case I feel treated by having them snuggle up to go back to sleep for a little longer and then wake up smiling and hugging me! Peter is still on 50% of chemo but his lab counts were really high this week. Historically that has correlated to him coming down with something so we need to keep an eye on it – it may also be his body telling us it is ready to go up a bit on the chemo. Will wait to hear back from the doctor. Peter is supposed to go back in the week after next for a lumbar puncture – the chemo that goes into his spine usually wipes him out but he should be recovered before we head out to Montana.

We did have a long conversation with one of Peter’s doctors this week. I felt very discouraged after the last visit where John was told we had to follow protocol no questions asked. It was a very good conversation and both John and I felt re-assured that our concerns were listened to, our opinions were valued, and our interpretation of treatment and risks were accurate. We came to some agreements on ways to manage Peter – but will have continued discussions around better tracking Peter’s progress, improving our trending, and responding appropriately with the treatment. John and I felt encouraged that we were able to continue the dialogue and allowed to continue to advocate for Peter. Clearly more discussion is needed but at least the door is still open.

I so wish all of you still reading these updates could just see Peter for a few minutes and soak in the joy he has enjoying this summer. After such a long and hard winter – it is so inspiring to see him running around the yard, laughing hysterically with G, chasing after balls with Alexandra, and getting into trouble by pulling too many books off the shelf (again!). His confidence continues to increase and he walks around with a great sense of purpose and determination. He gets lost in a book, snuggles up to the boys to play games, or just enjoys hanging out. When things feel the most stressful I force myself to slow down, and just gaze at the joy Peter has at still being in this world with us! His smile inspires me every time!! It breaks my heart when he cries because of the chemo and steroids – but his resilience teaches us all how to bounce back with a smile and keep on enjoying life. I wish I could bottle his essence!

We hope you are enjoying your summers too!

xoxo
Catherine

Personal Project: Purpose Statement…family style

A compass to NAVIGATE!

Here I am on my journey. A week ago I was getting ready to sit down and declare some victory in my quest to navigate – to live powerfully and purposefully. I was feeling good! All the tools I was implementing took stress off my shoulders and I felt I had more “time” to do what is important. Wow! Here a few tweaks and a huge improvement……then reality hit and things started to unravel at work. Is that not the test to any new resolve?! My plate filled up and I was ready to set aside my personal project for a week and work long hours. Just a week to get over the hump and be in a better place. Reality is there will always be that “something” that gets in the way. Instead of the barrier we will call it a hurdle. And for anyone who saw me in high school – I am not graceful and sometimes I knocked a few down, but eventually I made it over (or through) the hurdles and to the finish line.

So, when the stress level went up I looked over to my inspiration board yet again…..”the greatest danger is in letting the urgent crowd out the important….”. It was a lot of “urgents” while my “importants” waited for me to climb the basement stairs from my office to be with them. A bit of give and take but, navigate I did – the best I could! My little tug boat took a few direct hits from storms…..hurricanes…. but at my desk I am keeping our family purpose statement. My compass. A few family meetings after starting our family purpose statement we unanimously approved out purpose statement and goals.

The Krause Bears: simply living faithfully, loving unconditionally, and making memories together. 

Amongst our goals we declared “prioritizing family time above lesser values…“. I am by no means implying work isn’t important – it is in so many ways – but if today were my last day I would not want to spend all of it at my desk. I strive to lead my children by example in working hard, taking responsibility and being thankful for the blessing of having a roof over our head, food on our table, clothes on our back, and many opportunities to give back. I also want them to know that they are the “importants” in my life. It was a few very early mornings at my desk, and a few late nights after everyone was in bed. But in-between we made new memories cooking dinner together, enjoying the pool, and staying up way too late playing UNO.

In the spirit of our purpose statement, yesterday we celebrated Fathers Day. John had texted me earlier in the week asking to get his new dream saw as his gift. I agreed, and the kids and I “moped” about how we would just have to wrap the box it came in and have him feign excitement as we took pictures. During our brunch, Alexandra delivered the “saw” to John who almost immediately detected the size and weight were a bit off.

Instead, we gifted him with a box of “making memories together”. Inside were six little projects picked out at the craft store so that he can have some one-on-one time making something together – Alexandra is a small unfinished shelf with drawers and hooks we hope to use to keep our rosaries together; Michael a Robo-bug kit using recycled cans; Jack a small rock excavating kit with pouch and log so he will remember types of stones to look out for on our upcoming trip to Montana. The most emotionally invested was Tommy who excitedly found a small plastic green house to grow strawberries – he dreams of making strawberry juice with our juicer. He is going to need some patience from John to accept that they don’t grow over night! Gretchen and Peter found some felt art to be colored……G went for the space picture and Peter the princess picture. It was simple, it was assembled with love and oh do I look forward to the memories in the making.

No doubt there will be more hurdles, more storms, more hurricanes and a few more bumps along the journey. With compass in hand, this mama bear will continue to navigate life day by day, enjoying moment by moment, and growing along the way.

xoxo

Catherine

Personal Project: Navigate

Captain’s log: day one…or so!
Year in and year out, for the last many years, I have vowed to do better. Be more purposeful, simplified, and organized – inside and out. I am visual – visual disorganization creates internal stress and chaos. The last several years I have been pregnant or nursing, juggling a full time job and taking on more and more. In some odd way, the more I felt I was failing, the more I took on. Filling myself with things that mattered to me and believing that if I could do good I would feel good. Seems natural right? But the reality was I was becoming more and more overwhelmed – often leaning on John’s shoulder and sobbing as I muttered “I am such a failure!” He would argue with me – which normally didn’t end well – because I just wanted to be heard.
Trying to be all things to all people at the level I expected of myself – and accomplishing none. Those moments of overwhelming despair were usually those days I hit rock bottom and could no longer compartmentalize. I could not see what I had accomplished through all I felt I could, should, would do if I was just “better”. Mad chaotic to-do lists with every conceivable project possible so that I would forget nothing. Then guilt – not feeling like anyone that mattered to me was getting the best of me. And for those of you that seek to reassure me it wasn’t as bad as I am thinking…..you missed my umpteenth time of screaming at Alexandra to get in the car (again!), yelling at kids for not making life easier by at least cleaning up after themselves – grilling them on what was going to happen when their clean-up fairy aka maid aka mother had a heart attack from stress. Reading them the riot act while describing life under a bridge if I lost my job because I was going to be late to work yet again while driving like a bat-out-of-hell to get them to school on time. Yep – my brilliant parenting moments – followed by guilt on the drive into work and reminder that I must not die before the kids come home or that less-than-stellar parenting moment be their last memory of me.
I like to presume that I haven’t always been like this…..but I haven’t always had 6 kids, a home, a husband, a full time job, child medical challenges and everything that comes with that – mess, activities, cooking, cleaning, grocery shopping, laundry, socks, papers, projects, school work, sports, more socks, appointments, more socks and more appointments, travel, lots of work, lots more laundry and many, many, many socks! But, I have in the past felt better – more focused, more fulfilled. Maybe I had more time and actually got through my endless lists and still got up early to start my day with prayer and meditation. Maybe I just didn’t expect as much of myself. Maybe I just didn’t have as much to do. In reality it was all of the above.
Many days I just plod through with a smile until I realized the mountain is getting bigger and bigger – then I have an “I-so-suck day”. Recently I was selected for a mentoring program at work. With mixed emotions I jumped into it – fearful of taking on one more thing I would fail at, but excited to have someone on the outside looking in help me achieve my goals. We talked on the phone one day – a get to know you chat. Then we met in person but he had to leave early, so disillusioned I really thought I should have not agreed to it. I worked on a mission statement and goals – which I then sent to him. Following the guidelines of the program, for our first meeting I sent him a structured agenda. Phew….one thing done right…..NOT!
Anxiously waiting for his call, we finally connected. In my best professional manner I jumped right into things. He stopped me in mid-air, told me to throw caution and structure to the wind because marking off check boxes and following someone else’s plan for mentoring would not give me what I needed. Clearly he tossed my agenda aside and we started talking. It was in that conversation that he said to me “don’t be a victim – navigate Catherine!” That spoke to me at so many levels as I have shared in other posts. The whiteboard hanging on the wall across from my desk has two things written on…and one of them is NAVIGATE!

inspiration board: Navigate! ….the greatest danger is in letting the urgent crowd out the important…..

Then next time we met I asked him if that word was intentional to which he said yes. He told me in life there are complainers (whiners!), survivors (just try to keep their head above water but take no risks), and navigators willing to take risks to purposefully and rewardingly experience life. I acknowledged being all three. Actually, all three in any single day. He chuckled, complimented my honesty and told me that now I would work on it. We discussed what works for him and I implemented even small organizational changes right away. Immediately I felt the fruit of the small changes and was thankful!
Ultimately he was challenging me to navigate life one day at a time (I still need to learn how he handles the big stuff) – purpose, organization, simplicity, joy. Before I add you can buy all of this for just 3 easy payments of $99.99, let me point out I don’t believe in easy fixes. It took me discipline and focus to get there before, and then a lot of kids to let me slip…..what is the rule for how long I can blame maternity leaves for the extra pounds, mess, and chaos? I envy those who make the first year look so darn easy – it wasn’t for me as much as I enjoyed it and miss it.
My challenge. I compartmentalize beyond the keeping healthy separation between work and family. I have two computers with two different operating systems, two inboxes, two calendars, two very demanding aspects of my life which translated to two very long to-do lists and one very stressed out Catherine. I craved order, simplicity, organization, clarity  but instead I fell into the abyss of too much to do and too little time. When people asked me how I was doing my standard responses were:
a. Hanging in there! …..failing to add on “and just barely as the dental floss gives way through my sweaty fingers!”
b. Living the dream! …..which never really stated a wonderful dream or a nightmare or something in between where I could never get where I was trying to go because people keep getting in my way and trying to get me to do something else
c. Taking it one day at a time! ……silently muttering “because thinking beyond today makes me cry myself to sleep at night!”
d. Feeling very blessed!…….while thinking “because so far no one has died today and I celebrate all the little things…..but things might change when I get lost in the laundry room”
You get the drift!
So in the last month I have started my personal project….my quest…..my goal………..Extreme Personal Improvement – Catherine Edition! Homes have Ty Pennington – I am armed with a great mentor, some old tricks I need to dust off and use again, and some new ideas for long term gains. And I may just call it Catherine Edition but it is actually the Krause Bears edition – and my cubs seem to be game!
My friends – my virtual therapists – I invite you along for the ride now as my virtual accountability partners. Just typing things and posting them into cyberspace often clears up mental clutter. So you are another tool in my toolbox 🙂 For those of you thinking UGH – just give me Peter updates – I will be sure to be very clear in my blog title (maybe even venture to use pages?) so that you can come and go as you wish. But know that you are welcome along the journey any time you wish – and invite your friends to join – and I am always up for good tips!
xoxoxo
Catherine

Peter Update: June 7th, 2012

I got your back big bro!

I write this as I am on my way home from southern California from a business trip…..just a couple of weeks ago going through Denver, at the same time, is when Peter suddenly tanked. I’m nervous! Peter had labs yesterday and his ANC was 1400. Today he went in for his Vincristine infusion. Admittedly I am slightly on edge but I know too that Peter seems to take the 7-10 days to let the chemo float around in his system before bouncing back or tanking – so we will be watching him closely.

As usual, John took Peter in for his appointment. Yesterday was the day that Peter’s case was presented to the leukemia conference in Denver. I’ve been anxiously waiting for the outcome of this hoping that we can make some tweaks to protocol to help Peter stay healthy. I really felt like we were all in agreement that some customization was needed for Peter. The outcome – as I understand so far – is that the goal is to get Peter back to 100% of chemo dosages per the protocol with no adjustments. The concession is that the period to increase from the 50% we are at now, to the 100% will be “taken slowly” and that Peter will be “watched closely”.  I snuck out of the meeting I was in to talk to John and get this information. Honestly I wasn’t sure if to scream, cry, or do both! John stated that he argued our case as best he could knowing my concerns and what my reaction would be to this – but the response was that based on the ten minute discussion on Peter, the opinion was that the risk of relapse was greater than the risk of infection. Can I say I feel like crying just typing this? Peter has spent so many times in the hospital because of infections – most of which were out of our control. However, as they pointed out to John – if Peter relapsed and in conjunction with his Down syndrome, his chance of survival would be small.  Given that the raw emotion of having my child on a ventilator for weeks and being told he would likely not make it – I continue to fear death by infection more than death my leukemia for Peter.

Right now I feel trapped! My mind is spinning. We’ve tried hard to keep Peter healthy but he can look great on the outside and have no white blood cells on the inside and in essence no ability to fight off anything that comes his way. We are a family of 8. We have made changes to reduce our chances of infections but short of putting a bubble over our house and never letting anyone in or out or putting Peter in cave to live alone – we can’t avoid everything. So many times we heard to take precautions, but keep life as normal as possible – that is what I feel we’ve done. Peter needs socialization, physical activities, education, adventure – as do all my kids!  You should see how much he enjoying the swimming pool –  he might just have a personal goal to become a prune! We are 18 months into treatment. We have 18 more months to go. Sitting here today they feel like an eternity. I believe it is by the grace of God that Peter has made it this far – and at this point I am feeling it will only be by the grace of God that he will make it another 18 months and beyond.

It is days like today that test my resolve. A few weeks ago I talked about practicing how to “navigate” life; about enjoying the present and filling life to the brim with scuffed pink party shoes like G. I have been taking the advice of my mentor to work on communication, priorities, lessening the guilt – in essence navigating! I talked to my mom and told her how I envisioned myself a little tug boat sailing the ocean. I can’t control the waves but I can navigate them with my little compass of what matters….also challenging myself to not be so focused on my destination that I am not enjoying today. I’ve been making changes at many levels so that I don’t just sink at the dock. Some have been easy, some have been emotional. All for the better. Early this week someone gave me such an incredible compliment that it brought tears to my eyes – she said I lived life powerfully and purposefully. I felt so unworthy of it – but I reminded me how I want to live! I did once, I lost my sense of direction, and I am working my way back there …..one step at a time and darn it feels good!

Calls like the one John and I had today challenge that darn good feeling. My mind shuts down, my emotions get high until I shut them off and go into “commando” mode to tackle the issue at hand as if it was the only issue in the world. Hmmm…clue as to why I lose direction?! So thank you all reading this for being my virtual therapists! Just working through my thoughts to type this has helped me get clarity. I accept that we have two different opinions – we have medical opinion based on many cases and we have parental opinion based on single experience over the last 5 years. Breadth of knowledge vs. depth of knowledge maybe?! This is personal only to the extent that I know we all have Peter’s best interest at heart and we have different fears and thoughts on what to do. It is time to take a few deep breathes, gather our thoughts and keep communicating.  Any pearls of wisdom are very much welcomed – so bring them on please!

We’ve all got your back Peter!

xoxo

Catherine