….from the blur of ordinary comes extraordinary….

Where did summer go? This was my first summer off since I was in school. Yeah, that was a long time ago! I know I felt so relaxed, I enjoyed the weather, I actually have tan lines (the best ones on my feet – but that counts!). I had big ideas – most seem to have fallen to the “One-Day-Some-Day” list. It really did feel like it slipped right by in a blur.

In that blur, some things stand out. Alexandra got her own place, and moved out, to get ready to tackle college again. Michael got his first job as a host, and looks so spiffy in all black with a fun tie. Jack wound down the intensity and just chilled out….he found a new appreciation for Latin, and went into this school year a different young man. Tommy has now read every Calvin and Hobbes book twelve times. Peter went to summer day camp – on his own – and loved it! Figuring out that certain things only happen on a given day of the week has been the impetus he needed to work on “days”. Going to the gym on Friday is anticipated with much joy, and has taught him that he can’t move the days of the week around no matter how hard he tries. Gretchen became a fish. While the other kiddos in her swim class refused to put their heads under water, G found pleasure in making it to the bottom of the pool and then slowly floating up. Yes, she looks like a corpse. And better yet, Peter does the same thing. I don’t know what people think when I am dazing at two face-down floating bodies in the little kids pool.

Life is more fun with goggles?!

Life is more fun with goggles?!

Yep.....into 1ft 6in of water.....stressed me out every time but the "don't jump" wasn't getting through.....

Yep…..into 1ft 6in of water…..stressed me out every time but the “don’t jump” wasn’t getting through…..

So handsome!

So handsome!

Many of the extraordinary activities never came to fruition, but the sum of the ordinary events made this summer extraordinary. And I experienced the season I’ve heard of so often, but didn’t get to witness in my basement office with no windows. Yes, Catherine, there is a summer!

Relaxing in Pagosa Springs.

Relaxing in Pagosa Springs.

Enjoying shakes and malts in Pagosa Springs CO

Enjoying shakes and malts in Pagosa Springs CO

....getting in more s'mores during the last days of summer....

….getting in more s’mores during the last days of summer….

The school year is bringing on a new normal for us. Alexandra is started back up in college, with a long term plan to become a nurse. She is thinking seriously about pediatric oncology, and I think she would be an amazing gift to the kids and families that must go down that path. We know from experience that nurses are THE BOMB – they make the unbearable bearable, and are capable of so much compassion. They inspire me!

....not only did she get her own place, but she went dark with the do too!

….not only did she get her own place, but she went dark with the do too!

Michael is now a Senior in HS. He has received one college offer, and we are expecting two more in the upcoming weeks. No top choice for schools yet, so much more to come there. Jack is a 7th grader now, and gets driven to school by his big brother. May not be a big deal to him, but it is a monumental event in my book. Hmmm….maybe Michael needs to stay in town so he can continue his duty to family and school?!

Peter started 2nd grade. His enthusiasm for school is still strong, and he can run down the driveway shouting “da bus, da bus” in a way that invokes confusing flash backs to “Fantasy Island”. Bless you, young folks, that have no clue what I am referencing. My traditionally angelic child, has let his little devil come out at school a few times. That sweet spot under the play set that no normal sized adult can reach, is a great place to sit and laugh at the world. Lucky for Peter, he has some peers in his 2nd grade class that have his back, and coaxed him out before there was big trouble. He is still really struggling with handwriting, and he is being given opportunity to practice some keyboarding, as we may need to move in that direction sooner rather than later. Peter has however mastered lowering people’s expectations of him. Sigh. He can count well past 10 when necessary, but has figured out that if he counts 1-2-3-5, you will stop and reinforce 1 through 5 over and over again to ensure he nails down that 4. See what he just did? Low cognitive skills…..I think NOT!

Life is better with the cream on top!

Life is better with the cream on top!

The biggest change has been for Tommy and Gretchen, that are homeschooling this year. Monday – Thursday they are with me at home (or where ever we decide to take the class that day). On Fridays they participate in a STEM program offered by our school district. We are still finding our rhythm, but so far I’m loving it! Tommy struggled with losing the opportunity to be with his friends on a daily basis, but has found the upsides of homeschooling. He must whisper them to Jack. First Jack said, “You need to stop doing so many fun things with Tommy, it is hard for those of us that have to go to school.” Followed by, “I’ve been thinking, I believe it would be better for me if you homeschooled me too.” Tommy’s Math was beyond the curriculum we have, so we have moved him up a grade level there. However, his punctuation needs working and I am so not the right person – I enjoy using punctuation for my own selfish purpose void of rules! Gretchen is working on reading and telling time, but her favorite event is the weekly playdate she has had with our neighbor’s grandson. She loves the crafts! Clearly I need to spend more time on Pinterest……. it intimidates the heck out of me!

Learning at home....and loving it!

Learning at home….and loving it!

Teaching PSL time!

Teaching PSL time!

Fall is in the air. My 5:30am emergency run to the grocery store last week actually felt more like winter! I have a love-hate relationship with this time of the year. I love the crisp mornings and colorful leaves. I love snuggling up in the evening and feeling the end of each day. However, every year for as many years back that I can remember, something big and hard, has happened during this time of the year. Peter’s multiple diagnosis/illnesses and his time on the ventilator, my mom’s death, my father-in-laws death, and so much more. I am at the time of the year when I brace myself for the other shoe to drop. And I pray there are no more shoes to drop!

Someone asked me recently about how I got through all that we have with Peter. I think I disappointed. The truth is, there is nothing amazing that I’ve got figured out and my prayer life leaves a lot to be desired. I am far from the poster child of any way to handle challenges. But what I did share is that from the moment of Peter’s pre-natal diagnosis, I have held on to the belief that we all have a God given purpose, a higher purpose. That purpose may be met in a day, a week, a year, or a century – that is not up to me to understand or decide. Believing in that purpose, that greater good, is what makes the journey possible. I have no magical answer, but what I did add was that every day I work to make sure my faith is bigger than my fear. Just that simple, I keep my faith bigger than my fear. I think “believe the purpose is bigger than the shoe” would have made me sound crazier than I already sound!

So here we are, on the cusp of a new season. Time to look back and reflect. Our ordinary lives have given us many extraordinary memories. The truth is that we have much to be thankful for as a family. We have SO much to be thankful for as a family! It is so easy to get wrapped up in the day to day, to believe we do not have enough. Or, more likely, to believe that we are not enough. The endless spiral that so easily distracts us from our reality. Regardless of the challenges that lay before us, the truth is that we have so much more than we ever need. Knowing that, may we all reflect on the dignity of every human life. May we find ways to protect and support those robbed of their human dignity in any and all stages of life. May we put aside color, religion, gender, political affiliation, and all other ways of sub-segmenting humanity, and truly respect all lives. All lives matter.

Happy Pumpkin Spice Latte season to you all!

xoxo
Catherine

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so grateful for so much!

It has been two months since I shut off my work computer for the last time. Gosh that day was hard! I actually cried in ways I didn’t think were possible. I wasn’t prepared for how hard it would be to walk away from a career I started way back in 1996 – a career that has provided for my family in so many ways. Personally there were so many experiences, friendships, challenges, rewards and everything in between. Work really was the constant in my life through all the ups and downs that we’ve weathered over the years.

...life feels double good! ...

…life feels double good! …

This has been my first summer off with the kids…..ever! And, I love it! I have not felt this relaxed in as long as I can remember. It is the first time I haven’t felt torn in too many directions, trying so hard to give everything my best yet feeling like I was falling short on all sides. I started off in the blaze of glory fitting in all the fun I could into a week – as if I thought the time was going to run out. End of June arrived, and I was tired! July has been much calmer, and realizing just how much joy we get from a morning at the library, an afternoon at the pool, a rainy day playing card games and board games, or those quiet moments when everyone is sucked in by the book they are reading. It really has been great!

Chilling out on a rainy day...

Chilling out on a rainy day…

A day at the ranch....love Rock Ledge Ranch!

A day at the ranch….love Rock Ledge Ranch!

It was all fun and games, until Gretchen beat them - again!

It was all fun and games, until Gretchen beat them – again!

National Geographic photographer in training!

National Geographic photographer in training!

Realizing now that I never hit POST on my May update with Peter…..I’ll just do a quick run down. Peter gave us a scare in May. After being healthy for so long, he woke up one morning struggling to breath. We rushed off to the ER, and after some back and forth with the doctors, the decision was made to admit him. While he is no longer on chemo, which works to his advantage, he has a history of going south fast when it comes to respiratory issues. Peter continued to deteriorate after admissions, and was really close to getting moved into the PICU. I admit, flashbacks to the months on the ventilator rushed into my mind. I didn’t realize just how raw my emotions were around that period of time. By the grace of God, Peter turned the corner and we were able to discharge just in time to celebrate his 8th birthday at home. In his short life he has spent months in the hospital, including several holidays, but has always pulled off having a birthday at home. He cut it way too close on this one!

A few days late - but celebrating his birthday with his 1st grade class! Happy 8th Birthday!

A few days late – but celebrating his birthday with his 1st grade class! Happy 8th Birthday!

Peter has participated in a day camp through our city this summer, and loved it! It was important to me to have him keep up the skill of a structured day, and functioning in a group of peers – not his siblings – to avoid some of the regression we’ve had in prior years. It was well worth it – Peter has had the time of his life! He has made new friends, gone to the wave pool every week, and field trips once a week. He has kept up the skill of working well in a school-like setting. Suffice to say, he beat the rest of us out when it comes to fun. Throw in that once he gets home he wants to play more, swim more, and have more fun – the kid is a 24/7 party!

Excited about summer camp!

Excited about summer camp!

Peter now has tutoring two days a week, for 1.5 hours each session. My heart sunk when it appeared he could academically do very little – so discouraging! However, I think his brilliance is just starting to emerge in those sessions. A matter of a new teacher and them getting to know each other. What Peter has shown so far – he is a good listener, he understands how to function in a class setting, he always uses his manners, he tries VERY HARD at all that is put in front of him while following all instructions, and he has an amazing attention span. Just a few years back, it seemed getting him to sit in a classroom chair for more than a couple of minutes was an impossibility. Now the teacher is reporting she almost has to insist for Peter to take breaks, but given the choice he would just work non-stop for the full session.   I take that and translate to adulthood – who would not want to hire a great looking kid with good manners, good listening skills, good focus and able to follow directions? We have academic skills to work on – but those soft skills are not easy to teach, and he is nailing them. Proud mama moment!

Life skills.....mastering grocery shopping. He did it all, including swiping my card, with very little guidance.....and when all done threw his arms up in the airs and triumphantly shouted "I DID IT!". Now I take him weekly for him to do a short trip with a list of four items. Practice, practice, practice!

Life skills…..mastering grocery shopping. He did it all, including swiping my card, with very little guidance…..and when all done threw his arms up in the airs and triumphantly shouted “I DID IT!”. Now I take him weekly for him to do a short trip with a list of four items. Practice, practice, practice!

Peter’s receptive language skills are strong, but the speech apraxia has made it so hard for him to communicate what he knows. He has the language and ability to express his basic needs, or interact with his siblings. But formulating a phrase or even being able to answer questions is such a challenge. Despite this, Peter has such a great attitude. I would be so frustrated to have thoughts and no way to express them, yet he smiles and perseveres on. The lack of speech makes it hard for him to make friends, but I am often overwhelmed by the kindness I see from his schoolmates. I think “Hi Peter!” may be the most used phrase at the school. This carries outside of school, as I have witnessed a line of girls form next to the little pool at our club, and the pretty little girls of all ages squeak out “Hi Peter!…..remember me?!” He still plays hard to get, so the squeaks get higher pitched until Peter returns with a “yes” and the girls smile big and giggle with excitement.

Peter is still struggling with writing. He likes to try to trace letters on the iPad with his finger, but anything with a writing instrument is a real challenge. This fine motor skill has always been a challenge, but I think too that he has sensory issues with his hands that have made it even harder. I don’t know if this is just part of his sensory processing disorder, or as a result of nerve damage from the chemo, or a combination of both. Since he started chemo, he is not able to get through the night without waking up and wanting to be cuddled/comforted. During this half awake/half asleep stage, he will often rub his hands on different surfaces as if seeking some input. When he finally does it long enough, he will fall into deep sleep again. Brushing, joint compressions, weighted blanket, and other techniques we’ve used have not yet got us to the point that he can sleep through the night. Which of course means John and I are not getting a solid night sleep either. John functions on little sleep much better than I do – and is good about trying to get Peter back into his bed. I admit, in my zombie like state, I hold him closely to me in bed and pray for the hand rubbing to stop so that we can both be in deep sleep.

Finger tracing is coming along.....writing with a pen - well, need more practice!

Finger tracing is coming along…..writing with a pen – well, need more practice!

Peter will be starting second grade in just a few weeks. And I know the highlight of his day will be running down to the bus every morning. Peter has switched up physical therapy a bit, and is now doing it in a gym like setting. He loves it! He has also shown that he has a great skill of running while kicking the ball in a soccer like way. He also has a killer left handed bat and great accuracy when batting a ball off a t-ball stand. So, I am thinking we know what sports to try this school year. Peter has also demonstrated a great ability to hold his breath and float in the pool – often inflicting instant fear in those around him – until he whips his head back up with a big smile. Yeah, not really planning on capitalizing on the “I fake a great corpse” skill, but it has helped with working on his swimming skills. All in due time!

...so excited to jump on the bus and head off to school!

…so excited to jump on the bus and head off to school!

Hanging at the pool....and scaring a few folks when he  decides to float like a corpse!

Hanging at the pool….and scaring a few folks when he decides to float like a corpse!

Of course, Peter is not our only child despite the thesis like updates I can write on his adventures!

Peter, Jack, Tommy, Alexandra, Michael, Gretchen....and almost all are smiling!

Peter, Jack, Tommy, Alexandra, Michael, Gretchen….and almost all are smiling!

So here you go –

Alexandra is moving out and into her own apartment next week. So excited for her! She worked a ton of hours during this year off, and will be starting college back up next month. Her goal is to get into nursing, and hopes to one day work in pediatric oncology. She also decided to make some other changes, and dyed her hair dark brown. Looks great on her – but she does stick out in family pictures! We are so excited what the future will bring to Alexandra as she leaves the nest.

Alexandra - rocking her dark do!

Alexandra – rocking her dark do!

Michael just got back from a mission trip, and is getting ready for his senior year of high school. Where did the time go? He is academically doing well, and hopes to go off to engineering school, where I know he will do great! Still much work to be done on the college search front….sigh! Michael also learned how hard it is to break into the job market as a high schooler – it is not the market it once was, as he competed against college kids and adults. He did get a job at a local Italian eatery, and plans to keep working through the school year. We are very proud of him!

First day on the new job - and looking good!

First day on the new job – and looking good!

Jack completed his first year at Thomas MacLaren with Michael. He picked up the cello easily, but would rather pretend Latin is not a subject he needs to participate in. He had one of the lead roles in his class play for Public Performance, and memorized some great poems which he delivered flawlessly with a British accent. He played two seasons of football, and is hoping to join the team for our home middle school within our district.  Jack dreams of being a computer and game designer/programmer, and given that he has taught himself basic programming, I think he will reach his dreams!

Tommy and Jack - the dynamic duo!

Tommy and Jack – the dynamic duo!

Tommy completed 4th grade at Corpus Christi. Academically he performed marvelously, but his highlight were the friends he enjoyed and their “club”….a very well formed, organized, and democratically governed club. Tommy played one season of soccer, and hopes to keep it up this next year. Tommy and Gretchen will be homeschooled next year, and then we will decide if he joins Jack at Thomas MacLaren or explore other options. I am very excited to have this time with them. Tommy continues in Scouting (although I admit I fell behind on activities), and he was awarded with Outstanding Scout of the Year award for his great attitude, hard work, and continued top sales in popcorn again. He really is gifted when it comes to door to door sales – I’m impressed! I am excited to have Tommy continue to grow and participate in what he enjoys most – contributing to our community in so many different ways.

Peter and Gretchen are so blessed to have each other.....one day she will appreciate all his hugs!

Peter and Gretchen are so blessed to have each other…..one day she will appreciate all his hugs!

Gretchen completed pre-school at Corpus Christi, where she loved her teachers and friends. She is a boisterous contributor to all activities, and learned much to prepare her for  kindergarten. She scored very well in standardized testing, and is excited to be homeschooled this next year. Sadly, after 15 years, we made the decision to leave the school. We have much history, wonderful memories, and great friendships formed at that school – but the administration’s mishandling of issues has lead us to no longer feel it is the best place for our children. It was a difficult decision, but one we feel very confident in. This summer Gretchen took swim lessons – and quickly became a little fish. We are hoping to pick up with more lessons during the school year, but she is begging to do ballet. Now, gymnastics lasted one session before she decided she was bored with it. Ice skating lasted one session before she decided she really didn’t like falling on ice. But, her great grandmother was a very talented ballet dancer (as my mother shared with me). The gene missed me, as my mom was encouraged by my ballet teacher to not waste her money on me (and I heard it….sniff sniff). But, little G may be the recipient of this gene and find her passion!

Gretchen - beach bum in Colorado!

Gretchen – beach bum in Colorado!

Last July, John re-entered the job market, and it has been an amazing year! He loves the company and his co-workers, and they clearly feel the same way about him. Doors continue to open, and he is excited to grow and advance. He also coached the St. Mary’s girls golf team again this spring – and once again had his top player make it to state championship.

John getting some golf in for Fathers Day!

John getting some golf in for Fathers Day!

Check out that ball! Clearly John's genetics at play!

Check out that ball! Clearly John’s genetics at play!

John has been working hard, but was able to get a movie night at the pool with us - and all the kids were so excited!

John has been working hard, but was able to get a movie night at the pool with us – and all the kids were so excited!

I am sure there is much more to share – but this update as reached the “Mama are you done?” stage and escalating emotions between the kids. It is sort of like when kids can ignore you until you are on the phone, then must talk to you. Or avoid you until you go to the bathroom, and then their finger tips and lips slip under the door as they insist there is a crisis that needs immediate attention. Or their fine tuned radar-like skills that sense when you’ve tried to enter stealth mode and tip toe off to another room just to read for a few minutes, and they intercept before you reach your destination. Yeah….like all those things.

...and I did get some adult time - good fun, great company, a little creativity and sipping wine....

…and I did get some adult time – good fun, great company, a little creativity and sipping wine….

So my last thing….and you knew this was coming…..in less than 5 short weeks, we will be attending our 9th Buddy Walk in honor of Peter. There is much more information on our page, so we invite you to visit our page and consider joining us as a walker, a virtual walker and/or a donor. Every dollar raised goes to support individuals with Down syndrome and their families in our community. From pre-natal diagnosis support through adulthood, so many families benefit from the services offered by the CSDSA – all of which is possible by the funds raised once a year through the Buddy Walk. We hope that you can join us!

Team Peter Bear – Buddy Walk 2015!

With much love and gratitude for all the support each one of you has given us on our rollercoaster of life!

What really matters - FAMILY!

What really matters – FAMILY!

xoxo

Catherine

In case the link didn’t work – please copy and paste this URL into your web browser.   http://csdsa.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=5010

 

Eeek…..so long?! Update and Invite!

Yikes – where did the time go?!

Quick update …..

Alexandra graduated from St. Mary’s High School in May. She is now working as an office assistant at NTSOC and will be heading off to Colorado State University in August. The plan is to do her undergraduate in Psychology with an emphasis in Brain, Mind, and Behavior – then moving into a Masters in Occupational Therapy. She hopes one day to work with kids like Peter – and I know she would be great at it!

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Michael completed his Confirmation and wrapped up Freshman year of HS, and was cleared for non-stressful exercise with his knee! Yay! So no sports, but much to his disdain he can now walk the dog again. We really are so fortunate that he is healing well although he still has residual issues with his thigh/hip. We hope they get better and he can pick up with sports in the Fall.

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Jack took silver in wrestling – yay! He wrapped up 4th grade with a 10th grade reading level….wow!……and will read about anything you put in front of him. He is enjoying his Kindle but can still be found with his nose in a good old paperback book. Given the relentless energy he has, it is great to see him chill with a book!

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Tommy’s enjoyed his First Holy Communion, but I think the highlight of his school year was scouting. He had so much fun! His enthusiasm was clear when he pounded the pavement in cold weather collecting food for the local food bank. He collected almost 500 lbs!! Way to go little dude!!

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Peter wrapped up kindergarten and loved it! He will be repeating it again next year in an all day setting as he really needs to catch up academically. He did three weeks of summer school of which i think the highlight was riding the bus. He was so excited! His energy continues to increase post-chemo but he likes to freak me out every once in a while telling me his hip, toes or fingers hurt. Praying he continues in remission! He still goes in once a month for labs given that he is at the start of the new shorter protocol and we need to make sure he stays healthy. This spring he started swim lessons which he loved – but still will opt to play in the little kids pool this summer!

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And last but not least is Gretchen – she is so precocious! She has discovered crayons but likes to color everything the same color and the lines are a lose guideline to which she will not be constrained. Surrounded by brothers and boys in the neighborhood – she is often the little girl in a dress and pretty shoes trying to scale a tree or play set. Her favorite pass time is bossing her brothers around. Not sure where she gets that from!

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On the family side – my father arrived in mid-May. He is starting to make Colorado Springs is part time home and we are loving having him here. It is such a treat!! The kids are all over him and he has been a huge help with our crazy schedules. Now have to work on him to be here longer and longer!

Guess what time it is?! Buddy Walk time!! We are so excited to have Peter do this walk healthy this year – and hope to see him running across the line in his own unique running style (makes us smile it is so cute!). For a second year UnitedHealthcare is sponsoring the Buddy Walk and our Team Peter Bear. YAY! So we invite you to please consider walking and/or sponsoring our team this year. As you all know the Colorado Springs Down Syndrome Association is near and dear to my heart – and we try every year to raise more and more to support such a wonderful organization that offers so much to families in our community and the surrounding community.  CLICK HERE to get to our team page or copy and paste the below link……We hope to see you there!!

http://buddywalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1073387&supid=387665407

xoxo
Catherine

There you are……here we are!

“There you are!”……which coming from Peter more often sounds like “Tha ya-arrrrr” or “Thar you is” and is heard often around our house as he goes off in search of the next person to sit with, play with, snuggle with, or just give a hug followed by a kiss and a pat of the back. Then the pitter patter of his footsteps as he heads off to find the next target of his attention.  Hey! Here we are!! All 8 of us Krause bears are here riding the roller coaster of life. This week alone can be measured in numbers. Twelve inches of hair, two sick adults, four golf practices, three sick kids, two wrestling practices, one pack meeting, two wrestling tournaments, one ER visit and a surgery. Aside from our normal school, work, therapy and doctor appointments, this week was a little extra chaotic.
I feel neglectful not even posting on FaceBook for World Down Syndrome Day on March 21st – a day which around the world celebration, recognition and awareness is brought to Down syndrome. Why 3/21? Because individuals with Down syndrome have 3 of the 21st chromosome. On one hand I think we celebrate, recognize and bring awareness every day – every where that Peter goes is an opportunity to do each. We often find ourselves discussing Down syndrome even when Peter is not around. So in some ways it is 3/21 every day. But on the other hand, because we celebrate all of our children every day (and that can be hard some times!), our minds are often on the challenges of life. I can guarantee that I have spent a heck of a lot more time thinking about cancer and other medical challenges, than I have about Down syndrome. When I see Peter …..I see Peter. And ultimately that is what we dream of for him. To be celebrated and recognized for the individual that he is every day. Just last week I was at Peter’s school for a musical performance. Which in Kindergarten was 3 songs, performed in under 15 minutes, with very loud music and lyrics on a tape player. The kids moved around and danced, some knew the words, and many more adults with big smiles taking picture, after picture, after picture. On that day Peter was so happy I had come to school. As he marched down the hall from his class to the music room, a pretty girl with dark hair was escorting him. He excitedly waved and called out my name. In the music room the girl stood behind him. Giving him a little direction, she spent a lot more time asking to hug him or asking him for a hug. All of which Peter did with a big smile. After the show, the kids marched back down to class. I waited in the hall to take Peter home. A lady working for the school district stopped on her way out to ask me if I was Peter’s mom. She went on to tell me about how she had asked the tall, pretty girl with dark hair to “give Peter some space” after observing her directing Peter around the class. The girl insisted she needed not to stop, and after a short discussion declared that she need not stop directing Peter because “when I grow up, I am going to marry Peter!” The lady smiled at she told me this, and we commented on training their future husbands at a young age. After she walked away I sat in the quiet of the hall and was filled with gratitude. This young girl made my dreams come true! Why? Because as a 6 year old she celebrates and recognizes Peter for Peter. She doesn’t see a classmate with disabilities that she needs to push around. She sees a handsome young boy with a big smile who will so willingly hug her and hold her hand when she needs it. She feels recognized and celebrated, and in that does the same for Peter. That is what I hope for every day for all individuals regardless of ability!
Peter showing us how he uses the class notebook during conferences (and yes - that is G next to him taking advantage of technology time!)

Peter showing us how he uses the class notebook during conferences (and yes – that is G next to him taking advantage of technology time!)

Peter has taken off since stopping chemo! He is not yet sleeping consistently but there has been some improvement. More recently he seems to be enjoying food again – maybe he no longer has the bad flavor in his mouth. He is vocalizing a lot more – which we hope will lead to some strides in his communication. His energy level is through the roof. And amazingly he is doing things like bending both knees when reaching down to pick something up – finally! He is willing to walk up and down the stairs as opposed to crawling up and down. It is exciting to think of where we go from here! We have had one hospitalization and one ER visit since he stopped – the ER visit was this last week because he was throwing up something awful. He is on the mend now. He had an oncology appointment this week and they let us know that within the next two to three weeks they would like to remove the port. Wow! We are really there!!
In the spirit of reaching the light at the end of the tunnel with Peter’s treatment – to honor his battle won, and the cancer battle my mother lost – today I chopped off twelve inches of hair which I will be donating to have made into wigs for children who have lost their hair due to cancer or other serious medical challenges. In some ways it seems so minor. While Peter never cared that he had no hair, I know for some children that is so isolating. My mother never got far enough in her battle against the lung cancer to lose her hair, but we know she thought about it. As we went through her closets at home, we found a small plastic bag that contained some hair she had cut and put aside. She wanted my father to use that to order her a wig that matched her hair color. It is hard supporting a family member or friend through cancer – there is often so little we can do – but I hope that a wig can lift some spirits to whomever receives it. Twelve more inches and another donation!
12 inches to a good cause!

12 inches to a good cause!

I get many messages asking me how Michael is doing – and I am happy to report he is doing amazingly well! The surgery was a success – with two large pieces of bone reattached to the bottom of his femur. The days following the surgery were painful for Michael, and heart breaking for those of us who could not take the pain away. At a week he was cleared to go back to school, and was thrilled to do so. I thought my nerves were shot going through this, but I was wrong. How do I know that? My whole body tenses up when I see Michael whipping around the corner on his crutches, and racing down the straight stretch in long fast strides that go from zero to sixty in about 2.8 seconds! And when that is not enough, he will put the crutches aside and get around with a combination of twisting on his good leg and hopping on it. He is not allowed to put any weight on the injured leg and I consider it nothing short of miraculous that he has not fallen down. Even his physical therapist was scared watching Michael on the move! PT has been going well – and Michael proudly wears the badge of honor of being the only teenage boy client of this therapist who did not cry his way through the first several sessions of therapy. He white knuckled it, but grinned through it. He is looking forward to April 10th when he should be able to put 25% weight on it. Honestly not sure what that does for him – but heck, he is excited so I am excited!
Michael at his first physical therapy appointment.

Michael at his first physical therapy appointment.

So just to round up this update with all our other weekly metrics – John and I got a mild version of what Peter had but it was rough. Alexandra, Michael and Gretchen were also sick – G is suffering with allergies now too. As only three year olds can do, we have a vocabulary full of Gretchen-isms which include “My nose! My nose!! My nose is racing again!!”……see, her nose doesn’t run, it races! And when her nose is stuffy she doesn’t like the poo-taste on her poo-brush. Try to keep a straight face every morning and night when she says poo-taste instead of toothpaste!  John and Alexandra have golf practice four times a week leading into the upcoming tournaments through the spring. Jack’s wrestling season has started – two practices and two matches a week. Tommy excitedly had a cub scout pack meeting this week where he received rank. He also proudly carried the flag. His goal is to become Eagle Scout one day – so glad he found something that is all him! John did have surgery earlier this week. It was for an injury he had seen last year, but very recently had become extremely painful. The surgery was outpatient, and he is on the mend too.
Tommy as Cub Scout color guard.....and so excited!

Tommy as Cub Scout color guard…..and so excited!

We have had our ups and downs – but wrapping up a calmer weekend. I am headed to California in the morning – weather willing – and looking forward to Easter with the family next weekend. We have much to be thankful for!!
Wishing you and yours good health, and a happy Easter season!
xoxo
Catherine

Just a quick update….

Starting off with quick and easy…..

a) Peter is doing great! He discharged from the hospital and has been a bag of energy ever since. We have a week or two before we start all the lung/heart follow up but honestly I can’t think of the last time he has been this energetic. Not having to fast 4 hours every night for chemo has done wonders for his mood. He is just so happy!! Both John and I have noticed such a difference already. And in honor of the memory (and the fact that John laughs that I share the news with anyone who listens to me), Peter said POTATO yesterday! Praying it just continues to get better from here.

b) Jack came home from school puking yesterday. He was proud of himself for successfully aiming and letting it all land on the pew during Mass. Something like “I got none on the carpet!”. He was sick for a few hours after coming home and by night looked his normal colorful self. We kept him fasting and did that BRAT diet today. He is all mended and probably got 20 hours of reading under his belt.

Michael during pre-op when his spirits were still high. Look forward to seeing him smile again...

Michael during pre-op when his spirits were still high. Look forward to seeing him smile again…

Now comes the hard. Michael. Oh goodness!! Yesterday morning we got up early and drove carefully on icy roads to get to the hospital. Suffice to say we got there way early. We were checked in by 8am and pre-op started. He was in such good spirits albeit a tad nervous. We joked about the fact that his leg got shaved and he had to wear hose on the other. After meeting with the anesthesiologist I was ushered out. I was in the waiting room and about 2 or so hours later the doctor came out to tell me how it went. In the up side he was able to reattach the bone fragments…..yes! fragmentS. The MRI showed one large piece and a small one they assumed they could just remove. Turned out there were two large …..or has he said “one big, and one huge” pieces. It was like show and tell when he pulled out the photos of the inside of Michael’s knee. It was alarming to see that basically the whole bottom end of the femur was ripped off. Then he showed me how he was able to put in place the two large pieces and where all the pins were to try and hold it in place. There is some ligament damage, but that should heal. It was the bone he was most concerned about. He felt that the surgery went well and told me I would go back in a bit to see Michael.

About 20 minutes passed and I was ushered back. Michael was having a bit of a hard time coming out of the sedation. Then he started shaking really hard, almost convulsions, as the anesthesia wore off. He was pale, weak and obviously in pain. After getting him dressed it was time to get him home. We wheeled him down to the car and put him in the back seat. It is almost a straight line from the hospital to our house. Michael was in the back completely tense holding his leg in clear pain. We pulled into the drive way and John came out to help me get Michael out of the car. That is when my stoic boy finally cracked. Tears running down his face he said he was in so much pain he would rather stay in the car and have someone shoot him. Just the thought of having to move an inch was too much as he shuddered in pain.

It took a bit, we did get him out of the car, upstairs and into bed. With the compressor attached to both legs and running 24/7, we were assured he would likely sleep most of the day. He could not. He was in so much pain he was like a giant knot. His nerve had been tapped prior to surgery. We were told it would be about 16-24 hours before the feeling came back. Nope! As the feeling came back in the nerve the pain got worse. We are on a steady stream of one or more meds every 2 hours which meant setting the alarm and getting up to keep him on schedule. By this morning he was in less discomfort and was able to rest most of the day although not comfortably. The compressor is still going 24/7 and he has drained quite a bit of fluid from his knee which we need to manage.

So where do we go from here? Tomorrow I get to remove the drain tube from his knee. He must continue to keep the compressor going and on top of all his meds. Saturday, if all goes well, we get to try and shower with the leg wrapped and standing on one leg (i think we are going to try a chair in the shower). It is imperative that he put no pressure on his leg at all or the bone fragments could detach and make the situation even worse. Tuesday we go back to the doctor and start scheduling PT if he clears for it. Then we have three or so months of physical therapy slowly adding mobility and weight bearing to the left leg. He will be on crutches through the school year. We hope he can go back to school next week but there are things we need to work through still.

I so appreciate all the prayers, thoughts and encouragement. It has been a challenging week and we hope things will get better! All who have read this blog for time know that Michael is the rock I lean on – and now it is time for us to all be rocks for him as the slow road of recovery starts.

Tomorrow Alexandra and I head up to CSU for admitted student visit. Taking steps towards picking from her schools and getting ready for college in the Fall. They really do grow up so fast! The next phase of her life and our lives. So many mixed emotions!!

xoxo
Catherine

The good, the not so good, and the in between.

Michael enjoying some "quiet time" during MRI of his knee.

Michael enjoying some “quiet time” during MRI of his knee.

The good news – Peter came home today! He is tolerating being on room air during the day. His ANC was up to 500. Still short of where he should be, but at least going in the right direction. The Peds ward was packed, so hoping having him home will be better as I always fear picking up an illness there…..flu, RSV and all the other junk going around. We were blessed to have really good care by kind staff that know him! He is full of energy which is always a good sign! He is in a great mood which is always a good indicator too! His special ed teacher just stopped by, brining Peter a bunch of “get well cards” from his classmates and a Dora book which I think he will never let go. So special!!

The bad news – Michael’s knee is worse than we thought. We had the MRI this morning, and told we would get the results tonight or in the morning. We hadn’t left the building when we were called back in. He has a lot of fluid in the knee – but the decision was made to not drain it yet and risk introducing something before the full treatment plan is in place. In addition to the dislocated knee cap (which is now as much in place as possible with all the fluid), he has a torn MCL and damage to other ligaments. The one in the back of the knee is sagging – still need to determine if that is additional damage or as a result of all the fluid there. What makes the situation more complex is that he has bone fracture too. I had understood that he may have some fracture pieces coming off the knee cap, but it was actually the end of the leg bone coming down into the knee (femur). There are at least two pieces – one of which is fairly large and pulled off the cartilage with it. The fragment is not in a good place (not sure there is a good place!). The growth plates looked ok, but more analysis from the radiologist was needed. So in a nutshell, on a very fast review, looked bad! We have a 7:30am appointment with a sports medicine surgeon, and if all goes well he should have surgery tomorrow or no later than Wednesday. The doctor we saw today felt very strongly about have a sports medicine doctor manage this, and that it needed to be done rapidly given the amount of damage she could see at quick glance. So, more to come tomorrow.

The in between is that Peter’s pulmonary pressure are much higher than the last time he had an echo. This could be as a result of being sick, or it could be that there has been a decline in his heart/lung function. They are not so high that immediate action is required – but enough that it won’t just be written off as “he was sick but should be fine”. He horribly failed his sleep study a few weeks ago – and was supposed to do it again this week. We have been asked to wait a couple of weeks to make sure he is over this episode. Then once the sleep study is completed, we need to re-do the echo to see if the pressures have improved at all. Often we talk about cancer being the elephant in the room that needs to be kept away, admittedly for me the elephant in the room is his pulmonary hypertension. While up until now he has been reactive, and responded to treatment, that can change. While it feels like we have “bigger” challenges with the leukemia, I don’t feel like we can take our eyes off the pulmonary hypertension. Pray he continues to respond to treatment as needed!

Anyway …..so there is our update in the next chapter of funding the healthcare system! We expect Peter to be home tomorrow, but hope he will return to school on Wednesday. Praying Michael’s appointment goes well and that his knee can be repaired before more damage occurs.

Thank you to all for you words of encouragement! Now I need to go back to finding a delivery liquor store, and enjoy a relaxing glass of wine 🙂

xoxo
Catherine

…and prayers get answered!

.... loving on Mr. Bear.....

…. loving on Mr. Bear…..

Sometimes we take answers to our prayers, and those much needed “breaks” in any way they come. I had tried the hospital to get an appt for Michael with no avail. But, Peter’s oncologist made a call and pulled in some favors – getting Michael an 8:30am appointment tomorrow with the top pediatric orthopedic doc. YAY!! (THANK YOU THANK YOU THANK YOU LISA!!) I can not express just what a relief that is! Michael finally took the immobilizer off today to give himself a bit of a bath (hey – that is another answered prayer!) and said he was grossed out by how his knee looked. So another blessing – thank you for the pain meds that are keeping him comfortable albeit very bored! Will update tomorrow.

Mr. Peter Bear had ups and downs. His fever broke last night about 11:00pm and he slept pretty good through the night. He did de-saturate causing his oxygen needs to increase. He didn’t want to eat or drink for John, and as the morning progressed his oxygen needs declined. I spent the day with him and just got home. He was still on oxygen during the day – but by mid afternoon his temperature started to climb all over again. So – the 24 hour clock of no-fever-so-that-he-can-come-home was re-set. Sigh! He was also retaining fluid which led to crackly lungs. A little diuretic and the flood gates opened…..and opened…..and opened. On the upside he drank decently for me and ate a ton of pasta alfredo! He actually wanted to watch Cars too, which gave Clifford a much needed rest. By early evening I was getting my work out of chasing flying toy car and stuffed bear. All good signs! I think he will sleep well tonight!

More blood was taken to be cultured, and he continues on all his meds plus IV. Really hoping this was just a bump in the road and that he will be home soon. Will be sure to update again tomorrow night with news on both boys.

Much to be thankful for!

xoxo
Catherine

Tackled at the one yard line…..

John described it better……but here is my version of it. Peter has been out on the football field, play after play, never passed the ball and able to make a great break. Finally Wednesday, with the news of no more chemo, he has the ball and is racing down the sidelines towards the end zone! The crowd – all of us – cheering him on. We are on our feet chanting his name! Sure he has made it to end we all celebrate. But, as sometimes happens in life, he was tackled at the one yard line, just short of the end zone.

The last couple of days Peter was a bit off. We were hoping not getting chemo, he could fight off what ever little bug may be around. Alas, he was unable. We kept him home yesterday and by this morning he was not feeling any better. I took him to the ER, and five hours later we were admitted to Peds. In looking for something to be thankful for – despite our many stays in peds, this is the first time we got the primo room with perfect views of Pikes Peak, just in time to watch the storm/blizzard fly in! As the day progressed, so did Peter’s temp increase. He is hovering around 102. He did eat dinner which was some improvement, but we believe the thrush in his mouth is also down his throat as he is having a hard time swallowing and will often drool until he has to swallow and the starts crying. His labs showed a very low white blood cell count contributing to an ANC of approx 270…………..way low! I am now home for the night, and will head back tomorrow. John is with him. At this point best case scenario is he can come home Monday if he cultures nothing for 48 hours, is fever free for 24 and his ANC is on the upwards trend. We shall see.

photo

Now, the kicker here is that Michael was tackled several yards back. On a field trip near Boulder yesterday with his school, someone ran into Michael knocking him over. He fell – legs twisting in opposite directions. He dislocated his knee cap, damaged a ligament and is collecting fluid in the knee. He was seen at a local ER in that area who instructed us that he needs an MRI and will require surgery as soon as possible to repair the knee. The ride home during rush hour was bad, and then we hitting ice. Took over an hour to go the last 20 miles during which time all the pain meds were more than worn off. Gratefully he made it through the night and his pain is being managed. Unfortunately we have had zero luck getting in contact with the local orthopedic surgeons so nothing is yet scheduled. Very frustrated! As was the ER doc who was amazed at the lack of responsiveness of the Colorado Springs docs. I won’t go into the details – but really hoping we get a hold of someone soon so that his situation is not made worse waiting too long. Will start my call campaign again in the morning. As I have shared many times, Michael is my rock who keeps this family going when Peter is in the hospital – it is hard to see him in pain, and even harder when I know I must split my time between caring for him and caring for Peter – and of course make sure everyone else doesn’t get lost in the chaos.

Now, I will admit – tonight is one of those nights were I throw my head up towards heaven and shout out “CAN WE PLEASE BE CUT A BREAK??!!”. I know I have much to be grateful for in my life, and probably too much I take for granted…..so please don’t assume i am in the fits of some melt down here …….I just could really use a break. How about we just stop letting the world turn for a day or two, and all catch up on some much needed sleep!

Will try to update tomorrow night. Thank you for all your thoughts, encouragement, prayers and positive energy!

xoxo
Catherine