There you are……here we are!

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“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….

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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.

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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!

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.... 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…..

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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

The day I thought would never come…..

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John just got home from a coaches meeting. He sat me down on the couch and said “I have something to tell you”….followed by silence.

My heart stopped beating.

“We got a call today from Peter’s oncologist office”. I started to cry.

He added “After talking to the experts at Children’s Hospital….and they have decided that Peter needs no more chemo!”.

At this point I started shaking uncontrollably! I had a count down going to Dec 27th which was supposed to be end of treatment.

We are done!!

I know there will be appointments, follow up, checks up, etc for a while……but I have this overwhelming feeling that Peter has been given his life back. He can start a chemo free life! A life of learning, playing, and loving – without the yucky feelings of chemo clouding him.

There are no words to truly capture how blessed and grateful I feel right now. So I am just going to wrap this up with a YA-HOOOOO!!!

Image

…..this is Peter when he started treatment back in October 2010……

xoxo
Catherine

Finally coming out of a blogging dry spell!

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Where to even start?! I have been “gone” for so long that I don’t know if to recap or start fresh or somewhere in between. What was normally so therapeutic for me – keeping up the blog – just felt suffocating in the last several months. In all honesty, my brain has been mush…..on second thought, less mush and more like a giant tossed salad. So many shreds of thoughts, but seemingly incapable of getting a complete idea put together.

My last entry was in October, when we found out my mother had been diagnosed with cancer. Shortly after that I went to Peru where I spent about a ten days with my family. My mother, father, brother, and my mother’s two sisters. When I arrived my mother was in the hospital and not doing well. It was a mixture of sedation, feeling overwhelmed, and a burning desire to just get back home. After a few days, she was able to come home, and receive palliative care there. With 24/7 support, my mom rapidly adjusted to being back home. Despite the oxygen, nasal feeding tube and endless steps to treatment – she was just so relieved to be in her comfort zone. We took turns riding with her to the daily radiation therapy sessions. On the surface we were a family enjoying time together – good laughs, a few games and a movie here and there. Underneath the currents of our emotions ran strong and deep. It was not how we had expected to be together again.

Mummy

Mummy

Less than two months from diagnosis, my mom took her final breathes at home with my father by her side. Their relationship strengthened further by this challenge – we know she left us just as she would have liked. Within a day I was in Lima, and Roger the following day. It was a lot of running around taking care of things – minutes and hours filled by a busy state that suppressed the rush of emotions. My mother’s funeral was beautiful! The church was packed with folks standing on the sides and in the back. At our request people came dressed in bright colors. My mother wanted to be celebrated, not mourned, and that is what she had…..I just pray that as she went up to heaven she was able to see how the colors filling the pews resembled the English garden we wanted her to experience. There was so much love, so much support, so much celebrating of who she was at each stage of her life.

My father came back to the US with me. And in true Colorado form, we had truly frigid temperatures for his stay. Did I mention he HATES the cold? I know where I get it from! And I doubt he honestly believes me when I tell him we have been in the 50’s, 60’s and even a few 70’s since he left! Despite the cold, the warmth of being with family helped us all!

I will be honest – I have not yet really fully grieved. I know I need to, but it is a little bit out and a lot bottled up in the same place as everything else that has accumulated over the years. Peter’s health challenges from the moment he was born, the diagnosis of leukemia, the nine week hospital stay with many on a ventilator, all the times we have been told “he may not make it through”. Every day of the six plus months we have spent in the hospital over the last five years. Tack on my own self induced stress and that which normally comes in marriage and life…..my “bottle” is very full! At times I yearn for that ability to just sit down and let it all come out…..but you know how that goes in my home? Probably not much different than any other home full of kids! I think everyone is covered off on…..I sneak off to the bathroom. Quietly close the door hoping no one will notice I snuck off. Yet, I must have gone right out of the radar zone, because all hell breaks lose! A poke, a hit, a paused video game, empty glass of milk, lost book, homework drama, chore avoidance, wrong words ushered followed by “MAMA!”. The mounting chaos can be heard climbing the stairs behind me. Peter’s “Mama, mama, mama” and pounding on the bathroom door. Gretchen’s “MAAAAAMAAAAAA!!” and a hormonal unleash only a three year old girl girl can let out that rivals a teenage girl! Keep in mind there are four more coming up the stairs behind her …..so you get the picture! I know one day I will miss the chaos – but right now I miss silence, just for a day, a silence where maybe those shreds of thoughts can come together and form an idea!

So what else has happened at the Krause house? Well…..Alexandra turned 18 and has been accepted to her top three college choices. We head out next week for tours of two of them, and an interview for a full scholarship to one. Fingers crossed!! Michael turned 15, and finally got his birthday party last night. Can you still call it that when they are sweaty stinky teenage boys cheering on XBox games as if it were an olympic sport? One laser tag, bowling, pizza, cake, video games, movie and sleep over later…..I am back down to 6 kids, and not the mother of 15! Jack is anxiously waiting the start of wrestling and football, but in the mean time fills about every spare minute with a book. As a result he has tested at a 9th grade plus reading level at the tender age of 9 years. So proud! Tommy has determined he loves sushi based on samples at the grocery store. Waking me up in the middle of the night to ask if I will take him to see if they have more samples has crossed the line into serious obsessive behavior! He has proudly (and finally) began Cub Scouts. He has wanted this for years! Gretchen turned 3 on December 31st. Way late for a girl, but she has finally started potty training. She is further motivated by the fact that she is on the waiting list for gymnastics and needs to be potty trained. My kids tend to skip the terrible two’s and make up for it in the terrifically terrible threes – and she is exercising that will many days! Good thing she is so stinking cute!

Last but not least of course is Peter. He continues to love school!! He was hospitalized in December, and released just a couple of days before my mom passed. Thank you God! I could not have handled both at the same time!! The chemo is taking a toll on him – but we hold on to hope that, God willing, his final dosage will be December 27th of this year. Just the fact that it is this year is so exciting!! His speech is still delayed, but when you listen closely you can hear him working so hard at words His favorite phrase is “what’s that?” ….a sense of inquiry leads to a mind full of wonder! His school testing confirmed he is behind his typical (and healthy!) peers – but he scored “typical” for school community and coping skills. Celebrating! There alone he has beat a couple of his siblings who seem challenged in the school citizenship area. We plan on having him do full day Kindergarten next year, and optimistic that another year of the basics and being post chemo will help make up for lost time and better prepare him for 1st grade. Preparing for the summer, Peter starts swim lessons at the end of this month. He loves the pool! No doubt many entries still to come on all his accomplishments.

I thank all who have continued to keep us in thoughts and prayers despite being “off the world wide web grid”. Praying 2013 will be peaceful and full of good health to all…….and the loss of weight I gained as I ate my way through the stress of 2012 would be much appreciated too!

xoxo
Catherine

URGENT PRAYERS NEEDED FOR MY MOTHER – CHRISTINE MORTIMER

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I had expected that tonight I would be posting an update on our trip to Disney, but honestly I am exhausted from feeling like my world has been once again turned upside down and shaken really hard. Shortly after we got home last night, my dad called to update me on my mother. As many of you know, she has not been well for many months now. She has seen doctor after doctor, and told she had anything from stress, to heart burn, to the flu. We hoped having her come to Colorado for our family reunion would be a change in scenery and climate to help – it didn’t. She had persistent coughing which led to extreme exhaustion and loss of voice.

After returning home she has again seen doctor after doctor, and a slew of tests. Still no real answers. This week she awoke with her face and neck swollen to where she was unrecognizable. Unable to open her mouth much, she was not able to even hold down pureed food. My father (Alan) took her to a different hospital where the “chiefs” got involved. On Wednesday – two years and three days after Peter was diagnosed with leukemia – my mother was diagnosed with a malignant tumor in her lung (aka – lung cancer). On her request, my dad did not tell us until we got home from Florida.

The news is not even 24 hours old. We know very little right now – but what I do know is that she is not having surgery to remove the tumor. She began radiation, and tonight had a port inserted so she can start chemotherapy. With a little research, I know there are different types of lung cancer, and am anxiously awaiting more information about the type and stage. We know she has had symptoms for about 6 months which have led to paralysis of a vocal cord amongst other challenges. She is in good care at the American Clinic in Lima (Peru). My aunt Lesley – a nurse practitioner – is on her way to Lima this week to assist my father in digesting the information as it becomes available and caring for my mother. My father has asked that my brother Roger (who lives in Spain) and I remain on standby until additional information becomes available over the next week or so. I know we both feel so helpless right now.

But this is where you all come in! Over the last five and a half years my mother has read every CarePage post, every comment and word of encouragement many times over. She has rallied her troops, and been amazed and how many folks reading this page rallied their own troops around praying and positive thoughts for Peter – she is convinced that no corner on this earth has been left out, and that it is through that power that Peter has overcome what appeared to be unsurmountable challenges. My mother is a woman of amazing courage, stoic strength, and deep love for family and friends. She is a lioness of a mother, and a pillar of strength to all who have needed her support. Right now she needs ours. I am asking you to please include my mother – Christine Mortimer – in your thoughts and prayers, and for all the Mortimer family, as we prepare to support her on this very difficult battle. I ask that you please share this with your friends, family, loved ones, and support groups. We don’t know what lies ahead, but we know how comforted she will be knowing that she is being lifted up in thought and prayers.

In advance I thank you on behalf of myself and all my family as we pull together our shattered hearts, and learn to be the pillar of strength she needs in ways only she has been able to teach us.

My parents – Alan & Christine Mortimer

xoxo
Catherine

Family Update – September 2012

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I’m back! Time to catch up with the Krause house!! We had a very busy summer. Our family vacation plans were thwarted by the second round of a super-rare infection – this time the CDC got involved and we all had to take mega drugs that made all our bodily fluids red for a week. Try not freaking out with that diaper change! Peter and I had a glorious week together …..just the two of us! As soon as John and the kids got home we went into crazy busy mode! The start of sports and school were eclipsed by the blessing of family visits. John’s parents, my parents, and my brother whom I had not seen in almost 8 years. He, his beautiful wife and their two gorgeous children came from Spain. All in all we had 6 weeks of guests and hope they had as much fun as we did!

The Mortimer-Garcia-Krause Family Portrait – 2012

So what did we do?
Finally home improvement! The well loved old green siding (wood from the 70′s) was replaced by and earthy stucco. To mark our territory we put a bear (THE Krause bear) on the side of the house. People literally pulled over to the side of the road and come tell us how much they loved the bear!  In addition our deck that was rapidly pulling away from the side of the house was pulled down. The gap was getting large enough that I thought I might need to train for olympic long jump. The deck was replaced with a patio and almost done fire pit on the back, and an upper deck with almost done outdoor cooking space. My ever-handy parents-in-law painstakingly are placing rock on the cabinetry. Doesn’t it look great! Will post before and after pictures once all the projects are complete – does not look like the same home! John has been working on the front landscaping…..almost there!

The front of the house……getting there! Will be very thankful when all the little remaining project are done.

Our annual pool party! And a big THANK YOU shout out to my mom who collaborated with John to pull off a great event…………I was nose to the grindstone at work until minutes before folks started arriving. The weather was great and much fun was had by all. I would be remiss if I didn’t thank all who made donations to our BW team and the other charities we were raising funds for – THANK YOU!

Pool Party……a paaaar-teeeeey!

CSDSA Buddy Walk 2012 – Team Peter Bear!

While my parents and brother were here we did so much! We celebrated my mother’s half birthday and my father’s 75th birthday. My mom got her much dreamed for Pandora bracelet and my father reclaimed his youth with a full Nascar experience. Yes – a full Nascar experience. Not sure who was more excited – him or the grandkids that watched him whoop the other racers as he almost lapped them at 160mph? He got flagged for going too fast which of course only added to the grandkids excitement!

My parents – aren’t they cute??!!

My dad kicking butt at 160mph!

Racing must run in the genes. We spent endless nights sitting on the patio under the glow of the tiki torches watching the kids race the broken electric car down the hill and through the yard, only to push it back up the hill and do it again, and again, and again! The engineers in the group figured out how to press the pedals to maximize speed and just the right angle to get maximum speed without taking out the neighbors back fence. My niece was hesitant to try it at first. Then gave it a try with a look of fear as she white-knuckled it down the hill. She tried again. Then again. And by the time us nervous parents were done with our umpteenth bottle of wine she might as well have been standing on the car surfing it down the yard at 160mph! Guardian angels were in overdrive!

The grandkids racing through the neighbors yard…..how many kids can you get on a toy car? – TOO MANY!

Night at the Sky Sox was a first for my family from Spain – and who can resist the excitement of a good game! Lights on, cool night, some peanuts and cracker jacks – perfect!

Sky Sox game with the family – first time our Spanish family watched one live.

Site seeing, zoo, shopping, big dinners and just play time made it so much fun!! I love my fairies running through the yards! It was so much fun having the family here and getting to know my niece and nephew……no more 8 years between getting together!!

The boys feeding the giraffes @ Cheyenne Mountain Zoo.

My little fairy princesses

Last but certainly not least to catch everyone up…..Jack and I were gifted with tickets to see our very first Denver Broncos game! You would have thought we won the lotto. Fully day experience – Starbucks for the drive to Denver, new T-shirt of me and jersey for Jack, train ride to the stadium and the the walk in. That first time we walked through the tunnel and saw the full stadium and thousands of people all there to cheer on the Broncos. The excitement! The fans! The music! There was so much to enjoy – including a phenomenal first half followed by a close but tough final loss. Having grown up in Peru, I was never exposed to (American) football. My enjoyment of the sport started in college when I watched the SF 49ers and Joe Montana (yep….. I just dated myself!). So for me it was extra exciting to see the 49ers vs. the Broncos. Jack was excited to share with his fellow players at practice how he got to see Peyton Manning. He started to snooze on the train back to our car from the excited exhaustion. Dinner together and the drive home ended with him tuckered out with a big smile on his face!

Our first Denver Broncos game! Me & Jack – August 2012

We were blessed to have my parents stay for a couple of extra weeks, and our friend John E. treated everyone to an exciting ride out in his 80 year old Ford! So much fun!!

Going back in time!

Busy summer – and extra busy October on the way! Right now surviving the start of school and trying to get back into a routine – not easy! Praying Peter continues to stay healthy as we approach the two year anniversary of his Leukemia diagnosis, and a year from his near fatal infection.
xoxo
catherine

Peter’s First Month of Kindergarten

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Oh goodness – I have been so delinquent in updates! Before I get started I want to give a big THANK YOU shout out to all who supported our Buddy Walk Team in honor of Peter. This year we exceeded our goal as a team, and the Buddy Walk far exceeded fundraising goals! The support in our community was outstanding – awareness of Down syndrome was built with TV and radio personalities staging full week events, many families interviewed on the radio, I was interviewed on local morning TV show (so exciting!) and so much more. There were almost 4,000 walkers the day of the event and the weather was perfect. We were blessed to have my parents join us again this year. It is so inspiring to see so many families come out to support individuals with Down syndrome, to see little ones that remind me how far Peter has come, and older kids that motivate me to encourage Peter to keep learning and developing. He may be a turtle in the pack – but as my pediatrician told me when Peter was tiny “How fast you go does not define how far you go” …..and those words still encourage me 5 years later!

Peter Bear with the glasses…. before he broke this pair and “lost” a lens.

A month ago Peter started Kindergarten!
For those who have been following Peter’s journey for the last several years, you’ll remember we were less than thrilled with our experience at his school. Last year for pre-school we had him moved to the district main office. During the transition meeting we asked that both his “assigned” school and our neighborhood school attend as we wanted to determine the best option for Peter. With some reluctance we agreed to enroll Peter at the “assigned” school. The staff at the transition meeting described the changes made to improve their program and impressed me. I was cautiously optimistic.
On orientation day I arrived to find we had a new kindergarten teacher overwhelmed at the idea of Peter in her class. My cautious optimism was waning fast. My dad was with me and sending me encouraging vibes as I think he could tell I was rapidly slipping into panic mode. Then arrived Michelle – a beautiful and kind lady with a friendly smile. “Peter! We’ve been waiting for you!”. Followed by a long discussion on Peter’s support at school, how to get him in and out of school, and much more. She was the angel I needed at that moment in time, she gave me hope that he was not getting lost in the system. She runs the special needs program and remembered all my “parental demands” for Peter and how we would work together. I think if I could have just leaned in and hugged her I would have!!
First day of school. Peter happily got in the car. Excitedly got out. The staff met him outside the back side of the school to escort him in. With a great sense of command he marched right into school and never looked back once! “Bye Peter!” …..nothing……”Bye Peter, have a great day!”…..nothing……”Peter, I love you!!!” ……and he was gone through the doors. I got in the car, choked back a few bittersweet tears, picked up my Starbucks and went home to let the conflicting emotions swirl through me. Joy, excitement, apprehension, pride, fear, anxiety, LOVE …..all jumbled up inside!! Eagerly got to school to pick him up. Michelle walked him out to the car – with a big smile he ran out and into my arms. “Oh, Peter had a great day!” – then the tears welled up again! He was happy, confident, excited – a huge smile from ear to floppy ear!

Peter outside WRE for first day of Kindergarten….such a handsome little dude!

Second day of school. Peter tested out the “Mama!” and leg grabbing routine. My heart sunk. John held his hand and guided him towards the school door. He looked so little with his giant tote bag. Disappeared again behind the doors. I was scared again and very eager to be the one to pick him up. He raced out of the doors again, big smile on his face and full of hugs.
Third day of school. Pulled into the parking lot, Peter looked out the window and exclaimed a loud “YEAH!!!” He was so happy to be there! And every day since then has been the same……he is happy to get there, participating well in class, following routines, practicing letters and sounds. He is so far behind his peers, but what he lacks in ability at this point he makes up for in joy and eagerness. The support staff has done a truly EXCEPTIONAL job at ensuring he is fully included – down to working with the teacher so she will know how to include him and help him succeed. Peter is truly happy at school!
To support Peter’s fully inclusion into his class and school – acknowledging his differences but embracing him as a peer – the staff is sending out a letter to his classmates that I wrote. Consider it a “Welcome to Peter” letter!

Hello Morning Kindergarten Parents! 

My name is Catherine Krause and my son Peter is in Kindergarten with your child – and we are looking forward to a wonderful Kindergarten experience! My husband, John, and I wanted to send you this quick letter to introduce ourselves and our son Peter to you.  

Peter has Down syndrome and several health challenges that have come with it. Down syndrome is the most common chromosomal variation in humans, occurring in about 1 of 733 live births. Many of you may already know someone with Down syndrome! There are common assumptions about individuals with Down syndrome – that they are always happy and very stubborn. In our case that is almost always true! As with typical kids, children with Down syndrome have different strengths and weaknesses, likes and dislikes, and have the full range of emotions although often they have a gift to find the good in any situation. As a matter of fact, children with Down syndrome – while they share many physical traits – are actually a lot more like their family than other individuals with Down syndrome. 

Peter is our fifth child, and older brother to his best buddy Gretchen. In addition to Down syndrome, Peter has had various medical challenges that have slowed his development down and kept him out of school for extended periods of time. We are hoping this year will be different! As a result Peter is still working on verbal skills as well as catching up with the basics such as letters, numbers and colors. Short in stature but the with physical strength of a bull, we realize he is clearly different even to the eyes of young children. Your children may have made a comment about Peter, or observed that there is someone in their class that isn’t yet keeping up. We ask that you please be open with your child as we don’t want to ignore Peter’s differences. We ask too that you also help your child understand that Peter is more alike than different, and that he sometimes has special needs even they can help with. In pre-school he had a group of girls that took turns holding his hand to make sure he got to the playground instead of trying to check out the other classes! He had another little friend that loved to “catch” Peter at the bottom of the slide and pointed the way back to the ladder. I know Mrs. Nelson can provide guidance for the children as necessary, but my hope is that all children will feel comfortable interacting with Peter.  If you have any questions about Down syndrome or Peter specifically that would help build appropriate awareness by all means please reach out to us at KrauseBears@gmail.com or on my cell at 466-XXXX, as we would be happy to provide any information that you need. As parents we truly believe that building positive awareness in all of our children will make the world a better place! 

While Peter is not yet at the level of his peers, I would like to share some information that I hope will help your child find a connection with Peter. At this point he is working on verbal skills and will shout our phrases like “I got it” when playing ball, “I see you” when playing peek-a-boo, or “what is that?” when exploring his environment. He uses basic sign language as well as pointing or other sounds to communicate. He will often try to get your attention by a gentle pat on the back or arm. He is a very social child, often trying to make friends where ever we go. He is currently undergoing chemotherapy and a few days a month is on medication that makes him a bit moody. We will be letting Mrs. Nelson know when that time of the month is coming up so she is aware he may be slightly grumpier. This last school year he worked very hard on learning class room routines with the hopes that he can function more easily with his peers in the class. We spent all summer working on playground skills so that he would have a chance to play with his classmates – he loves to go up and down the slide! While we haven’t mastered swinging on his own, he loves to race cars, play ball, chase others and generally just have a lot of fun. He helps his little sister’s dolls go to sleep by rocking them, and has recently decided he is a dog as he chases us on all fours barking. Peter loves yogurt, ice cream and hot dogs! But most of all Peter loves to be in the swimming pool, play with his trains, dance to music, throw ball, and love on dogs. We think one day he will work at a vets office because dogs are the reason he sneaks out the back door of our house and goes to our neighbor’s – her dog is bigger than ours! 

What are my hopes for Peter? My dreams for Peter are the same as for all my children – to be happy! I wish for him good friends, an opportunity to contribute to our community, and the freedom to chase his dreams! These school years are foundational years for all our children, and I hope that together our children will have the opportunity to know truth, create beauty, and practice goodness together through a constant sense of wonder and discovery! 

While Peter goes in and out of the back door (we joke with our kids that it is to avoid the paparazzi!) we look forward to getting to know you and your children too!

I know many times I have shared my fears about Peter being truly included, making friends, enjoying sleep overs – in many ways more so because of all his health challenges than his Down syndrome. Regardless it is a worry I have had since he was tiny baby bear in my tummy kicking to remind me he was there.
John went to pick Peter up from school last week. Instead of our joyful little boy running out into his arms came support staff asking him to please step inside. Given that we have experience with a “come pick up your kid” moments….lots of them……John sighed. He got to the gym with a few adults, Peter, and another child. A man walked up to him, introduced himself as the father of Peter’s classmate. He shared with John how his son comes home everyday after school and talks about Peter. He went on to say that he wanted to meet John as they are hoping Peter can come over for a playdate. You know what happened when John told me? Bad mom started off with “Are you sure it was Peter??!!” ….followed by a steady flow of tears that kept going and going and going. I am welling up just writing this! A short month into his kindergarten year Peter has made a little buddy who wants him to come over and play. Way to go Peter!!
We truly feel so blessed and so thankful that Peter has had such a great start to Kindergarten, and we know it would not be possible without Michelle and her staff that advocate for Peter when we are not with him.
xoxo
Catherine