and then he turned 7!

Happy Mother’s Day to all the women out there – those with children, those who wish for children, those who “mother” other’s children, those who have lost a child, or welcomed a lost child into their family. Mothers come in so many shapes and sizes – each bestowed the honor in so many different ways – I wish for each of you a happy life! I know Carl Jung was not talking about mothers when he said this, but I think it applies to our lives in many ways.

“…even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better to take things as they come along with patience and equanimity.” 

I have been blessed to be a mom six times over at this stage in my life. And the above quote fits it beautifully.

This last Friday we celebrated Peter’s birthday! Little Mr. Peter Bear turned 7 years old….and what a ride it has been!

Happy 7th Birthday Peter Bear! - May 9th 2014

Happy 7th Birthday Peter Bear! – May 9th 2014

 

7 years + 7 months ago I found out that the little baby inside me “was not developing normally”. Shortly thereafter we found out he had Down syndrome and cardiac issues.

7 years ago Peter rushed into the world 10 days early – he looked big and healthy like his siblings, but it was not long before he was whisked off to the NICU. He was sicker than we had anticipated.

In the NICU @ Penrose Community - Colorado Springs - May 2007

In the NICU @ Penrose Community – Colorado Springs – May 2007

7 years – 7 days ago I woke to the words “Peter took the turn for the worse last night, we don’t know if he will make it through the day”. He was baptized in the hospital as we prepared for the Flight for Life to Denver – and that day was the first day I got to hold him in my arms – tubes and all!

Peter's baptism before going to Denver - Fr. Steve Parlet - Penrose Community, May 16th 2007 (I felt worse than I look....and that was bad!)

Peter’s baptism before going to Denver – Fr. Steve Parlet – Penrose Community, May 16th 2007
(I felt worse than I look….and that was bad!)

Finally in my arms! I spent hours, days, weeks in that chair thankful to have Peter in my arms! - May 2007 @ Children's Hospital

Finally in my arms! I spent hours, days, weeks in that chair thankful to have Peter in my arms! – May 2007 @ Children’s Hospital

"....let me ponder the meaning of life...." - June 2007 @ Children's Hospital

“….let me ponder the meaning of life….” – June 2007 @ Children’s Hospital

7 years – 7 weeks ago, Peter had open heart surgery. It was sooner than we had anticipated. Peter’s pulmonary pressures were the highest his cardiologist had ever seen in a neonate – he needed his heart repaired to have a fighting chance. As the doctor put it “….otherwise you will spend then next 12-18 months watching your son die in your arms”. As tiny as he was, we gave him a little green mohawk and handed him over to the nurses. I still choke up when I think of the nurse walking away, down the hallway, with Peter in her arms as the doors closed behind her.

Ever felt like a science experiment? - July 2007

Ever felt like a science experiment? – July 2007

Then Peter came home – tubes, tanks and monitors – our master bedroom was converted into a mini hospital room as we were too afraid to have him any more than a few feet away from us.

6 years ago we found out he was a silent aspirator, and had severe lung damage.

5 years ago Peter was down to oxygen at night only – we were so excited!

4 years + 7 weeks ago Peter finally began to walk…….he got up and walked right across the park. It seemed the challenges were behind us and we were excited for what the future would hold.

"I am walking!!" - March 2010

“I am walking!!” – March 2010

3 years + 7 months ago we finally knew why Peter had not been himself – he was diagnosed with Leukemia. Once again we were rushed off to Denver to start treatment and give him a fighting chance. He was gone for over a month before we brought him home. Little did we know how many times we would be in and out of the hospital. Many of them included “We will know in the next 24-48 hours if he will make it or not”. We never said anything – we knew how overwhelming this was to those who loved and supported us – as we were overwhelmed ourselves.

We found out Peter has Leukemia - October 14th, 2010

We found out Peter has Leukemia – October 14th, 2010

2 years + 7 months ago Peter took another serious turn for the worse. He was holding on to his life by a thread – little did we realize just how hard he was fighting to stay alive. Within minutes of arriving to the hospital, he was on a ventilator in the PICU and would be there for another 7+ weeks. This time we did hear “You need to make end of life plans”. He was down to the last treatment option – but holding on despite the odds. His recovery was nothing short of a miracle!

On life support - November 2011

On life support – November 2011

1 year + 7 months ago we found out that my mother – Peter’s Granny – also had cancer. Less than two months later she left us, leaving behind a void in our lives.

Peter & Granny - January 2009

Peter & Granny – January 2009

7 months ago we honored the three year anniversary of his cancer diagnosis. Finally done with chemo, his body was still adjusting to life post-chemo……blood counts up and down, liver counts all over the place, unexpected symptoms that chilled us to the core thinking the cancer was back – but in true Peter form, he pulled through.

7 days ago Peter started off my week with “Mama….Mama…..Mama”. No matter how many times you say “What Peter?” he will keep calling your name until you’ve established satisfactory eye contact and disengaged any potential distractions. This is usually followed by “iPad?” or “Bo?” (for Bo on the Go – his all time favorite show) or “TV?”. Less words, but the requests of a typical 7 year old. I have spent the last seven days on a complete emotional roller coaster. God bless those who have crossed my path with my emotions on overdrive!

The last seven years have been a contradiction in so many ways. The longest seven years, yet each day flies by. The hardest of emotional blows, yet the immense joy that comes from a simple hug. Days of feeling alone in our journey, yet blessed with friends who just find a way to help. Moments where you feel speechless, but thankful for the friend that just listens as you babble for hours about your fears and anxieties. In many ways the last seven years have been the hardest, yet the easiest.

We have learned to never take anything for granted – not a first step, not a first word, not a healthy breath or the promise of tomorrow. Yet it is because of this that each breath, each first, each tomorrow is met with a joy beyond measure.

Yes the last seven years have been trying, and at times down right exhausting, filled with too many days of feeling like you just aren’t doing enough. And, the last seven years have been filled with so much joy, simplicity, pleasure, happiness and love! We celebrate each time any one of our children achieved anything we may have previously taken for granted.

It is normal to assume that with all these challenges, Peter would have his own reservations about each day. He does not! He meets every day with excitement and joy. It often starts with waking up way too early just to climb into bed with us and go back to sleep…..every day is better when you wake up wrapped in the arms of someone you love!

So here are my seven celebrations of the last year  –

  1. Peter is in his second year of Kindergarten….and what a difference a year can make. Last year he couldn’t make it through a morning of school without collapsing half way through and sleeping in the middle of the classroom. This year he rides the bus to school like a big boy, and comes home after a full day of school with more energy than should be legal!
  2. Peter knows his colors, ABC’s (upper case, lower case and phonetically), his numbers, and is starting to read. With a bit of support he can say the letters of his name and try writing them. First grade here we come!
  3. Peter has been invited to birthday parties! This is one of those you things you assume…..you assume your child will be invited to every birthday party because the school rules are if the invitations are handed out in class, every child must get one. Come on – the rules are on our side! Well, we found out last year what it is like to have the child that is not invited to parties. This year he has probably gone to seven – and loves them!
  4. Peter’s vocabulary has exploded! While still not stringing many together into sentences or conversations – each day I am amazed at a new word coming out of his mouth. His articulation is so much clearer! He is on his way to joining the family of motor mouths!
  5. Peter has attitude. Huh?! Dispel those rumors that kids with Down syndrome are always loving and happy……this Little Bear has attitude…..which includes teasing G into chasing him with a “nah nah nah nah boo boo”, screaming at or wrestling his brothers if they take the iPad or turn off Bo On The Go. It also includes the almost teenager worthy tone of “uhh, mama!” with the roll of the eyes and desperation that comes with interacting with someone who just doesn’t get it! Then there is the order barking “GO GO GO” when we are in a hurry, or the cow bell call of “EEEEEAAAAAATTTTT” to announce dinner. We can’t forget the “you go get it” (mark that down for his first 4 word sentence)  when he asks for his milk and your answer indicates that it is anywhere more than 7 steps in walking distance. My favorite of course comes when we are at church and we have Fr. Joe……in the solemnity of starting Mass, you hear “Hey Joe!” called out from the pews. We pretend it is not Peter.
  6. Peter is potty trained!
  7. My son is the king of the world! Yes….he really is the king of the world – his world that is! No matter where he goes – everyone knows his name! And yes….you can say that to the tune of Cheers. Grocery store, Starbucks, school, doctors office, pool, library, church…..you name it!  And this also includes a devout following of women. He understand that to rule his world means bestowing his followers with hugs, kisses, smiles, a gentle hand holding, and of course knowing them by name. You should hear these ladies squeal when Peter says their name. Another upside of being speech delayed…..when you say someone’s name they celebrate big time!
Yes - he takes selfies with his ladies! - April 2014

Yes – he takes selfies with his ladies! – April 2014

Hand-over-hand support - but looks a lot like "Peter"! - May 2014

Hand-over-hand support – but looks a lot like “Peter”! – May 2014

So there you go it……lucky for those of you that made it this far in the post, I decided to go with the top 7. Originally I was going to go with 7 x 7, or better yet 77 things about Peter to celebrate. And don’t challenge me – I could probably come up with 7’777,777 things to celebrate!

Through the challenges I have learned that there is always something to celebrate, something to be thankful for, something that makes the hard days easier. As I read recently, not every day is a good day, but there is good in every day……or something like that!

I don’t know what life will bring in the next seven days, seven months or seven years – I take none of it for granted – and just pray that each day we LOVE like there really is not a tomorrow.

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

…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

The day I thought would never come…..

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

Peter Bear Update – July 21st, 2012

What a week we’ve had! Peter has enjoyed lots of time outside, evening walks, pool time (after he was de-accessed) and late night movies. To look at him you’d say he is doing great – good color, energy, smiling, and his speech is taking off. It is amazing what he says when there is no one else doing the talking…..it gives me hope! Peter has had his naughty times and his funny times – I came downstairs to get his shoes and when I went back upstairs he was no longer in my room. I could hear music playing from Alexandra’s room – and low and behold little dude is standing in her room, my mascara in his hand, singing away to the song on the radio as he rocked back and forth, using the mascara as a microphone. I so wish I had my camera to capture that moment of just pure play and joy!

Peter with Alec who helped care for him this week while I was at work…..Peter’s new best buddy who taught him how to dunk the basketball!

Peter did have labs this week and they were disappointing. We want his ANC to be 1500 and he went from 100 to 380 in 10 days. It normally doesn’t take him this long to recover – so of course I am on a roller coaster of emotions right now. I am working on remaining optimistic that this is just a slow recovery given how much his little body has gone through….but I do have times were I see him look and smile at me, and I fear losing those moments. We are going back in Wednesday for more labs. The hope is that he has improved and possibly even ready to start chemo on reduced dosage. However, if his ANC is not better or has worsened, then we will most likely need to do a bone marrow to determine if he has relapsed. My stomach tightens just thinking about it.

The first couple of days that the family was gone, I felt so disoriented. I missed them and was toying with sadness over many things. Then Peter and I found our rhythm! We have had just so much fun this week. Even though we haven’t ventured far because of his fragility – we have just enjoyed so much time together. Even though it isn’t always easy – and his sleeping has been erratic at best – I am going to cherish these 10 days of undivided Peter time for ever! And despite the stress of work and Peter’s health – I can’t help but smile big every time Peter says “Mama, come on…..let’s go!”

Keeping this short as getting Clifford (yes, the big red dog on DVD) to ‘babysit’ Peter for 10 minutes is a luxury – usually only get about 3 minutes before he realizes I snuck away to do something.

xoxo
Catherine

Peter Update – Friday May 25th, 2012

Peter had his Oncology appointment….all went well! His ANC (absolute neutrophil count) was up to 1200, his platelets were great, and his red blood cell count was perfect. For all intensive purposes, Peter is right back where he should be…..but it took being off chemo to get there. He has started back up at 50% of his normal dosage. On Monday he will get 50% dosage of Methotrexate. We know that does him in, especially when he is still recovering from the Vincristine infusion. Next Friday Peter will go in for labs to make sure he is holding steady. Then the following week would be due Vincristine and Methotrexate….the perfect storm in Peter’s little body. Makes my tummy churn just typing it!

The team did access Peter’s port and took a lot more blood than normal. The Health Department called and said that what they found in Peter’s blood was actually the Type F (not type B) Haemophilus Influenza bacteria. They were worried about G being ok – she is doing great! The Augmentin that Peter is on should take care of anything. I still think it was contaminated blood – but heck, at this point we just aren’t taking any risks! Some of the extra blood taken was to determine if Peter “zero converted” when he got his vaccine. In addition, prior to being discharged, Peter had labs done to determine the levels of his immuno-globulin (I know I mutilated that!)…..and the good news is that it came back in a normal healthy range meaning he wasn’t any further suppressed than he should be at this point in treatment.

So where do we go from here? That is still in the works. Which yes, is frustrating for me! The fact is, as much as I would like there to be clear answers, there never are….so with a deep breathe I accept that. The immediate plan is chemo at 50% and watching him very closely. There were several options on the table – altering the amount of chemo he gets – decreasing some, possible increasing others, to find the “cocktail” that keeps the cancer away but doesn’t risk Peter’s life in the mean time. Another option is re-introducing a recovery agent – Leucovorin is what we have used in the past. The risk is that over using it can increase the chance of relapsing – so it would need to be just the right amount. As a result of the immunity levels being acceptable for Peter, putting him on monthly IVGG is off the table. So it is going to take a lot of watching Peter closely (labs) and tweaking things until we find what is right for Peter. His nurse and doctor will be at the Leukemia monthly conference on June 6th and should be discussing Peter’s case there too.

More prayers, more patience, more cherishing the moments we have together. Peter is having fun again – he is playful and enjoying the outside. What is amazing is that since bouncing back from this episode. he is sleeping well and has a great appetite…..and that doesn’t happen often! He actually ate one and a half baggies of Goldfish crackers……that is unheard of for him! Last night we had strawberries and whip cream for dessert….he wasn’t ready to try the strawberries but he ate a lot of whip cream!

Peter running in the land of dragons….at the stone yard picking out items for our back yard project.

 

So much more to still tell of Peter’s journey! We were all in agreement that Peter is unique, with all his medical challenges he is more sensitive to chemo than most kids with Down syndrome – so in this case Peter, yes! IT IS ALL ABOUT YOU! Praying for wisdom of all caring for Peter – that together we can find the right treatment plan for him, so Peter can continue to run forward in life with a smile on his face and arms spread wide to keep filling this world with hugs.

 

We love you Peter!!

xoxoxo

catherine

a new birth

Mother’s Day 2012 and I sit at my computer – kids up and down the stairs to my little basement office – another hug, another kiss, another “can I have…”, and another “I need…”. The chaos of another Sunday night as we prepare six busy kids for the week ahead and I will be boarding a plane again! Throw on Mother’s Day and it seems like a crazy night to take on another project. But here I am, typing a few words and dreaming of many more to come. Just five short years ago I did not know what a blog was! Then my life changed – seven short days after I birthed Peter the words no mother wants to hear – “he took a turn for the worse, and we don’t know if he will make it through the day”. That night blogging started – Peter was in the careful care of the staff at The Children’s Hospital in Denver when I was encouraged to start a “CarePage” as a way to keep family and friends updated on Peter’s progress. What started as updates rapidly became personal therapy – a few minutes a day to assess what was happening, re-set my thoughts and feelings, and focus on the next step to take. Over the years the CarePage evolved into family updates, and ebbed and flowed with frequency. I played with other tools (yes – loved my “webme” until Apple took it away! I still love you Apple!!), and today I start afresh! Hello world!

Why do this now? I love to write! I may not be eloquent, or grammatically correct, and at times probably a bit boring – but it has become my sharing, my healing, my memory keeping…..the minutes I take to write are like emotional cleansing. Recently someone told me to not fall victim to chaos but to navigate it with focus on what really matters. Wow! Really?! For so many years I’ve complained of not enough time to do what matters, what I enjoy, what is good for the family. The word “navigate” spoke to me – I can’t control so much around me – but I can navigate it with my compass to what matters. And this matters! If nothing else, one day my children will have my memories when they may have slipped from my mind.

My Mother’s Day wish? ….to spend time as a family coming up with our “purpose statement”. No longer do I want to fly-by-the-seat-of-our-pants! No longer do I want to be re-active, but rather purposeful – navigating our lives with our own northern star. Why you ask?….because as Alexandra said best – “we are Krause bears!”. We lounged around my favorite room – our family room with scattered toys, warm fireplace, and barn wood on the walls – the little extension to our house that makes me feel like I have run away to our cabin in the woods. It started off with my sharing a quote recently that spoke to me – “the greatest danger is letting the urgent things crowd out the important” (Charles E Hummel). I can’t stop the urgent, but I can navigate the urgent, with the important as my guiding star. We talked about what is important to us, when we are our best and when we are our worse. We talked about what we wish we could do more of and what we could do better. We talked about home environment, principals, and purposes. We talked about what makes us unique as a family and as individuals – and what we each hope for in life for each other and ourselves. We shared stories, thoughts, tears and of course laughter. The common theme coming from my little bear cubs was compassion, love and respect. What they want is more time to celebrate, to have fun, to enjoy each other…..to create memories and traditions together!

What is our purpose statement after all that? It is still in progress!

This creative outlet all began with a baby bear…my Baby Bear – now grown into a 5 year old Peter Bear! So while I hope to share so much more, maybe bring over the past as I record our future, share our reflections, laugh some and share some more – I am wrapping this entry up with a Peter update. He turned 5 this last week – and was preceded by a week of extreme emotions for me. Rationally I knew it was a time to celebrate, but emotionally it was a week of letting the cracks appear and be healed. Birth, NICU, flight for life, more NICU, kidney failure, liver failure, oxygen tubes, feeding tubes, pumps, monitors, nurses, therapists, pulmonary hypertension, cardiologists, open heart surgery, hearing loss, poor vision – that covers Peter’s first 7 weeks. More oxygen tubes, feeding tubes, monitors, pumps, nurses, therapists, doctors, appointments, charts, tracking, worry, fear, love….smiles, rolling over, learning to sit starting to crawl – that gets us to a year. More tubes, more specialists, more charting, and throw in some aspirating..more smiles, more milestones, first laughter, and first plane trip to Peru – that covers Peter’s second year. Less tubes, less oxygen, more movement, more milestones, more laughter, more fun and finally walking – that covers Peter’s third year. Pre-school, pain, discomfort, leukemia, chemotherapy, more drugs, less hair, grumpy pills and saving pills, more doctors, more nurses, more scares in the hospital, more transfusions, more doctor visits, more loving, more tears – Peter’s fourth year. Less cancer, less oxygen, more good days, less chemo, more hair and pre-school again….then a very scary hospital stay – 9 weeks and another “he took a turn for the worse, and we aren’t sure he is going to make it” – followed by miracles, healing, more laughter, three pairs of glasses, pre-school again and lots and lots and lots of love – Peter’s 5th year!

So how did we celebrate? Quietly – no performing, just embracing. Peter had chemo that day, he stayed home from school and then played outside. He had his favorite pasta with home-made alfredo for dinner. A birthday cake, a Mr. Potato Head, a whistle and some fun fridge magnets……none of which replaced what he really wanted – time, love, laughter, fun and playing. Then we went to the hospital again – this time for a visit. We took a cake that simply said “Thank you!” and visited the PICU. It was hard to see Peter’s room again – but I am so thankful it was empty – no one having to go through what he did for so long. And as we handed them the cake we said there was no where we would rather be than with them, because they are the ones that gave us another birthday with Peter.

Happy Mother’s Day!

catherine….xoxoxo