Just a quick update….

Starting off with quick and easy…..

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

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

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

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

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

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

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

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

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

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

xoxo
Catherine

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

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

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

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

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

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

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

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

xoxo
Catherine

…and prayers get answered!

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

…. loving on Mr. Bear…..

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

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

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

Much to be thankful for!

xoxo
Catherine

Tackled at the one yard line…..

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

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

photo

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

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

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

xoxo
Catherine

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

Finally coming out of a blogging dry spell!

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