Month: January 2011

Just Holding On

If you’re thinking about us and able to pray for something specific…..

Jon and I tired!

We are feeling the effects of the last 7 months of stress and we’re exhausted!

I’m not feeling depressed and/or sad, just unbelievable tired and really worn down. In some ways we are looking forward, excitedly, to moving on to the final maintenance stage. There are 7 stages of this Leukemia Treatment. We’ve completed 3 and are 1 week away from completing the 4th stage. There are 2 more “active” or “intensive” stages and then we enter the maintenance stage which will last until the end of September 2012. But basically, Angelica should be finished the end of stage 6 somewhere around the end of May/beginning of June. It’s getting closer. We can see it. We can see that there is light at the end of this tunnel. We are excited about this. We are looking forward to what amazing adventures this summer will bring for our family after a year of intensive chemotherapy. Looking forward, we are so excited.

And yet, physically, we are exhausted!

Our bodies are so tired. We have been going so fast, so hard, for so long and we are finding that the pace and stress are taking their toll.

I’m finding that mentally, I’m not as sharp and “on the ball” as I was and I totally believe that it’s the fatigue affecting me. It’s affecting my ability to plan and organize and remember and keep on top of things. With 7 people in our family, chemotherapy, schedules, doctor’s appointments, school events and homework, counseling appointments, family organization, etc…..I’m finding that things that would have been a snap for me to do, co-ordinate and remember…..well, I’m dropping the balls on lot of things and this only adds to the chaos. In the long run, this ends up placing more demands on our time and energy and that’s not cool. Physically, I’m in constant pain. I’ve hurt my arm and shoulder carrying our sweet (but very heavy) baby while still trying to accomplish everything that needs to be accomplished. The constant pain is wearing and yet…..things still need to get done. I’m trying to walk the line between actually “damaging” my arm and waiting and hoping that things ease up over here.

Jon and I are lonely for and missing each other. Our “time together” and “relationship” are another thing that has received a blow from this whole situation. We are doing okay. Don’t get me wrong. Our marriage is not “on the rocks”, we are just missing each other terribly. I would say that instead of “growing” closer together right now, we are just “holding” and sometimes……just holding steady is okay.

We know that we have the rest of our lives to make up for this time, but that doesn’t change the fact that we are missing each other right now. One of the hard things about right now, is that when we do have the rare opportunity to “be away from it all” and to just “be together”….the thought of organizing and planning an evening requires more effort than just keeping on, keeping on. Often, its more difficult to have to arrange someone to watch the kids and to try to figure out where we can park our tired selves for a few hours….and at this point, we are so tired that we can hardly form coherent sentences, let alone carry on relationship building conversation and so we end up frustrated and still tired.

I keep telling myself that this is only a season. I know this. I know that this time will pass and we will not always be in this position, but that doesn’t change how tired I feel “right now“….or how difficult all of this is.

This is a difficult time and we are trying desperately to just hold on.

So, if you’re thinking about us and able to pray for something specific…..

We’re tired and need to be able to hold on for just a little bit longer.

Thank you!

What a Blur

This week has just flown past.

Not in a good, awesome, I wish it would have slowed down so we could have enjoyed all the wonderful goodness that we could possibly get, but more like a….I’m so tired because no one in this house is sleeping and the days have now run into one ginormous blur and I just want to be a bear so that I could hibernate for an entire winter.

Eating and sleeping….that sounds about perfect to me, right about now.

Jon and Geli have gone into the hospital to check her levels as we suspect that she may need either red blood or platelets….or both.

So Today could be a LOOOOONG boring day for them, but if she does get blood and/or platelets, it might help her to feel better. She’s been feeling really off and I believe it has to do with the Ara-C. I am SO incredibly thankful that she only gets 2 weeks of that drug as opposed to the 4 weeks of it, last time around. I don’t know how she would do if she had to take another 2 weeks of it. It’s a pretty hard core, nasty drug. We believe that she’s hit the bottom of the valley and it headed back up the mountain – figuratively speaking, but she’s still feeling like she’s stuck somewhere in a foggy, dark valley and it’s hard when you can’t see the light or the top side of the mountain….if ya know what I’m saying.

Basically, she’s tired. This is a HUGE and LONG fight and she’s very tired.

Judah’s been acting like….like…..well, like a baby and waking every couple of hours in the night. I’m waking for him to cycle back out of this nasty stage and back into the “only waking once a night” stage. This current stage sucks and I much prefer to get “actual” sleep.

Do you know how fast a family of 7 can take a house from clean to “not very tidy”? It’s pretty much instant! Boooo – and that is why I HATE cleaning!

I’d really like some chocolate or a cookie or something else that I probably shouldn’t have……You know, something with gluten or dairy and sugar.

And, that’s all the time I have for today as the baby just woke up from his incredibly short nap……..SUCKS!

Oh well, I’ll try to find some rest and joy and I’ll meet ya back here later.

Update for Tuesday January 25th

Today is a busy day over here.

Jon and Geli left at 7:15 to go into Vancouver for some more chemotherapy. They were hoping to get in and get started on what is supposed to be a VERY LONG DAY and the traffic has been so bad that even now at 9am…they are still not there. They are close, but not there yet.

Their day will most likely look like this.

Show up, get accessed (the IV into her VAD), get blood drawn, wait 30mins to an hour for blood test results, then most likely get a platelet transfusion, and quite possibly a red blood transfusion, then a dose of chemo via IV and then another dose of chemo shot directly into her thigh muscles, then they have to wait an additional 3 hours to make sure that she has no reaction to the intramuscular shot and then they get to head home. They should arrive home any where from 6pm-8pm tonight.

That’s a whole 12 hour day……YUCK!

Out here, we are headed into 2 appointments for Judah to see how things are going for him. He seems to be doing okay and I’m really hoping for some great and amazing news from his appointments today.

Angelica is doing pretty good. She is still having some nasty headaches, although on the pain scale they’ve gone down from a solid 8 out of 10 to a 3 out of 10 and while that seems like a fabulous drop in pain to have had constant headaches for over a week….even a mild headache is annoying. I think that the constant pain is wearing. She had a pretty down day on Sunday and that seems to be when she bottomed out and things have headed up from there. She’s pretty tired and today’s blood test will give us more answers as to why.

We’ve been giving Xani something to help her sleep and it’s amazing the difference when she gets a little bit of sleep, but we still need to deal with “WHY” she’s not sleeping and some of the emotional crap that she’s not processing very well. We have been in contact with one of the psychologists at BC Childrens and I’m going to go in and talk with her next week and then we’ll take Xani in.

Other than that things are going okay and we are just trudging along taking things day by day.

Cousins (picture heavy)

My sister dropped Jack off a our house the other day. He’s such a sweet little boy with such a cute little disposition. He’s so darling.

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Of course I got out my camera, because he just “needed” to have some pictures taken. Look at this cute little face…..

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Then I sat the two cousins together to try and get a picture of them…but Jack wasn’t having any of it. He super quickly crawled away. He’s pretty quick and we’re hoping that he’ll give Judah a few tips or pointers on crawling – the proper way! But If you look at Judah’s face, he doesn’t really look that impressed, does he? He looks like he’s saying, “Show off!”

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I figured that I’d take the opportunity to take a picture of Judah sitting, cause I had mentioned that I wanted to get a picture of him sitting to show you all. He’s sitting…..I can’t believe how fast the time is flying. Next thing I know, he’ll be in Kindergarten and then off to college. OH MAN!

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Well, not to be outdone….Jack had to show us all that he was almost ready to stand. “See me balancing! All I have to do is push up, and VOILA! I’m standing!”

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“Not only that…..Here’s my Blue Steel! You can’t do that one, Judah, can you? Just try to top that!!!”

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The boys were headed right into a smackdown and so I distracted them with some food….

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Hey Jack, man! You dropped some of those potato puffs on your shirt! It’s a bit embarrassing looking, but mostly I just wanna know if you’re gonna eat that. I’ll help ya out, if you’re not???

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Hey! Lady, where did those treats go? We’re still hungry, eh?

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Hey Judah! Slow down, don’t cram those in so fast! I wanted some!

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Hey Lady! Are you still taking pictures of us? Haven’t you got enough already? Geesh!

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Celebrating Late

It was my Momma’s Birthday on January 14th, and I missed it.

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My Mom and Dad

I didn’t completely forget about it, but I never got a hold of her to wish her a happy day and to let her know how much I love her. I thought of her a few times, and each time, i told myself that I’d call her as soon as i finished whatever it was that I was working on at that exact moment.

Then I woke up the next morning and MAN….I felt bad. But, she’s my momma and she loves me and she loves to celebrate life – any day, any time for any reason……and so it was all good!

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We asked my parents to come and have dinner with us this past Monday night.

I knew that we were going to have them over and yet for whatever reason (I’m going with lack of sleep) I totally zoned on the fact that we were having them over “for her birthday”. I can’t even believe this myself. I’ve dropped the ball on a lot of things lately. My brain just doesn’t seem to be firing on all cylinders these days, and that’s not so cool!

And that’s how I found myself at 3:30pm in the afternoon getting ready to think about make dinner (we were gonna eat at 5pm) and realizing that I had done NOTHING about a birthday cake. I didn’t even have a pie or muffin or anything made up that we could even just “pretend” was something “birthday” related.

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I quickly tried to think of a quick alternative. Normally, it might just be easy to pop to the store and pick up a cake or some other dessert, but with the different food issues, that’s not really an option for us.

And then I remembered, Udi’s Double Chocolate Muffins. These little beauties are Dairy, Egg, Soy and Gluten Free and…they are actually delicious. Most importantly, I could pick some up at both of my local grocery stores, IGA and Save On.

I figured that I could make some powdered sugar icing with my soy-free Earth Balance and some almond milk and at the very least, we’d have something to stick a candle in.

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It’s not the most beautiful birthday dessert that I’ve ever thrown together, but I was able to throw it together in less than 10 minutes and for a last minute rush job that takes a dairy, soy, egg and gluten free food issues into consideration, I think it’s pretty good.

We had some great family time and enjoyed celebrating life, and got to eat some yummy chocolate cake as a bonus.

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I sure love you, Momma! You are worth celebrating, EVERYDAY!

NO MORE

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Fear is a horrible, terrible thing.

I’ve been battling fear for as long as I can remember and I’m sure from even before I can remember. I hate it. I hate feeling out of control. I hate feeling like I’m being choked. I hate feeling like I can’t breathe or think or reason. I hate fear.

For a long time, living with fear was just my normal.

I was terrified of everything and everyone. I’m not even kidding or joking when I say that. I was scared that I’d do something wrong and that I’d would then get in trouble. I was scared someone was going to be disappointed in me. I was scared that I’d make a wrong choice – and so I would make none. I was scared that I wouldn’t get good enough grades. I was scared that no one would like me. I was scared that someone would think poorly of me. I was scared to ask for help or directions or…..well, just anything. I was scared that people wouldn’t like me if they knew who I really was. I was scared that they’d reject me. I was scared to even “try” to do things that I was interested in for fear of failure.

I was terrified……and it sucked.

A few years ago, I went through quite a bit of counseling and I dealt with some of my issues regarding and related to fear. I’d had enough. It felt like fear owned me. I couldn’t do anything. I couldn’t live. I wasn’t living. I was simply existing and even then, I’m not really sure that “existing” is even a good enough description of how bad things were.

Now, for those people who knew me back then (I’m talking from 1985 – 2005), I’m not sure if you knew all of this about me. Did I do a good job of hiding this? I got told that I came across a stand-offish or as a snob and that was never my intent. I was only trying to protect myself from what I was sure was a world of hurt and pain. My perception of life was so off, and it took getting some help for me to even realize just how bad things were.

It’s like I was on a road traveling through life, only I had bags and bags and bags of garbage tied to me. The bags were so unbelievably heavy that it took every ounce of energy that I had to even stay upright, and forward movement was almost impossible. I cry a little inside when I think of all I could have done as a teenager and young adult were I not so scared and insecure. Don’t get me wrong, I love being a wife and mom and I would not give up this life that I have, to go back for another try, but there were things that I could have done differently or heck just DONE, were I not so scared. Chances that I could have taken……

I felt like this for a far back as I can remember. I didn’t realize that I had the power/strength/ability to make my life different and it took a long time for me to come to the realization that what I was dealing with wasn’t “okay” and that I didn’t have to stay like this. I knew that others seemed to be living so much more free-er than me, but I just figured that they were better or had it more together or……were way better at faking it than I was. I didn’t know what it was like to live free from fear. it wasn’t until things go SO difficult and SO uncomfortable for me that I realized that I needed some help and…it wasn’t until I got some help that I was able to see just how captive I was to fear.

Living life out from under the heavy, overwhelming burden of fear was amazing. It wasn’t perfect, but lets say that if I had been weighed down by 50 bags of garbage, maybe I got rid of 35-40 of them. Can you even imagine the difference that would make?

I could breathe. I could walk. Heck, I could run and skip and sing! It was like the storm cloud that I’d been living under parted and the sun was shining and the birds were singing and my world seemed so new and exciting.

Living life became fun and amazing. There were still things that I struggled with but I could see how bad it had been and how far I’d come and I was determined to figure out a way to get rid of even more baggage and to carry forward in my life without being weighed down and held back by fear. And I was doing just that………..slowly and steadily, I was moving forward towards a life of greater freedom and confidence……

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The last 6 months have been hard.

I feel scared.

I hate that I’m scared. I cringe every time the phone rings. I have this sinking feeling in the pit of my stomach that it’s going to be bad news. I don’t want to talk to people because I’m scared that they are going to judge me, or that they might ask me a question that I don’t have an answer to. Typing that out it seems so stupid. I’m aware of how stupid it sounds and I’m not saying that what I’m dealing with is rational. I’m completely aware of how irrational this all is. I’m scared of something bad happening to my kids. Every fever, every headache, the fact that no one is sleeping well – it all weighs on me so heavy, it’s almost crushing……years ago, every issue that came up, I’d immediately go into “worse case scenario” mode and recently, those thoughts have all been back. Every little toy or piece of food on the floor is seen as a choking or health hazard for Judah…

I hate waking up to a horrific dream regarding something bad happening to my kids or family. I hate waking up in a panic wondering if the kids are alive. I hate feeling like I’m being judged about how clean my house is or isn’t; or how much homework my kids do; or how well my kids behave; or how well I’m coping or not coping……

I hate it.

I hate feeling like this. I recognize this from before. I recognize the feelings, the fear, the insecurity.

No one has said any of this to me. No one is judging me. There is nothing wrong with the kids. This is the fear weighing me down and holding me back…..

I don’t want to “exist” like this. This is not living. I’m aware that there is a part of right now that we are “surviving” through, but for the most part of my life….I want to LIVE. I want to live free from fear and insecurity.

It’s time to get rid of some of this garbage that’s weighing me down. I’ve done it before and I can do it again. I’m strong enough. I’m brave enough. I have the courage to face this head on and to not let it weigh me down. I’m reclaiming my life back. I may have been dealt a hard blow and fear may have tried to dump all that garbage back on top of me, but I won’t stay down. I’m not tied to the garbage anymore, and it’s not tied to me.

One thing that I’m excited about…..I know how to walk down this road. You know how when you gone somewhere once before, that you have an idea of how to get back there. The first time you go down a road to a destination…you are hesitant and cautious, but once you’ve been there, you have more confidence…. You feel like you can navigate through the roads and you recognize the landmarks and you can get to your destination that much quicker….ya, that! That’s where I’m at…..

I’ll admit that there is a part of me that feels scared…..and that’s just fear…holding me back, and I’m not going to let it win.

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Hebrews 13:6

Stopping to Enjoy Little Moments

Sometimes before bed, little tummy’s get a little bit hungry.

Dipping

There’s nothing quite like a warm glass of milk and some cookies for a bedtime snack.

Eating

It’s especially fun when you can pretend that your cookies are glasses….mind you it’s a little difficult to see through them, but it’s still fun to pretend, isn’t it?

Seeing

Sometimes its nice to just stop and look at all the little details. Some of those “little” things” won’t stay little for very long and it’s so nice to be able to stop and take a minute to record and remember the little things in life.

Toes

And sometimes, you are reminded that life is a bit messy and sometimes “really enjoying life” involves a bit of mess, some clean up and may even require some changes after, but it’s all worth it…….

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These little moments in life pass by so quickly.

Too Fast

My baby is growing up WAY TOO FAST.

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Hey! Are you talking to ME?

There are aspects of my life that I wish would go much faster and yet typically, I try to just enjoy the moment that I’m in. But in all of the busyness of this season of our lives, I often feel that I’m missing out on “just enjoying” the time with my baby. I think that I know that once this time is gone, I’ll never get it back and so I’m trying to hold onto every moment that I can get. Often it feels like I just don’t have the opportunity to “just enjoy” and truth be told, sometimes I’m just way too tired to “enjoy” and we’re left with just holding on and surviving through “this moment”.

Ah well, It is what it is and I refuse to beat myself up (too badly) over it all.

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I’m hiding

Judah is almost 7 months old. How is that even possible? Man!

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Peek-A-Boo! I see you!

He’s right at 27 pounds….typing that out it seems so crazy! And I have no idea how long he is…long enough to look WAY older than almost 7 months old. He’s wearing 12-18 month clothes. He is such a happy baby, unless he’s upset, and then……THEN HE’S REALLY UPSET!

He knows how to let you know that he’s not happy about something. There are no worries that he might get lost in all of the day to day chaos. No Sir! That kid communicates quite loudly about his wants and needs.

And…..He is mobile! GAWK!

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Up on all fours

He’s not crawling (normally) just yet, but I suspect that it’s any day now. He does get up on all fours and so I’m on the look out for when he starts to “crawl”. Right now he does this cute little army crawl and can get from one end of our dining/living room all the way to the other. We can’t just put him down on the floor and expect him to stay put. Nope! He is ALL OVER the place.

I need to get a video of him to show you. It’s SO cute!

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I’m so cute, aren’t I?

He can even sit for brief periods of time now. Man! This time goes by so SO fast.

We are so thrilled to have this darling little man in our lives. He is such a blessing to us and brings such light and joy to our lives.

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Shhhhh! Don’t tell anyone I can crawl or they might not pick me up as often!

More Homemade Presents

In some lighter, non-cancer related news…..I haven’t yet shared about the presents that Jeremy gave to his brothers and some of the cousins…..

These building stacker’s are AWESOME. Again, you can find them all over the internet, but I wanted to make some of our own and they were super easy and totally fun to make.

We made a few in the traditional rainbow shape…..

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And then, Jon made one that was a bit more free form and it is pretty cool.

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We have all enjoyed playing with these. You can stack them in so many ways.

You can have them laying flat on the ground…

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Ok, so that is a lame picture of them laying on the ground, but you can make cool designs with them laying flat….when I was taking pictures, I just didn’t think to make some to take pictures of. Silly me!

or standing up….

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You can create tunnels with them…..

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Our kids love to sit at the table and take turns seeing who can come up with the most creative idea. We have a few of them here at our house and it’s extra fun to use 2 or 3 sets to create these huge amazing towers and creations.

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I’ll see if I can get a couple of good shots of the kids and what they create with these simple stacking blocks. Again, we cut them from a hardwood (Maple) and sanded them smooth and finished them with flaxseed oil.

We’ve had a LOT of fun playing with these from Jon all the way down to Judah, who loves to see them all fall over and BANG onto the ground only to have us set them up again.

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They are 1.5 inches thick and at the tallest part, they stand 5.75 inches and they are 11.5 inches wide.

These are great sturdy toys and definitely spark creativity and the imagination.

Update for Monday January 17, 2011

So we are plowing our way through the second half of the 4th stage of Chemotherapy. This stage is called Delayed Intensification and the first half is a mini repeat of the very first stage of chemo that Angelica went through and the second half is a mini repeat of the 2nd stage of chemotherapy.

These two weeks that we are/have been working on are quite intensive. Angelica gets a Lumbar Puncture with some chemo injected into her spinal fluid on Tuesdays. She also gets another “heavy hitter” chemo med on Tuesday along with yet another chemotherapy medicine that she receives for 4 days in a row, Tues, Wed, Thurs, and Fri. She repeats this schedule for 2 weeks and then the last 2 weeks of this stage involve a weekly shot of a chemo drug called Vincristine and another dose of another chemo drug called PEG-L-asperiginase. The PEG is the one that gets injected intra-muscularly into both thighs….not fun.

If all goes according to plan and schedule, she should be starting the next round on February the 8th.

This current stage that she’s in can be a bit tough. Angelica feels quite icky after her “big” Tuesday of fun and that carries on as the week goes on.

The LP can give her a headache. The Cyclophosphamide can cause a whole host of nasty side effects and the Cytarabine (the one that’s given for 4 days in a row, 3 days off, then another 4 days in a row) builds up in your system the longer you take it.

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My life is “LEGO-RRIFIC”!

We’ve managed to make it almost through the entire first week. Tomorrow starts the second week of this treatment. Every chemo drug has a high point where the drug is at it’s most toxic, that is called the Nadir. The drugs that she’s currently hit their nadir at about 7-10 days. This means that the drugs that she received last Tuesday are starting to hit their high point. Because she’s taking the drugs on back to back weeks, the effects start to build on top of each other. By the end of this week/beginning of next, Angelica’s counts should be very low and may still be heading down for another week.

We would expect that her counts would be very, very, VERY low over the next two weeks.

One side effect of these current meds is that they can cause fevers. And, any fever is an automatic trip to the hospital. Another side effect of these meds is that her counts could go to low and sometimes when your counts are too low…..you can get a neutropenic fever. Again, with the free pass to the hospital…..

Obviously, we don’t want a free pass to the hospital. We don’t want a medically induced fever. We don’t want a neutropenic fever and we definitely don’t want an infection based fever. So we are praying for Angelica to stay healthy over the next couple of weeks.

Her spirits are high, and she’s doing quite well, emotionally. Her friends keep in contact with her and I’m so thankful that she has a couple of AMAZING girlfriends who are such a great encouragement to her. Geli is working hard to stay on top of her school work, most of the time…..she is a teenager and often would rather be playing on her iPod Touch than plowing through Socials homework. But she is doing really well….especially considering that she is in the French Immersion Program.

We are hoping that with the next stage of chemo that she’ll be able to attend a bit of school. She was able to go to school quite a bit the last time she received Methotrexate.

We have managed to stay out of the hospital since November and it’s been amazing. Not that our time has been all lollipops and roses, but it’s been so nice to attempt to have things as “stable” as they could be.

The stress level in the house seems to be a bit lower. Josiah has had probably the most noticeable change over the past 2 months. He is sort of sleeping better. He is not wigging out, as much. One of the nicest aspects…..he is no longer peeing himself 25 times a day. He went from almost potty trained to mostly completely not potty trained and now….he’s doing better than he was before the diagnosis. He has definitely calmed down a lot and I believe it has a lot to do with things being a bit more calm and stable around here. He is 3 and while that brings its own set of challenges, reducing the “crazy” in the house has really helped him to be at peace, which in turn helps us to be more at peace and for that, we are so thankful.

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Siah, just chillin’ in the sunshine….

Jeremy is just Jeremy and we are waiting for him to get some testing done in regards to his unique talents and abilities. His unique-ness allows him to be a bit self-focused and self-absorbed; and while his intensity feeds off the stress or peace in the house, for the most part, he is doing okay.

Xani is struggling. I’m not sure what to do. I’m not even sure how to talk about it all or what to do with it all. We had a good talk on the weekend and I’m hoping that it helps her some. Mentally and emotionally this is all a bit much for her and I think that the stress has caught up with her, physically. She’s been so sick over the past month. It’s just not normal.

We do have all the kids booked into see our family Doctor next week and it will be good to get a check up for all of them.

Jon and I still feel like we are going at a million miles an hour and these 2 weeks of treatment don’t really help with that. Often, the kids will all be put down for the night and we’ll have the opportunity to “spend some time together” and instead, we’ll just go to bed because we are just so tired. Going to bed at 8:30-9pm makes you feel like you are a million years old especially when you wake up the next morning and don’t feel rested. Ah well, it’s only a time, right???

We are slowly making our way through this. It feels like it’s been FOREVER ago that we found out about the diagnosis and it feels like we have FOREVER to go, but we are more than half way through that THAT is awesome!

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What? Do I have something on my face?

One day at a time and we’ll make it through this.

Thank you for standing with us and encouraging us and supporting us. We are so thankful to have you in our lives.