Month: November 2010

The Week Ahead

Angelica finished her last round of chemo a couple weekends ago. The next round is called “Delayed Intensification” and starts on Thursday. In essence its like a mini version of the first two rounds of chemo and lasts until the end of January. In the first round, she lost her hair and had to deal with blood-sugar (diabetes) issues, and she is on basically the same meds for the beginning of DI.

There are a few things that are different for this round of chemo. 1) There are less doses, 2) the time is a bit shorter, and 3) she doesn’t have leukemia any more. In the first round she had less than 5% of her marrow actually capable of making blood cells and so when something killed her blood counts, it took a long time for the counts to come back up. That fact also played a big part in how the drugs affected her and what side effects she had to deal with.

Right now, her marrow has recovered to over 30% (which might not sound like a lot, but in contrast to 5%, it is. It is enough to make a lot more blood cells a lot faster). So even though we have had these medications before, we don’t totally know what to expect.

We are praying and hoping that she doesn’t have to deal with more hair loss or diabetes or the shots and blood tests that goes with that. We are also praying that she doesn’t have her blood counts completely decimated and that her immune system remains intact.

Thanks to everyone who has been so supportive of Angelica and our family.

Getting Away from it All (part 2)

After lunch, we headed back to the hotel and even before we got there, the kids were already asking to go swimming.

So we all got our bathing suits on and headed back to the pool.

Me

I really was on this vacation – see?!?

The pool had actually been closed for maintenance and had just re-opened all clean and sparkly on the day before we arrived. Between that and the fact that we were the only ones in the pool the entire time we were there…..it was perfect for someone with a compromised immune system.

So Happy

Josiah was SO excited to be able to be swimming. He spent the majority of the time in the hot tub, and so did I. We typically would go swimming every week, but, back in the summer, we had to cancel our membership to the Walnut Grove Rec Centre because the pool is just not a great place for Geli and we didn’t want the other kids picking something up and bringing it home and so it was such a treat to be able to swim as much as we wanted for a few days.

Thrilled to be swimming

Jon and Jeremy and Judah hit the weight room before they came swimming…..

Working Out

I think this was the most exciting part of the weight room – for Jeremy…..

The draw of the Fitness Room

We don’t have cable and so it was such a treat.

So Happy

Judah worked on some push ups…..gotta build up that upper body strength, eh?

Girls ready to side

This is the 80 ft water slide that is inside the hotel. It was AWESOME! It’s almost pitch black inside the tube and you can get going pretty fast. It took a while and a little bit of coaxing, but even Josiah went down the slide.

Siah on the Slide

There were lots of smiles….

Wet Smiles

and a lot of silliness…..

Silly Faces

And SO. MUCH. SWIMMING!

Frog Boy

It was so amazing to step away from everything. To get away from our house, from school, from work, from cleaning, for deadlines, from everything and to just do something totally fun together as a family. After Swimming on Tuesday morning, Jeremy snuggled up next to Jon and looked close into his eyes and said, “Thank you Daddy. Thank you SO MUCH for bringing us here. This is the BEST EVER!” All the kids mentioned many times, just how thankful and grateful they were to be able to get away and to stay at the hotel and to go swimming.

Everyone relaxed and it felt like everyone was able to catch their breaths and de-stress a little.

It’s amazing how little time it took, once we got home, for everyone to try to pick up the stress again. Xani came to me panicking about school and homework and I actually told her that for that night, we were still on vacation and that she got to relax and take it easy and then tomorrow she could make a list of everything she needed to get done and to then start plugging away at it.

This is kind of where we are at. Times away like this are so precious, because we do kind of have this weight of stress that we are living under. It’s like our reserves for dealing with normal (stressful) situations are all gone and we have barely enough to just hang on in each moment. I know this is not forever, but it does wear on me to see it playing out in my children. Children are not supposed to be stressed like this.

But, not to focus on the negative…..our time away was so fabulous. So needed. Such a blessing. So fun…..it was simply amazing.

We are so grateful to Jon’s parents for coming with us. It drastically reduced the kid to adult ratio…we were only out numbered by one. It was a blast to hang out with and to be able to spend some time away with them.

All of Us

We are so thankful to the Super 8 in Aldergrove for giving us a great deal. We so hope to be able to come back again.

And we are so grateful that we were even afforded this amazing time away. Thank you, thank you, thank you. The opportunity to escape was such a gift.

If you are interested in seeing the rest of the pictures from our time away, click here...

Maple Taffy

So it’s been snowing ALL DAY and the kids came straight home from school today and I’ve not seen them inside yet….

I was trying to think up a fun snack for them and I wondered if it would be easy to make maple taffy and really….it couldn’t be easier.

You need real maple syrup and snow.

Okay, you need to boil the maple syrup first, but really that’s not difficult. Most of the articles that I read mentioned a need for a candy thermometer but I just winged it and VOILA…….

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You boil the maple syrup for a while. It needs to get over 260 degrees Fahrenheit and it needs to thicken up a little, so I probably boiled it for about 10 mins.

Then I took my pot outside and found some clean snow and using a spoon, drizzled some onto the snow. Then I called Jeremy over and asked him to eat some of my yellow snow – which he emphatically declined….until I mentioned that it was maple candy.

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Here it is in the snow….

And after a few seconds….it comes out more solid, like this…..

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And after you’ve taken a big, chewy bite, it looks more like this…

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It’s chewy like toffee but tastes like maple syrup. So Delicious and so easy.

Have you made this before? Am I just really behind the times?

(part 2 of “Getting away from it all” coming soon)

Getting Away From It All (part 1)

Thanks to the unbelievable generosity of some amazing people we were able to “get away” from everything for 2 days and 2 nights. It was so needed and so perfect for us.

We made plans to take the kids to the Super 8 in Aldergrove. They have a fabulous pool and water slide in the hotel. And that made this particular hotel so SO perfect for us. Our kids are the hugest water bugs that you’ve ever seen and we knew that they would love to go somewhere and swim as much as they could for a few days. It sounded like the perfect get away and in hind sight, it was! It was absolutely perfect!

We sent the kids off to school on Monday morning while we tried to get a few things done around the house and to ready ourselves to head out later that afternoon. Jon’s parents were up for “getting away from it all” and so they decided to join us.

At dinner time, we met up with Jon’s parents and we went for dinner and then headed out to the hotel. We got there, unpacked and took the kids down to the pool. We swam for over an hour and then headed up to bed. The next morning we got up and hit the complimentary breakfast. This hotel had the most amazing breakfast. Everyone enjoyed themselves and as soon as they finished breakfast, the kids wanted to head back to the pool.

Relaxin at Breakfast

Jon and Siah relaxing’ at breakfast

Xani and Geli were over the 12 year old age limit and so they headed into the pool – just the two of them – but the boys had to wait until I was able to take them into the pool. They were pretty patient through.

SO Cute

Judah got in some good cuddles with Nana.

Cuddles with Nana

After we finished a couple of hours of swimming, we headed up to our room to dry off and just relax.

We had picked up some fake mustaches before we headed to the hotel and in light of the whole “Movember” deal….we decided to try them out. I realize it’s not quite the same, but we had a lot of fun…

Even the Baby gets in on the action

Judah looked quite sweet in his “stach…..

Loving his 'Stach

Jeremy was throwing out his best Rico Suave vibe……

Looking Hot

Me and mah boy….rocking our ‘staches…..

Rocking it Hard Core

Geli rocks the teeny, tiny mustache…

Siah's Styling

While Siah sends out a little grey action….

Sibling 'Stach Love

Xani just ended up looking a little strange…

Even Nanagot in on the Action

We even convinced Nana to get in on the mustache loving…

The Men

And finally….here are my men. Looking so, SO sweet!

Playing

Looooooooong after the rest of us got tired of the mustaches….Jeremy carried on. He is SO cute.

Judah did pretty good in the hotel. He was happy and easy going. He did have some rough nights. And that meant that I had some pretty rough nights….which ultimately……SUCKED. But other than that….he was amazing.

Playing in His Chair

Xani and Nana pulled out the puzzles. We do love to do some puzzles.

The Puzzle Queens

After a bit, we headed for lunch….

Enjoying Lunch

Siah LOVES his ketchup. Basically, the fries are a tool to get the ketchup into his mouth.

Giggles

We had lots of laughs and giggles and after lunch, we headed back to the hotel for more swimming……..

(stay tuned for part 2)

Can’t Hear the Truth For All the Lies

This is a tough season in our lives and I think that’s putting it mildly.

I don’t understand and I’m not really even trying to understand “why” this happened to us. I’ve found that for me, there is no good that come come from sitting, pondering, feeling sorry for myself and our family and embracing the misery and loneliness of the “why’s”…..to do so only drags me deeper and deeper down into a pit and once in that pit, it’s a thousand times more difficult to get back out of. It’s much easier to claw and scramble and to do everything in my power to stay out of the pit in the first place.

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I don’t feel amazing. I don’t feel like I’m doing very well. I do feel like I’m exhausted. I do feel like I’m walking around with cement boots on. I do feel like I’m processing through mud or honey and sometimes, it all feels completely overwhelming.

It’s a good thing that I not choosing to live my life based on my feelings. I’d be in quite a pickle if I were living solely based on how I feel on a day to day basis. (mind you, this is an everyday moment by moment choosing, not necessarily a blam! – now it’s done and all’s well forever and a day kinda thing)

A friend of mine is going through some “life crap” of her own. Everyone has “stuff” that they are dealing with. Life’s not perfect or easy, is it?

I sent her a message the other day, you know…..to encourage her…… asking her “what the truth for today was?”

As soon as I hit send, it hit me like a blow to the chest…….WHAT WAS MY TRUTH FOR THE DAY?

The truth is….I am strong enough to handle this.

The truth is…..I am capable of putting one foot in front of the other and continuing on each morning.

The truth is…..I not going to die because of an overload of laundry….get it….overload.. Ha Ha (well, I thought it was funny!)

The truth is……I will make it through this. We will make it through this.

The truth is…..I might be tired but I am getting some sleep AND if I really need to, I can call someone to help me.

The truth is……We’ve been so blessed in this whole process.

The truth is……Angelica is doing SO well for someone who is going through what she is going through.

The truth is……The kids are and will be okay and in spite of all of this, they will still be amazing members of society.

The truth is…..the truth is…..the truth is…..

Sometimes I get so bogged down in my feelings and I don’t feel strong enough to look past my feelings to see the truth of my situation.

This is a kinda crappy time – that’s not a lie, but inspite of the crapiness……

The truth is……there is a whole lotta good, a whole lot for us to be thankful for, and we have been so blessed and supported throughout this journey.

We will make it through this time and whatever you might be going through…..you will make it too!

Temporary ADD

I’m so frustrated right now. I mentioned this yesterday, but it’s true.

I’m aware that we are dealing with a lot and yet……even knowing that, doesn’t change the fact that I’m frustrated because I’m not functioning well.

Typically I can accomplish a certain amount of things, I can make mental lists and not forget details. I can “see” the lists inside my brain and don’t even need a “paper list” or to use my Blackberry. I can remember dates and names and phone numbers and cross reference them inside myself. I hear Jon talking about his appointments and I can process and integrate all his appointments with our family calendar and pull up vague references and details at will……Reading all of that back, I sound a bit like a machine……but a super, awesome, shiny, sparkly, friendly, super cool machine, right???

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Now imagine that machine with glue or honey poured into it. Yah, that’s how I feel!

I’m aware that I used to be able to function at one level and I’m annoyed that I cannot currently function at that level…..especially when that ability to process and accomplish could be SO USEFUL in our lives right now.

I have to write out lists or whatever I was thinking about…..GONE!

I even have a notebook, so that I don’t end up with 50 scrap pieces of paper, as that would just be more to lose or misplace.

It’s really bad when I can’t remember where I put my notebook and by the time I do locate it….what I was going to write down……GONE!

And then if I take the time to sit down and concentrate about what I needed or wanted to write down….I might remember 3 or 4 things that I had previously wanted to write on that list and had forgotten about but there is always that one thing niggling at the back of my mind that I know I’ve forgotten about. I think that knowing that I’ve forgotten something makes it worse, for me.

And then if I go to accomplish what’s on my list, without fail, I’ll finish what I’m doing and remember what it was that I forgot. Especially frustrating when it’s an out of the home activity that I’m trying to accomplish.

So Annoying!

I’m messing up dates of appointments, and am so far behind on e-mail and “the administration” of my house…..GAH! People say they’ve told me things and I have no recollection of it. NONE AT ALL!

I’m even……..GASP!!!!!! Inefficient these days. I hate being inefficient.

I LOVE BEING EFFICIENT! I’m sitting here trying to come up with a picture to explain just how amazing ,being efficient makes me feel and I’m aware how much time I’m wasting because “the words” just aren’t there. That fact is frustrating too.

It’s ALL frustrating. I try to see how this could be good. I believe that you can learn from most things in your life. I believe that, most of the time, you can take something good away from even the bad things in your life. And so even in the middle of my frustration, I ask myself – WHAT CAN I LEARN FROM THIS?

Yah, that’s probably pretty honest too….I’m probably screaming it out just like that, except……you know…… inside myself….because…well, I don’t want to scare the children or any small animals that might be close by.

It doesn’t take the frustration away or make any of this easier, but………

I can be more compassionate to those for whom “organization” and “administration” is not a strength. *ahem* Jon *ahem*.

Being serious though – compassion, patience, understanding, grace and mercy……these are all areas that I can grow in, be more aware of and learn from this situation. Because right now….these are all things that I’m needing from others and if I’m totally honest, from myself.

But…it doesn’t make it any easier and I’m still frustrated.

But it does make me stop and think….what are others going through? That girl in the line in front of me who’s staring off into space when she should be running her groceries onto the belt…..Instead of thinking about how she’s so slow or how I managed to pick the ONE LINE with the SLOOOOOOOOOW person – I want to think to myself…….What’s consuming her and why? The guy who’s driving slower than the posted speed…..instead of being mad that he’s making me late….I want to wonder why he seems so distracted? The lady in the store who’s kids are maybe just a bit too loud? Why does she seem so tired and run down? That person who was supposed to call me back and didn’t….Instead of thinking they were inconsiderate….maybe they got too busy or just forgot?

You never know what other people are going through. If there is anything I can take away from this…..

I want to be more compassionate.
I want to have more patience.
I want to be more understanding.
I want to have more grace.
I want to have more mercy.

Just being honest……….I’m still frustrated though!

Creating Saturday’s

Geli actually cleared her Methotrexate from her system by the 48 hour blood draw but had to stay until hour 56 to get the last “rescue” medicine….

This means that she cleared the chemo from her system (down to below the acceptable level) within 24 hours. AMAZING!

Technically, she was allowed to leave the hospital after the last dose of her rescue med…..which needed to be given at 11:00pm on Sunday night. There was a lot of excitement about possibly being able to go home and sleep in their own beds, and some concern that it might be too late at night and might just cause more upset and stress (on Geli) to try and rush and leave in the middle of the night. In the end, the call of their own beds won out and they chose to leave at 11:30pm.

Jon’s parents – ever so wonderfully – picked Jon and Geli up from the hospital at 11:30pm and drove them home. It was so nice to have them home, even if it was just a few hours earlier than planned, and even nicer to not have to drive into town. Especially with that 8-10 car pile up on HWY 1 this morning. YIKES!

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Kicking the Fall Leaves

Jon and I and the kids got up a little late and were quite slow this morning. Geli slept in. Xani and Jer were already to go to school….breakfast eaten, clothes on, back packs packed, lunches in backpacks, even shoes on….and then Xani melted down. I’m not sure what the exact problem is/was…whether she was overtired. No one seems to sleep well when Geli’s in the hospital. Or if she just really missed Jon and Geli…well, to be honest, I have no idea what the real problem is/was and at this point I’m not really interested in delving too deeply.

I was a bit surprised that she was upset and crying, even though I shouldn’t have been.

Jon took Jeremy to school. I sent Xani upstairs to sleep, and when I went up 10 minutes later – she was snoring loudly. Obviously needing some extra sleep. Within an hour, Jeremy was calling from school crying about not feeling well and needing to come home and so Jon went to get him.

By this point, I just figured that we were going to have the “Saturday” that we didn’t get to have. We’d do what we needed to. Hang out. Have a slow, down day TOGETHER and then get the kids off to bed at an early time and start fresh on Tuesday. We’d just skip Monday, cause who really likes Mondays anyway, eh?

Just before Jon got home with Jeremy – who was fine….just needing some family time – Geli woke up and was feeling really REALLY good, comparatively.

We had a great day and even were able to think through some of the kids Christmas presents to each other and to their cousins. Our goal is to get everything done by the first week of December and then to be able to relax…….

HA HA HA HA HA HA! Relax! Okay, maybe I’ll just say…….. to be able to cross one thing (Christmas presents) off my list.

By now, it should come to no surprise to me that right now, in this tage of our lives, our family really needs to be with each other after a weekend away. I, in my adult thinking, know that they are only gone for just a few days and that Angelica’s not going in to the hospital “sick” and even with my knowledge and maturity *snort*….. I know how much “I” look forward to them being home and having some time “together”. And yet I’ve kind of just expected the kids to just keep trooping on as if everything is status quo.

I still think that anything that we can do “as normal” is a good thing, but that I need to be more prepared for when the kids indicate (through words, actions, or emotions) that they need a “family” day. It wasn’t a problem to keep them home and I think that it was right to send Jeremy until he asked to come home…..I just hadn’t thought through the possibility of them needing us to be together. “Together” was exactly what we needed.

Fortunately, this is her last “scheduled” hospital stay and for that, we breathe a sigh of relief and thankfulness.

It was a nice day. One that could have been better had I just thought through the different possibilities a little more……

This “whole thinking things through clearly” is really frustrating me right now…..but hey, today was an awesome Saturday!

JUST AMAZING

I love my girls. They are both turning into such amazing young women. Angelica is dealing with cancer treatment and being so brave (and winning) and Alexandra is showing such maturity in dealing with the changes at home. (And I really really really love Patti.)

Angelica is already a teenager and Alexandra is right on the doorstep, and this brings a whole new set of parenting challenges. I’m not freaked out about parenting teenage girls, but I am aware of what the world is like for them.  I make a point of watching the shows that they watch and we still get copies of their incoming e-mails. I want to know what messages they are receiving and how they are processing those messages.

The messages girls receive seem to be complete opposites. There is so much opportunity for women today to rise up and be as successful in any field as they desire, and the examples of successful women in business, politics and at home are easy to find. At the same time there are more messages in mainstream media that show girls in relationships that are at best demeaning… In most cases it seems that cheap meaningless physical relationships are the norm and I hate this! The message seems to be that what is inside has value and tremendous opportunity, but what is outside is not good enough, not valuable and not deserving of faithful devotion.

I want my girls to believe that they can be successful and at the same time they deserve to be respected in their relationships (not that they should be dealing with relationships yet), and that there is nothing meaningless about them, their bodies, or their feelings. (I’ve got a whole different post to write about the standards I want my boys to rise to as they become men gentlemen).

I can say a lot of words, but finding examples of this message in the real world is a harder task. It’s not that these messages don’t exist… Last year there was an episode of Bones where one of the main characters was talking to her daughter about relationships and sex. It was an exceptional conversation, completely accurate and a scene I would like to show my kids.

I heard this song on the radio a few weeks ago and I instantly fell in love with it.  I dedicate it to all my girls. Patti, Angelica, and Alexandra… You are AMAZING, JUST THE WAY YOU ARE:

Another Beginning….one step closer to the end.

I dropped off Geli and Jon at BC Children’s Hospital this morning for her final dose of High Dose Methotrexate.

Here she is decorating her room for her 3/4 day stay…..

BCCH Room

you can click on the picture to see a bigger view

The way this whole 3-4 day thing works is that she shows up around 10am-ish on day 1 (today – Friday) and then gets hooked up to an IV and starts pre-hydrating. She has to hydrate for 6 hours and then the Chemo will start (at approx 4pm) and 5 liters of the medicine will flow into her over the next 24 hours. At 4 pm (approx) on Day 2 (Saturday) they will finish the Methotrexate and then take a blood test to determine the level of the drug in her body and they’ll start to administer the antidote. Based on how she’s done the last 3 times, she should clear the Methotrexate from her system by Day 3 (Sunday night) just before midnight and I’ll head into to pick her and Jon up on Day 4 (Monday) around noon-ish.

So, the kids and I are headed into our last “planned” weekend apart for the duration of her treatment. I’m hoping it passes by very quickly.

We had a GREAT talk with Tim, Geli’s Oncologist, today. He answered a bunch of questions and while we are not yet even at the half way point in this first intense stage of the treatment – we can definitely see that there is an end to this whole journey.

We have 3 stages left before Maintenance. Each stage is 8 weeks long. The first of these stages is basically a mini version of Induction (the very first Chemo treatment) and Consolidation (the second set of Chemo). The second stage is another set of Methotrexate, but instead of getting a dose of 5,000mg of Methotrexate – she gets 50mgs the first week, 100mgs the third week, 150mgs the 5th week and 200mgs the 7th week……that seems so insignificant compared to 5,000 milligrams – doesn’t it? The third stage is another mini repeat of Induction and Consolidation, with the added bonus of Cranial Radiation thrown in.

That should take us up to May-ish 2011 and at that point we start Maintenance…….which we continue on with until September 30th, 2012 or there abouts.

So we are still quite a long ways off, but as horrible as it is, there is a familiarity to these treatments (minus the radiation) and we are expecting Geli to respond quite well. Her counts are expected to be quite low still and there are still a number of appointments that will take us in and out – so we are not quite into the party stage of things just yet.

Despite, the length of time and treatment yet to go, its just so nice to walk away from a meeting feeling positive & hopeful and not stressed & discouraged.

Geli is doing well, and her spirits are up. Her Homebound teacher has mentioned that Geli is doing extremely well and is handling the whole “school & home learning” really well. She is staying on top of her schoolwork and really enjoying participating in class, as she feels up to it.

Her toes, that had caused her so much trouble, have been doing SO. MUCH. BETTER! The ingrown nails had pretty much grown out and the infection was pretty much gone and then two weeks ago she stubbed her big toe and chipped a GIANT chunk out of her big toe nail and now we have been attempting damage control to hopefully prevent any ingrown toenail and subsequent infection.

It’s quite possible that her hair might fall out again in this next round. One of the drugs that she took in the first round is the main culprit for the hair falling out last time and she’s up against it again and so we shall see what this next stage brings. We’re expecting her to have a better time around this second run through this treatment because instead of her bone marrow being full of leukemia cells she had (at last count a few weeks ago) just over 25% of normal cells.

So basically, her marrow was full of leukemia cells….they killed all of those off and now the good healthy strong cells are taking back ground. This is a very good thing.

It looks like we’ll have the week between Christmas and New Years off of treatment and we’re looking forward to that.

Thanks for all your prayers, love and support. Once again, we are so grateful and thankful for you all.