Kissing Fish

This morning we woke up and had some breakfast and then I made a spur of the moment decision to take the kids and get outta the house and head to the Vancouver Aquarium.

I remember going with my parents and all five of us kids and we would walk around the Aquarium for HOURS looking at the fish and writing down the different ones that we saw and liked onto little pads of paper. Now that I think about it, it was a little bit nerdly, eh? Oh well, what we really need to bring are the older kids iPods. Jeremy was desperate to use a camera and I didn’t want him to use up all my battery. But when he did manage to snag it from me….he was in such a hurry that all his shots……BLURRY! I had 40 blurry fish photos on my camera. It was pretty fabulous!

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When Geli, Xani and Jer were little, we had a membership and I remember taking the 3 kids and heading down one of the exhibit corridors and the nicest thing was that they dead ended so as long as we were behind them….they were safe as there was no where else to go.

Things have changed SO MUCH at the Aquarium in the few years since we’ve been there but it’s still a fabulous experience for the kiddos.

We got ourselves a membership, now to just find some “down time” when there aren’t a million people flooding through the halls.

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The little boys LOVED looking at all the fish and I can’t wait to take them back to see more “fishys”.

Beach Days

On Monday morning, the kids and I decided to pack up and head out to the beach.

We threw together some food and grabbed our towels and blankets as well as the beach toys; jumped in the van and headed out to West Vancouver.

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I love Ambleside Beach. Apart from the fact that I grew up there, its so easy to navigate with a hoard of children and gear in tow. You park and then walk across the driveway and onto the beach. It’s just right there. Which is SO nice when you are schlepping children and way to much stuff.

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When we got there, it was gorgeous and sunny and EXTREMELY WINDY which made it also…..quite chilly. Which is not exactly what we were expecting.

I was SO THANKFUL that, at the last minute, I had grabbed my sweater. I would have been FREEZING without it.

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The beach wasn’t packed, but neither was it empty. There was a HUGE number of half naked kids and about half as many completely wrapped up moms.

We laid the blankets down, the two little boys kicked a bucket load of sand onto the blankets and then took off to play. It was so nice to just sit and watch them play.

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No worrying about them making noise or touching things that they shouldn’t. We are having some issues with the Strata in our complex and basically they are trying to impose a “children should be seen and not heard” policy which as you can imagine is not going over well with the parents in the complex….especially seeing as we do not live in an adult only complex. It’s made for a stressful spring/start to summer.

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I’m praying for an amazing opportunity to be able to buy a “home” not a townhouse and on a piece of acreage would be even more incredible.

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We hung out for a couple of hours and then……we decided to pack up and come home. It was just too windy to enjoy the beach. If the kids tried to play in the water they were frozen little popsicles because of the wind.

Jeremy even dug himself a huge hole/trench so that he could sit out of the wind.

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After we ate lunch, the kids got popsicles from the concession stand and then we packed everything up and came home.

It was a fun adventure and one that we will do again….although hopefully not on such a cool windy day.

Once we got home the baby crashed hard. I love it when they play so hard that they pass out. He looks so little here. Hard to believe that he turned 2 on Sunday. The time goes by so fast.

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Looking Back

This is a post from this day last year. Just reading the post I can feel all the emotions from a year ago. It’s hard to believe that it was only a year ago. It seems like AGES AND AGES ago…..we’ve come so far……

Exhaustion and Low Counts
Posted on June 8, 2011 by Patti

I’m tired.

I’ve started exercising again and while I know in my head, that in just a very short time, I will have more energy….at this exact moment I’m SO tired!

My legs hurt. My stomach hurts. My shoulders hurt. Stupid muscles in my neck that i didn’t even know that I had hurt! I hurt!

I know that the end result will be a definite gain in my life, but for the immediate…I’m tired!

Other than that, I’m doing well…..so enough about me.

Angelica has done 2 out of the 4 doses of chemo for this week. She went in yesterday and based on how well she seemed on Monday with her friends, we were expecting a short in and out. She had an LP and after that she needs to lay down for about a hour, but they could give her the chemo and so while her appointment was for 8:30am, I expected them home before noon.

The whole morning just kind of went screwy. The traffic was BRUTAL and it took them over an hour and a half to get in. Then is took a bit for her to get in for the LP. While she was sleeping off the sedative, Jon got the results of the blood work and her Hemoglobin was at a 72. This was a fair drop from the 95 that it was on Friday. Typically around a 70, Geli has higher blood pressure, a faster heart rate, feels like she just cannot catch her breath, has a hard time moving around and definitely has trouble going up or down stairs. Aside from her heart rate being slightly elevated, she was doing fine, but….seeing as her counts are just heading down, down, DOWN…. They ordered a transfusion and there began one of the LONG clinic days. The blood didn’t even get to the clinic until after 1pm and they didn’t get her hooked up until 1:30pm. It takes about 3 hours for the blood to run and so they didn’t even leave the clinic until 5:30pm and then there was the hours drive home.

If we are prepared for a long day it’s less stressful than when we are kind of blindsided with it.

All of her counts are headed south. There is a good chance that she will have low to NO infection fighting ability for most of the next 3 weeks. This is a bit scarey and I’m asking for prayer to really cover Geli and us during this time.

Obviously, we can handle anything that we have to…including a long hospital stay, but we don’t want to have to.

We’d just like for Angelica to stay healthy and strong.

There is a good chance that she’ll need another transfusion either Friday or Tuesday and she’ll most definitely need platelets before she gets the intramuscular shots on Tuesday. It looks like we’re in for a few long clinic days over the next little while.

We’re looking at the finish end and just needing the strength to stay strong until this “intensive” phase of treatment is over.

This entry was posted in Cancer Sucks, exercise, Gelica. Bookmark the permalink. Edit

Trying to Hold On

It’s been a long two years and I’m finding that I’m at the end of myself.

I’m tired. I’m exhausted. It’s more than just an “I have a 2 year old who wakes up at 5am” tired….

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Napping yesterday with Judah

It’s more of an “I have no idea how I’m still standing but I must carry on……” kind of tired.

I have no energy to call anyone or reach out to anyone or respond to e-mails….in fact, I am spending a ridiculous amount of energy just attempting to put these blog posts out there.

I want to be able to “DO” things, but I have no reserves left to draw from.

There are things that bring me life and although there is a small part of me that desperately wants to do these things……I don’t even really want to do them….and yet I do, in the hopes that I will be able to remind myself of who I was before “ALL OF THIS” happened.

And so, I make soap……which exhausts me and requires that Jon be there to walk me through it because I’m scared that I’ll make a mistake, forget something and wreck it. Something so stupid as following directions and mixing ingredients….much like making a cake……wrecks me. And says a lot to me about where I am at….

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And so I blog, even though I have to think and think and think and then delete; because what I’ve written isn’t what I want to say…….and that makes me feel so stupid because normally I LOVE WORDS. I love to be able to use words to share and encourage and inspire and even something that is normally first nature for me, requires a ton of effort…..and that says a lot to me about where I am at…..

I’ve been seeing a counselor for a while now because I want to feel better and in some ways I am, but it also feels like the more that I acknowledge how tough this journey has been and is….and the more we walk away from the intensely stressful times, the more difficult it is to hold myself together and continue carrying on. It’s like I’ve been living on adrenaline for the past two years and that alone is exhausting. The stress has done a number on me both physically and mentally.

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Someone’s having a sick day today. Middle of the night barfing sessions are NOT cool.

About 2 weeks ago, I said to Jon that I really needed to get away. Like, for my overall well being, I needed to get away. I’ve not wanted to “go away” because there were too many things that were unstable and the kids needed us……but I’m in a place where if I don’t get away….I feel like I will break down beyond what I can continue to hold together. I already feel incredibly broken.

I feel like, if I were a wagon….I used to be useful. I could carry many things and heavy things and now…..now I have a giant crack running through me and my wheels are broken and the straps and connectors that hold me to the “life” that is pulling me forward are so compromised. I feel like I’m sitting some place not useful or good for anything. And to be honest….it’s a horrible feeling. It’s a horrible feeling to feel like you HAVE to do things and to physically make yourself do things, like cleaning and laundry and meals and yet to not have the energy to do them. I don’t mean that in a flippant way, but literally….every time I do something, I am taking more and more out of my very being and there is so little left…..

I feel like this sounds so dramatic, and in someways I worry that it may come across the wrong way and yet…..to be honest, I don’t even have the energy to really get a good “worry” going on. Which in some ways, I guess is good, because we shouldn’t worry, but in other ways, it says a lot to me just about how rough of shape I am in because although I shouldn’t admit this….I have been a champion worrier in the past…….

Jon has booked some time away for us. Just he and I are going to Cabo at the beginning of July. It’s officially less than 30 days until we leave. I am so looking forward to a week of nothing. No responsibilities….no cooking….no cleaning….no one wanting me or needing me or taking from me….

I’m planning on sleeping and sleeping and sleeping some more. Sitting in the sun. Eating. I will probably cry….grieving all we’ve lost. And then I will come home; and I hope & pray that I will have a bit more to give, because I have ones who require it of me.

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Waking Up Happy

The Countdown is On…

This past Monday we were in at BC Children’s for another monthly chemo appointment. As of today, Angelica has 4 more monthly chemo appointments left until she is finished taking chemo and only 1 of those appointments will have a sedation procedure. This is SO exciting.

There is not that much that is new or interesting about the actual chemo appointment itself! Angelica goes in. They admit her and draw her blood. They give her the chemotherapy and then we see a Dr. and go home. At this point, as long as I don’t think too closely about the poison that they are giving her, it’s all very routine. I know that it’s a necessary evil and I’m so thankful that we are here and can get the medical help, but it’s still tough…..and that’s never changed from the day that she was diagnosed until now….

What’s been different about the last few appointments has been the issues regarding the bones. The news of Avascular Necrosis/Osteonecrosis has been tough. Dealing with how much constant pain Geli was in was so hard. She had a hard time walking, moving, dressing, doing her hair, bathing……Life was pretty tough and every report we were getting was pretty much preparing us that life would pretty much be like this and possible worse…..

Things started to change after our appointment with Dr. Brown the Pediatric Surgeon at BC Children’s. He gave us news that we received as god news….as positive news and in the middle of all the crap…it’s what we needed to hear.

Angelica is doing so much better. It’s not all butterflies and roses, but she is in less pain. She’s tired and her muscles are sore, but she is working SO HARD!

Geli is doing about an hour and half of physio a day…….on her own…..or mostly on her own…

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It’s pretty incredible. She is doing exercises 3 times a day – morning, after school and before bed. It’s making a HUGE difference. Instead of walking around like someone who is 90 years old, she is walking and standing more like a teenager. She is standing straighter and walking straighter. While there is still a bit of a wobble in her step, she looks AMAZING!

It’s exciting to see how far she’s come. Sometimes, it’s hard because she can’t see the change, but to us, looking at her and seeing what she can do now that she couldn’t do a month ago….the changes are astounding. For example, she couldn’t stand up in the kitchen to help with dinner or dishes for 15 minutes without being in pain and so tired. Now, she can do at least an hour. On Monday, she had the sedation procedure with the chemo into her spinal fluid (a Lumbar Puncture) and there has not been one day in the past 2 years that she has done anything other than lay around on an LP day. On Monday, she wanted to walk up to the store a few blocks away from our house to get something that she really wanted for dinner. It blew me away. So SO much different than a month ago……she also has SO MUCH MORE range of motion in her shoulder and elbow and it’s making a difference in the daily living things that she is able to do, like reaching for things up on shelves in the kitchen and doing her own hair.

She still requires help, but all of this change…..it’s only after ONE MONTH of exercise…..The physiotherapist at the hospital said she was doing incredible and our nurse COULD NOT BELIEVE how amazing she looked even all groggy after having the LP. She looked healthy and happy….in fact, more than a few nurses mentioned how great she looked.

It’s so great to see positive change and forward movement in this situation. We have our next appointment with the Orthopedic Surgeon on Tuesday June 14th….I’m looking forward to Geli going in and being in better shape than she was the last time.

One other AMAZING bit of news, is that the Physiotherapist at BC Children’s suggested that Angelica go THERAPEUTIC RIDING…..as in HORSE RIDING. Any of you who know Geli, know that she has been in love with horses for as long as we can remember. I have lost count of the number of horse calenders, horse bedding and other horse paraphernalia that Angelica has collected or wanted to collect over the years. To say that she was a horse fanatic is putting it mildly. Unfortunately, horseback riding has not been something that we’ve been able to do, but it has been something that Geli has wanted to do forever.

To have the Physio suggest that as another form of physio that Geli could go riding…..well, it’s pretty huge. Just talk to Geli about it and see the smile on her face when she talks about it….she has this amazing smile that just lights up her WHOLE ENTIRE FACE. She is SO excited! We’ve contacted the stable that does Therapeutic riding out here in Langley and have sent out referral forms to her Dr.s to get them filled out and as of last night we received them back so now we forward them to the stable and then set up a time and …………she starts riding.

What an amazing opportunity that is so perfectly picked just for her. What a blessing! We can see God’s hand in this.

There are other emotional side effects from this whole journey that we are working through and it can be tough at times, but there are a lot of things that are going so well. We keep praying and believing for miracles for Angelica’s physical body. It is so encouraging to be at a place where she rarely feels pain as opposed to the constant pain that she was in.

Thank you for your prayers, your encouragement, for your love, for your support. We couldn’t have done this or carry on without your support. We are so grateful to all of you.