May 2011 – xangelle.com

Radiation – The Good and the Bad

Well, when Geli was diagnosed with Leukemia, we were given a schedule of the chemo that she would receive for the first month. After the first month was finished, we were given the schedule for the remainder of the treatment period. As I read through the material, I got to the section that talked about cranial radiation.

I wondered what all that entailed, but there was SO MUCH information coming at us and it was almost impossible to absorb it all. I’ll admit that I was nervous and concerned about the radiation, but I quickly brushed it off as we were looking at almost a year down the road before we’d have to deal with it. And so we carried on.

Back in January, I started to think about the Radiation again. I started to look into what exactly was going to happen. It was pretty scarey. And once I realized that I was scared just thinking and reading about it, I started trying to figure out a way to explain it to Angelica and the kids that would make it seem less scarey.

When the kids were little and we’d watch a Disney Movie….as soon as the villain came out as being overtly scarey and evil, my kids would be done with the movie. They’d run from the room, yelling and carrying on about how they didn’t like that movie….the worst one was The Little Mermaid Movie. I didn’t want my kids to be scared of something as stupid as a movie and I didn’t want them to give up on every movie that we watched just because there was a part that seemed scarey as first. I wanted them to see that often when we carry on through the “tough” times, there is a good chance that in the end, we will win or triumph over the situation.

And so I’d go and get them, I’d talk about the villain and how nasty they were and then I’d give away the ending. I’d talk about exactly what was going to happen and then I’d make them come and sit on the couch with me and I’d TOTALLY WRECK the rest of the movie. Scene by scene, I’d tell them what was about to happen and we’d finish the movie off that way. As soon as it was over, they’d be asking to watch it over again and over and over and over again….it was no longer scarey because I’d taken away the element of surprise. Knowledge is power and I decided to use that same approach with the radiation.

I explained about how she would need to go in before the radiation treatments to get a mask made. How they would lay her down on a hospital table and drape this material over her head and face. That it was kind of a breathable mesh, and that it would be pliable but would harden into the perfect shape of her head and face. That it would take about an hour to make this mask thingy. When it was time to get the radiation on her brain, that she would go into the room, lie down on the table and they would attach this mask onto the table so that she could not move. Because when you are dealing with radiation, you don’t want to make any mistakes and end up with the radiation going somewhere where it shouldn’t go….

It would take about 5-10 mins for her radiation treatment and during this time, she would be in a room strapped to the table and the radiation machine would move slowly around her sending waves of radiation into her brain to make sure that there were no stray cancer cells in her brain.

If she happened to have any hair left at this point, she would lose it and it was possible that she’d end up feeling like she had a sunburn on her scalp.

I explained this all trying very hard to not frighten the kids, but to make it all very matter of fact and yet, I was nervous. I just kept thinking….do we have to go through with this? She’s never shown any indication that her brain was involved and she’s had the chemo injected into her spinal fluid? Isn’t there something else that can be done?

Now, I had read a lot of material at this point and some of it confused me. There was conflicting information on whether or not cranial radiation was necessary or even beneficial in kids who had never had cancer show up in their brains. There was information about how in the States children with Leukemia who showed no signs of cancer cells in their brains didn’t need to have the radiation treatment. It seemed like the long term side effects of the radiation were actually worse than the possibility of a chance that you might end up with cancer cells in the brain.

Jon went in at the start of this last stage and our Dr and nurse talked to him and explained some about the radiation and how it seems in Angelica’s case that the radiation was unnecessary, but that we’d have to actually meet with the radiation dr. to discuss the whole scenario. An appointment was made for a week later and we started talking about the whole situation between ourselves. We weighed the pros and cons and in the end we decided to opt out of the radiation treatment.

Jon was fully prepared to stand for our decision to the Dr and yet when he got there, she explained all the benefits and ALL of the side effects and in the end, there was no need to “stand”……the decision was just made, in Angelica’s best interests, to not go forward with the radiation.

In Geli’s case, the slight possible benefits to having the radiation are grossly overwhelmed by the negative side effects and as of right now we see no need to put Angelica into that kind of a position.

We have such a peace about having this portion of her treatment cancelled. We were willing to go ahead with it, if it was absolutely necessary, but I was not excited about it. To get to this stage and to have that worry or concern removed from our lives is such a HUGE blessing.

And so TODAY we start the last 4 weeks of treatment……we are counting down and we are so excited about it.

28 days…….

Max

We had a Family Breakfast on Saturday.

I love it when we get together as a family. And when there’s food involved….it’s even better. Seeing as Breakfast is my favorite meal of the day, it only makes sense to have everyone over for breakfast….eggs, hashbrowns, bacon! MMMmmm, BACON!

After breakfast was over, I pulled my camera out because I wanted to get some pictures of Max -Tim and Daisy’s little guy and the newest member of our family. He is absolutely just the cutest little guy ever!

He is so relaxed and content. He has these HUGE eyes and he just takes everything in.

It’s hard to believe that Judah was that small once. I LOVE this tiny, newborn stage when they eat and sleep and poop and eat and sleep and poop; and you can just cuddle and snuggle and hold them all the time.

And he’s just starting to smile……look at that little grin.

Congrats, Tim and Daisy! He’s beautiful and we love him and you both, so much!

You can see more super cute adorable pics here.

Cauliflower Pizza Crust

I feel better when I don’t eat flour. I love the things that I can make with flour and yet, when I eat too much flour….I just end up feeling bloated and gross.

Last week, my sister and I decided to support each other in our healthy food eating habits. We were feeling a bit off and knew that if we were accountable to someone that we’d have a greater chance of eating responsibly as opposed to just popping whatever was in front of ourselves into our mouths. So far it’s working. I am less bloated, feel more energy, feeling less sugar cravings and well, I’m just feeling better all around.

Basically we are eating 3 meals a day – no snacking in between. We are eating no sugar, no flour, no dairy – just sticking to whole foods. I think that we might shake it up this next week and do 2 smaller meals, 2 snacks and one larger meal. Neither of us are loving feeling like we need to stuff ourselves at each meal so that we’re not hungry in between meals. I’d rather just plan to eat some veggies or fruit in between meals instead of fighting the hunger.

I had made up our weekly meal plan before I agreed to start this with Debbie and PIZZA was on the menu for Friday night. I could have just had something different, but I remembered that I had heard of a Vegetable Pizza Crust somewhere before and so I went searching.

I found this recipe and with a few variations, I decided to try it.

I used 1 cup of grated cauliflower, 1 egg and 1/2 cup of goat mozzarella, 1 tsp of garlic powder, 1 tsp of oregano and 1 tsp of basil.

You mix all of the ingredients together and mix really well. You end up with something that looks kinda like this…..

I got a piece of parchment paper and spread the mixture in a pizza shape (otherwise known as a circle).

I used my fingers and a rubber spatula to spread it all out. Mine was about a quarter of an inch thick. I popped it into a pre-heated oven that was set at 450 degrees Farenheit and waited for about 20 minutes or so….until it looked like this….

It needs to be cooked until the edges have browned. If you cook it just enough, then the crust will hold together and you can pick it up and eat it with your hands just like a pizza. If you under cook it, then it will be a bit sloppier and less easier to handle. (Just a friendly, helpful little tip)

I had found some Organic Chorizo sausage at Organic World out in Maple Ridge. Lots of the regular pressed meats have chemicals and wheat in them and as I’m trying to avoid those ingredients, I was happy to have found a spicy, healthy and very tasty option.

I put a thin layer of tomato paste, topped it with the Chorizo Sausage, some Goat Feta, Red Peppers, Kalamata Olives and finally some Goat Mozzarella. Just before I put it in the oven, this is what it looked like….

This is what it looked like after it had cooked at 375 degree Farenheit for a few minutes until the cheese had melted….

Doesn’t that just look delicious?

The kids had been commenting about how good the house smelled…kinda like Parmesean Cheese toast and while it did smell and look pretty darn amazing – I will admit that I was slightly concerned that it would taste less amazing than it looked.

I needn’t have worried. It was DELICIOUS! SO Yummy! I will definitely be making this pizza again and again and again.

I had used a whole head of cauliflower, 3 eggs and 1 brick of goat mozzarella and it made 3 large pizza crusts. We ate 2 of the crusts on Friday and I cooked up the third crust and let it cool. I put the cooled crust into a large freezer ziploc bag and put it in the freezer. I pulled it out of the freezer on Saturday afternoon and let it sit on the counter for a few minutes. It was only slightly frozen when I piled a bunch of topping on it and threw it in the oven. After the cheese had melted, I pulled it out and served it for lunch. The only difference that I could tell was that it had a slight cauliflower taste, but overall I liked it and so I think that the next time I make pizza, I’ll probably make enough so that I can freeze a few crusts to be able to pull out and whip together a pizza when I need a quick easy meal.

If you are trying to avoid wheat and dont want to buy the guten free crusts…I’d offer this as a delicious alternative. Let me know if you do try it and what you think? Does it sound appealing to you or just plain disgusting?

Once More…with Love! (and MANY pictures)

Earlier this week we had our last and final head shaving party.

Angelica’s hair (which had started to grow in so SO cute!) was just in the beginning stages of falling out. She still had a head full of short hair, but we could see evidence that it was getting ready to fly, fly away! There was hair on her pillow and lose hairs on her neck and on her clothes….she was definitely shedding.

She could just wait and let it fall out on it’s own but there is something just kind of nasty about waking up in the morning and rubbing your face in a pillow full of short hairs. Even worse is when you wake up with a bunch of tiny hairs in your mouth and up your nose. BLECH!

My sister, Michelle – isn’t she pretty?

So, when my mom and sister came over to get their heads shaved, Angelica had already decided to preemptively shave her head too.

We’ve joked around that Angelica has a future in hairdressing with all this head shaving that she’s done over the last year.

Chelle had brought her kids with her and my other sister had dropped Jack off for a visit and so we had the 3 bigger girls helping to watch the 3 little boys. Cousins!!!!!!!! So! Much! Fun! Jack and Zach are already walking like little men, but Judah is still clinging to the walls and the furniture….look at those thighs – SMOOSHY BABY THIGHS…NOM! NOM! NOM!

As always, Geli’s kind of goofed around when she’s done the head shaving…she decided that Aunty Chelle needed a mowhawk this time around.

Because there was hair ALL over the bathroom floor, we put Zach and Judah into the bath tub to keep them contained….it was a good idea, until Judah grabbed the taps and turned the bath on. Yah! They were dressed…..Oh Well, they had fun playing in the water. It kept them occupied until we were finished.

Zach wasn’t so sure that he liked playing in the bath WITH Judah…..

…..but he is just SO DARN CUTE, isn’t he?

In the meantime, Geli finished up Aunty Chelle’s hair and they did the final check. It’s awful to get your head shaved and then to walk away and find out later that you have a few scraggly long hairs that didn’t get taken care of…usually you end up with a few behind an ear or sticking out of the top of your head. There is an art to “rockin’ the bald look” and it requires some effort! Ha Ha Ha!

Then it was Aunty Chelle’s turn ~~to get back~~…, ~~to get revenge~~…, to help shave Angelica’s head!

Jack was helping out by taking care of Aunty Chelle’s necklace. He did such a good job, too! Love the steely blues, man!

Aunt Chelle figured that Angelica needed one triangle patch on the top of her head. It was very modern looking, no?

Becca gave me a great big CHEESE face! Silly goose!

While Brianna went in for the close up…..

While everyone else was going bald…..Judah was practicing his best “greaser” hairstyle. Looking pretty good, buddy! Looking pretty good!

Aunty Chelle finished up on Gelica’s hair….

And then it was Nana’s turn.

Geli wanted to try out a Mowhawk for Nana too. She looked pretty cute with a punk hair style, too! But we didn’t figure that the mowhawk would look amazing for Aunty Brynn and Uncle Chris’s wedding in August and so Angelica shaved it off.

After they were finished, we headed down stairs to get a few good pics of the baldies outside.

Aren’t they pretty? Who needs hair? And this way, we’ll not have to do our hair over the summer, how awesome is that?

Three Brave, Bald Beauties….

Josiah and I shaved our heads this morning….I don’t have any pics of him, yet! but here is the most recent photo of me. I took this picture this morning and put it on Facebook with the caption “Bald Once Again…for the final time!”

This is IT! After Geli’s hair falls out this time and when she’s done this last half of this stage….it’s done! Her hair will start to grow back and we will be moving on away from this past year. It’s exciting to grab ahold of these times, knowing that they signal the beginning of the end.

Shaving your head is not easy. It’s not something that I enjoy doing, nor do I want to continue doing it. I’m “okay” with it, but i wouldn’t choose to be bald for no reason! My hair was close to 2 inches long. I could actually style it. I was liking that it was starting to grow out and yet…….to stand with, to support, to love, to create a safe place for my daughter….I’d do it a thousand times. To see her bravely confront her chemo induced hair loss and chose to deal with it proactively, knowing that “it’s okay to be bald”, makes my heart sing.

I believe that she sees herself and her beauty regardless of whether she has hair or not. Her hair is not what makes her beautiful, therefore her lack of hair does not speak of a lack of beauty. She is beautiful! She will always be beautiful and her beauty shines from the inside out. Her confidence in herself illuminates that beauty a thousand times more.

While this time has been tough….in fact it’s been brutal. There have been SO MANY GOOD THINGS that we choose to embrace as we acknowledge the tough times. Angelica’s understanding of and confidence in her true beauty is something I’m so thankful for because that is something she will carry with her forever.

New York, New York

I would LOVE to go to New York. I’d love to be able to see the sights and eat the food and shop the shops….it sounds like such an AMAZING experience! Have you been? Was it AMAZING? What was your favorite thing to do or place to be or food to eat or thing to see or hear or experience?

This picture of Judah has nothing to do with this post…he’s just cute! It’s his “Cheese” face!

Jon came home from one of Geli chemo appointments a few weeks ago and announced that Geli had been chosen to go/offered a trip to New York.

Each year 4 teens from the BCCH Oncology Department joins together with teens from other hospitals and they all get together to “do” New York. They choose 2 boys and 2 girls from each hospital and Geli was one of the girls chosen from BCCH.

Jon and I were a little nervous at first, because…..well…..she’s been with us almost 24/7 for the past year. I mean, she’s gone to school some times, and for 2 or 3 hours to the teen group; but aside from that she’s been basically glued to our sides. And this is not just some over-nighter into Vancouver…..this is a whole week away…..far, FAR away!

The group does go with one of the clinic nurses and so Geli will be SO well taken care of. And they wouldn’t offer it to her, if they didn’t feel that it was safe. We also feel that Angelica is such a responsible young lady and that this is a great opportunity for her and so……..after much deliberation…….

ANGELICA IS GOING TO NEW YORK IN JULY!!!!

Now here is the thing….

Angelica is scheduled to start the last 4 weeks of this chemotherapy on Tuesday May 31st which would mean that she’d be finished on June 27th. She would then have 3 weeks to recover and then to go on the trip.

In order to start the chemo, her counts have to be at a certain level. If they are under that level, the chemotherapy is delayed for a week. We’ve had delays before, but we are hoping and praying for no delays this time as a delay might impact her ability to go on the trip.

We are also doing everything in our power to keep her healthy and to hopefully create a situation where she does not get an infection. Again, this round can make her counts go WAY down (like non-existent) and we are trying with everything in our power to keep her healthy and strong so that we avoid any hospital stays…..but especially any infections!

She is so excited! It’s an amazing opportunity and something to look forward to as the last 4 weeks of treatment crawl by.

It’s amazing what a dream, a hope, a goal can do for your emotional well being! We are so excited for Angelica. This is truly an experience of a lifetime!

Miracles Can Happen

Well, yesterday was a day worth noting!!!!

My son….my baby – I’ve moaned about the fact that he doesn’t sleep during the day. Being just totally honest he’s not been the most amazing night time sleeper either, but he does go to bed around 7:30pm and pretty much stays mostly asleep until 6:30am the next morning. He might wake up once or twice (or three of four or five times), but he just wants to cuddle and nurse and is really not even awake!

I’ve been incredibly frustrated at the fact that this sweet boy of mine naps for 10 minutes at a time. Pretty much rendering my day, useless. He is slowly starting to play with toys a bit and can either be entertained by the kids or entertain himself for short periods of time, but for the most part…he wants to be held.

Just recently, I’ve tried putting him to sleep in strollers and reclined high chairs and while I might squeak out a 20-25 minute nap, which is nicer than a 10 minute nap but it’s not been a life altering as I’d hoped for. He’s cute though, isn’t he? He’s such a big boy!

I love that he wants me and at the same time – there is SO MUCH GOING ON AROUND HERE! And I often feel incredibly frustrated at all that I’m not able to accomplish. Today, we had some family photographs taken by Tania from Red Handed Photography. I’ll share more about that in a bit, but basically Judah fell asleep as soon as we put him the car seat and then woke up 10-15 minutes later after we parked the car. That was his morning nap….awesome eh? As least he didn’t wake up grouchy – that would have awesome, no?

I really wasn’t sure what he was going to do for the rest of the day sleep wise and he was pretty cranky. I tried twice to put him down and nope – he wasn’t having any of that business. Finally, at 3pm Jon just walked with him for about 10 minutes and BAM! He was out. Jon put him in his crib and the little darling slept…

HE SLEPT FOR AN HOUR!

I got SO MUCH DONE! It was amazing! Jon took the other boys to the park, Xani had gone swimming with a friend and Geli was visiting my mom….so it was just me trying to plow through as much house crap as possible before everyone came back…

It is so nice to feel like you’ve accomplished something. It’s a lovely feeling!

And now I must go and attempt to accomplish more….so I shall leave you with just a quick video.

Judah wants to tell you something!

Unexpected Blessings

Back in June/July of last year, just shortly after Angelica was diagnosed with Leukemia, my Aunt, Uncle and Cousins got together and bought Geli an iPod Touch.

It was the most amazing blessing EVER! (to those reading this….it’s not that your gifts weren’t amazing too, I just happen to be mentioning this particular gift for a particular reason that you will soon see.)

Angelica spent hours, and Hours and HOURS on her iPod. Playing games, and listening to music and watching movies and looking things up and well, it provided some amazing distractions at times when distractions were so SO needed. She never went ANYWHERE without her iPod.

One day a few weeks ago, Angelica went to school and had her iPod tucked into the outside pocket of her backpack. Somehow, someway, her iPod got stolen out of her backpack. She was SO upset. Its upsetting when the innocence and naivety of your world is stripped away and you realize that the world is not the safe place that you might have thought it was. To have something of yours stolen from you……it’s a rude awakening into reality! It’s even more upsetting when that “item” has memories and key events in your life, attached to it.

We asked if there was any way possible for the school to make an announcement about her iPod being stolen. Geli checked in at the office a few times, but no one had turned anything in!

We got a call two weeks ago from one of the teachers who mentioned that the WGSS Grads were fundraising to get Angelica a new iPod.

We were shocked, in a good way! Once again, we are so touched and amazed at how this community has rallied around us and supported us and loved us…..it’s overwhelming, in such a very, very good way!

I got the call last week that they had the funds in and were able to purchase a brand new iPod for her. This is even an upgrade from the amazing iPod that my family had already got for her. This new one has some new features that her previous iPod didn’t have, like a camera and the ability to Facetime.

On Friday, while she was at school, the principal came down to her Math class and got her out of class and took her down to the English 12 class. We hadn’t told her about what was happening and so it was a surprise for her.

She was BLOWN away! After they presented it to her, she texted me to let me know what had just happened. I had cried when the teacher had called to let me know and I cried again when she texted me and I’m crying now, just thinking about it. She was so SO excited. It was such a HUGE blessing for her. She had basically resigned herself to the fact that her iPod was gone forever. We don’t have the ability to replace it right now and so………….well, that was just the end of it!

The class presented it to her, and they even had it engraved for her. How amazing is that?

In the middle of this crazy, horrid weekend of pain, this blessing could not have come at a more opportune time. In the better moments, she has loaded the iPod with all of her previous apps and music and added new movies and music to it. She’s been able to watch movies while pacing the house or laying in bed or on the couch. She’s been playing games to distract herself and quite honestly, it has been the perfect gift that came at the perfect time.

Thank You! Thank you for giving, for sacrificing, for caring for and supporting!

WGSS Grads of 2011, you have made a HUGE difference in this young lady’s life. She (and we) will never forget you or your kindness. You have given from yourselves and invested in the future. You should be SO proud of yourselves. I am so thankful to you. May your futures be bright and full of hope, peace, joy and love; and may you be abundantly blessed in such greater measures than you’ve given out.

On a Scale From 1 to 10….

It’s been rough around here this weekend.

Angelica finished her last dose of the steroid that she was on on Thursday night. She woke up Friday morning a bit achy and I kept praying and hoping that she would somehow miraculously escape the brutal joint pain that she experienced that last time that we went through this round.

It’s been a rough couple of weeks and we are just trying to keep focused on the fact that end is so close. She has one more “set” of chemo to go through and then she is on Maintenance.

Maintenance is the long term chemotherapy designed to destroy any lingering cancer cells that may possibly be hiding in the body so that it completely eradicates any presence of the disease in the body. It is less intense that the previous chemotherapy and usually lasts about 2 to 3 years.

The steroid is a pretty brutal drug. It has it’s benefits, but some of the side effects are pretty tough to deal with. The few side effects that Geli struggles with the most are:

– a diabetic state
– insomnia
– wicked joint pain

These past 3 weeks have been tough because we’ve been attempting to control her blood sugars by food and exercise and she’s done really well. The biggest problem is that it’s something that requires actual effort and a discipline on her part to not just eat whatever she wants. The hassle of having to deal with it wears on her after a while. Especially because the steroid causes an increase in her appetite and what she wants to eat are carbs, but they are also what cause her blood sugar to rise. Typically after 2-3 days of being on the steroid, her body seems to recognize that it needs to produce extra insulin and she can relax a bit on being so tight on carb control. This last dose was a bit tougher than that…..I think her body is tired. I think that emotionally, she’s tired and that mentally, she’s exhausted. It took until the last day on the steroid for her body to catch up and stabilize…..not cool or fun!

I know that Jon and I are noticing that as we get closer and closer to the end of this intensive stage that we are getting more and more tired. We know the end is coming and it’s like the past year is gaining on us and we are feeling like we are being swept under. We’ve fought the exhaustion for so long and we just need to stay strong for a little bit, but it’s harder and harder to keep on.

If we’re feeling like this, I cannot even fathom what she’s feeling like.

Anyway, she’s slept so poorly over the past 3 weeks and has pretty much slept about 10 hours in the past 3 days. Even with medicine….and the lack of sleep is just compounding everything. She has said that the pain is at a 4 out of 10 and it’s mostly just in her knees although her shoulders and wrists and lower back hurt. Last time around, she indicated that the pain reached a 6 or 7 out of 10 and she had more joints that ached. So, if the pain is less intense and fewer joints are involved then she is just worn down and less able to “handle” it all. And that sucks!

We’ve gone the medication route to just try to wait the time out.

And even that only helps to take the edge off, it doesn’t remove the pain completely.

She did sleep from midnight to 4:30 last night but then has been up since then. Sometimes walking and moving the joints can help and this morning from 4:30am until 8:30am, she paced the floor while watching two movies. And at that point, she was just exhausted and asked for more meds and went up to take a bath until they kicked in and right now she’s sleeping.

We looked at her journal from last time around and if this time follows the same timeline as last time, then yesterday and last night should have been her worst times…..today should be less intense with tonight being better than last and then every day should get better from here on out.

The second half of this round is supposed to start on Monday or Tuesday May 30 or 31. We are just going to be upfront and beg for your prayers over the second half of this stage. At the end of this stage that we are coming up on, Geli has ended up in the hospital every time. It’s a pretty intensive chemo treatment and knocks her counts down to nothing, which puts her at risk of infection. It would be amazing if she managed to stay out of the hospital this time around. That is what we want. We want for Geli to make it through this next round of chemo and to not pick up any bacteria at all.

She has an amazing summer planned and we are wanting to just move forward smoothly onto the next stage of our lives.

I want to thank you for all that you’ve done. I know that I’ve not posted as often and really, things have been a bit crazy around here. There is so much more going on that I’ve not had time or energy to share. Just know that in all my busy, crazy, down, frustrated times…..the things you’ve done, the words you’ve sent, the prayers you’ve offered….they come back to my mind and give me strength and encouragement and make me smile.

Thank you for walking this journey with us. You have NO IDEA how much we’ve needed you and are thankful for you and appreciate you!

Keeping On

I dropped Geli off at school this morning just before 9:30am and I just picked her up…..just after 10:30am. 1 hour…yee haw!

She called and said that she had a headache and was seeing spots and that the room was shifting and spinning….sounds like fun. Migraine, anyone?

This is her week “on” the steroid and she’s definitely “off”.

Her blood sugar levels have been a bit harder to control this week as opposed to two weeks ago and while she is doing a good job…..it’s been a lot of work and is not fun at all.

You know what it’s like when you cant have something and it’s all you can focus on…..yah, her and her carbs…..they are quite the pair this week. It’s like when you are dieting and all you can think about are the high calorie, high sugar crap; and salads and fruits and lean cuts of meat just don’t quite cut it….yah! It sucks!

She was awake this morning at 6am and couldn’t get back to sleep. Apparently she came down to our room and got Judah when he woke up at 6:30am. I say apparently, because I didn’t hear him wake up or her come to get him. Nice! Jon knew though….so there’s that. She brought him back down at 7am and so we got to sleep in for an extra half an hour this morning. How nice is that?

After the kids went to school, Geli lay down on the couch and drifted off to sleep. She didn’t have a class for first block this morning and so I just let her sleep. I woke her up just before 9:30am because that’s when her next class was.

It’s so hard to know what to do. Do I just let her sleep or do I wake her up and make her go to class. On one hand it’s good for her to sleep and rest and heal, on the other hand, I want to try to keep to a “typical” schedule as much as possible.

We keep encouraging her (and all the other kids) to plan to do things as normal as possible. Plan to get up in the morning. Plan to get ready for the day. Plan to go to school. Plan to stay awake in the daytime and to sleep in the night time. Plan to be independent and responsible for yourself. Plan to be happy and healthy.

I want her to be able to be as normal or typical, as possible. Then, when there are the times when she just can’t do things for herself or if she need to sleep or stay home from school – then it’s okay! I want her to try her hardest to LIVE! And then to ask for help when she needs it. I don’t want her to learn to be dependent on us for everything.

It’s so easy when your child is sick for a long period of time to start to cater to them. It’s easy to get in the mind set that they are just a “poor baby” who is so hard done by. It’s easy to treat them as if they deserve to have everything done for them in an effort to “make up” for all the hard, tough things that they are dealing with.

It’s a fine line to walk between caring for, pandering to and continuing to train your child.

We’ve been at this for almost a year and while I realize that one year out of a life time is not that long of a time….there are things that are important to me. Continuing to train Angelica (and our other children) in appropriate ways for the circumstances is really important to me. Life is full of ups and downs and learning to carry on in the middle of it is so important.

We encourage Geli that if she can do something for herself – that she should. Get up and get yourself a glass of water if you want one. Get up and that book that you wanted or a snack for yourself. If you can’t get up and get yourself one, then by all means ask…or explain that you probably could, but that it would require more effort than you feel that you currently have to give, and ask for help. This also allows us to gauge where she’s at physically, mentally and emotionally. She may just feel too exhausted to try and that’s okay. That’s a part of this whole process. There are good days, excellent days, tough days and really REALLY tough days.

But, that is also life!

In life, there are good days and excellent days and hard days and really, REALLY bad days. I think it’s important to live and enjoy your good days and to plow through some of the tough days and to learn to admit when you need the help and….. to ask for the help.

We are here to help Geli. We are here to encourage her. We are her family and we love her. We can see when she’s actively choosing to participate in life and to be responsible for herself and even giving out of herself. On the flip side, when she is struggling, we are right there to help and encourage and love and to give back into her.

These are some of the life lessons that I feel are so important. I feel that it’s important to not see her as a “poor baby”. I feel its especially important for her to not see herself as a “poor baby”. I feel that it’s important to recognize that she has had (and is having) a tough year. I feel that it’s important to validate when she is struggling. I feel that it’s important to encourage her to keep on, keeping on. I feel it’s important to teach her that this is her life. She can recognize that this is a part of her journey (just a small part…) and accept it for what it is OR….she can feel that she’s been given an unfair lot in life and be consumed with how much better everyone else’s life seems or appears. If she can learn to accept that this is her journey, she will be able to find happiness within herself as she carries on. If she focuses on how bad she has it and how good others have it, she will be oh, SO miserable.

For the most part, she “gets” this. She is an amazing young lady and I’m so proud of her. This is not an easy portion of her life’s journey, but she is walking this road with courage and grace. I’m thrilled to be able to walk along side her, encouraging her, cheering her on……loving her!

ps. Geli has no more chemo until Monday May 30th…..this is wonderful and yet at the same time, the 3 doses of chemo that she has just had will be hitting their high points of effectiveness within the next week and a bit.

Here are some prayer requests for the next week or so:

– No joint pain when she goes off the steroid this time

– No infections of any kind

– No Headaches (she’s currently dealing with this and it sucks)

– For Health…that Geli would really be able to enjoy the next 2 weeks.

– For Rest for all of us…..

Thank you so much! We have been so encouraged by your love and prayers and are grateful for YOU!

Siah – May 2011

Since we got our iPhones, I’ve taken a million pictures on my phone, but I’ve definitely not taken as many photos with my actual camera.

I’m trying to be more conscious of taking photos with my camera because I want to be able to make another Photobook at the end of this year and while I try to take the iPhone photos in as high a quality as I can…..it’s just not the same.

And so yesterday I picked up my camera and took a few pictures of Josiah and then I gave the girls notice that sometime in the next week I’d like to get some photos of them as well…..they like to get their picture taken, but they dislike getting ready to get their picture taken. My Silly Girls!!!!

After Geli got home from school, I asked her to keep an eye on Judah; and Siah and I headed outside to our front door step. We had a bit of a quiet or down day yesterday…in fact, Siah is still in his pyjamas in these pictures. They are stripey footed pyjamas and OH. SO. SWEET! I love little boys in footed pyjamas. They look so little and babyish still. I find that kids grow up too fast and while I’m not trying to keep my kids from growing up, I find that too often we (as a society) move at such a fast pace; and we are constantly looking forward to the next stage in life. So much so, that we don’t take the time to just enjoy the stages that we are in. I know I’m generalizing and that not everybody does this, but it does happen.

It’s been difficult to get pictures of Siah recently. He doesn’t want to sit still long enough or to even look towards the camera for long enough for me to be able to catch any decent shots…It took quite some effort, creative thinking, silly stories, a lot of booger talk and about a million shots to be able to come up with these.

But I love looking back at seeing how much my little ones have grown. To be able to take some pictures and attempt to catch “that thing” that makes my kids who they are. To be able to catch shots that show off the sweet, cute, quiet, silly, wonderful, many varied sides of my kids……..I love that.

If you’re interested, you can check out the rest of his pictures here.