Jeremy – Page 5 – xangelle.com

Oh Man….

well, life just keeps on flying by and I keep thinking I should post something and then, I have no energy to do so….

In bullet points:

– Geli started Chemo on Monday
– She got chemo shots into her thighs on Tuesday
– She went back to school on Wednesday (hopefully for a good portion of the next month)
– Jeremy is LOVING the newest Robot Camp
– Jeremy will do ANYTHING for a Lego mini fig (He cleaned the kitchen spotless is less than 15 mins and that is basically a Christmas Miracle)
– Xandra caught up on ALL her homework (because I bought the latest Maximum Ride Series Book and wouldn’t let her read it until everything was up to date)
– Geli is ALMOST caught up on her homework but she was really, REALLY behind.
– Geli is having a hard time adjusting to a “normal schedule” (She’s finding it hard to get to sleep at night and as a result is overly tired in the morning making mornings a bit tougher than they should be)
– I saw the psychologist at BCCH yesterday and cried too much (now I’m just trying to process everything and trying to figure out what I’m going to do moving forward)
– We are contemplating our living arrangements and trying to figure out is there is a better room allocation that would work for us.
– Jon’s scheduled appointment to give blood is tomorrow morning.
– Megamind comes out on DVD today and we are planning to watch it tonight as a family.
– Baby turned 8 months old yesterday and his cousins came to play and I have a bazillion photos to plow through today.
– I love my sisters. Am thinking of them lots today. They are AMAZING!
– I am having too many “I should be doing…..” thoughts and it’s wrecking my life….I need to think through and just “DO” and not get so caught up in what I should be doing. It’s harder to do than it might seem.
– About the previously mentioned room allocation….would you consider turning the basement into the “master bedroom”? Why or why not? Any thought?
-And with that I’m out….I’ve got a mountain (5 large loads) of laundry that I need to fold. Ick!

Here and There (continued)

Well, I managed to update once yesterday and then it was time for the kids to come home from school and things just went downhill from there.

I forgot to give Jeremy his medicine yesterday and I can’t fathom why his teacher didn’t have him call home. If his behaviour after school was consistent with his behaviour during the day…..all I can say is, “WOW!”

2:59pm Xandra came home from school. My dad dropped her off but Jeremy stayed behind for “Robotics Camp”. Judah was SO excited to see her. He is always so glad to see the kids when they come home.

3:03pm We took this picture to send to Jon, just for Xandra to say, “I love you, Dad!”

3:45pm I find it so hard to believe that we generate THIS MUCH GARBAGE…..I sweep on average, 2-3 times a day and always manage to sweep up a decent mess. Man! Makes we feel like we’re pigs or something……

3:47pm Xandra worked on her homework! She is trying to catch up on a bunch of stuff that she fell behind on over Christmas and in January. She has one more project to hand in and then she’s done…..and then we’ll all breathe a sigh of relief. I’m sick of ragging on her to do her homework!

4:08pm I left Xandra and the computer to babysit and ran up to the school to pick Jeremy up from Robot Camp…..Josiah has watched more movies in the past 7 months than he has in his entire life. At this point, I’m just trying to survive….

4:12pm I had exactly 2 minutes of complete silence before I went in to pick up Jeremy!

4:16pm My Sweet Boy – He LOVES the Robotics Camp and we are so glad that he has found a hobby that he excels at.

4:24pm I managed to throw through a couple of loads of laundry today. Didn’t get them put away, but washed, dried and folded is at least 3/4 of the way through the process…

4:27pm On the other side of the world……here is the wall that is directly across from Geli’s bed…It’s all of us who can’t be with her….cheering her on, if only in picture! You’re never alone, Geli! Never alone!

4:28pm An amazing guy we know dropped off this mini fridge so that Jon and Geli could put decent food in it. The main fridge in the kitchen is always crowded and overflowing and so this is a HUGE blessing! Thanks, Reg! You Rock!

4:48pm Jon sent this picture through of Geli’s room all decorated for Valentines Day! I believe that she and her cousins made these???? Pretty, eh?

5:14pm What is it with 5 o’clock, anyway??? This was the start of many, MANY meltdowns in our family last night.

5:18pm Meanwhile, Jon and geli decided to go for a walk. They went to the Safeway just down the block from BC Children’s Hospital and also to the Dollar Store where they found this sweet pink hat with flames and the name “Angel” on it. They also picked up some socks! You never seen to have enough of something when you are at the hospital…sometimes its underwear, sometimes socks or shirts….something always gets missed in the packing. Unfortunately, we live too far away to just pop over to drop something off and usually they have to determine whether they can wait until we come in next or just go ahead and pick something up.

5:31pm We had soup for dinner, AGAIN! I’m trying to figure out how I can convince the kids to have it one more night. Maybe we’ll do cereal to shake things up a little. We’re living large over here, I tell ya….LIVING LARGE!

5:48pm While we finished up dinner, Jon and Geli walked “home” in the beautiful Vancouver dusk.

6:05pm We had some ice cream for dessert. These are little gluten free Oatmeal cookies with Chocolate Coconut Ice Cream in the middle for a delicious Ice Cream Sandwich!

6:15pm And I’m counting down the minutes until I can put the kids to bed. Don’t want it to be too early because then they get up too early and so I need something to waste some time…..

6:43pm A bath usually takes up a good chunk of time and it’s hard to be miserable when you’re in the bath.

6:44pm Siah’s faces are priceless!

6:56pm Jon and Geli made spaghetti dinner and said it was delicious…they even had seconds!

At this point, I was trying to get boys into bed and things were a little intense. By 8 o’clock, Siah was asleep, Jeremy had woken up Judah, Judah was crying, Jeremy was crying and then I started crying. Between Judah feeling sick with this plague that has swept through our family and cutting teeth, I’ve had less then 4 hours of sleep a night for the last week and those 4 hours……have been in less than 1 hour chunks. Apparently, I can sort of hold myself together for a week with next to no sleep and then…….and then I cannot hold myself together any more.

The house was a complete mess, the cleaners were coming the next day and nothing was picked up for them, the baby was still awake, Jeremy was crying himself to sleep and I was crying and messaging with Jon on my phone.

8:13pm It was a pretty sad moment. I sat on the edge of my bed and rocked and rocked and rocked this little one while messaging with Jon and my momma.

8:27pm And then he slept and then I crawled into bed and began what was to be another LOOOOOOONNGGGG night!

I have an appointment tomorrow morning with our family doctor to get Judah checked out. Xandra, Josiah, and my Momma are starting to do better after a week of whatever this plague is and I’m pretty sure that Judah will be okay as well, but he is wheezing quite a bit and while that’s probably just because his airways are so much smaller, I want to have him checked out before the weekend.

Sunday Night Ramblings brought to you by our iPhone(s)

Well, it’s Sunday night at 7:45pm and I’m looking at a ton of random photos from both mine and Jon’s phone…… These pictures sort of highlight the past few days of our family, both here at home and at the hospital.

Seeing as I’ve managed to get the 3 kids that I have at home down, I thought I might try to throw them up into a post along with some of my random “brain thingys……”

This was Jon’s chair bed……..and then he got upgraded to a cot, but it was horrid…all lumpy and wires and bars sticking up and out and totally uncomfortable…..

This is actually the lumpy nasty bed………..

He then took a few test rides on some of the cots in the empty rooms on the floor that Geli is on and ended up with a deluxe bed…….that pretty much looks exactly the same as the picture above. In fact, you’d never be able to tell the difference. And this is where you all start with the “Princess and the Pea” jokes for him right about now…….Ha Ha HA!

It’s amazing how the dynamic in the house changes when you add or subtract people and right now, we are 3 people short over here and Xandra and Jeremy actually “played nicely” on Saturday morning. Here is the Lego maze that they created. It was supposed to be a game board…..Not sure if they actually played a game or not?

We went for a walk on Saturday afternoon. Like I mentioned earlier, Siah’s been staying at my mom’s because he’s been a coughing, snotting, germy mess…..He’s missing us and I’m missing him dearly and so my mom suggested that we go for a walk and hopefully with all the fresh air, we wouldn’t pass the germs around.

What??????? Don’t you take your Lego robots for walks with you?

While we were playing and walking and doing a bunch of other boring stuff, Jon and Angelica slept in FOREVER and then they had some DELICIOUS hospital breakfast…….

Later, they got in a little exercise……you can see that she’s really going fast…look at the blur that should be her legs…

After a little clean up (cause riding a bike can be sweaty, sweaty work) they headed down to the kitchen to play some Monopoly. Geli must not be feeling a hundred percent because Jon KICKED HER BUTT! Like really, REALLY badly, and she ALWAYS wins! So Weird!

Meanwhile, we walked and walked and walked and walked…..you know, the whole theory that if you tire the kids out, then maybe they’ll sleep really good….ya doesn’t always work for my kids. SUCKS! Along the way, my strange kids were kinda creeped out by these Alien Pods – but I have no idea where they got that idea from….none at all!

But, we finally made it to the park….

The kids played and climbed and went on the swings and up and down the slides and onto the monkey bars and we only had to yell at them to avoid all the other children a half a dozen times…..by that point, the parents were just high tailin’ it outta there anyway…… (okay, all of that was totally made up…..There were ONLY 4 other pre-teen boys “hanging out” there and they only had the rescue Siah “once” from climbing up the tallest part of the tallest play structure…That child is seriously part goat and the other part is monkey….he’s amazing!)

We managed to deal with Little Master Siah McSnotterson. This way, you only have to deal with the snot once as opposed to blowing his nose a million times, and it totally saves the jacket from needing a wash too. Come on! You parents know what I’m talking about….if there isn’t a kleenex around the slug slime goes from one wrist up to the shoulder on both sides. BLECH! I’m shuddering just thinking about it.

Judah had fallen asleep while we were there, and it was so nice to just sit on the park bench and to not have to “do” anything. After we had been there a while, I loving asked Josiah, in the softest most gentle voice that I own to not do something that he was doing…..and Judah woke up. You’d think that it would take something more like a yell or scream to wake that kid up……you might be right? At least he wakes up happy, eh?

As we walked home, the kids all needed to express their inner Jackie Chan by doing “maneuvers” on the fence…This is Jeremy’s best shot of the “Despicably Crouching Tiger” Amazing, isn’t it? Such skill and finesse!

Xandra dropped a mean “Flowering Stork” on us…..

I tried to ask Siah which maneuver he was pulling off and the best I can gather from what he was mumbling behind those trailing kleenex’s was that he was really working on the “Dangling Walrus”. It’s a two person move as you can tell by the picture and my mom very graciously offered to stand in for him.

These pictures are really just bonus pictures just because I love them and they make me smile……..

This is a picture from before Geli and Jon went into the hospital, but I’m putting on here anyway. I love that its blurry cause he’s moving so fast, but you can see his two little front teeth sticking out and the nerdly glasses combined with the swooshy hair….this picture is priceless to me!

This picture CRACKS me up. The look on Geli’s face is amazing. You can almost hear her saying, “Huuuuuh?”

And in this one it looks like Judah’s trying to figure out who is ‘in” the phone.

Well, I ate a million gluten free oatmeal cookies with a cup of almond milk and called it dinner….I figure it’s exactly the same as porridge, right? Well if that’s the case, why do I feel SO GROSS! Yuck! Time for a millions cups of water and possibly an early-ish bedtime…..if I’m smart!

And with that…..I’m off! Hope you’re weekend was a good one! Care to share what the highlight of your weekend was?

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.

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.

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!

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.

The Butterflies Flutterby

For Christmas, Jeremy gave one of his sisters and 3 of his cousins, a whole bunch of butterflies.

…Paper Butterflies, to be exact!

This is another inexpensive gift, and once you have the tools…..you can make this gift for any number of people that you know that might enjoy them….

We had a small butterfly paper punch and I took another 40% off coupon to Michaels (Don’t go shopping there without one. You can google for one and print it out yourself.) and bought a large butterfly punch. I think that it was originally about $23 and with the coupon, I paid about $14. I had Scrap booking paper at home but in the pictures that you see here…..I actually used some paint chips from Home Depot that I got for free.

Angelica hasn’t put up the color co-ordinated butterflies that Jeremy gave her yet. (Disclaimer: I very quickly and with out too much thought threw these butterflies up on Xandra’s wall before Christmas time – this was actually the “idea” behind Jeremy giving the “wall decorating butterflies” as gifts. In the future, I would probably take a bit more time to place them better, but I was rushing and basically just threw them up therel.)

I think that we need a little back story to go along with this post…..

Angelica and Alexandra were sharing the rec room in the basement as their bedroom when Angelica was diagnosed with Leukemia. After spending the month in the hospital with either her mom or her dad, Angelica was feeling the need to be closer to us. Jon and I and the boys have the rooms on the top floor. Xani had been staying up on the top floor with us while Geli and Jon were in the hospital and so it seemed like the right thing to do, to re-arrange the rooms so that Geli and Xani could be upstairs and close to us.

This was a very good move. Geli was SO sick and needed to be close to us and Xani really needed to be close to us as well. We got a bunk bed and moved the girls into the room that we had been using as the TV/office room. The boys stayed in their room and Jon and I stayed in our room with Judah. 7 people in 3 rooms. Hah! It was awesome.

Angelica has been feeling the need for some space recently and has been feeling independent and strong enough to want her own room. We finally moved her down stairs into one third of the rec room. The TV is in the middle third and Xani is behind some bookshelves in the final third. So, the 2 girls have their own spaces and they are loving it. We have placed a monitor down in the hallway close to the bathroom and the girls rooms and so if they need us in the middle of the night, they just have to call and we can come running.

Wouldn’t you know it that since we’ve moved the girls down there, we’ve not needed it…..until a couple of nights ago and for whatever reason, the receiver up in our room was turned off. Angelica was having a bad night coming off of the steroid and was in so much pain and we couldn’t even hear her to go to her to help her. Finally Xandra woke up and came up to get us. Now we make sure that it’s on before we go to sleep at night.

We’ve moved Jeremy into the room that the girls had been in and now he finally has his own space which is HUGE thing for him right now. In the last while, he was getting quite frustrated sharing a room with his 3 year old brother who is struggling with the whole “respect your siblings property” concept. We are working with him on that one….it’s not exactly a quick learn. Not Fun!

We are still unsettled on what exactly we are going to do with Josiah and his big bedroom; and Judah is not quite ready to move into a room with Josiah and so for now…..Josiah has a HUGE room to himself, while Jon, Judah and I share the master bedroom, and……we’re all okay right now.

Okay….back to Xani’s space/room.

There is a horrible wall paper border down in the rec room (see photos above) AND the walls are painted a really nasty putty color AND….it’s kinda dark and icky down there.

I went to Home Depot the other day because I was dreaming about painting different rooms in our house. I have absolutely no energy or time or ability to be painting rooms (at this point in our lives) and yet the fact that I was even dreaming about what I might like to do in the future…..pretty amazing. I picked up a bunch of paint chips to see how the different colors looked in the different rooms and to see which of the colors we all liked.

I sat down at the table one evening and punched a bunch of butterflies from the paint chips. I put a pop dot on the back of each butterfly and then took them down stairs and stuck them on Xani’s wall. I was just hoping to brighten up the drab-ness of her space a little. After I got the few that I had, punched out and stuck on the wall – I ran upstairs to punch butterflies out of the rest of the paint chips. It is just a hodge-podge of color.

Xani was away when I did this and was thrilled when I came back. One day when we do get the rec room done the way that we would like it to be, I’ll probably punch out a bunch more that are color co-ordinated to a color palette that she chooses, but for now….there’s just a little bit more color in an other wise very un-colorful corner.

Depending on whether or not you had paper at home to use or had to buy some…or if you went and picked up some big paint chips….this is a fairly inexpensive gift and one that is easy to make and do, even for younger kids to help with.

To make this craft idea, you would need:

– Paper (card stock or heavy gauge paper works best)
– Pop dots (or some other raised double sided adhesive)
– Paper Punch (we went with butterflies but I saw a really cute elephant and I also think that different size circles as polka dots would be SO CUTE, too.)

Jeremy and I worked together punching out the butterflies and attaching the pop-dots. We put together sets of 120 small and big butterflies and packaged them as gifts. Jeremy even made origami boxes for them to be given in. I wish I had thought to take a picture. They were so cute and so very much, from Jeremy. He LOVES origami. Anyway, I think there are about 70-ish butterflies in those pictures (above) from Xani’s walls.

In all of my dreaming…..I was dreaming about painting my laundry room a bright cheery yellow color and I would LOVE to put a bunch of white butterflies on the wall to brighten up my teeny, tiny dismal little laundry room. It’s one of those things that I am looking forward to for the future, and knowing that I can just punch them out when I want them, is so much fun!

Do you have any craft ideas for decorating your house or place or work space or even just ideas that you are looking forward to using in the future? I’d love to hear some of our favorite ideas.

MMMmmmmmm

Things have been busy over here in so many different areas.

I keep thinking that I’ll have a moment to update what going on and instead I’ve ended up with a backlog of things to write about and new things just keep on happening. That’s life isn’t it? It just keeps moving forward at a steady, predictable rate; even if you desperately want it to slow down and especially if you want it to speed up.

In case things weren’t already crazy enough, I’ve recently needed to remove gluten from my diet. I mentioned a while ago that Judah was having some gastro-intestinal issues. Removing dairy seemed to help a little and yet it really didn’t help like I thought it would. When I went to the doctor, it seems that his issues are dairy, gluten and yeast related and we are trying to figure out if this is a short term deal or a much more serious situation.

It’s been just over a week since I removed the gluten and while things are not great, they do seem to be a little bit better. Judah seems to be in less pain and that’s a huge deal for me.

I found this recipe for gluten-free Oreo cookies and figured that I’d attempt to alter it to make it dairy-free and egg-free. I baked up a batch tonight and it’s amazing.

Jon figures that they are good enough that you’d never know that they were dairy, egg and gluten-free. They are sooooo yummy and I know the kids are going to flip when they wake up in the morning.

Angelica is starting the 4th stage of the chemotherapy tomorrow morning. She went and got blood work done this morning and when her counts came back this afternoon….they were FABULOUS!

We were hoping that they would be high for the start of this round and they are, especially compared to how low they were last week. They are low for normal, but high for Geli.

Xani has been quite sick over the past week. It was almost like the flu but with no barfing or fever…….she’s had a headache, sore muscles, an all over achy feeling, runny nose, cough, and I think that she’s finally, slowly, on the mend.

Jeremy turned 10 years old yesterday and I’ve got a bunch of stuff to update on him.

Siah has not been sleeping very well and as a result, he’s been a bit of a goofball during the day. Lots of tears and whining and fussing and moaning and screaming….it’s a bit wearing. And I’d love to say that I have some great ideas and plans of what to do with him to work through this rough patch, but….ya…..nope! Nothing! I’m not sure if I’m too tired to come up with something or maybe I need to be just a little bit tired before “it” comes to me. I dunno, but I’m sure we’ll figure something out or maybe he’ll grow out of it all before I have to come up with something.

Christmas is coming and I’ve been baking (gluten-free, of course) and we’re trying to get things ready so that things will be peaceful and calm. I can at least hope for peace and calm, right?

I’m hoping to find a few moments to be able to get a few things caught up on here (and in real life). Should we take bets on whether it will actually happen or not????

Ah well. Life keeps moving along and I keep on moving with it, whether I like it or not.

Float like a Butterfly, Sting like a…

…..wasp?!?

When Josiah split his head open in the beginning of September, Jeremy was upset. SO UPSET!!!!

Like WAY MORE upset than he ever should have been. He was bothered enough that based on his reaction, you might have thought that he was responsible for the accident; except that Jon was right there when it happened and Jeremy had nothing to do with it.

The biggest thing that he kept talking and stressing about was the possibility that Siah might need stitches. I couldn’t quite figure out why the idea of stitches was such a problem for him. He was “in tears” over the whole thing and it just seemed so over the top to me. He had just had 3 stitches placed in his chin in July when he tripped and banged his chin and he had acted so calm, cool and collected about the whole ordeal. He had taken it all in stride, never freaking out or making a big deal about it.

We have an older camera that Jeremy LOVES to take pictures with and I recently downloaded all the pictures and videos that he and we have taken on that camera. In among everything, I found this little clip. It totally explains his reaction and is way too good to keep to myself. It’s classic Jeremy. I love my little man!

High Tide and Low Tide

It’s been almost a week since my last post and we’re still trucking along.

The chaos hasn’t really settled down as much as it’s just shifted or changed direction.

Geli has completed the first two weeks (out of 8 weeks) in this second stage of treatment. She was in the hospital yesterday for another lumbar puncture (with accompanying chemo into the spinal fluid) and then received one chemo drug through her IV and another chemo drug that gets given by two shots, one into each thigh.

She walks away from the day with a sore back, a headache, two thighs that feel like they’ve been kicked by steel toed boots, an upset tummy and some serious fatigue. She woke up this morning feeling really off and has spent the day on the couch or hunched over a bright shiny silver bowl. I’ve given her a substantial dose of Codeine and she is sleeping right now.

She’s doing well considering what she’s dealing with, but it’s not all sunshine and lollipops over here.

I had a really bad day on Sunday. It started out okay and somewhere along the line I ended up feeling completely overwhelmed by everything and then spent the rest of the afternoon/evening crying. If all of “this”, the emotions swirling around everything comes in waves, then Sunday was definitely a low tide day for me. I managed to wake up on Monday morning and things were a bit better, but when the evening rolled around and I needed to decide if I were going to my exercise class or not……I forced myself to go as I need to go for emotional and mental reasons as much as I need to go for physical reasons.

I find that if I can go and work so hard that I can’t really think or focus or concentrate on anything else…..it gives me a break from everything and then I feel so much more able to jump back into the thick of everything and deal with it all from a position of strength…..and so I went. And….surprise, surprise! I felt a lot better when I was finished.

We have a quiet week ahead of us.

This second stage of Chemo is a total of 8 weeks. There are 2 weeks of intensive everyday treatments, and that’s followed by 2 weeks where she’s only scheduled to be in at the hospital for 1 day per week. This week is the first of those 2 weeks. Then we do two more intensive every day weeks and then 2 more weeks of 1 day per week.

Here are the most current prayer needs and praise reports.

Angelica has done amazingly well as far as side effects go and we are so thankful for your prayers. Some of the most common side effects from the drugs she’s currently on are mouth sores, nausea and vomiting, fever and low blood counts. Geli has had very little nausea and has only had one real episode of vomiting. She’s had no mouth sores, or fever, no real other side effects and although her blood counts are low – they are not as low as they could be.

These are amazing things because she could be feeling SO. MUCH. WORSE. than she currently is.

We would love prayer that she would stay physically and emotionally strong, and that her tummy would stop hurting. She says that she doesn’t feel sick and nauseous most of the time, but her tummy hurts or aches and it would be nice if that would go away. Also, we would love prayer that she would recover quickly from her big day yesterday and that the headache that is bothering her would go away.

Jon and I could use prayer that we would stay emotionally and physically healthy and strong. It is tough to deal with everything that is on our plates right now. Also that we would have time and opportunity for each other in the middle of all this craziness. It’s difficult to find the time, and resources to be able to invest in each other at times like this and yet even if everything lines up well….often we are so exhausted that it feels like too much effort to go anywhere and do anything.

Xani is struggling with all the emotions that she is feeling. She tends to feel extremes when it comes to emotions and has been swinging between stuffing her emotions and exploding with her emotions…..both extremely unhealthy ways of dealing with her emotions and so we are trying to walk her through sharing her emotions in a healthy way and at the same time dealing with the fall-out of the stuffing/exploding cycles.

Jeremy is Jeremy! He has so many thoughts and ideas racing through his head and often it is exhausting trying to keep up with him. Alternately, he is frustrated with us that we don’t seem to get or understand or that we just don’t have the time and energy to put ALL of his ideas into practice. It feels like we are in a constant tug of war with him mentally and verbally. It’s hard for him and us.

Josiah….well, lets just say that Josiah turned 3 on August 4th and I still haven’t written odes of love and adoration to him as I reflect back on the last three years of his life. That may or may not have something to do with the fact that currently……on any given day……I’m about ready to strangle the little bugger. He is my love, my darling, my miracle baby and yet…..

The whining, yelling, screaming, constant arguing, climbing, getting into things…..well, it can all be summed up by saying that he is testing his boundaries in a BIG WAY. Normally, this would be okay and we’d just set the boundaries and enforce them repeatedly until he figured out what was acceptable and what was unacceptable…..with everything else going on and the exhaustion that is a result of everything else going on…….lets just say that our consistency is not as it should be. I honestly think that he senses that things are not “right” that they are not as peaceful, calm and consistent as they have been and the chaos is affecting him negatively much in the same way that it’s affecting everyone else.

We will all get through this, and we keep telling ourselves that its just a season, but if you are wanting to pray….this is what we need prayer for right now…

To everyone who is praying…… We appreciate every single prayer.

Summertime Fun

This summer has been unusual, abnormal or atypical, to say the least!

We are trying to keep things ~~as normal~~ moving along in a fun and relaxed way while at the same time taking the necessary precautions to keep things as safe and healthy as possible.

Knowing that we are heading into a period of time where Geli’s infection fighting ability is at a low (to non-existent) point, I was trying to figure out something fun that we could do to celebrate the long weekend. We need to be away from gatherings and crowds, and so that make everything a little more difficult and limits some of our regular “go to” family activities.

I figured that we could have a picnic. The kids ALWAYS want to pack a picnic, a blanket and some games and spend an afternoon together, and unknown to the children – that is what we planned.

When we woke up that morning, the weather looked yucky and worse, IT WAS FREEZING!

And so my brain went into overdrive to try to figure out how we could still do something fun, but indoors…..

We have a large shag rug that I figured would be perfect for a little indoor mini Bocce Ball Game. We had a small whiffle ball for the target and 3 pairs of hard rubber bouncy balls in blue, yellow and orange. Then I was going to set up bowling with a bunch of empty water bottles, and a tennis ball. Our hallway is the perfect spot for that. Then I figured that we could pack our lunch basket and put a blanket on the living room floor and I was even thinking of different ways to make smores either in the oven or over the bar-b-que.

I figured that even if the weather didn’t co-operate that we could still have a great and fun adventure of a day.

Fortunately……by lunch time, it was warm and the sun was trying desperately to peer through the hazy clouds. So, we packed everything up, told the kids that we were headed to Derby Reach, got in the van and headed off.

We got there and headed out onto the grassy field to lay our blankets down, and sat down and ate.

We get KFC about once a year and that’s enough to remind us that it’s SO DISGUSTING and then it takes us about a year to forget just how gross it really is and then we order it again….

Nana and Papa came down to join us and then it felt like a party and not just a picnic…

Jon sat and held Judah in the shade….

And Judah was fine for a while but very quickly decided that he didn’t really want to just sit and he informed us of that quite loudly….

Geli, Xani, Nana and myself decided to play a rousing game of rummy…

Jeremy told Papa all about his creations and inventions and tried to talk Papa into building an electric chair on a track that would go from the top of our house all the way down to the basement for Judah to ride on so that it would be easy for him to get around…..

Papa seemed quite amused by Jeremy’s ideas……

but then HONESTLY…who isn’t amused by Jer’s ideas…my sweet, SWEET boy!

Judah finally chilled out when we laid him down on the blanket….I think he liked looking up at the giant tree that we were sitting under.

We played about 10 rounds of rummy, but Xani got bored and dropped out of the game…..

Nana had a good attitude throughout the whole game even though, I whooped her’s and Geli’s butts…..

Isn’t she pretty?

We found this little guy crawling on our blanket…..cute little pink lady bug!

Papa took Jeremy and Xani for an adventure walk through the trails and Jon took Siah down to throw rocks into the water. Siah managed to get soaking wet, and then in true Siah like fashion…..he came back to where we were sitting and a HUGE mole hill sucked him directly into it’s core…

He just threw himself face first directly into a pile of dirt!

I could complain, but it kept him entertained…..

and captivated…..

for ever…..

I think that this was the best part of the whole outing as far as he was concerned. And then……oh, AND THEN..

Then he decided that he was not quite dirty enough…

Oh baby! I think he just wanted another dunk in the river….which we gladly obliged and then we packed up and went home……The End!

Actually, it was the end of that particular adventure but little did we know that it wasn’t the end of the day….there was another exciting adventure waiting for us, but I’ll save that for another post……..

It was a great day and we have some great memories of a fun and special day.

Edited to say: You can click here to see the whole set from our Derby Reach Adventure

Day 6 – Facing Realities

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We had the two older siblings come in today to meet with the doctor and team and to address their questions. Those two have not really handled this well for a variety of reasons. The plan is to tackle their questions, perceptions and misunderstandings head-on.

Jeremy saw Patti crying when we first got the news about Angelica. He didn’t understand what leukemia is. He didn’t even really understand what cancer is. He knows that mom doesn’t cry very often, and he is VERY sensitive to emotions. He sucked up that tension and has let it bounce around inside of him for a bit. He has not been sleeping and has not gone to school for a few days. He did try to get back to school, but it wasn’t productive and coupled with the lack of sleep…

Alexandra has read a lot of books and picks up a lot of information. She heard leukemia, then cancer, then I don’t think she heard much else. She started crying and saying “I don’t want Geli to die.” She has been into the hospital and we have explained that Geli will only be here for a week and that the chances of her being totally healthy are really good. But even yesterday she was still talking about Geli being gone for a long long time and really missing her, and wondering about a bunch of stuff.

The doctor (and we have a very nice, personable doctor, that is really good at putting complicated medical stuff into kid language) set up a meeting for 1:00pm today. Jeremy came with a few random thoughts, rather than questions, but he really needed to see everything calm and moving forward and he needed to know that this time (parents gone and various family members being with them at night) was going to be over soon. Xandra came with a book of questions. She asked why Gel’s hair would fall out, what the chemo actually does, what the best case scenario was… and she really didn’t want to ask but she did, what the worst case scenario was.

The doctor listened and replied to all the questions. He was impressed that jeremy knew that 45 years ago, the survival rate for leukemia was only about 4%. (In case you are wondering, the best case is that Geli responds to treatment, doesn’t get any infections during treatment. The worst case is that she would go through treatment and then have a relapse and have to go through treatment again.) He explained everything that the kids asked and listened to jeremy talk about fishing, guns, shooting birds, and other random stuff.

When that was done, I took those two to Science World and let them burn off some energy doing something completely distracting. I wanted to do something special for them and at the same time get a sense of what they got out of the meeting. My assessment was that they were going to be ok.

The realities are not easy, but in the end Angelica will have a normal life. It will be a change to our normal for a few years, but we will get through it as a family. I am pretty sure now that everyone in the family understands in their own way. And just to prove that, Jeremy and Xandra both went to school this morning and seemed to be happy about it.

Jon