Gelica – Page 9 – xangelle.com

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.

Here and There

Well, while my family is split up for the next little bit, we decided to send each other pictures of what we are doing so we feel a little less separated and a little more involved.

Here’s what Geli and Jon are doing at 9:46am. They made Eggs & Toast and are eating them in the Kitchen on 2B….We are so thankful that they are on 2B (the 2nd floor of the oncology ward) with access to a kitchen so that they can eat good food and not be stuck with the hospital food. While the hospital food is not “HORRIBLE”, it’s not “DELICIOUS” either.

Here at home, we had sent the kids off to school and were thinking about putting the baby down for a nap. But instead, we took a picture on the stairs.

This was my view at 11:41am…..I’m working on this post, Siah’s watching a movie and Judah’s just chillin’ and eating some steamed taro root cubes.

11:49am and Jon& Geli are up on 3B (the main Oncology ward) and are playing a little air hockey. Jon is WHOOPING Geli’s butt!

They’ve discontinued one of Geli’s Antibiotics. She was on two different ones and now she is only on the broad spectrum one. The cultures that they’ve been doing have all been negative since the 4th day in. Now we are just waiting out this round of antibiotics before she can come home. Aside from feeling a bit “off” first thing in the morning, she’s feeling fabulous. Her counts are still really low. For example, the number that indicates the amount of infection fighting “soldiers” needs to be over .5 for her to even consider going to school….as of this morning, that number was at a .08….so she really has almost no ability to fight anything off right now. We are praying for her numbers to come up quickly. She can’t even start her next round of chemo until that number is at a .75…..we got a ways to go before she hits that.

12:50pm Sometimes, this whole toilet training business is harder than it seems…. He called me to help him and this is how I found him…

1:13pm Judah’s playing with the Shadows on the floor. It’s so nice to see the sun out.

1:18pm Aunty Chelle and the Cousins visit. It’s so nice that they can visit when we can’t…..

1:47pm Geli and Brianna playing a game……

2:17pm This is what over tired, a sore throat and teething looks like….

2:31pm Sleep…..Sweet Sleep!

2:47pm Playing Air Hockey with Baby Zach (with a little help from Aunty Chelle)

I’ll be updating this post with the rest of today’s pics as they happen……

Oh, and if you haven’t yet, would you go here and help me out? Huge thanks to all those who’ve already left your suggestions, I love hearing what you all have to say!

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?

I need someone to hear my voice

I asked Xandra if she would like to write a post and she said yes. Here are her words explaining some of her feelings……

So… My mom wants me to write a blog post. At the moment I really don’t know what to write about. Here we go. Well when we found out about Geli having to go the hospital I surprised myself. I didn’t cry or pout. I was fine. I did have trouble sleeping by looking at my clock. If your wondering why, it was because of the lines that make out the numbers.. I counted all of the lines for each number and well yeah. But the next night I cried and cried and cried and cried and cried because I found out that my Dad and my sister wouldn’t come home for 2 weeks, and until I get over this cough I can’t see them (Please pray for my throat)!!! It’s difficult to not know anything that’s happening to my sister. Yes, I do know that she is in the hospital, that she HAD leukemia and she is getting chemotherapy so she doesn’t ever get it again. I’m just not informed of what the side affects are for each medication or when she is going into the hospital for what drugs or procedures. I have talked with my parents about this and really they say they are going to get me something that I can read to know what is happening but they haven’t gotten around to it yet.
Something else to talk about is school. I love school and what there is to learn but during this season I’m finding it a little difficult. All I mean by difficult is that I have trouble bringing in my homework on time. I try I really do but it just doesn’t happen. That’s all for today

I love you all, Xandra

After she wrote and titled this, I asked her to answer three questions for me…..

1. What is hard about your Dad and Geli being in the hospital?

Having them be so far away. Not seeing them. I’m just used to having dad tuck me in at night and praying for me.

2. What is the worst thing about all of this (the Leukemia, the Chemotherapy, this past 7 months? everything)?

Well the worst thing is that Geli feels crappy lots of the time. It cinda makes me feel upset.

3. What is something good in your life that is happening right now?

Something good that is happening is that (I’m don’t mean to be selfish) everyone comes to see us to support us when Geli is in the hospital. It makes me feel loved.

There is Too Much

Let me ‘splain. No, there is too much. Let me sum up….
Inigo Montoya
The Princess Bride (1987)

Alright, so I’m gonna do my best to try to explain and update.

First, we don’t have a lot of new news……and that sucks.

We do know that Angelica’s blood cultures grew some gram-negative bacteria…….and this is bad, like very bad!

If you click on that link above and scroll down, it lists off some of the nasty bacteria that are gram negative….things like e-coli and salmonella, shigella, and legionella……nasty, nasty, NASTY!

To inject a little bit of humor, into this horrid situation, earlier this morning, we had a doctor wish for her to have e-coli!

Not that he wants her to have e-coli, but it’s possible that if it is, in fact, e-coli then it would only be a 10 day run on antibiotics as opposed to a 14 run on antibiotics. While those extra 4 days don’t seem like they should be a big deal, when you are parenting 4 stressed out, overly emotional children from ages 12-7 months, and trying to “do it all” every “second” counts….forget talking about days!

My sister and Jack, drove Judah and myself into the hospital today to pick up the van, so that the kids and I would have a vehicle for the next couple of weeks. This was such a blessing as I wasn’t sure how we were going to get it.

It was hard to go in and see Jon and Geli and know that I needed to leave in less than an hour to be home to pick up the big kids after school and yet it is so wonderful to see her not feeling so sick. When we showed up, Angelica and Jon were in the kitchen making baked potatoes for lunch and setting up for a rockin’ game of Monopoly.

She is looking and feeling a lot better. That part is equally frustrating and wonderful. On one side of things, she did not get seriously ill and so she’s not holed up in her bed, crying and not eating and barfing, but on the other side, she feels pretty well and is just killing time in the hospital “waiting” until she can come home again. The fact that she’s not REALLY sick is great, but she still has to be in there and that REALLY sucks!

I’m…….well, I’m doing okay! Honestly, I’m upset. I’m really upset. This is a very difficult thing to go through. Having your child diagnosed with cancer is hard. Helplessly watching your child go through chemotherapy is hard. Watching your child get sick and having to go to the hospital, away from you, to get better and knowing that she doesn’t want to be there, away from you, and the rest of the family and her own familiar house, is hard. Dealing with your own emotions about it all is hard. Feeling unable to help the siblings work through their own emotional upheaval is hard. Solo parenting is hard. Being without your spouse, for weeks, is hard. This is all just hard!

On top of it all, Josiah is sick. He started to look and act sick on Wednesday afternoon and on Wednesday evening, after Jon and Geli went to the hospital, my mom took Siah to her house. He’s had a fever, and a cough and a runny nose and was vomiting last night. I don’t know what to do because I’m his mom and I want to be with him, comforting him and yet……to have all of my kids sick over the next few weeks…..well, the thought of having to deal with 4 sick kids and not getting to go in and see either Jon or Geli is overwhelming. The thought of being up with him in the night and then up with Judah in the night, on top of how tired I already feel….. Just the thought of all of that, is enough to bring me to tears. And so right now, he’s with my momma…..how I love her!

And having said all of that, I’m doing okay! I am doing okay and I am not doing okay! It’s all wrapped up together, much like life.

I had a bit of a cry yesterday when we got the news of the infection and after they got home from school, I told Xandra and Jeremy. Last night, they each took turns having their own melt down. It was not a happy day in our house last night. I wish I could play you all the message that Jeremy left hysterically sobbing and screaming into Jon’s voicemail as he was trying to get a hold of him before going to bed. Its so SO sad and upsetting and yet so theatrically dramatic that if it weren’t for real, it would have been funny!

It was so nice to have had a sort of “calm period” over December/January, but dealing with this I can see just how fragile we all are over here. There is some strength that we have in reserve, but it feels more like we found a way to strategically hold all the cracked pieces of our egg shell (life, emotions, etc) all together. This most recent blow…..this time that our family is separated, yet again because of this stupid, STUPID cancer, has left us with a pile of broken egg shells that we are staring at and needing to once again piece together. It might be “easier” because we’ve done it before, but it’s not EASY!

None of this is easy and yet, we carry on because we must.

Angelica will be okay. Jon and I will be okay. The kids will be okay. We will be okay, but this is hard!

I can’t wait for this to be over!

ps. I called yesterday and made my appointment to give blood. Have you considered giving?

Visits in the Night & a Request

Well, Geli’s been feeling a little lower than usual, but we just chocked up it to the fact that she was at the end of a very brutal and intense chemotherapy treatment. We were (and are) looking forward to moving on from this stage and starting the next (every day down is one day closer to end, right?).

not quite ready for the picture…still rubbing her eyes

When she got a transfusion on Tuesday, she felt a bit warm when the nurse de-accessed her and so they took her temperature. She rang in at a 37.5 which is a whole degree higher than her average of 36.5 degrees but they don’t worry until it is over 38 degrees so they sent her home. She barfed on the way home on the side of the highway….fun times there. Her temp was still up a bit when they got home, but by bedtime it was down to 36.9 degrees and so she went to bed and had the best sleep she’s had in a while.

She felt ok yesterday but just not very hungry and her temps were well within normal range when we did take them; but at dinner time she felt hungry but was nervous that she might throw up if she did eat and she also she was complaining of being freezing cold.

being goofy for the picture

We took her temperature and it was 38.3 degrees. Seeing as her white blood count is almost non-existent, that is a scary number and so we had to take it half an hour later and then if it was not below 38 degrees – a quick trip into BC Children’s was necessary.

Half an hour later, it was up to 38.4 and so they packed up for a 3 day stay and quickly headed in.

Because her counts are so low, BC Children’s had a room (in the ER) ready for her when she showed up and she was ushered straight past all the other sick children in the ER and straight into a room, mask and gowns and all. It’s pretty serious.

They drew some blood for a culture and gave her a dose of antibiotics and they relaxed in their room until the hospital could find a bed for her. Apparently, the hospital is quite busy with a huge number of flu cases. The winter and beginning of the year was quite quiet and now business is booming…..unfortunately!

They got a room (on the cardiac floor as oncology was full and overflowing) around midnight and tried to get some sleep. Geli slept pretty well, but there were NO COTS to be found in the hospital and so Jon had to sleep on a fold out chair.

This is a nasty little piece of work, but it’s all that’s available. Not fun! It’s just about 6 feet long which is a little short for Jon, not to mention the uncomfortable bump in the middle where it folds out. So, while Geli was able to get some sleep…..Jon wasn’t. Not cool!

not cool…….

Geli’s feeling pretty good this morning, but her temp is still up and is very possible that it’s one of 2 things….either this is a neutropenic fever or a virus. The other option is a bacterial infection, but we’re really hoping that’s not the case.

I have a request for you all to consider.

Have you ever given blood? Have you thought about donating blood?

Now would be a REALLY great time to do so…..

The blood banks are low and when Geli needed blood on Tuesday it took a while for her to get some as the blood banks are low and needing to do some juggling to be able to accommodate the need.

If you’ve ever given blood or have thought about giving blood, now would be a great time to do so. If you haven’t thought about it, give it some thought. In Canada you can call 1-888-2-DONATE and in the States I believe you can call 1-800-RED-CROSS. I’m not just asking this because of Angelica, but for all the people out there who need help. Shortages are never cool especially when we can do something to make a difference.

This morning….looking cute

I’m calling today to book my next appointment because Judah is over 6 months old now and I’m allowed to give.

Could you think about helping?

I know that not everyone can give and that’s ok. I’m not interested in pressuring anyone, this is just a request.

Thank you!

I’ll post more updates on Geli as I know.

ps. Our kids were quite upset last night about Jon and Geli going into the hospital last night. It was a bit unexpected for them and a bit of a shock. If you are thinking about them, you could pray for them. Both Xani and Jeremy were up until after 11pm stressing and worrying and on top of everything else, Josiah is fighting some sort of cold or something. (It’s possible that’s whats affected Geli, but who knows… he only started feeling off yesterday) Thanks for all your love and support!

Update for Tuesday January 25th

Today is a busy day over here.

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

Their day will most likely look like this.

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

That’s a whole 12 hour day……YUCK!

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

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

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

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

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.

Other Side Effects

A little perspective from me (Jon)…

I remember clearly the January day in 2005 when Patti looked at me with a worried look on her face and said that she wasn’t feeling the baby move. I remember the Sunday afternoon, feeling tired and wanting to take a nap. I remember thinking about the emotions of a pregnant woman and being thankful that this pregnancy was getting close to a conclusion. I said to Patti, “What could really be wrong? If you haven’t felt him move by later this afternoon then we can go to the hospital and they can do their Doppler thing and you can hear the heart beat and they can tell you that everything is OK.” Then I went and took a nap.

The events of that day are forever embedded in my mind because that was the day that I lost my naivety. As you can discover from reading older posts, we lost our son Nathaniel. That was one of those things that was “never going to happen to us”.

I’m not sure why we tend to excuse ourselves from tragedy, but we do. We think that “bad things don’t happen to good people.” We think that if something bad happens once that we have “had our share of problems” or “paid our dues”, implying that tragedy will over-look us in the future. Coming face to face with tragedy, illness, death, financial catastrophe may do many and different things to each person, but one thing is common to all, we loose some naivety.

Loosing our son rocked us individually, it rocked our marriage, it changed our perspective on life, on relationship with God. It made us stronger and it made us more fragile. Having Angelica diagnosed with Leukemia this summer took another blow at our naivety. I can’t say what the end result will be, because we are still in the throws of shock and coping and cleaning and sanitizing and the emotional randomness that exists in our home. I can say that loosing naivety makes you a little weaker; not as bold and unquestioningly confident.

I called this post “side effects” because side effects are the unintended or unexpected or unpredictable consequences to an otherwise straightforward course of action. For example, Angelica gets a drug that will help to stop the reproduction of Leukemia cells and at the same time build up blood marrow… the side effect was temporary diabetes.

Getting to the point… Blood cancers are often discovered while treating “flu like symptoms” and when those symptoms present in another of your children, there is nothing to stop you from mentally wondering “what if”… The other night our baby, Judah, was feeling ill. He had a fever and signs of the flu. He had also had some sort of digestive problem where he has had a lot of diarrhea and sometimes a bit of blood and mucus in his stool. As the evening wore on, I could see that Patti’s anxiety was growing. As we went to bed, Patti was really concerned and I was laying there beside her and felt unable to console her… or myself for that matter. I can no longer say “everything is ok”. I can no longer say “you’re over-reacting”. I can also no longer shrug it off and forget about it. I am now aware that this kind of thing can happen. I am now aware that it can happen to good people. I am now aware that “lightning can strike twice.”

I brought this up at BC Children’s hospital at our last appointment and discovered that the oncology clinic there commonly writes orders for blood counts for siblings and parents of oncology patients, because as it would turn out, this is a common “side effect”.

After seeing a doctor, and checking things out, we know that Judah is OK. He had the flu and is mostly healed and is acting much healthier, but the naivety that something could go wrong is gone. Now this doesn’t make us pessimistic, where we sit around expecting catastrophes all the time… far from it. We expect that things will go well with us and we expect there to be blessings that come our way. We actually remain optimistic… but when “symptoms” of something negative start to appear, they are not as easy to dismiss.

~ Jon ~

Already There

Angelica, Have I told you that I love you recently? Have I told you HOW MUCH I love you?

I do. I love you SO SO MUCH.

It’s not necessary for you to shave your head. Not now, not ever. If you don’t want you, you don’t have to.

There are aspects of this whole situation that suck and the whole “losing your hair” thing is one of those things that just SUCKS! It’s “not” really that big of a deal, but I think that it’s more “what” it represents. There is a starkness and an “in your face” reality of it all. You can’t pretend that this is not happening. You are then faced (literally) on a day to day basis of the harsh reality this whole journey.

I know that I don’t have to shave my hair. I know that you’ve not asked me to do this and yet I want to. I want to be there with you along this road. I can’t be inside of you protecting you from all the chemo and all the side effects. I cannot calm that storms that rage inside your mind and body, but in this way, I can join you. And although you still currently have hair, it’s looking like it might not be there sometime in the future and I want you to know that…..

1. it’s just hair. It’s not what makes us beautiful. We are beautiful regardless and our hair is something fun that we get to play with, like jewelery or make up or clothes. It’s adorns us, it doesn’t define us.

2. Obviously it will grow back….it keeps doing that and every day that we live……brings us one day closer to the day that we can walk away from the uphill stage of this battle.

3. Even if it’s not necessary for you to shave your hair, or if it doesn’t fall out…….I don’t mind. I just want you to know that I’m already down this part of the road and it’s not bad…..maybe a little chilly in the frosty winter chill (HA) ….but it’s okay.

I know that this part of the whole ordeal is not your favorite, but again….you are weathering this all with so much strength and grace and I’m SO PROUD OF YOU!

You are amazing!
You are gorgeous!
You are so brave!
You are so strong!

I love you!

If you do need to walk on this side of the road….I’m already here and its okay!