Xandra – Page 2 – xangelle.com

No Clue What We Were Up Against

Sometimes it’s easy to post and sometimes it’s really difficult.

I’ve been finding it quite difficult recently. There are things I want to say, thoughts that I want to share and yet when I go to unravel the mess inside my brain….it’s more difficult than I thought it would be.

Xandra just got back from 3 days away at Camp Jubilee as part of her Grade Seven Grad Trip.

She was so excited to go and while I was thrilled for her, there was a part of me that felt unsettled and uneasy.

She spent about 3 days before the trip packing and preparing and it reminded me so much of last year when we were doing the exact same thing for Geli.

The difference was that Angelica was not feeling one hundred percent.

Obviously, there is a good reason for that now, but back then, we didn’t know. We had no clue what we were up against. I was so pregnant and so looking forward to having Judah. Geli’s complaints of feeling tired were easily explained away by the fact that she was a teenager, and the rash that she had on her legs was probably from some reaction to soap or most likely a virus.

We sent her off to the Camp and when she got home…she was obviously quite ill. Sick enough (and I was pregnant enough) that a trip to the Dr. was very important. I am so thankful that we didn’t wait longer. I’m not one to take my kids to the Dr for every cough or sore throat and there is a good chance that were I not going to have a baby any day and the fact that if it might be Strep Throat….I didn’t want to deal with a highly contagious illness with a newborn in the house…..that we would have waited even longer to take her in. I don’t even let myself think about how much worse she would have/could have gotten had we not gone in to see our family Dr and gotten blood work.

We had no clue what we were up against.

Xandra made it off to the camping trip and I have spent the last few days alternating between worrying and telling myself not to worry. Xandra is well. Xandra is healthy. Xandra is amazing! Yes, this has been a tough year on her (as it’s been on all of us) but we are making our way through this….through the good times and the bad times. We will survive. We will overcome this.

She came home today and we drove to the school to pick her up. As we drove up to the front of the school, every muscle in my body was tense and I kept looking…searching for some sign that she might not be feeling well. I waited until she opened the van door, praying that I wouldn’t hear the scratchy voice of a cough or the nasal voice of a stuffed nose……and at the same time, I’d already prepped myself that she’d been in close contact with a whole bunch of other kids, who had ingested a ton of crap food with very little sleep…..an illness would not be out of the ordinary.

Her eyes looked bright and cheerful. Her skin was sun kissed and bight. She had a skip in her step and a song in her voice as she greeted us and the breath that I’d been holding so very tight let out…….a little.

It’s a hard thing to deal with; having your child be diagnosed with a life threatening illness and then trying to carry on with life. It s not an easy thing and too many times I’ve had nightmares of something horrible happening my other children. Too many times I’ve worried or stressed about things that have never come to pass.

So much of this journey is “too much”…..I know that I have a lot to “heal” from. There are times where I’ve felt traumatized by what has happened and yet I carry on. I must! But the effects of what we’ve been though have left their mark and I’m not yet in a position of strength.

I will be. Every day, I grow stronger and some days I feel like I’ve healed….and then something like these past few days happens and I see that I’m not quite there yet.

It will come. I believe. It must!

Verbal Diarrhea

I’m not sure what the deal is, but today…….I’M TIRED!

I would give just about anything to be able to crawl back in bed right now, but that’s not an option and so instead of feeling sorry for myself – I’ve got to somehow give myself a shake and carry on with my day.

There is so much that I really should be doing and none of it that I really want to do….how’s that for incentive for ya?

Jon and Judah up at Harrison Hot Springs! Love his hair!

Geli had her second dose of Chemo for this round this past Friday and she seemed to handle it a bit better than the week before. It could have something to do with how we’ve managed the meds/nausea, but she felt less sick that the previous week. This is the first “off of the steroid” week and while she didn’t feel as nauseated, she was in quite a bit of pain.

I mentioned before that when she is coming off of the steroid, that her joints can end up hurting quite badly. She didn’t feel bad enough to want to take the codeine or morphine but the constant pain is wearing…..She felt that the pain level reached a 4 out of ten, on the pain scale level. Which I think is enough to have taken something, but she didn’t want to, and so she didn’t.

Fortunately, the pain from her joints has mostly subsided and aside from the random wave of nausea and the odd headache, she is doing quite well. She was at school part of yesterday and has gone again today. Our Doctor figured that she may be able to attend quite a bit of this month, which is a nice bonus as we figured that her counts would be quite low for most of this round….but hey, we’ll take the higher counts as it means more protection from her immune system – YAH for that!

I’m extremely frustrated with Judah….he is the WORST day time napper that I’ve ever had. He might go down for al of 10 minutes and then he’ll wake up crying and screaming. I know that he’s not ready to wake up and yet…..he doesn’t want to settle again and ARGH…..A cranky, crying, overtired baby is not fun!

Neither is a cranky, crying, overtired mom…..

We have a meeting tomorrow at Jeremy’s school to talk about him, and really – there is a lot to that part of the story and I don’t have the time or the energy to get into it….and so, I’ll just say that we are still moving forward with Jeremy and that it’s a tough journey at times, but man, if he isn’t just a lovely little boy with such a gentle spirit. I sure love him!

For the most part, Xandra is doing AMAZINGLY WELL. We took her to the pediatrician about a month ago, I think? and he is treating her for ADD/ADHD and the difference in her is UNBELIEVABLE! She is looking and acting and producing work a lot more like the Xandra from years gone by…….It’s frustrating that this all came about at the same time as Geli’s diagnosis and treatment and I wish that we’d been more on top of things because I believe she went too far down a road that she never needed to go on. We could have caught things sooner. I’m not sure if I mentioned this before, but ADDD presents itself differently in girls than in boys. Typically, girls are diagnosed around 12 years of age when organization is a bit more complicated (as in when Grade 7 teachers start to train the kids to be able to handle the High School organization structure). For us, we were not sure if Xani was just stressed about the Cancer stuff or the family stuff or school stuff or how much of all of the different things played into her stress levels, but to give her some medicine so that at the very least, she can organize and structure her life better……it has made a HUGE difference. Xandra is a very bright little girl and has always done extremely well in school. This year, she has not shown even a part of how capable and intelligent she is and we just wrote it off to the chaos and stress (which I’m sure are contributors) but in the past couple of weeks since putting her on the meds…..her marks have come up drastically and she is better able to plan out her work load….it’s made a drastic difference in both her schoolwork AND in her stress levels. And we are SO thrilled that she is doing better.

The Teen Oncology Group is having another function tomorrow night and they are probably going to Theater Sports. So, Jon and I (and Judah) are headed into town for Wednesday evening. I’m not sure what Jon and I are going to do……any suggestions? We are looking at being there probably around 5pm and having to pick Angelica up around 8:00pm.

If you are local or know Vancouver, what is your favorite thing to do?

15 out of 56

Well, we are 15 days (2+ weeks) into Delayed Intensification 2 which is 56 days long (8 weeks). This is the second to last stage before Maintenance. So far, Geli has had a Lumbar Puncture, one dose of Intrathecal Methotrexate (into her spinal fluid), one dose of Peg L-asparaginase divided into two shots (one in each thigh). She has had two doses of Vincristine and 2 doses of Methotrexate (both of those into her port in her chest).

She has been doing pretty well. There have been some down times, some barfy feeling moments, and a lot of great moments. Some times the chemo makes food and water taste “off” and that sucks. Sometimes, it’s difficult to sleep and yet regardless of how much sleep Geli does get, she feels overly tired most of the time.

Her body is working overtime to heal and process the poison injected into it and she’s fighting so hard and most definitely winning this race.

Geli has been at school all last week, except for Thursday when she had to go in for her last chemo dose. She has no chemo this week and we are planning for another great week at school.

As her parents, we are thrilled to see her attending school, hanging out with her friends, just being as normal as is possible in this crazy situation.

She is working hard on her grade 8 school work and while she’s not done as much work as is required from her school mates, she’s done really well on keeping up to date with the essential assignments that her teachers have given to her.

Angelica and a friend scored a perfect mark on an oral presentation that they have been working on over the past month or so. That was definitely a bright spot over this last week.

We’ve been out walking most days and the exercise and fresh air are wonderful. You don’t realize how much you take your health for granted until you spend a huge portion of a year not feeling well and laying on a couch and then you realize that even a simple walk requires almost more effort than you have to give. BUT….summer’s coming and swimming is important enough that we are trying to build up strength so that we will be able to swim without needing a life jacket or having to rest after 5 mins.

We are really, REALLY looking forward to summer. Angelica will be on Maintenance and we will be defining a new normal and this summer will be a most welcome break from this past year. I think that we are all looking forward to a bit of a relaxing summer.

I’ve been trying desperately to stay on top of the house and have been running at warp speed from morning till night and unfortunately most of the night too (thank you very much children). I’ve had almost no down time and I’m desperate for summer with no homework, a bit more of a relaxed schedule, once a month visits into the hospital, no deadlines……I can’t wait.

We have managed to turn our house up side down and I think its a good thing, BUT…..it’s not without it’s challenges. We did move our bedroom down to the basement along with the two little boys. Geli and Xani are up in what was the master bedroom. Jeremy is still is his room and we’ve moved the “TV/Rec Room” up to the big room that used to be Siah’s. I will try to get pictures soon, but so far this particular room arrangement is working well.

Xani is still struggling pretty hard and it’s difficult to watch her struggle and hurt.

Jeremy is rocking his Lego Root Camp and just being Jeremy. Recently, we tweaked the meds that he’s taking and it’s made a great difference.

Josiah is 3 years old and while the whiny voice and testing of behavior is not the most fun….he’s doing really well. I believe that he’s settled greatly from the initial chaos and while there are still things that we can and will work on with him….he’s doing SO much better. We’ve been trying to color a bit and he’s loves to spend one on one time with anyone. He stresses a bit about not knowing “how” to color and wants to have one of us color “with” him by putting our hand over his, but we keep practicing and he’s getting a bit more confident that he “can” color all by himself.

Judah is getting so big and I can hardly believe that 8 months have past us by. While I’m still not eating wheat (he seemed to have some gluten issues), soy or dairy….the intestinal issues that Judah was dealing with seem to have settled and he is doing much better. I have never really had a baby who has eating issues and yet, Judah is giving me a run for my money.

He will eat rice puffs or rice cakes or potato puffs any time any where, but try to give him some thing that might actually have taste or nutritional value in it and he clamps his lips and crosses his arms in front of his face and uses his arms in a windshield wiping motion to knock the spoon out of your hand.

I’ve tried to see if he will feed himself and it’s very hit and miss and so I’m not stressing about it too much because I don’t want to “create” a HUGE issue. He’ll eat when he eats and seriously…..it’s not like he’s wasting away, eh? He’s quite the chunk!

He has the sweetest personality and is so happy and squish-able and lovable and we are just so thrilled he is ours. (I just wish he’d sleep a little more consistently – he can….it’s just very hit and miss and I think that more sleep would make this whole situation just a little easier to handle.)

All said, we are doing okay! I wouldn’t say that things are the MOST AMAZING EVER, but we are surviving. One day at a time, we are making it through this…….A lot of that is due to you and your prayers, encouragement, love and support……we are so thankful to you all.

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?

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.

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.

Do You Know?

My Dear Sweet Xandra,

Do you know how special you are?

I want to let you know that you are my most precious 2nd daughter and my absolutely favorite Alexandra. There is no one else quite like you. You are my baby girl…..

In the craziness that is our life right now, I want you to know that you are so SO precious to me. You…..YOU……YOU are an AMAZING girl.

I Love you.

I LOVE you.

I love YOU!

I LOVE YOU!

These are some tough times that we are dealing with and I know that often it has you all messed up inside. It’s got me pretty messed up sometimes, too. I’m so sorry that I don’t have the answers that would make it all better or that would make it disappear. I don’t know why this happened to us. I don’t know why this happened to Geli. I don’t know why this has affected our family.

I do know that this sucks and that it’s hard and it’s difficult and that it can be stressful and confusing and a whole bunch of other crazy, crappy things.

You were the most beautiful “fire girl”
even if I did think that you looked like Red Riding Hood

I love it when you come and talk to me about how you’re feeling. It’s okay when your upset or confused or angry. It’s not a problem and I won’t be mad that you’re upset. It’s okay to be upset about this. It’s okay to be upset and angry at cancer. It’s okay to be angry and upset that cancer has affected your sister. It’s okay to be angry and upset that cancer has attempted to destroy your family – physically, emotionally, mentally and spiritually.

It’s okay because although it sucks….we choose to stand and believe the truth about ourselves and about this situation.

We are strong!

We are fighters!

We will win this fight!

We will get through this!

We will walk this journey and even though there might be times when we get tired and weary….it’s those times, that God and our family and friends are right there along side of us. They are carrying us when we are too tired and they are cheering us on every time we put one foot in front of the other one.

I’m sorry for all the times when things are chaotic and it seems like we don’t have enough time or energy. Honestly, sometimes we just don’t have enough time or energy, BUT….this is only a season and although it’s a tough one…we’ll get through this. It won’t always be like this….you can count on that.

You are beautiful. You are amazing. You are so SO smart. Sometimes, I think that you are too smart for your own good, and that your emotional and mental reasoning abilities kinda mess you up sometimes. There are not too many 12 year olds that hold and carry and process the emotional side of things as well or even the way you do. It’s awesome and horrible at the same time.

I wish that you were just an ignorant, innocent 12 year old and that the biggest of your problems was in choosing what clothes you were gonna wear tomorrow or trying to figure out how to organize your homework so that it didn’t pile up on you….But you’re not…..

You are learning some wicked tough life lessons at a very young age and although I wish that you weren’t going through this…..

…..the fact of the matter is that we are going through this. You’ve been through a lot in your young life. From when we lost Nathaniel until now….there have been some experiences that are kinda HUGE and could be overwhelming for some people.

In fact, sometimes they “feel” overwhelming if you look at it all as a whole, BUT…..

But I know that in all of “this” that you are gonna grow up to be the most amazing woman.

How do I know this?

It’s because you are the most amazing young lady.

You have such great compassion and love. I will keep encouraging you to forgive and let go of all of the things that could make you bitter and angry and I know that you will do it. I know that it’s not in you to hold on to the “UGLY” but that your heart is geared to hold onto “HOPE”.

You are a JOY to me and to your daddy and to everyone that you come in contact with.

Your smile, your sweet spirit, your spark, your silliness….Xandra, you are amazing.

When you feel too tired to take another step….when all the thoughts are whirling around in your head like a raging tornado, when you just feel like you might break into a million pieces, when you don’t know which way is the right way or which end is up or down….come and find me or daddy. Come and curl up on our laps and take all the baggage that is wearing you out and dragging you under and let us carry you for a bit. We’ll hold you. We’ll encourage you and we’ll point you back in the right direction….

That’s what we’re here for. To love you, to encourage you, to hold you…..

We are so proud of the young lady that you are becoming.

Xandra, You are amazing!

Do you know how much I love you, Xandra? I sure hope so. I try to tell you and show you all the time, but just so you hear and read it again and again and again…..

I love you, my sweet girl. You are SO precious to me.

I Love you.

I LOVE you.

I love YOU!

I LOVE YOU!