Cancer Sucks – Page 10

To All Who Stand By Us…….

We are all going through our own things in life. All of us….Angelica, Jon, Me, the kids….my parents, my sisters and brothers…..my extended family and even you. We are all going through things in our lives, some of them difficult, some of them painful, some of them uncomfortable or challenging….we all go through stuff.

While Angelica is weathering her own journey and we are there supporting her, encouraging her, championing her…..it’s her journey. She will continue on, through the good days and the bad days.

She will carry on through the good times, the hard times, the difficult times, the excruciating times and what may seem like the impossible times, but she will carry on….

Sometimes, she may need us to hold her up or even to carry her…..to catch her if she doesn’t feel that she has the strength to go on.

Just like her, we are all going through our own journeys. We have days that seem impossible and yet we know we must carry on and that we will get through this….even if it seems (or worse, if it FEELS) impossible.

I had one of those days yesterday. “Those days” remind me to be compassionate to others who may, themselves, be going through one of those days…..or maybe even a series of those days (or weeks or months)….

Some days are tough. Some days you just don’t feel like you have the strength to go even one more step and yet you must…..and so you do. Your limbs feel like mud. You are so tired and all you feel like doing is crying…..and so you do.

It’s okay. We all go through “those days”. You’re not alone. I’m not alone. We are not alone.

Earlier this week, someone from our community send me this video and I won’t lie, this week has been a rough one for me….and yet the words of this song kept playing on repeat in my head….knowing I’m loved and supported and championed and that I have so many who “stand by me” even when I feel like I’m too tired to go on. Knowing that I have those who will catch me if I stumble or fall….it’s such a huge thing…..Thank you! I pray that each one of you will see and know those who are there for you, in your time of need!

I Won’t Let Go

Itâ€™s like a storm
That cuts a path
Itâ€™s breaks your will
It feels like that

You think your lost
But your not lost
On your own
Your not alone
I will stand by you
I will help you through
When youâ€™ve done all you can do
If you canâ€™t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know itâ€™s dark
This part of life
Oh it finds us all
And weâ€™re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When youâ€™ve done all you can do
And you canâ€™t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Donâ€™t be afraid to fall
Iâ€™m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When youâ€™ve done all you can do
And you canâ€™t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh Iâ€™m gonna hold you
And I wont let go
Wont let you go
No I wont

A Heavy Burden

Hi, this is Jon…. I am sitting beside Angelica tonight as she sleeps in her hospital room. She is still “neutropenic” which means that she basically doesn’t have an immune system, and she is getting antibiotics every 6 hours, but she is basicallyÂ healthy and not doing any chemo at the moment. She tested positive for a bacterial infection last Wednesday and went immediately on antibiotics. She had one day of feeling sickish, and then all better…. except we have to keep the antibiotics going until Friday the 18th (one more week). Its boring and there are lots of vitals checks and hospitalish things that break up any routine, but its boring.

It seems like the other side of the world, Patti is ‘hopefully’ sleeping with the other four kids and it is anything but boring.

Today, Patti called on the phone and cried. The kind of cry that there are no words for… you just hold them and be silent. I think that it is important to know that Patti is one of the strongest women that I know. She is determined, sometimes stubborn and she can bare a lot, but I think that she is at breaking point. I’ll sum up what is going on at home while I am not there, but I am sure that I am not anywhere close to doing it justice.

Everyone has been sick. Patti describes it as a plague that has hit our house. Xandra, Jeremy, Siah and Judah have all had a run-in with some sort of flu virus. This means that they can not come visit and I cannot sneak home to help. We are separated by a barrier that represents keeping Angelica safe until her immune system recovers. Most of the kids have gotten better, but Judah is still not completely clear.

Emotionally, Xandra and Jeremy got thrown when we left. It seemed like life was getting to a normal rhythm after the summer and fall of hospital stays and sickness and coming to grips with the battle of cancer. We were always tired, but life seemed like it almost settled a little. That was until we had to make an unexpected return. The two older kids came completely apart. I was brought to a new realization of how fragile things were, of how fragile they were. There were lots of tears, lots of things forgotten, and no real way to deal with it… dad and Gelica had to go again and the uncertainty for them returned. This has also had an impact on how quickly they respond to requests, which means Patti has to do more to keep them moving in the right direction.

Jeremy was diagnosed officially with a Learning Difference (used to be called learning disability), and the general consensus at that meeting was the he may fall within the definition of Aspergers. This requires a screen with a pediatrician and today was the day for that appointment. This has been something that I have normally taken care of, so Patti had to steal herself from everything else and get up to speed on what to say to the doctor, and take Jeremy to that meeting, which I had given her the wrong time for, so she was late and was scolded by the receptionist… tears flowed… the meeting did happen.

Josiah is a precious 3 year old, and he needs attention. Patti has realized that she hasn’t played with him or coloured with him a lot and realized a few weeks ago that he doesn’t even know how to hold a pencil. Although this might seem trivial in the face of everything else going on, to a mom, there is some guilt that important things are being neglected. Nana Karen (Patti’s mom) has been a real help with Siah… but there is added stress.

To top it all off today, Patti had an appointment with our family doctorÂ this morningÂ to look at her arm. Because Judah is such a big baby, carrying him is causing damage and a lot of pain (the kind of pain that keeps you awake at night) to Patti’s arm. Judah has been hit with the same bug as the older kids, and so we asked if the doc could see him too, which he agreed to.

When the doc walked in the room, he immediately asked if there is a family history of asthma, and indicated that he believes at first glance that Judah may have asthma….. On top of all the food interactions that we have found, and the digestive issues, and cancer, and ADHD, and Aspergers, and emotional instability and lack of sleep,andÂ Judah teething, and Judah waking everyÂ 45 minutes or so at night,Â and family separation, Patti was given a prescription for some steroids for Judah’s lungs that she had to go and pick up.

This is another brick added to the load, even if it turns out to be something else there will be days of thinking and stressing and learning… more things to carry.

As she sat outside the pharmacy, she called. She called and she cried. She cried and then she carried on. She ordered the meds, then picked up Jeremy, then went to the pediatrician, then she went in on time and was told that she was late, then she cried, then she made it through the rest of the appointment with a plan to go forward, then she went back to the pharmacy and picked up the meds, then she drove home and said hi to Josiah and left him for the night with Nana Karen, then she finally made it home to be with Xandra and finally she had some time to talk again about Angelica and her treatment and the infection and the next steps for her.

Patti is amazing and the mother of 5 amazing children, each with a special need for attention and it seems all need that attention right now… for good reason, but compiled, it makes for a heavy load. Patti is carrying it all, but just barely.

If you are able to take a moment to pray for her, she needs:
– sleep
– relief from pain in her shoulder
– healing from whatever is bothering Judah and his breathing
– healing and health for everyone in the family so we can visit each other
– Angelica’s ‘Neutrophil’ count to come up so she is not so prone to infection
– Jeremy’s Asperger screen to be prioritized high and for this process to not take too long
– Alexandra to feel emotional stability, and for the right tracks to open up for her to deal with all these feelings
– and for Josiah to not feel sidelined in our family.

Thanks,
Jon

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!

Just Holding On

If you’re thinking about us and able to pray for something specific…..

Jon and I tired!

We are feeling the effects of the last 7 months of stress and we’re exhausted!

I’m not feeling depressed and/or sad, just unbelievable tired and really worn down. In some ways we are looking forward, excitedly, to moving on to the final maintenance stage. There are 7 stages of this Leukemia Treatment. We’ve completed 3 and are 1 week away from completing the 4th stage. There are 2 more “active” or “intensive” stages and then we enter the maintenance stage which will last until the end of September 2012. But basically, Angelica should be finished the end of stage 6 somewhere around the end of May/beginning of June. It’s getting closer. We can see it. We can see that there is light at the end of this tunnel. We are excited about this. We are looking forward to what amazing adventures this summer will bring for our family after a year of intensive chemotherapy. Looking forward, we are so excited.

And yet, physically, we are exhausted!

Our bodies are so tired. We have been going so fast, so hard, for so long and we are finding that the pace and stress are taking their toll.

I’m finding that mentally, I’m not as sharp and “on the ball” as I was and I totally believe that it’s the fatigue affecting me. It’s affecting my ability to plan and organize and remember and keep on top of things. With 7 people in our family, chemotherapy, schedules, doctor’s appointments, school events and homework, counseling appointments, family organization, etc…..I’m finding that things that would have been a snap for me to do, co-ordinate and remember…..well, I’m dropping the balls on lot of things and this only adds to the chaos. In the long run, this ends up placing more demands on our time and energy and that’s not cool. Physically, I’m in constant pain. I’ve hurt my arm and shoulder carrying our sweet (but very heavy) baby while still trying to accomplish everything that needs to be accomplished. The constant pain is wearing and yet…..things still need to get done. I’m trying to walk the line between actually “damaging” my arm and waiting and hoping that things ease up over here.

Jon and I are lonely for and missing each other. Our “time together” and “relationship” are another thing that has received a blow from this whole situation. We are doing okay. Don’t get me wrong. Our marriage is not “on the rocks”, we are just missing each other terribly. I would say that instead of “growing” closer together right now, we are just “holding” and sometimes……just holding steady is okay.

We know that we have the rest of our lives to make up for this time, but that doesn’t change the fact that we are missing each other right now. One of the hard things about right now, is that when we do have the rare opportunity to “be away from it all” and to just “be together”….the thought of organizing and planning an evening requires more effort than just keeping on, keeping on. Often, its more difficult to have to arrange someone to watch the kids and to try to figure out where we can park our tired selves for a few hours….and at this point, we are so tired that we can hardly form coherent sentences, let alone carry on relationship building conversation and so we end up frustrated and still tired.

I keep telling myself that this is only a season. I know this. I know that this time will pass and we will not always be in this position, but that doesn’t change how tired I feel “right now“….or how difficult all of this is.

This is a difficult time and we are trying desperately to just hold on.

So, if you’re thinking about us and able to pray for something specific…..

We’re tired and need to be able to hold on for just a little bit longer.

Thank you!

What a Blur

This week has just flown past.

Not in a good, awesome, I wish it would have slowed down so we could have enjoyed all the wonderful goodness that we could possibly get, but more like a….I’m so tired because no one in this house is sleeping and the days have now run into one ginormous blur and I just want to be a bear so that I could hibernate for an entire winter.

Eating and sleeping….that sounds about perfect to me, right about now.

Jon and Geli have gone into the hospital to check her levels as we suspect that she may need either red blood or platelets….or both.

So Today could be a LOOOOONG boring day for them, but if she does get blood and/or platelets, it might help her to feel better. She’s been feeling really off and I believe it has to do with the Ara-C. I am SO incredibly thankful that she only gets 2 weeks of that drug as opposed to the 4 weeks of it, last time around. I don’t know how she would do if she had to take another 2 weeks of it. It’s a pretty hard core, nasty drug. We believe that she’s hit the bottom of the valley and it headed back up the mountain – figuratively speaking, but she’s still feeling like she’s stuck somewhere in a foggy, dark valley and it’s hard when you can’t see the light or the top side of the mountain….if ya know what I’m saying.

Basically, she’s tired. This is a HUGE and LONG fight and she’s very tired.

Judah’s been acting like….like…..well, like a baby and waking every couple of hours in the night. I’m waking for him to cycle back out of this nasty stage and back into the “only waking once a night” stage. This current stage sucks and I much prefer to get “actual” sleep.

Do you know how fast a family of 7 can take a house from clean to “not very tidy”? It’s pretty much instant! Boooo – and that is why I HATE cleaning!

I’d really like some chocolate or a cookie or something else that I probably shouldn’t have……You know, something with gluten or dairy and sugar.

And, that’s all the time I have for today as the baby just woke up from his incredibly short nap……..SUCKS!

Oh well, I’ll try to find some rest and joy and I’ll meet ya back here later.