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!
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.
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 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.
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.
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.
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’ve got a bunch of pictures that I want to put up here and some stories that got lost in the chaos of the two weeks in the hospital and the subsequent 1 terrible, horrible, no good week that I’ve not blogged about yet….so I’m gonna try to catch up and update all at the same time.Â It’ll either be brilliant or a massive verbal diarrhea – We’ll see, eh?
I’ve received a few requests for our address and also a few offers to help out and while I am so appreciative and thankful – this “humbly accepting help” and not just “telling everyone that it’s no big deal, that you can do it all on your own“……this is difficult.Â I’ve wanted to respond and say “No, really, we’re fine.Â We’re totally okay. We can do this.Â Don’t worry about it.”Â and yet, it’s not true and so I swallow and breathe and say “thank you” and it feels so wrong and yet I need the help so badly.Â What a totally messed up head trip this all is.Â Man!
I also wanted to mention that I in no way am belittling the help that we have already received in meals, and gifts and finances and help, especially from our family who have helped so much.Â Everyone who has given has made a huge impact and again…..I’m so SO Thankful.Â We would not have made it this far without each and everyone of you.
Lets go back…..Way back, before all the crazy hospital time.Â Actually, “the crazy” started way before this, but we’re just gonna go back to the day before my birthday….well, there’s a little lead up and then we’re going back to the 17th of September.
Geli had been feeling “off” for quite a while.Â It’s been about 9-10 weeks now, but she had been on oral antibiotics for about 6 weeks to try to combat some infection as a result of some ingrown toe nails.Â In the 2 weeks before she was hospitalized, she’d been doing REALLY poorly.Â The nausea and vomiting was horrid and she was on 3 different anti-nausea meds and was still barfing.Â She was not eating a lot and right before they admitted her, she had pretty much stopped eating because she’d been feeling sick and or barfing for over a month and she couldn’t handle the thought of barfing anymore.Â Not eating made her feel worse but the fear of barfing was overwhelming her.
We were trying with everything in our power to convince her to eat, mouthful, by mouthful and at the same time we were attempting to get her to drink the recommended 2Litres of water per day.Â Trying to gauge how much she was drinking versus how much she was throwing up versus how much she might have actually kept down while at the same time “encouraging” her to drink while she was fighting putting anything inside of her……this whole scenario felt like it was slowly destroying both her and me.
All this time, Xani kept asking about having a birthday party to celebrate her birthday.Â Her actual birthday is June 30th.Â That would be 14 days from Geli’s diagnosis, and 4 days from Judah’s birth. It was such an insane time.Â We had vaguely tried to throw something together over the summer but it didn’t happen and we didn’t try so hard to “force” it to happen.Â I just promised her that we’d do something after school started in the fall and we thought that the weekend of the 17, 18, 19 would be good for Geli and her counts too. HA!
As the date got closer, Xani kept asking about it and I very wearily attempted to put something together that would be fun and easy and be a special celebration of her 12th Birthday with her friends.
Angelica helped me to decorate the house on that day and the distraction of it all was good for her.Â
We made her a hat just for fun and also made flag streamers.Â I dunno if we even got any pictures of the streamers?
Here they are….you can see them peeking out of the top of the photo…..as I’m going through these pictures and talking about this event…it honestly feels like it was a life time ago and not just under a month ago.Â My life has some bizarre “time warp thingy” going on right now.Â Everything feels like it happened a million life times ago or like it was yesterday and there is no rhyme or reason to it.
She had asked about having an ice cream cake from Dairy Queen.Â We typically don’t eat dairy and ice cream would definitely fall under the “dairy” category.Â In the past, I’ve baked a cake that Siah (with a dairy and egg allergy) could eat or else I’ve just bought a cake and gotten something else similar that Siah could eat.Â The reason why the rest of us don’t eat dairy, is not because we are allergic to it, but the rest of us have sensitivities to it and it makes us feel pretty nasty if we eat it.
In the middle of all that was happening, I had the bright or maybe insane idea to “make” an ice cream cake.
I ran out to the store and boughtÂ 3 tubs of soy ice cream – one chocolate, one vanilla, and one strawberry – and a bag of Oreo cookies.
I opened up all the cookies and scraped out the insides and then crushed the cookies into crumble.Â I let the ice cream soften and then started building.
I put a layer of Chocolate into a pan, and then smooshed the cookie crumble in on top of it.Â I, then, added a layer of the strawberry and then the layer of vanilla.Â I sprinkled the remainder of the cookie crumble on topÂ of the cake and added gum balls all around the edges.
It looked fabulous and tasted great and the best part……..it didn’t make anyone feel icky because of the dairy.
Xandra had a great party and enjoyed herself.Â I was just so glad when it was all over.Â How sad is that?
It’s been almost a week since my last post and we’re still trucking along.
The chaos hasn’t really settled down as much as it’s just shifted or changed direction.
Geli has completed the first two weeks (out of 8 weeks) in this second stage of treatment. She was in the hospital yesterday for another lumbar puncture (with accompanying chemo into the spinal fluid) and then received one chemo drug through her IV and another chemo drug that gets given by two shots, one into each thigh.
She walks away from the day with a sore back, a headache, two thighs that feel like they’ve been kicked by steel toed boots, an upset tummy and some serious fatigue. She woke up this morning feeling really off and has spent the day on the couch or hunched over a bright shiny silver bowl. I’ve given her a substantial dose of Codeine and she is sleeping right now.
She’s doing well considering what she’s dealing with, but it’s not all sunshine and lollipops over here.
I had a really bad day on Sunday. It started out okay and somewhere along the line I ended up feeling completely overwhelmed by everything and then spent the rest of the afternoon/evening crying. If all of “this”, the emotions swirling around everything comes in waves, then Sunday was definitely a low tide day for me. I managed to wake up on Monday morning and things were a bit better, but when the evening rolled around and I needed to decide if I were going to my exercise class or not……I forced myself to go as I need to go for emotional and mental reasons as much as I need to go for physical reasons.
I find that if I can go and work so hard that I can’t really think or focus or concentrate on anything else…..it gives me a break from everything and then I feel so much more able to jump back into the thick of everything and deal with it all from a position of strength…..and so I went. And….surprise, surprise! I felt a lot better when I was finished.
We have a quiet week ahead of us.
This second stage of Chemo is a total of 8 weeks. There are 2 weeks of intensive everyday treatments, and that’s followed by 2 weeks where she’s only scheduled to be in at the hospital for 1 day per week. This week is the first of those 2 weeks. Then we do two more intensive every day weeks and then 2 more weeks of 1 day per week.
Here are the most current prayer needs and praise reports.
Angelica has done amazingly well as far as side effects go and we are so thankful for your prayers. Some of the most common side effects from the drugs she’s currently on are mouth sores, nausea and vomiting, fever and low blood counts. Geli has had very little nausea and has only had one real episode of vomiting. She’s had no mouth sores, or fever, no real other side effects and although her blood counts are low – they are not as low as they could be.
These are amazing things because she could be feeling SO. MUCH. WORSE. than she currently is.
We would love prayer that she would stay physically and emotionally strong, and that her tummy would stop hurting. She says that she doesn’t feel sick and nauseous most of the time, but her tummy hurts or aches and it would be nice if that would go away. Also, we would love prayer that she would recover quickly from her big day yesterday and that the headache that is bothering her would go away.
Jon and I could use prayer that we would stay emotionally and physically healthy and strong. It is tough to deal with everything that is on our plates right now. Also that we would have time and opportunity for each other in the middle of all this craziness. It’s difficult to find the time, and resources to be able to invest in each other at times like this and yet even if everything lines up well….often we are so exhausted that it feels like too much effort to go anywhere and do anything.
Xani is struggling with all the emotions that she is feeling. She tends to feel extremes when it comes to emotions and has been swinging between stuffing her emotions and exploding with her emotions…..both extremely unhealthy ways of dealing with her emotions and so we are trying to walk her through sharing her emotions in a healthy way and at the same time dealing with the fall-out of the stuffing/exploding cycles.
Jeremy is Jeremy! He has so many thoughts and ideas racing through his head and often it is exhausting trying to keep up with him. Alternately, he is frustrated with us that we don’t seem to get or understand or that we just don’t have the time and energy to put ALL of his ideas into practice. It feels like we are in a constant tug of war with him mentally and verbally. It’s hard for him and us.
Josiah….well, lets just say that Josiah turned 3 on August 4th and I still haven’t written odes of love and adoration to him as I reflect back on the last three years of his life. That may or may not have something to do with the fact that currently……on any given day……I’m about ready to strangle the little bugger. He is my love, my darling, my miracle baby and yet…..
The whining, yelling, screaming, constant arguing, climbing, getting into things…..well, it can all be summed up by saying that he is testing his boundaries in a BIG WAY. Normally, this would be okay and we’d just set the boundaries and enforce them repeatedly until he figured out what was acceptable and what was unacceptable…..with everything else going on and the exhaustion that is a result of everything else going on…….lets just say that our consistency is not as it should be. I honestly think that he senses that things are not “right” that they are not as peaceful, calm and consistent as they have been and the chaos is affecting him negatively much in the same way that it’s affecting everyone else.
We will all get through this, and we keep telling ourselves that its just a season, but if you are wanting to pray….this is what we need prayer for right now…
To everyone who is praying…… We appreciate every single prayer.
This summer has been unusual, abnormal or atypical, to say the least!
We are trying to keep things as normal moving along in a fun and relaxed way while at the same time taking the necessary precautions to keep things as safe and healthy as possible.
Knowing that we are heading into a period of time where Geli’s infection fighting ability is at a low (to non-existent) point, I was trying to figure out something fun that we could do to celebrate the long weekend. We need to be away from gatherings and crowds, and so that make everything a little more difficult and limits some of our regular “go to” family activities.
I figured that we could have a picnic. The kids ALWAYS want to pack a picnic, a blanket and some games and spend an afternoon together, and unknown to the children – that is what we planned.
When we woke up that morning, the weather looked yucky and worse, IT WAS FREEZING!
And so my brain went into overdrive to try to figure out how we could still do something fun, but indoors…..
We have a large shag rug that I figured would be perfect for a little indoor mini Bocce Ball Game. We had a small whiffle ball for the target and 3 pairs of hard rubber bouncy balls in blue, yellow and orange. Then I was going to set up bowling with a bunch of empty water bottles, and a tennis ball. Our hallway is the perfect spot for that. Then I figured that we could pack our lunch basket and put a blanket on the living room floor and I was even thinking of different ways to make smores either in the oven or over the bar-b-que.
I figured that even if the weather didn’t co-operate that we could still have a great and fun adventure of a day.
Fortunately……by lunch time, it was warm and the sun was trying desperately to peer through the hazy clouds. So, we packed everything up, told the kids that we were headed to Derby Reach, got in the van and headed off.
We got there and headed out onto the grassy field to lay our blankets down, and sat down and ate.
We get KFC about once a year and that’s enough to remind us that it’s SO DISGUSTING and then it takes us about a year to forget just how gross it really is and then we order it again….
Nana and Papa came down to join us and then it felt like a party and not just a picnic…
Jon sat and held Judah in the shade….
And Judah was fine for a while but very quickly decided that he didn’t really want to just sit and he informed us of that quite loudly….
Geli, Xani, Nana and myself decided to play a rousing game of rummy…
Jeremy told Papa all about his creations and inventions and tried to talk Papa into building an electric chair on a track that would go from the top of our house all the way down to the basement for Judah to ride on so that it would be easy for him to get around…..
Papa seemed quite amused by Jeremy’s ideas……
but then HONESTLY…who isn’t amused by Jer’s ideas…my sweet, SWEET boy!
Judah finally chilled out when we laid him down on the blanket….I think he liked looking up at the giant tree that we were sitting under.
We played about 10 rounds of rummy, but Xani got bored and dropped out of the game…..
Nana had a good attitude throughout the whole game even though, I whooped her’s and Geli’s butts…..
Isn’t she pretty?
We found this little guy crawling on our blanket…..cute little pink lady bug!
Papa took Jeremy and Xani for an adventure walk through the trails and Jon took Siah down to throw rocks into the water. Siah managed to get soaking wet, and then in true Siah like fashion…..he came back to where we were sitting and a HUGE mole hill sucked him directly into it’s core…
He just threw himself face first directly into a pile of dirt!
I could complain, but it kept him entertained…..
I think that this was the best part of the whole outing as far as he was concerned. And then……oh, AND THEN..
Then he decided that he was not quite dirty enough…
Oh baby! I think he just wanted another dunk in the river….which we gladly obliged and then we packed up and went home……The End!
Actually, it was the end of that particular adventure but little did we know that it wasn’t the end of the day….there was another exciting adventure waiting for us, but I’ll save that for another post……..
It was a great day and we have some great memories of a fun and special day.