ME – Page 20 – xangelle.com

High Tide and Low Tide

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

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

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

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

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

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

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

We have a quiet week ahead of us.

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

Here are the most current prayer needs and praise reports.

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

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

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

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

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

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

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

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

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

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

A Little Clarity

On Monday night, I verbally diarrhea-ed on here. I hadn’t posted in a while and I wanted to get some of the thoughts swirling in my brain out in the hopes of processing them a bit better.

It doesn’t “fix” anything, but typically, it does help me by making things a bit “clearer”.

I wrote about things being difficult or hard and they are….but I think that the hardest or most difficult thing (for me) is that this is such a long term journey.

It’s not like this will be over in a few days or even a few weeks. We are talking YEARS before this journey is over. The knowledge of that is hard for me.

I try to stay “in the present” and I believe that was something that God led me to over this past year knowing that I would need that piece of wisdom to be able to make it through all of this.

But it is a long term journey and I find the uncertainty of it all to be quite frustrating. We are currently in the second stage of treatment, and after this stage is complete, we have 5 more stages to go over the next 2+ years. Only one of those stages is a repeat of it’s self and so for the second time around that stage, we should know what to expect (except in that repeat stage we have radiation to deal with which adds its own uncertainty and unknowns), but for all the other stages, it’s all new and unknown. The drugs might be ones that she’s had before, but at different doses and with different drugs and there is so much unknown and uncertainty in regards to how Angelica will feel or respond physically and even emotionally and also in regards to the schedule.

I haven’t done so well (in the past) with unknowns and so that makes all of this hard for me.

I like to know.

I like to plan.

I like to organize.

And for this…..I can’t. I can’t even say what the calendar is going to look like because although we know what schedule we are following, the schedule can be delayed by low counts and then everything is once again off…..

This makes “planning” things difficult and any of you who know me, know that I LOOOOOOOVE to plan. So to feel so out of control makes all of this even more difficult.

For example, It’s Josiah’s 3rd birthday today, and looking at the calendar and the schedule of Geli’s meds and this week is a bad time to try to plan a party for him. Geli might be feeling okay this weekend, but her counts put her at risk and so it would be better to plan a party for him in a few weeks when her counts should be high….but, that might not be the case….her counts might still be low or….worse case scenario…she might be in the hospital. That’s not something we’re wanting or hoping or even really planing for, but it is within the realm of “possibility” and that uncertainty is something that I find difficult.

I can look at this whole situation know that one summer, one fall, one winter, and one spring of huge uncertainty followed by a few years of a little bit more known schedule is really not that big of a deal in the “grand scheme of life”. We can do that. It’s not THAT big of a deal and it will come and pass quickly.

For example, I can’t believe that Josiah is three years old. I remember waiting for him to be born and now here we are three years later….time passes by so fast….

But to be sitting in the middle of it all is difficult. It feels so intense and pressured and so SO tiring.

THAT is what weighs on me….and being able to talk about it helps a little. It doesn’t make anything better or take any of the “difficult-ness” away but some of the pressure of it all feels a bit uncorked and eased when I talk about how I’m feeling.

Thanks for your encouragement and comments that let us know that we’re not alone and that you’re thinking of us and praying for us. This is a bit of a weird and lonely time and yet, I know that it’s only a season and that each step further down this road takes us one step closer to victory, freedom and a whole new “normal”.

Summertime Fun

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

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

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

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

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

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

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

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

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

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

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

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

Jon sat and held Judah in the shade….

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

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

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

Papa seemed quite amused by Jeremy’s ideas……

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

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

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

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

Isn’t she pretty?

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

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

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

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

and captivated…..

for ever…..

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

Then he decided that he was not quite dirty enough…

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

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

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

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

It’s “THE CALM” …………

I don’t want there to be any storm following this calm period and so we’re just stopping with, “THE CALM!”

This past week has been – shall I dare to day it – FABULOUS….you know as far as chemo and side effects and Lumbar Punctures and Full Body Bone Scans because of legs that refuse to un-gimp themselves despite physio and chiro and massage and…

Well, We’ve got one full complete week under our belts and Angelica is doing AMAZING.

Honestly, I think that she is feeling better than she’s felt in months. It’s awesome to hear her bossing around and bagging at her brothers and sister. It sounds so “normal”. She was so quiet and down and tired and….well, when I look back, I think she had been sick for a while. So not cool! She has life in her eyes, a spark in her step and… an edge to her voice (hee hee) that has been so lacking for a long time.

The chemo make her feel a little “off” but over all she’s doing okay. We are trying some different options for her with her oral meds and it seems like it’s helping with feeling yucky in the mornings.

Her leg has finally started playing nice and is stretching out nicely and not hurting her any more, and the bone scan showed that she has a fabulously healthy teenage skeleton with no issues.

She is headed into Children’s early tomorrow for another Lumbar Puncture and a IV shot of Chemo. They are going to take her bloodwork and we should know where her levels are at that point. They are expecting her levels to all have dropped or to be dropping and to be at their lowest by the end of this week. This can be a little scary or nerve wracking as we feel a bit on high alert for anything “going wrong”. She could get a fever and end up in the hospital for 2 weeks on a run of antibiotics and that would TOTALLY SUCK!

We are asking for prayer over this time that Geli would remain infection free and that things would just carry along smoothly and that we’d be able to continue along with the treatment plan with no side effects and no delay of treatment. If her counts go too low, they have to delay the treatment until her counts come up….

She is also scheduled to go and pick up her wig this week, and that should be so much fun!

I’m feeling….well, I’m feeling all over the place.

I’m trying to hard to stay on top of things….the house, the meals, the laundry, the kids….and I feel like if I don’t keep going, that I’ll get behind and everything will fall apart or become completely overwhelming. I feel like I’m going in super mega overdrive from the moment I get up until the moment I get into bed and even then….all I can think of is everything I didn’t get accomplished that is piling up on top of everything else on the list for the next day.

I also find that emotionally, mentally and physically, I have nothing in reserve and so it takes very little to deplete whatever energy I had and then I crash.

For someone who thinks she can “do it all” this is so SO frustrating. I feel so upset and angry at myself. I know that our child was diagnosed with cancer and then I spent 2 weeks living in a hospital with little to no sleep before I had a baby and then went home to care for 4 kids for a week, and then headed back to the hospital for another week with a newborn and that I was riding a wicked WICKED emotional roller coaster during all this time, but to see and feel how “off” I am – it’s so discouraging.

Geli went and visited my mom (across the street) on Saturday and so we took the opportunity to run a few errands. I went into the first store while everyone else waited in the car and by the time I came out – 15 mins later – I was DONE! Honestly, Emotionally and Physically, I was spent and yet……..We HAD to go grocery shopping and we also needed to hit another store on our way home.

I know that the easiest thing, would be to just say….well, we’ll do it later. But, honestly, there is so little “available” time with Jon or the van and by the time the evening rolls around…I’m so spent from the day…I’m not doing anything except praying everyone goes down early so I can too.

So, I powered through, got home and lost it. AWESOME!

But, we have groceries, and the rest of the week planned out and taken care of and so at least that’s one thing that I can scratch off the list.

Honestly, things are so “off” around here and its showing in everyone. Everyone is off just a bit. Xani is melting down regularly. Josiah is testing every boundary and doing so in either a whine or a scream. Jeremy is fixated on the computer to the detriment of everything else in life. Geli is addicted to solitaire on her iTouch. Jon is short and testy with everyone and I’m exhausted and so close to falling apart. It’s brutal!

This is so far off of how I “see” my family being. This is so far off of everything that I’ve worked for for years and yet…..right now we are just coping…and barely doing that.

I’m scared. I’m scared that Geli will end up in the hospital for another big chunk of time and I’m not sure that I could handle all of that very well. Obviously, I get no choice…I’d have to handle it and yet, it’s the “very well” part that I’m concerned about.

This is difficult.

I’ve sat down tonight purposing to write something…anything (as it’s been a few days) and yet I have nothing concise or well thought out to share. I feel like I’m just blathering on and on and on with no clear point to make and I don’t want to come across whining and yet…this is hard.

This is brutal tough road to walk and yet, walk it, we must!

It feels like we are just scraping enough energy together to just be able to put one foot in front of the other. There are a million e-mails that we want to respond to. Phone calls that need to be returned. People to be connected with……and no time to do it in. Or even if there is a smidgen of time, there is little to no energy to do it with.

We hope that no one takes it personally, if we don’t respond in any sort of a timely manner.

There are only so many things that we can cram into one day and some days………well, lets just say that most days we feel like we are sinking and a good day feels like we’ve treaded water all day and just managed to hold steady.

I’m trying to believe that things are getting easier and I think they are. Slowly, but surely…I think they are. I hope?!?

One day! One hour! One minute! One breath!……..

Time Flies By…

It’s hard to believe it’s been over a month since Judah Zane joined our lives.

My Sweet Boy,

You are an amazing addition to our family. I am so thrilled that you were chosen for us. I still feel like we hardly know you and yet I can’t imagine you not being a part of our family. You fit in perfectly with all the crazy, passionate, vocal, chilled-out, intense rest of us.

In just the last week, you have managed to go slight;y hoarse from screaming when we don’t pick you up fast enough. You are so relaxed and laid back and easy going, and then……..BAM – there doesn’t seem to be any wind up or lead up time, you just go from happy to wicked pissed, and as soon as we pick you up, you’re okay. It’s equally amusing and slightly horrifying. I wonder if this will carry on or if you’ll figure out that we’ll come even if you just start to get upset. I figure that as the youngest of 5, you just want to make sure your voice is heard?

You were 13 pounds 12 ounces at your last weigh in almost 2 weeks ago. I wonder what today’s visit will say that you weigh. My arms and shoulders can totally testify that you’re even heavier now than you were then. At some point I expect to have some serious “pipes” as you don’t like to be put down and yet you weigh a ton…..You definitely like to eat. And yet, with all that you eat, your night times are so SO sweet and for that I thank you and am willing to carry you to the end of the earth.

When you fall asleep around 9pm and then typically only wake twice in the night to nurse, I can forgive you much…..heck, there are many nights when your (almost) 3 year old brother is up that many times (or more….)

I love to look at your little ears and your sweet head, your chubby thighs and to see you wrap your sweet little fingers around mine. All these little parts of an amazing whole….you complete our family, little one!

As I mentioned already, you love to be cuddled and held and you could sleep forever as long as someone is cuddling you close. You are so “squishy” and there are time when my heart wishes I could express the depth and fierceness of my love, and yet no words seem adequate enough and so I just hold you, whisper words of love and pray that the magnitude of my love for you is just “known”.

This is a crazy, CRAZY time to born into, and I pray every day that I’m able to take each and every moment and love each and every one of you kids like it were my last day on earth. I want to live and love and laugh with no regrets and I want to pass that same desire on to each and everyone of you.

Time seems to fly by so fast and before I know it, you’ll be as big as your older sister….it seems like I just blinked and now she is a teenager…..

…and so I hold the memories of these days close to me. Days when you were tiny (comparatively) and slept and fed and cuddled and smiled because of the gas bubbles. That one seems to carry on though….your brothers both take great delight in their gas escaping both ends and I’m sure you will continue to find joy in that as well.

I believe these feet will take you place in your life that I could only dream of. You are created for greatness, my son. I believe this strongly and I will continue to encourage you walk the path that you are destined for, whatever that may be.

Welcome to our lives, my sweet boy. Welcome to this world. It’s gonna be a better place because you’re a part of it.

Love your Momma

ps. Click here to see the rest of the photos in the set.

Round 2, Day 1

Jon took Geli into BC Children’s this morning.

They left before I had even crawled outta bed. They had an 8am appointment and so they left here at 6:40am. I was awake when they came in to kiss me good bye, but was still a little groggy. I had both Judah and Josiah in bed with me at that point. Our morning sleep in was cut short when Siah rolled over and slammed his head into the corner of Jon’s bedside table…..what a morning wake up call. Man!

I do know that Geli was the first appointment, and that she had the Lumbar Puncture, and then received her two chemo meds, had a big long visit with a physiotherapist, who seemed determined to figure out what’s up with her leg (it’s still bothering her 3 weeks later) and that they left to come home around 4pm. Aside from that, I don’t know much as I wasn’t there. Jon says that everything went well and that Geli felt pretty positive all day. She ate when she got home and then headed immediately up to bed.

We do have to wake her to give her another chemo med, her antibiotics and some gravol, but she should go right back to sleep again – at least I hope.

We have been told that this week should be a fairly good week for her, it’s next week that they are concerned about. Her counts could go quite low again….low as in decimated and we’d be once again on high alert for any possibility of infection, fever or any other indicator that something might be wrong.

We are praying with desperation that she stays as healthy as possible and that any brutal side effects would just avoid us……

Then, we have 2 weeks where we wait, hope and pray for her counts to come up again, and then we start the 4 week cycle all over again. 2 weeks on meds and 2 weeks off….Absolute best case scenario…this whole cycle is done in 8 weeks…..or it could take longer….which would obviously NOT be the best case…..

Today at home was….interesting.

Xani had a meltdown. Jeremy wanted to play on the computer ALL DAY and sulked and pouted when I kicked him off, Siah wanted to be anywhere and everywhere and to get into everything, and the baby cried when i put him down.

My biggest accomplishment today was that the kids were mostly sort of fed, and I didn’t “lose it” and end up a crying, bawling mess.

From that stand point, I consider today fairly successfull…..from any other standpoint, today was a colosssal failure.

Knowing how much I’m typically capable of and able to do…..makes my glaring lack of accomplishment today so much greater.

I don’t know how anyone does this.

I don’t know how we are going to get through the next month….let alone the next year of treatment….and yet we must!

Have you ever felt like you needed to take a big deep breath and you just couldn’t? The only thing you could do was to keep sucking in these little tiny sips of air….and you wonder just how much time each tiny breath is going to buy you?

This is a long, tough road and I know we will get through it. I’m just not sure how and the unknowns weigh heavy on me. The future weighs heavy on me. I’m feeling pretty weighed down right now.

I’ll be okay.

I do want to say thank you to everyone who has given a meal(s) or a gift card(s) or a card or sent an e-mail or even a comment…..

I keep trying to compile a list of people to send thank you’s too and I feel like my brain is a HUGE sieve. We are so grateful for everything. Every bit of love, care and support is truly felt….Everytime we eat a meal given, or buy some groceries or feel the love sent through some caring, thoughtful words – we are so touched and blessed. You have been such a blessing to us.

I, never in my wildest dreams, ever fathomed that we’d be on this journey. I never ever knew what other family’s who are dealing with cancer went/go through. This is a whole world of pain and hurt and physical, mental and emotional energy spent, that I could never have fathomed before now.

Thank you for everything. We are truly thankful!

Brutal Honesty

I’ve been really struggling with this whole situation.

The whole “my daughter has been diagnosed with cancer and has been in the hospital for a month and we’ve had a baby and lived apart as a family and…..”the list just continues on and on and on and on…..

I think the biggest thing that I struggle with is believing that God “can” heal Geli but questioning and struggling with believing that He’s going to come through for me this time….for her….for us…our family.

There I said it….yup….just being honest….I’m a real person. I’m not so strong. I don’t have it all together. In fact, I’m not sure I have any of it together. I’m just working on breathing one breath at a time most days…and most times right now even that seems difficult.

I know that God heals. I know that many have been healed miraculously and some have been healed with the help of the medical system and yet in spite all of that, I feel so unsure that it might happen for us.

I think this is “my” journey in all of this…….somewhere between trusting and dealing with massive fear….

I’m struggling to find even a mustard seed amount of faith in all of this.

I had a son. He died. I know that he didn’t have to die. I believe that God could have allowed different circumstances to happen in our lives and yet I know that through it all, He walked with us. He comforted us. He carried us. I don’t believe for one minute that He did that (or this) to us. I believe that we live in a world where bad things happen and that He will love, carry and comfort us through the bad things in life. I also believe that He will help good things to happen out of the bad things that come up in our lives.

I also believe that He has the power to “protect us”……..?

and yet……..I dunno…….

I just don’t understand why we’ve gone through the hard things in our lives and why He’s allowed these things to happen.

(Those stupid why’s again……)

I don’t WANT to have to “deal” or “walk through” these things.

I don’t want to be “strong enough” to overcome these situations and circumstances.

I just want my healthy family back together and for all of this to go away. And….I know it’s not gonna happen.

I think of the “process” and it’s such a long process and it overwhelms me. I’m tired. I’m hurting. I’m scared. I’m stressed.

I’m having horrible dreams where my other children are getting seriously hurt or injured and waking up like that is a brutal, BRUTAL way to wake up, let alone waking up to the reality at hand.

I had a bit of a cry the other night. It was “The Ugly Cry – the light version”….. I was in the hospital room, in the dark…and I was so disappointed that we weren’t coming home and going to be together again and I’d been fighting the tears all day. I didn’t want to scare or bother Geli and so I was laying there sobbing silently into my pillow. I call it “The Ugly Cry – the light version” because with “The Ugly Cry” there is typically a lot of noise, amazing amounts of snot and tears, huge volumes of kleenex or at the very least sleeves and shirt bottoms involved and massively, MASSIVE puffy eyes at the end…..well, I was trying to be silent, had no kleenex, did have the snot and tears and when I woke up at 3:30 the next morning and went to the toilet….the beast in the mirror had the HUGEST PUFFIEST EYES and so……”The Ugly Cry – the light version”.

Apparently it relieved a little bit of the pressure, as the next day when the dr came in to tell me that Geli wouldn’t be going home until after Friday….I was okay. Not good, but okay enough to not fall apart in front of him…..

Listening to him didn’t really help my confusion and frustration as he basically said that Geli has pretty much hit the worse case scenario in every step of this journey so far…

Best case, she should have been home within the first week of being at the hospital…and yet she’s pretty much hit every complication that she could have. He’s concerned that following that track record that she might not have cleared the cancer cells by the biopsy this Thursday and may have to continue on this initial course of treatment for another two weeks….which they couldn’t even continue on with if her counts stay so low…..

It’s just has so far appeared to be a bad to worse case….I don’t want to hear that.

I don’t want to hear that he’s concerned or thinking the worse case scenario in regards to Gelica.

I want the best to happen and yet I’m scared.

I’ve been disappointed and let down in the past and this is where I need help……

I need ones to stand beside me and to speak out the positive and to believe for me and with me when my faith is low. I’m already bashing or knocking myself for having doubts and that just makes me feel worse about everything. I don’t need anyone to tell me how I “should be feeling” or what I “should believe”. Believe me, I know…….I KNOW!

And yet, this is where I’m at today….maybe I’ll be stronger tomorrow, but….things are hard right now for me….I’m not speaking for Jon or Geli or anyone else….just me.

I appreciate all your prayers and faith and belief. I want to see the absolute best for my daughter and my family. I want to believe it with every fiber of my being. I’m trying so hard. I know it “can” happen….I guess I just want assurance that it will happen. I’m just finding all of that to be a bit hard right now…..

And….I’m tired. I’m so SO tired. I don’t know where or how to find the strength that seems to be required of me in this situation. I feel like I’m too close to the end of my rope. I don’t know when things will “get better” or ease up a little and allow us to feel like we can catch our breath. It just feels like too much all at once with no chance to breath. Between Geli and her health and the hospital stay, the baby, being apart from the kids, worrying about the kids, being with the kids, being apart from Jon, being over tired, work……just everything….I feel like I’m drowning and I so desperately need things to stabilize so that we can catch our breath and re-group. I’ve gone beyond running on fumes and yet I see no end in sight…..and…..and…..and I don’t even know what to say or where to go from here or even how to end this……..

It’s just where I’m at right now…..I’m so tired and worn down.

Trying to Hold It Together

We had one of the Residents who has been assigned to Geli’s case come in and talk to us this morning.

It seems that her blood counts are currently too low to allow for her to go home, but there is the possibility that they could raise enough by the weekend……BUT……she then announced that the Infectious Disease People like to see 2 weeks of negative counts before they will release a patient and in Gel’s case I guess they were testing for 2 different things and on the 27th had one neg and one pos and on the 29th both were negative for any infection…this would push our release date from Sunday to Tuesday.

I’m not gonna lie….I’ve been fighting tears ever since they said that. I don’t want to cry and upset or bother Geli as she’s not really said anything yet, but I just want to go home so badly. I’m so upset. I was concerned about this and now feel a bit like, “what’s gonna change as of Tuesday and keep us in here for another few days”….its so stupid.

I’m struggling today.

Really, Really struggling!

The Long Cry Home (this one’s all about me)

I drove away from the hospital yesterday afternoon bawling.

I had my newborn along with me in the back of the van, a freak load of stuff that we’d collected over the week and half that we’d already been in the hospital, my labor and delivery bag and Judah’s new born bag…..oh, and WAY TOO MUCH GARBAGE on the floor of the van…..not cool!

The baby was crying and I was crying, the weather was grey and icky and it almost matched my mood. Had it been raining hard – the scene woulda been straight out of a movie.

We’ve been through some tough stuff in our lives, and I’m not sure if it’s the combination of everything or just the immediacy of it all, but honestly, this feels like the worst thing that we’ve gone through….even tougher than losing Nathaniel or having Chris almost die……

I’ve never questioned the “Why’s” before, but I’ll admit that it’s been harder and harder to push those thoughts from my head.

I’m doing better today than I was yesterday, but this is not easy.

I think I knew in my heart that the likely hood of us all going home together was steadily declining, but I hoped….OH HOW I HOPED. I was so grateful to the hospital for allowing me to stay over Saturday night, as I really needed that extra day to prepare myself to leave the hospital by myself…..I wasn’t really acknowledging that was our reality, but I think that somewhere deep down in side me – I knew…..

And…..it sucked every bit as bad as I knew it would…..

Life’s not always easy or happy but we carry on….

You don’t have a baby and expect to spend the first 3 days mostly by yourself…….knowing that every time you selfishly want your husband with you that it means that your other baby is then alone. Or the rest of the time sitting in a room in the Oncology ward watching your firstborn puking after being filled with life saving poison…….. This whole motherhood thing…while some parts of it come easy to me – other parts are so SO difficult. I want to be with Geli. I want to comfort her. I want to help her. I am her mother. I am in tune with her. I know when she’s hurting and trying to suck it up and right now……I’m an hour away from her and can’t do ANYTHING. But, being with her means that I’m leaving my other babies who are not doing so well with all of this either, and so I have to make the worse choices….I have to choose…..Sometimes, having to make choices……SUCKS!

We are all on edge and hurting and confused and nothing about this is easy.

Xani lost it hard last night. Which was AWESOME and horrid. And to be honest….I envy her the meltdown. I want to scream and wail and fall apart and yet I’m scared that if I do – I won’t be able to pull myself back together to be there for the kids and Jon and Geli and we still have a ways to go until we are re-united as a family and until then…..I’m holding down the fort over here and….well….I’m not even sure where to go with this……

I’m upset.

I keep thinking that Jon is going to be missing our son’s first month of life. I wonder if I’m strong enough to handle all of this on my own. I lean so heavily on Jon for so many things. I miss him so bad. I hate not being there for Geli. I hate feeling so all over the place like this. I feel SO EMOTIONALLY FRAGILE.

I cried and whimpered my way home from the hospital, but as I rounded the corner to our street, a HUGE WAILING SOB tore itself from the core of me….the sheer intensity of it scared me and I was too close to home to allow it all to escape and so I stuffed it back down….unhealthy I know, but it is coming out…..I’d probably do better to just go for it, but for now….I’m leaking it out.

For those who prayed for me yesterday, I was able to hold it together while at the hospital in front of Geli, but she’s not a stupid kid….we were all a bit bummed yesterday.

And today, I acknowledge what I felt yesterday. I know I still need to process through some of the tough, core emotions, but I’m trying to stay present…..even minute by minute if necessary. We had to do this with Xandra this morning…..don’t look at the whole day, just the next task on the list….just make your lunch and then we’ll see how you’re feeling…..then eat breakfast and we’ll re-evaluate the whole idea of going to school this morning after that……and taking things minute by minute (and after a good conversation with Daddy) she headed off to school this morning…..and that is a little how my day is going too.

Right now I’m using this as a bit of therapy….being able to take all those thoughts in my head and acknowledge them, write them out and then try to let them go.

Then I need to make a list of things I need around the house and then figure out what to send to Geli.

Then I’m going to look at my e-mail inbox….that thought alone is scary…..let alone actually tackling the actual task. (Your support has been amazing by the way, and I am am so SO thankful).

After that….well, Jeremy has a play at school that I need to go to, and then we’ll just see…..One minute at a time, if necessary.

(I have a bit of a disclaimer for any who might have started reading recently. I’m honest – for the most part – on this website. By the phrase – …..honest, for the most part – I mean that I don’t share everything that goes on in our lives. I’m open about a lot of things, but by no means are any of the posts on this website a clear indication of EVERYTHING that is going on in our lives or inside my head space. It’s a “piece” of the whole….a glimpse of who I am and what I’m going through and by extension, who our family is and what they are going through. I’m sharing bits of myself with you and I’m not unwise. This is a tough time in my life and I’m expressing some of what I’m feeling and what I’m going through. I’m very aware of my mental health and although I seem to be a bit emotionally unstable at this exact moment, I will continue to monitor where I’m at and to listen to my close family and health care professionals regarding my mental health. I’m not asking for advice or input in this area. I’m merely allowing a piece of the trauma and pain of this time in our lives to be open and “out there”. I will be okay. I am okay. Please don’t feel that it’s your job to carry me. I am carried through this and we will make it through this. I know this.

I know that I know that I know that I know….that we will make it through this….sometimes, in life, our feelings don’t always line up with the knowledge that lives in the very core of our being and sometimes you just need to acknowledge the pain and hurt so that you can then, let it go.

This space is an amazing place for me. I can process. i can vent. I can share information. I can be silly. I can be happy or sad…..this website is just a glimpse or a small extension of myself……I’m happy to let you be a part of this, but if you are wondering how to “help me”……I’ll just let you know that your love, support, care, encouraging words…mean so much. You don’t have to fix me…..or make me aware of where I’m at…..I promise. I have ones to do that for/with me. The biggest thing you can do is to love and encourage….and you have done so MARVELOUSLY! For that, I thank you! I don’t know if you’ll ever know the full extent that your love and care, support and encouragement have helped. I read and re-read your comments. They come in at the perfect time and sometimes inspire tears or laughter……but always comfort and love.

Thank you so much for walking along side of me (and us) as we travel this road and although it seems to feel at times like we are walking on loose gravel, I know that the shoes I’m wearing are more than adequate to be able to handle the terrain on this road and that irregardless, I have many hands to grasp onto should I feel tired or like I’m stumbling.

Once again, I say……

Thank You!

You are amazing!)

It’s my Party and I’ll Cry if I want to

I’m sitting in my room over in BC Women’s Hospital on the labour & delivery ward.

Judah and me are hanging out over here, while Geli and Jon are down the hall at Children’s, in the Oncology Ward.

We’ve been over with Geli for a good bit of today and then resting while she was gone for her Bone Marrow biopsy and Spinal Fluid Tap and right now we’re just hanging low over here for a moment.

Today has been an “icky” day for Gelica and a “crying” day for me.

Between the excitement of the past few days, chemo treatment, tests, and wacked out sugar levels, Angelica had a barfy, yucky, nasty day……..she’s had no fever though and right now, her blood levels are within normal range – so for that we are so SO thankful.

I’m hitting the end of Judah’s second day of life and facing the lovely hormonal changes that brings. Add on top of that – very little sleep, a leukemia diagnosis, a week of stress and the looming unknown and you have a sure fire recipe for tears.

I’ve cried off and on today and feel some of the built up pressure has released, but I still feel like I could use a really good cry. Just to release all the pressure that’s built up since my last good cry about a week ago.

I hate this. This is nothing that I ever imagined for my daughter, for our immediate family, for our extended family…….it was unfathomable, until now………

I hurt for her. I hurt for Jon. I hurt for my other kids. I hurt!

I look back at some of the little life lessons that I learned over the last year and see how I can use those lessons in my life now.

Probably the biggest one with the HUGEST impact on me………..I learned through this past year in my exercise class!

Stay in the present!

You can handle just about anything that’s in front of you right now. It’s when you race beyond into the future that you can be overwhelmed. I can handle today. Tomorrow I will have the strength that I need to get through that day. If I try to imagine or figure out or plan for the next week or so, or month or 6 months from now…..its too much! The unknown is too great and overwhelming.

So today, I cry and I process and I hope and I cry some more.

In the middle of my tears, I am aware of some blessings. I am off my feet, even if they have swollen up to elephant size again. I have some amazing quiet, one on one time with my newborn. I’m still with my “baby” even if I’m sleeping down the hall from her. We are being cared for and supported in so many amazing ways by so many amazing people. In the middle of all this chaos, I am blessed and I know it. That doesn’t mean I’m grateful that we’re walking this road, just that I can see some pretty rocks on the path in spite of the dark clouds and rain.

I’ll get through today and when tomorrow comes, I know I’ll be able to get through it as well.

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