Month: August 2010

Exhaustion….

is having your 3 year old son come to bed at 1am only one short hour after you’ve gone to sleep and having him awake and thrashing around in bed when at 2am you hear your daughter barfing. Then to have your husband fully wake you with the knowledge that your daughter has a fever of 38.1F.

Any fever is treated as serious and severe and warrants an immediate trip to the ER at Children’s Hospital.

The magic number that earns you an immediate trip to the hospital is 38.5F and so we called in to the oncologist on call to see what they’d like us to do…seeing as she wasn’t far off. Just so you know, her normal temp hovers between 36.4 and 36.9. We have to take her temperature daily in the morning and in the evening because when your counts are low, you don’t typically present with normal symptoms of infection…you just get a fever!

So when we talked with the oncologist on call, they said to wait half an hour and take her temp again to see where it was going….At this point I was up and Jon was up, Geli was up and Siah was up….Geli was finishing packing her bag as we were certain that she was heading in for a 2+ week stint of an antibiotics run. When there is a bacterial infection that runs rampant, she gets put on general IV antibiotics for a few days while they culture for the exact strain of bacteria and once they figure that out, they give her the correct antibiotics and then they take her blood every day looking for a test to come back negative for the bacteria. Once they get the negative test, then it’s two weeks on the antibiotics and then she can come home……lovely, eh?

This is what we were preparing ourselves for at 2am on a Wednesday morning. Jon was getting a last minute snuggle in with Siah. Geli had a bag packed and was laying on the couch and I was frantically cleaning the kitchen…..all the while trying to figure out how I was going to “do” everything especially when there was no way that Siah was going to sleep anytime soon, and honestly neither was I. Although I could go and lay down, I seriously doubted that I’d be able to sleep until I heard an update from Jon.

Finally, the half hour was up and her temp had gone from 38.1 to a 38.4 and so Jon rang to let them know they were on their way and that the temp was creeping up and they headed in.

I brought Siah back upstairs to my room and put on a movie for him on my laptop. He watched Enchanted, while I lay there waiting for an update. In the early morning hours time seems to stand still, but Jon finally messaged me and really had no update other than they were there.

He kept messaging me with what little information that he had and the end result was that things looked kind sketchy because she had a fever while already being on antibiotics and who knows what that meant and yet her counts weren’t indicating a bacterial infection and they weren’t admitting her, but they wanted her to say until the Oncology Clinic could assess her and it didn’t open until 8am so they were gonna try to rest and hang around until then. Siah’s movie finished after 5am sometime and I convinced him to fall sleep.

I finally fell lightly asleep around 6ish and then Judah woke at 7:30am to eat. Siah woke up for good just after 8am and I’d not heard anything regarding Geli yet.

Jon finally messaged me that they were giving her a IV dose of a big antibiotic and sending her home thinking she was dealing with something viral and that she could recover just as well at home as at the hospital…. She does have to come in tomorrow morning for some follow up blood work and another dose of antibiotics.

It was nice to have them come home. We have no idea where she could have picked this virus up, but this does speak to her compromised immune system. We feel fine, but somewhere, somehow she’s picked up something. Fortunately, her counts are just on the high-ish side of low, enough so, that she can be at home. Were her counts lower, that would not be an option.

But, this is one of the reasons why we must be so careful right now….Her system is just so fragile.

She’s been sleeping on the couch since 10:30-ish about half an hour after they got home. Jon took Siah upstairs and convinced him to fall asleep with much wailing and tears, but in spite of his exhaustion….Jon couldn’t sleep. Sucks!

I’m surprised that it’s already 2pm….I’m hoping that the rest of the day flies by until the moment I can crawl into my bed and that there are no more hiccups and especially that Geli starts to feel better so SO soon!

Bald Is……..

It’s been about 3 weeks since we had our big head shaving party.

I’ve shaved my head 2 more times since then. I will most likely continue to shave my head until Geli’s hair grows back. This will probably be sometime in the new year. I will be completely honest and say that I’m not looking forward to going through the winter bald…..it’s gonna be some mighty bit cold….we’re probably gonna be running our heater a bit more than normal and I guess that as stupid as I feel I look in hats – I’m gonna be getting some.

I really didn’t think too much about shaving my head when we did it. I knew that the possibility was that Geli would be losing her hair at some point but I hadn’t given much more thought to it all except that I knew that when it happened, that I’d shave my head too.

I watched her hair slowly start to fall out hair by hair and then it started to come out in hand fulls. Every morning it seemed there was a bigger handful and her pony tails got thinner and thinner.

I don’t know exactly what she was thinking as she experienced her hair falling out, all I know is that I desperately wanted her to not feel weird or uncomfortable or goofy looking or odd or different or any of the other thoughts that might run through a teenage girls head regarding her hair or lack thereof. I am her mother and I think that Angelica is beautiful. I see the beauty in her face, in the sweet almond shape of her almost black colored eyes, and the high curve of her cheekbones. Her dimples are amazing and her smile is so sweet with such beautifully colored lips. She is beautiful.

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But…..her beauty goes so much further than that….she has a beautiful nature and spirit. She is lovely both on the inside and out.

Now even though we’d had conversations in the past about not being defined by how you look, but by who you are……talking about that and living it are two totally different things.

Here we are at a time in Geli’s life when looks could becoming more important. She’s heading into her teenage years and so often kids just want to fit in. There are so few who truly want to stand out and be “different”. Fortunately for us, Geli’s always kind of walked to the beat of her own drum….but this is taking it all to a whole new level.

You can’t hide bald. Well, you can get a wig…..which Geli has, and I’m just trying to get a good picture of her wearing it. (It’s been day after day of us being too busy, or her not feeling well or the weather being too hot……..do you have any idea how hot it is to wear a wig??? They even sell these little gel bands that you can wear under wigs to keep your head cooler on hotter days! Crazy!) But even with the wig on……you can’t just “do it” like you did your own hair. Especially if you wore your hair up in tight little ponytails mostly every day.

But, your other options are to wear a hat, or a scarf or…..to just wear your baldness out there…

I’ve chosen to just be bald. I want this whole “bald thing” to be as normal as it can possibly be. Or maybe I want the baldness to be a non factor or as much of a non-factor as it can possibly be.

Geli is completely comfortable in her scarves….she’s been wearing them forever and it feels “normal” for her to wear them. She’s also gone just bald too and has worn her wig as well. I’m hoping that the whole “hair” thing will just become a non-factor for our family. I can see us wearing hats, scarves, wigs, flower headbands, and…nothing and choosing to do it depending on our mood or our outfit….more like accessorizing, if you will.

I wore a blue wig out to the mall the other day.

It’s so interesting to be bald. You get so many looks but very few people just ask why? I feel so much more “normal” bald, and to put the blue wig on…I felt so conspicuous….which believe me….blue wig or bald….when you’re 5 foot 10 inches tall….either stands out in a fairly big way.

I can’t help but think about it as I go about our small community. I stand out. I’m not even trying to cover it up. I do wonder if people see beyond the bald head. Do they see me, the person? I know that even at my exercise class there are people who have not recognized me yet? They have not been able to see beyond the baldness. I wonder to whom I’ve done the same thing. What have I not been able to see beyond? All of this really makes you think.

But….if I can even if just in a small measure make this a tiny bit more “acceptable” because believe me…this is not normal – then all is good.

Now, it’s not all bad being bald.

We’ve discovered that there are some amazing perks to being bald.

Things like……

I can shower anytime day or night and it is so easy because there is no hair to wash or dye or style? It’s just in and out and done! AWESOME!

When I get up in the morning to get ready! Dressed, make up and DONE! Literally 10 mins or less! so SO AWESOME!

There is no more worrying about messing my hair up when I pull a shirt or sweater over my head…..the first two weeks were so funny as I’d stretch the necks of my shirts out really big to avoid messing up my hair….and then I’d realize that I had no hair to mess up…

I don’t have to carry bobby pins or elastics or clips around with me any more.

There is no hair for the baby to puke in or grab. (Which is then even more fabulous because then I don’t have to take a shower to deal with the baby puke in the hair)

I’m not trying to get my hot, sticky, sweaty hair off my neck in the summer heat.

I’m considerably cooler this summer.

I can wash my face in the evening and there is no hair to hold or pin back and no worries about getting soap or water in it.

I can put moisturizer on my face without needing to pin my hair back or worrying about getting cream in my hair…in fact, I just rub my moisturizer right into my scalp and whatever little hair there is…..can always use a little extra moisturizer, eh?

I only need one towel after a shower. I don’t need the second one for my hair. Cuts down on laundry, eh?

I’m sure there are tons more Positives about being bald…..or even just interesting facts…..

Are you bald? Have you been bald? Do you have anything interesting to add to this post? Leave a comment if you can think of any other positive or interesting things about being bald….

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.

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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….

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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….

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

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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……

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

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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.

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

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

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Isn’t she pretty?

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

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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!

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

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and captivated…..

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for ever…..

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

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Then he decided that he was not quite dirty enough…

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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!……..