Category: CRAP

Normal is gone……and we grieve

I lay beside her on the bed tonight, cuddling her…my arms wrapped around her while she sobbed and wailed as if her heart had broken. I held her and whispered quietly, my lips against her shoulder, “It’s okay to cry. Just let it all out.”

The sounds coming from the very core of her….so hurt and wounded and broken and tired…..so very very tired.

She cried until she was spent and then she lay, breathing jerkily, as she tried to settle.

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We went to see the Rheumatologist early this morning. He gave us news that no one wants to hear. Especially not a child……

Double Knee Replacement!

Shoulder Replacement!

Most likely looking at bone death in the hips and the elbow and who knows where else…..

Possibly hip replacement in the future…… who knows about the elbow.

He would need to look at the previous X-rays and we’ll probably need more in the future.

It’s a lot to deal with.

I’m not coping very well. She’s struggling. We are all struggling.

This is tough.

So painful.

She’s looking at knee replacement surgery after treatment ends in 6 months.

She’s already feeling like Grade 8 and Grade 9 have been taken away from her by cancer and now to hear that grade 10 will be taken up with bone and joint issues…..

This just feels like too much.

For all of us.

We are hurting and wounded and broken and in the moment, it feels impossible to think about how we can possibly recover from this.

I try to put as many positive spins on this as I can. To think about those we know who have overcome great obstacles and even faced death and now are thriving, but in the moment……

It’s overwhelming and we cry…..

And we hurt and we wonder how we will carry on and yet…….we must!

We will get through.

Nothing will ever be as it were.

Our old “normal” is gone……never to be found again and we grieve. We grieve hard!

We must find a new normal.

Again.

It’s getting harder and harder to think about creating new normals.

It’s getting harder and harder to try to create new normals.

It’s getting harder and harder.

It’s just really hard!

Tonight is a bad night.

Hopefully, tomorrow is better!

What are you Thankful for?

It’s Monday morning….well, it’s almost noon and I’m sitting on my couch….in the sunshine….in the quiet……well, it would be quiet if Geli wasn’t hacking and couching and sneezing in the back ground. She’s stayed home another day from school. She woke up this morning with some “gastro-intestinal issues” and that’s all we’ll say about that. It’s all just a part of the stupid virus. I can’t wait for it to run it’s course and be gone from our house.

My mom came by this morning and has taken my boys for a walk. It’s nice cause they’ll get back, we’ll feed them lunch and then the baby will go for a nap. That’s some good timing, as far as I’m concerned.

Things are okay this morning. I’d be lying if I said that I bounded out of bed this morning, ready for the day. Certain that today was going to be a good day. It was more like I rolled out of bed ’cause the baby needed a diaper change. And then I folded 3 loads of laundry before even heading upstairs.

We managed to get breakfast made, school started and the house somewhat tidied and so right now things feel peaceful. I know what’s happening for dinner and I will put it in the oven in a few hours. There are no appointments, or places to be or things to pick up and so today is a quiet day.

I’m noticing that right now, my patience is not at the level it normally is. I snapped at Jeremy this morning instead of calmly explaining to him why it’s not a good idea to shout in the hallway when his brother is still sleeping. I don’t like being rude or disrespectful to my kids. I’m trying to teach them to talk respectfully even when they are frustrated or tired or upset and so to model the very behaviour that I’m trying to teach against……frustrating for me. It’s all a lesson, isn’t it? I get to apologize and explain what happened and how it’s not okay. We hug and move on….it’s just life lessons, but it speaks to me of how little I have to give.

I’m not hopeless. I’ve not given up. I’m just tired. Imagine if you had been walking in the desert for a month and you knew that just over that hill in front of you was a town and there was water, food, a bed….rest……and you just had to make it there. You’re exhausted. You don’t want to carry on, but there is no point in lying down and dying now. The end is close. Your dessert experience won’t last forever, but…..you are tired. You don’t feel like you can take another step. All you want to do is to lie down. But if you do….you will end up losing out on everything that you struggled for….that you fought for….all that pain and energy was, then, for nothing.

Sometimes, you just need to sit down and cry. Let all of the pressure off. And then you pick your tired self up and carry on……that’s where I’m at….I’m carrying on.

We all go through things. Have I ever wished that I was not going through this…..OF COURSE! Do I wish that I had a close friend, someone who really understood……honestly, as nice as that would be….NO! Because that would mean that you were going through this and I wouldn’t wish that on anyone. Sure, I’ve looked at you and wondered why “I” am going through this horrible time in my life. And then I remind myself that WE ARE ALL going through things….Life is a constant state of living and dying…of good and bad….of tough times and easy times.

I’m so aware of the tough times right now because there seems to be so many tough things going on in my life and yet, I try to keep aware of the good things in front of me….I have so many good things. I have an amazing husband….who I don’t get to see nearly enough. But isn’t that amazing that after 16+ years that I want to have more time with him and not less. I have 5 amazing kids. I am all so proud of each of them. They work through their own struggles and come out winning, and loving and embracing life. My family is amazing and well,…..I’m alive and breathing.

Alive is pretty good, no?

Today I’m choosing to be thankful….. I’d love to hear what you are thankful for, if you wouldn’t mind sharing?

I’m thankful for Jon and my kids.
I’m thankful for my health.
I’m thankful for my home.
I’m thankful for sunshine.
I’m thankful for my momma.
I’m thankful for this quiet moment.

What are you thankful for?
 There are no wrong answers……

seasons change……….

It’s been a while since I last posted.

We’ve been trucking along and then……. I don’t know what happened. This last week was horrible and by Saturday I fell apart.

We slept in until 8:30am (That’s a sleep in ’round these parts) and then I got up and went to my exercise class where I managed to finished the first third of the class and then I started crying. And crying and crying and crying. So much so that the girl in front of me stopped her practice and gave me a box of Kleenex. I managed to sort of pull myself together (or not) and hung out through the rest of the class and then went home. And then spent the rest of the day crying and crying and crying and crying.

It’s all just too much.

I don’t know how else to put it. There is too much. Too much for one person to handle. Too Much Stress. Too much pressure. It’s just too much.

Xani got sick about 2 weeks ago with some killer nasty cold. She made it through the first week hacking and coughing and sneezing and then the two littlest boys picked it up. Saturday night Josiah woke up unable to breathe. That’s scarey, eh? His panicking didn’t help the situation, either. But, what would you expect if you woke up in the middle of the night and couldn’t breathe? He had a fever from Saturday until Wednesday when it finally broke. I figured that we were just dealing with some nasty virus. The Baby started in on the coughing on Sunday and rocked out a fever then too. By Thursday night when his fever was still in the 39-40 degree range, I was starting to get worried. He was so cranky. So whiny. So tired. So upset. Not eating, not drinking and starting to not wet his diapers. I took him to the clinic where the dr diagnosed him with a lower left lung infection and put him on antibiotics.

There was a massive issue at the pharmacy because they didn’t have the antibiotics that the dr had ordered and there was a HUGE run around trying to get a new prescription. It was unreal. The pharmacist dude was unreal and we know them by name – We spend a lot of money at this pharmacy. I’m not sure what the problem was today…maybe he had a fight with his girlfriend before he came to work or something….it was awful……we finally got it sorted out and started Judah on the antibiotics late on Thursday night. He was still feverish on Friday morning, but by late afternoon the fever was starting to come down.

Friday morning I got a call from Geli’s nurse, saying that her counts were really low and that we had to stop chemo and that they’d like her to be taken into our Dr or a clinic or something just to get her chest listened to. She started feeling crappy on Monday and didn’t go to school the whole week either. She had a low grade fever for most of the week. Just before we were taking her to the clinic, we took her temp and she was at a 38.1 – when she is neutropenic (has really low infection fighting counts) we have to take her into the hospital anytime she scores a temperature of 38 degrees or higher. If she has normal counts then we have to take her in, if she has a fever over 38.5. We chocked it up to the smoking hot bath that I had just pulled her out of and carried on down to the clinic. Her lungs sounded clear, but the clinic dr clocked her temperature in at 38.7…….so Jon called the hospital to let them know they were coming in and they came home to pack up.

We were not sure what to expect. Worse case – she’d be admitted for 3 days. Best case, they’d come home that evening but needing to go back for a 24 dose of antibiotics.

They did get to come home. It was viral, but it rocked us. We have been been so battered and beaten over this past year and half that we have no reserves to stay strong about this. I felt like I was in shock that night. Jeremy was crying off and on because they had to go. The babies were sick. Jon and Geli were gone for who knows how long. I just emotionally and mentally shut down. My mom came over and she helped with the boys and took Xani to youth and picked her up while I tried to clean the house so that we could “carry on” on Saturday. But inside I just felt dead about it all. I have to do this. I can’t just not. I have no time to just be. I have no opportunity to get away from this all. For the past 19 months, we have fought and fought and fought and fought and I don’t know how much fight I have left in me.

A friend stopped by to drop off a few groceries that I needed and we were talking for a moment and I shared with her how I feel like I’m in a bad dream or a horror movie. There is just one bad thing after another after another and I can’t see the end to it all. I know this sounds bad. I know this sounds down. I know this doesn’t sound encouraging and that’s how I feel.

I’m so tired. I’m so worn out. I’m exhausted. I don’t know how I will be able to make it through the next 9 months.

I feel like I’m barely existing. It’s a horrible place to be. There are so many things that are hard right now. I am trying to hold onto faith and hope and yet……..honestly……it’s really tough.

And that’s how I came to yesterday…..I spent most of the day crying. I crawled into bed at 6pm finally fell asleep at 8pm. I woke up at 2am, at 3am, at 4am, at 5am, at 6am and then slept until 8:30am…..sleep evades me this past year and a half…..even if the baby sleeps, I wake. There is so much going on. So many things that have gone wrong. So many things that I’m trying to organize and manage and sty on top of……so many other things that I can’t do anything about……

This is a very tough season…..I can’t wait for this season to pass…….it must!

Another Blow

I’ve had a few days to process and …..we were not prepared for this.

As of October 31st, Jon has been laid off.

The church has not been doing well financially for a while and at this point cannot afford two pastors and so, we are now out of a job.

I felt okay for the first part of this week, and I think that was shock. As the week as progressed, it has slowly begun to sink in…..we have no job! No employment! No Income!

This past year has not been kind to us and we are not in a position financially to absorb any time without a paycheck!

I believe with all my heart that we will make it through this. By that I mean that we will all have each other and that we will love and that we will live and yet……..I have no idea what this means for us practically and realistically.

Will be have to sell our house? Without a job we can’t buy another one, but without a job, we can’t pay for this one either. I know that it sounds rather dramatic, but I’m feeling rather traumatized right now.

I feel like I’m floundering and I don’t know where to go or what to do…..I’m trying to figure out what we can sell and what we can live without and how I can make some money. Even if Jon were to start his business up again, there is no way that he can just instantly make enough to support us…..

I just want to run away.

I know that there is never good timing for this, but this….this is just really, really difficult. Especially after coming on top of this past year.

I’m so tired. I want to sleep and yet, when I lay down….I can’t. Too much to think about and yet I feel so helpless…so hopeless. It’s been a hard day….a tough week…..

She Needs…..

I know that a fever is not that big of a deal….well, most of the time a fever is not that big of a deal. And really, it’s not the fever that’s got me so upset….it’s the timing of it all.

It seems like every time something goes wrong….a few more things all jump on top of us, and we are left under the mountain of crap trying to not be squished. Frankly, I’m tired of it all. I just want to have things go really, REALLY good for a long time. Is that seriously too much to ask?

The fever is not that big of a deal, but it means that I cannot go in to see Jon or Angelica and because I cannot go in to see them, the other kids cannot get in to see them. It’s possible that I could drive us all in and I could hang out in the car for a couple of hours with Judah while they visit, but that really doesn’t sound all that fun, does it? So not looking like it’s going to happen like that.

Jon and Geli are doing well, but they are BORED. She feels fine and yet…they must just hang around.

She seems to be doing amazing. There are a few things that need to happen in order for her to be discharged.

– She needs to have negative blood cultures over 48 hours (that’s up tomorrow at 1pm)
– She needs to be fever free for 48 hours (that’s up in the wee hours of Saturday morning)
– She needs to actually have a neutrophil count (that won’t happen until her WBC is over .5 and today she was at a .3)
– She needs to have one blood test trending downward instead of upward….it was at a 25 today and needs to hit lower numbers.

Basically we are looking at the earliest of Saturday morning before she would be discharged. I’m hoping and praying with everything in me that they do get to come home then.

It was a tough day today and yet I supposed it was a good one, in spite of it all. I have really low expectations on what constitutes a good day, ya’ll! Ummmm there was no puking. Very little fighting. Everyone was sleeping by 8pm….and um…ya….everyone got fed. So ya…..it went okay, I guess!

Well, I’m headed off to bed myself….two night with very little sleep are….well….ya….that…..

Night!

ps. Could ya pray for Judah? He’s still feverish and I’m not sure how the night is going to go and I could really use the sleep and he could really use the health……m’kay??? Thanks so much!

Like a Bad Dream

You will NEVER believe what I am about to tell you.

I can hardly believe it.

I put the kids to bed and was in bed and sleeping just after 10pm. I was so tired because we’d been up most of the night before.

All the kids went to bed happy and healthy. Judah woke up at 1am screaming. This is normal. This is how he wakes up. Frustrating, but oh well…..I went into his room to pick him up and he felt like a hot coal.

Can you believe it? Judah has a fever. I was in shock. How the crap does this happen? Why is this happening? I just don’t understand.

I mean, I understand the how and why of a fever, but I really don’t get the timing.

He clocked in at 37.7F and over the night just continued to rise.

He and I were awake from 1 until after 4 am. Right around 4am, Xani came down to my room to tell me that she’d been awake since 3:30am because she had a nightmare.

It was pretty bad. I prayed with her, talked with her and asked her to try to get back to sleep. She went up stairs and I didn’t hear back from her again.

Judah finally fell asleep on my chest and I just used my pillows to prop myself up so that he would stay there and sleep.

He woke up at 6am and Xani came downstairs just before 7am to let me know that she’d not been able to get back to sleep. She was too scared that she’d go back to sleep and “finish” the dream.

This morning Judah’s temperature hit a 39.7F and I decided that it was time for some Advil. I don’t typically like to medicate my kids but this temp was higher than I’m totally comfortable with.

I’m a little perplexed about what’s going on. He isn’t throwing up and he doesn’t have a cough. There is no runny nose! He’s peeing and not crying hysterically. He’s nursing. He’s even eaten a tiny bit of breakfast. He does have the feverish, hot looking eyes and it definitely not his usual chipper self.

He just scored a 37.5F after a dose of Advil…..so its responding to the meds which is a good thing.

I’m tired and upset and really, REALLY frustrated about this. This is absolutely ridiculous. We had planned to go in and see Geli and Jon as a family today. The kids were pretty excited to be going in to see them as they were pretty upset that they had to go into the hospital in the first place. To wake up and hear the news that we were not going in….well, there were a few tears.

I know we will make it through this but it’s still tough. Mostly, I’m angry. Angry that this is happening. It’s crap!

Geli and Jon had a good night last night. She felt pretty good after getting the blood transfusion and didn’t get to sleep as early as I would have liked her to but I’m just happy she was feeling a bit better.

Her counts are all up this morning…

for those who care:

White Blood Count is .3
Hemoglobin is 94
Platelets are 66

So everything is up, even if artificially, which is good. Her temps which were up last night have been hanging around 37.1F which is normal. So we are just waiting to for her counts to come up and for her cultures to come back negative.

I’m hoping that Judah will actually sleep today and then I will hopefully lay down for a nap as well.

I’ll update as soon as I hear any news.

Winding Down for the Evening

Jon and Geli are settled in their room and getting ready to wind down for the evening. There was talk of a movie and possibly some snacks and a midnight run of antibiotics.

She’s feeling and acting a lot better after receiving two bags of red blood cells. She’s not feeling 100% but definitely better than earlier today. We are going to head in to the hospital tomorrow and hang with them a bit. Probably have lunch with them……or maybe dinner….or both? Who knows?

We just spoke with Jon and Geli on Skype and now I’ve kicked Xandra and Jeremy up to bed. I’ve got to go and “encourage them” to actually shut the lights out and go to sleep and then I’m headed to bed myself. It was a LOOOOOOONG night last night and solo parenting is not easy and I’m not sure how long I’ll be at it. So I gotta sleep when I can….and unfortunately, I don’t do daytime naps as easy as I’d like.

Fortunately, my parents are AMAZING, and they’ve kept Siah overnight. They had him last night (which was a blessing) and they are keeping him again tonight. He still wakes up in the middle of the night and climbs into our bed. It’s not that big of a deal, but typically him and Judah tag team each other and only one of them is up at a time……..which means that if they are both here…..I don’t get hardly any sleep. The worst thing….when he sleeps at my mom’s house….Siah stays in his own bed. What is up with that? Oh well, I just keep telling myself that this is not a forever thing. One day I’ll wish for cuddles….I will try to enjoy and appreciate every one I can get right now.

Thanks for all your prayer and support. We really appreciate it.

Excuse the stupid sound that I make with my mouth. Judah was doing that and I was trying to capture it on video cause he was doing it ALL DAY! But when I turned my iPhone on so that he could see himself in the camera he got so excited and stopped doing it. But his little happiness and laughter is so contagious…….It’s too good to keep to myself. Sometimes I wish I could bottle it up and give it away. The world would be a better place……

May your evening be peaceful and full of rest.

Magic Numbers

We got the results back from a few of Geli’s blood tests.

Her White Blood Count was at a .2
Her Hemoglobin was at a 77
Her Platelets were are a 35

This means that everything is down a bit from yesterday. This is not good news. Geli will get platelets and red blood.

Her temperature continued to hover around 37.8F and they started the platelets and while the platelets were running, her temperature spiked up to a 38.3F and then in another half an hour it made it all the way up to 38.6F. They have given her some Tylenol to bring the fever down and to make her feel a bit more comfortable.

Not Feeling Great

chillin’ in the clinic

The platelets have finished running and they have started her on a dose of antibiotics.

After the antibiotics is finished running then she will get some red blood.

They are scheduled to be in a room up on 3B on the Oncology Ward and we are happy about that. It really sucks to be on a ward where you don’t know anyone and where they don’t know the typical protocol for oncology kids. I mean, it sucks to be in the hospital at all but at least having the staff that you know and being in familiar surroundings is a definite bonus.

There is another test that they did on her blood that can indicate whether an infection might be brewing and it didn’t seem to indicate that she had a raging infection. It’s well within the “normal range” for that test but until the blood is cultured, we won’t know for sure if anything is growing (bacteria) or if this is a neutropenic fever or if it’s a virus.

And so we wait some more.

I HATE waiting.

I know that this phase is almost over and that her counts are not expected to be this low again, but it sucks. It sucks that Angelica is not feeling 100%. It sucks that we are split up, as a family. There is just a lot to this situation that sucks.

I had a bit of a moment this morning, where I just wanted to throw a temperature tantrum. I wanted to scream and kick my feet and fall of the floor and yell, “This isn’t fair! Why did my daughter have to get cancer? Why did she get sick and not someone else? Why is our family going through this?”

I wouldn’t wish this on anyone else.

I know that life is not fair. I don’t even expect it to be. I just hate that this is happening to us.

Down This Road

We talked with our nurse at the clinic around 10am and after talking through what Geli looks like, is feeling like and acting like – the decision was made to go into the clinic, run a CBC (Complete Blood Count) and a few other blood tests.

Based on the results of those tests we should know a bit more about what we are dealing with.

It could be that the elevated temperature, dizziness, the pressure in her chest, the tiredness…..they could all be symptoms of low red blood or……they could also be an infection.

Jon and Geli are at the hospital right now and she’s had her blood drawn so at this point we are just waiting for the results of her blood draws to come back.

I HATE waiting. Unless her red blood cells are amazing, she’ll probably get red blood today which combined with her almost non-existent White Blood Count could mean a fever and admission.

I’m trying to resign myself that they are there for sure until the weekend. And that sucks!

Overnight Update

We took Angelica’s temp every two hours last night and it hovered between 37.4F and 37.8F.

It’s up but it hasn’t crossed the 38F critical marker. At about 4am, we called into the hospital because we really don’t want to play around with this. We’d rather error on the side of caution and take her in early and catch an infection in the early stage as opposed to waiting it out and having it be a full blown problem.

She’s tired from having an interrupted sleep, and so she’s upstairs sleeping right now.

We will take her next temperature reading around 9:30-10am and will call into the clinic then to talk to our nurse.

Until then, we wait and pray.