Life – Page 14 – xangelle.com

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.

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!

Happy Anniversary… sort of…

On June 16th, 2010, we received a call from our family Doctor that started the most difficult year our family has ever had to deal with. We spent that night in the Emergency Room at BC Children’s Hospital getting asked a million question and getting poked and prodded and at about 1:00am on June 17th an Oncology Resident came into our room and stated that initial blood screen results indicated that Angelica was fighting Leukemia. We were admitted to the hospital, tried to get a few hours of sleep and…

On June 17th, 2010, after a bone marrow biopsy, the diagnosis was confirmed as Acute Lymphoblastic Leukemia – B Cell (with a few other specific gene type annotations). This became Day 0 and a whirlwind of activity began that changed the course of our lives.

June 17, 2010

Tomorrow is June 17th, 2011. One year since all this began and Angelica is still in active treatment. Her counts are very low, so we have an appointment tomorrow to get some blood transfusions. It will take all day in at BC Children’s, and we would like to celebrate.

We are not looking to celebrate a year of leukemia treatment… that is just morbid. We do want to celebrate a year of life, a year of triumph and a year of community coming together. As her counts are so low, and she is not really allowed to be around groups of people, we can’t go and throw a big BBQ in the back yard, but we can celebrate in other ways. I would like to ask you to send in a comment at the bottom of this post or e-mail (to: patti@xangelle.com) and share “something” with Angelica. You may have a moment in this journey that really sticks out to you. You may have a way that this journey has impacted your life. You may just be able to say, “I am still standing with you”. But please take a moment to share something. I would like to be able to share your encouraging thoughts and comments with her all during the day tomorrow at the hospital.

Also, please have a look at the shirts that Angelica is selling (button on the right) and buy one or pass the link along to friends and family. And if you are not interested in using the paypal shopping cart, or wish to pay in cash, please just contact us and we will set it up. We will be placing our first order with the shirt printer on Monday.

Jon

This and That

Angelica went in for her last dose of chemo for this week. She has another 4 doses next week and then two more doses after that and she’ll be done. She was feeling pretty tired yesterday and the day before and so we asked if she could come in early today and get her counts. Her Hemoglobin was at a 95 on Monday and while it wasn’t likely that it had bottomed out, we just wanted to check it out.

When they did the blood work today there was good news, and bad (sort of)….the bad news was that her platelets had dropped from 220 to 146. Still in a decent range, but definitely dropping. Her White Blood count and her neutrophils are both UP, which is awesome as those are the infection fighters. They will be on their way down. The high point of these drugs should start to kick in the middle to end of next week (the nadir is 7-10 days). And her hemoglobin was at 95 which is lower for normal people and even low for her, but that’s exactly what it was on Monday so no need for a transfusion although we are likely looking at either platelets or blood or both in the near future.

(Speaking of blood, I’m scheduled to donate blood on Saturday June 18th…..have you given (if you’re able)? Would you consider it? It could be your gift!)

Other than that, today was a good day for her and that’s amazing. I’m still praying and hoping that we make it through the end of this round with no infections and no hospital stays. Actually, starting right now, I’m going to speak it out…..THERE WILL BE NO INFECTIONS, NO HOSPITAL STAYS…just protection and health!

******

Judah is growing so fast. He took about 4 steps on Thursday??? I think, maybe it was Wednesday. I don’t remember and then later that day he’s been taking steps and steps and more steps. He is much faster and confident crawling and so as soon as he feels unsure he drops down and crawls, but we will have a walker on our hands and most likely before his first birthday.

He is also communicating with us a ton. Here he is letting us know that he’s done. He’s done eating. He’s done sitting in his chair or he’s done playing on the floor. Anything that he’s had enough of or wants a change, he’ll typically put his hands up with his palms facing up and say “done!”

He gets a little upset with me about half way through, I think because I’m no actually doing what he wants. This child, he knows how to let you know that he’s not happy with you. No worries about him getting lost in the masses. He is very vocal.

*******

I cannot wait for school to be over. I know that as soon as it’s over I’ll be wishing it was back in, but right now, I’m really ready for the summer to start so that things can just slow down around here. No early mornings. No morning meltdowns. No rushing. No lunches to be made…..the list goes on and on and on. I’m just ready for summer. I’m also ready for some summer days. It’s been so miserable, eh? BRUTAL!!!!! What’s the weather like where you’re at, if you’re not from the rainy, grey Lower Mainland!

*******

How do YOU deal with frustrations in your life? Any tips, ideas, thoughts to share, comments to ponder? I’d love to hear from you!

Hope you enjoy your weekend! We have no real plans. It’s a take it easy kind of weekend. I like those.

frustration rises…..

I’ve had a bit of a tough day today. It’s been coming on for a few days now and I think it’s actually hit me.

I’m frustrated and what’s worse….I’m frustrated that I’m frustrated. How’s that for ridiculous?

He’s too cool for this wig!

My mom and dad took Siah camping for the week and in some ways this week has felt like a vacation. In other ways, I feel like it’s just highlighted how little I’m able to accomplish.

I could tell you all the things I’ve done and you’d probably tell me that I’ve done a ton of stuff, but this is not about the things that I’ve done as much as it is about the things I’ve not done. The things I want to do that get pushed aside as the things I have to do or need to go keeps cycling round and round and round. It’s frustrating!!!

I can say all the right things to myself about how I need to focus on what I’ve done. I can tell myself that it’s just a season. I can tell myself that my babies won’t be babies forever. I can tell myself to stay present and enjoy “this” moment……

Right now, I’m just feeling down. I’m feeling frustrated. I’m feeling UPSET!

It’s okay. I’ll be okay. I’ll make it through, but today……..today was a tough day.

Tomorrow will be better, right?

Delayed Intensification Stage 2

Angelica started the final Intensive stage of Chemotherapy last Friday April 29.

Her and Jon headed into BC Children’s Hospital for her 10am appointment and aside from being grouchy because she couldn’t eat – it was a fairly uneventful morning.

She wasn’t allowed to eat because she had a procedure where she is lightly sedated and they don’t want her to possibly vomit and then choke on it…and so, no eating or drinking 6 hours before the procedures. Typically she has these procedures, first thing in the morning, but for whatever reason, this one was a bit later.

So last Friday she received Chemo into her spinal fluid (via a lumbar puncture), and two types of Chemo intravenously into her port. One of them she seems to tolerate with no problem and the other she tolerates ok, but not as well. She is also back on a steroid for a one week on, one week off and then repeated….

The steroid can cause a host of issues – like a diabetic state, increased appetite, flushed cheeks, increased mood swings, insomnia and the worst one for Geli is that (last time) in the first week off, she felt some pain in her joints and then in the second week off she was in a LOT of pain for about 4 days. Even morphine and codeine didn’t take away the pain it only just barely relieved it. Some kids are hospitalized because the joint pain can be so bad…..we are definitely praying that is not the case this time around and that she is able to tolerate everything this round.

Angelica basically spent the weekend on the couch. She felt pretty rough on Saturday and Sunday and by Monday she hadn’t really slept all weekend and was crying. Instead of sending her off to school, I sent her back up to bed with a gravol to try to get her some sleep. She rested a little but didn’t get enough sleep. Stupid steroid!

Then on Wednesday she received the chemo shots into her thigh muscles and that appointment is a looooooong boring, 4 hour appointment. It takes about an hour to get signed in and to process the request for the chemo to be delivered to the clinic. They won’t process the order for the chemo (through the pharmacy) until the patient is physically signed in, and then after the injections, she’s got to hang around the clinic for an additional 3 hours just in case she has a anaphylactic reaction to the drug. Apparently its a possibility with this drug and the more times that you receive the drug, the greater the likelihood that you might possibly have a reaction.

So she goes in and hangs out and watches movies for 4 hours. Fun, fun!

She felt pretty good today and she only has 2 more doses of the steroid and then her week off starts.

The way this stage works out is that there are two parts…..The first 4 weeks and then the second 4 weeks…

The first 4 weeks looks like this….

Day 1 – Chemo via LP and IV
Day 4, or 5 or 6 – Chemo into her thighs
Day 8 – Chemo via IV
Day 15 – Chemo via IV
Day 22 nothing

first half is over…..

Day 29 – Chemo via IV
Day 30 – Chemo via IV
Day 31 – Chemo via IV
Day 32 – Chemo via IV

Day 36 – Chemo via IV
Day 37 – Chemo via IV
Day 38 – Chemo via IV
Day 39 – Chemo via IV

Day 43 – Chemo via IV and Intramuscular

Day 50 – Chemo via IV

and then we wait until Day 57 or until her counts come up enough to start Maintenance…..

There are the steroids and the oral chemo that I’ve not mentioned and well, really it all “seems” like a lot and that’s because it is a lot to deal with and keep straight, BUT……..we’ve done this round before and we are trying to stay focused on the fact that every day we finish, brings us one day closer to the end of this intensive year of chemotherapy.

Today is day 7…we have one week under our belts with only 7 weeks of treatment to go……

Angelica had a decent day today. She stayed at home because she needed to get a bunch of work done for her Homestay Teacher. The biggest challenge today is managing her blood sugar levels by food which is complicated by the fact that all she wants to eat are carbs and high sugar foods, add in the steroid which makes her feel hungry ALL THE TIME and coming up with creative ideas for what to eat is pretty much a full time job right now.

She has her next trip into BC Children’s tomorrow morning.

We are asking for you to pray as Geli goes through this last round before maintenance. She needs to be able to stay positive mentally and emotionally as we make our way over the next 2 months. She is tired. This has been a very long 10 months and just before she started this round she was feeling pretty good. She was feeling very normal, probably the most normal that she has since this journey started and to all of the sudden feel pretty crappy again….it’s a hard blow to take.

And also that she wouldn’t feel so wiped this weekend. It would be nice for her to be able to enjoy the weekends with our family.

Thank you for all your support and prayers. We would not be where we are at now without all of your love and support and encouragement and prayers.

We are SO THANKFUL!

And the Waves Roll In….

I think I’m going through another low moment in this whole thing.

I’m hoping that it was just the crap food that I ate at Easter that is the reason why I’m so stinking tired, but regardless….I’m finding it a struggle to get motivated and get everything done. I kind of have that feeling that I’m stuck with my feet in cement and that I’ve got cement running through my veins….everything feels like it’s SO. MUCH. EFFORT! Last night I crawled into bed with Judah at 7pm and “cuddled” him to sleep and promptly drifted off myself.

Breakfast Time

I’ve found that much like the waves of grief, that come and go sometimes stronger and sometimes more gentle…..that the exhaustion of this whole time in our lives seems to come in waves as well.

I feel completely overwhelmed and then I find that things seem a bit easier….then I feel overwhelmed and tired again and then I find that I feel stronger than before. It keeps on cycling and the most exciting part of the whole cycle is that I’ve recognized that it comes and it goes, and more often than not I end up feeling stronger after the “down cycle” than before.

My Breakfast Partner

I’m not “fighting” the down times as much and I’m finding that helps some….

It doesn’t really make me feel any better, but I don’t feel so blindsided by it all. And yet, the down times frustrate me….

Good Morning

I’m tired. I feel overwhelmed by all I must accomplish. I feel a bit stressed about this next round of chemo that Geli is supposed to be starting tomorrow, and pray that it goes smoothly. I wish I had more time….in a day, to myself……just more time….and energy! Lots more energy would be nice, too!

Part 2 – The Place I’m In

I mentioned in Part 1 that I spend a great deal of time inside my house. The biggest reason for this is to keep Angelica as safe as possible.

We cannot protect her from everything and even in this environment, no matter how hard we try, there are bugs and bacteria that we cannot eliminate. When her counts get low…..she is even a danger to herself…..any cut or bump can add to the possibility for a problem….

It’s not fun.

The weight of the stress alone, is almost too much to carry; let alone just dealing with the actual chemo and the side effects it brings and add in the emotional side of things and often it can seem overwhelming, but that’s not the point of this post….

Friday April 8 Langley, BC

Have you ever been hurt by another person?

I have.

For different reasons and at different times in my life, my feelings got hurt and it sucked. No one likes to get hurt, do they?

Well, here is some news that I’m sure is news to no one……..PAIN and SUFFERING happen. It’s as much a part of life as breathing and dying. It happens. It’s gonna happen! It’s just a part of life. No one gets a free pass. I’ve found that when I can accept that life has good AND bad moments, I can be more at peace with myself and in turn, when I am more at peace with myself – then I have more grace for others….

In this place that I’m in………I’m uncomfortable!

I’m literally living inside walls and there are aspects of this that feel so, so, SO claustrophobic!

You see, in response to the hurt I experienced, I built walls; and these walls……..they were supposed to keep me safe and protected.

I’m not really sure what I was thinking other than I just didn’t want to get hurt again. I guess that I figured that if my walls were big enough then I could keep hurtful people from doing hurtful things to me, and then… my life would be all sunshine and roses.

People who are hurting…..they end up hurting other people and the cycle rolls around and around and around! Think about it….when are you most likely to lash out at someone….after you’ve been hurt or offended?

HA!

It doesn’t really work like that. I still got hurt!

Eventually it got to the point where I avoided people. I don’t mean that I physically avoided ALL people, but that I didn’t really allow anyone to be close to me. I never allowed myself to be vulnerable to anyone. My understanding was that if I opened myself up to people, then I was opening myself up to a world of hurt.

And in time, I found myself alone!

The walls I had built to protect myself by keeping others out created an even bigger problem…..they allowed no one in.

I was alone; oh so very, VERY alone!

Eventually, I realized that this was a horrible way to live and after a fair amount of counseling, I began to let the walls down. I’m not saying that everything was 100% better and that I had no walls and was completely open and vulnerable to everyone, but I believe I was heading in the right direction. I was in process….. I was allowing people in to see me…to see the real me; to get to know me, the real me. Yes, I recognized that I might get hurt, but honestly, being alone hurts worse.

People are lonely because they build walls instead of bridges. Joseph F. Newton

This last year, I’ve experienced those walls in a very literal way. I’m inside these walls. We are trying to create a safe place for our daughter; and for a variety of reasons, I’ve spent most of the past year within some literal walls. It’s been a rough year. It’s been a stressful year. It’s been a very tiring year, but most of all it’s been a very lonely year!

It’s also in some ways been a very enlightening year. I have SO MUCH TIME TO THINK!

Me as a Baby

Sometimes, this is a bad thing and sometimes, it is a very good thing.

I don’t want to be separated from “life”. Yes, this is just one year. Yes, we have made choices for a reason, a good reason. Yes, it’s not forever but right now it’s a lonely time and it sucks. I understand all of the reasons and it still doesn’t make it any better or easier. And so, I’m looking forward to this “season” ending and a new season beginning.

In any case, this has really cemented in me the fact that I do not want to be alone…..I do not want to live confined within walls. I’d rather be vulnerable than alone!

(part 3 coming soon)

Behind the Scenes….

This is what has been happening at our house, last night and this morning…

We had a great family get together yesterday afternoon and then Xani started barfing. Between last night and this morning she barfed 7 times….and we won’t event talk about what else was going on “behind the scenes” if you know what I mean….This morning she woke up with a fever…..this is so frustrating.

We moved Xani’s mattress into the TV room mostly to keep her and Geli separated. We are desperately hoping and praying that this “whatever it is” will skip Geli.

Over the weekend, Geli had a reaction to a bandaid and we think it’s a combination of the adhesive and the one chemo drug that she’s getting. Something similar happened once before. She has a bunch of blisters on her arm around where they drew blood on Wednesday and it hurts really bad. We have been applying Polysporin and praying that it just goes away and doesn’t cause any big problems. Her counts are high enough that we are hoping that she will be able to fight it off herself.

She did throw up her breakfast this morning though which scored her the right to stay at home today. And seeing as she is fine other than that barf…..I’m saying that it’s chemo related and not sickness related….at least it seems that way.

Jeremy also woke up this morning with his own “behind the scenes” action and he’s been alternately laying on the couch and laying in the bath this morning…..really not feeling very well at all. He keeps threatening to barf and we have a bowl close by, just in case.

There is a lot of soup and weak peppermint tea being handed out and we are praying that whatever this is….that it just stops now.

I was SO looking forward to everyone going back to school and Jon and I being able to relax on his one day off and nope…….so I’m pouting and whining a bit. I’ll be ok, but I’ve had enough of vomiting and diarrhea to last me a life time….

While I’m cleaning up vomit and other behind the scene messes…..do you have any humorous life stories to share with me? I’d love to hear from you….and I could really use the laugh today!