Category: Cancer Sucks

On a Scale From 1 to 10….

It’s been rough around here this weekend.

Angelica finished her last dose of the steroid that she was on on Thursday night. She woke up Friday morning a bit achy and I kept praying and hoping that she would somehow miraculously escape the brutal joint pain that she experienced that last time that we went through this round.

It’s been a rough couple of weeks and we are just trying to keep focused on the fact that end is so close. She has one more “set” of chemo to go through and then she is on Maintenance.

Maintenance is the long term chemotherapy designed to destroy any lingering cancer cells that may possibly be hiding in the body so that it completely eradicates any presence of the disease in the body. It is less intense that the previous chemotherapy and usually lasts about 2 to 3 years.

The steroid is a pretty brutal drug. It has it’s benefits, but some of the side effects are pretty tough to deal with. The few side effects that Geli struggles with the most are:

– a diabetic state
– insomnia
– wicked joint pain

These past 3 weeks have been tough because we’ve been attempting to control her blood sugars by food and exercise and she’s done really well. The biggest problem is that it’s something that requires actual effort and a discipline on her part to not just eat whatever she wants. The hassle of having to deal with it wears on her after a while. Especially because the steroid causes an increase in her appetite and what she wants to eat are carbs, but they are also what cause her blood sugar to rise. Typically after 2-3 days of being on the steroid, her body seems to recognize that it needs to produce extra insulin and she can relax a bit on being so tight on carb control. This last dose was a bit tougher than that…..I think her body is tired. I think that emotionally, she’s tired and that mentally, she’s exhausted. It took until the last day on the steroid for her body to catch up and stabilize…..not cool or fun!

I know that Jon and I are noticing that as we get closer and closer to the end of this intensive stage that we are getting more and more tired. We know the end is coming and it’s like the past year is gaining on us and we are feeling like we are being swept under. We’ve fought the exhaustion for so long and we just need to stay strong for a little bit, but it’s harder and harder to keep on.

If we’re feeling like this, I cannot even fathom what she’s feeling like.

Anyway, she’s slept so poorly over the past 3 weeks and has pretty much slept about 10 hours in the past 3 days. Even with medicine….and the lack of sleep is just compounding everything. She has said that the pain is at a 4 out of 10 and it’s mostly just in her knees although her shoulders and wrists and lower back hurt. Last time around, she indicated that the pain reached a 6 or 7 out of 10 and she had more joints that ached. So, if the pain is less intense and fewer joints are involved then she is just worn down and less able to “handle” it all. And that sucks!

We’ve gone the medication route to just try to wait the time out.

And even that only helps to take the edge off, it doesn’t remove the pain completely.

She did sleep from midnight to 4:30 last night but then has been up since then. Sometimes walking and moving the joints can help and this morning from 4:30am until 8:30am, she paced the floor while watching two movies. And at that point, she was just exhausted and asked for more meds and went up to take a bath until they kicked in and right now she’s sleeping.

We looked at her journal from last time around and if this time follows the same timeline as last time, then yesterday and last night should have been her worst times…..today should be less intense with tonight being better than last and then every day should get better from here on out.

The second half of this round is supposed to start on Monday or Tuesday May 30 or 31. We are just going to be upfront and beg for your prayers over the second half of this stage. At the end of this stage that we are coming up on, Geli has ended up in the hospital every time. It’s a pretty intensive chemo treatment and knocks her counts down to nothing, which puts her at risk of infection. It would be amazing if she managed to stay out of the hospital this time around. That is what we want. We want for Geli to make it through this next round of chemo and to not pick up any bacteria at all.

She has an amazing summer planned and we are wanting to just move forward smoothly onto the next stage of our lives.

I want to thank you for all that you’ve done. I know that I’ve not posted as often and really, things have been a bit crazy around here. There is so much more going on that I’ve not had time or energy to share. Just know that in all my busy, crazy, down, frustrated times…..the things you’ve done, the words you’ve sent, the prayers you’ve offered….they come back to my mind and give me strength and encouragement and make me smile.

Thank you for walking this journey with us. You have NO IDEA how much we’ve needed you and are thankful for you and appreciate you!

Keeping On

I dropped Geli off at school this morning just before 9:30am and I just picked her up…..just after 10:30am. 1 hour…yee haw!

She called and said that she had a headache and was seeing spots and that the room was shifting and spinning….sounds like fun. Migraine, anyone?

Headache

This is her week “on” the steroid and she’s definitely “off”.

Her blood sugar levels have been a bit harder to control this week as opposed to two weeks ago and while she is doing a good job…..it’s been a lot of work and is not fun at all.

You know what it’s like when you cant have something and it’s all you can focus on…..yah, her and her carbs…..they are quite the pair this week. It’s like when you are dieting and all you can think about are the high calorie, high sugar crap; and salads and fruits and lean cuts of meat just don’t quite cut it….yah! It sucks!

She was awake this morning at 6am and couldn’t get back to sleep. Apparently she came down to our room and got Judah when he woke up at 6:30am. I say apparently, because I didn’t hear him wake up or her come to get him. Nice! Jon knew though….so there’s that. She brought him back down at 7am and so we got to sleep in for an extra half an hour this morning. How nice is that?

After the kids went to school, Geli lay down on the couch and drifted off to sleep. She didn’t have a class for first block this morning and so I just let her sleep. I woke her up just before 9:30am because that’s when her next class was.

It’s so hard to know what to do. Do I just let her sleep or do I wake her up and make her go to class. On one hand it’s good for her to sleep and rest and heal, on the other hand, I want to try to keep to a “typical” schedule as much as possible.

We keep encouraging her (and all the other kids) to plan to do things as normal as possible. Plan to get up in the morning. Plan to get ready for the day. Plan to go to school. Plan to stay awake in the daytime and to sleep in the night time. Plan to be independent and responsible for yourself. Plan to be happy and healthy.

I want her to be able to be as normal or typical, as possible. Then, when there are the times when she just can’t do things for herself or if she need to sleep or stay home from school – then it’s okay! I want her to try her hardest to LIVE! And then to ask for help when she needs it. I don’t want her to learn to be dependent on us for everything.

It’s so easy when your child is sick for a long period of time to start to cater to them. It’s easy to get in the mind set that they are just a “poor baby” who is so hard done by. It’s easy to treat them as if they deserve to have everything done for them in an effort to “make up” for all the hard, tough things that they are dealing with.

It’s a fine line to walk between caring for, pandering to and continuing to train your child.

We’ve been at this for almost a year and while I realize that one year out of a life time is not that long of a time….there are things that are important to me. Continuing to train Angelica (and our other children) in appropriate ways for the circumstances is really important to me. Life is full of ups and downs and learning to carry on in the middle of it is so important.

We encourage Geli that if she can do something for herself – that she should. Get up and get yourself a glass of water if you want one. Get up and that book that you wanted or a snack for yourself. If you can’t get up and get yourself one, then by all means ask…or explain that you probably could, but that it would require more effort than you feel that you currently have to give, and ask for help. This also allows us to gauge where she’s at physically, mentally and emotionally. She may just feel too exhausted to try and that’s okay. That’s a part of this whole process. There are good days, excellent days, tough days and really REALLY tough days.

But, that is also life!

In life, there are good days and excellent days and hard days and really, REALLY bad days. I think it’s important to live and enjoy your good days and to plow through some of the tough days and to learn to admit when you need the help and….. to ask for the help.

We are here to help Geli. We are here to encourage her. We are her family and we love her. We can see when she’s actively choosing to participate in life and to be responsible for herself and even giving out of herself. On the flip side, when she is struggling, we are right there to help and encourage and love and to give back into her.

These are some of the life lessons that I feel are so important. I feel that it’s important to not see her as a “poor baby”. I feel its especially important for her to not see herself as a “poor baby”. I feel that it’s important to recognize that she has had (and is having) a tough year. I feel that it’s important to validate when she is struggling. I feel that it’s important to encourage her to keep on, keeping on. I feel it’s important to teach her that this is her life. She can recognize that this is a part of her journey (just a small part…) and accept it for what it is OR….she can feel that she’s been given an unfair lot in life and be consumed with how much better everyone else’s life seems or appears. If she can learn to accept that this is her journey, she will be able to find happiness within herself as she carries on. If she focuses on how bad she has it and how good others have it, she will be oh, SO miserable.

For the most part, she “gets” this. She is an amazing young lady and I’m so proud of her. This is not an easy portion of her life’s journey, but she is walking this road with courage and grace. I’m thrilled to be able to walk along side her, encouraging her, cheering her on……loving her!

ps. Geli has no more chemo until Monday May 30th…..this is wonderful and yet at the same time, the 3 doses of chemo that she has just had will be hitting their high points of effectiveness within the next week and a bit.

Here are some prayer requests for the next week or so:

– No joint pain when she goes off the steroid this time

– No infections of any kind

– No Headaches (she’s currently dealing with this and it sucks)

– For Health…that Geli would really be able to enjoy the next 2 weeks.

– For Rest for all of us…..

Thank you so much! We have been so encouraged by your love and prayers and are grateful for YOU!

Verbal Diarrhea

I’m not sure what the deal is, but today…….I’M TIRED!

I would give just about anything to be able to crawl back in bed right now, but that’s not an option and so instead of feeling sorry for myself – I’ve got to somehow give myself a shake and carry on with my day.

There is so much that I really should be doing and none of it that I really want to do….how’s that for incentive for ya?

IMG_1484

Jon and Judah up at Harrison Hot Springs! Love his hair!

Geli had her second dose of Chemo for this round this past Friday and she seemed to handle it a bit better than the week before. It could have something to do with how we’ve managed the meds/nausea, but she felt less sick that the previous week. This is the first “off of the steroid” week and while she didn’t feel as nauseated, she was in quite a bit of pain.

I mentioned before that when she is coming off of the steroid, that her joints can end up hurting quite badly. She didn’t feel bad enough to want to take the codeine or morphine but the constant pain is wearing…..She felt that the pain level reached a 4 out of ten, on the pain scale level. Which I think is enough to have taken something, but she didn’t want to, and so she didn’t.

Fortunately, the pain from her joints has mostly subsided and aside from the random wave of nausea and the odd headache, she is doing quite well. She was at school part of yesterday and has gone again today. Our Doctor figured that she may be able to attend quite a bit of this month, which is a nice bonus as we figured that her counts would be quite low for most of this round….but hey, we’ll take the higher counts as it means more protection from her immune system – YAH for that!

I’m extremely frustrated with Judah….he is the WORST day time napper that I’ve ever had. He might go down for al of 10 minutes and then he’ll wake up crying and screaming. I know that he’s not ready to wake up and yet…..he doesn’t want to settle again and ARGH…..A cranky, crying, overtired baby is not fun!

Neither is a cranky, crying, overtired mom…..

We have a meeting tomorrow at Jeremy’s school to talk about him, and really – there is a lot to that part of the story and I don’t have the time or the energy to get into it….and so, I’ll just say that we are still moving forward with Jeremy and that it’s a tough journey at times, but man, if he isn’t just a lovely little boy with such a gentle spirit. I sure love him!

For the most part, Xandra is doing AMAZINGLY WELL. We took her to the pediatrician about a month ago, I think? and he is treating her for ADD/ADHD and the difference in her is UNBELIEVABLE! She is looking and acting and producing work a lot more like the Xandra from years gone by…….It’s frustrating that this all came about at the same time as Geli’s diagnosis and treatment and I wish that we’d been more on top of things because I believe she went too far down a road that she never needed to go on. We could have caught things sooner. I’m not sure if I mentioned this before, but ADDD presents itself differently in girls than in boys. Typically, girls are diagnosed around 12 years of age when organization is a bit more complicated (as in when Grade 7 teachers start to train the kids to be able to handle the High School organization structure). For us, we were not sure if Xani was just stressed about the Cancer stuff or the family stuff or school stuff or how much of all of the different things played into her stress levels, but to give her some medicine so that at the very least, she can organize and structure her life better……it has made a HUGE difference. Xandra is a very bright little girl and has always done extremely well in school. This year, she has not shown even a part of how capable and intelligent she is and we just wrote it off to the chaos and stress (which I’m sure are contributors) but in the past couple of weeks since putting her on the meds…..her marks have come up drastically and she is better able to plan out her work load….it’s made a drastic difference in both her schoolwork AND in her stress levels. And we are SO thrilled that she is doing better.

The Teen Oncology Group is having another function tomorrow night and they are probably going to Theater Sports. So, Jon and I (and Judah) are headed into town for Wednesday evening. I’m not sure what Jon and I are going to do……any suggestions? We are looking at being there probably around 5pm and having to pick Angelica up around 8:00pm.

If you are local or know Vancouver, what is your favorite thing to do?

For the Fun of it

Jon just posted a status on Facebook that said something about Geli heading into the hospital for her second dose of chemo and the other kids having today off school (it’s a Professional Day) and then he said something about us all going into town together “for the fun of it”.

Which, if you’ve ever taken 5 kids ranging from 14 to >1 anywhere, you know that the “fun” that is spoken of is less “fun” and more “stressful” than anything.

I guess if you are going anywhere, Children’s Hospital is a good place to go, in case anything goes wrong or…you know, for kids to be able to just be kids?

Not that I’m expecting anything to go wrong, but wrangling children is almost as fun as I’ve heard wrangling sheep is, and if it weren’t for the fact that we need to get passports in order to be able to even apply for Geli’s Wish, then we’d be staying home today.

In the Wish package, we were given a coupon for Blacks to get Passport photo’s taken and the closest (or most convenient to us) Blacks Photography is……..in Metrotown. Sweet!

So, we wake up this morning and prepare for chemo and pictures….how fun!

We’ll be hitting the hospital first and hopefully we’ll be in and out of there within an hour. We do have to wait for Geli to get a blood count so that we know if she needs a transfusion or not, but I’m not guessing that it’s necessary. It usually isn’t after only the first week of chemo….but as every week goes by, the likelihood of her counts going too low increases…..the actual chemo doses should only take less then 10 minutes…it’s the waiting…..oh the joys of waiting…….

And so today…..we head in and I’m really hoping that it’s more fun than it should be!

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!

When you wish upon a star….

Guess what came in the mail on Monday?

Can you guess?

It’s probably pretty difficult without any clues, isn’t it?

Well, here is a hint….actually it’s not a hint…it’s just what came in the mail on Monday!

Children's Wish Application

Children who have a life threatening illness are granted a wish.

Angelica, unfortunately, is eligible to receive a wish. I wish for all the wishes in the world that she were not eligible (as in, she was not dealing with cancer and the resulting chemotherapy) and yet she is. And so she gets to wish….

She has been referred to the Children’s Wish Foundation and on Monday the application came in the mail.

The different Wish Foundations are amazing.

If you have an opportunity to give to a Children’s Wish Foundation, please do……think about us. Think about all that we’ve gone through on this crazy journey and all that we have yet to go through. It’s personal. There are so many kids going through life threatening situations and to have a “wish” to give you hope, to brighten your day, to encourage you to keep going when things are tough, to put a smile on your face when you least feel like smiling…..it’s a powerful thing.

I never look at opportunities to give to BC Children’s Hospital or the Miracle Network, or Balding for Dollars or any of the Wish Foundations, the same way that I used to. It’s real! It’s personal.

They have given so much to us, to our family…….to Angelica!

If you have the opportunity, please give. There is a Balding for Dollars Event coming up at BC CHildren’s Hospital on May 7th, and if you are interested, you can go to their website and give….

This is not just some nebulous foundation that does some random nice things one in a while. We have personally benefited from the Balding for Dollars Foundation and want to be able to see them, help others.

Angelica contributed to the Kourageous Kids Calendar and although it’s already partially through the year, you can still purchase a calendar and have a piece of Geli’s Artwork.

We imagine all the people who have given to allow Geli to have a wish and we are so thankful for each and everyone…….

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.

Breakfast Partner

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

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….

Weird Sun Thingy

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!

Baby Patti

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)

Part 1 – The Place I’m In

I have written, discarded and re-written about 6 different posts and I have no idea how to write about what I’m thinking about or where to even start.

Okay, lets try this out…

The chemotherapy that Angelica is going through kills cells. It specifically kills cancer cells, but indiscriminately, it kills a lot of other cells.

Our White cells are the infection fighting cells and more than a few times throughout these last 10 months, Angelica’s white cell count has been almost completely decimated. I compared the White Blood Cells, one time before, to an army. Imagine different units within that army. Unit #1 does the actual fighting of the different diseases and infections and viruses; while Unit #2 does all the recon work and Unit #3 has all the previous battle plans and strategies stored and ready for the next time they come up against a particular adversary. Obviously, this is an oversimplification, but you get the idea???

Frisbee

Playing Frisbee with Josiah

This particular virus that Angelica just had was a common virus that 75% of children under 3 years old have already been exposed to and had and 90-100% of children under 5 have already been exposed to and had…….

This means that Angelica, at 14 years old, was just dealing with a virus that she’s already dealt with previously. Those particular White Blood Cells that would have remembered and quickly destroyed the virus, were destroyed in a prior “Chemo” Attack and so she got sick. The only other one of our kids that got sick with this particular virus is Judah……so there is a good chance that Xani, Jeremy and even Josiah who is 3 years old, have already had this particular virus, especially seeing as it is, apparently, quite a contagious virus.

The threat of Angelica picking up different bacterial or viral infections is less than if she were a toddler or a young elementary school age child. Geli is not crawling on the floor or rolling around on the floor or picking up random bits and pieces off the floor and putting them in her mouth. She does not put a lot of objects that have been laying around into her mouth, and she is of the age where she can practice good hand washing techniques which drastically cut down on the amount of “bugs” that she might pick up. She can recognize and avoid, openly sick people and all of those different measures contribute to her being able to do things like going to school or to a movie. There is still a risk of her coming in contact with a certain virus or bacteria in going out in public, but she is not at as much risk as if she were younger.

But, we do have 2 little ones in our house, and they are the perfect age and quite susceptible to pick up on all the routine viruses that most all children get. Under normal circumstances, we wouldn’t give it a second thought and they would pick up and deal with all of these different viruses and bacteria and build up their own sweet immune system and because we older ones have already dealt with a bunch of them, we’d have two cranky little ones, but we’d be able to deal with it without too much trouble.

Run, Boy! Run!

Run, Siah! Run!

Seeing as Geli’s immune system has been compromised AND any fevers mean a hospital stay until they figure out what is going on………we try our hardest to not place the little boys in a position where they might pick something up and bring it into our home to “share” with Angelica or anyone else for that matter.

This means no church, no play groups, no daycare or library time. There are no extra-curricular activities like swimming or gymnastics and we try to avoid the store during the busy times and often leave the boys at home, if it’s possible.

This has made for a very long and lonely year for me. I spend the majority of my time, in my house. We spend a large portion of time trying to create a safe place in our house. It’s not the easiest thing and I find that I feel like I’ve stepped out of the “world” and my life has stopped while the rest of your lives have carried on.

It’s a bizarre place to be in….

(to be continued….)

Magical Creatures…

I am just trying to survive.

I am on day 3 with a cranky, not feeling 100% baby who wants to be held ALL. THE. TIME! And, that would be almost okay if he would nap, but so far today we’ve done 2 naps for a combined total of 19 minutes. YAH! Cranky, OVERTIRED, Not Feeling Well Baby, for the win!

Sunshine

The house is um…..sort of somewhat tidyish, ya now minus the rice crisps that the baby was eating off the floor that he managed to smoosh into 5 million tiny shards. I still need to sweep those up, and I really should be folding the 4 loads of laundry and washing Geli’s bedding before she comes home tonight and all of that is kinda difficult to do with a cranky baby hanging off your hip. Did I mention that the baby weighs 30 pounds? Yah, cause doing anything while carrying around 30 pounds is not the easiest thing in the world.

I finally packed the boys up and put the baby in the stroller and we walked around our complex a few times and out and around the cul-de-sac just to get a bit for fresh air. Honestly, I had hoped that maybe this tired baby would crash, but no luck so far.

LaughterBUT…..he is playing on the floor in front of me, while I sit on the couch typing up this post, so that’s positive right.

I did manage to get a roast into the crock pot this morning and so at the very least dinner is taken care of.

Did ya catch that reference up there a few paragraphs back? Jon and Geli are coming home tonight.

As of 7pm tonight, the 48 hour time line for her blood to culture any bacteria is up and she gets to come home. It’s pretty much determined that it was just a virus and they don’t want her there any more than we do, and so we’ve asked to come home as soon as the 48 hr wait is up.

Her white count is actually coming up and her neutrophils were above .5 this morning and that’s a good thing. Bad thing was that even though she received red blood yesterday it only raised her levels by 15 points and that’s not enough to help her feel better. She was at a 71 yesterday for her hemoglobin and while some kids can tolerate being down as low as 60 or 50 something, Geli starts to feel pretty rough at 80 something….. She feels short of breath, and has headaches, and feels like her heart is pounding and is major dizzy and light headed. The chemo that she is getting hits it high point of effectiveness (the nadir) tomorrow and so some of her counts are still coming down. So the 85 that she hit as of this morning will probably end up back in the 70’s or lower as of tomorrow and so in order to deal with that, Geli is getting another “strawberry shake” today. Her platelets were also at a 20 and while that’s not the end of the world, we don’t want to have to be on pins and needles around her in case of cuts or bruises and so she is also getting platelets today. But after she gets filled full of red blood and platelets, she is good to come home! Hooray!

Brothers

I spent a quiet day at home with my boys. We sat outside for a while and it was so nice to just be outside in the sun. I love the sun. It makes me feel so happy. I’m so ready for spring and summer to be here. I love the snow in the winter, but the rain…..well, I’ve had enough rain this year.