Category: Cancer Sucks

I wish there were easy answers

We’ve made it through the second dose of the high-dose chemo for this phase. We have two more doses to go. Angelica is getting almost 5 litres of chemo over 24 hours and then getting it flushed out for the next 48 hours and then sent home to recover. The dose they give is expected to be too high for 70% of the kids that they give it to (as in the side effects are so severe that they can’t take the full dose and need to have it reduced). Of the 30% that can take the dose at full strength, it normally takes a lot longer than 48 hours to flush it down to below the desired level. Nobody clears it in less than 48… except Angelica. She clears in 36 hours or less, which is not in any way normal. We repeat this schedule once every two weeks, so three days in the hospital and ten – eleven days at home.

All of this means that we don’t have to stay in the hospital any longer than necessary, which is very good. But it doesn’t mean that we get off scott-free. The massive dose of chemo does take its toll on the body and and the first week of being at home is rough. For Angelica, everything tastes off or bad, so nothing gets eaten. An empty stomach hurts and makes her feel weak and nauseous. And if she is not really diligent, then she ends up with not enough calories going in and starting to feel really sick and low blood sugar and emotionally drained and that just starts to be a big deep hole.

Then we end up with scenarios like last night where Patti and I are sitting up late at night with her forcing her to eat food, while she cries and sobs, and for a dad, that is really hard to see and have to do. I am sure it is even harder for her. This morning she woke up feeling a bit better which we knew would happen, but its all really hard.

Angelica acts at times like a mature kid who can carry a lot of this on her shoulders like its not that big of a deal, but she is just 13 and that shows through a lot too. I get the picture of standing on a nail and having it hurt, and the pain is almost tolerable while I stand there on the nail, but it will feel a lot better when I get the nail out of my foot, but removing it hurts a lot immediately. Angelica feels off and as long as she doesn’t do anything it is almost bearable, but if she stays there too long then it will only get worse. Making herself eat seems like the worse option except she will feel better when she does. She has the intelligence to understand this but not the maturity yet to avoid going down into the pit of helpless agony. No 13 year old should ever have to have that maturity!!!

Yet, this is where we are. We are happy to be home and to be able to do this as a family. We are thankful that Angelica is having very little in the way of side effects from this chemo. Yet we are finding it difficult to know how to steer her through this; how much to force her, how much to allow her to choose, how much to explain, how much to tolerate. I wish there were easy answers to these questions.

Thanks to everyone for your prayers and support.

Jon

Day 15

Geli has been admitted to the hospital again for the second dose of this cycle’s chemotherapy.

The first dose went absolutely as well as it possibly could have gone while she was in the hospital.

The way this round of chemo works is that Angelica is getting 3 different types of chemo for the 9 weeks of this cycle. One she takes every day by pill. The other two she gets once every two weeks. One she gets over 15 minutes through her IV port in her chest and the third one is a High Dose drug that is given over a 24 hour period.

Geli had been so sick for the two weeks leading up to the start of this cycle and had only just started to feel slightly better when we had to start this cycle. We really weren’t sure what to expect and the thing that everyone had been “freaking about” were the mouth sores. Considering that Gel hadn’t been eating really much of anything and had ended up getting a feeding tube, we really didn’t know what we were getting into. Often the fear of the unknown is WAY WORSE than what actually ends up happening.

Geli started the Chemo on a Thursday and the best case scenario was that the chemo would flush out of her system and that she’d get to come home on the Sunday. They give her the high dose over a 24 hour period and then they give the antidote to the chemo, because if it was allowed to continue on in her body, it would kill her. They they flush her system and wait until the concentration of the chemo drug in her body is down below a certain level. Imagine our surprise when they informed us that she was able to go…..on Sunday. What was even more amazing was that she was feeling pretty good considering how poorly she had been feeling.

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This was right after the tube had been placed.
She was so hungry and was so looking forward to not feeling like she was starving.
At this point she hadn’t eaten in 4-5 days.

I was a little nervous because she had the feeding tube in and now we had to deal with all of the fun that brings, only at home…..which meant that we were responsibly for it all. AAAAAWWWKKK! Basically we were feeding her meal replacement shakes or formula. But, we were so excited that she was doing well(ish) and that she had cleared the chemo in a great time.

She did end up getting some mouth sores right all around the inside edges of her lips and they hurt pretty bad. Like she wouldn’t drink from a glass because it hurt that bad. She was using a syringe to shoot water into her mouth. It’s not a fun thing to deal with and yet, she is such a trooper.

And then on Tuesday night, in the middle of the night, she started barfing. We finally got her anti-nausea meds back on board and by Friday morning she was starting to feel better again.

The worse part was on Thursday. She managed to barf up her feeding tube. And I put it back in. I was freaking and panicking on the inside but on the outside I acted so calm and like it was no big deal…….I routinely place feeding tubes up my children’s noses and down their throats and into their stomachs. And, if it weren’t bad enough to just do it the once…..she managed to throw the tube of twice more that day. Once in the evening and then again in the middle of the night…..After the third time, she said enough was enough and that we’d think about it some more in the morning….this of course freaked me out because she still wasn’t eating anything or drinking anything and obviously was still barfing.

But then, she woke up on Friday morning, and between the anti-nausea meds and whatever ever else was working…..she was feeling a bit better. Not up to par, but definitely better. And so we left the tube out and I tried not to panic about what she wasn’t eating and drinking and so desperately tried to focus on what she was eating and drinking….which was precious little, but compared to the past few days was HUGE!

Every day since then she has gotten better and at this point, for the past 3-4 days, she is feeling the best that she’s felt in almost 3 months. And even now, she’s still not “normal” just WAY better than she has been.

And so our plan going into today is to get through the next 4 days of treatment and hopefully be able to come home on Sunday. We are doing ALL we can to minimize the mouth sores and will start the anti-nausea meds on Monday or Tuesday in the hopes of avoiding the icky feeling and vomiting.

If you are looking for things to be praying for, please pray
1) that there will be no mouth sores this time around.
2) that Geli will continue to feel stronger and better and that she won’t end up getting sick
3) that her weight would continue to rise (she lost more than 15 pounds)
4) that all of us would remain healthy
5) that peace would reign in our hearts and in the home
6) that Jon and Geli would have some great “moments” in the hospital
7) that the kids and I would have some great “moments” together at home
8) that everyone would get great rest….sleep is often elusive around here these days

I’m sure that as soon as I post this, that I’ll remember something else…..Oh well, if I do – I’ll just add it later.

Thanks so much for your love and support. I cannot fully explain just how appreciative we are of all of you.

Thank You!

Some Catching Up

I’ve got a bunch of pictures that I want to put up here and some stories that got lost in the chaos of the two weeks in the hospital and the subsequent 1 terrible, horrible, no good week that I’ve not blogged about yet….so I’m gonna try to catch up and update all at the same time.  It’ll either be brilliant or a massive verbal diarrhea – We’ll see, eh?

I’ve received a few requests for our address and also a few offers to help out and while I am so appreciative and thankful – this “humbly accepting help” and not just “telling everyone that it’s no big deal, that you can do it all on your own“……this is difficult.  I’ve wanted to respond and say “No, really, we’re fine.  We’re totally okay. We can do this.  Don’t worry about it.”  and yet, it’s not true and so I swallow and breathe and say “thank you” and it feels so wrong and yet I need the help so badly.  What a totally messed up head trip this all is.  Man!

I also wanted to mention that I in no way am belittling the help that we have already received in meals, and gifts and finances and help, especially from our family who have helped so much.  Everyone who has given has made a huge impact and again…..I’m so SO Thankful.  We would not have made it this far without each and everyone of you.

……………

Lets go back…..Way back, before all the crazy hospital time.  Actually, “the crazy” started way before this, but we’re just gonna go back to the day before my birthday….well, there’s a little lead up and then we’re going back to the 17th of September.

Geli had been feeling “off” for quite a while.  It’s been about 9-10 weeks now, but she had been on oral antibiotics for about 6 weeks to try to combat some infection as a result of some ingrown toe nails.  In the 2 weeks before she was hospitalized, she’d been doing REALLY poorly.  The nausea and vomiting was horrid and she was on 3 different anti-nausea meds and was still barfing.  She was not eating a lot and right before they admitted her, she had pretty much stopped eating because she’d been feeling sick and or barfing for over a month and she couldn’t handle the thought of barfing anymore.  Not eating made her feel worse but the fear of barfing was overwhelming her.

We were trying with everything in our power to convince her to eat, mouthful, by mouthful and at the same time we were attempting to get her to drink the recommended 2Litres of water per day.  Trying to gauge how much she was drinking versus how much she was throwing up versus how much she might have actually kept down while at the same time “encouraging” her to drink while she was fighting putting anything inside of her……this whole scenario felt like it was slowly destroying both her and me.

All this time, Xani kept asking about having a birthday party to celebrate her birthday.  Her actual birthday is June 30th.  That would be 14 days from Geli’s diagnosis, and 4 days from Judah’s birth. It was such an insane time.  We had vaguely tried to throw something together over the summer but it didn’t happen and we didn’t try so hard to “force” it to happen.  I just promised her that we’d do something after school started in the fall and we thought that the weekend of the 17, 18, 19 would be good for Geli and her counts too. HA!

As the date got closer, Xani kept asking about it and I very wearily attempted to put something together that would be fun and easy and be a special celebration of her 12th Birthday with her friends.

Angelica helped me to decorate the house on that day and the distraction of it all was good for her. 

We made her a hat just for fun and also made flag streamers.  I dunno if we even got any pictures of the streamers?

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Here they are….you can see them peeking out of the top of the photo…..as I’m going through these pictures and talking about this event…it honestly feels like it was a life time ago and not just under a month ago.  My life has some bizarre “time warp thingy” going on right now.  Everything feels like it happened a million life times ago or like it was yesterday and there is no rhyme or reason to it.

She had asked about having an ice cream cake from Dairy Queen.  We typically don’t eat dairy and ice cream would definitely fall under the “dairy” category.  In the past, I’ve baked a cake that Siah (with a dairy and egg allergy) could eat or else I’ve just bought a cake and gotten something else similar that Siah could eat.  The reason why the rest of us don’t eat dairy, is not because we are allergic to it, but the rest of us have sensitivities to it and it makes us feel pretty nasty if we eat it.

In the middle of all that was happening, I had the bright or maybe insane idea to “make” an ice cream cake.

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I ran out to the store and bought  3 tubs of soy ice cream – one chocolate, one vanilla, and one strawberry – and a bag of Oreo cookies.

I opened up all the cookies and scraped out the insides and then crushed the cookies into crumble.  I let the ice cream soften and then started building.

I put a layer of Chocolate into a pan, and then smooshed the cookie crumble in on top of it.  I, then, added a layer of the strawberry and then the layer of vanilla.  I sprinkled the remainder of the cookie crumble on top  of the cake and added gum balls all around the edges.

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It looked fabulous and tasted great and the best part……..it didn’t make anyone feel icky because of the dairy.

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Xandra had a great party and enjoyed herself.  I was just so glad when it was all over.  How sad is that?

Laying Aside The Pride…….

This is a difficult post for me to write.

I need help.

I hate asking for help. I hate needing help. I’ve taken great pride in being able to take care of my family on my own and now……..now I am coming humbly and asking for help.

Up until now, I’ve been trying to “do” everything and honestly, we are not doing well. I am not doing well. I feel completely overwhelmed and like I am at my breaking point. I, personally, have had one too many melt downs just recently and I need to be a bit stronger to deal with the demands on my time and energy for the long haul. I’d like to say that were it not for all this cancer crap, that I’d be doing okay but…..we are dealing with cancer and 5 kids and all the craziness and chaos that surrounds us.

I’ll do a more detailed update on how we (individually) are all doing soon, but honestly, it’s not pretty. It’s pretty rough over here and we have a long road ahead of us.

There are about 32 weeks of Intensive Chemotherapy Treatment left for Angelica before she starts the maintenance stage. This (the maintenance stage) is when our Doctor has talked about things getting back to more of a normal stage of life. Until then, not counting any time for delays, we are looking at more than 6 months of treatment. That’s a long time!

Right now, we feel like we are barely hanging on and while we’ve had offers of help in the past, we just didn’t know what to do with the help. And…..I thought I’d be able to deal with everything.

And so, to anyone who has offered or is interested, I’m asking for help!

There are so many ways that someone could help. It doesn’t have to be a huge commitment. It could be a one time commitment, or weekly or even monthly. It could be 15 minutes or longer and there are many different ways that you could help. From cleaning, to meals, to helping with the kids, to sending a card or e-mail – anything that helps to lift some of the burden from us would be amazing.

The strain of dealing with the Chemotherapy Treatment is SO MUCH GREATER than just some physical discomfort for Angelica. Walking your child through the Treatment is a full time job. There are the physical issues that come as a result of the treatment like nausea, vomiting, mouth sores, weight loss, lack of appetite, muscle loss due to inactivity as a result of the physical devastation of the chemo drugs, insomnia, fatigue and pain. There is the mental anguish and fear from everything going on and not understanding 100%, to the fear of the unknown and the future. There is the schedule of treatment. It’s a brutal wicked schedule and the treatment center is an hour away from us, more if there is traffic. It is a huge thing to deal with.

Add in 4 other children each with their own specific needs and add on top of that the fear and confusion of having a sister dealing with cancer and a mom and dad who are distracted and overwhelmed and not available in the way that they have been.

Add in 2 jobs, neither of which are being done well. Add in the extra house work and meals and school work, oh and the stress of not having any time to invest in each other or the kids, individually, throw in finances and you have an unbelievable recipe for disaster. This is not even the whole picture……

I’m not trying to whine and complain. Realistically, this is just where we are at.

We are so grateful and thankful for every thing, big and small that we’ve been blessed with. We have been so SO blessed by so many.

If you have offered to help or are interested in helping, we are at the place where we are willing to accept it and we hope that we have an easy way to explain what we need.

We are not expecting anything and right now, we have nothing more than our gratefulness and thankfulness to offer in return.

But…….if you are interested in helping, please click here and see the sheet that we’ve created with some of the details.