Month: May 2011

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?

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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!