Category: Gelica

I dropped off Geli and Jon at BC Children’s Hospital this morning for her final dose of High Dose Methotrexate.

Here she is decorating her room for her 3/4 day stay…..

The way this whole 3-4 day thing works is that she shows up around 10am-ish on day 1 (today – Friday) and then gets hooked up to an IV and starts pre-hydrating. She has to hydrate for 6 hours and then the Chemo will start (at approx 4pm) and 5 liters of the medicine will flow into her over the next 24 hours. At 4 pm (approx) on Day 2 (Saturday) they will finish the Methotrexate and then take a blood test to determine the level of the drug in her body and they’ll start to administer the antidote. Based on how she’s done the last 3 times, she should clear the Methotrexate from her system by Day 3 (Sunday night) just before midnight and I’ll head into to pick her and Jon up on Day 4 (Monday) around noon-ish.

So, the kids and I are headed into our last “planned” weekend apart for the duration of her treatment. I’m hoping it passes by very quickly.

We had a GREAT talk with Tim, Geli’s Oncologist, today. He answered a bunch of questions and while we are not yet even at the half way point in this first intense stage of the treatment – we can definitely see that there is an end to this whole journey.

We have 3 stages left before Maintenance. Each stage is 8 weeks long. The first of these stages is basically a mini version of Induction (the very first Chemo treatment) and Consolidation (the second set of Chemo). The second stage is another set of Methotrexate, but instead of getting a dose of 5,000mg of Methotrexate – she gets 50mgs the first week, 100mgs the third week, 150mgs the 5th week and 200mgs the 7th week……that seems so insignificant compared to 5,000 milligrams – doesn’t it? The third stage is another mini repeat of Induction and Consolidation, with the added bonus of Cranial Radiation thrown in.

That should take us up to May-ish 2011 and at that point we start Maintenance…….which we continue on with until September 30th, 2012 or there abouts.

So we are still quite a long ways off, but as horrible as it is, there is a familiarity to these treatments (minus the radiation) and we are expecting Geli to respond quite well. Her counts are expected to be quite low still and there are still a number of appointments that will take us in and out – so we are not quite into the party stage of things just yet.

Despite, the length of time and treatment yet to go, its just so nice to walk away from a meeting feeling positive & hopeful and not stressed & discouraged.

Geli is doing well, and her spirits are up. Her Homebound teacher has mentioned that Geli is doing extremely well and is handling the whole “school & home learning” really well. She is staying on top of her schoolwork and really enjoying participating in class, as she feels up to it.

Her toes, that had caused her so much trouble, have been doing SO. MUCH. BETTER! The ingrown nails had pretty much grown out and the infection was pretty much gone and then two weeks ago she stubbed her big toe and chipped a GIANT chunk out of her big toe nail and now we have been attempting damage control to hopefully prevent any ingrown toenail and subsequent infection.

It’s quite possible that her hair might fall out again in this next round. One of the drugs that she took in the first round is the main culprit for the hair falling out last time and she’s up against it again and so we shall see what this next stage brings. We’re expecting her to have a better time around this second run through this treatment because instead of her bone marrow being full of leukemia cells she had (at last count a few weeks ago) just over 25% of normal cells.

So basically, her marrow was full of leukemia cells….they killed all of those off and now the good healthy strong cells are taking back ground. This is a very good thing.

It looks like we’ll have the week between Christmas and New Years off of treatment and we’re looking forward to that.

Thanks for all your prayers, love and support. Once again, we are so grateful and thankful for you all.

I’ve been asked this question or a variation of it a few times….and so I thought that I’d answer it here, as I’m sure that someone else has wondered about this too.

Angelica’s immune system is currently suppressed. Normally, (like for you or I) we have a certain number of blood cells in our body that have specific jobs. Think of the different blood cells as soldiers. Some help to fight off viruses and bacteria, some remember which bacteria and viruses you have come up against in the past and what the best strategy was to defeat them…..and there are a bunch more.

You and I have tons of big strong healthy good soldiers and new, strong healthy soldiers are always joining and learning from the older, wiser, more mature soldiers. Normally when something bad tries to get inside of you, the good guys identify it as a bad guy and then they work to destroy it and they win and all is well inside the world that is you. But sometimes, a zombie gets in with the healthy guys and these zombies….they are sneaky. They can manage to sneak past all the fighter soldiers and then when you’re not looking…..BAM….they bite you, and now your one zombie is now two zombies and then they multiply rapidly from there….

This is what happened with Geli and by the time they diagnosed her, her bone marrow was filled with 85-90% cancer cells. The cancer cells (zombies) had destroyed most of her good cells. Without treatment, the prognosis is death….it progresses quite rapidly once the concentration reaches that stage.

BUT…..right now, they have killed all the cancer zombies that they could find and at the last Bone Marrow Biopsy, Angelica’s bone marrow had about 25% good healthy cells. Not bad considering that they basically dropped an Atomic Bomb (of Chemotherapy) on her and nuked everything good and bad.

This is the extremely condensed and much simplified version.

So because she is continually on Chemotherapy (and will be on the Intense Side of Chemo treatment for the next 27 weeks or so and then she’ll be on Maintenance which is a lower dose treatment until October 2012) she doesn’t have a lot of soldiers. Some times she has more and some times she has less, but to put it into perspective…..Angelica is allowed to go to school when she has a minimum of 500 soldiers. The low end of normal is 4600 soldiers and the high end of normal is 10,800.

As you can see there is quite a difference between having 500 soldiers or having 5,000 soldiers….now add into that that lots of the time, the “soldiers” that are working for Geli are young, immature or weak soldiers and it just all gets messy doesn’t it?

This is why we are trying to be careful with her and who she comes into contact with.

It basically comes down to calculated risks.

It’s important to us that she be allowed to do “typical” things that will help her spirits to feel positive and uplifted. Depression is a horrible thing that no one wants to have to deal with. To have to fight through depression on top of fighting off cancer….really, really REALLY SUPER NOT COOL! And so, we let her go to school. We encourage her to connect with her friends. We let her try to be a “normal” teenager doing “normal” teenage things when the reality can be so far from normal. We pray that she doesn’t get sick. We tell her to avoid sick people as much as she can. We give her “Purell” to wash her hands lots and we tell her to take any and all precautions that she can and that she remembers to……while trying to be as normal as possible…..while bald….and tired……and out of breath……and add on top of that that she’s not “really” attending school. Some days, it’s just one class and even when she goes, she’s basically allowed to audit the classes and she can receive material from the teachers, but every things has to be handed in to her “homebound teacher” who she meets with one a week (hopefully) at home! It’s not normal, but if she can go to school, be with her friends and forget about not feeling well, or being tired, or having to go into the hospital….if she can forget about the chemo and the cancer, and how hard it is sometimes…..even for just a moment, then it makes it all worth it. All the stress and worry and concern that we might feel about “exposing” her to “all the crap out there” is nothing compared her forgetting about it all and “just being normal.”

Most of the rest of the time, we avoid crowds and crowded areas. Everyone in our family does, as much as possible. We spend most of our time, at home or outside away from people. To do things like shopping or even going out for a meal, we attempt to go at “down” times. For example, I try to shop early in the morning so that the stores have relatively few people and even at that….if someone is coming towards me down an aisle and they are coughing and hacking and look like death warmed over – I will actually leave that aisle and come back to it later. It’s not worth it for me to risk that I or Judah or Siah might get sick and bring it home to Geli.

It’s not always easy or the most convenient, but aside from school, we are doing what we can to avoid illness over here.

For whatever reason, her counts this round have been pretty good and she’s stayed up over the 500 mark, so far. This is amazing and we are so thankful for it. The next round is a mini repeat of the very first round that she went through and that one decimated her “soldiers” down so low that they could no longer count them….below 50 they can’t count them and it’s basically considered at that point that she has pretty much “no” protection.

So, we continue to pray that she remains healthy and we carry on.

So, in answer to some of the questions out there, no, we are not participating in “normal” activities aside from Geli being allowed to go to school sometimes. Xandra and Jeremy do go to school and their classes have been talked to about being extra super careful with colds and coughs. Sometimes, rarely, the older two kids have gone to church, but we’re not taking Geli or the youngest boys….and even with all of our being careful, Josiah has managed to pick up two colds over the past 2 months. There are no Mom’s Groups or preschool or library events, no public pool swimming, no fun play places, and no group activities.

We have done two family events but polled the family to see if anyone was sick and fortunately…..everyone was healthy or else we would not have been able to go.

This is a season…not a fun season and sometimes it’s a lonely season. It’s most definitely a tired and emotional season, but it’s a season, none the less and…….SEASONS CHANGE!

Yes, this is a pretty long season, but in the grand scheme of life, it’s one year (or 2.5 years in total) out of 100! (That’s a post for another day, but I plan to live to 100 years old, at least!) It is staring us in the face right now, and sometimes it even feels like we’re being screamed at, but one day we’ll look back and this will just be a blip on the radar of our lives.

Until then, we make the very best decisions that we can. We hold onto hope. We look for joy. We pray for health and strength and peace. We live. This is the year that we fight, with everything in us, for life, for Angelica’s life…

…and WE WILL WIN!

Well, it’s been a while since I’ve posted anything….things have just been so crazy busy around here and I’ve really not had much of any time to sit and I’ve only recently gotten my computer back.

Since Jon decided to see if his computer would survive a trip into Vancouver on the top of the van (it didn’t), he’s been stealing mine when he goes into the hospital and when he goes into work. This, most decidedly, makes me grumpy. I like my computer. I want my computer, but I’ll grudgingly admit that he needs to work and so……mumble, mumble, mumble……

Things are so busy around here and like Jon mentioned it’s not always easy. I mean, if you look at it big picture, Geli is flying through this phase comparatively, but because of the weeks of feeling crappy on top of feeling crappy 2 weeks ago after the first massive dose of chemo…..all she can see and feel and sense is the right here and right now.

I actually yelled at her last night in an effort to cut through the fog and misery that she was feeling. She starts to feel better starting today. She’s not gonna feel perfect today, barring a miracle, but she should start to feel better today and then as each day passes, she should progressively feel better and better and better.

She’s been so focused on how she’s feeling and it just runs into the LOOOOOONG string of days that she’s not been feeling well and all she could see was here and now. I yelled at her that she needed to understand that today was probably the “worst” that she was gonna feel and compared to 2 weeks ago….she’s not barfed ONCE this week. She has gagged twice. At this time 2 weeks ago, she had barfed multiple times on Tues, Wed, Thurs and Fri…..mostly because she got so low and not eating.

Once she was listening to me and really hearing what I was saying, I asked her if she could power through the rest of the evening knowing that she just needed to make it through the rest of the day and that the next day would be a better day, and somehow, something triggered. I had mentioned that we were looking for highest number of calories in the least amount of food and her eyes light up….could she have some ice cream? Of course, she could have ice cream….but I bribed her that she’d need to eat one ham sandwich before she got any ice cream and VOILA…..just like that our entire evening changed from her feeling hopeless to her “getting it” that the way that she was feeling was not a long term thing and that if she could just stick it out a little longer that she’d be over the hump and headed into happy town…….

This is probably once of the hardest parts for me….she’s a little girl and a young lady all rolled into one body. Sometimes, she knows and “gets it” and sometimes it’s just too overwhelming. Even I don’t always make the wise choices in my life and I’m supposed to be a mature adult……I can’t expect her to get it always either, but when she does “get it”, it makes things so much easier on all of us. But to know that if she just did “this” that it would make this other thing easier or better for her, is hard. I don’t want to see her hurting. This whole thing is hard. I hate pushing her but I hate seeing her hurt even more.

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.

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!