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Today is Day 16 of the most recent trip to the hospital. Angelica has done the first dose of the current phase of treatment and has not shown any side effects. THAT IS AMAZING!!! Even while taking high dose chemo, she is continuing to improve in eating and feeling better. Her feeding tube will likely come out this week and she has not shown any sign of getting mouth sores.

With this phase of chemo she received a large dose of one of the meds through her IV, then waited for a little bit, and then she got what amounts to an antidote and the medication was flushed from her system. This usually takes two to four days and we did it in two…

Which makes today the last day of our stay!!! YAY!!!

We had asked everyone to pray for Angelica, that she would not get side effects, specifically mouth sores and she didn’t. We asked for prayer that we would get back together as a family as soon as possible and by being cleared today, that is exactly what is happening.

Thank you all for your prayers. You are an amazing group of people that are supporting us through this.

Jon

WELL… We’ve been in the hospital for 12 days now and most of those were spent getting Angelica healthy again (read here).  Her next round of chemo was to start when her blood counts were up to the right level and we were aiming for Tuesday. It seems that she was starting to feel better just in time, and would go straight into the next round without any days of actually feeling ok.

BUT… they were overbooked for the procedure room where they have to do the bone marrow biopsy before the next round starts so after a brief consultation in the morning they decided to wait one more day and start today.  I called Patti and then called the kids school and got Jeremy and Xandra out.  Patti picked them up and brought the other two boys in to see us and we actually got one day to see each other.  ALL SEVEN OF US TOGETHER FOR ONE DAY!!!  The weather was great and we went to Red Robin, Granville Island and Safeway (Gelica needed some snacky foods). It wasn’t enough time to make up for all the time we’ve spent apart, but it was great and totally unexpected.

THEN… As Angelica had not started her chemo yet she could go to the oncology teen group.  (they go out every four to six weeks and do some cool activity.)  They were going glow-in-the-dark bowling and having pizza.  Geli didn’t know if she could do the pizza so she brought her own soup and snacks and went and had a great time.  It was so great for her to have  a day to take her mind off of the hospital and enjoy herself before the next round.

FINALLY… today came and we started the next round. We got a bone marrow biopsy, a lumbar puncture with a small dose of chemo in her spinal fluid, six hours of pre-hydration and then a huge yellow bag (actually 1 small bag and two huge bags) of chemo that run for 24 hours.  Once this is in her, she will get another bag of liquid to stop the chemo from going to far and then a flush that should take most of the active chemo out of her system, and this takes another 2 – 3 days.  Best case scenario we go home Sunday.

PLEASE… Pray that Angelica does not develop mouth sores (known as mucositis), the most common side-effect of this drug.  Please pray that she flushes the drug quickly.  Please pray that she has great peace and confidence that things will go well for her.  Pray that Patti has peace at home, and that we would all be together as a family again really soon.

FROM… Jon

After a brutal few days few weeks, Angelica got up today and had a bit of a rough start, but we’ve started some probiotics and we’re heading in the right direction. Geli had a shower this morning (which we are all really thankfull for 😉 ), and then we grabbed her homework and headed down to the hospital ward kitchen. After a few minutes fussing with my computer to put some music on, I told Angelica to put on some music on her iPod.

So DJ Gelica is busting the tunes, buting through her homework and….

Singing… Like really loud. Like embarassingly loud. Except having a girl that was curled up in a ball and crying her eyes out on Sunday, now singing along to Big & Rich’s “Somebody’s got to be unafraid to lead the freak parade” and Francesca Battistelli’s “Free to be me”, well kind of makes me REALLY REALLY REALLY FREAKING HAPPY!!!

So I’m thinking happy thoughts… and I thought I would share with you some of the funner things.

1) Geli is on a feeding tube and getting her nutrition through there for right now. She’s tasting things here and there as she gets her strength and health back, but not eating meals just yet…. But nobody told the kitchen. So as of right now, I am getting trays of food for each meal. Geli gets to select her dishes from a small selection for each meal and she is ordering for my tastes. Good times!

2) The tube seems to be a topic of conversation. The doc was in yesterday saying that some teens do some realy wierd stuff with their feeding tubes and shared a few storied. (I’ll spare you the gross details), but Geli is working on a plan to swallow a Mento and then pump diet coke into her stomach at high speed. (http://www.youtube.com/watch?v=hKoB0MHVBvM). Good times!!

3) One of the social worker type people here popped in to our room the other day and Angelica was colouring. The lady (Her name is Pam) asked about her art and so Geli showed her a few pages. Pam got all excited and mumbled something about a calendar. Then about an hour late a dude named Dan came up to our room and explained that he was here to collec the art for the calendar. Seems that the “Balding For Dollars” folks put out a yearly calendar to raise funds and 12 pieces of art are chosen and the kids that submit them get a pic and a bio by there piece. Looks like Gelica will have another piece of art published. Good times!!!

Jon

(Beware: This turned into a long post.)

We’ve been in hospital for a five nights so far. We were admitted on September 18th in the afternoon as Angelica’s nausea had taken a turn for the worse and her temperature seemed to be climbing and her toes looked really infected and she looked off enough that we thought she should get checked out.

While we waited for test results to come back in, her temp continued to rise and before long, we passed the threshold where they have to admit her. As much as this is not a good way to hang out as a family, her nausea had been off and on and more on than off for six weeks. It has taken its toll on Angelica not just physically, but emotionally as well. She has been seeming a lot more “down” emotionally and as she was feeling worse, her emotions were dropping even faster.

The good folks here at BC Children’s seem to really care about that, and our oncologist said that he didn’t want to send her home till she was actually feeling really good. The first course of action was to give her every anti-nausea medicine (or anti-emetic) known to man (well there are probably a few odd meds that exist elsewhere in the world). AND… this didn’t do much to help her feel better. She was still gagging at the mention of food and that led us to the possibility that the nausea was “conditioned”.

There are three types of nausea in cancer treatment. Immediate nausea is where you take a medication and it makes you throw up. Delayed nausea is where you take a medication and the effects of the drug on your body bring you to a place of eventually feeling sick and it can be a week to 10 days later. Conditioned nausea is where your brain attaches various mental triggers to nausea and you gag at the mention of (whateveritis).

As she was having a temperature, we had the usual blood cultures to see if she had an infection.

Angelica was able to sleep through the night, and even sit and watch tv for a length of time with no problems, but if we asked do you want (insert name of food or drink) and she would immediately gag and sometimes throw up. She did not eat anything (or at least keep anything down) for Saturday, Sunday or Monday. She is on an IV solution that has dextrose in it, but that is not the required nutrition that she needs and having her body empty of fuel only added to the feelings of despair.

Basically she needed to eat to feel better, but the thought of swallowing made her gag and throw up. On top of that, she didn’t have the emotional energy to make herself eat. The entire thing just became an avalanche that was just piling on top of her.

As the blood tests were coming back negative for infection, and because of the abdominal pain they took a stool sample to see if there was an infection in the digestive tract.

At a meeting with the doc on Monday afternoon, she said that she wanted a feeding tube. When she presented her opinion on wanting to try it, it was the first active role she had taken in her own health care in weeks. This alone was an encouraging sign. My opinion was either that she would hate it and it would provide the added incentive to make herself eat or that it would give her nutrition that would make her feel better and lift her spirits. Either way it was worth a try.

Patti and I switched on Monday night (she came in and I went home). Patti spent all of Monday night and all of Tuesday and all of Tuesday night, helping Angelica and carrying her emotionally (while also caring for a two month old). The tube went in on Tuesday, but they started with a milk based formula, and if you’ve followed this blog for a while, you would know we don’t do milk and Geli complained right away about a gut ache from the milk.

As the stool samples wern’t coming back with anything, but Patti saw that Geli was peeing a lot, Patti asked for a urine culture to look for a urinary infection…. which came back positive for yeast. (Yeast grows rapidly in the body when there has been antibiotics used, as the antibiotics kill of the normal human digestive bacteria, which leaves nothing to halt the growth of the yeast. Yeast in turn eats at stomach linings, digestive tracts, and messes up all kinds of normal body function.)

We had to wait an entire day for them to get the dietitian here and to get the non-dairy formula ordered and delivered. After 2 nights, Patti was ready for some sleep (Gelica was up almost all of Tuesday night having panic attacks and feeling abdominal pain and crying).

Patti and I switched back on Wednesday and we started the feeding tube with the right formula. The change wasn’t dramatic, but throughout Wednesday she started acting and feeling better. Patti and I, now confident that we should have asked a little harder about getting her on a pro-biotic earlier felt that we should now push the issue, and so we called for a meeting with our Oncologist to talk about some dietary supplements that would help heal her gut.

“Leaky Gut Syndrome” is where yeast or chemicals or other disturbances in the intestinal tract create slightly larger holes in the intestines. The intestines are designed to “uptake” minerals, nutrients, amino acids, and the like as they are digested and broken down. When the holes in the cell walls are too big, they can uptake chunks that are too large or not broken down enough and that causes an auto-immune response. Symptoms can be low grade fever, abdominal pain, nausea, and a lack of nutrition in the body, even when a healthy diet is being consumed. (basically that describes Geli)

Our medical team is amazing!!! They are very smart and have done a great job and are also very open to anything that we might add as long as it is not a known antidote to chemo. We asked about putting her on a pro-biotic, a dietary enzyme, zinc and a children’s multivitamin. There was a brief discussion about the pro-biotic because introducing bacteria when your immune system is suppressed can be problematic, but it was agreed that it was worth it.

So today (Thursday) she has been on the NG tube with the right formula for over a day, had an amazing sleep last night, has been up laughing and enjoying herself, has been able to eat a popsicle (baby steps), and most of all, her spirits are up. She is acting more like the girl that is determined to fight this. She’s not all there yet, but well on her way.

She starts her next round of chemo on the 28th (its delayed a week) and they are probably just going to keep her here till that is done to make sure that she is feeling a lot better. They agree that 6 weeks of nausea is enough and see as committed to getting her feeling better and feeling happier.

We still need:
– her toes to completely heal and for there to be no infection spread from those
– her emotions and her spirit to continue to be lifted
– her not to get an infection or illness while her counts are low
– for her digestive tract to completely heal so that the pain and nausea goes for good

Thanks to all, Jon.