Category: Jon

Just Holding On

If you’re thinking about us and able to pray for something specific…..

Jon and I tired!

We are feeling the effects of the last 7 months of stress and we’re exhausted!

I’m not feeling depressed and/or sad, just unbelievable tired and really worn down. In some ways we are looking forward, excitedly, to moving on to the final maintenance stage. There are 7 stages of this Leukemia Treatment. We’ve completed 3 and are 1 week away from completing the 4th stage. There are 2 more “active” or “intensive” stages and then we enter the maintenance stage which will last until the end of September 2012. But basically, Angelica should be finished the end of stage 6 somewhere around the end of May/beginning of June. It’s getting closer. We can see it. We can see that there is light at the end of this tunnel. We are excited about this. We are looking forward to what amazing adventures this summer will bring for our family after a year of intensive chemotherapy. Looking forward, we are so excited.

And yet, physically, we are exhausted!

Our bodies are so tired. We have been going so fast, so hard, for so long and we are finding that the pace and stress are taking their toll.

I’m finding that mentally, I’m not as sharp and “on the ball” as I was and I totally believe that it’s the fatigue affecting me. It’s affecting my ability to plan and organize and remember and keep on top of things. With 7 people in our family, chemotherapy, schedules, doctor’s appointments, school events and homework, counseling appointments, family organization, etc…..I’m finding that things that would have been a snap for me to do, co-ordinate and remember…..well, I’m dropping the balls on lot of things and this only adds to the chaos. In the long run, this ends up placing more demands on our time and energy and that’s not cool. Physically, I’m in constant pain. I’ve hurt my arm and shoulder carrying our sweet (but very heavy) baby while still trying to accomplish everything that needs to be accomplished. The constant pain is wearing and yet…..things still need to get done. I’m trying to walk the line between actually “damaging” my arm and waiting and hoping that things ease up over here.

Jon and I are lonely for and missing each other. Our “time together” and “relationship” are another thing that has received a blow from this whole situation. We are doing okay. Don’t get me wrong. Our marriage is not “on the rocks”, we are just missing each other terribly. I would say that instead of “growing” closer together right now, we are just “holding” and sometimes……just holding steady is okay.

We know that we have the rest of our lives to make up for this time, but that doesn’t change the fact that we are missing each other right now. One of the hard things about right now, is that when we do have the rare opportunity to “be away from it all” and to just “be together”….the thought of organizing and planning an evening requires more effort than just keeping on, keeping on. Often, its more difficult to have to arrange someone to watch the kids and to try to figure out where we can park our tired selves for a few hours….and at this point, we are so tired that we can hardly form coherent sentences, let alone carry on relationship building conversation and so we end up frustrated and still tired.

I keep telling myself that this is only a season. I know this. I know that this time will pass and we will not always be in this position, but that doesn’t change how tired I feel “right now“….or how difficult all of this is.

This is a difficult time and we are trying desperately to just hold on.

So, if you’re thinking about us and able to pray for something specific…..

We’re tired and need to be able to hold on for just a little bit longer.

Thank you!

Other Side Effects

A little perspective from me (Jon)…

I remember clearly the January day in 2005 when Patti looked at me with a worried look on her face and said that she wasn’t feeling the baby move. I remember the Sunday afternoon, feeling tired and wanting to take a nap. I remember thinking about the emotions of a pregnant woman and being thankful that this pregnancy was getting close to a conclusion. I said to Patti, “What could really be wrong? If you haven’t felt him move by later this afternoon then we can go to the hospital and they can do their Doppler thing and you can hear the heart beat and they can tell you that everything is OK.” Then I went and took a nap.

The events of that day are forever embedded in my mind because that was the day that I lost my naivety. As you can discover from reading older posts, we lost our son Nathaniel. That was one of those things that was “never going to happen to us”.

I’m not sure why we tend to excuse ourselves from tragedy, but we do. We think that “bad things don’t happen to good people.” We think that if something bad happens once that we have “had our share of problems” or “paid our dues”, implying that tragedy will over-look us in the future. Coming face to face with tragedy, illness, death, financial catastrophe may do many and different things to each person, but one thing is common to all, we loose some naivety.

Loosing our son rocked us individually, it rocked our marriage, it changed our perspective on life, on relationship with God. It made us stronger and it made us more fragile. Having Angelica diagnosed with Leukemia this summer took another blow at our naivety. I can’t say what the end result will be, because we are still in the throws of shock and coping and cleaning and sanitizing and the emotional randomness that exists in our home. I can say that loosing naivety makes you a little weaker; not as bold and unquestioningly confident.

I called this post “side effects” because side effects are the unintended or unexpected or unpredictable consequences to an otherwise straightforward course of action. For example, Angelica gets a drug that will help to stop the reproduction of Leukemia cells and at the same time build up blood marrow… the side effect was temporary diabetes.

Getting to the point… Blood cancers are often discovered while treating “flu like symptoms” and when those symptoms present in another of your children, there is nothing to stop you from mentally wondering “what if”… The other night our baby, Judah, was feeling ill. He had a fever and signs of the flu. He had also had some sort of digestive problem where he has had a lot of diarrhea and sometimes a bit of blood and mucus in his stool. As the evening wore on, I could see that Patti’s anxiety was growing. As we went to bed, Patti was really concerned and I was laying there beside her and felt unable to console her… or myself for that matter. I can no longer say “everything is ok”. I can no longer say “you’re over-reacting”. I can also no longer shrug it off and forget about it. I am now aware that this kind of thing can happen. I am now aware that it can happen to good people. I am now aware that “lightning can strike twice.”

I brought this up at BC Children’s hospital at our last appointment and discovered that the oncology clinic there commonly writes orders for blood counts for siblings and parents of oncology patients, because as it would turn out, this is a common “side effect”.

After seeing a doctor, and checking things out, we know that Judah is OK. He had the flu and is mostly healed and is acting much healthier, but the naivety that something could go wrong is gone. Now this doesn’t make us pessimistic, where we sit around expecting catastrophes all the time… far from it. We expect that things will go well with us and we expect there to be blessings that come our way. We actually remain optimistic… but when “symptoms” of something negative start to appear, they are not as easy to dismiss.

~ Jon ~

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

So Far, So Good, So Thank You

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

UP… next

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

on the lighter side

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

Angelica Update – Sept 22nd.

(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.

So Much More…

Things have been quiet around this here blog, not because of a lack of things happening, but exactly the opposite…

To make a looooooong story short(er), Angelica’s counts are low….like really REALLY LOW! This is good and bad.

It’s good because the meds are working the way they should, and Geil’s body is responding to the meds and it’s bad because she is at a much greater risk for infection right now.

The infection in her feet is still present and right now it’s bothering her. There is infection in the tissue surrounding the toenails but it’s not in the blood which is a good thing. Her feet are hurting and she does not really have enough “infection fighting cells” to get rid of the infection. This means that we need to go back onto antibiotics to try and back the infection down so that it stays in check.

We’d love prayer that her toenails would grow out quickly and not be ingrown anymore. That the infection in the tissue would be completely gone and that the new antibiotic that she’s on would not affect her stomach. We believe that it was the original antibiotic that caused the massive stomach pain, nausea, vomiting and the subsequent weight loss…..

I’m feeling quite nervous about putting her back onto oral antibiotics but the alternative is hospitalization and no one wants that for her….especially over toes.

We really need the whole issue with the toes to be resolved and the Dr believes it could be 2-3 months before her toenails grow out sufficiently to make this a non factor…..that’s not cool.

Aside from that, we are feeling a bit discouraged and feeling like we’ve been hit one too many times recently. We’ve had to fix our van, our washing machine is showing signs that it’s gonna bite the dust shortly, Jon lost his phone a few weeks ago, and on Sunday morning he put his computer on the roof of the van while he got something else ready, and then somehow managed to drive away with it still on the roof. Our minds have just been too full and overloaded with too many things. It stayed for the ride until the highway and then crashed at a 100 kilometers per hour. Needless to say, it did not survive the crash and he lost a HUGE project he was working on for his Programming Business.

He had some of the stuff on his laptop backed up but not everything and while nothing is irreplaceable….it’s gonna take time and energy, both of which are on short supply at this point. It also makes you feel a bit frustrated and stupid when you make mistakes or cause accidents like this….ones that could have been avoided or that you wouldn’t normally make but because you are trying to juggle so many different things……..

There is just so much more to deal with, to talk about to share, to go through, to do…..there is just so much more, and so we ask for your prayers for us all.

Lollipop

DSC00698

Siah & Jude say “Hi”

Jon’s phone has that stupid feature where it guesses what word you are trying to type when you are texting. He was getting quite frustrated when they were in the hospital because it kept substituting words for him that he didn’t want or need. At one point, he was trying to type “lol” and he typed “lol” into the phone and pressed send…..it sent through “lollipop” and it made us laugh….it’s not really very funny, but at that point it was one of those “laugh or cry” scenarios and well….ya might as well laugh.

From that point on, “lollipop” meant “lol”…..

Angelica and Jon are home.

They came home last night around 6:00pm. Angelica is still not feeling one hundred percent and they could and would have kept her but she “sort of” wanted to come home. “Sort of” meaning that she really didn’t want to be in the hospital, but she really wasn’t feeling well enough to be making a choice either way.

They haven’t really been able to figure out what was wrong with her. They have ruled out a bacterial infection, and so at this point it could be viral or it could be something called the “Ara-C Syndrome”. Regardless, of everything, the headache is the WORST. On a scale of 1 to 10…she has pretty much had a constant headache in the 4-8 range for the past 6 days….it’s been bad enough that she’s been prescribed some morphine to be able to deal with it. But, the morphine TOTALLY drugs her right out. It’s equal parts sad and amusing. She hasn’t had any morphine since she came home AND she’s only barfed once…..both of these are massive, MASSIVE improvements over how’s she’s been feeling the past few days.

Her fever is gone. Her headache is typically around a 2-4 and now if she could just start eating and drinking a bit more….then I think that she could get a bit more energy……

She is headed back into Children’s tomorrow morning with an 8am appointment to have one more lumbar puncture and one dose of an IV chemo and then hopefully, we are praying that this next week is a quite AWESOME AMAZING WEEK.

Currently, most of her blood counts are doing really well, considering. They are not normal, but they are on the high end of low and if she was just feeling a bit better, then this could be a really great week for her (and us).

My one sister is taking Jeremy camping this week and my other sister has already taken Xandra camping. I’m hoping and praying that with just Geli, Siah and Judah that I’ll actually be able to get caught up on some things around the house.

There are too many things that have been missed or left undone or, worse, left to pile up and I feel like I can see that I “might get to the place” where I could see the light at the end of the tunnel….as far as my house “stuff” goes…..

Oh well, here’s hoping and praying for that quiet week…..