Health – Page 9 – xangelle.com

Stolen Moments

The day that Geli was scheduled to start this current phase of treatment, the oncology clinic was slammed with too any cases and to try to squeeze Geli in would have caused some issues and so they bumped her treatment for one day.

Jon called me that morning to let me know that they were kicking Geli out on a day pass. In about 5 minutes, we had decided to yank the kids from school and come in for the day.

The kids were SO excited to be going in to see Geli and Jon. Because the kids had been sick with coughs and colds, we’d not seen Jon or Geli in almost 2 weeks and it was tough on all of us.

We made it in to the hospital just after noon and Geli had until 4pm before she needed to be back at the hospital for her next dose of antibiotics. We went to Red Robin’s for lunch and after we headed down to Granville Island.

We went to the Kidzone area in Granville Island and the kids had a blast.

They LOVE the skeeball game……and Geli had fun showing/helping Siah to play.

I walked around holding the baby and snapping pictures and just enjoying my family enjoying each other.

There were lots of laughs and lots of smiles and the kids seemed genuinely happy to see each other. They all played SO well together.

Jon got the opportunity for some extra snuggles. It’s been extra hard with everything that’s going on because Jon has missed out on so much of Judah’s early days…..

The kids played and played and played some more….

And then counted up their tickets that they won. They pooled all the tickets together. Geli and Xandra let Jeremy get something with all their tickets. This was very generous of them.

Josiah found the dancing game and he didn’t even need the game turned on to bust a few moves…

He hasn’t quite grasped the concept of “playing” an actual game…he “thinks” he is playing the game, even with no tokens…

My Sweet Boy…..with the Frankenstein stitches in his head….AWESOME!

We made it back to the hospital in time and Geli got her drugs hooked up. After her drugs ran, she was headed out again to the Teen Group. The oncology department has a monthly teen event for the kids to be able to connect with other kids who are going through what they are going through and it’s been a good thing for Geli. She was unsure if she really wanted to go and was feeling a bit insecure, but she did go and had a GREAT TIME! (They went “glow-in-the-dark bowling and it was so cool!)

The kids and I stayed to hang out with Jon for an extra 2 hours…

We stopped at Safeway to pick up some food for dinner and headed to a nearby park. Judah screamed the whole way there. Just keeping it real for his dad….he HATES his car seat and does this just about every time he’s put in it.

The kids swung on tire swings….

….played on the toys….

……slept……

and Josiah climbed so high on the climbing toys and freaked us right out. That little boy is part Mountain Goat. He managed to scale the toys up and down multiple times without any issue and he was definitely higher than either Jon or I were comfortable with…and then……….. then he tripped over a piece of wood that was laying on the ground….how does that work out???

It started to get colder as the sun went down and I wrapped Judah up like a burrito….only it required two blankets as he’s so big….so I guess it was a REALLY BIG Burrito?!?

Pretty soon it was time to go home and the sadness set in along with the reality that we were going home and Daddy had to stay with Geli.

There were tears and hugs…..

and even kisses….

And we headed home. Our hearts a little fuller from a day spent together. A day that we did not expect to get and yet a day that was a gift. Those stolen moments are so precious and are the things that fuel you and help you to carry on when things seems so difficult and “off”.

You can see all the pics, if you want, here…..

So…….Hey!

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.

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.

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.Â 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.Â I’ve wanted to respond and say “No, really, we’re fine.Â We’re totally okay. We can do this.Â Don’t worry about it.”Â 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.Â What a totally messed up head trip this all is.Â 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.Â Everyone who has given has made a huge impact and again…..I’m so SO Thankful.Â 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.Â 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.Â 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.Â In the 2 weeks before she was hospitalized, she’d been doing REALLY poorly.Â The nausea and vomiting was horrid and she was on 3 different anti-nausea meds and was still barfing.Â 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.Â 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.Â 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.Â Her actual birthday is June 30th.Â That would be 14 days from Geli’s diagnosis, and 4 days from Judah’s birth. It was such an insane time.Â 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.Â 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.Â

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

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.Â My life has some bizarre “time warp thingy” going on right now.Â 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.Â We typically don’t eat dairy and ice cream would definitely fall under the “dairy” category.Â 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.Â 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.

I ran out to the store and boughtÂ 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.Â 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.Â I, then, added a layer of the strawberry and then the layer of vanilla.Â I sprinkled the remainder of the cookie crumble on topÂ of the cake and added gum balls all around the edges.

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

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

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).Â Her next round of chemo was to start when her blood counts were up to the right level and we were aiming for Tuesday.Â 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.Â I called Patti and then called the kids school and got Jeremy and Xandra out.Â Patti picked them up and brought the other two boys in to see us and we actually got one day to see each other.Â ALL SEVEN OF US TOGETHER FOR ONE DAY!!!Â The weather was great and we went to Red Robin, Granville Island and Safeway (Gelica needed some snacky foods).Â 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.Â (they go out every four to six weeks and do some cool activity.)Â They were going glow-in-the-dark bowling and having pizza.Â 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.Â It was so great for her to haveÂ 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,Â 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.Â Once this is in her, she will get another bag of liquid to stop the chemo from going to far and thenÂ a flush that should take most of the active chemo out of her system, and this takes another 2 – 3 days.Â 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.Â Please pray that she flushes the drug quickly.Â Please pray that she has great peace and confidence that things will go wellÂ for her.Â 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.

Brought to You by the Letter B

So, today is my birthday.

I’m 35 years old today. Half way to 70 and really….it doesn’t mean a thing to me. I’m not upset about being old or feeling old or feeling young or anything. Age is pretty much a non-factor to me.

Bitter….

This morning, Xandra and Becca and Brianna brought me coffee in bed. They made six cups of coffee and used 6 scoops of grounds. Needless to say, the coffee was wicked bitter but had some serious kick to it. I was brutally tired, but am quite awake right now.

Breakfast….

Shortly after the coffee arrived, breakfast was brought up. A huge bowl of fruit all sliced up and ready to go. Then they brought a menu up with options for a nice breakfast downstairs…….so so sweet.

Boys……

Just before we headed down stairs for the girls breakfast, I had all of my boys in bed with me. Jon, Jeremy, Josiah and Judah….One day if my girls leave home, I may end up in a house full of men/boys…..I love my boys.

Bananas….

I came downstairs. Sat down at the fancy breakfast table and the girls brought me a banana with 4 candles in it. It was cute and weird and wonderful.

Barfing…

And then Geli woke up and started barfing……

Bawling….

And then she started crying because she is in pain and barfing and doesn’t want to deal with all of this.

Brutal…..

and I’m right there with her…..

This is not how I expected to celebrate (I use the word very, VERY loosely) my birthday. I’m crying too. If I could have one thing for my birthday it would be to have her feel amazing.

And yet, it doesn’t seem to be happening. We don’t know why she’s barfing. Well, we know it has to do with the chemo and other meds that she’s on, but we can’t figure out why the meds she’s on are not helping to keep it under control. I hate seeing her like this. I hate not being able to “fix” it for her. I hate having to push her to eat and trying to distract her from barfing. I hate that we are going through this. I hate that I’m crying. I hate……….. I hate cancer.

Today feels overwhelming…….because it is. And we have no choice…..we can’t just jump off this train, not even for just a moment. We have to carry on. And it’s hard……

And that’s all I’ve got.