Gelica – Page 4 – xangelle.com

Day Two……and a half.

If the rash on Geli’s back and thigh showed up on Sunday night then we are on day 2 and a half of this stupid cycle.

After she was admitted on Monday they started her on an anti-viral mediciation that is used to treat Shingles. Typically if a child gets a virus there is not too much that they can do other than just let the virus run it’s course, but with this particular virus….the one responsible for Chicken Pox….they can give a course of the drug, Acyclovir. Right now she is on an IV medicine, but can switch to an oral med if her body heals up quickly.

Doing Homework after school on Monday

And that is what they’ve done. She in on a 7 day treatment plan and basically they are waiting for the rash to blister up and then start to crust over…..disgusting, eh? But, that is what happens and so that is what we are looking forward to.

The rash started out not too badly on Sunday night and Monday but by Tuesday morning it was worse. One good thing though….the actual “blisters” within the rash were really tiny. It’s pretty nasty looking, but I think that she is starting to get better now. She has not had too much pain. On Sunday night and Monday she said that there was pain where the rash was at about a level 2 out of 10 and that there were times where it would be “shooting pain” and that shooting pain was at about a 4 out of 10. The worst pain was when someone would touch the rash and in order to get a sample to “test” they had to do a scraping….yah and the first sample didn’t have enough to get a good test and so they had to do it a second time. Sucks, eh?

Short Nap in the Stroller

Yesterday she said that it maybe hurt a little bit more, but for the most part it was okay. This morning it doesn’t really hurt at all and when the resident came in to see Geli, she was pleased to see that some of the rash has already started to scab over which is earlier than they would have expected.

He just crashed on Monday night

Thank you so much for your prayers and encouragement and support. It means so much to us.

Here are a few things to pray about….

We’d love to see Geli (and Jon) be healthy enough to come home by the weekend.
We are still praying the little boys don’t get Chicken Pox.
We are hoping that Geli will be able to catch up on all the school work that she’s missing this week without feeling overwhelmed.

So Proud that he climbed up on the stool by himself

As much as this is frustrating, I’m trying to look at the positive side of things. While in the hospital, Geli has been able to have the Physio Therapists come in and look at her and work with her and they will continue to do so every day that she is in and once she leaves, they will be able to be in contact with a Physio Therapist out here and to be able to communicate with them exactly what Geli needs as most of her issues are as a result of the chemotherapy. Some of the drugs actually damage the nerves and it can take some time before the nerves heal. Some of the drugs cause muscle damage and that can also take a while before the toxicity flushes out of her and her muscles are able to recover and rebuild. And on top of that there is muscle atrophy, just from lack of use…..

It actually fits in the garage now! Thanks, Momma!

This is such a tough road to walk out but at least now we have a “sort of” “somewhat” plan moving forward. On top of that Geli was able to hear that all this physical crap is “normal” for someone who has gone through what she’s been through and that it will take her probably 6 months to recover from the damage that the chemo has wreaked on her system. It’s so good to hear that this is all a part of the journey.

I mean, it’s horrifying to go through this and yet there is a certain level of comfort in knowing that this is part of the process. It’s a horrible HORRIBLE process, but she will come through it.

4 Boxes and 2 bags of recycling after the big clean up

And so we carry on. The kids at home are doing okay. I’m doing okay. I’m tired. Even more tired than usual, but possibly less tired than earlier this year and so that’s a good thing.

Monday was a tough day for me and I’m so thankful that my Momma came over and spent the day with me and then she slept over and was around for the morning on Tuesday. She helped me to get my garage cleaned out from all the camping crap that we just “dumped” in our garage in our efforts to unpack the camper at warp speed at 10pm the night we came home.

Signs that your child is a climber.

And now I can actually park our van in there which is a HUGE HELP as we had been parking it out on the road outside our townhouse complex. Now I don’t have to schlepp the diaper bags and kids and other assorted crap out to the van when I want to leave….I can just huck all that stuff in from the comfort our our own garage. YAH!!!

I still want to share about our time away up at the lake and also about Jeremy’s official diagnosis. Lets just say that the last half of the summer was not uneventful.

Down time for me, before bed

Currently, the baby is sleeping and has been sleeping for just over an hour. I am shocked and amazed and and fully expecting him to wake up any minute as he NEVER sleeps this long. Mind you when you half wake up and won’t settle from 11:45pm until 12:20am and then are up again at 2am and at 4 am and at 6am and then up for the day at 7am……you’d think that you might be slightly tired, no???

Well, I’ve got to get going and the battery on my laptop is about dead, so with that….I’m off.

Oh, one more thing…Geli reads the blogs and comments when she’s in the hospital so if you have a quick hello or a cute joke or a funny story, I know that she’d appreciate it. She’s a little bored and she’s not allowed to leave her room unless she wears a mask and heads right outside. They’ve got her in isolation to protect any other kids with compromised immune systems……and isolation….is not as cool as you might think it could be.

Thanks again….YOU ARE AMAZING and WE APPRECIATE YOU!

Not as Planned

Today is not going exactly as planned.

Jon has just taken Angelica into BC Children’s Hospital (as of 9:30am, Monday morning.)

This has left me a bit shocked and I am really praying that Xandra and Jeremy handle the news better than I have. (I’ve already been crying and angry and upset and shocked and so confused and frustrated and really REALLY PISSED!)

Last night around 8pm Angelica came down to the kitchen to show me a rash that was in a stripe and started at the middle of her back and wrapped around hip and down onto her thigh. It was quite angry looking and some of the welts…..well, they weren’t weeping, but they looked close to it….

We called into the hospital and told them that we’d given her benadryl and put some hydrocortisone on the rash and they said that this didn’t sound like a complication of her chemo or the meds she was on and that we’d done the right thing and that was it.

So we sent her to bed.

Things have been a tough recently with Angelica because her body is so fragile and “broken down” from the past year of treatment. Her muscles have atrophied some and she has grown so on top of weaker smaller muscles they are also stretched and she hurts all the time. She walks like an old lady and…..and….well, she hates it all. She hates being in pain. She hates that shes not strong enough to just do “normal” things. And to top it all off….our insurance doesn’t cover her going to see a kinesiologist – which would be a way better treatment for her than Physiotherapy. It’s all so frustrating….

Yesterday we had a huge conversation with her (that involved a lot of tears) about her BELIEVING that she will get better. It has felt like she’s unsure about whether or not she’ll get better and be able to just be normal and strong when it’s been so long that she’s been hurting and feeling sick and weak and unable to just do the things that you and I take for granted.

She finally got to the place where she could say, with some conviction, that she believes that she will get better, get stronger, get healthier……

And then this rash shows up….

And then we have to call the school and have her paged to the office to be picked up…

And when she gets into the car, she has a bag packed for a possible extended hospital stay…

And this is all happening on the first “normal” day of her grade 9 school year….

And this is all happening after she stands and believes that she will get better…..

And this is all happening 2 weeks before we are supposed to leave for Angelica’s “Wish trip”….

And I’m a bit in shock about it all….

I want to believe that it’s going to be nothing and we’ll see them home in a few hours, but I’m scared to hope for the best and to be let down.

Jon and I had planned to spend a “down day” today on his day off. Cleaning up our grarage (which is still loaded with crap from our camping trip) and just spending some much needed time together….and instead we are gearing up for Anti-Viral’s or Antibiotics and Extended Hospital Stays or Who knows…..

Please pray.

Pray that Angelica will he healthy. That the two little boys will not get chicken pox from this. That Jon and Geli will be able to come home. That this won’t affect her Wish Trip. Just please pray!

I can do this…I have to do this. But I really don’t want to.

It sucks.

It sucks for her.
It sucks for me.
It sucks for all of us.

It just sucks!

Beginnings

This fall is really feeling like a new beginning for me this year…for our whole family.

We had the most amazing time away. I’m not gonna lie, a camping trip with our family of seven and then add in a friend…..and it’s not really a “vacation” for the mom but still it was so nice to get away. Away from grouchy neighbors, away from the telephone and internet and electronics of all kind, away from a fast paced lifestyle, away from the housecleaning and so much more…..

We got up and ate breakfast and sat by the fire, then we went swimming. Then we sat around or chased the baby and then went swimming again. Ate lunch, swam some more, read some books, went swimming again. Ate some more and then swam some more….Made and ate dinner, cleaned up from dinner went swimming again, got the kids ready for bed, sat by the fire, watched the stars, went to bed and then started all again the next day.

All in all, it was pretty amazing.

We came home and the “clean up” after camping….well, it was HORRENDOUS and it’s taken us over a week and a lot of nagging on my part and our house is finally livable but the garage….well, let’s just say that we cannot park in there just yet. I’m praying that by this time next week that we’ll be able to park our van in the garage.

In all the clean up, I even rearranged our house back to it’s original place. When Geli got sick last year and Judah was born, I rearranged our house so that I could easily watch the kids in the kitchen while I was nursing. Basically I flipped the living room and dining room. With Jon in the hospital so much, it was just easier for me to be able to see into the kitchen to see what all the monkey’s were doing and that’s not possible when the living room is in it’s normal place.

I was so surprised how changing things back to their original place really made a difference in my mind. It really felt like things were getting back to normal……well, it’s more like redefining life. And even in the middle of this “new beginning”, we are still walking through Angelica’s cancer treatment.

Angelica is still going through chemo.

She has a monthly appointment at the hospital to get a shot of Vincristine and Methotrexate into her spinal fluid.
On Monday’s she takes 13 pills of Methotrexate by mouth.
Once a month she has to take a steroid for five days.
She also has a daily dose of chemo.

She does this until October 2012!

So, although we are in a less intensive phase, she is still actively going through chemotherapy.

Angelica is working towards recovering from this past year. She has definitely lost some muscle and is not as strong as she was before. But she is trying so hard and we are so proud of how hard she is working to overcome all the challenges that she has come up against.

This is going to be a good year. I choose to believe that.

I’m looking forward to see what this year brings.

Tuesday July 18

After a full night of sleep, my alarm woke me up to start getting ready at 7:30am, I got ready in 10 min. then waited another 40 for Mia to get ready so we could go to breakfast, again at EuroPan. Then we all waited in the lobby ’till ’round 9:30am for the bus. And off we were to a country club to swim for the afternoon.

On the way there, we went through a tunnel, and I tried to hold my breath ’til we got out. I didn’t last. When we got out of the tunnel I found out the tunnel went all the way under the Hudson River.

We got to the pool around 10am and right away I jumped in the pool, I was the first one in. I swam for about 2 hours in the deep end, which was 8 to 10 feet deep, with two diving boards.

It was super sunny so when we were called in for lunch I grabbed some food and stayed in the shade talking to some new friends for about an hour.

Then I was back in the pool ’til we had to go, around 3ish in the afternoon.

Back at the hotel we had free time. I went up to the suite and tried to Skype home, but it didn’t work on my computer. I tried to get it to work but it still was wonky when we had to leave for dinner at Carmine’s, an Italian restaurant.

(The bathrooms at Carmine’s had mouthwash in soap dispensers and those little ketchup holder container things that you find in McDonald’s and Wendy’s to put the mouthwash in.)

Then we went to go see the Lion King, which happened to be right across the street.

We walked into the theater, and it was HUGE!! We went to find our seats, which, ’cause of who we were, the Sunshine Kids, we got good seats, we weren’t right up close like some of us kids would have liked, but we were close enough that we could still see the actor’s expressions.

The play was A·MA·ZING(said slowly and emphatically)!!!!!!!! The stage moved up and down and tilted and turned and the costumes were SO cool, and it was just like the animated version, just with people. My favorite of the main characters was Rafiki (though in the animated version it was a guy, and in the Musical that I went to it was a girl), and out of all the other animals were the cheetah, and the giraffes. I liked the giraffes because they stood on stilts and leaned on stilts, so they actually were tall, and I liked the cheetah because it had the best costume, the actor wore a head thingy that moved the cheetah head, and her legs were the cheetah’s back legs, and she stood so that it actually looked like how a cheetah stood and the actress held poles that moved the front legs of the cheetah and if she leaned back the cheetah would, like, stand on her hind legs (I don’t know how else to say that last one.).

After the play was over, we stayed in our chairs until everyone else was gone, then went up to the front and got a meet and greet with the cast. They said to ask them anything, so one of the kids from our Vancouver group asked, “What was the weirdest question you’ve ever gotten asked?” And the actress that played the cheetah answered that she once got asked what her favorite type of pasta was.

Then we got a tour of backstage, and the changing rooms, and we got to see where they kept all the costumes when they weren’t using them (most of them were kept up above everything, and out of the way).

And then we all got together and got group photos of us Sunshine Kids and the actors that were still there.

After everything was finished we headed back to the hotel and were told to go straight to our rooms and that we should get ready to go to sleep. I was so tired that I basically put on my pjs, brushed my teeth and got in bed and I don’t even remember laying down before I fell asleep.

And I still had water in my ear.

To see all of the Tuesday Photos click here….

Ambleside

Last Tuesday we woke up and it was just another day.

This summer has been a bit of a bummer. It has not gone exactly how we had planned or expected and while nothing terrible has happened, it’s not been as relaxing as I’d hoped!

Around 9:30am, I decided that if the kids and I could get the house cleaned and packed and ready to go by 11:30am – that we’d head out to the beach. At this point, I still wasn’t sure which beach I would head to as they are all about an hour away from us, but I was determined that we were not going to just sit at home and do nothing for one more day.

The kids were pretty excited and we managed to get everything ready and done just after 11:30am and so off we went.

As I pulled out of the driveway, I was still unsure about where we should go…I was contemplating 3 different beaches…White Rock, Spanish Banks and Ambleside.

In the end, Ambleside in West Vancouver won out mostly because I could park and be on the sand in about 20 steps and with 5 kids in tow and all our gear – the close proximity to the beach, the parking spot and the bathroom were key factors in my decision.

Traffic was NON-EXISTANT and we made it there in just under and hour. The weather was not AMAZING, but neither did it suck. It was one of those days, where it was cloudy, but there was still the possibility of getting a burn if you didn’t take the right precautions.

As soon as we hit the sand, the boys were gone, headed straight for the water. Jeremy stopped long enough to point out a good spot that he figured I should put the blankets down on and I agreed, it was a pretty good spot.

We laid the blankets out and put the baby on them and he instantly crawled the edge of the blanket and picked up handfuls of sand and hucked them ALL OVER THE BLANKETS! At that point, I moved him over into the middle of one of the blankets and then took possession of that blanket. The girls shook all the sand off the other blanket and ATTEMPTED to keep it sand-free…….between the baby and the 3 year, it was a losing battle. I didn’t even try to stop him from loading up my blanket and to be honest, I just didn’t care.

The kids played and played and played and played.

The weather was perfect….warm enough that you could just wear a tank top, but cool and cloudy enough to keep just about everyone else from coming to the beach.

The kids tried to go in the water and the girls went in past their waists…..crazy kids. Josiah went in but decided that he didn’t want to go in, but then fell in and so that was that.

He came up and got a towel from me but from that point on, he was a sandy mess….it was…..AWESOME! sort of….

The kids were playing so nicely together and except for the occasional squabble between Jeremy and Josiah, it was the best couple of hours that we’ve had in a while.

I was able to just sit and then every once in a while retrieve Judah and bring him back to the blanket….and then he’d start crawling back towards the water again stopping every now and then to pick up some random object and put it in his mouth.

The kids splashed in the water, made a sand wall, dug a hole, buried Jeremy, and played on the playground. We ate lunch and had snacks and went to the bathroom and the only mildly upsetting time was when we lost Josiah for about 90 seconds. He had come back with me (from the bathroom) and was right behind me. I guess, when we walked over the cement wall and onto the beach, he stayed on the wall and walked back along it towards the bathroom. I made it back to the blanket (which was about 10 feet away) and sat down. Talk to the girls about how the baby was when I was gone, turned around and Siah was gone…..Xani and I ran around like chickens with our heads cut off and fortunately, the lady next to us spotted him on the wall back by the bathrooms…..I had a short little chat with him and after that, he stayed pretty close.

The biggest downside to the day was when Jeremy decided to not feel well about an hour before we had planned to come home. He was complaining of a headache and an upset tummy and stopped playing, wrapped his head in a towel and lay down on the blanket. Then he wanted to go and sit in the van and was moaning loudly about needing to barf.

After that, We packed up pretty quickly and headed home….unfortunately, the traffic was just starting and we had about an hour and a half drive from West Vancouver back to Langley. FORTUNATELY, Jeremy slept the whole way home and that seemed to help a little. He never did end up barfing (Thank God!) and by the next day he was 100%, so who knows what his issue was????

It was an awesome day and we will definitely be headed back there before the summer is over.

If you’re interested, you can see all of my photos from our Ambleside Adventure by clicking here!

On a New York Monday….

We woke up at 7:30am and went next door to EuroPan for breakfast. I didn’t sleep too good the night before. My foot felt okay, but still hurt from all of the walking and standing that I had to do at the airport the day before.

This is me trying to get a photo while we were driving past….and that’s why it’s only half a picture

We met in the lobby of the hotel around 8 o’clock, piled onto the bus and headed out to the Empire State Building.

We got our own buses for everywhere we went. The Empire State Building has 102 floors total. We just went up the 86th Floor Observatory.

We looked around the Observatory and then went back inside and went down to the 80th floor where the gift shop is. I picked up some souvenirs there for my family. Then we went to the Skyride which is basically a moving chair and a movie but makes you think you are looking out of a helicopter. You see all the different tourist attractions around New York. They still include the Twin Towers because they were a part of New York and they don’t want them to be forgotten.

Taken from the 86th floor Observatory

We went back to the main floor, piled back on the bus and went to Mickey’s Mantle which is a restaurant owned by a guy who likes baseball. There we were fed what I like to think of as a family style buffet, where they brought a bunch of food out in large quantities.

After that we were gonna go for a carriage ride, but it ended up getting too hot for the horses. So instead we went back to the hotel (our rooms were on either of two floors, 37 and 39, and there was a suite on floor 42 that was kinda like a common room area where there were TVs and board games and cards and couches and we could use our computers I later found out.) At first I went to my room and read while I iced me ankle, but then I got bored and went to the suite, where I played cheat, and won, then Scrabble, and won by like at least double everyone else. Then we had to clean up fast and head back to the lobby to go to a Chinese restaurant that I din’t catch the name of.

An interesting thing I saw when I was there was; there are McDonald’s EVERYWHERE!!! Like one on every block.

There were some pretty interesting signs in New York!

At the Chinese place we had another family style buffet type meal, then walked a block or two down the street to the Blue Man Group.

It was so AMAZING!!!

OK, so a few years ago in Abbotsford, in Elementary school, there was a group of guys that came to our school, they had all these tubes and bicycle wheels and tons of stuff that you’d find in a junk yard. And they’d found a way to use these things to make music. The Blue Man Group was like that only like 100 times better, and they found a way to add colour and to make it look kind of techno and add, like, a mime-ness to it, the Blue Men didn’t talk or make noise themselves, they used the tubes and pipes and things. They got the audience to go up, and they gave out paintings that they made right then, and near the end they had rolls of toilet paper attached to the roof and they got the audience to throw it foreword so it looked like really really long streamers while they used strobe lights, it looked SO SO SO COOL!!!!!

When the show was over we got pictures with the Blue Men, and I bought a t-shirt and a Blue Man CD to take home.

Then we went back to the hotel where we had to go straight to our rooms, it was like, 11pm, and get ready for bed. Me and my roommate, Mia, watched some TV, and ended up actually going to sleep around 1/4 to 1, and that was my first day at New York.

To see the rest of the pictures from Monday, click here!

New York – Day 1

Angelica had to get up SUPER EARLY on Sunday morning because she had to BE at the airport at 5:30am. This meant that she needed to leave our house around 4:30am….which means that she had to wake up even earlier.

Jon and Geli managed to get off for the airport on time and they met up with the rest of her group.

After a hug and a kiss, she was off…

They landed in New York on Sunday evening…..

Airports always have neat art or sculptures in them don’t they?

Angelica came home telling us about the amazing vending machines that she saw and it seemed quite fantastical until she showed us this photo of a vending machine full of ipods and cameras and games and accessories…..is that not just insane!

Of course you’ve got to take a photo of the New York Taxi’s…..

They got into their hotel and got settled and after a LONG day of traveling they settled down for the night because the next day would start a WHIRLWIND of activities that would tire any of us….

The view of the sunset from Geli’s Hotel Room.

We’ve decided to break each day up into it’s own adventure and story and so come and check back in to hear more about Geli’s adventure…..

To see all of the pictures from Sunday July 17th – click here!

Home

My baby is home!

We picked her up at the airport last night at 5:30pm. It was SO WONDERFUL to see her and she looks AMAZING!

Her skin is sun kissed which is such a fabulous comparison to the pale greenish hue that her skin has carried around for the past year.

She had an amazing time and took 400 pictures to remember it all. I’ll get a few of her favorite pictures up soon.

It’s currently 10am and my teenager is still sleeping. Considering that New York is 3 hours ahead of us, it would be 1pm over there and so I’d say that her week away has tired her out. But its a good tired….

I was so glad that she was able to go and even happier that she’s home!

New York Adventures

We finally heard from Angelica.

After dropping her off at 5:30am on Sunday morning, we didn’t hear from her again until Tuesday afternoon. That’s a looooong time to be away from someone that you’ve worried over and “mother hen’d” for over a year.

And……she was fine. Obviously!

Jon and I…..not so much!

I mean, we are okay and in all reality, too busy to be worrying 24/7 but there are definitely the odd moments that get ya.

She called on Tuesday afternoon just to let us know that everything was okay and that she was having SO MUCH FUN. I asked the usual “How are you doing? How are you feeling? Everything okay?” questions and then reminded her to take a million pictures and she assured me she was and then we hung up.

It was just a quick short conversation and so we were DELIGHTED when she e-mailed us on Wednesday. It wasn’t a long e-mail, but enough to connect AND THEN…..

Wednesday afternoon she emailed a HUGE LONG RAMBLING e-mail. It was wonderful.

So far, they have seen or done…..
– Mme. Tussaudes (the wax museum)
– Empire State Building
– The Blue Man Group
– Lion King (the musical) and got to go back stage
– Battery Park
– Statue of LIberty
– a Private Pool Party

And they still have today and tomorrow.

She mentioned that it is SO HOT! She wore her hoody one day and said that it feels like you are being smothered with a heavy blanket. She is also LOVING the restaurants that the are eating at, but she also mentioned that she is missing her fruits and veggies….apparently you can eat too much junk food!

I’m so glad that she has had this opportunity. It is such a blessing. I can’t wait to see all her pictures and to hear all about her many adventures.

Starting the Next Phase

And so it starts, as of tomorrow morning Angelica starts Maintenence.

We got her bloodwork done on Saturday morning and we waited and waited and waited for what seems like FOREVER! Finally one o’clock rolled around and we called the lab for her numbers and……..they weren’t ready! Talk about frustrating!

We were told to call back at 2:00pm and so we waited another whole hour and finally her numbers were ready.

White blood count. 2.8
Hemoglobin 106
Platelets 228
And the magic numbers……..

Her neutrophil was at a .8

In order to start the Maintenance, she needed to score a neutrophil count of at least a .75 and on Friday she was at a .5 and there was talk of her counts not being Hugh enough to start on Monday.

But she did it. Her body has managed to rebound and to finally fight off that stinking virus that has been plaguing her for the past few weeks.

So she heads in bright and early on Monday morning for an 8:00am appointment for a lumbar puncture with chemotherapy being injected into her spinal fluid. Then she has her monthly dose of Vincristine and she will come home with prednisone and 6-Mercaptopurine. She takes the 6-MP every day for the next year and a half. The Prednisone is taken 5 days out of every month.

So while this next phase is less intensive than the past year, we are not finished whith this whole ordeal by any means.

But, looking towards the positive side of things……her immune system will be functioning at a more consistentantly high level than it has been over the past year, and she will be less ” impacted” by the chemotherapy. Her hair will grow out and she will have less trips into the hospital.

Our lives should settle down as we adjust into a new chemotherapy schedule and how it impacts our family. We are really looking forward to a bit of a slower pace.

The most pressing thing currently is that apparently all of our walking that we’ve done has resulted in some trauma to Geli’s heel. It looks like it might be tendinitis of her achilles tendon. Its causing her quite a bit of discomfort and we need her to heal before her heads off to New York next week!

So if you all wouldn’t mind sending up a prayer for her heel, that would be much appreciated.