Quick Hello

I’m feeling a bit……..a bit lost these days.

I’m tired. I’ve got so much to do. I desperately need to get some of my thoughts out of my head and out into words and yet….I haven’t the time.

Jon’s just getting the first order ready to send in to the T-Shirt place. Angelica has sold 9 t-shirts and we are so SO thankful to all of you who are supporting her in this way. She is so excited to be making some money on her own.

We are looking to put up another shirt with the design as more of a logo – we’ve had a few suggestions that guys might like that one better and she also has 2/3 more options that we just need to make digital.

The biggest issue is finding the time. GAH! I hate time….really I hate the lack of time!

Angelica is doing okay. She’s managed to stay healthy so far and we are really praying that she continues until her counts come up. She goes in tomorrow for her last chemo appointment of this intense phase of treatment and then as soon as her counts come up……SHE STARTS MAINTENANCE! YAH!

She’s pretty tired and having a tiny bit of a hard time sleeping. We are wondering if she needs to be a little bit more active in the day, but when you are feeling pretty punk, it’s kind of hard to be thinking about exercise.

We are just really looking forward to her body re-adjusting and settling down and for her to be able to readjust to her “new normal”.

If you’ve sent me an e-mail and I’ve not responded or if you’ve messaged me on facebook or if I was supposed to call you back or get in touch with you or you just really wonder why I’ve not been in contact with you……please have grace for me.

I’m feeling quite pressured these days and feel so guilty that I’m not on top of EVERYTHING and yet, it’s just not possible for me to do everything that I’d like to right now.

I had a mom message me the other day and I almost broke down. Her daughter had leukemia and is done maintenance and is doing amazingly well. But, she asked how I was doing and mentioned that so often people don’t realize how long the whole treatment process is. I recognize that you reading are somewhat aware because I write about parts of it, but there is such a sense of loneliness and exhaustion and this whole “leukemia/cancer” thing is crazy intense. It’s so FREAKING LONG and there are so many times when you feel like you have no more to give and you must just carry on.

And now….I must go….Jon’s waiting on me! We’ve got to pick up passports, send in the Make a Wish Forms, Place the t-shirt orders, go grocery shopping and clean the house….it’s a busy, busy day.

Hope you are having a good one.

Happy Anniversary… sort of…

On June 16th, 2010, we received a call from our family Doctor that started the most difficult year our family has ever had to deal with. We spent that night in the Emergency Room at BC Children’s Hospital getting asked a million question and getting poked and prodded and at about 1:00am on June 17th an Oncology Resident came into our room and stated that initial blood screen results indicated that Angelica was fighting Leukemia. We were admitted to the hospital, tried to get a few hours of sleep and…

On June 17th, 2010, after a bone marrow biopsy, the diagnosis was confirmed as Acute Lymphoblastic Leukemia – B Cell (with a few other specific gene type annotations). This became Day 0 and a whirlwind of activity began that changed the course of our lives.



June 17, 2010
June 17, 2010

Tomorrow is June 17th, 2011. One year since all this began and Angelica is still in active treatment. Her counts are very low, so we have an appointment tomorrow to get some blood transfusions. It will take all day in at BC Children’s, and we would like to celebrate.

We are not looking to celebrate a year of leukemia treatment… that is just morbid. We do want to celebrate a year of life, a year of triumph and a year of community coming together. As her counts are so low, and she is not really allowed to be around groups of people, we can’t go and throw a big BBQ in the back yard, but we can celebrate in other ways. I would like to ask you to send in a comment at the bottom of this post or e-mail (to: patti@xangelle.com) and share “something” with Angelica. You may have a moment in this journey that really sticks out to you. You may have a way that this journey has impacted your life. You may just be able to say, “I am still standing with you”. But please take a moment to share something. I would like to be able to share your encouraging thoughts and comments with her all during the day tomorrow at the hospital.

Also, please have a look at the shirts that Angelica is selling (button on the right) and buy one or pass the link along to friends and family. And if you are not interested in using the paypal shopping cart, or wish to pay in cash, please just contact us and we will set it up. We will be placing our first order with the shirt printer on Monday.

Jon

New York, T-Shirts and Spending Cash

The Sunshine Kids take several trips per year with kids that are dealing with cancer. Angelica has been chosen to go to New York for the “Summer Broadway Break”, July 17-23 this year.

SHE IS SOOOO EXCITED

Everything is covered for the trip (transportation, food, lodging, admissions, etc) and the kids are treated like royalty. The kids only need to bring their own spending cash for shopping in Times Square and the like.

So, Angelica is looking for ways to raise some money for that spending cash, and seeing as the traditional methods like babysitting are out for her (with her low counts) Angelica has been thinking about putting some of her artistic abilities to work. She’s thrown around the idea of designing t-shirts a few times over the years and so we decided to try to make this happen. Here is the first design…

Confidence

(depending on interest, she has a lot more ideas)

the t-shirts are available in three styles and two colours each, and there is a hoody. Here they are:

Shirt Style Sizing Chart

straight cut in white with black image or charcoal with silver image
Click for larger image

Ladies cut in white with black image or dark heather with silver image
Click for larger image

Youth fitted cut in white with black image or charcoal with silver image
Click for larger image

Hoody in white with black image or dark heather with silver image
Click for larger image

Click Here to order

Please note that we are not starting with inventory, and so we will be compiling the first weeks orders, then getting them printed, then shipping. Please allow 3 weeks for delivery (5 weeks for international). Also, please let us know if there are any issues with the PayPal shopping cart.

No Clue What We Were Up Against

Sometimes it’s easy to post and sometimes it’s really difficult.

I’ve been finding it quite difficult recently. There are things I want to say, thoughts that I want to share and yet when I go to unravel the mess inside my brain….it’s more difficult than I thought it would be.

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Xandra just got back from 3 days away at Camp Jubilee as part of her Grade Seven Grad Trip.

She was so excited to go and while I was thrilled for her, there was a part of me that felt unsettled and uneasy.

She spent about 3 days before the trip packing and preparing and it reminded me so much of last year when we were doing the exact same thing for Geli.

The difference was that Angelica was not feeling one hundred percent.

Obviously, there is a good reason for that now, but back then, we didn’t know. We had no clue what we were up against. I was so pregnant and so looking forward to having Judah. Geli’s complaints of feeling tired were easily explained away by the fact that she was a teenager, and the rash that she had on her legs was probably from some reaction to soap or most likely a virus.

We sent her off to the Camp and when she got home…she was obviously quite ill. Sick enough (and I was pregnant enough) that a trip to the Dr. was very important. I am so thankful that we didn’t wait longer. I’m not one to take my kids to the Dr for every cough or sore throat and there is a good chance that were I not going to have a baby any day and the fact that if it might be Strep Throat….I didn’t want to deal with a highly contagious illness with a newborn in the house…..that we would have waited even longer to take her in. I don’t even let myself think about how much worse she would have/could have gotten had we not gone in to see our family Dr and gotten blood work.

We had no clue what we were up against.

Xandra made it off to the camping trip and I have spent the last few days alternating between worrying and telling myself not to worry. Xandra is well. Xandra is healthy. Xandra is amazing! Yes, this has been a tough year on her (as it’s been on all of us) but we are making our way through this….through the good times and the bad times. We will survive. We will overcome this.

She came home today and we drove to the school to pick her up. As we drove up to the front of the school, every muscle in my body was tense and I kept looking…searching for some sign that she might not be feeling well. I waited until she opened the van door, praying that I wouldn’t hear the scratchy voice of a cough or the nasal voice of a stuffed nose……and at the same time, I’d already prepped myself that she’d been in close contact with a whole bunch of other kids, who had ingested a ton of crap food with very little sleep…..an illness would not be out of the ordinary.

Her eyes looked bright and cheerful. Her skin was sun kissed and bight. She had a skip in her step and a song in her voice as she greeted us and the breath that I’d been holding so very tight let out…….a little.

It’s a hard thing to deal with; having your child be diagnosed with a life threatening illness and then trying to carry on with life. It s not an easy thing and too many times I’ve had nightmares of something horrible happening my other children. Too many times I’ve worried or stressed about things that have never come to pass.

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So much of this journey is “too much”…..I know that I have a lot to “heal” from. There are times where I’ve felt traumatized by what has happened and yet I carry on. I must! But the effects of what we’ve been though have left their mark and I’m not yet in a position of strength.

I will be. Every day, I grow stronger and some days I feel like I’ve healed….and then something like these past few days happens and I see that I’m not quite there yet.

It will come. I believe. It must!

Two to Go & an Invitation

Angelica headed in for her last dose of Ara-C today.

Her counts have dropped BUT they have NOT dropped as low as we thought they would have but she still has all of next week, which is when the full effect from this week kicks in. But for now, she is doing okay!

Her spirits are high and overall she is feeling pretty good. I can tell that the chemo has hit her a bit as her appetite is off slightly. She is still eating, but not with the same “enjoyment and appreciation” that she normally has. I am still after her to drink water. It’s important to stay hydrated and to flush out the chemo and while it’s annoying for her to plow through 2 or 3 litres in a day, I think that it’s helped a lot.

I already told her that I am not even going to be on her case a bit as far as eating is concerned because we are only just trying to get through the next two weeks and then things change up a bit for her….for us….for our entire family.

Angelica does have two more “clinic days”……

– Tuesday June 14th for a dose of Vincristine and the hated intra-muscular PEG shots
– Tuesday June 21st for a dose of Vincristine

After that, if her counts rebound, then Geli should “START” Maintenence on Tuesday June 28th…..if they’ve not recovered in time then we put that start date off by a week and start on Tuesday July 5th. Either way, the end is coming……YAH!!!!!!

I do have a favor to ask of you.

Angelica was officially diagnosed with Leukemia on June 17th and started Chemo on June the 18th.

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She’s has gone from this very sick little girl…..

I was wondering if you’d be interested in joining us in celebrating Angelica, her life and this journey over the past year.

I know that she’d love to hear from all of those people who have followed along with this journey. Whether you read regularly, or only occasionally. Whether you know her, or us; personally, or only through friends or family, or only through this blog…. I’d love to have as many as possible leave a message for her. I’d love to just overwhelm her with a HUGE SHOW of love and support and encouragement as she heads in to the last week of this intensive phase of treatment.

It could be an encouraging word, or a memory, a time in all of this craziness that stood out for you, or when you really connected with her story. It could just be a “hello, just wanted to let you know that I’ve been cheering for you from the sidelines” kind of thing or even a “Hey, you look pretty good bald!”.

As of Friday June 17th, it’s been a year. It’s been a LONG year and as opposed to looking back at this year as being a horrible and terrible thing, I’d rather celebrate it as A YEAR OF LIFE.

Angelica Culley

…..to this vibrant young woman

We have been given a year of life with our daughter and we are so thankful for that. Sure, there are times during this year that I’d be happy to have not gone through, but she is here, with us, healthy and alive. I’m thankful!

I just wanted to give you the time to think about this and to ask…

Would you please join us
as we celebrate
A YEAR OF LIFE
on
Friday June 17th

Which is your favorite?

On Tuesday, I briefly mentioned that we had Family Photos done a few weeks ago and that you could go and see a few of them if you went over to the Red Handed Photography Blog.

Tania had posted a bunch of pictures of the kids. On Wednesday, she posted a few of Jon and I together. And today she posted a bunch of our entire family.

I am SO thrilled with these photos. I love to be able to capture my family in pictures. I love to be able to catch moments or scenes from the different points in our lives. Some of those times are amazing and some are a bit tougher, but all those pictures go together to tell a story! Our Story!

As many pictures as I am able to take of the kids, or even of Jon….I am never able to get pictures of Jon and I together and none of our entire family. For Cara to volunteer her winning photo package to us as a family and for Tania to take the photos……I am so SO blessed.

This is such a gift. SUCH A HUGE GIFT to us. I am so thrilled to have photo’s from this time in our lives.

To see pictures of the kids, of Jon and I, and of our family all together, please go and visit Tania’s website.

Red Handed Photography

And if you are thinking about getting pictures taken, I would strongly encourage you to contact Tania. She is fantastic. The shoot was so easy and comfortable. Her ability to deal with all 7 of us and to not get stressed or upset, was amazing. She made this entire process so fabulous!

I’d love it if you would check them out and let me know which one(s) are your favorite?

I love this goofy shot of the kids……

Exhaustion and Low Counts

I’m tired.

I’ve started exercising again and while I know in my head, that in just a very short time, I will have more energy….at this exact moment I’m SO tired!

My legs hurt. My stomach hurts. My shoulders hurt. Stupid muscles in my neck that i didn’t even know that I had hurt! I hurt!

I know that the end result will be a definite gain in my life, but for the immediate…I’m tired!

Other than that, I’m doing well…..so enough about me.

Angelica has done 2 out of the 4 doses of chemo for this week. She went in yesterday and based on how well she seemed on Monday with her friends, we were expecting a short in and out. She had an LP and after that she needs to lay down for about a hour, but they could give her the chemo and so while her appointment was for 8:30am, I expected them home before noon.

The whole morning just kind of went screwy. The traffic was BRUTAL and it took them over an hour and a half to get in. Then is took a bit for her to get in for the LP. While she was sleeping off the sedative, Jon got the results of the blood work and her Hemoglobin was at a 72. This was a fair drop from the 95 that it was on Friday. Typically around a 70, Geli has higher blood pressure, a faster heart rate, feels like she just cannot catch her breath, has a hard time moving around and definitely has trouble going up or down stairs. Aside from her heart rate being slightly elevated, she was doing fine, but….seeing as her counts are just heading down, down, DOWN…. They ordered a transfusion and there began one of the LONG clinic days. The blood didn’t even get to the clinic until after 1pm and they didn’t get her hooked up until 1:30pm. It takes about 3 hours for the blood to run and so they didn’t even leave the clinic until 5:30pm and then there was the hours drive home.

If we are prepared for a long day it’s less stressful than when we are kind of blindsided with it.

All of her counts are headed south. There is a good chance that she will have low to NO infection fighting ability for most of the next 3 weeks. This is a bit scarey and I’m asking for prayer to really cover Geli and us during this time.

Obviously, we can handle anything that we have to…including a long hospital stay, but we don’t want to have to.

We’d just like for Angelica to stay healthy and strong.

There is a good chance that she’ll need another transfusion either Friday or Tuesday and she’ll most definitely need platelets before she gets the intramuscular shots on Tuesday. It looks like we’re in for a few long clinic days over the next little while.

We’re looking at the finish end and just needing the strength to stay strong until this “intensive” phase of treatment is over.

Strawberry Shakes and Pictures

Angelica’s counts came back too low and she’s scored herself some blood. So, her and Jon are in for a LONG and boring day at the hospital today.

I have more to update on how Geli is doing and what’s up in our world, but time is tight right now…so, I’ll just send you over to RED HANDED PHOTOGRAPHY to see the Family Photo‘s that Tania took of us a few weeks ago.

They are AMAZING!

Tania, BABE!!!!! THANK YOU SO MUCH!

We are so blessed to have such amazing people in our lives.

Tinkering

We’re working on shaking things up a bit. Making things look a bit newer, a bit fresher….a bit……well, a bit something?!?

It’s kind of a work in process because we don’t have a massive chunk of time to work it all out at once, but keep watching and little by little we’ll get it all sorted out.

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Siah went camping with my parents this past week and had SO MANY grand adventures. He came home excitedly telling me about the horse he rode and then got bucked off…..

Here is my mighty cowboy.

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I’m looking forward to sharing some of his other stories with you! Maybe I can even convince him to share some of them with you…..we’ll see!

Hope you have a great and relaxing Sunday! Today we are celebrating Max’s Birth! Angelica is doing the decorating! She loves to organize and plan parties!

Family, Babies, Sunshine and Cake….what could be better?