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.

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

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

Unexpected Blessings

Back in June/July of last year, just shortly after Angelica was diagnosed with Leukemia, my Aunt, Uncle and Cousins got together and bought Geli an iPod Touch.

It was the most amazing blessing EVER! (to those reading this….it’s not that your gifts weren’t amazing too, I just happen to be mentioning this particular gift for a particular reason that you will soon see.)

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Angelica spent hours, and Hours and HOURS on her iPod. Playing games, and listening to music and watching movies and looking things up and well, it provided some amazing distractions at times when distractions were so SO needed. She never went ANYWHERE without her iPod.

One day a few weeks ago, Angelica went to school and had her iPod tucked into the outside pocket of her backpack. Somehow, someway, her iPod got stolen out of her backpack. She was SO upset. Its upsetting when the innocence and naivety of your world is stripped away and you realize that the world is not the safe place that you might have thought it was. To have something of yours stolen from you……it’s a rude awakening into reality! It’s even more upsetting when that “item” has memories and key events in your life, attached to it.

We asked if there was any way possible for the school to make an announcement about her iPod being stolen. Geli checked in at the office a few times, but no one had turned anything in!

We got a call two weeks ago from one of the teachers who mentioned that the WGSS Grads were fundraising to get Angelica a new iPod.

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We were shocked, in a good way! Once again, we are so touched and amazed at how this community has rallied around us and supported us and loved us…..it’s overwhelming, in such a very, very good way!

I got the call last week that they had the funds in and were able to purchase a brand new iPod for her. This is even an upgrade from the amazing iPod that my family had already got for her. This new one has some new features that her previous iPod didn’t have, like a camera and the ability to Facetime.

On Friday, while she was at school, the principal came down to her Math class and got her out of class and took her down to the English 12 class. We hadn’t told her about what was happening and so it was a surprise for her.

She was BLOWN away! After they presented it to her, she texted me to let me know what had just happened. I had cried when the teacher had called to let me know and I cried again when she texted me and I’m crying now, just thinking about it. She was so SO excited. It was such a HUGE blessing for her. She had basically resigned herself to the fact that her iPod was gone forever. We don’t have the ability to replace it right now and so………….well, that was just the end of it!

The class presented it to her, and they even had it engraved for her. How amazing is that?

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In the middle of this crazy, horrid weekend of pain, this blessing could not have come at a more opportune time. In the better moments, she has loaded the iPod with all of her previous apps and music and added new movies and music to it. She’s been able to watch movies while pacing the house or laying in bed or on the couch. She’s been playing games to distract herself and quite honestly, it has been the perfect gift that came at the perfect time.

Thank You! Thank you for giving, for sacrificing, for caring for and supporting!

WGSS Grads of 2011, you have made a HUGE difference in this young lady’s life. She (and we) will never forget you or your kindness. You have given from yourselves and invested in the future. You should be SO proud of yourselves. I am so thankful to you. May your futures be bright and full of hope, peace, joy and love; and may you be abundantly blessed in such greater measures than you’ve given out.

My Heart is So Very Full

2010 was a rough year and I think that’s putting it mildly.

We had some amazing ups and some really horrific downs. I could try to just focus on the positive things, but some of those positive things would not have happened without the negative things happening first and so it’s all one giant messy tangle of good and bad.

As I (and we as a family) start off this new year and I look back at all that 2010 was…one thing stands out in my mind.

I’m SO THANKFUL.

We would not be in the position that we are without you. You have made these past 6 months bearable. Were it not for you, I’m not sure what kind of shape I’d be in right now.

I’m starting out the New Year closer to a position of strength than I ever thought possible. What do I mean by that???

Well, I have felt so beaten up and bruised and shattered for most of the past 6 months. I think that the shock of Geli being diagnosed with cancer combined with the birth of Judah and our family being thrown into chaos and separated for so often and so long, combined with the stress of Geli being SO sick, while dealing with all the other kids needs and a newborn, along with a Judah’s digestive issues……well, the stress of everything has seemed so overwhelming and I have been really struggling in the last half of this past year.

Because of Angelica’s health, our family has been quite secluded and there have been times that I’ve “felt” so alone. Most of the time I’ve been way to busy just trying to stay on top of the family and house and I’ve not had time to really feel alone, but there are definitely moments….moments when the walls of my house feel way too close and I desperately need to escape and so I…..run to the grocery store to pick something up. That’s so exciting, isn’t it? I’ve not had the energy to actually “go out” or even to just go and sit at a coffee shop. I’ve been too tired to “do” anything and my 15 minutes of grocery shopping about does me in for the evening. I’ve gone to bed at 8:30-9pm more nights than I’ve been awake past then and while I know that dealing with cancer, a newborn and a family of 7 is a fair amount to accomplish in a day….I still end up going to bed feeling so unproductive and unaccomplished.

And this………this is where you all come in.

It’s been rough and I’ve felt overwhelmed and yet……..there you are.

You have given meals. You’ve sent cards and e-mails and letters. You’ve left messages. You’ve brought groceries. You’ve given gift cards. You’ve helped to clean my house. You’ve taken the kids. You’ve brought food and groceries. You’ve left comments. You’ve given financially. You’ve given gifts to my children. You’ve sent notes and cards and postcards to the children. You’ve lifted our spirits. You’ve helped to carry us along when we were too tired to take another step. You’ve come and taken me grocery shopping when I didn’t think I could go. You came and spent New Years Day with us and made it wonderful and made me cry because I thought we were going to be alone and you made it so special. You’ve taken my kids for sleepovers and out for treats. You’ve co-ordinated help and meals for us. You’ve donated your tips to us. You’ve shaved your hair to raise money for us. You’ve prayed for us. You’ve made birthday’s special. You helped us to have an amazing mini-vacation, one that my kids still talk about (even yesterday it was mentioned). You’ve continued to leave comments just to let us know that you are there and are thinking about us….even if I’ve not posted recently. You’ve folded laundry & washed bathrooms and floors. You’ve kept the church running so that we were free to be with our family. You are amazing. There is so much more I’ve not listed here.

This Christmas we were blown away.

We were overwhelmed with love and support. I’ve said that before, but it was so true. I’m so hesitant to start mentioning names or groups because I know that once I start, for sure I will miss some people out and I don’t believe that any gift is unimportant.

I think that we are like a body. Every single part is important. Even something seemingly insignificant as a fingernail…..is important. You really notice how important your fingernail or toenail is when it’s ripped off, don’t you? I’m not saying that you’re a toenail, but that no part is too small or insignificant. No gift has been too small or insignificant. Every single one of you is so important and you have played out YOUR ROLE in our life exquisitely.

We felt waves and waves and waves of love washing over us this holiday season. We felt completely flooded and even overwhelmed with love and support. I sat on the floor one night and just cried because it was so overwhelming, in a good way. As I sat there, it was like a movie played in my mind and all the good things from this past year scrolled through and I was so grateful.

I’m not alone.

I’M NOT ALONE!

That night, those words rang out over and over and over inside my brain. They started as a whisper and grew louder and louder and louder until it was all I could hear. I’M NOT ALONE. I’m so sorry if I’ve not mentioned it before or if I’ve felt so overwhelmed by the negative things in my life that I just couldn’t see it but I’M NOT ALONE!

You’ve been here with me. You are supporting us. You are loving us. You have been here to help us. You are carrying us. You are amazing and I (and we as a family) are not alone.

My heart is so very, very full. Full of thankfulness, full of love, full of the knowledge that we are not alone.

This is an amazing start to 2011 and I am so thankful that you are here sharing it with me.

May your year be full of love and joy and peace and health, & family and friends.

New Years Eve Update

Judah wanted to wish you all a Happy New Years Eve Day…..

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This year has been so full of both good and bad: and while we are SO ready to move beyond the bad….we are so thankful for the good. And, really, that’s life, isn’t it? You must take the good with the bad and move forward. Having said that, we are really looking forward to a New Year. And we are expecting GOOD THINGS, in this New Year. We are looking forward to what 2011 has in store for us as a family and as individuals. Are you?

I thought we could end the year with an update on how Geli and the family are doing and then I will start the New Year on a whole different note.

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This is a picture of Angelica on December 23rd. She is just trying to finish up one aspect of her sibling/cousin presents that she left until last minute, but I’m just excited that she was able to make her own gifts this year. Can you see her hair? At this point, she had some hair that was about 2-3 inches long. That was the hair that didn’t fall out at the beginning of the treatment. It was pretty sparse, but it was fairly long (for her) and it’s been growing since the head shaving party in July. The really exciting part was that under that sparse layer of hair there is a WHOLE TON of hair about 1 inch long that is coming in under all the long sparse stuff. It seemed like overnight she went from really thin hair to POOF….this whole “under” layer of hair that filled in all the holes. It was pretty cool. The not cool part…..she just went through a round of Chemo that is expected to make the hair fall out again.

We figured that seeing as her hair was expected to fall out within the next little bit, we might as well have some fun with it while it lasted.

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She chose a color that she’s used before. It’s a very cool Dark Blue/Black color. To look straight at her, it looks black; but when the light hits her the right way, it’s VERY blue.

You can see some of the blue-ish color in this next photo.

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It was kinda fun to do something that was out of the ordinary and something that we would have done before she was diagnosed. She had very funky hair for Christmas. Right after Christmas, like on Boxing Day, we noticed that her hair was starting to fall out. There was TONS of blue/black hair in her bed, on her clothes, on the couch, on the baby, on me…pretty much everywhere.

I will probably be shaving my hair in the next few days. I waffle between wishing I wasn’t going to and not really caring because it’s just hair and being thankful because my hair’s at an awkward length right now where I have to do it everyday or else I look like a massive Q-Tip….it’s cute (or not). And, I realize that all of those thoughts to some degree of less must go through her head as well, and that’s part of the reason why I would join her in this way.

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This is a picture of Geli from this morning. I’m not sure if you can tell, but her hair has thinned out quite a bit. At this point, it looks like all of the “original” hair has fallen out and some of the new hair seems to be falling out as well. We’re not sure exactly how much will stay, but really….it’s just hair. And, it’ll grow again and then when she repeats this phase again…she’ll lose it again and then…..then it can really start coming back.

Geli’s been spending a lot of time laying on our couch over the past week. We’ve managed to avoid the hospital and we are SO excited about that. I’m a bit worn out by stress because on Boxing Day, Angelica woke up barfing and barfing and barfing and barfing and we really weren’t sure what was going on. Apparently either a bit of food poisoning or some wicked virus hit a few of my family, because my mom, both sisters, a sister-in-law, Geli and myself (to a very small degree) had some serious gastro-intestinal issues. Geli had a few nasty days and I wasn’t really sure what was going on. She had no fever, but was really not doing well. We weren’t sure what her counts were doing and were unsure if she’d be strong enough to fight off whatever was attacking her. Unfortunately, all of this also coincided with her finishing up the fist half of the current phase of Chemo that she is on. One of the side effects of the steroid that she was taking is wicked joint and bone pain. She has really been in pain over the past 2 days, in fact, she was in tears yesterday and needed some codeine to take the edge off.

She is really dealing with all of this as well as can possibly be expected, but all of this is not easy.

She has a break, and doesn’t start the second half of this phase until January 11th. We are hoping and praying that she really gets to enjoy this next week and a half; and that her counts recover as they are quite low….not decimated, but quite low.

We are going to be missing attending our annual Family New Years Party because her counts are too low to justify throwing her into the middle of 50+ people in one house. So, we are all feeling pretty bummed about that but I think it’s hardest for the kids because as adults, we can comprehend that it’s only one year and that it’s for a really good reason, but the kids…well, they just see it at one more thing that we are missing out on. We are trying to come up with something fun, exciting and yet low key to be able to do with the kids to celebrate.

We may just celebrate by actually staying up until midnight and banging pots and pans….yesterday, Angelica actually asked what the deal with New Years was about. See, typically we’ve just put out kids to bed and then gone to bed ourselves, well before midnight and then celebrated New Years with our extended family on New Years Day. So, they have no idea about New Years Eve celebrations…..maybe that just might be what we’ll do this year…..if I can make it up until midnight. Or maybe not……we’ll see.

How are are planning on celebrating the New Year?

Getting Away from it All (part 2)

After lunch, we headed back to the hotel and even before we got there, the kids were already asking to go swimming.

So we all got our bathing suits on and headed back to the pool.

Me

I really was on this vacation – see?!?

The pool had actually been closed for maintenance and had just re-opened all clean and sparkly on the day before we arrived. Between that and the fact that we were the only ones in the pool the entire time we were there…..it was perfect for someone with a compromised immune system.

So Happy

Josiah was SO excited to be able to be swimming. He spent the majority of the time in the hot tub, and so did I. We typically would go swimming every week, but, back in the summer, we had to cancel our membership to the Walnut Grove Rec Centre because the pool is just not a great place for Geli and we didn’t want the other kids picking something up and bringing it home and so it was such a treat to be able to swim as much as we wanted for a few days.

Thrilled to be swimming

Jon and Jeremy and Judah hit the weight room before they came swimming…..

Working Out

I think this was the most exciting part of the weight room – for Jeremy…..

The draw of the Fitness Room

We don’t have cable and so it was such a treat.

So Happy

Judah worked on some push ups…..gotta build up that upper body strength, eh?

Girls ready to side

This is the 80 ft water slide that is inside the hotel. It was AWESOME! It’s almost pitch black inside the tube and you can get going pretty fast. It took a while and a little bit of coaxing, but even Josiah went down the slide.

Siah on the Slide

There were lots of smiles….

Wet Smiles

and a lot of silliness…..

Silly Faces

And SO. MUCH. SWIMMING!

Frog Boy

It was so amazing to step away from everything. To get away from our house, from school, from work, from cleaning, for deadlines, from everything and to just do something totally fun together as a family. After Swimming on Tuesday morning, Jeremy snuggled up next to Jon and looked close into his eyes and said, “Thank you Daddy. Thank you SO MUCH for bringing us here. This is the BEST EVER!” All the kids mentioned many times, just how thankful and grateful they were to be able to get away and to stay at the hotel and to go swimming.

Everyone relaxed and it felt like everyone was able to catch their breaths and de-stress a little.

It’s amazing how little time it took, once we got home, for everyone to try to pick up the stress again. Xani came to me panicking about school and homework and I actually told her that for that night, we were still on vacation and that she got to relax and take it easy and then tomorrow she could make a list of everything she needed to get done and to then start plugging away at it.

This is kind of where we are at. Times away like this are so precious, because we do kind of have this weight of stress that we are living under. It’s like our reserves for dealing with normal (stressful) situations are all gone and we have barely enough to just hang on in each moment. I know this is not forever, but it does wear on me to see it playing out in my children. Children are not supposed to be stressed like this.

But, not to focus on the negative…..our time away was so fabulous. So needed. Such a blessing. So fun…..it was simply amazing.

We are so grateful to Jon’s parents for coming with us. It drastically reduced the kid to adult ratio…we were only out numbered by one. It was a blast to hang out with and to be able to spend some time away with them.

All of Us

We are so thankful to the Super 8 in Aldergrove for giving us a great deal. We so hope to be able to come back again.

And we are so grateful that we were even afforded this amazing time away. Thank you, thank you, thank you. The opportunity to escape was such a gift.

If you are interested in seeing the rest of the pictures from our time away, click here...

Getting Away From It All (part 1)

Thanks to the unbelievable generosity of some amazing people we were able to “get away” from everything for 2 days and 2 nights. It was so needed and so perfect for us.

We made plans to take the kids to the Super 8 in Aldergrove. They have a fabulous pool and water slide in the hotel. And that made this particular hotel so SO perfect for us. Our kids are the hugest water bugs that you’ve ever seen and we knew that they would love to go somewhere and swim as much as they could for a few days. It sounded like the perfect get away and in hind sight, it was! It was absolutely perfect!

We sent the kids off to school on Monday morning while we tried to get a few things done around the house and to ready ourselves to head out later that afternoon. Jon’s parents were up for “getting away from it all” and so they decided to join us.

At dinner time, we met up with Jon’s parents and we went for dinner and then headed out to the hotel. We got there, unpacked and took the kids down to the pool. We swam for over an hour and then headed up to bed. The next morning we got up and hit the complimentary breakfast. This hotel had the most amazing breakfast. Everyone enjoyed themselves and as soon as they finished breakfast, the kids wanted to head back to the pool.

Relaxin at Breakfast

Jon and Siah relaxing’ at breakfast

Xani and Geli were over the 12 year old age limit and so they headed into the pool – just the two of them – but the boys had to wait until I was able to take them into the pool. They were pretty patient through.

SO Cute

Judah got in some good cuddles with Nana.

Cuddles with Nana

After we finished a couple of hours of swimming, we headed up to our room to dry off and just relax.

We had picked up some fake mustaches before we headed to the hotel and in light of the whole “Movember” deal….we decided to try them out. I realize it’s not quite the same, but we had a lot of fun…

Even the Baby gets in on the action

Judah looked quite sweet in his “stach…..

Loving his 'Stach

Jeremy was throwing out his best Rico Suave vibe……

Looking Hot

Me and mah boy….rocking our ‘staches…..

Rocking it Hard Core

Geli rocks the teeny, tiny mustache…

Siah's Styling

While Siah sends out a little grey action….

Sibling 'Stach Love

Xani just ended up looking a little strange…

Even Nanagot in on the Action

We even convinced Nana to get in on the mustache loving…

The Men

And finally….here are my men. Looking so, SO sweet!

Playing

Looooooooong after the rest of us got tired of the mustaches….Jeremy carried on. He is SO cute.

Judah did pretty good in the hotel. He was happy and easy going. He did have some rough nights. And that meant that I had some pretty rough nights….which ultimately……SUCKED. But other than that….he was amazing.

Playing in His Chair

Xani and Nana pulled out the puzzles. We do love to do some puzzles.

The Puzzle Queens

After a bit, we headed for lunch….

Enjoying Lunch

Siah LOVES his ketchup. Basically, the fries are a tool to get the ketchup into his mouth.

Giggles

We had lots of laughs and giggles and after lunch, we headed back to the hotel for more swimming……..

(stay tuned for part 2)

Stolen Moments

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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.

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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.

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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.

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

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

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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.

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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…..

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The kids played and played and played some more….

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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.

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

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

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

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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.

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The kids swung on tire swings….

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….played on the toys….

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……slept……

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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?!?

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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.

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There were tears and hugs…..

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and even kisses….

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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…..

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

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

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

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

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

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