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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.

Ponder Park Adventure

Yesterday morning, Jon and Geli had to be at BC Children’s Hospital at 8am…..this meant they had to leave our house at 6:30am……YUCK!!

We (Myself, Xandra, Jeremy, Siah and Judah) packed up and headed out to my sister’s house. They’ve just bought an acreage and it’s an unbelievably gorgeous piece of property and when they are done remodeling…it’s going to be an even more amazing home!

We decided to walk the pipeline in the park close to their house and if all went well, we should end up at a little creek where the kids could puddle around for a little bit.

Neither Debbie nor I had ever done this exact “walk” and yet we decided to take 5 children and one double runner stroller…..I’m not exactly certain what we were thinking and yet off we went.

We reached the park and then headed down the path. There were SO MANY berries and the kids were in heaven picking and eating…the huckleberries and salmon berries were delicious. We reached a fork in the road and veered to the right and headed into the tall grass. After about 2 minutes, we reached the pipeline.

By this point we were 4×4’ing with the buggy and I was just glad that it was a jogging stroller because there was not way that a regular stroller would have handled the grass or the uneven ground. As we looked ahead, we saw a hill sloping downward….

That hill sloping away from me…..that the kids are running down…..that was just the small hill….it got worse, much worse!

There was a second much steeper hill, that I never ended up getting a picture of, because it required both Debbie and myself to hold to buggy. At one point, I looked up the hil behind us and commented on the whole “if we are going down we are gonna have to go back up and how bad that was gonna suck” business! But, we could see the creek and we were so close and so we carried on.

Of COURSE we wore appropriate foot wear……

Here we are at the bottom of the hill. The boys laughed and giggled the whole way down the hill….

Jeremy was the first one to get in the creek and everyone else followed quickly after. The water was FREEZING!!!!! Like, actual pain, hurt your feet freezing, but the little babies, didn’t seem to care…they just wanted to get into the water and to play with the mud…

This little one was more interested in balancing on the rocks and trees than actually getting into the water…..at one point he fell and scratched his leg and then showed me the scratch and told me that the fish had bitten him….it was pretty cute.

Diesel (the dog) was so funny. She kept sticking her head completely under the water and picking up rocks that were bigger than grapefruits and pulling them out of the water….at one point Jack decided to throw her a stick…

So of course he had to pick up the largest stick the he could find…..

He is just SO CUTE, isn’t he?

The littlest boys were in HEAVEN playing in the mud…..

Judah would FLIP OUT anytime I tried to remove him from the mud. This is the little boy who will settle instantly if you take him outside or put him in a bath….this combines the best of both….outside and in the water….

The creek is in the bottom of a…….valley? There are two steep grassy hills on either side of the creek. This is the hill of the other side of the creek – the side we did not walk up or down…purdy, ain’t it?

Here is shot of the creek……this is such a pretty, pretty area.

We stopped playing long enough to have quick snack break….those dairy-free, gluten-free oreo type cookies are sure delicious and the extra sand and mud makes them even more delicious….

Then we packed everything up and took a look up the hill….here is a god shot of it….can you see Josiah in the bottom left corner….yah, it was pretty huge. And after this hill……there is a second one to climb…

We started out with both Debbie and I pushing the buggy together and that worked for a bit, but then it got difficult and Judah started screaming and the wheels kept turning around and wouldn’t lock still and I got tired and Debbie ended up wrapping the dog leash around the front bar on the buggy and pulling while I pushed….We had many rest breaks and at the top of that hill that I showed you….Josiah sat down and refused to go any further.

On the trip up the first hill, he had been hanging off my back pockets and the buggy and whatever else he could find to get some help to get up the big hill and he was officially POOPED! I didn’t blame him and yet we were already pushing 50 pounds of baby up the hill added on top of the buggy and I didn’t need to carry another 40 pounds of Siah on top of that.

Aunty Debbie lured him up the second hill with promises of a piggy back ride once we reached the top….and HE MADE IT.

We finally made it back to Debbie’s house and had some lunch and then packed everyone up to head home.

On the way home, my little man fell asleep. He climbed the hill, but the hill won!

I tried for about 5 minutes to get him to wake up and that was not happening. He was SO tired! And so I let him sleep.

It was a great adventure but I don’t think we’ll be taking the buggy back down to the creek any time soon…or ya know…like EVER!

You can see more pictures from our great adventure here!

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.

16 Years!!!!

It’s amazing to me that it’s been 16 years already and yet I can hardly remember what my life was without him in it.

We married young. I was 19 and he was 21 and we fancied ourselves so old and so terribly mature.

HA!

We were babies!

Ah well, we’ve made it this far! And we’ll make it a lot longer, God willing!

We’ve made it through 10 moves, a stillbirth, 3 miscarriages, way more church politics than anyone should be involved in, multiple jobs, job loss, opening a
business, way too many fights, 5 amazing children, so many amazing conversations, so much laughter, and joy and amazing opportunities, amazing family and equally amazing friends…….we’ve been through a lot and we have lots more life to live.

I married my best friend and I’m so thankful I did! He is truly my best friend and my greatest love. He is caring and supportive and loving and one kick ass father.

He is the perfect man for me! I don’t know what I would do without him!

I’m looking forward to growing old together, to seeing what we will be accomplishing in the days and months and years ahead. Life is an adventure and I have an amazing partner to experience it with!

Happy Anniversary to you, my Love!

As It Is……

I typed this earlier today and then didn’t have time to proof it….so it may be scrambly or not make sense in parts, but that is how things are going these days and if I try to take the time to work on this….then I may just give up and not post it….and so here it is….here I am…..there is where I’m at…just as it is….

These are some tough days that we are going through right now.

Angelica’s counts have been so low over the past week or so and it makes for some very stressful times. It feels very vulnerable and like she is unprotected. Because the “enemy” are unable to be seen with the naked eye…it makes this fight, that much more difficult. We don’t know where they are and so it makes protecting Angelica almost impossible.

Any open wound, no matter how large or tiny is an open source for infection and at this point, a tiny paper cut could send her into the hospital……

It’s not that the paper cut could send her into the hospital, but that the cut is an open wound and if she comes in contact with a bacteria and it gains entrance into her body…..she has no ability to fight off that infection.

The health that you or I take for granted……the cuts, and scrapes…the bacteria that we come into contact with and never think twice about,…..it all poses a very serious risk for her.

And right now especially, it’s tough….because she is supposed to be going to New York in 12 days. That’s less than a course of antibiotics (14 days) and throw in the 24-48 hours that it would take to culture the particular strain of bacteria or virus and you are looking at possible 16+ days in the hospital……none of this do we want on a good day…..much less when her trip is in 12 days.

Every time she mentions, not feeling well or that she has an upset tummy or a headache, or she feels hot or cold…..every time she coughs or feels like she might barf……we reach for the thermometer to take her temperature because when her counts are this low, a fever is often the only indicator that something might be brewing in her system.

I have been feeling so worn down as of late. I feel like I am reaching the absolute end of my rope. There are things that are just piling on top of everything else and making the end of this stage of the journey that much tougher.

I’m physically tired. I’ve mentioned this before but it’s true. I can keep putting one foot in front of the other because I HAVE TO, but that doesn’t mean that those feet don’t feel like they have been dipped into cement.

I’m emotionally tired. I’ve spent a good portion of this past week just on the edge of crying and every little “bump” has sent me over the edge and set off tears.

Probably the biggest frustration for me personally is the mental exhaustion……I am just not able to compute things right now. I am struggling with organizing and putting things together. This might sound so simple and ridiculous to you, but I walked around Superstore 3 times on Monday afternoon with my shopping list in my hand and yet……I just could not seem to make sense of my grocery shopping list. I had to double back to pick stuff up and in the end I had to get Jon to just walk me through the last bit of my list as I just couldn’t make sense of it……even then….we walked away from the store forgetting to pick things up.

I walk around my house forgetting what I was supposed to be doing and why…..

I’ve just gone too far and things that I used to be able to do on brain power alone, and then with lists and prompts and gadgets and reminders…….I find myself unable to do even with all the “help” and tricks that I’m trying.

And that inability to function at the top of my game it makes all of this that much tougher. I don’t’ even feel like I’m functioning “in the game” and that sets off those tears all over again.

I’m trying so very hard to be gentle on myself and yet, I expect so much because I am normally capable….but right now I’m not….and that’s hard for me to deal with.

We reach for the thermometer to take her temperature and inside I am freaking out….praying and hoping and wishing (and truthfully panicking) that the thermometer will read low numbers….that I wont see a number indicating a fever….

Just that stress alone is too much right now….

On Thursday her neutrophil count was not able to be counted (it was too low to be measured…lower than .02). Monday when we took her in for blood work, her counts came back at .1 and while this is much better than the previous count….it’s still WAY TOO LOW and she is still SO at risk.

She will get another set of bloodwork on Thursday and we are hoping that her numbers will be over .75 and she can start Maintenance…..

Did you know that exercise actually boosts your immune system? Like immediately there is a benefit……when oncology kids are getting their bloodwork done to be able to start chemo….they have to be at a certain level in order to start the next phase of chemo. If their levels are borderline low…they will actually have the kids walk around the hospital or walk up and down the stairs a few times and then run another set of bloodwork and it will be up and over the level needed…..amazing isn’t it? It’s huge incentive to exercise especially throughout the fall,winter and spring……just some thing to think about, eh?

We’ve been walking everyday. We are hoping to accomplish a few things with this. One, to boost Angelica’s immune system and to get that neutrophil level up. Two, to increase Angelica’s strength level. She’s spent a great deal of this past year on the couch and it’s time to rebuild up the strength and muscle that she lost. Three, we are getting a little bit of sun, which helps to get extra vitamin D into all of us. That “happy vitamin” is so necessary and good for all of us; plus it puts a little bit of color into Geli’s skin and again with the whole…”she’s spent most of the past year inside and on the couch” business…..between that and being chemo induced anemic…..she’s been looking pretty pasty. The color gives her a bit more of a healthy glow….which matches her new healthy position in life! Don’t worry, I’m a big fan of proper and safe sun exposure.

We are hoping, although we won’t know, that her counts will have come up above .5 (the level that she was allowed to safely go to school at) by tomorrow…..this would allow her to do a few more things like going shopping with us and running errands and things like that.

Once she starts Maintenance, then her counts will obviously be high enough and I will feel like I can breath and relax….

To be honest, I’m scared. I’m scared of feeling like I can relax. I’m scared of how I might feel were I to just relax…. I’ve been trying so hard to keep things all together and it feels a bit like a dam might explode and I don’t feel like I could handle that. I’m scared of the tidal wave of emotions that might be unleashed were I to just relax….

I just want to go and sit somewhere by the beach and let the wind blow ~~in my hair ummmmm, well~~ on my bald head, to feel the sand in my toes…..to just close my eyes, and smell the salt air and let the intensity of this past year just wash away from me with every wave that crashes.

I’m hoping that this summer will be a healing one….and that I’ll get a few chances to make it to the beach.

Barf’tastic

My Sweet Siah came home from a sleepover….

He started complaining about his tummy hurting and he seemed quite unsettled and not his usual chipper self.

He managed to hold on for about half an hour after being dropped of and then……he barfed all over the floor.

AWESOME!

He’s now rockin’ himself a fever and sleeping over at Nana’s house.

It sucks to see your babies not feeling well. It especially sucks when you are trying to keep one baby safe while the other baby is not well….

It’s a good chance that this is what Judah had the other week but who knows….and we have no idea if Geli has immunity to it or not.

And so he’s over at Nana’s getting lots of cuddles and sleeping and eating ice chips…..Thank God for Nanas….they are pretty special…..and they have tiny mice friends!

Life Skills

It was high time that Judah learned the fine art of dipping.

Dipping cookies, that is……

On Tuesday before Jon and Geli came home, Siah and I sat down to have an extrememly healthy lunch of……..wait for it…………

Chocolate Chip Cookies.

(I was tired, lets just gimme a pass for this lunch, okay?!?)

We got a glass of milk to dip them into and sat down at the table.

Judah was crawling around on the floor and indicated that he wanted to be picked up and once he was picked up, he reached out onto the table and grabbed a cookie. He started to eat it, but after watching Siah and I dip our cookies into a glass of milk, he reached over and plunked his cookie into the glass.

He left it in a little longer than was proper, but i just figured that the softer the cookie the better it was for him…he’s only a year old anyway!

He crammed the milk soaked cookie into his mouth and stopped…..he seemed a bit surprised that there was milk in it and then he started sucking the milk out of the cookie and that was it…..he was hooked.

He went for a second dip and well….lets just say that his dipping skills need a little work, but what can you expect from a one year old….and it was only his first time ever.

I’m pretty sure that he’ll do better next time.

So What’s Up?????

Well, Jon and Angelica came home on Tuesday afternoon. Basically, they let her go home because she was just sitting in the hospital waiting for her counts to come up.

We really WANTED them to come home and it seemed like her counts were headed in the right direction and so we were kinda pushing for them to let us come home….and they did!

It’s SO NICE to have them both here and for us all to be together.

happy to be together

It was especially nice for them to be around for Xandra’s Birthday party on Wednesday afternoon because last year……well, last year Xani’s birthday was consumed with the Leukemia diagnosis and it was not the typical celebration of a birthday that we might do. We did celebrate, but it just wasn’t the same with the family split between the hospital and the home.

We fully expected Angelica’s counts to start rising and for them to come up quite quickly.

But, as of her blood test yesterday…..ya, that’s not exactly been the case.

Well, not entirely……

All of her counts HAVE come up except for those darn neutrophils…..those infection fighting white cells….ya, those are the ones that we need to come up. Everything else is coming up nicely. While her white blood count was a 1.9….her neutrophils were too low to even count…..this is NOT GOOD!

So, please, Please, PLEASE pray that ALL of her counts would come up and that she would not get any bacterial infection.

She’s also been coughing a bit and it’s just some stupid virus, but I wonder if it’s affecting her counts in some way. Like, if the neutrophils are being used up by the virus……

So, perfect health and amazing blood test results…….that’s what we’re looking for.

Other than that, we are just hanging low….staying at home…..not really doing anything fun or exciting until her body starts producing a bit more protection for herself.

So while Summer Vacation has started…..we really need her counts to come up before we can really start any “vacation-ing”!

We are on “fever alert” taking temps and doing lots of hand washing and cleaning……it’s a bit stressful, but we just continue on trusting that it will all work out in the end.

Happy Birthday, Xandra!

It’s your day today, sweet girl.

You are officially 13 years old today. I find it hard to believe that the years manage to fly by so fast and yet….I remember the day your were born…..I remember being told to go to the hospital by my Dr and then being told to go home because they were crazy busy…..so I went home to sleep for a couple of hours and then……then you were here!

You were such a cute little pixie, with such white blonde hair. I had no idea who you were or what you’d grow up to be but I was so excited to get the opportunity to know you and love you.

And love you, I do!

You are so very wonderful! You are such an amazing daughter. You are a loyal friend. You love so intensely. You feel so passionately. You are such an incredible person.

This has been such a tough year for all of us and you ave not walked away from this year without having been touched by cancer and it’s side effects. There are so many listed side effects of the cancer treatment, but you don’t see a lot written about the effects experienced by the family. In your intensely passionate way, you have felt so many of those effects in such a deep way. We’ve made it through a whole entire year.

Your entire 12th year was consumed with cancer and it’s treatment…..and yet….you were such a light in a dark time. It’s not always been easy but we did it.

Grade 7 Grad Dress – made by Nana C.

You have been a HUGE help to me through out this last year. You have helped out with the boys and with the housework and with meals…..you have just helped out so much! I am so thankful for your loving, kind, generous, giving spirit.

I believe that you’re thirteenth year is going to be the best one yet.

You’re headed into High School and I’m so excited for you. Just keep being yourself. You are so unique and as long as you stay true to yourself, and just keep being the amazingly friendly person that you are, you’ll do okay!

I’m so proud of you, my sweet Xandra.

Happy Birthday, my love!

Love,
Your Momma

Tuesday Morning Update

Well, we are still here. Angelica’s counts have been coming up VERY slowly. The good folks at BC Children’s want to make sure that when they send Angelica home, she won’t end up getting sick and having to come right back… They want her immune system to be strong enough.

Its hard though, because Angelica is not sick. She is completely healthy. The concern is not about her current health, but her immune system strength. It feels so frustrating to be sitting in the BC Children’s Hotel and just hanging out, knowing that Patti could really use a lot of help at home, and not being able to go home and help.

Alexandra turns 13 in two days and has a big party scheduled for tomorrow. We should all be at home today and helping to plan the party, but instead we are waiting to hear from the doctors to find out if they are going to “risk” sending her home.

So please pray that we get to go home, that Patti doesn’t stress too much about the party, and that Alexandra’s day turns out fantastic tomorrow.

Jon