Life – Page 13 – xangelle.com

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.

On Vacation…

We’ve been going to Ross Lake since the year we got married (that makes it 16 years) and we’ve only missed a few years. Last year we did not go, cause we were in the hospital all summer. What a blessing it is to be able to take Angelica (and the rest of our healthy children) up to the lake this year and have her health good enough that we can be out of cell phone range, because we don’t need direct access to the hospital right now.

It seems like we haven’t been very plugged in to work or school or other things and taking a vacation from all that right now is somehow wrong, but we have been living in a pressure cooker for the last year and a de-stress is very much in order… so look for us again (with fresh pictures from our wonderful Ross Lake) after August 29th.

Please Tell: What does your family do for vacations? What do you do to de-stress? Please share a vacation or camping story here for us to read when we get back…

We Love You All.

~
Jon

Busy, Busy, Busy

Well, things have been a little quiet for the past few days and that’s because life has been SO CRAZY BUSY!

We had Chris and Brynn’s Wedding on Saturday. Angelica and Alexandra headed up to Camp Goodtimes (the cancer camp) for a week. And I am trying to get ready to go camping with three little boys underfoot and no big girls to help……while recovering from the chaos that comes with a wedding.

Oh and what an AMAZINGLY BEAUTIFUL wedding it was! Hopefully I can snag a few photos and put them up to show you.

My house is a disaster. I had a Doctor’s appointment for myself and Judah today and I have a dentist appointment tomorrow. GAH! I’m not entirely sure how I’ll get it all done, but I’m sure that it will eventually all come together. It will, right?

Judah and I went to the Dr’s today to talk about veins, moles and poop!

Sounds like a fun trip, no? Can you guess which issues belonged to whom?

Well, maybe you shouldn’t guess….wouldn’t want things to get too embarrassing up in here…

I have the moles and veins and Siah is dealing with poop issues. There, does that make it a bit clearer…

I go about once a year to get my moles checked out and to make sure that none have changed or that any new ones aren’t scarey and as of this point….everything is A-OKAY! None are sun-related and all look fantastic…well, as fantastic as moles can look…

The veins….well, I have a couple of veins on my calf and yup….apparently they are varicose veins and I can have something done about them because well, they are not cool looking. So, I’m probably gonna do something about them before next summer…but no rush.

And then there is Judah. Still having pooping issues. And from all the symptoms that I described (Diarrhea, bloody mucus, food not being digested, food processing through in a matter of 4 hours, etc.), it could very well be celiac disease. As the treatment is the same (no gluten) we are just gonna be extra vigilant for right now, but will get him tested in a year or so when it’s a bit easier to draw blood and to do the other testing.

Did you know that Celiac Disease is most common in people who are Irish, Scottish, English and Scandanavian? Guess what my heritage is…….yup, all four of them. Not to mention that on both my side of the family and on Jon’s side of the family there are people who have issues with wheat…..I guess we are blessed that only Judah seems to have massive issues with it. Although I know that wheat/gluten doesn’t sit well with me either…

Oh well, I’ve gotta run and clean this house and plan out this week and the next two weeks worth of meals…..GAH!!! Not fun!

So, how have you been?

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!

A Moment To Breathe….

Jon sent me to Starbucks to get away from the house and kids for an hour or so on Saturday morning and while I avoided writing anything for the first hour, I figured that I should at least try to work out some of the crap that is banging around inside of me……..

I’m sitting in Starbucks feeling like I should at the very least attempt to put my thoughts down onto paper.

I’ve been so all over the place recently and it’s frustrating me.

I want to be able to talk about how I’m feeling and why, but every time I think about what I want to say it all comes across whiney and needy and I hate that.

The church that Jon works for is going through a tough patch and he’s not gotten paid in the last month and while we’ve managed to scrape up some funds from small tech jobs here and there……it’s only just been barely enough to cover the bills AND he’s been crazy busy trying to juggle everything.

I have been SO FRIED from this past year and I was really REALLY hoping that I’d get the summer to be able to rest and recuperate and instead of having a slower paced life and more time with Jon….I’ve had more heaped on me and less time with him…..that part sounds like whining – I know…..but I love Jon…I love being with Jon….I love talking with him and working things out with him. We work so well together as a team…and this past year has stressed and strained us so much! We are okay! We are dealing with “ALL THIS”, but I miss him so badly and I desperately wish that we had some time with each other….but it’s not really happening right now.

And now….this whole post has gotten de-railed for me because I feel bad for whining about my problems and issues when there are people out there who would give anything to be in my shoes…..

I guess it shouldn’t be de-railed because I still have a ton of other issues in my life, and I’m not really sure who would want to trade for those…

I guess what I’m saying is that no one’s life is perfect and I’d give grace to someone else who was complaining about their life and the tough things that they were going through and so why shouldn’t I expect that others would treat me the same way?

I guess this all goes back to m not wanting to bother people….I struggle with that so much. I don’t want to talk about how tough my life is when I know that others are struggling with their lives and yet, why am I okay with them having issues and talking about it?

I dunno. Any thoughts?

Another thing that is weighing heavy on me is the whole Autism/Aspergers thing with Jeremy. I’m terrified of not getting a diagnosis and yet when going through this process – you must come face to face with all the negative aspects of this “syndrome” or “disorder” and well…..it’s pretty negative.

To have to list down on paper all the areas that your child struggles with, to have to admit that it’s pretty bad……to see what is considered “normal” or “neuro-typical” and to see that your child is not even anywhere close that that ideal……. When, over the past 10 years, you’ve come up with coping mechanisms and put measures into play to structure your lives so that you can pre-empt the negative aspects of this “disorder” but then to realize that it’s “not normal” to have to live like that…its tough!

What’s even harder is when your child is desperate to be around people and yet they don’t realize that their actions make people uncomfortable……..and aside from explaining to people (most of whom don’t care or understand or care to understand) that your son has……..has what???? He’s not been officially diagnosed and then I’m right back at the whole, “I’m terrified that he’s not going to get diagnosed and we’re going to have to do all of “THIS” by ourselves” and I know that at this exact moment I don’t have all the answers that we need to help him be the most successful person that he could become…….it just about destroys me!

On top of that, I’ve been noticing that Siah is displaying some of the symptoms of being on the Autistic Spectrum…..it’s difficult to get him to look you in the eye. He is very literal. He doesn’t do a lot of pretend play. He has melt downs when things aren’t exactly as he expects them to be (I’m not just talking about typical 3 year old behaviour)….He is less understanding of social situations than “normal” kids…..and although he doesn’t seem to struggle as badly as Jeremy does….he’s only 3! This means that he’s not in a lot of the same social situations that we see Jeremy struggling in.

We were supposed to get a call in July to book an appointment in August for Jeremy and I’ve not heard anything yet. So I did call in to our case worker on Friday, but…..she only works on Tuesdays and Wednesday’s and so I’ve got to wait until Tuesday before I hear back from her……GAH! I’m so sick of waiting.

I really wanted to get this dealt with BEFORE Jeremy went back to school so that he could get started on the right foot and not be struggling from behind……..I’m still hoping that we are still on track for an August Appointment for Jeremy.

Well, After all of that…..I’m outta time. I’ve got to head home back to the masses. I’m just gonna post this for tomorrow and hope that if it comes across poorly, that you’ll all just have grace for me…..well, cause if you don’t, I’ll just cry. I might just cry anyway!

GAH! I don’t really feel like I’ve worked anything out inside of myself and I hate that……

I do believe that I’ll be okay….that we’ll be okay but I’m tired! I’m tired of feeling like I’m fighting for everything……I just want a moment…..a moment where I’m not struggling or fighting. I just want a moment to breathe…..

Round Up

So, I have a few photos and videos to share with you….and so I thought I’d try to throw together a montage….or basically just a list of pictures and videos with some (less than) witty banter kinda wrapped around it…..

Last Sunday, my brother Tim and my sweet nephew Max popped over for a quick visit….Max is just SO darling and he’s smiling and coo’ing up a storm. He is just one of the most darling little men in my life.

Earlier in the week…..like possibly on Monday or Tuesday, Jon and I took the kids for a walk and when we got to the boardwalk there were young owls up in the trees. It was SO cool to see them so close. They were screeching if they felt scared and we tried to be as quiet and respectful as possible, but between Jeremy and Josiah…..we weren’t as quiet as I’d have liked to be….

I think that it was Wednesday that Jack came over for a quick visit while Debbie ran some errands. Judah and him were having so much fun pulling the diaper wipes out of the container. They just kept coming and coming and coming…

On Thursday, the boys and I went for a walk. We go for walks to entertain the boys, to wear them out, to keep them from destroying the house……and to keep me from getting any fatter…..

Just across the bridge, on the path close to our house I came across these mushrooms. Aren’t they cool looking? Anyone have any idea what kind they are? We didn’t touch them, but they were too pretty to not take a picture of!

We live in one of the most beautiful places, don’t we? This is literally 5 mins from my door. I LOVE British Columbia!

We went to one of the many parks around our house and I watched Josiah climb this thing over and over and over. Every time he did it, I would panic a little (after all he’s only 3), but this kid is part goat (ha ha ha) and has been climbing since he was very little and hardly EVER falls….and so I try not to freak out and wrap him in bubble wrap and keep him tied into the buggy sitting beside me….

I forgot to put shoes on Judah and he was going all howler monkey on me at being stuck in the stroller and so I just let him play in the rocks……

Those rocks…….GROSS! Judah was FILTHY when I picked him up to walk back home. He looked like he was a powdered doughnut….only covered in dirt and dust and who knows what other filth. So disgusting! But he enjoyed himself and that’s what’s important, right???? I’m still not so sure of that, but oh well!

I also find that the days we go out for walks….the kids sleep SO MUCH BETTER! Case in point…..

We had sat down to watch a quick video before bedtime and within 5 minutes of snuggling with daddy he was GONE! I love it when bedtime is that easy.

On Friday, my brother came over to finish my hallways and stairs, and Daisy and Max came for a quick visit too….I love sleeping babies….probably because mine hardly ever sleeps…..

and with that…..we’re finished this session of Round Up!

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.