Health – Page 4 – xangelle.com

Magnets And Gas

So there I was…..doing pretty good. I posted every day for a while and then…BAM! Life kinda took over!

But, It’s all okay NOW!

Last Sunday we had some people over for lunch and one person brought their super cool magnetic necklace, block, toy thingy. This thing is so cool.

It was getting passed around and looked at and played with and somehow 5 of the little tiny magnetic balls got lost. I managed to find 1 of them which left 4……I’m pretty good at Math, aren’t I?

I wasn’t too worried because I had swept every square inch of my floor and I didn’t figure that Judah had been around when it was getting passed around and so there was no way that he had gotten into or near any of these tiny – BUT STRONG – magnets.

Everyone left and I said that I’d keep a look out for the other 4 magnetic balls and carried on my way.

Monday was just a normal day and Tuesday looked like it was shaping up to be more of the same…..until the afternoon. I went to change Judah’s diaper and when I did……something looked oddly shiny and most definitely out of place. Yup, It was one of those magnetic balls.

I was a bit shocked and super upset because if there was one…what’s to say there wasn’t more than one and how would I know that two magnets hadn’t stuck together inside of his intestines and were going to cause some major problems….if you know me at all, I went straight to the “worse case scenario”. It was pretty sad. I couldn’t fathom a million hour ER visit and so we called our family Dr to see if they could possibly fit us in. They couldn’t so then we called the walk in clinic and seeing as he was happy and had no fever and didn’t seem to be in any discomfort, they said to bring him in first thing in the morning and they’d check him out and send us for an X-ray. Of course they gave us the whole “fever, blood, blah, blah, blah speech – do not pass go, do not collect $200, go directly to the ER” spiel.

Long story short, on Wednesday morning, we hit the clinic at 8am….hit the X-ray facility at 9:am and were back at home at 10:30am waiting to either hear or not to hear…in this case, no news was good news.

As soon as I got home, Siah met me in the garage complaining about a sick tummy. This was weird because he was fine when I left. Over the next hour, he got progressively worse to the point where he was sitting on the floor crying in pain. When asked where it hurt, he kept pointing at the lower right side of his abdomen…..heck, between cancer, ADHD, ODD, No Gluten, No Dairy, No Soy and now possibly a Magnetic Gut…..heck, lets just throw some appendicitis in there as well.

Jon took him up to the clinic and fortunately the wait time was only about half an hour. After about 15 minutes, Siah burped about 4 times, and then “miraculously” his tummy ache went away.

And just to be safe, Jon did stay to see the Dr. The appointment went a little something like this…

Dr: Nice to see you guys again. This little guy didn’t swallow any magnets, did he?

Jon: No, and he burped about 15 minutes ago and then everything stopped hurting…..so sorry for wasting your time. My son has gas.

Dr: Well, it’s always good to get it checked out anyway.

but you all know he was thinking…..”stupid parents, bringing their kids in because of a little gas.”

And then basically, my week just kind of blew up after that.

In all seriousness, I feel a bit traumatized about the whole hospital thing. When we found the magnet in Judah’s diaper, all I could think of was which hospital should we go to? And what about Jon’s new job and how would I handle caring for the kids by myself and would it be better to go to Children’s or to be closer to home….and what might they have to do to Judah if there were magnets stuck inside of him…..and how would we deal with the whole Gluten Free thing and well, it was not fun….

The whole hospital thing with Geli has not played nice with my emotions and I hate being confronted with how “unstable” I feel over the possibility of a hospital visit. Not Cool, cancer. NOT COOL!

The rest of the week didn’t have any medical craziness in it, but we did pull apart Jeremy’s room, the girls closet, the garage, the boys room, the TV room, ALL (as in every single toy that we own) the toys, and our storage closet. It was quite the undertaking and yet…..we did it!

This is the boy’s room that is right beside ours, down stairs in the basement. We currently have all three of the boys sleeping in this room. Fun times, there! (oh, the wall border and color….original to the house. not my choice, just haven’t changed it yet, but I did want to mention that I do NOT like the decor…carry on, please)

We made two dump runs and put away 15 separate bins of toys. No, they are not all HUGE boxes of toys, but all the toys we own are separated out into their own groupings…..Hot Wheels, Mr Potato Head, Playmobile, Little People, Infant Toys, Wooden Blocks, Tinker Toys….you get my drift.

We’ve put the majority of them away and I think that will cut down on the mess in the rooms. That’s the idea any way. We’ll see how well it plays out over the next couple of months.

Here is Jeremy’s upstairs room…

(I have NO Idea why it’s so stinking small. I thought I used the same camera on my phone, but obviously not…sorry about the mini view…just squint and then it should be all good! and again with the house’s previous occupants decor….lovely, ain’t it?)

The carpet is a bit thrashed but it’s the original carpeting from 15+ years ago and it just needs to get replaced, so other than a quick vacuum….I’m not even trying to clean that sucker.

Probably an even bigger miracle than just cleaning things out…was that we also managed to finish off each day of cleaning with a totally clean house.

Do you ever start to clean something and then find that the job is too big and you end up with a mess at the end of things that you pulled out, but have no current home and so you end up with a big a mess just in a different location in your house. Yah, it was my goal to not have that happen. YAY US!

Part of my push to get this done was because Jon starts his new job tomorrow morning and it was my hope that if we cleared things out and got rid of a bunch of junk that it would make it easier to keep things clean. Again, I’m really hoping that’s the case. Only time will tell, right?!?

What are your tricks for keeping a clean house? Do you have any tips to share?

Day 7 – Castaway Cay

We woke up on Friday morning and rushed outside to our balcony because we knew that we should be close to Castaway Cay.

We were close. Once we docked, there was still some time before we were allowed to get off the ship. I snapped a few more pictures as we got a little bit closer…it looked SO INCREDIBLE and we were so excited. We went and had breakast and then got our stuff together and got ready to hit the beach. WHEEEEE!!!!

We docked over on the far right in the picture and went to the second beach over on the left in the picture. There is a little tram that takes you to the different locations on the island.

We found some chairs and umbrellas and dumped all our stuff off and the kids headed out to play in the sand and the water.

The weather was INCREDIBLE and I was a bit worried about us getting fried to a crisp. Angelica demonstrates perfect sunscreen application and technique in this next photo..

The kids were so happy and excited to actually be here. We’d been talking and dreaming about Castaway Cay for a long time and the day had finally arrived.

And they did amazing at wearing their shirts when I started to get worried about too much sun….

I really do have amazing kids. It was highlighted to me on this trip, just how great these kids of mine are. See, I’ve spent so much of this past year inside of my house and I’ve not been able to see the kids interacting with others. It’s been a very isolated year. I see them bickering with each other and not listening to me and fussing or whining or disobeying and because we are together SO MUCH, I’m sure that they get as sick of each other and me as I do of them….I’m not saying that I don’t love my kids, because I love them fiercely and desperately, but sometimes we all need to be able to have “breathing” time and that time has been sadly lacking from our family over this past year and a bit…..

I’ve seen their faults highlighted by our small insular world and to see how polite they were on the ship and to see how well they handled themselves in interesting and challenging situations…..to see them help others and give to others and be caring and compassionate and gentle and loving and respectful….it was so nice to see all of their positive attributes highlighted like that. It was even more special to have the table beside ours comment to us about our children and how they recognized how much work we must put into them to have them be such well behaved and respectful children. And they sat beside us for the entire week so it wasn’t just one good day….hee hee!

Judah got a bit cranky and so I put him to sleep….and then Jon transferred him to a beach chair to sleep for a while. If I try to put him down, 9 times out of 10 he will wake up. If Jon takes him and then puts him down, he will stay sleeping……I have no idea why this is? Any ideas? – it drives me nuts!

Jeremy was once again is HEAVEN collecting shells and he even found a whole bunch of live crab thingy’s in their shells…they were just teeny, tiny, but J was SO excited. He and a few of the kids that we played with at the other beaches spent a HUGE portion of time building a sand castle for these little sea creatures.

It was the most amazing day and there was even a bit of cloud cover so we weren’t scorching hot. Doens’t that picture look UNBELIEVABLE!

The Baby woke up…..and wanted to play in the sand almost immediately..

We were right beside a Lifeguard station and he crawled over to the tower and right under the chair there was a huge coconut that he wanted to play with…

We started to get a bit warm and so we all went back down to the water to splash around a little…

The lagoon was so shallow and Siah was so excited to be able to swim “all on his own”. I swear that kid is part fish the way that he LOVES the water.

Speaking of fish…..can you see this fish? There were these “almost translucent” fish swimming around and the kids had a ton of fun trying to “catch” one. It was so funny to watch.

This was such an incredible adventure for our family and such a HUGE blessing for Angelica. This felt like the beginning of a new part in our lives and the end of a terrible time.

We are not finished this journey that we are on, but Geli has continued to get stronger and stronger and we are so confident that she will overcome EVERY negative aspect of these past 17 months.

When we did get back to the ship we had to hurry because we had been invited to a very “special” event that was happening for the Wish Kids and their families. There were 2 other Wish kids and Families other than ours that were on the ship.

We had a private meet and greet with Captain Mickey and Angelica was given a special Captain Mickey doll!

This was a day that we will remember for a long time. It was an incredible way to finish up an unbelievable trip.

We are so thankful to Children’s Wish for turning this trip from a dream into a reality for Angelica and our whole family.

If you are interested in seeing the rest of the photos from Castaway Cay, please click here!

There were some pretty cool things that happened on our trip home and so I do have ONE more post about our day of travel home, so check back for the trip round up.

Thanks for all your support and love and prayers for us, over this past year and while we were on the trip. You really do mean so much to us and we are so thankful!

A Whole New Level of Craziness

Things have felt a bit intense over here recently and I feel like I’m going non-stop from the moment I crawl my OH-SO-TIRED self out of bed in the morning, until the moment I flop into bed at night.

Now to be completely honest, I shut down for the evening around 8:30-9:00pm on a “normal” night and then Jon and I sit on the couch and watch a show or two and then I do the whole “flopping into bed” thing.

So I’m not on the go ALL DAY, but boy it sure feels like it. And it’s been worse over the past few weeks because my babies have been sick. Josiah brought home some lovely virus from the Cruise ship (YAH OVER A MONTH AGO) and he was sick for a week-ish and then I got a sore throat and cough and then Judah picked it up and then just as he was getting better…..both Judah and Siah managed to pick up another bug from somewhere.

And those two little boys have been CRANKY!

And Judah’s not sleeping (not at night or during the day) and he’s wheezing quite a bit and I’m using Eucalyptus Cream on his chest 4 times a day and using a Castor Oil pack on him twice a day and trying some homeopathic medicine twice a day away from the Eucalyptus….and between his clinging and whining…..when I sit down at the end of the day….I’m so DONE!

Unless I’m holding him…..this is typically what Judah has looked like for the past week or so….It’s about as awesome as it looks….blurry photo and all.

He seems to be a bit better today than he was yesterday and I’m hoping that tonight is better than last night….Hello 3:30am until 5:30am – it was nice seeing you!

Jon has spent the greater part of this week Job Hunting and it seems like his efforts have paid off. He should have the contract in his hands as of Monday, but he has been contracted to do a great job for the next three months. Hopefully, there will be more work at the end of the three months, regardless, I know that we will be okay. He should start on Monday November the 14th. Yah!

I’ve been working on making a bit of grocery money in my spare time (HA HA HA HA!) and I have a few things put up in an Etsy shop…with a few more things to come….I just need to take pictures of the products.

If you see something that you like, you are more than welcome to contact me personally and we can work out payment details….I know that some people don’t like to pay for things online and that’s totally cool. I understand!

If you’re are interested in checking it out, please click here. I’ll be adding new things over the next few days so be sure to check back.

I have planned to “MAKE” time tomorrow to sit down and pound out the rest of our vacation. I can’t believe it’s taken so long to get to it. Life has just been that crazy busy for us! It’s mostly good, but I’m a big fan of quiet, peaceful, SLOW times. The business gets to me after a while. I crave the down times and lately they have been elusive.

Gluten-free Waffles

Recently, I’ve been reading about cooking gluten-free by weight and by ratio; and it is making SUCH! A! FREAKING! HUGE! DIFFERENCE!

I’m making more consistently DELICIOUS gluten-free food.

Cooking by weight – by ounces or grams – makes such a big difference because there is such a huge difference in between a cup of twice sifted white flour and a cup of packed whole wheat flour…..throw in all the difference flours that I’ve been using in the gluten-free baking (millet, sorghum, amaranth, rice, almond, teff, quinoa – just to name a few) and if you are cooking by cups then you can have a huge discrepancy in each batch of baking that you make and more often than not you end up with some nasty crap….(I’m not trying to be offensive, I’m sure your gluten free food is delicious). BUT, cooking by weight means that if a recipe calls for 500 grams of flour – on my scale, I’ll always use 500 grams of flour no matter what flour I use or how sifted or packed it is….

Cooking by ratio is about understanding what ratio of flour to liquid to fat is required for different items…

Once you have the basic understanding of what the basic building blocks of bread, or cake or pancakes are….you can start playing by adding different ingredients in.

Now, not all of my attempts have worked out perfectly the first time I’ve tried, but I’d say that more of my “tries” are successes as opposed to failures and that is a big deal to me. I hate whipping something up and “hoping” that it’ll turn out, only to have it be a colossal flop and then having to throw all those ingredients out….not cool!

This morning, Xandra really wanted waffles and I figured that it couldn’t hurt to try. I’ve got a delicious recipe for gluten-free pancakes and figured that it couldn’t be that difficult to do waffles.

The ratio I used for waffles is 1-1-1….1 egg, 1 part flour, 1 part liquid.

If you estimate that one cup of regular wheat flour is about 120 grams – then I used that “120 grams” as my measurement.

And this was the result…..

You can see Judah’s hand in the corner. He didn’t even want to wait for the picture, but he started in on them as soon as I put the plate on the table. He doesn’t know what he can or cannot eat…all he knows is that I make delicious food and he wants to eat it. I love the fact that I can make food for him that will make and keep him healthy.

They turned out PERFECTLY. Yes, I’ve gotten a little crazy with the CAPS, but I’m pretty excited. In fact, Jon turned to me and said that my gluten-free waffles were even better than his waffles….and he’s the king of the pancakes and waffles in our house.

They were light and fluffy on the inside, and crispy on the outside; and with a little “soy-free Earth Balance” and some Maple Syrup, they were heavenly. It was the perfect start to this rainy, grey day.

Even Jeremy (who is incredibly picky) and Angelica (who doesn’t eat waffles) said that they were yummy!

Here is the recipe that I used.

2 eggs
240 grams of Flour (I used a homemade GF Flour Blend)
240 grams of Milk (I used Coconut Milk)
2 tsp of Baking Powder
2 tsp of sugar
1 tsp of salt
1/2 tsp of Cardamom
1/2 tsp of Cinnamon
1/4 tsp of Almond Extract
2 oz. of melted butter (I used Soy-Free Earth balance)

I poured about half a cup of batter between the two sides of our waffle maker and this made about 8 waffles.

Judah LOVED them…and kept asking for “more, more!”

I can’t wait to have waffles again! Maybe for dinner tonight??? Okay, probably not, but they were really, Really, REALLY yummy!

Day Two……and a half.

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

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

Doing Homework after school on Monday

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

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

Short Nap in the Stroller

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

He just crashed on Monday night

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

Here are a few things to pray about….

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

So Proud that he climbed up on the stool by himself

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

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

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

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

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

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

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

Signs that your child is a climber.

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

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

Down time for me, before bed

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

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

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

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

Not as Planned

Today is not going exactly as planned.

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

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

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

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

So we sent her to bed.

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

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

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

And then this rash shows up….

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

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

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

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

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

And I’m a bit in shock about it all….

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

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

Please pray.

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

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

It sucks.

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

It just sucks!

Beginnings

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

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

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

All in all, it was pretty amazing.

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

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

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

Angelica is still going through chemo.

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

She does this until October 2012!

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

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

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

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

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?

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.

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.