Category: Gelica

My Autistic Daughter

Today is my Darling Girl’s 22nd Birthday. I had BIG PLANS to post this earlier today but true to our chaotic lifestyle, today was chaotic.

Jude decided that he wasn’t going to school, so I attended Grade 3…..it was about as awesome as it sounds. We came home after recess and then I had to leave for an appointment with our psychiatrist regarding Jeremy moving towards adult supports. It was epic. As soon as we got home from that, I threw dinner in the oven for Gelica‘s Birthday’s Dinner and then ran out for a chiropractor appointment. We’ve finished dinner, sang happy birthday and now I’m banging this post out.

I asked Geli to share a bit about living as a autistic women. She self-identifies as autistic and I guarantee that if we knew more about how Autism presents in girls that we would have had her tested, when she was younger. In hindsight, there are SO MANY indicators but we just didn’t know. It explains SO much and would have been incredibly helpful information as we parented her.

Without further ado, to continue on with Autism Awareness Month….here is Gelica sharing about what it means to her, to be Autistic. It’s not a bad thing, or something to hide or be ashamed of. She’s incredible just as she is. She just happens to have a brain that processes things differently than a typical person’s brain…..and that’s okay! In fact, it’s fantastic!

I am Autistic.

It’s not something I usually lead with.

If I do, people are generally confused. There’s the whole “you don’t look/act autistic”, “don’t worry, I don’t think you are”, “are you sure…?” statements. I’ve gotten quite a few of these, and I only started self-diagnosing, like, 2 years ago.

But I am. It was a puzzle piece I didn’t know I was missing. But once I got that piece, so many things started making sense.

I look back at my childhood, and I just remember being a confidently quirky kid. I knew I was different and weird, but it’s who I was. So I ran with it.

But knowing that I’m autistic has just shifted a few things into clearer focus.

Horse Obsession

Like how I could wear the exact same outfit, every day, for almost 2 years of school.

Or how I was reading grade 11/12 books in grades 2 and 3. Which is frustrating when you go to a traditional school that filters what it puts in their library and you end up with 5 books in your reading level; or you can take three Geronimo Stilton books home and finish them all in one day and have to go back the very next day, because you can’t take out more than 3 books at a time

Or how I was obsessed with horses. (Mentally.) They used to actually frighten me a bit in person as a child

If you ask my mom, she has a whole list of things that actually make a lot of sense when you look at them through Aspie glasses.

I think being autistic played a huge part in me being able to stay caught up in school while going through cancer treatment

I can remember in elementary school, asking the teacher for more homework. I believe my mom even has video proof. But I can remember the homework I was getting wasn’t ever really a challenge. I had heard the information when it was first taught to us, so I didn’t understand why I needed to regurgitate the information onto worksheets. And so, I didn’t put any effort into making sure the worksheets were correct, so the teacher had no proof that I deserved more challenging homework. I was told to put the effort into the work I was being given, to aim for 100% if I was so smart. But I figured that was wasted effort, and so I just continued on with the boring homework.

But, because I wasn’t challenged or moved up a grade or anything, I was in a decent spot to teach myself grade 8 while going through chemo. In fact, I taught my tutor math, so she could teach her other stuck-at-home students

Granted, the school only gave me the bare minimum of all my coursework, and I don’t know how much of any of it actually counted towards the school barely passing me through grade 8. But I had done enough work that when I returned to school, it didn’t take too much extra effort to catch back up and raise my grades back up to almost A’s.

Currently, I think the biggest thing that discovering I’m autistic has given me, is the information.

I have an explanation.

For my introversion;
for my small-talk aversion;
for the way I think; the way I communicate;
the way I process;
the way I experience emotions and empathy.
It explains why I can not be a receptionist, but why I am amazing at my current job.

I don’t mind coming to this conclusion in young-adulthood. I think if I had been diagnosed as a kid, I would have been challenged more in school, and maybe moved up a grade. I would not have been able to keep up with my class through chemo, then.

But the one thing I think I did miss out on, was a more serious effort to teach me social skills. I seemed to always have at least one friend. But as a kid, I put no effort into making new friends. People came up to me, and made me their friend (and then they were stuck with me). So I pretty much always had someone to play with, but it was never intentional on my part; I would have been fine to sit and read by myself, honestly.

When I finished with cancer treatment, and re-entered society, it was a bit of a culture shock. I had been diagnosed as a pre-teen, when I was most upset about not being able to join a baseball team, because games were on Sundays and my parents were assistant pastors. So when I got back to school, and all that the girls were interested in were boys, make-up and grad dresses; I could not have cared less. But there was suddenly this huge, noticeable divide between myself and all the other students my age. And I suddenly actually felt like I was different.

I spent the rest of high school trying to figure out exactly how and why I was different. And nothing seemed to click just right. And forcing me to go to the church youth group was not going to suddenly fix the problem.
What I’ve come to realize, is that I was never taught social skills. I was never taught how to make friends. So now, as an adult, the one thing I wish I could go back and change, the one thing that might have made an earlier diagnosis more worth it, would be the ability to make friends. Because learning these skills as an adult, is really really hard.

I don’t know if I’ll go through with getting an official diagnosis. I’m still contemplating that. But I definitely am Autistic. And I am so thankful that I now know.

D-Day

If there was ever a night to allow myself an “out” this would be it.

But as I sit in my bed, listening to some trance music that Jon has playing while he codes, working on a project for a contract that he’s taken “on the side”………I don’t want to give myself the “out”.

It almost seems like that would be “too easy”….let me escape into some dumb show or waste more hours on my phone….which is what I did while waiting for Jeremy to finish counseling, which also happens to be when I locked myself out of the van. Would you like to hear that story? I sure hope you said yes…..

You see, we have two sets of keys for the van….my set which has the key fob attached and Jon’s set which only has a key. I ALWAYS hang my keys up on the key hook close to the front door….that way I ALWAYS know where they are. (The inference here – in case you didn’t catch it, is that keys get lost in our house, but not by me…) The only time I ever “lose my keys” , is when someone else uses them and doesn’t put them on the hook when they walk in the door.

So tonight when I went to take Jeremy to his counseling appointment…they were not on the hook, as it turns out, Geli had inadvertently taken them with her to my sister’s house when she left to go babysit. (She’s driven the van earlier in the day – totally helping me out, I might add.) Not the end of the world, cause I could just use Jon’s, right?

We drove to the appointment, got out of the van and I clicked the latch to auto-lock the doors. I paused briefly for a moment, feeling like something was weird or off; but shrugged it off and carried on. I dropped him off after connecting with his counselor and headed back out to the van….half way across the parking lot, I reached into my pocket for my key fob to unlock the doors and realized that I had Jon’s keys.

………………………….!!!!!!!!!

I panicked briefly, but quickly pulled it together and messaged Jon. While I waited for him to respond, I messaged Gelica. Fortunately, my sister’s house is not too far away from where the counselor is and Geli did in fact have my keys – which is what I had assumed – she dropped them off and YAY! I was no longer locked out, BUT….normally, I would drop a kid off and then go home for half an hour or so before coming back to do pick up…it would have been pointless to leave because I’d get home and then immediately have to turn around and come back.

So I sat in the van and wasted half an hour on my phone. So stupid…….

I’ve shared all of this lovely, ever so intriguing story because really, I’m not sure what to say about the fact that Josiah was officially diagnosed with Autism today.

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It’s not unexpected. We took him to get assessed for Autism because we really did suspect that he was on the Spectrum. Having said that, its one thing to “think” and another to “know”.

Nothing about him changes. Its exactly the same as when Jeremy was diagnosed. Jeremy is Jeremy and always has been. Josiah is Josiah and always has been. Getting the diagnosis gives us common terminology to be able to discuss his particular challenges and strengths with the professionals in his life…like his teachers, for example. It affords us the ability to communicate effectively and to put plans into place to help him succeed. It also allows for funding to help him work through and learn the skills that “normal kids” pick up without being taught.

So, I’m not upset. I’m not devastated. But, it is tough to hear that your child has a neurological deficit that affects his socializing skills and abilities. He will be given lots of extra opportunity to practice and learn skills that may not come naturally, and I have no doubt that he will be a successful young boy, young man and eventually grown man. But it’s still tough to hear that he struggles, that he will struggle and that this is something legitimate. To hear that our concerns are valid…….it’s tough.

I’m still processing and I’m hoping to be able to process through it all a little more, maybe I’ll even have a moment to process some more tomorrow.

Vacation 2014 – Part 3

Ok, so life got busy and I didn’t end up finishing posting about our vacation.

I’m sure that some of you feel like you’ve just been left hanging……..HA!!!!

Ok, maybe not so much, but……continuing on….

It’s amazing how quickly the busy-ness and chaos seems to seep back into every facet of your life, once you leave the “vacation” and head back into reality. I guess that’s the beauty of vacation or holiday time….it’s a moment to relax, settle, absorb……just breathe.


There were lots of those moments, in between the bustle of life with 6/7 people. No family vacation is really a vacation for the parents…..it’s more of a break. Once I realized and accepted that, I’ve been a lot more content on our “holiday’s”.

Jon took the kids on a number of walks and this sweet boy here…..

He brought me back something from almost every walk. He is such a thoughtful little soul.

This time he brought me back some lovely flower puff things…..I have no idea what they were and they were almost dried, but I put them in a beer bottle vase and he was so thrilled to see his gift treasured.

After the first 3 days of sheer panic, this lovely fellow settled down (as long as there were no other dogs walking past) into the camping lifestyle and was almost a gentleman….almost!!!!


He has such sad eyes.

There was SO. MUCH. SWIMMING…. and Judah even sucked up his courage enough to jump off the dock TWICE!!!!

Jeremy was determined to get this rubbermaid bin to work as a boat and although it took a fair amount of figuring to work out the ballast and balance…he finally managed to tool around a little, until it dipped a little too much at one corner and then filled up and sank….

Sometime, this little one just slays me with his nerdliness…..he is such a sweet quirky treasure.

I have no idea what he was trying to show me in this picture.

Here is where you get the best peek of my little darling….ear folded over and all…and he wasn’t swimming….just wearing the goggles because he wanted to.

Oh I love him, so!

The Skagit Valley is a beautiful place with so many interesting things to look at and experience. It feels like our own little corner of heaven on earth. These puff ball mushrooms were just growing in the campsite, but it wasn’t till we got home and I could google them that I found out they were edible and not poisonous. They were just so cute, all nestled into the ground.

Read about Part 1 of our vacation here.

Read about Part 2 of our vacation here.

Part 4 coming….

Moving Forward The Morning After

So I posted last night…..

I was tired and emotional and probably if those two factors had not ganged up on me….I may have filtered myself a bit more or even just made less typos…..maybe….maybe not?!?

I don’t know that this morning brought any new clarity with it.

I woke up with a killer headache……….at 5:30am.

Yah, it’s been a long day already and it’s only noon-ish. Did not get back to sleep after that. BLERGH!!!!

On a side note….It’s gorgeous outside.

That is the view to my right….

and this is my view straight ahead…..

She’s not supposed to be on the couch….but I haven’t exactly kicked her off.

It’s the last day of school before the Christmas Break….and probably my last quiet (ish) day for the next two weeks.

So, I’m taking advantage of it. I’m sitting. The house is a mess, and I made Judah pancakes for lunch. He is currently trolling Netflix….I believe Ninjago is the show of choice at this exact moment.

I’m currently staring at my Christmas Tree trying to figure out what I’m thinking, but again with the 50 million thoughts going in 50 million directions.

I had a few people send me private messages of encouragement and those were so nice to hear.

I wonder if it’s about perspective.

I’m in the middle of it all. From my position, I look around me and I see children who are unique and amazing and challenging in their own fantastic ways. I see the screaming and the bickering and the squabbling and the challenges to get them to do their chores and take care of their responsibilities. I see their shortcomings and I want to work with them to strengthen those areas while at the same time encouraging them in their strengths. I see these amazing individuals with really great hearts even in spite of all the challenges that we’ve faced individually and as a family……. But it’s a constant effort to keep these 5 bodies moving in a forward direction.

We were so isolated over the “cancer years” and before then….doing almost anything with Jeremy required HERCULEAN effort and sometimes it was easier to just not do anything. Again…..very isolating.

It is hard when you’ve had it said to your face that people can’t be friends with you because your child is too difficult. Or to hear from others that you shouldn’t subject your children to people because they are too much effort to have around and be around.

Just typing both of those down….I realize how brutal those two comments are. I mean, I know how brutal they are….I’ve lived though both of those said directly to my face and more. But I can’t imagine saying those things to someone…..EVER!!! I love children. I especially love the challenging kids. The ones that make you think and keep you on your toes. The extremely smart kids that say the most incredible things but require a little more attention and focus……I love the regular kind of kids too, but somehow, the ones that people seem annoyed with or bothered by….the ones that talk and talk and talk and talk and never shut up……I LOVE those kids. I want to go out of my way to make sure that they feel special and included and NEVER EVER a bother or an inconvenience….

I get it. I know how much effort it is. I live it…..EVERY. SINGLE. DAY! Jeremy has not been the easiest child. He requires some effort. Well, he requires a lot amount of effort. So does Josiah in a different way and Judah….well, he’s a 3 year old. What 3 year old doesn’t require some attention and effort. My boys require effort……I know this. I guess, it would just feel really good to feel like others “want” to be with my kids. Do you know what I mean? I think that in spite of their particular challenges or maybe even as a result of them….that my kids……all 5 of them are pretty amazing. I’d love to feel like others felt that too and wanted to spend time with them….not cause they HAD to, but because they WANTED to.

So, to those who have said something…..THANK YOU. Really! I appreciate it more than you may ever know.

I’m not sharing this in the hopes that people will “do” something. I am just trying to unravel some of this mess inside myself. Part of that is dealing with the hurts and wounds that I have or have gotten.

I realize that I’ve been hurt and I definitely have some sore, open wounds when it comes to my kids and how they are perceived and received.

And this OBVIOUSLY colors how I hear people comment on my kids.

So the school wanting to help Siah….turns into….HE’S A PROBLEM…..which I can’t even fathom….cause he’s freaking sweet kid who can read and write and wants to please…….and then I go…WHAT….WHAT do I even do with that….

How could be he a problem…..which, when it comes down to it….that is not even the issue at all.

He is a great kid….who has some quirks and may require “some individualized strategies” to help him succeed and how do we (parents & school) as a collective team help him to achieve success?

So we met, and talked through some things and I think I have a better perspective. I think we are more on the same page than I “felt”.

Which is great.

Not that the whole things doesn’t still stress me out….but the Principal….she’s an amazing lady, encouraged me to trust them and to just “plug my nose and JUMP!”

I believe this school and these people are amazing people…..I believe they truly care about Josiah. I really do believe that they want the best for him. That they want him to succeed. And so…..I jump.

I’m scared.
I’m nervous.
I’m sure I’ll need reassurance again.

But…..

I want to trust.
I want to believe.
I want to be in “community.”

and so….

I carry on…

one step after the other…..hopefully in a forward direction. 🙂

Not like an elephant

My dad used to ask odd riddles. (I would never do that to my kids…) One of the riddles went like this: How do you carve an elephant out of a block of wood?  The answer is: You take a chisel to a block of wood and knock off anything that doesn’t look like an elephant.

elephant

As dumb as that it, it’s relevant in raising a family in today’s world.  You have to know what your family is supposed to “look like” and knock off stuff that doesn’t look like that.  I guess its also like driving a car; after a while things just look like they are supposed to.  You can’t really explain why you stop before going through a green light, but something just doesn’t fit the normal and then a car runs a red light right in front of you.

This happened today for me with my daughter. Angelica has fought cancer, and now she is fighting to get back her strength and mobility.  She wants a car, she wants a job, and most of all she just wants to be normal (at least as ‘normal’ as one of my kids can be).

She is taking a class at school called ‘Planning’.  In this class they discuss all kinds of relevant stuff, like what skills will actually make you successful in the real world and how to think critically and how to prepare for a career and how to apply for a job.  This part is awesome!!!

In teaching the class, her teacher wants everything to be ‘real’. He wants them to make resumes with skills that they actually have, select a job from the local paper that they might actually apply for, write a cover letter for their tailored resume as if they were actually applying for that job, and then conduct a mock interview where you explain why you want the job and what your qualifications are.  This part is awesome!!!

The line was crossed for me when her teacher (name blurred to protect the well-meaning) told her that she couldn’t apply to be a “mother’s helper” because she can’t run after kids on a playground if they start to run away. Again, this is all in the name of making this exercise ‘real’, and I kind of understand the point.  This went back and forth a little bit, but today Angelica got this note:

gelica-job-letter

An alarm went off inside me… Now that I have processed it, written a response, received an apologetic call back from the teacher, I know perfectly well why this is bad, but I wrote the email before even fully thinking it through… I just knew it didn’t “look like an elephant”.  Here is my reply:

As per attached, I do not agree with this and I want it to stop immediately!

Angelica has fought cancer with every fiber of her being for over three years. It has been one of the most difficult things that I have seen a child go through. Angelica was very athletic and was talking about signing up for baseball before she was diagnosed with cancer. The most painful part of the treatment for Angelica was what it stole from her in terms of time and opportunity. Now she is in a place of working very hard to recover and we are constantly reinforcing for her that she can do anything.

In an attempt to make this job interview as real as possible, I believe that you have crossed a very sensitive and very real personal boundary. The facts of her “medical condition” have only been discussed at length with Mrs — and Mr —. By repeatedly questioning Angelica’s “mother’s helper” job application and telling her that she couldn’t do that job, you are 1) incorrect about her condition, 2) incorrect about what a mother’s helper job is, 3) acting in a manner that will be harmful to her recovery, and 4) breaking the spirit of my daughter.

  1. Her condition is such that she should avoid running or doing major impact, but is completely capable of it if needs be. I don’t believe that its really her responsibility or requirement to provide you all the details of her condition to take this class. If she says that she can be a mother’s helper, then you are in no position to say otherwise.
  2. We have employed a couple mother’s helpers in the past and it did not always include taking care of children. A mother’s helper may be required to do household chores so the mother (who is still in the home) can spend time with their child. A mother’s helper is not the same as a nanny as a nanny is left alone with the child and chores. If Angelica applied to be a mother’s helper to our family, and I knew what I know about her capabilities, I would hire her in a heartbeat.
  3. Angelica needs motivation to do all the physio that she is required to do. Her motivation right now is that she wants to buy a car, and she needs a job to do that, and she is doing her physio as hard as possible so that she can get an actual job as soon as possible. By making her focus on limitations (that aren’t actually there) you are taking away her motivation.
  4. Angelica, who holds her emotion in to her own detriment, has broken down in tears about this. She is getting the message from this process that she is not good enough, that she is broken, that she could never get a job. My daughter has the spirit of a fighter, and in fact she has fought through cancer to live. But it took a lot of effort on the part of us, her parents, school counselors, friends, neighbors and family to constantly encourage her to fight, to win. I did not tolerate negative reinforcement then, and I will not tolerate it now.

I believe that walking the kids through real world scenarios is VERY VERY good. I wish that I had been taught what it is to apply for and compete for a job when I was in school. I understand the motivation for making it real, but I ask you to step back from the “realism” in this area.

I was impressed when I read my own email. The teacher called me right away, immediately saw my point and has set out to amend the situation.  I wouldn’t always jump in to fight for my kids, but there are times when I do jump right away and I can’t really explain why… I just know what my family is supposed to look like and I’ll knock off anything that doesn’t look like it.

When do you jump in and fight for your kids, or let them fight for themselves?

Details

Hello Friends,

We are in the final countdown of the last days of Angelica’s Treatment.

It’s so exciting….not counting today, it’s 5 days left. YAHOO!

Some of you may have heard and I’m so sorry if you have not, but we are celebrating on Sunday September 30th from 2-4pm at the cafeteria at Walnut Grove Secondary School.

You can let us know if you need directions, but we’d love to have you join us as we celebrate the very last day of Geli’s Treatment and the first day of the rest of her life…..

What an amazing day. We are so looking forward to it.

We had a HUGE day at the hospital yesterday and I’m still recovering from it all. We left our house at 9am and didn’t walk back in the door until 5:30pm. It was all good news and we are so looking forward to wrapping this phase of our life up and starting to move forward in a life without daily chemo. We are looking forward to building strength and regaining that which was lost…..to just moving forward instead of feeling stuck.

We’d love to have you join us.

We’ll have coffee and cake available so if you can, stop by, we’d love to see all of you who have supported us and helped to carry us through these past 2.5 years…..it’s been quite the journey and we are so thankful that you’ve been there along the way helping us to keep moving forward.

Let me know if you need more details…..look forward to seeing you.

24

So, it’s been a while since I’ve done an update on where Geli is at.

It’s been a GREAT summer and we are having a great kick off to the fall, too.

Angelica is officially finished cancer treatment as of September 30th. She wakes up on Sunday morning takes her last dose and BAM!!!!!! just like that…..no more chemo.

She still does have one more hospital visit that we fit in on Monday September the 24th. It should be a super quick “in and out” of the Oncology Dept, BUT…….she is supposed to see the physiotherapist BEFORE her 11:30am chemo appt and then she has an appt with the Orthopedic Surgeon just to assess where she’s at….which we are thinking is in a much better place than she’s been in over a year…….YAH!

This summer was great. Geli has gotten stronger and stronger. She was walking (not for very long) with quite a wobble in her gait and now there is almost no wobble. She still needs to work on some stiffness and shortness in some of her muscles but it is exciting to see HOW FAR SHE’S COME!

She was able to swim and swim and swim and swim, while we were up at the Lake and even went knee boarding a number of times with minimal muscular soreness the next day. She is walking around our community to visit friends, shop or buy junk food at the local convenience store. It is SO nice to see her “just being normal”.

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Last school year, there was quite a bit of talk about enrolling her to home school for Grade 10 as she was in so much pain and we were not sure where she was going to be at this year – physically, mentally and emotionally. We even signed her up at the same school that the two boys are at, but then she decided to stay at her local school and it’s been a great couple of days for her. People have been so complimentary regarding how she looks physically and there have even been a number of double takes as people recognize her and almost always there is a comment about how AMAZING she looks or how long her hair is….and honestly….she looks amazing.

At our next appointment, they will send off the request to have her VAD (the port that goes into her heart that she gets the chemo into) removed and then……and then….

Well, Angelica will still be going in monthly for check ups for the next year. Then it will space out to 3 months, and 6 months and then once a year. She will stay on the prophylactic antibiotic for the next three months and basically as of January….Angelica will be medicine free and after she gets the VAD out, if she gets a fever……I can just treat her like a normal kid and give her some Tylenol and send her to bed with some chicken noodle soup – as opposed to stressing and heading into the hospital.

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We have been throwing around the idea of having a get together, maybe at a local park or something, to celebrate the end of this season and the beginning of the rest of her life……

We will keep you posted if and when……and we’d love to have everyone who has prayed and supported us over this time join us, if we manage to pull something together.

Thanks again for all your support. We appreciate you more than you could ever imagine……

The Countdown is On…

This past Monday we were in at BC Children’s for another monthly chemo appointment. As of today, Angelica has 4 more monthly chemo appointments left until she is finished taking chemo and only 1 of those appointments will have a sedation procedure. This is SO exciting.

There is not that much that is new or interesting about the actual chemo appointment itself! Angelica goes in. They admit her and draw her blood. They give her the chemotherapy and then we see a Dr. and go home. At this point, as long as I don’t think too closely about the poison that they are giving her, it’s all very routine. I know that it’s a necessary evil and I’m so thankful that we are here and can get the medical help, but it’s still tough…..and that’s never changed from the day that she was diagnosed until now….

What’s been different about the last few appointments has been the issues regarding the bones. The news of Avascular Necrosis/Osteonecrosis has been tough. Dealing with how much constant pain Geli was in was so hard. She had a hard time walking, moving, dressing, doing her hair, bathing……Life was pretty tough and every report we were getting was pretty much preparing us that life would pretty much be like this and possible worse…..

Things started to change after our appointment with Dr. Brown the Pediatric Surgeon at BC Children’s. He gave us news that we received as god news….as positive news and in the middle of all the crap…it’s what we needed to hear.

Angelica is doing so much better. It’s not all butterflies and roses, but she is in less pain. She’s tired and her muscles are sore, but she is working SO HARD!

Geli is doing about an hour and half of physio a day…….on her own…..or mostly on her own…

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It’s pretty incredible. She is doing exercises 3 times a day – morning, after school and before bed. It’s making a HUGE difference. Instead of walking around like someone who is 90 years old, she is walking and standing more like a teenager. She is standing straighter and walking straighter. While there is still a bit of a wobble in her step, she looks AMAZING!

It’s exciting to see how far she’s come. Sometimes, it’s hard because she can’t see the change, but to us, looking at her and seeing what she can do now that she couldn’t do a month ago….the changes are astounding. For example, she couldn’t stand up in the kitchen to help with dinner or dishes for 15 minutes without being in pain and so tired. Now, she can do at least an hour. On Monday, she had the sedation procedure with the chemo into her spinal fluid (a Lumbar Puncture) and there has not been one day in the past 2 years that she has done anything other than lay around on an LP day. On Monday, she wanted to walk up to the store a few blocks away from our house to get something that she really wanted for dinner. It blew me away. So SO much different than a month ago……she also has SO MUCH MORE range of motion in her shoulder and elbow and it’s making a difference in the daily living things that she is able to do, like reaching for things up on shelves in the kitchen and doing her own hair.

She still requires help, but all of this change…..it’s only after ONE MONTH of exercise…..The physiotherapist at the hospital said she was doing incredible and our nurse COULD NOT BELIEVE how amazing she looked even all groggy after having the LP. She looked healthy and happy….in fact, more than a few nurses mentioned how great she looked.

It’s so great to see positive change and forward movement in this situation. We have our next appointment with the Orthopedic Surgeon on Tuesday June 14th….I’m looking forward to Geli going in and being in better shape than she was the last time.

One other AMAZING bit of news, is that the Physiotherapist at BC Children’s suggested that Angelica go THERAPEUTIC RIDING…..as in HORSE RIDING. Any of you who know Geli, know that she has been in love with horses for as long as we can remember. I have lost count of the number of horse calenders, horse bedding and other horse paraphernalia that Angelica has collected or wanted to collect over the years. To say that she was a horse fanatic is putting it mildly. Unfortunately, horseback riding has not been something that we’ve been able to do, but it has been something that Geli has wanted to do forever.

To have the Physio suggest that as another form of physio that Geli could go riding…..well, it’s pretty huge. Just talk to Geli about it and see the smile on her face when she talks about it….she has this amazing smile that just lights up her WHOLE ENTIRE FACE. She is SO excited! We’ve contacted the stable that does Therapeutic riding out here in Langley and have sent out referral forms to her Dr.s to get them filled out and as of last night we received them back so now we forward them to the stable and then set up a time and …………she starts riding.

What an amazing opportunity that is so perfectly picked just for her. What a blessing! We can see God’s hand in this.

There are other emotional side effects from this whole journey that we are working through and it can be tough at times, but there are a lot of things that are going so well. We keep praying and believing for miracles for Angelica’s physical body. It is so encouraging to be at a place where she rarely feels pain as opposed to the constant pain that she was in.

Thank you for your prayers, your encouragement, for your love, for your support. We couldn’t have done this or carry on without your support. We are so grateful to all of you.

5 Cycles Left

Angelica has 5 cycles of chemo left until she is FINISHED.

September 30th is the day that she stops taking chemo. It seems SO FAR AWAY and yet…..we only have 5 more cycles of monthly chemo to go until that day comes. It’s pretty exciting to think that when the new school year starts, she will have less than a month of chemo left.

Today we headed in for a monthly chemo appointment. We also needed to meet with the Physiotherapist as well as get an X-ray of her left shoulder. Initially, we were going to be getting an ALL DAY infusion on a drug that would help with the pain that she is feeling in her knees, but we changed our minds on that particualr drug after meeting with the Orthopedic Surgeon last Thursday.

Let me back up…..basically, since the Dr’s Diagnosed bone death back in January we haven’t had a really GOOD appointment since then. We’ve had a number of appointments but all of them have been very emotional or full of bad or depressing news. We have tried to stay strong and positive, but with each appointment seeming worse and worse, it’s been so SO tough.

We had a BIG misunderstanding with the Rheumatologist back in the beginning of April and then another BIG meeting with our Oncologist in the middle of April and while it was better….things were still confusing and sounded so……so……..so dark and depressing and negative. It was suggested that we start one drug to help with the pain and we thought about it and planned to go ahead. The Dr sent us a bunch of articles to read. Some of the info was good and some was not so encouraging. Isn’t that how it going with most meds??? Anyhow, We were supposed to start that drug today. It was possible that it might give her bone and joint pain and well as a fever and flu like symptoms like aches, fever, chills and nausea….sounds fun, eh? And, it would have taken all day for it to run…..awesome!!!! Not!

We met with the Orthopedic Surgeon last Thursday and it was a GREAT meeting. He believes that Geli’s case is a mild case of bone death and that she is still in the healing process. He believes that she will get stronger and stronger and that the pain should lessen. He also mentioned that as she gets stronger, that she should also have more mobility as well. These were also very positive things. He mentioned that it is possible that she may not need joint replacements until she was 40 years old. While that is earlier than an average age for joint replacement, it is WAY BETTER than being in so much pain and discomfort that she would need it in the next two years…..He also suggested against the medicine that we were considering because among other things, it can make the bones brittle and more suceptable to fractures. As well, if there are negative side effects, those can possbly stick around for a long time…..a life time even and well….that would not really be cool. Would it?

Of course, this is all a natural, medical opinion and we are still praying for and hoping for miracles. Just going to the specialist felt good. We walked away from the appointment feeling very hopeful. And that is SUCH A GOOD THING!!!!

We go back to see him in the middle of June.

Masked up

Today we had our regular monthly appointment and other than it being two straight hours of running around, it was a FABULOUS day and a GREAT appointment at the clinic. There was no traffic to start and we made it in with enough time that we weren’t rushing in from the parking lot. We went into the clinic, and Geli had to mask up as she’s had a nasty virus that’s been making it’s rounds through the kids. We were sent to the back of the clinic which is the long term appointments, but we stopped to talk with our nurse because we were not staying for the extra long drug. While they tried to sort out the confusion, they sent us down to Radiology to get the x-ray that the orthopedic surgeon had ordered for Geli’s shoulder. Geli changed into one of those cute little gowns that tie up in the back and we were to be up next when our nurse came and told us that physio was waiting for us. So we left Radiology and headed down to the PT department. They also felt that both her elbow that seems to be locked and her shoulder that is difficult to move are both from muscle tightness as opposed to being unable to move because of problems with the bones. This is a very good thing. Geli was given a few exercises to work on and we have an appointment that co-insides with her next chemo appointment.

I am hoping that with one month of focused effort that she will start to see some amazing and encouraging results in her physical body. We will be doing a lot of physio over this month and so if you think of it, you could pray that she will stay encouraged to keep on going and that she will see some results sooner rather than later.

After we met with the Physiotherapist, we headed back to the oncology clinic to get her blood drawn so that we could get her counts, as well as get her Chemo drug for this month. After that, we headed BACK DOWN to Radiology to finally get her shoulder x-ray-ed. The results from that will go to the Orthopedic Surgeon and then we will see him in the middle of June. When we finished with the x-ray, we headed BACK to Oncology to meet with Geli’s Oncologist.

It was a completely uneventful appointment. All of Geli’s stats look good. Her white counts are elevated a bit, but that could easily be explained by the virus that she is fighting off. She checked Geli out, increased one of her oral chemo drugs by just a tiny bit and sent us on our way.

All of that happened within 2 hours…….it was a FABULOUS day!

We have just recently made a few changes within our family and house and I’m hoping that those changes will have a more positive effect on all of us. I’ll hopefully be back tomorrow with an update about what’s going on with us……

Miscommunication and misunderstanding……

Yesterday was another tough day.

We had our monthly chemo appointment in at Children’s on Monday and we got talking with our nurse about the what we “thought” was in the wings for Geli as far as knee replacements and surgery and time lines and the more we talked, the more it seemed like something just wasn’t right…..or that something was missing.

Long story short….what we thought was in the works for Geli regarding her knees and surgery and stuff….well, the reality is way no where close to what we had thought we understood.

There is a whole bunch of information that we don’t know and we are going in this coming up Wednesday for a meeting with our oncologist, our nurse clinician Jon, I and Geli.

It’s so frustrating. Geli has been in pain everyday all the time for a long time now. It’s wearing on her. It’s horrible for us to see her in pain.

I fell apart yesterday. Couldn’t stop crying. Don’t really have the energy to get into it all right now, but the bottom line…..something has to change.

We are praying like never before….for a miracle, for answers, for something.

Could you pray for us? We are beyond exhausted. Every blow feels like a HUGE hit and we are finding it harder and harder to cope with the blows and ever more difficult to recover from them.

I’d love to be able to explain a bit more, but I just don’t have it in me.

Pray for Geli
Pray for Jon and I
Pray for the kids

Thanks.