Family – Page 13 – xangelle.com

So Much More…

Things have been quiet around this here blog, not because of a lack of things happening, but exactly the opposite…

To make a looooooong story short(er), Angelica’s counts are low….like really REALLY LOW! This is good and bad.

It’s good because the meds are working the way they should, and Geil’s body is responding to the meds and it’s bad because she is at a much greater risk for infection right now.

The infection in her feet is still present and right now it’s bothering her. There is infection in the tissue surrounding the toenails but it’s not in the blood which is a good thing. Her feet are hurting and she does not really have enough “infection fighting cells” to get rid of the infection. This means that we need to go back onto antibiotics to try and back the infection down so that it stays in check.

We’d love prayer that her toenails would grow out quickly and not be ingrown anymore. That the infection in the tissue would be completely gone and that the new antibiotic that she’s on would not affect her stomach. We believe that it was the original antibiotic that caused the massive stomach pain, nausea, vomiting and the subsequent weight loss…..

I’m feeling quite nervous about putting her back onto oral antibiotics but the alternative is hospitalization and no one wants that for her….especially over toes.

We really need the whole issue with the toes to be resolved and the Dr believes it could be 2-3 months before her toenails grow out sufficiently to make this a non factor…..that’s not cool.

Aside from that, we are feeling a bit discouraged and feeling like we’ve been hit one too many times recently. We’ve had to fix our van, our washing machine is showing signs that it’s gonna bite the dust shortly, Jon lost his phone a few weeks ago, and on Sunday morning he put his computer on the roof of the van while he got something else ready, and then somehow managed to drive away with it still on the roof. Our minds have just been too full and overloaded with too many things. It stayed for the ride until the highway and then crashed at a 100 kilometers per hour. Needless to say, it did not survive the crash and he lost a HUGE project he was working on for his Programming Business.

He had some of the stuff on his laptop backed up but not everything and while nothing is irreplaceable….it’s gonna take time and energy, both of which are on short supply at this point. It also makes you feel a bit frustrated and stupid when you make mistakes or cause accidents like this….ones that could have been avoided or that you wouldn’t normally make but because you are trying to juggle so many different things……..

There is just so much more to deal with, to talk about to share, to go through, to do…..there is just so much more, and so we ask for your prayers for us all.

Feeling Ordinary

I had titled this post “Just Being Normal” and I changed it. I don’t feel normal. None of this feels normal and to be completely honest, I’ve never ever really felt “normal” in my whole life. Growing up, my family was fun, exciting, LARGE, unique, weird……anything BUT normal. I don’t even really like the word, and as you’ll see further on down this post….we’re still not “normal”.

My sister’s invited me to go and spend Tuesday with them, shopping. They were thinking about going to the stores out in White Rock, specifically the Children’s Place and H&M. I really needed to pick up some pants for Jeremy and Josiah. Those two have out grown and worn out every pant that they own. And yet, I really wasn’t sure if I had the energy to go.

I feel very similar to how I felt after Nathaniel died and then when we kept losing the babies. I felt like I’d been blasted with a shock wave and it affected me mentally – I couldn’t think properly; it affected me physically – I was so tired and even thinking about doing anything beside just getting through the day, exhausted me; and it affected me emotionally – I had very little emotional energy to spare on anyone or anything and on good days, even just breathing was hard. Then we’d go through the mental, physical and emotional roller coaster of getting pregnant only to be pounded again with another shock blast when the babies died. Each time we were “struck”, I felt weaker and weaker and less able to handle myself and to deal with my children and those around me.

Somehow I managed to scrape the energy and courage to try again and again, (The desire to have a baby was greater than the fear of getting hurt again.) but I was only surviving at that point. When we got pregnant with Siah, I felt so tense and on edge for the entire 9 months because I was just waiting for the next shock wave to come and rip through me. It took about 4 months after he was born for me to feel like I could breathe again, and even then, I was still nervous and on edge hoping that there wouldn’t be another shock wave.

Gradually, as time went by, I felt stronger and stronger. I could physically handle doing more things. Mentally I had more energy available and was able to process life at a faster, more “normal” rate. Emotionally, I felt stronger too. I didn’t feel 100% but I definitely felt WAY better than before where I was only barely existing from one moment to the next, and only barely doing the absolute minimum required to get us through the days…..mind you just about anything was an improvement from that.

Right now……I feel so much like I did back then and I hate it. I do believe that based on previous experience, that I will not feel like this forever, but this….the way I feel right now is brutal. I do feel like I’ve been blasted with a huge HUGE shock wave. I hate feeling like I have NOTHING in reserve – mentally, physically or emotionally. I feel like I start my day with 3 tokens worth of mental, physical and emotional energy and by 10:30am those tokens are gone. Between things like disinfecting the bathrooms or the railings, handles or light switches, or dealing with squabbling children or emotional children or watching my baby barfing up her entire breakfast that we just spent 2.5 hours coaxing and nagging her into eating because we are worried about the 15lbs that shes lost in the last 2-3 weeks, or trying to put together a plan for dinner let alone attempt to come up with a weeks worth of meals and then to be able to come up with a shopping list AND then to go shopping. That’s not even mentioning trying to “connect” with my husband or my kids, individually. I am either running on a deficit or things just don’t get done.

So when my sister’s asked me to go out shopping with them….all I could think about was that I had no energy to even pack to go for a day of shopping, let alone trying to “shop”, and be able to nurse the baby and walk all over the place…..it just seemed like a HUGE amount of effort and I wasn’t really sure if the effort required would be worth what I might get out of it….

I’d get to spend some time with my sisters and their babies. I’d get to hopefully score some pants for the boys and possibly on sale. I’d get to be away from my house and the cleaning and the children. I’d get to get away from the “cancer” for a moment. I’d get to step away from everything and just be a person with a baby, shopping for sales with her sisters. I’d get to be “normal”…..sort of.

It’s hard to walk away from something that is a part of you and weighs you down like you are wearing a lead jacket.

To be completely honest, the biggest draw for me was being able to get away from the house, the cleaning, the cooking and the children for a few hours….that might sound horrible, but aside from going to 4 exercise classes, I’ve not been away from “all of this” since June 16th…and I felt like I needed the break even at the expense of the physical, mental and emotional energy that I’d spend.

It was a great time with my sisters. I managed to pick up some clothes for the boys and I got a bit of a break from everything.

It was a bit of a crazy day.

This was how it started…..

Yah, that’s my son in the middle screaming. He kept that up most of the way from Langley to Coquitlam and then to White Rock. There are funny story about that but for another time….

You’d never guess from this picture, but Zach spent a good part of the trip screaming his head off.

This was a brief moment of peace and quiet.

This little darling was the best behaved out of the three boys, but then, Jack’s also the oldest of the three boys, so what would you expect…

There were moments on the van ride that Judah was quiet…..Here is one of those moments…it only lasted about as long as it took to take this picture. He doesn’t like his car seat and really, he just LOVES to be held.

We hit the stores and while we got no pictures of us shopping for clothes for the kids, we did manage to snag a few pictures of us at the Indigo Bookstore.

I tried to get a picture of myself, and the bathroom mirror seemed as good a place as any. I put Judah in my Moby Wrap because it keeps him snuggled and close but give me some hands free.

As we were leaving the store there was a huge mirror and we were trying to get a picture of the 6 of us….

Someone offered to take a picture for us….

We continued on outside and we wanted to get a few more shots in case those ones didn’t turn out..

This is what happens when you try to take a group shot….by yourselves!

Hmmmm! Head cut off and crazy eyes….nice!

Aaaaaaargh! If only Jack were looking….

Zach figured it might help if he held his mommy’s face in the direction of the camera….

Apparently I needed a little help from Zach, too!

The boys were mesmerized by the toy that we were shaking to try and capture their attention.

At this point, Judah woke up and started screaming……..this is the last photo we took.

All in all, it was a good day. I imagined that the three of us sisters with shaved heads must have looked odd and we did have someone come up to us and ask if we were Buddhists. I thought that was pretty funny. My hope is that maybe if I stretch myself that I’ll be able to get my energy back sooner as opposed to later.

Regardless, I got a break and got some shopping out of the way. At least that’s a step in the right direction….

High Tide and Low Tide

It’s been almost a week since my last post and we’re still trucking along.

The chaos hasn’t really settled down as much as it’s just shifted or changed direction.

Geli has completed the first two weeks (out of 8 weeks) in this second stage of treatment. She was in the hospital yesterday for another lumbar puncture (with accompanying chemo into the spinal fluid) and then received one chemo drug through her IV and another chemo drug that gets given by two shots, one into each thigh.

She walks away from the day with a sore back, a headache, two thighs that feel like they’ve been kicked by steel toed boots, an upset tummy and some serious fatigue. She woke up this morning feeling really off and has spent the day on the couch or hunched over a bright shiny silver bowl. I’ve given her a substantial dose of Codeine and she is sleeping right now.

She’s doing well considering what she’s dealing with, but it’s not all sunshine and lollipops over here.

I had a really bad day on Sunday. It started out okay and somewhere along the line I ended up feeling completely overwhelmed by everything and then spent the rest of the afternoon/evening crying. If all of “this”, the emotions swirling around everything comes in waves, then Sunday was definitely a low tide day for me. I managed to wake up on Monday morning and things were a bit better, but when the evening rolled around and I needed to decide if I were going to my exercise class or not……I forced myself to go as I need to go for emotional and mental reasons as much as I need to go for physical reasons.

I find that if I can go and work so hard that I can’t really think or focus or concentrate on anything else…..it gives me a break from everything and then I feel so much more able to jump back into the thick of everything and deal with it all from a position of strength…..and so I went. And….surprise, surprise! I felt a lot better when I was finished.

We have a quiet week ahead of us.

This second stage of Chemo is a total of 8 weeks. There are 2 weeks of intensive everyday treatments, and that’s followed by 2 weeks where she’s only scheduled to be in at the hospital for 1 day per week. This week is the first of those 2 weeks. Then we do two more intensive every day weeks and then 2 more weeks of 1 day per week.

Here are the most current prayer needs and praise reports.

Angelica has done amazingly well as far as side effects go and we are so thankful for your prayers. Some of the most common side effects from the drugs she’s currently on are mouth sores, nausea and vomiting, fever and low blood counts. Geli has had very little nausea and has only had one real episode of vomiting. She’s had no mouth sores, or fever, no real other side effects and although her blood counts are low – they are not as low as they could be.

These are amazing things because she could be feeling SO. MUCH. WORSE. than she currently is.

We would love prayer that she would stay physically and emotionally strong, and that her tummy would stop hurting. She says that she doesn’t feel sick and nauseous most of the time, but her tummy hurts or aches and it would be nice if that would go away. Also, we would love prayer that she would recover quickly from her big day yesterday and that the headache that is bothering her would go away.

Jon and I could use prayer that we would stay emotionally and physically healthy and strong. It is tough to deal with everything that is on our plates right now. Also that we would have time and opportunity for each other in the middle of all this craziness. It’s difficult to find the time, and resources to be able to invest in each other at times like this and yet even if everything lines up well….often we are so exhausted that it feels like too much effort to go anywhere and do anything.

Xani is struggling with all the emotions that she is feeling. She tends to feel extremes when it comes to emotions and has been swinging between stuffing her emotions and exploding with her emotions…..both extremely unhealthy ways of dealing with her emotions and so we are trying to walk her through sharing her emotions in a healthy way and at the same time dealing with the fall-out of the stuffing/exploding cycles.

Jeremy is Jeremy! He has so many thoughts and ideas racing through his head and often it is exhausting trying to keep up with him. Alternately, he is frustrated with us that we don’t seem to get or understand or that we just don’t have the time and energy to put ALL of his ideas into practice. It feels like we are in a constant tug of war with him mentally and verbally. It’s hard for him and us.

Josiah….well, lets just say that Josiah turned 3 on August 4th and I still haven’t written odes of love and adoration to him as I reflect back on the last three years of his life. That may or may not have something to do with the fact that currently……on any given day……I’m about ready to strangle the little bugger. He is my love, my darling, my miracle baby and yet…..

The whining, yelling, screaming, constant arguing, climbing, getting into things…..well, it can all be summed up by saying that he is testing his boundaries in a BIG WAY. Normally, this would be okay and we’d just set the boundaries and enforce them repeatedly until he figured out what was acceptable and what was unacceptable…..with everything else going on and the exhaustion that is a result of everything else going on…….lets just say that our consistency is not as it should be. I honestly think that he senses that things are not “right” that they are not as peaceful, calm and consistent as they have been and the chaos is affecting him negatively much in the same way that it’s affecting everyone else.

We will all get through this, and we keep telling ourselves that its just a season, but if you are wanting to pray….this is what we need prayer for right now…

To everyone who is praying…… We appreciate every single prayer.

The Wig Must Choose You…

Last Tuesday, we had our first ever head shaving party, we were trying out all the different wigs and scarves and hats that we owned, were lent or had been given……and some how someone mentioned that the wig must choose you.

There is this one wig that pretty much NO ONE has looked good in….and other wigs that have looked amazing on different people.

So that turned into the catch phrase and it has carried forward….even on the day when Geli went and choose her “real” wig. She looked at a few. Even had a hard time choosing between different styles an colors. She tried one on and it looked pretty good, but then she tried one more one and that was it. Whether she chose it, or it chose her…..it was just “The Right One” and when we do finally get to pick it up…supposedly later this week…we’ll show you just how AMAZING she looks. I think she looks pretty amazing with or without hair, but there was just something about this wig…the color, the cut….it’s totally awesome.

Well, Wednesday morning, last week – Nana Karen showed up asking for her hair cut…..

Here is mid-cut…..

Shortly after Nana’s cut was finished…Aunty Chelle showed up…

Aunty Chelle is pretty goofy and here she is with the typical shave down the middle….

And here she is rocking the massive comb over….

After the head shave was finished, Aunty Chelle tried on a few wigs and unbelievable…she rocked the wigs….even this lovely green one. This is the wig that looked good on NO ONE and yet….aside from the crazy eyes, she rocks the green wig…This wig obviously chose her….

Even the crazy pink wig looked awesome on her….

Here is the group shot at the end of the massive hair cutting session. Geli’s getting pretty good at the close head shave.

What is and what will be

When we first sat down with our doctors and nurses and coordinators and the social worker all assigned to us at the first diagnosis, they talked in detail about what we were about to face.Â They talked a lot about the first phase of treatment and that there were four (or more) phases. To be completely honest, I kind of blanked out when they finished off the first phase.Â It was all I could do to focus on the next hurdle; the next goal. As we made it through that phase, it was very much like they prepared us for (except they said most kids experience at least one side-effect; they didn’t say we get to try them all).

Thank you for praying:
We made it through the first stage (Induction), and met all the bench marks.Â Angelica has stopped the steroid that was causing the diabetes, and has also stopped having diabetes, she finished induction with 0.0% leukemia cells in her marrow, and her blood counts have come up enough to start phase 2, and most importantly her numbers are up enough that she can tackle a few public outings.

2 Days of Summer:
With Gelica spending most of the first month in the hospital and starting phase 2 (Consolidation) on Monday, she effectively gets to enjoy summer for 2 days. We’ve gone to a movie that we were supposed to do for Alexandra’s birthday with her friends (which still hasn’t happened) and today we are going to a pool and having a BBQ.Â When Angelica was at her weakest, I told her that she would be feeling better and that there would still be some summer left to enjoy, and she replied that if she could go do Rick and Linda’s pool just once, then it would be ok.Â It’s now or never (probably).

Consolidation:
Where induction is aimed specifically at the marrow, consolidation is aimed at eliminating leukemia cells throughout the whole body. Leukemia cells can hide in the body at levels that are currently undetectable. So it is a treatment based on theory and years of statistics. There are no actual benchmarks to aim for, as there is nothing big enough to test for, but nonetheless, it is an intense therapy.

Consolidation consists of several drugs, most of which are various forms of chemotherapy.Â It will bring her marrow and her blood counts down again, which is why Angelica needs to have reasonably good counts to start with (they are not up to normal, but are just considered low as opposed to very low).Â The main side effects to look for are mouth sores; diabetes is not a side-effect of these drugs. The biggest issue we will face is the practicality of driving in and out of the hospital with this treatment.Â There are a lot of visits scheduled, most are in the middle of the day and there are four other kids (one of which is a new-born) and work and such that have to be worked in and around.

We have to go into the hospital for a full day, then three hour-long visits over four days for two weeks, then two weeks off, then two weeks on, then two weeks off…Â This phase is scheduled on a calendar over 57 days, bringing us to September 20th.Â Angelica will likely not get to school at all in September, and this is her first year of high-school, so she’s a bit disappointed about that.Â She will likely have blood counts that are low enough through this time to keep her and our family for the most part in isolation.Â This is not a fun road.

Please pray:
We need prayer for the treatments to go well, and for Gelica to not get any sores. We need to really pray again that she doesn’t get any infections during the course of treatment so she doesn’t have to stay in the hospital. Pray for peace and good communication in our home. Pray for schedules to coordinate and for there to be enough hours in the day to get everything done that needs to get done.

Thanks, Jon.

PS: A special thanks to the Tulloch family. Even though I haven’t gotten to meet you yet, knowing that we are in some way connected to a family that has gone through this not that long ago, and successfully is a great encouragement.

That’s How Strong My Love Is

This was an e-mail sent from my sister Debbie to Angelica. I’ve asked both of them for permission to share it with you.

So, I had an appointment to get a perm this weekend. I’ve always wanted some wave in my straw-like, straight hair, so I thought it might be a fun thing to do for the summer. I didn’t realize Geli’s hair loss was coming on this soon.

When Geli first was going thru this whole cancer process, I told my husband that I would want to shave my head when the time came for Geli to do it. In my mind, I can’t imagine having to go thru everything that she is going thru and not even having a choice about it. At least I could choose to loose my hair. But when the time came, I was a lot more nervous than I expected. Would those around me still think I was beautiful, would my husband still want to hold me, would my infant son still recognize me…I know how I look in a swim cap and SEXY definitely comes to mind. (NOT!) But, it is just hair. And…I have the choice.

My beautiful niece, you did not choose this path, but you are weathering it beautifully in your own unique way. Geli, you have always been a “walk to the beat of your own drum” kind of girl. You makes crazy cool fashion choices, and you aren’t swayed too much by the hype of most teens today.

As an adult, with all my grown up-ness,reasoning and “maturity”, I still have fears or concerns. I can’t imagine what it would be like to experience this as a teen. But again, it’s just hair. And…I have the choice, you didn’t.

Geli, when you were a baby, I taught you to scream for joy when you saw someone you loved (much to the delight of your mom). Sweetheart, now you teach me to scream out for those I love. Whether it’s screaming out prayers of injustice or encouragement, or screaming out fears or shrieks of joy. I guess i want you to know that in the same moments we can scream out for joy, we can be screaming out for fear or pain as well. And that’s OK.

Geli, I want to walk this road with you as much as I can. But when it comes down to it, this is your journey. We stand along the way with you cheering you on. Sometimes we walk a bit with you, sometimes someone like your mom or dad carries you, and sometimes you are on your own. But in this crazy act, we join you.

I guess, Geli, by supporting you this way,I want to let you know that you are loved, beautiful, gorgeous, talented, and that you are brave and valiant. And in all your strength, it’s OK sometimes to feel nervous or some fear. Because we make the choice not to live in that fear. And we know that perfect love cast out all fear, and Geli you are surround by “perfect love”…and a whole lot of our love too!

Needless to say, I called the salon to cancel the perm. 🙂

peace.
love.
shalom.

Aunty Bubbie

That’s How Strong My Love Is

If I was the sun way up there
I’d go with love most everywhere
I’ll be the moon when the sun goes down
Just to let you know that I’m still around

That’s how strong my love is, oh
That’s how strong my love is,
That’s how strong my love is, baby, baby,
That’s how strong my love is.

I’ll be the weeping willow drowning in my tears
You can go swimming when you’re here
I’ll be the rainbow when the sun is gone
Wrap you in my colors and keep you warm

That’s how strong my love is, darling,
That’s how strong my love is, baby,
That’s how strong my love is, oooh,
That’s how strong my love is.

I’ll be the ocean so deep and wide
I’ll get out the tears whenever you cry,
I’ll be the breeze after the storm is gone
To dry your eyes and love you warm

That’s how strong my love is, baby,
That’s how strong my love is,
That’s how strong my love is, darling,
That’s how strong my love is,

That’s how strong my love is, so deep in,
Well, that’s how strong my love is
So much love, yes so much love, oohh,
Yes so much love, yes so much love,
Anything that I can do, I’ll be good for you,
Any kind of love you want, I’ll be with you….

The First Cut is the Deepest

Well, yesterday was a momentous day in our house.

We had the first ever head shaving party.

When Geli was diagnosed with Leukemia, the Doctors and Nurses had mentioned that Angelica might lose her hair as a side effect of the chemotherapy. She seemed to be okay with that, but then…it hadn’t happened yet and so we figured that we’d just deal with it, if and when it happened.

Well, Geli managed to make it all the way through the first month before her hair started to thin and then….it started to thin quite rapidly.

The biggest issue was the hair falling out and sticking to her body. You know that feeling when you’ve got a stray hair stuck to your back and you can’t quite get it off….now imagine 50 hairs all over your arms and back and neck and inside your shirt….not fun eh?

And so, yesterday I asked Angelica if she’d like to shave my head so that she could see what it would look like, if she were to shave her head…and she said yes!

So, we grabbed the buzzers, took a picture to show the “before”……

….then we cut the pony tail off….

……and then started shaving….

We had lots of help…..

Lots and LOTS of help….probably more than we really needed,but hey! Gotta pay attention to the details, right?

And then we moved on to Angelica….

And Siah decided that he wanted to get in on the action…

But trying to shaving a moving target……

Well, lets jut say that his head shave is a little less than perfect…

We finally remembered to take a good shot of Momma and Geli…

Xani came home after dinner and decided she wanted in on the action…

So, here was the before shot…

And here we are after it’s all done…

And later on, Papa came over to join in…

Here we are listening to him ask for just a little off the edges…

We figured while we were at it, we might as well see what Papa would look like with a little male pattern baldness…

We needed to rock star it out a little…..

Here is the official Head Shot…

But…..the best part of the whole day AND night was when Pap put on this wig….

And watching him do the head shake and hand flick made it apparently obvious that he’s had long hair in the past….

He looked like he’d just stepped out of the Coast Capital Banking Commercial….it was AWESOME!

We had a good day with lots of laughter and although it could have been a tough day….I think it turned out okay.

We will be adding pictures of Nana Karen, and Aunty Chelle as soon as download them off the camera….they came over this morning to add their beauty to the mix……

Everyone looks so beautiful……its amazing how much stock you put in things like hair, but to see that hair only adds to your beauty…it doesn’t make or define you as beautiful…..Beauty is who you are!

Firsts and Traditions Carried On

It’s been a tradition since April 4th, 1997.

That is the day that Angelica was born and when Jon gave Geli her first bath.

Some wise man talked to Jon about giving the babies their baths as it was a way that “he” could bond with his babies..ya know, seeing as he didn’t have boobs and wasn’t able to bond with them the same way that I could…..

And so, he jumped right in there and he did most, if not all of the baths for our kid when they were babies…..I find the baths to be a bit scarey as the babies are a bit like rubbery wet noodles……

This whole situation has required some give and take on our part and while we’ve been separated as a family for almost month…..some things are too important and can have the extra effort given to make them happen.

And so,getting back to the whole first bath business….

I had to beat the nurses at BC Women’s Hospital back with a stick as they kept offering to get a bath for me to bathe Judah in and I wanted to give Jon the opportunity to give Judah his first bath. (I didn’t really have to beat them off, but they did offer a bath a few times and I very politely declined.)

This last Thursday, on Judah’s 2 week birthday we were at home all together and we whipped out the baby bath and Jon was able to carry on the tradition……HOOOOOORAY!

Judah’s a pretty chilled out little dude and I wondered how he was going to handle his first bath. All of our kids have had different reactions to the bath. Some loving it, some hating it, some screaming the entire time and some just going to sleep in the middle of the bath.

Judah just stayed pretty true to his nature and just laid there all relaxed while Jon bathed him. No screaming, no flailing, no startling, not bothered at all, one bit……

It was a bit of a family affair. I think that if Jeremy had been able to fit that he would have jumped into the bath with the baby. All of our kids are quite the water bugs now and if Judah’s first bath is any indication – he seems like he’ll fit in with the rest of the family quite nicely.

I’m just glad that we were able to carry on this little tradition. It’s not that big of a deal, but sometimes it’s the little things that make a difference. I know that Jon was happy that we were able to make this “first” happen.

A Little Catch Up……with pictures

You might think that caring for a newborn in a hospital shouldn’t be that difficult and well….its not difficult – it’s just challenging.

Either I hold him or I put him down on my cot or Geli holds him, but really I don’t like to let him cry or fuss too much as I don’t want to bother the nurses or any of the other patients on the ward and so the majority of the time…..I’m holding Judah.

Which, to be honest, I’m not too upset about, but it really means that there is almost nothing that I can get done that requires 2 hands…..but I am getting really good at doing mostly everything with one hand…..mostly everything. Somethings just require focus and concentration and we’ll just leave it at that………

About 2 weeks ago, Angelica did something to her left hamstring and it spasm-ed and pulled all tight and totally confused the Dr’s and nurses and physio-therapists……everyone was wondering if it was something related to the chemo meds, but in the long run…we’re thinking muscle spasm as it’s been able to be worked out…..mostly!

The physio-therapist came and suggested some exercises…..this was about as far as she could bend it….

And so as not to hurt it more and so that she wouldn’t torque her body trying to compensate for the hurt leg, they suggested she use crutches for a while….

I will admit that I was a bit worried as she had been kind of dragging the leg like it was dead or like she was the Hunchback of Notre Dame…..but the crutches have been given back and aside from a little bit of tightness which she is working on stretching out….it’s almost as good as new. We are so thankful that wasn’t a big deal.

The nurses here seem to be so amazed at how independent and responsible that Geli is. She is really taking responsibility for her own health in so many ways and gets up and makes her own meals when she is hungry….that’s the one that seems to really amaze people. I just figured that it was normal for a 13 year old girl to know how to cook…..seems normal to me, anyway?!?

She made perogies the other day….her favorite, but because her body is currently in a diabetic state – they are not something she can have very often…which is very sad!

Most of the time when I have to run to the toilet….Geli holds Judah and is typically able to get him to settle down if he’s a bit fussy. She’s an AMAZING big sister….

Last Thursday was the first time that we had all been home together as a family of seven….since our lives changed on June 16th…..it was so nice to all be together, even if only for a few hours.

Headed Home in the Van…Dad had run to Starbucks quickly!

Geli really wanted to have a barbeque lunch and asked that we pick up some chips because you can’t have a barbeque without chips…..

Making Lunch

She took her portion and then Siah claimed the rest of the bag as his own and valiantly fought off having to share with the other kids….little brat!!!

Jeremy worked on keeping things real by parking his butt in front of the Computer pretty much the whole time….

I don’t know how we missed out on Xani, but she was there….I promise!

and Nana got in some sweet baby cuddles….It was a pretty hot day….hence the naked baby!

The time flew by WAY TOO FAST and we hd to head back into the hospital. It was so nice to “BE” together in the comfort of our own home…..and hopefully we’ll be back together again very soon!

And now, my littlest baby is starting to fuss and I must go and get him….

Hospital Time

We’ve learned through several encounters with the medical system that projected dates and times are not to be taken all that seriously. It’s not that there is anything wrong with the medical system, it’s just that each person’s reaction to medication, treatment, environment, etc is all different. Add to that the unpredictable nature of how many emergency cases come in during a day that supersede something that you were expecting and we have what we know as “Hospital time”. (for instance, being taken off of your IV line at 2:00pm, might mean 1:30 or 5:00pm and you just have to work around that.)

We understand all the things that go into making the reality the way that it is, but on the 16th of June, we started a journey that has turned our family upside down, and then on the 24th of June, we added to that family a new precious little boy. Both of these events in and of themselves requires a certain amount of readjusting, but put them together and then throw in “Hospital Time”… “Expect to be here 7 days… Make that 10 days”… “we’ll keep you one more night to observe”… “you got a fever, you’re going to have to stay 3 more days so we can check it”… “Its an infection and you will have to be here for a total of 10 to 14 days”… “we have to keep you the full 14 days and your counting is 1 day ahead”… and that brings us to today. (Oh and throw in a 15th wedding anniversary, xandra’s birthday, and fathers day that never really got celebrated)

In 24 days we have not been together through things that we would normally really lean on each other for. Patti and I are a great team and we have learned to be the right kind of support to each other, and we have been forced to do this separated for the whole ordeal so far. If they had told us at the beginning that we might be here for a month, that would have been hard to hear, but we would have been able to plan around that. This process has really been taxing on us.

PLEASE PRAY:
Gelica finishes her 14 days of antibiotics tomorrow am, and if everything else was ok, should could come home. BUT… It seems that she has developed an fissure in her colon (an expected complication of intense chemotherapy), and it could get infected. Also her white blood cell count is microscopically low.

Please pray that the small fissure will be completely healed and that her white blood cell count will rise. If they don’t then we wait day-to-day until she can come.

Pray that Patti and I and our family would be all brought together right now. We really really really miss being together and it is very emotionally challenging.

Thanks for being such a wonderful community and for all of your support, meals, kind comments… thanks to the ladies that came and disinfected almost every surface of our house. Most of all, we know that we are not alone.

Jon

S	M	T	W	T	F	S
			1	2	3	4
5	6	7	8	9	10	11
12	13	14	15	16	17	18
19	20	21	22	23	24	25
26	27	28	29	30