Special Nights Out with the Kiddos

Joe & I have been trying to do more fun things with the kiddos this summer, especially since last summer was such a bust due to my surgery.  So Friday night, Joe took Will to a local truck night.  Will loves big trucks, but even more Will loves tractors and it was lawn tractor tractor pulls.  Needless to say Will had a blast.

Yesterday we took Julianna to the cerebral palsy picnic & minor league baseball game afterwards that's sponsored by the children's hospital where her doctor is.  Erin & Jason went as well and took all 3 of their kids.  The kids all enjoyed playing kiddie carnival games, making crafts & posing in character pictures.

Ellie

Julianna

Ian

Emma

We also stood in line forever because the kids wanted their faces painted...I think it was worth it...look how cute they turned out!

Julianna wanted a butterfly.

 Erin's kids were all tigers.

They all enjoyed the baseball game too.  Julianna had been asking for months when the carnival & baseball game at her "special doctor's" was...now she's asking when the next one is.  Haha!

CAR Treatments

So after a crazy treatment week, I finally have a few minutes to let everyone know what's going on with my eyes.  Last fall, when I was in TX, I was diagnosed with CAR (carcinoma associated retinopathy).  Basically my body is producing a certain type of anti-body to try to fight my cancer and that same anti-body has decided to fight my eyes.  CAR is very rare, my new retina specialist here says he may see a case once every 10 years or so, so he is working with DR S in TX to work on my treatment.

Until about a month ago, my eyes were stable, then I started noticing a dark grey cloud right in the center of my vision in my left eye.  It got bad enough that I quit driving again (I couldn't see the speedometer when I was driving).  I also started having problems reading, I had to take my glasses off to read anything and things had to be about 4 inches from my face.  My vision over all was just getting worse too, so I mentioned it to Dr G and off to a retina specialist I went.

After consultations between Dr G, Dr S & Dr N (new eye doctor) a treatment was devised.  I received a shot of cortisone in my left eye last Friday and I started IV treatments this past week.  I had 3 days of IV steroids and 2 days of IV immunoglobulins (some special anti-body to fight my own body's anti-bodies).  I'll keep getting the steroids and IGIV every 3 weeks for a not yet determined length of time.  And I am scheduled to go back to the retina specialist and get a shot of cortisone in my right eye this next Friday.

This has been just another set back, but I am keeping my chin up because some part of the treatment is working.  The cloud in my left eye is gone and I'm driving again, and I can read with my glasses on again!  I've noticed a big improvement in just one week and am so glad I didn't just shrug it off as bad eyesight.

I will say that I did a lot of complaining this week.  It was very uncharacteristic of me.  I was not happy with 5 days of 4 hour or longer treatments, but I know how important they are and am glad its over.  Next week I have chemo and am hoping it doesn't knock me down too much because I have been feeling amazing and would like to continue feeling this way!

Cupcakes at the Camper

Since I've been feeling so good lately, we've been spending more time at our camper.  The kids absolutely love it there!  They both hate leaving it and Will even worries that every time daddy leaves the house he's going to the camper without him.  Last weekend, we took the kids to a cupcake decorating activity while there and they enjoyed every bite of the yummy cupcakes they decorated.



Will is getting so big!  And independent!

And Julianna is such a grown-up anymore, she says the most adult things sometimes!

Thoughts

This morning my cousin's wife commented on my Facebook about how happy she is for me and in her comment she also said she hopes I have been journaling my thoughts throughout all of this.  I haven't.  Other than my updates here (which are mostly medical), I haven't written down any of my thoughts about this journey, or really any of my thoughts about anything.

So, what are some of the thoughts that run through my head?  Here's a few...

*I will beat this cancer...I've never thought differently.

*Chemo sucks...there's no other way to describe it.

*Joe is the most amazing man in the world...he has held our world together and never complained.

*My kids grew up and I missed it...I missed Will as a baby, he was only 8 months old when I was diagnosed and suddenly he's 2 yrs old.  And Julianna is a little person, I swear she isn't even a kid she acts so grown up sometimes.

*My kids have missed out on a good mommy...neither one remembers me before I was sick, all they know is sick mommy.

*I have more friends than I thought...the number of people that came to my benefits and that have helped my family is huge!

*The friends I have are awesome.

*People really are good...I can't believe the number of strangers that have reached out to us in so many ways, from sending me cards to paying for plane tickets.

*I miss ponytails...I thought I wouldn't miss my hair so much, losing it the second time was harder.

*I don't miss bad hair days...throwing a hat on to leave the house is super easy.

*I like being skinny...although I would have preferred a different way to lose the weight

*My family is super duper.

*My sister may really be a super hero.

*Thank goodness for grandmas...I don't know what we would have done without my mom and Joe's mom, their houses are our kids second and third homes.

*Prayers do work...our family can prove it.

*It's ok if Julianna's bow doesn't match her outfit, or if her pants don't match her shirt.

*I like staying home...having nowhere to go for a whole day is nice.

*I love to hear my kids laugh.

*I will beat this cancer...I'll never think differently.

Remarkable!

I had a CT scan today to check the progress of how well my chemo is working.  Dr G told me there could be 3 outcomes to expect...1 )my tumors may have shrunk some, 2) my tumors could have stayed the same size, or 3) my tumors could have gotten bigger.  Well Dr G's exact words when looking at my scans were "your response to the chemo is remarkable!"

Here's the highlights from today's scans (we don't have all the results yet):

*I've had a lot of fluid around my lungs for the last 6 months and today's scan showed it is ALL GONE.

*My pancreas is still a little enlarged, but has significantly SHRUNK in size since my March scans.

*Dr G showed us a scan that had a HUGE mass in it from March (I'm not sure where the mass is, somewhere in my abdomen)...I mean really big, took up half the scan....today's scan showed it is GONE!

We are still waiting for some of the scan results, but I am confident they will be just as good.  Dr G didn't point out a single tumor or mass in today's scan, NOT ONE!  I am hoping that means once the rest of the scans are looked at they won't show any tumors either!  Dr G said a few times that if I hadn't just had the scans done at his center, he wouldn't have believed they were mine  :o)

He is going to call Dr Z in Texas and discuss what to do next, but he would like to do 2 more rounds of treatment and then possibly stop (at least that's how Joe and I took it)  He said he is just amazed at how well this chemo is working for me.

Thank you, thank you, THANK YOU to everyone that is praying for me and my family.  The prayers are definitely being answered.  God is good!

Little Triumphs

These days I love to share my little triumphs.  Here's a few of the latest (if you haven't heard about them yet)...

*The last 2 rounds of chemo have been accompanied by dramatically lessened side effects.  I didn't take a single anti-nausea pill after this past Monday's treatment!  This definitley makes me dread each treatment less :o)

*I'm still exhausted most of the time, but my mornings seem to bring a little more energy.  I take that time to play with the kiddos.  I even got on the floor inside a tent with Will not long ago!  Until recently, if I got on the floor I literally had to have someone pick me up.

*My muscles are slowly regaining strength.  Due to being on a steroid for way too long, I lost a ton of muscle strength.  When I came home from Texas I couldn't even go up any stairs.  Not only can I now go up stairs (and I just started doing it by alternating feet like a normal person), but I CAN PICK UP WILL!  I haven't been able to pick him up since December.  It is so hard to not be able to pick your child, especially when he is a crazy daredevil that gets hurt a ton and you want nothing more than to pick him up and comfort him.  I can't carry him around, but I can at least pick him up and hug him :o)

*Tomorrow, we're having a building party.  Several of our family members are coming over to help finish installing a fence around our backyard.  Why is this a triumph?  I can't take the kids outside without another adult because I can't run or chase after Will.  Although our street has a low speed limit, cars speed all the time and Will does not stay in the backyard and he does not listen when told to stop.  Once the fence is up, I can take the kids outside and not have to worry about Will running into the street.  A little bit of parenting independence...triumph.

Those are just a few of the little triumphs I've been celebrating.  I plan on celebrating many more as the weeks go on!

Long Time No Writing

I know, I know, its been forever since I've posted.  Its a good thing though.  I have been enjoying my time at home so much that I just haven't gotten on the internet.  I check Facebook on my phone, but today is the first time I have used my laptop since February.

So what's been going on since my last post?  I have been doing really well actually!  Ok, so I have the nasty side effects of my chemo, but they are much more tolerable here at home than if I was in Texas.  Thanks to Joe and my sister, we were able to find an oncologist here at home that was willing to work with Dr Z.  So I have been seeing Dr G since I've been home.  He's very aggressive with my treatments and keeps a close eye on my counts (which completely bottomed out about 2 weeks ago).  I really like him!

I have also gotten a port.  Its basically a permanent IV access just under my skin on my chest.  It saves my poor veins from more damage, but it was definitely not fun having it placed.  Its finally getting less tender and not as painful to have it accessed.

The best news of all...I went back to Texas for scans and to see Dr Z last month and my scans showed a dramatic improvement in my tumors!  2 lymph nodes that were so large you could see the bumps had shrunk back to normal and you can't see or feel them anymore!  It was definitely an exciting trip to Texas (short too...only 3 days!).

The kids have been doing great, they like having mommy home, even if I am just sitting and watching them play.  Julianna has been doing great at school and at her physical therapy.  Will...well Will is a maniac.  :o)  He is all boy and does everything at 90 miles per hour.

I am so glad to be getting treatments here at home, I love seeing Joe and the kids every day!