Tuesday, December 17, 2013

Our last scheduled visit in France

 The view from our hospital room

A few weeks ago we had our last scheduled appointment at the hospital here.  It feels so good to *hopefully* be done!  Everything went well although my suspicions of the doctors not really understanding what I say was confirmed.  I had asked them about three weeks prior to our appt to send Carter's medical records and info to our new hospital in the States.  They still hadn't by the time our appt came so I asked her again to do it.  I had to have Dennison call her a week later when it still hadn't been done because our new hospital wouldn't let us set up an appt with them until they get that info.  He told her all this and she said, "Oh, I'm sorry I didn't know!"  I had told her all this the week before, I guess she just nodded and said OK even though she didn't understand me.  Haha, oh well, I'm pretty used to not being understood here.  It's mostly taken care of, so whatever.

our hospital for the last year

Next stop, an American hospital!  Woohoo!  I do have a slight fear that I'll be so excited that the doctors and nurses will actually understand me that I won't shut up and they'll have to ask me to keep it down because I'm disturbing the other patients.  I'll let ya know how it goes :)

Wednesday, October 9, 2013

I'm back in the saddle. And by saddle I mean hospital.


A few days ago was Carter's monthly check-up and chemo visit.  I hadn't been to the hospital in 5 MONTHS!  Last time I could say that was nearly 3 years ago.  But now that my awesome husband is back to full-time school, my break is over.  I was nervous to go back there but Carter showed me where to go and what to do :)  I can safely say that I did not miss that place one single bit.  BUT I did miss being there with Carter while he goes through all that.  He's just an amazing kid.  He's had to grow up quickly and he has embraced his maturity.  I've missed our day of one-on-one time that we get each month.  It was great to spend the day with him and feel my heart swell with pride when the nurses comment on how great he is.  "Tres bien!" they say.  Ah, I just love him.
And we reached a sort of milestone this time around!  This *should* be (if all goes according to plan...) his last lumbar puncture with chemo in his spinal fluid at this hospital!  He still has two more chemo appointments here but just through his IV.  And he'll still have 2 more lumbar punctures before he's done with treatment in April but we like to celebrate any milestone that we can come up with.  He really likes the way they do it here though because he likes the laughing gas they give him.  He literally did a double fist pump and yelled "Yay!" when they wheeled in the canister for it.  Haha, silly boy.

 
We've been doing homeschool..  He would rather be at "real school" but he's doing well with me as his teacher.


He's lost 5 teeth now!  He looks so much older with his new big teeth.  There will always be a part of me that misses my kids being little as they grow bigger and bigger but mostly I am just so thrilled that they are doing just that.  Facing the reality of possibly losing a child has changed me in a lot of ways.  Life is so precious, truly a gift from God.

Here's an old video of Carter riding his IV pole like a scooter in the hospital.  It gets a little boring in there.

video

Friday, August 16, 2013

Summer update


We've been doing very well over here across the ocean!  I haven't updated for a while because I've been very uninvolved in the hospital/doctor scene.  And I love it.  Dennison has been on a break from school and so he's been taking him each month.  Carter has had two unscheduled visits to the hospital so far this year.  The first was when he fell off a little ledge at the park and banged his port.  There was a pretty big bruise right under it and he was in a lot of pain.  We took him in to make sure it was still correctly positioned and working properly.  All was well other then some soreness.  The second time was when Carter woke up with a fever.  He was on antibiotics for a week and his blood cultures were clean.  Other than that, it's been business as usual.  Still taking oral meds daily and visiting the hospital for IV chemo monthly.  I don't really even know what his blood counts have been for the past four months.  I assume they're fine and normal otherwise they'd change his medicine dosage.  Let me just tell ya, it's been a nice break from thinking constantly about it!  All the thinking and worrying hasn't changed anything in the past and it's quite liberating to let go a little bit.  I'm trying to just enjoy this time in France with my family and soak up all the goodness.  Dennison will take him two more times (they want to do a blood count check half-way through this month to see if they can increase his doses) then it's back to me.  I am so impressed with Carter and how well he handles visiting this hospital where there's very limited English spoken.  What a trooper he is!  I have a harder time with it than he does, that's for sure.

He's been doing great.  We've really been enjoying this summer and all the traveling and relaxing it has brought our way.  I should get a more recent picture of him because he's now lost FOUR teeth and two new ones are growing in!  He looks so different!  His little brother said to me the other day, "We're the luckiest family in the world!"  Amen my dear little one, amen.

Wednesday, May 8, 2013

Less than a year left!

 
 Packing up his toys to take to the hospital. 


Words cannot even express how happy I was to have these two go to the hospital this month.  I don't think it's any secret that dealing with the hospital here is a BIG challenge for me.  With Dennison having a bit more free time these days he was able to take him.  I was so SO happy.  They had a good time and everything went great.  Except for when Carter tripped on the way back to the car afterwards and scraped the skin off his forehead.  Ouch.

Other than one ridiculous bloody nose that took forever to get under control, everything has been going great.  Carter is feeling really good and is perfecting the art of teasing his little sister.  Life is good.

Thursday, April 25, 2013

two hospital visits


 We went in for Carter's monthly chemo and check-up a few weeks ago.  Everything went great, but slow.  He's doing fantastic and is feeling great!

 
View from his hospital room.

 
 There's lots of pink in the hospital. 
 

This was when they were preparing to do his lumbar puncture.  They give him something similar to laughing gas which helps with pain and anxiety.  He did great of course.

Last week we were playing at the park when Carter somehow fell off a ledge, face-first, and hit his port on the ledge.  He ran over to me crying hysterically and holding his chest.  I was so scared!  I looked at his chest and there was a big bruise already forming right above his port.  I tried calling the hospital but no one spoke english and they eventually hung up on me.  I really don't like this hospital.  I had my french-speaking husband call later that evening once he got home from school.  The nurse asked what time the accident happened and then asked why we didn't call sooner.  Rrrrr.  I know I'm in France and I should learn French and I'm trying, but I really thought there would be more resourced available, especially at a hospital while dealing with very important health issues of my child.  Dennison took him in the next day to have everything checked out and it's all working perfectly still.   I felt so relieved that he is fine and also that I wasn't the one who had to take him in!  Thank you husband!

Thursday, April 4, 2013

a replacement

What do these pictures all have in common??
 

 
 Besides Carter being in them all...
 

 
It's nothing cancer related....


 
That's right!  His precious blue blanket!  He has had that blanket since birth and it has always been his most prized possession.  It has been through quite a journey alongside Mr. Carter.  It was his constant sleeping companion.  It's been dragged through many a playdate and roadtrip.  Everywhere Carter went, the blanket was there.  He always HAD to have it with him.  And all those rough hospital days were made a little easier when he had his blue blanket.  As we journeyed to our new home in France, the blue blanket somehow escaped his possession.  I still don't know exactly where we lost it.  It was on the plane with us to Paris but I'm not sure it got off with us.  If it did, I'm not sure it left the airport with us the next day.  Or maybe it's final resting place is the train we took to Nice.  I'm not sure, but it's gone.  Carter is very sad that it's gone but I think I might be more upset about it than he is.  I'm a sentimental fool I guess.  That sweet blanket represents so much to me.  It reminds me of how brave my little boy is.  How strong and smart and thoughtful.  And now it's gone.  We've been searching for a suitable replacement ever since we discovered it's disappearance but nothing has been quite good enough.  One day while we were skyping with my mom Carter told her the sad tale of the lost blanket.  He promptly ordered up a new one from Grandma. 
Yesterday, this came in the mail:
 


He is so happy to have a new favorite blanket.  It hasn't left his sight since he got it.  As sad as I am to not have the blue blanket anymore, I really love that he's moving on to a new favorite blanket.  One reason we loved the idea of moving to France was to have a sort of new start.  Try to move past all the crap our family has been through these past two years and start to make new memories in a new place.  Now Carter has a new blanket to start with.  I like this.  I like the symbolism and I love the blanket.  Thank you mom!!

Saturday, March 30, 2013

In Honor of Carter

 
My mom participated in the Rex Lee Run that raises money for cancer research.  She wore this tag with Carter's name on it.  Isn't she awesome?? 
 
It is astounding how brave and mature Carter is.  You've heard it before and you'll hear it again, he is inspiring and amazing.  This whole french school thing is proving to be quite a challenge for him and us.  But no matter how hard it gets, he still wants to keep going.  I've given him the option of homescooling but he wants to go to the real school.  He has such a positive attitude and sees the good in everyone around him.  And he's only 5 years old!  I can't believe how blessed we are to have him in our family.  I feel that way about all three of our kids.  Each is a beautiful little blessing.  I am one lucky mommy.

Saturday, March 16, 2013

March appointment

 
 

Well I'm glad that's over.  It was kinda difficult this time.  I brought J and V with me and apparently children other than patients are not exactly welcome there.  They weren't allowed to go in the hospital room with Carter (maybe because they're shared rooms??) so they had to wait in the little toy/waiting room.  The problem was that I can't be two places at once.  We ended up all hanging out in the small and crowded toy room for all 4 1/2 hours.  The missionaries came with me again to help translate but it wasn't much use since they couldn't come with us when we went with the doctor or nurse either.  It was ridiculous.  And it was very obvious how much time we actually spent with a nurse or doctor since they had to come get us each time.  It was maybe 15 minutes total.  That's 4 hours and 15 minutes of just waiting around.  I'm sure it's a great hospital but I don't like it.  The last time they came to get him was for his chemo.  By that time the missionaries were gone as well as the two ladies who had been doing arts and crafts with the kids.  We were alone in the play room so I really couldn't leave my two youngest in there by themselves (I'd left them with the art ladies before).  I didn't know what to do since they wouldn't let us all go together.  I asked Carter if he would be ok to go without me with the nurse for his medicine.  He got a brave look on his face and said, "sure!"  Seriously?!  He is so awesome.  They were gone for about 10 minutes and he looked so proud of himself when he strutted back in, his port de-accessed and everything.  The nurse was very impressed with him.  So we were finally ok to leave but the doctor was out to lunch.  I needed to get some perscription refills and I had some questions for her but no one could understand that I was trying to ask when she would be back from lunch.  I finally just left and luckily she called me that evening and we got it all taken care of. 
Another added frustration to the day was I actually drove our sweet new ride up there instead of taking the bus.  I thought it would be so much easier and convenient.  Ha!  It took me 25 minutes to park at the hospital then we had to walk up a long steep hill.  Then I drove around for 45 minutes looking for a spot close to our apartment before I finally gave up and paid to park in a parking garage.  It was a long day.  I am just so thankful that Carter is so brave and easy-going about it all.  I'm glad I am the only up-tight one that I have to worry about! 
It's kinda easy to ignore that Carter is still going through chemotherapy most of the time.  Mostly because I want to put it out of my mind and just enjoy life.  Then sometimes things happen that bring that fact right to the front burner again.  It happened today.  We were driving to Monacco and then planned to keep going over to Italy.  Just because we can :)  All three kids fell asleep on the way there and we were enjoying the breathtaking views when I hear from the backseat, "I feel like I need to throw up...".  Good thing I'm well practiced with situations just like this.  I grabbed what I think was a plastic bag that a happy meal toy came in just in time.  Gees, it just breaks my heart to think about all he's gone through and is STILL going through.  He's so brave and tough and mature but I hate that he has to be at such a young age.  I hate that he is so familiar with the feeling of knowing he's about to throw up.  I hate that him and his brother often say that they hope other members of our family don't get a blood bug dragon like Carter's.  Ugh.  So our trip was cut short and I was reminded of how much cancer treatment used to rule our lives.  We planned everything around him and his appointments and medicines and side effects.  It's nice to have more freedom now but I don't appreciate the unpleasant reminders that pop up.  So until next time I'm reminded, I'll try to put this painful fact out of my head and enjoy my beautiful family.

Sunday, February 17, 2013

rough days



It happens about once a month where Carter will just feel awful.  His legs and back hurt (thanks chemo...) and then he gets headaches.  It's usually within a week of getting chemo in the hospital.  And then the week after that his stomach bothers him because of the steroids that he takes for five days each month.  I'm embarrassed to admit that it took me about a year to notice the connections between the medicines he was getting and the different side-effects.  Maybe I was still in survival mode or something, I don't know.  I don't really have an excuse, I just didn't think about it.  But now that I have payed more attention, it's like clockwork.  Today was one of those bad painful days for him.  He just lays down and cries because it hurst so much.  Poor guy, it's so heartbreaking.  But today was hopefully the worst of it and he'll feel better tomorrow.  But then his stomach will start hurting for 3 or 4 days.  But THEN he'll feel better.  And then get more chemo a few weeks after that.  Ugh.  Is it April 2014 yet?? 

But all this being said, he has WAY more good days than bad and for that we are all very grateful.  I'm just feeling really sorry for my little guy right now.  It took a long time for him to finally be able to fall asleep tonight.  It was a rough day for him :(

Saturday, February 16, 2013

Feb chemo

We had our second visit to the hospital here for Carter's February check-up and chemo.  Everything went very smooth this time although it still took longer than I wanted it to.  One of the many things I've notice about living here is that no one is ever in a hurry.  And they all own at least one dog.  And they all smoke.  True story.  So back to the visit.  My very sweet (American!) friend offered to watch my two littles while I took Carter.  That was a life-saver!  Then to make it even better, the missionaries from church came with me to translate.  I am once again so grateful for the kindness and generosity of these wonderful people who barely met us and are so willing to help.  Everything went according to plan with two exceptions.  #1:  Carter's ANC is pretty low, only 200 right now which puts me into extra crazy-phsyco-hand sanitizer-stay away from my son with your germs mode.  Chicken pox is much more common over here, which is sucky because it's really scary and dangerous for chemo patients.  I've been kind of a nervous wreck about that one as we have been around family members of chicken pox-sick kids and didn't know til later.  Terrifying.  It's hard for me to let him go to church or school because it could be hiding anywhere!  And these kids don't even know they have chicken pox until they've been contagious for days!  Ah, what's a mom to do?!?!  Sorry, anyways... they decreased the dose of one of his oral meds in hopes that his counts will come up a little.   #2:  Carter had a stuffy nose so they wanted to test to see what kind of virus he had.  They've done this once at our old hospital when he came in with a fever and they just swiped the inside of his nose with a q-tip type thing.  WELL, this time they wanted him to (sorry, this is kinda gross) get some snot down the back of his throat and then spit it into their little official spit jar.  It's pretty hard to explain to a 5 year old how to do that - he couldn't do it.  Their next option was to stick a tube up his nose and down his throat and suck some out.  And that's precisely what they did.  He HATED that!  Maybe it wouldn't have been quite so bad if the nurse hadn't told him that it wouldn't hurt at all.  He kept telling me how much it hurt afterwards.  He screamed and cried for a while afterwards.  It was heartbreaking.  He hasn't had to do anything so crappy for a while now.  This one was hard for me because I'm not convinced that it was necessary.  Carter showed up at the clinic countless times in Portland with a stuffy/runny nose and it was never even considered to do something like that.  It all happened so fast I didn't even really know what to do.  But if they ever want to do that test again when he doesn't even have a fever and is otherwise feeling fine I will kindly tell them no.  Other than that, it went well and we got out at a much more decent hour than last time.  Oh, one funny thing though.  I have to check in with admissions when we get there and pay for our visit.  These past two times we've just had to pay for it ourselves as we have been applying for health care but it's not finalized yet.  The secretary has been so concerned for us both times that WE have to pay.  It's socialized medical care here so it just blows her mind that she's not sending the bill to the government.  She told the missionary who was translating between us, "tell her right now that she needs to apply for medical coverage.  Tell her in front of me right now so I can see it.  She really needs to do that!"  Haha, kinda sweet I guess that she's so concerned.  It's a big bill so I don't blame her but we hopefully will get reimbursed for it.  It's fun to see all the differences in lifestyle here.  It gives us a new and different perspective on life, that's for sure.  But we have been enjoying ourselves a lot.  I'm so glad this monthly visit is over!
Sorry I've been so bad at taking pictures!  I'll be sure to bring my camera to the next hospital visit so you all can get a feel of the place.  I know you're all so curious what the inside of a French hospital looks like :)

Friday, February 8, 2013

Prayers needed for a friend



Some of you know our friend Jake Newren who has been battling the same kind of leukemia as Carter, only with an added challenge that required a bone marrow transplant.  ALL is the most common form of childhood cancer but it's rare (and more dangerous) for adults.  Jake and Dennison were roommates back in their single days and Jake now has a beautiful family.  He even saved us on our wedding day when we were stranded at the temple.  Our truck keys were headed back to the reception with my parents and Jake came to our rescue with the spare key.   He was diagnosed last fall and had his transplant last month.  He is in need of lots of prayers right now, we're praying for a miracle!  We know from personal experience that there is POWER in prayer!!  We love you Jake!

http://www.donationto.com/fightingwithjake

Saturday, January 19, 2013

January hospital visit, or should I say rendezvous

We had Carter's first visit to the French hospital.  It started out horrible and ended ok.  We got there at 10am and they seemed a bit confused as to what to do with us.  His name was on the schedule but the doctor I'd been emailing wasn't in the hospital yet.  A few of them spoke a little bit of English, not really enough to fully communicate, and I know about 10 words in French so I was of no help.  Luckily, I brought along a wonderful new friend who did some translating for me.  We were finally assigned to a small room with two beds.  The nurse sent me downstairs to get registered (my awesome friend did that for me while I waited with my other two kids in the play room), and when I got back to Carter they had already accessed his port and taken his blood.  I was a little bothered that they did it all while I was gone but he was fine with it so I tried to tell my inner control freak to chill out.  They brought in some numbing cream to put on his back for his lumbar puncture.  I've never put it on him since he's always sedated for his LP so I asked them if they ever do sedations for them.  They do not, they just give the kids laughing gas or something like it, topical anesthesia, and hold the child still while they do it.  I was really nervous for it.  I told Carter what they were going to do and he told me he just wanted to be asleep for it.  Not long after we got settled, another kid was assigned to the same room in the other bed.  It was so awkward.  I know it used to be very common to share hospital rooms and apparently it still is in some places but this was my first experience with it.  It only made it worse that we don't speak french so the room was filled with a very uncomfortable silence.  After the other kid had his blood drawn, they saw that he was neutropenic (very low anc) and therefore had to have his own room.  We were moved to another room.  The doctor I'd been in contact with arrived at the hospital and came in to meet us.  She was so nice and sweet and spoke very good English.  I started to feel a little better after meeting her.  Then we waited.  And waited.  And kept waiting.  And then waited some more.  4 1/2 hours after our arrival they finally came in with some chemo.  It was so frustrating waiting so long.  Especially because no one told me what was going on.  And I couldn't just go ask a nurse because most of them wouldn't understand me.  It was really crappy.  But they finally came in to do the LP.  Carter, not surprising, did awesome.  He said he really liked the gas.  He was pretty silly.  It was fast and easy and I was so impressed with Carter.  Right after they finished, they had me help him lay down on his back and then said, "ok, now he needs to lay flat for two hours."  What?!?!  Are you kidding me?  We've already been here for 5 hours, we're exhausted, starving, and grumpy.  Not to mention my sweet friend who was not planning to be at the hospital with me ALL day.  I could not believe it.  But we turned on the tv to some french cartoons, pulled out the iPad, and a very kind nurse brought us a tray of snacks.  They came in with his other chemo which just takes a few minutes and then deaccessed his port.  We even had a visit from a clown.  She made balloon swords for the boys and blew bubbles for them to fight.  This is especially funny because my second born tells people he wants to be a clown when he grows up because he likes to make people laugh.  She was very nice and funny.  Just before the two hour mark I went and found the doctor and asked if we could go.  She looked a little surprised to see me, like she'd forgotten we were there, but told us that we could go.  We got outta there asap and got on the super crowded bus to go home.  What a long day!  Hopefully next time will be much better.  There will be no LP and they'll have all the paperwork and everything already.  It *should* be short and sweet.  I'm glad our first visit is out of the way.  I can't get the pictures to upload right now but I'll try again tomorrow.  There's a good one of the bubble-balloon sword fight.

Monday, January 14, 2013

We're foreigners now

We had Carter's last clinic visit at our original hospital just befor Christmas.  I took pictures of the hospital and of Carter with his doctor and nurses but they were lost last week when I left my phone on the bus :(. His counts were good, anc was higher than they like to keep it at this stage but with all the traveling we were about to do he left his doses the same just to be safe.  It was very hard to say good bye to everyone.  I cried the whole way to and from the hospital that day.  I tried to keep it together while inside the building, but didn't entirely succeed.  I had written some thank you notes and handed them out despite feeling that they were grossly insufficient.  How do you say thank you to the people responsible for saving your son's life?!  It was very emotional for me to leave that place for the last time, more so even than I thought it would be.  But leave we did.

We past the 2 year mark since diagnosis at the end of December.  We spent the day in Paris.  It sounds awesome and glamorous but it was far from both.  We were actually stranded in the airport all day long.  Literally.  We arrived at 9am, tried unsuccessfully to buy train tickets all day (our bank card wasn't working, we still don't know why), on the phone with our bank, sitting on the airport floor, trying to keep track of the kids and watch our ridiculous pile of luggage.  Completely exhausted, lots of frustration, and very little patience.  That was our day.  We finally gave up and forked out lots of money to stay at the Sheraton hotel inside the airport.  We caught a train the next morning and things have gotten better since then :). It feels good to have a full two years between us and that awful night of diagnosis.  That night I could not even come close to imagining what life would be like two years later.  And I NEVER would've imagined that we'd be living in a foreign country while Carter was still going through treatment.  It seems insane when I think about it but we know this is where we're supposed to be.  We are overjoyed with how well he has been doing and look forward to a lifetime of health and happiness for him.

Tomorrow morning is our first appointment at the French hospital.  To say I'm nervous is a laughable understatement.  I've mapped out the bus route several times, just to be safe.  I have my huge binder of cancer info and all of his past cbc's.  I've written down the name of his new doctor and her department in French in case I get lost and can't find anyone who speaks English.  I've recruited a French-speaking friend to come along with me.  I think I'm prepared... But I'm totally freaking out!  Ugh, I just want it to be tomorrow afternoon already so it's over.  Wish us luck, I'll let you all know how it goes.