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 :(

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 :)

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

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.

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.

it's been a while!

 

Things have been so crazy around here that I haven't updated this blog for a while!  Carter is doing really well, has had two clinic visits since the last update.  Everything has looked good.  He also had one ER visit in the middle of the night.  He was diagnosed with "the beginnings of pneumonia" and was on antibiotics for 10 days.  Other than that, nothing major to report on our awesome Carter.  He'll have his last clinic visit at our hospital in a few days.  After that, we're heading across the world to FRANCE!  We already have a clinic visit set up with the new French hospital in January.  Let's hope there's some English speakers around!  Carter's doctor is very supportive and not worried at all about our big move.  I, on the other hand, am terrified about adjusting to a new hospital, new doctors, new nurses, new routines, taking the bus instead of driving our car to appointments, the list goes on and on.  Overall, I'm very excited about our new adventure but this aspect of it is not something I'm looking forward to.  Hopefully it will be a quick and easy transition.  We will really miss our current doctors and nurses.  They are all so fantastic and really care about my little boy.  It will be hard to say good-bye to them in a few days!

We also had a little "graduation party" for Carter from the Chemo Pal program.  Usually this kind of party is reserved fo whenr chemo is finished but since we're moving we got to have Carter's party early.  It was great to go out for frozen yogurt with Jason and Jeannie (from the Children's Cancer Association) and say thank you to them for all their support and help through these past two years.  I wish I had remembered to take a picture while we were there!  This picture was from a while ago, but it will have to suffice.  We have grown very attached to so many people who have helped us along this crazy cancer-fighting journey.  I hate good-byes!

two more clinic visits

 

Carter went in a week and a half ago for a CBC.  He's been on about half doses of both his oral meds and his ANC was high enough to bump one up a little.  The boys had a blast with Carter's chemo pal while we waited to talk with the doctor. 

 

Then a few days ago he went back in for his regular monthly clinic visit for chemo.  His ANC was sky high at 4300 so we increased his other oral med a bit.  Everything looks really good and he's feeling great these days.  He is still loving kindergarten.  He even wanted to bring his backpack in the clinic to show the nurses.  Other than that, not much to report (which I'm not sad about!).