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1/25/2008
Cami had another Johns Hopkins appointment for pulmonary
on Wednesday 1/23. She has lost 2 pounds, now 28 lbs, so we need to focus
on her weight gain, not that we don't anyway but if anyone had any suggestions,
we'll take them! We also scheduled her first "IV IG" infusion for
2/29 3/1, basically she gets admitted to JHH for a 24 hour infusion of
immunoglobulin (blood product that boosts immune systems). Dr Fan(sp?),the
doctor from Texas who is known for pediatric lung transplants, stated that
intertesial lung disease associated with transplants is sometimes helped with
this therapy. No real side effects except during the transfusion, possible fever
and chills. Now all our eggs are in the IVIG basket, let hope it works!
Otherwise, no news (which to BJ and I is good News) Every day, we expect
something good to happen, and it does! Today, Cami ate all four chicken nuggets
at Burger King!
1/18/2008
so far so good, Cami hasn't missed a minute of school this
year! three whole weeks, AND during cold and flu season, she is amazing. Two
great things happened this week, 1. Her Teacher, Mrs Redmond (former reading
teacher for whole school) moved Cameron up in her reading group, to the "pink"
group (I don't know what Pink means but I do know what "up" means :) and 2. she
was asked by Art for the Cure (a nonprofit organization for survivors) to create
a piece of art that will be the prototype for a national campaign. She was told
to draw/color anything she likes to do, even if right now she can't do it. She
colored a picture of herself swimming. I will update you all if/when I can and
if I get the artwork back, we will scan it and post it on the website. Thanks
again for all your thoughts and prayers, she would not be doing as well as she
is without all of you. Our next Johns Hopkins Appointment is next Wed 1/23, wish
us luck
1/3/2008
Well, we have started this year off right, Cami has gone
to school successfully for 2 straight days, no complaints! We have added for her
success at school her "transporter" (stroller) but it is for big girls and she
seems to be very happy getting to and from lunch or gym in it. Cami made a panda
bear in art class yesterday, with construction paper and glue, art is her
favorite subject. Her sister Julia loves to help her with art and homework from
school, she is such the little teacher. We have finished the antibiotic that ran
it's course for two weeks, BJ and I are not sure if it did anything but we
always do as the Doc's say. We also have added a new medication, Periacton,
which is a antihistamine, but the side effect is ... appetite! Hooray, and she
has really begun to eat more on her own!
Please keep us in your prayers, we are trying everything
we can and something will work this year - as Aunt Debbi says "The word for this
year is BELIEVE" and so we do! we have too!
12/19/07
We visited Johns Hopkins today for a pulmonary check up
with Dr Mogayzel. We haven't seen him since 10/17 and over the last several
weeks Cami has been "fighting" something, coughing a little more, sneezing more,
less energy, loss of appetite, not too happy. We, of course, had her "listened
to" by Dr Schultz, Family doctor, who said that she sounded fine. So today's
appointment was to not only have a check up, but also diagnose her current
smoldering problem. Dr Mogayzel decided to put her on a antibiotic, up her
steroids and up her inhaler and see how she does over the next month. Which all
three sounded good to BJ and I , all three of those changes will help her
improve her "happiness level" and keep her comfortable. We also were there to
discuss the Lung Transplant Doctor's visit to JHH, his thoughts about Cami were
that:
1. she is doing all she can do for now, and
2. maybe after this antibiotic course, in Jan 08 we could try IV IG (to boost
her immune system) so we were happy with those conclusions as well.
After along visit at Johns Hopkins, Cami went
straight to a Brownie Party to make cookies and Mom and Dad went straight to the
bar for a stiff one. Please keep praying for us, those prayers are what
keep us going and visit the Christmas card button on this site for pictures of
all three girls at Christmas time. Happy Holidays!
____
10/17/07:
Cami had two appointments at Johns Hopkins today:
Endocrine - fine, she isn't growing but wasn't expected to
because she is on steroids, which stunt your growth, Dr Guttman-Bauman was, as
always, very positive and delightful, if you kid has to be sick, she is the one
to see. As soon as we can get her off of the steroids, Cami will go back on
growth hormones.
Pulminary - BJ and I are trying to be very "half-full"
with this appointment. Her CT of her lungs shows no change, as far as he can
tell but will bounce it off of the Radiologist, which is a good thing I guess
because then that means she hasn't gotten any worse. We are bringing the dosage
of steroids down to 10mgs and wont see him again until 12/07 but he did want to
have a conversation with us regarding a lung transplant. BJ and I both agree
that we are not there yet, there IS another medicine specifically
for"intertestial fibrosis" that was just approved (but not for children) and he
will investigate that more before we see him again. WE ARE THINKING THAT
MEDICINE HAS TO WORK.
Also the world leader in Pediatric Intertestial Lung
Disease will be coming to Hopkins in Dec and they will be presenting Cameron's
case. He is from Houston and has performed Lung Transplants (50% mortality rate
- UGH - We are not discussing this yet)
Please keep us in your thoughts and prayers, Miracles do
happen, every day!!!
10/16/07:
Amanda ,Michelle Zurcher and I
went to Alabama to visit a very good friend, Laura Rush and her family for the
weekend and see Cami's Bone Marrow Donor. If you ever can get a chance,
you should definitely visit Alabama, we had a wonderful time. Greg Young,
with his son Jonathan and girlfriend, Lindsay treated all of us, (see pic)
Laura Rush, Meagan, Michelle, Amanda and I to a wonderful lunch at Giovanni's in
Athens, Alabama.
We then enjoyed a walking tour,
including an Athens specialty called "Cherry Lemon Drop" and we finished
our tour in the car and got to see the beautiful little southern town and my
highlight was seeing where Greg got tested for the bone marrow drive in June
2000, Cameron's Angel, Horray - he is a perfect match and was more than willing
to save her life , Thank You Greg. As you can see, they are all now
wearing CAMPOWER, the more it is wore, the more strength she gets.
9/30/07
Here is Cami at school with her friends, they are always helping. She is really loves her teacher and her school and they all seem to like her as well.
8/31/07
Cami is loving first grade, she comes
home with a bundle of energy, always wanting to go on play dates after snack and
homework. let's hope she keeps this up!
Here are pictures of Cami, Amanda and
Julia in front of our house on the first day of school and the other kids at the
bus stop, very cute!
The day before school starting BJ ran
in a 10 miler in Annapolis. Very tough, but he finished (1:39) and he wore
CAMPOWER tshirt to keep him inspired!
If anyone is interested in purchasing
a tshirt, they will be available soon, for both kids and adults, probably in a
red tiedye and stone washed. keep checking back to the website for more
information. and remember if you get any pics we would love to add them to the
site!
Next up for him is the Army 10 miler
in DC in October. He's looking to improve his time!
Our Fighter Pilot friend, Mark
Valentine, (see campower pics that his squadron flew over Iraq) will be doing
the "fly over" for the Ravens home opener!! with his CAMPOWER, if you see an
F-16's wings wiggle back and forth, that's him saying hi!
8/24/07
Wow the summer goes fast! Cami had a
pulmonary appointment on Wednesday, Aug 22, as a regular check up. They have
increased her oxygen need to 2 liters per minute, which might be a good thing so
she doesn't run out of gas at school. The doctor also filled out all his
paperwork for 1st grade for Cameron, which is always great!
Cameron, Julia and Amanda are all
excited to start another school year, although, Mom is the most excited!
Uncle Alex, Aunt Jen and Baby Grace
came for a visit this week all the way from Colorado, She is adorable and today
is her first birthday! Happy Birthday Grace! Cami was a very big girl, she even
helped put Grace to bed a couple of times.
We really will need prayers in the
upcoming months as she starts school and needs to grow, be more active, and
reduce her need for oxygen, I know that God answers prayers and there are
miracles happening everyday!
_____
7/25/07 - No news is good news, I
always say! Cami hasn't had a Doctors appt since 7/11 (a hex I am sure) she is
eating well, because of steroids and looking forward to getting started in first
grade. Swim team for Julia and Amanda has ended, so we can now relax and sleep
in for the rest of the summer, yeah right, anyone with kids knows, nobody does
that!
BJ's sister, Diane and her husband
Gil, came for a quick visit from the west coast and got to enjoy this beautiful
weather for a change. Cami, Julia and Amanda went out on Aunt Debbi and Uncle
Gary's boat on Monday 7/23 and had a bunch of crabs at Mike's (regardless of
oxygen needs, our life sounds normal) Thanks for all your thoughts and prayers.
These pictures are from when we went
to Aunt Sandra and Uncle Dan's beach condo in Ocean City over the July 4th week.
7/17 - Well, it seems if I am so busy
with Cami and her activities to blog, then that is a good thing. We
just back from the pool, brought dinner, Cami got in and now is in the
shower because (she had chlorine in her hair - girls and their bad hair days:)
On July 11, BJ and Julia took Cami
to both endocrine and pulmonary both good news, or better yet, no bad news!!!
She purchased her lunch box for
school today and put her name in it as well as walked most of today for
"training" for first grade (lots of walking)
Please keep us in your prayers,
everyday she seems a little happier and therefore Mom and Dad are as well!
6/28 - The doctor gave us the go
ahead for the beach, so we will be traveling, with a Uhaul of medical supplies,
to the beach this Saturday through next Friday 7/6 for the Forth of July holiday
in Ocean City, Maryland. Guess what food we'll be taking with us!!!!
6/27 - Well, Cameron Diamond Day at
Super Suppers was a success! Cami had a great time making Pork tenderloin with
good friend Chelsea Zurcher
and here are some of her friends making cupcakes
Fun has had by all. Thanks to everyone who joined in the fun day and who
daily keep us in their prayers!
6/26 - Well, Cami got her hair cut
for her big day, Cameron Diamond Day at Super Suppers, Julia and Cami will be
there to kick off the day and stay through a few cupcakes then I will come back
for a margarita (or 5) Of course pictures will be taken and on the website as
soon as possible so you all can see how great she looks. None of us would look
this good after 7 days in PICU and 15 medicines pumping through us, I know I
don't! If the Doctors let us, we will be trying to get to the beach of a few
days, little things like oxygen tanks floating in the Atlantic Ocean and nasal
canulas filling with water seem to bother pulmonary BUT very few things stop
Cami now (have you met her mother?? that is were Cami gets her fight!) Our
wonderful Aunt and Uncle own a place in OC so if the planets align we will be
there by Sunday, thanks for all your thoughts and prayers, keep them coming!
6/18 - Cami and Dad went to a follow
up appointment yesterday at Johns Hopkins. Blood work (according to BJ, she
laughed when they drew the blood) and a chest x-ray showed "nothing", meaning,
her white counts look good, she still needs her iron for her hemoglobin count
being a little anemic and the x-ray looked fine (not like you and I but good for
Cami) We will stay the course with the predizone and be seen in two more weeks.
She ate a taco with Dad on the way home from Chipotle's (she loves that place)
and lemonade then took a nap. VERY NORMAL... I wish I could always say that!
6/12/07 - Well, She is officially a
first grader, kindergarten ended yesterday sooo she is in first grade. We are
almost done with a few of the medicines, 4 taper down and end on Thursday 6/14
HORRAY!
We are also trying something new with
her O's, she is using liquid oxygen - hummm... yeah, me neither, but the tank
that she will be using will be more "portable" (or for our military friends -
deployable) lasting 11 hours, not the 4 that the other tank was lasting, which
will be great for school in September.
****
6/7/07 - Cami went to school! She
made it all the way through afternoon kindergarten. Of course, I stayed for the
first half and BJ came and played with her and her friends for the second hour.
Everyone was thrilled to say the least to see her up and back at school, even
the principal, Mr Zimmer, came out of his office and said welcome back. We are
still working on many medications morning, noon and night, but every day I pray
that she does something she hadn't done the day before, and God always answers
my prayers!
***
6/6/07 - One year anniversary of Cami's lung biopsy. It's been a long year.
Today we had an appointment with Dr Mogazel as a follow up to being in the
hospital on a ventilator. He said that she's doing quite good because he
expected her to be still in the hospital. "that's why I chose Pediatrics, Kids
bounce back and want to feel better so fast"
The plan is to taper down on some of
the 14 medicines that she is on, including bringing the steroid down to 10 mgs
per day and to stay at that dose till our next appointment. 6/18/07 Let's hope
all goes well between now and then.
***
6/4/07 - Cam IS Home!!!! She
put on her Hello Kitty bathing suit and went to the pool. She didn't get
in because she's not steady on her own two feet because of the meds...but before
too long there was a thunderstorm and everyone had to get out of the pool.
6/3/07 pm - Cam is coming
home!!!!!
am - Cameron is doing very well, she got
see her sisters yesterday, had Chinese food for dinner - a picnic in her room,
NOT PICU. Cami is doing so well that we think she will be coming
home today. We are going up there to be The Diamond Family Five and
hopefully all come home together.
***
6/2/07- Cam is doing great. She
is eating strawberries, drinking milk and doing really well. She
does have quite the 'bed head' though :) The antibiotics have been
tapered back and she is only taking 1 lt. of oxygen which is what
she required at home prior to her hospital stay.
****
6/1/07 - Yesterday was an Avery big
day!!! First of all, it was her 7 years anniversary of diagnosis for her
leukemia. YIKES however, I will now remember 5/31 at the day that they took her
breathing tube out 10:30pm!! and she was great. I know she had lots of CAM POWER
pumping through her... each doctor that comes in to see her thinks she is
stronger every time they look at her!
****
5/30/07 - Your prayers are working! She
seems to be stronger than ever, asking for milk, popcycles and wanting to sit
up, all while sedated and a breathing tube down her throat... You and I couldn't
do that!
Everything is going in the right
direction still, they even tried to stop the positive breathing for 5 minutes
and she did pretty well on her own (still getting o's but breathing on her own -
for five minutes) the tube is still in but there is talk of it coming out soon -
tomorrow? Friday? maybe but soon, keep praying!
5/29/07- "Everything is going in the
right direction" said more than one doctor today!!! Her lungs have very
little reserve said Dr Mogayzel (or as Cami likes to call him Dr Gamayzel - Dr
Amayzel Gamayzel) so this is going to her longer to recover but everything is
going in the right direction!
I am spending days with her and BJ is going to spend nights
while working during the day, coaching Amanda's softball team after work (yes,
he is amazing, that is where Cami gets it!)
Cami had her NG tube (nasal feeding
tube) removed today, so she is much cuter! All her nurses think she looks
adorable and they haven't even seen her awake!
Again, Miracles do happen. I am sure
of it, I see little ones everyday. Thanks for all your thoughts and
prayers!
***
5/28/07: Last Tuesday we took Cami to
an appointment because she "just wasn't right", she needed more o's and seemed
better. By Wednesday night, BJ took her to the ER because of her increase
need for oxygen (3.5 liters) and a fever, by 3am Friday, we were in PICU and
sedating her for a breathing tube. The doctors at Johns Hopkins are
determining what infection she has by ruling out everything, so she is on 4
strong antibiotics, and so far nothing has grown. It very well could be a
viral infection that her system "just couldn't fight on her one". Her
pulminologist said that he would change medications if she wasn't getting
better, so we read that as "she is getting better" we will be in ICU for a while
(days? weeks? we don't know) but she daily seems ever so slightly stronger,
please keep wearing your CAMPOWER, it is working.
Thanks for all your thoughts and prayers.
***
5/2/2007: Cami went to Johns
Hopkins on Wed 5/2/2007 for a regular pulminary appt.
Because BJ and I decided that the med CellCept wasn't
working, she was now going to try using Cytoxin in a low dose for anti
inflamitory dose.
***
5/1/2007: Web site up and running.
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