May 26, 2008
Just a quick note to let
everyone know that Alex's platelets are back up to 75, as of last Thursday.
Still have no idea what's causing the low platelets. All we can do now is
keep our fingers crossed and stay positive. 8-)
May 7, 2008
So this is basically how I'm feeling tonight... I feel like
running around screaming UNCLE! I give! Go pick on someone else!
I received a call earlier tonight (or last night, since it's 1am
Wed now) from my sister telling me that our mom is in the
hospital. She was having pains in her chest earlier that went up
into her neck. When our dad got her to the hospital, her blood
pressure was 222/138! They started her on a nitro drip and ran
all the necessary tests. My immediate reaction was to tell my
sister that I would catch the first flight down in the morning
since the kids are at Todd's this week. My parents are finally
in the process of moving up here to Gig Harbor this month. The
last thing we needed if she were to be released was for her to
go home and start packing again! While I was looking at flights
I got a call from my Dad basically telling me he'd wring my neck
if I came down. He made the point that I'm taking care of one of
the most important things to my mother up here and if I come
down there to take care of her, instead of staying here in case
Alex needs me, that that would stress her out to no end. It
doesn't happen very often, but for once, I had to admit that he
was right. So here I sit, unable to sleep, banging my head
against the wall screaming, uncle! It's really a good thing that
I don't drink. So far, the tests have shown no sign of heart
attack or stroke. My Dad has assured me that they have gotten
her blood pressure under control and that they would only be
keeping her overnight.
On to Alex... There have been (dare I say it) no more bleeding
issues since last week. I spoke with Doug Monday and we have
decided to go ahead and do the IVIG. This is one of the biggest
shots in the dark we've ever taken and the chance of it doing
anything is slim and none. But, it can't hurt her and at this
point, we'll take slim and none! She will go in to Children's
Friday at noon. She'll have an IV placed, blood counts drawn,
and then they'll start the 4 hour infusion. I have no idea how
long it will take after that to see results if we are going to
see them. Remember, I'm out of practice, so I didn't ask. Don't
know why, I just didn't. I also don't know what we will do if
she needs a transfusion on Friday. I would think that we would
give it to her, but then we would have to wait until those
platelets died off to know if the IVIG is working. Boy am I
rusty! Loopy and rusty! UNCLE!!!
I didn't mention it in my previous update and I should have...
Alex knows that something is wrong with her bone marrow not
making platelets. She does NOT know the gravity of the
situation, nor do we want her to know! Please keep this in mind
if you see her, talk to her, send her anything or write her an
email. Please do not treat her any differently than you would if
she were healthy. I can not stress this enough. She went through
the first 5 years of her life knowing that we were fighting for
her life. Now, after her wonderful 5 year break, she's an
obliviously happy girl without a care in the world and we want
it to stay that way for as long as possible.
I am going to go try to shut down my brain now... good luck with
that! Thank you again for all the emails, cards, phone calls and
hugs when I see you around town. They mean the world! Please
pray that our shot in the dark works on Friday, because if it
doesn't... Well, to say we're up a creek would be the
understatement of the year. If you would also add my mom to your
thoughts and prayers I would appreciate it. I turned 39 last
week and I still feel like just a kid that needs her mommy. She
is one of my best friends and I don't know how I would ever make
it through any of this without her love, wisdom and support.
Thank you all again, for everything.
May 3, 2008
I'm here for my forty lashes, or am I up to 120?! Things have been very busy
around here the past year and we have gone through many changes. This is not
going to be an easy update to write and I'm severely out of practice, so
please bear with me as I'm probably going to stumble through it.
I'll start with the beginning of last year...
Todd and I decided that while being great friends is nice, it doesn't make a
marriage. We spent too many years focused on other things and not paying
attention to all the things needed to keep up the intimacy that a marriage
requires. We thought that it was best to separate while we still had a
friendship. We were very careful with how we handled this with the kids to
try to impact them in the least negative way possible. We decided to rent a
place just up the road from the island and Todd and I took turns staying
there. The kids stayed at the beach and the two of us moved back and forth
spending one week and the cottage alone and one week at the beach with the
kids. This gave the kids time to get used to the separation without the
stress of having to leave their house. We did this from March to the end of
July when the kids and I went on a cruise with my family and some friends.
Todd took that week to get all his stuff moved over to the cottage so the
kids didn't have to be there to see daddy move out. Once we were home, the
kids went to the cottage for their first week and have been alternating
weeks between the two houses since then. It has gone very smoothly and they
have been troopers through the whole thing. Todd and I have been able to
remain focused on their needs and have continued to work together to keep
things very amicable for their sake.
Over the past few years, Alex's growth had come to a standstill. Last year,
she started having severe problems and started to look like she was on
steroids. She started gaining weight at an alarming rate, all in her face
and upper body. All while having no change in eating habits - ie. she was
still eating like a bird. They started doing tests thinking that she may
have a pituitary tumor. After a summer filled with MRI's and blood tests, no
tumor was found. They did find that the pituitary was not functioning
correctly and started her on growth hormone shots. This started helping
almost immediately and she started to grow again and the weight started to
come off. Since starting on the growth hormone in September, she has grown 3
inches and has maintained the same weight. This has made a huge difference
and she's looking great!
Nick has also been doing great. He is still the ultimate human pinball
machine and rarely sits still for longer than 2 seconds, but he is thriving.
He had surgery last April to lengthen both Achilles tendons. He was a toe
walker like Todd and Alex, but unlike them, he had a hard time standing flat
on his feet and couldn't pull his toes up past that point. The surgeon felt
that it would be a waste of time to try to cast him because he would find a
way to get up on his toes inside the casts and we would end up doing the
surgery anyway. So, straight to surgery we went! We were warned that he
would be in quite a bit of pain after surgery and the recovery would be
slow. Boy were they wrong! The night of the surgery he was already up and
moving around. By the end of the first week after, he had figured out how to
run in the casts!!! The doctor was and continues to be amazed at his
recovery. He is still a very skinny bean pole weighing all of 37 pounds
while being 43 1/4" tall - that's 10th% for weight and 40th% for height!
Thank God for adjustable waist pants!
In September, Alex started 3rd grade at her new school. She had done very
well last year and we felt she was ready for the move. She has done very
well and has made some great friends. Both kids have been loving living at
the beach and it's been a great learning experience for them. Every time we
go down to the water it's a new marine biology lesson in the making! One of
their favorite things to do is collect crabs in their red wagons all day and
then at the end of the day we have the "crab release"! It's the funniest
thing you've ever seen! Hundreds upon hundreds of little crabs running this
way and that hurrying to find shelter! We also have sand dollars. More sand
dollars than you can imagine! Did you know that a live sand dollar has
purple "hair"?! They're really cool looking! Alex has taken up snorkeling
and it doesn't matter how cold the water is, she's always up for a snorkel!
I've stalled enough, so now it's on to the hard stuff...
April 1st, we celebrated Alex's 5th year post 2nd transplant anniversary! We
were thrilled. If you had asked us 5 years ago, we would have never thought
that this milestone would be possible! Unfortunately, our elation was short
lived. On April 2nd, I called the clinic to get the blood test results from
her 5 year studies. Her platelets, which had never gotten into normal range
(150-450) since the second transplant, instead, hanging around 140, were at
92. To say this was alarming would be quite the understatement! In the past,
a drop in platelets has always been the first sign that she was relapsing.
We immediately went in for another blood test. The platelets had dropped
even more to 65. The first "hope" was that she had developed ITP which is
where your body develops antibodies to your own platelets and starts killing
them off. As bad as it sounds, it's easily treatable with IVIG.
Unfortunately, the tests for this came back negative. The next options were
a relapse, myelodysplasia (pre-leukemia) or a secondary cancer, meaning she
had developed cancer in her donor marrow. We did a bone marrow aspirate on
April 17th to try to get some answers. The results showed that she was still
100% donor, and there was no signs of cancer or myelodysplasia. What it did
show was that she had reduced megakaryocytes which is what turns into
platelets. The conclusion is that she is in bone marrow failure and they
don't know why. We had had a few blood test where the platelets had gone
back up into the 80's and seemed to be holding, so the thought was that this
would be a slow process as it seemed to just be smoldering. We decided to do
blood tests every 2 months to keep and eye on it.
So much for great plans... On Thursday, she came home with a band aid on her
finger. She said that she had a little cut that wouldn't stop bleeding so
the nurse put a band aid on it. That night before bed, I had her pull the
band aid back so I could see the cut. It looked like nothing more than a pin
prick. I grazed it with my finger and it immediately started bleeding again.
At this point, I took a closer look at the stains on her skirt to find that
it wasn't chocolate, but drops of blood from earlier in the day. Friday
morning it started to bleed again while she was in the shower and she had a
hard time getting it to stop. Then Friday afternoon I got a call from the
school nurse. She had been working on it for about 45 minutes and had just
gotten it to stop bleeding. When I got to Alex she also had blood on her
nose. I asked her if the blood was from her finger and she told me that it
wasn't, that she had also had a nosebleed earlier. Off to get a blood draw
we went. Her platelets are now at 45. She is not smoldering and this is not
moving slowly. If she continues to drop at this rate, she will be
transfusion dependent by the end of next week. We will now be doing weekly
blood draws to monitor and the doctors are scrambling to find answers and a
treatment plan. We are incredibly limited in our options. The main treatment
choice for bone marrow failure is usually a bone marrow transplant. We have
no data to compare since there are no cases of a third transplant. She is
the lone case to survive a second transplant. I guess even being a miracle
kid can have it's down side!
So, here we are once again, scared beyond belief and wondering if we're at
the end of the road. It's been a wonderful 5 years of 'normal' life and we
have enjoyed it to the fullest. We have gotten used to not carrying the
burden of constantly worrying for Alex's life. This makes it all the harder
to remember how to deal with all these emotions and how to carry this weight
on our shoulders. Parents should not have to think about their kids
funerals! It's just wrong! I am still trying to keep it all in perspective.
We have had ten years so far with this wonderful child - so much longer than
anyone ever thought we would have. Too many of our friends have not been so
fortunate and have had to say goodbye to their kids much too soon. So as
hard of a time as I am having with all this, I am trying to remember to be
grateful for the years that we have been blessed with.
As we start this new rollercoaster ride, I asks once again for you to stand
with us and keep Alex in your thoughts and prayers. Your thoughts and
prayers have gotten her through the impossible in the past and I am hopeful
that they will do it again! Thank you for keeping up with us and I will
update you next week after her next blood draw.