February 1, 2003
Day +1
Anna is sleeping comfortably in her crib and the CD with lullabies we always
listen to when she goes to bed at night is playing. If I close my eyes, it's
like we are home.... Actually, I've gotten pretty settled in here - between
caring for Anna I spend my days reading or cross-stitching which is something I
haven't had a chance to do since Anna was born so it's not too bad. Anna spent
most of her day sleeping. Since her transplant yesterday, she has retained a
lot of water and as a result has had some trouble breathing (some fluid in her
lungs). She's been on a little bit of oxygen since yesterday afternoon. It is
normal to retain fluids after a transplant and Anna has a bad case of it also
due to her trauma on Tuesday. She has gotten Lasix, but since a lot of the
fluid she is retaining is not only in the blood vessels, but in her tissue it
doesn't flush it all out. Her platelets are getting low so she may get platelets
tomorrow. The protein in the platelets often draws the fluids back into the
vessels and then the Lasix can help flush it out. Anna just doesn't look like
herself this puffy. As of 12:00 midnight last night, Anna is also on fluid
restrictions. Today she could not have more than 400 cc (If I remember
correctly, around 250 cc or maybe it was more -is medicines so not much is left
over to actual fluids). Anna has not eaten anything since last Saturday (happy
pumping to me!:))so she doesn't have much energy. Since she is so puffy, they
want to really restrict her fluids over the next few days so they decided not to
give her any nutrition through her IV yet. The doctor assured us that it would
not hurt her to wait a few more days. Over the past three days, Anna has also
been struggling with vomiting. I couldn't hold back the tears earlier today
when she kept trying to vomit, but she just doesn't have anything in her little
tummy. Luckily, they have great medication to give so Anna slept comfortably
all afternoon. After her daily bath this evening, she felt good enough to play
with a few of her toys which was great to see. All, in all, a pretty good day
for us. Thanks for all your emails and cards of encouragement for Anna. I'm
taping all the cards to the walls which is brightening the room up. Checking on
the email is a highlight of the day - and most days I have to check several
times throughout the day - just in case....
February 2, 2003
Day +2
A quiet day here in St. Louis,
which is exactly what we want. Yesterday Anna got rid of approximately 22 cc
more than she took in which was good news. At least she didn't retain more
fluids than she already had. She is still very puffy, but the doctor was very
encouraged this morning. She had a 200 cc diaper this evening and both
daddy and
I were awfully proud. I even took a picture of the diaper on the scale - OK
so maybe the stress is getting to me - what am I going to do with a picture of a
diaper??? Well, it seemed to make sense at the time. Anna coughed and seemed a
little sick to her stomach this morning so we asked for some anti-nausea meds
right away, which kept Anna comfortable all day. No vomiting today!! Nurse
Suzanne from Dr. Rob's office (Anna's hematologist) stopped by today. It was
nice to see a familiar face. This evening, Anna woke up kind of cranky so she
got some more anti-nausea medicine - what a wonderful drug!!! Anna really
perked up and played with a couple of her toys. Playing right now isn't more
than grabbing a rattle or a small toy and trying to get it to her mouth. She
doesn't have the strength to do much more. She was looking around and I could
almost get a little smile out of her. Both Daddy and I were just standing there
looking at her. It makes us feel so good to see her looking so content (maybe
it is a drugged look, but who cares - it makes us feel good). And here comes the
biggest news of the day: in the middle of this craziness Anna has a "normal"
baby moment - her first tooth!! Like the nurse said, no better time to be
teething than when you are on heavy-duty pain medicine!!!
February 3, 2003
Day +3
Anna had another huge diaper (240 cc) over night and one this morning (310 cc!!)
- we are very proud parents :). She looks so good today. Yesterday, her arms
and legs were so puffy that she was having a hard time bending them and the skin
was stretched to the limit. I try to move her head often because if she is
facing one direction too long the fluid collects on one side and her head gets
completely misshapen. But like I said, she looks great today. She can open her
eyes too. Her eyes are completely blood shot from the Atgam, low platelet
counts, vomiting and who knows what else, but she still looks great. Anna got
platelets today. The count was 2,000 before the transfusion and 112,000 after
(which is getting pretty close to normal). Platelets is what makes the blood
clot so a low platelet count can cause a lot of bruising. They take Anna's
blood pressure every four hours and you can see bruises on her arms from the
cuff. Daddy headed to work this afternoon since Anna was doing so well. Since
the craziness of last Tuesday, Daddy has been sleeping here at the hospital.
Only one person can sleep in the room so he tries to catch some z's wherever he
can. He's pretty worn out and is planning on sleeping at home tonight to get
some much needed rest. Luckily, I can sleep pretty much anywhere so what they
call a bed here in the room works fine for me.
Thank you for all the emails
that are coming in. There are emails from people we know, of course, but also
so many from people we have never met. I wanted to share one email we received
today. I follow several kids on the Internet who are going through bone marrow
transplants and all the children I read about are amazing and give me strength
to face each day. This letter could have been written for all the families out
there in similar situations.
"I am soooo very pleased to
hear about Anna's progress. As a mother of three, I can only IMAGINE how this
must feel for you. I can only say, that the day my daughter and I went to give
blood for Anna, I truly felt like I had another little child ~Anna! We formed
some kind of a bond that day with her, and your family...I, too, check the
website EVERY day...sometimes even 3 and 4 times a day, just to get her update,
and am so excited when there is news, especially GOOD news. I tell EVERYONE!
Her progress keeps me going. I am so very proud of all of you....and
especially happy that Anna now has another chance. Please take good care of
"our" girl for us, as you DO ~you are wonderful parents~ and know that we are
all thinking of you every minute...Anna has become ALL of our concern and our
hope. I pray for your family all the time that soon you can all just go home
and continue her "regular" life. I know up until now, it has been anything BUT
regular...but it WILL be, It WILL be. Thank you for sharing your beautiful
daughter with us...maybe someday I can help save another child as Anna has been
saved by God's hand and her oh-so-generous donor...your ordeal has truly changed
my life and I thank you for the opportunity and awareness of bone marrow
donating! Because of you, I am a better person. Because of your story, we are
so enlightened. I can't tell you how this has helped our family grow. My
children have learned so much about life and about love through you. We can't
wait to watch Anna grow. She has the BEST parents ever. our continued prayers,
Anna Marie and Sicily Jo (husband Kelly, and sons Valentino and Remy)
February 4, 2003
Day +4
We are thankful for yet another quiet day here. Anna slept comfortably pretty
much all day - too exhausted to stay awake for more than 10 minutes or so.
After I give her her daily bath, she immediately falls asleep - once or twice
she has almost fallen asleep during the bath. A little diarrhea and coughing
and spitting up from the mucositis (sores in her mouth, esophagus - well pretty
much from her mouth through to her bottom). The stuff that comes out when she
spits up is so gross (there is no better word to describe it) and we have to
suction it out because it is so thick. Luckily, Anna doesn't have that bad of a
case, but it is tough anyway. Anna is still puffy from a lot of fluid, but
looking much better. She lost almost one pound from yesterday, but she is still
up about 1-1/2 pounds since we arrived on 1/20. It hits me as I am writing this
that despite her exhaustion, spitting up gross stuff, puffy from fluids, we had
a very good day.
February 5, 2003
Day +5
A very short entry today as Anna is doing very well. Her fluid restriction is
now up to 600 cc and she doesn't seem to be retaining as much fluid - actually
she is still losing weight which is a good sign. She got very mad earlier when
I gave her a bath, but is now sleeping soundly. Daddy is working and I am
getting a lot of cross-stitching done. Another good day.
February 6, 2003
Day +6
Last night we (daddy, Mormor, and I) all decided that Anna looked better than she
has in a long time. Two minutes after we had this discussion, Anna vomited.
She really didn't seem to bothered by it - it probably made her feel better.
She had a good night except she started to have some blood in her stool
(completely normal with the mucositis and low platelet count). They gave her
platelets early this morning since they had dropped down to 21 (140 - 440 is
normal). Hopefully, she'll respond as well as she did last time. It is expected
that she will have many platelet transfusions over the next few weeks (maybe
even months). The platelets always take a very hard hit and they are usually
the last to recover. Her hemoglobin had dropped to 7.2 (normal 9 - 14) so
she'll need a blood transfusion as well. Since they are still trying to
restrict her fluids they may not give her the blood until tomorrow. That her
blood counts are falling like this is expected as she does not have a working
blood making system at this point. Not until the new marrow grafts will she be
able to produce her own blood (or at least that's how I understand it). Anna
woke up nauseated this morning and got sick again. She had some medicine and
slept for about 5-1/2 hours and then woke up and got sick again. The nurse said
that this is all normal; it usually takes 7 to 10 days after chemo before the
nausea sets in. Well, of course, it stinks to see her this sick, but it will
pass and she'll start feeling much better pretty soon. We are watching her
white blood count for any changes - normal is 6 - 17.5 and Anna's has been
pretty much 0 (well, the lab report says "less than" 0.1). It will be a sign
that the new marrow is taking when the white blood count goes up. Daddy is
spending the night here in the hospital tonight and I will visit the outside
world for the evening.
February 7, 2003
Day +7
I called from home this morning to see how the night was. Daddy's response
"not so good" since Anna refused to lay still which meant the blow-by oxygen
tube wasn't close enough to her. The alarm (that her oxygen saturation was too
low) kept going off. I see it as a good sign that Anna isn't just perfectly
still anymore. I will be leaving the two of them again tonight for some more
daughter-daddy time (one more night at home and I'll feel as good as new).
Anna's hemoglobin was 5.9 this morning so she got a blood transfusion. Her
platelets went up to 57 - I'm guessing she'll get more platelets before the
weekend is over. She's had a good day so far. A little vomiting, but not as
much as yesterday. She has not gotten any extra anti-nausea medicine today, but
she gets Zofran on a schedule (same medicine she always got prior to her chemo
when she's at Dr. Rob's). Anna was awake for almost an hour earlier today -
looking around and even making some attempts to play with her toys. She's
sleeping very well right now. Her heart rate is right around 90. I had to go
out and ask what a normal heart rate is for a sleeping baby since lately it's
been closer to 120 - 130 (up to 170 or more if she is really mad - which believe
me she can get really mad!). Normal
is 80 to 110 so she's just really comfortable right now (no need for me to poke
her when it's 89 which I was tempted to do earlier...). Another good day at
Children's. Thanks for all the cards that have been arriving over the past
week. Also, thank you for all the emails - keep 'em coming!!
February 9, 2003
Day +9
I took a break from
writing yesterday. Anna did have a very good and quiet day. Still has the
problems with the mucusitis - her biggest problem is that she'll cough some of
the mucus up, but then immediately tries to swallow it. Never thought I'd say
this, but I wish I could teach my little girl how to spit!! The only thing I
can do now is suction her mouth which she hates. She had a good night even
though her oxygen saturation would drop and the alarm would sound. I kept on
getting out of bed so I am a little tired today and will have to be sure to make
time for a nap in my busy schedule. Anna's platelets were down to 14 today so
we're waiting for the platelets to come up. (Just to clarify, when I say that
she has a count of 14 today it's really 14,000, but they just refer to it as
"14" - just so you don't think poor little Anna just has 14 little platelets
swimming around). Mormor and Morfar are heading back to Kansas City today and
Daddy and I are going to try to do this on our own for a while. Oh, I almost
forgot to tell you. Friday night was very cold here in St. Louis (12 degrees).
Daddy called from home and said that he was coming in and that he would have to
wear a hat. I agreed with him since it was so cold. He quickly responded: "you
are not listening, I'll have to wear a hat" and then it hit me what he'd done. He
now looks like most the chemo patients here on floor 9 - all his hair is gone.
I must admit that I would not want to run into him on a dark street. He had
said before that when Anna loses her hair, he'll shave his just so she wouldn't
feel so bad. Of course, the funny part of this is that Anna hasn't lost her
hair and what 6 month old do you know that is concerned about her hair?
February 10, 2003
Day +10
Anna is having
another good day - or at least from my perspective she's having a good day. If
she was writing these updates she'd probably write: "Today was no fun at all
(actually the last few weeks have been no fun), my tummy hurts, my throat and
mouth hurts, my bottom hurts, every time I am sleeping comfortable (for once)
someone has to mess with me - if it weren't for the medicines they give me I'd
checked out of this hospital and gone home a long time ago. So to summarize my
day, it was very yucky." Anna finally got platelets last night. It took some
time to get them here. For those of you who often ask what you can do - give
platelets or blood at your local blood bank! If you are B- and live in the St.
Louis area, send us an email and we'll get you added to the list of donors for
Anna (that way your platelets or blood will be designated for her). If you
don't live here or you don't have Anna's blood type, please give anyway - it
will help another child or adult. Anna's hemoglobin was down to 6.2 today so
she got a blood transfusion this morning. Her white counts are still <.0. They
are not expecting a change for at least 4 - 5 days (at the earliest). Anna is
still getting small doses of chemo (she gets her last dose tomorrow) which
doesn't help the white blood count....but it'll come, it'll come.
February 11, 2003
Day +11
Pretty stressful day
for me. I spent the night at home and slept very well. Anna and Daddy had a
rough night with Anna struggling with all the mucus in her throat. Her mouth
sores have gotten pretty bad and they had to increase her pain drip this
morning. She was supposed to get her last dose of chemo today, but they're
holding off for now as it would just add to the mouth sores. This morning her
liver enzymes (or whatever it is) were elevated and her liver enlarged. I guess
after spending three weeks here and watching your kid go through hell it finally
gets to you. I cried most of the morning. I'm just plain sick of Anna feeling
so bad. You can only handle so many bloody diapers, suctioning mucus, watching
her throw up, etc.... I am ready for white blood cells and I want them NOW!!!
I usually write my updates earlier in the day, but because I've been so upset
today I was putting it off. I didn't want to write and complain about how sorry
I feel for Anna (and myself), but at the same time I want to write it
as it is. If someone who is about to go into bone marrow transplant with a
child one day reads this, I want to share everything. Even though it may be
painful to write (and read), it's better for families to know what really goes
on. This process just plain sucks. On top of everything else today, tonight
her potassium is too high and her temperature is 37.3 (which isn't really a
temperature, but for Anna who is usually 35.8 - 36.8, it's on the high side and
makes me very nervous). OK, enough of the pity party.
On a completely different note, yesterday (or was it the day
before yesterday?) the freezer here with all my breast milk broke. I had to
take it on a cart down to the NICU where they have big freezers for breast milk.
It was quite a sight since I have probably 150+, 4 oz bottles of milk (wow,
that's almost five gallons or 18 liters of milk!!! - just call me "cow").
Anyway, Daddy carried most of it home tonight in two large plastic bags - I
wonder if he got a lot of curious stares. The funny part (or maybe it is the
sad part:)) of all this is that Anna does not take a bottle - let's just hope
she starts drinking out of a cup soon. Don't know why I just shared that with
all of you, but I guess for all the pumping I do it deserves a mention on Anna's
web site.
February 12, 2003
Day +12
I'm feeling much better today so the good old me is back (well I don't know
about good and I am getting older but I am not that old - yet -- anyway, you
know what I mean). Anna was very fussy last night and it took a long time and
several different medications to get her calmed down. She slept fairly
comfortably. Her potassium level came down last night and is a little lower
today. It still needs to go down some, but at least going in the right
direction. Her liver counts were better today and the sonogram which they did
yesterday was fine. She did wake up this morning feeling kind of warm and her
heart rate was up (around 200). Her temperature was 38.5 (everything here is in
centigrade - which makes it easy for me since that's what I grew up with - but
for those of you who insist on Fahrenheit 38.5 is 101.3). Anna is usually
around 36 (less than 97.3) so it was a little high for her. A normal sleeping
heart rate for a baby is around 100 so Anna's being around 165 or higher over
night made me a little nervous. We did find out though that these are also
signs of engraftment so even though Anna felt crummy, they were signs that we're
going in the right direction which feels good. She felt really bad this
afternoon and got sick several times. Her platelet count was low again and we
had to wait all day again to get them here. It really stinks to have to wait as
her mucus that spits up gets more and more red as the day goes by (I know it
sounds gross - and believe me it is - but that's the way it is). Good news here
in the BMT unit, one of the kids, our friend Jacob got to go home today. We
hope that he enjoyed his MacDonald's on the way home!
February 13, 2003
Day +13
We had a quiet night, but Anna is feeling pretty yucky today. I won't go into
details, it's just same old stuff... and believe me it's getting old. We've
been working today on making sure we have platelets for Anna. She got some
yesterday and is getting some right now which is the last they have reserved for
her. I spoke with the manager of the blood bank here (very cute I might add)
and he told me that only about 5% of the donating pool is B- so it's not easy
for them to find platelets for her. Right now she can only get B- or AB- platelets and 0- blood.
Several people through work have volunteered to donate for Anna. Right
now I feel such a relief and am so grateful to know that Anna will have
platelets. A huge thanks to those of you who are donating for Anna!! The last
couple of times when it's taken all day to get her platelets have added a lot of
stress to already stressful days. Anyway, to the other good news of the day -
you may have noticed that I wrote that Anna can now only receive 0- blood.
Since she is B- you may wonder why she can't get B- blood, well, they are
starting to see a change in her blood type. Anna's donor is 0+ so eventually
she will also become 0+ and hearing that they are seeing changes is wonderful.
I find it absolutely amazing how the human body works.
February 16, 2003
Day +16
I've taken a few days off to write. No white blood count yet - but we're getting
closer. She did have some lymphocytes today which I guess is a good sign that
some cells are coming in. Anna had a very comfortable day on Friday, yesterday
wasn't too bad either and so far so good today. Let's see what's been going on:
Friday night, Valentine's Day, Daddy and I left for a few hours to meet up with
some friends for a drink. Mormor was babysitting. The evening was very quiet
until apparently 15 minutes before we returned when Anna soiled two outfits -
first her diaper leaked and then right after Mormor had put on a new one, she
threw up. I guess she just wanted to keep Mormor on her toes. Daddy spent Friday
night and last night here so I enjoyed two good nights of sleep at home. The
snow is coming down heavily here today. Daddy is at home and we decided that he's
better off staying there than trying to hit the roads again. The highways only
have one lane open - I must say that this city does not do a very good job
keeping the roads clear when it snows. I am about to give Anna a bath which we
have to do daily. It's a pretty long process. I only give sponge baths in her
bed as we can't get the dressing for her Broviac wet. After the bath, we have to
put lotion on her as well as anti-bacterial cream on a few sores she's developed
on her skin and anti-fungal powder under her neck. It's been so hard with all
the fluid she's retained to keep the neck area dry. It's so red and looks very
painful. Anna is also bruised all over - she looks pretty beat up. Many babies
going through this also often end up with a very sore bottom. I've been getting
high marks from the nurses in this area as Anna's bottom looks good without much
break down.
...a few hours later: I gave Anna a bath (and she didn't even
cry which is unusual and is a good sign that she was feeling OK) and she is now
sleeping. She's not as puffy from fluid retention as she was so she looks so
tiny -I can tell she's lost weight. The doctors keep telling us that she's
doing great - I sometimes wonder if we're talking about the same kid as she
really doesn't look that great to me. But we're thankful that they say she's
doing great (even if it's just on paper for now). Speaking of doctors - Saturday
morning when Daddy was here a new doctor came by. The doctor's question to him
was: "how are her spirits?" When he called to give me an update and told me
about the doctor's question I laughed harder than I have in a long time. Here
you have a kid that has had heavy duty chemo, has no working blood making system
at this point, is on heavy-duty pain medication to try to make her comfortable,
sleeps 23 hours of the day because she is completely exhausted and the doctor
asks about her spirits!!?? I find the question completely hilarious in our
current situation. Please note that I am not trying to be disrespectful to the
doctors - I just found it so funny.
February 18, 2003
Day +18
I had hoped to begin today's entry with the good news of the
arrival of some new white blood cells, but unfortunately they have not arrived
yet. Anna has had a good day so far. She sat on Mormor's lap for 2-1/2 hours.
Her temperature was 38.3, but an hour later it was back down to 36.9 - I guess a
little too much cuddling with Mormor. No vomiting, no diarrhea and not a lot of
crying today. I just changed a diaper (40cc if you're wondering) and she didn't
even wake up. She is usually a lot more sensitive and gets upset with diaper
changes. She didn't mind either when I put some lip gloss on her (OK, so it's
just Vaseline, but I refer to it as lip gloss to make it a little more exciting
for her - you know how girls are, they like that stuff). Right now she is
sleeping very comfortably with her arms stretched out - doesn't seem to have a
pain or ache anywhere. Maybe tomorrow I'll write about some new cells.
PS-
Here's a warning to all the breastfeeding moms out there: If your breast pump
seems to be malfunctioning - do not (and I repeat DO NOT) remove the pump from
your breast, increase the suction to maximum, and then immediately return the
pump to your breast - ouch!
February 20, 2003
Day +20
No counts yet. I'm getting very stressed even though the doctors tell me that
they are not worried. Many signs show that Anna is improving - the sores on her
body are healing, the redness under her neck is going away, Bilirubin (liver) is
going down, mouth sores are not getting worse and we've not had to increase her
pain medication for several days now - but it's baby steps in the right
direction and hard for me. I guess I'm ready for bigger steps. She pretty much
sleeps all day long. She was awake for about 15 minutes and watched some Baby
Mozart on TV, but she's pretty drugged up so I'm not sure how much she is really
aware of her surroundings - yet another thing that is hard. She will be getting
platelets (down to 52) and blood (down to 7.1) this afternoon. She's had blood
in her diaper today so I hope it's just because of the platelet count. She's
still restricted to 600 cc of fluid per day - which will go out the window today
since she needs both platelets and blood. Hopefully, she can keep up with all
the extra fluid - I'd hate for her to get puffy again. Her temperature has been
bouncing up and down over the past couple of days, but so far not any higher
than 38.4 and it comes down on its own without the help of Tylenol. Her heart
rate is also sometimes on the high side (around 180 when she's sleeping). They
say this is also a sign of engraftment. So in summary, nothing fun going on
here.... Big thanks to all of you out there who have gone to donate blood and
platelets for Anna - it is so nice not to have to wait for her blood products.
Also big thanks for all the emails and cards. I wish I could respond to all the
emails, but surprisingly it gets busy around here so when you do send us an
email, know that we loved reading it and appreciate you thinking of us.
February 21, 2003
Day +21
I had a nice, quiet evening at home while Daddy and Anna had a busy evening
here. She got her blood late (not because it wasn't here, but because they had
to fit in all her other meds too) and transfusions always call for frequent
vital signs so not much sleep for Daddy. He slept during the day today at home,
and no blood products are planned for tonight so they should have a quiet
night. Anna had a pretty quiet day - she got fresh frozen Plasma today. She
didn't really respond to the platelets from last night so they wanted to give
her some FFP to make sure the bleeding in what seems to be her stomach (the
blood in her diaper) stops. She had some blood in her diaper today, but it was
old blood and not new which is very good. Earlier this week she did get some
platelets that she responded very well to (jumped from a count of 21 to 112).
Luckily, the Red Cross was able to track down these donors and both are now
direct donors for Anna. Thanks to Pat (one of Anna's direct donors) and to the
unknown donor out there! We are still stressed about Anna's lack for white
blood cells, but the doctors are doing a great job of stopping by frequently to
let us know that they are not at all worried. I even received a gift
certificate from child/life for some spa time - I guess the word is out that
Anna's mom is stressed. We are surrounded by some wonderful doctors, nurses and
other staff which we are very thankful for. A special thanks to the nurses for
not caring only for Anna, but for us as parents too!! Baldy is sitting here
next to me so I think I'll spend some quality time with him before I head back
home for the night. He really likes his shaved head. He just looked at his own
reflection in the window and said "Man, I look good!" so I guess I don't have to
give him any compliments to increase his self-confidence.
February 23, 2003
Day +23
For about 25 days now Anna's white blood count has been less than .1. The last
week, I hoped for a change each morning. The nurses come in to take blood for
Anna's daily tests at around 4:00 a.m. This is also the time that Anna is
weighed and as you can imagine is not popular with the little patient. As Anna
settles down and I am trying go back to sleep, I wonder about the blood
results.... Over the past week, I've been telling myself as I lie here in the
dark "it's OK if her count isn't there yet" - I never feel OK about it, but I
try to convince myself all the same. As each morning went by and no count it
became harder and harder to stay positive. Last week I had two mornings when I
just had to cry - the disappointment is so great. The average time for the
counts to come back for a bone marrow transplant from an unrelated donor is
about 18 to 22 days. Today, on day +23 Anna's white blood count jumped from
less than .1 to .2. She does not have an ANC (absolute neutrophil count -
body's ability to fight an infection), but we'll take the .2 as a sign that we
are going in the right direction and that the new marrow has found its place is
is beginning to work. It feels so good. The average day to see a count may be
18 to 22 days - we've seen a change at day 23 - we always knew that Anna was not
an average little girl!!!
February 24, 2003
Day +24
Anna's ANC was 80 this morning which is very exciting. Unfortunately, Anna
hasn't felt like celebrating. Her mouthsores are really bothering her and
causing her a lot of pain. She's bleeding off and on in her mouth and even a
piece of the inside of her cheek is all torn up and hanging loose. She's also
trying to cough and get rid of some mucus from her throat and maybe stomach, but
it hurts her so when she coughs. They increased her pain medication today so
she is fairly comfortable right now. This may all be a sign that the new cells
are going to her mouth and throat and trying to heal her. For Anna, this is a
very painful process. It's hard to describe what Anna's mouth looks like.
Another mom described her daughter's mouth as "chopped liver" and I now
understand and think that it is a very good description. Luckily, we
have seen these sores develop over time - I don't think I'd do very well if I
had walked in today and taken a look at her mouth. Well, no one ever told us
this was an easy process.
February 25, 2003
Day +25
I just got back from a one-hour full-body massage. I've never been before, but
I will have to find time to go back for more as it was very, very nice. Anna's
ANC was up to 120 today so it's heading in the right direction and white blood
count up to .3. Her Bilirubin was slightly up again today so they did an
ultrasound - won't know about the results until later today. Also, she's
struggling with fluid retention again. She got platelets early this morning,
had a little bit of a fever and high heart rate, and her mouth is really hurting
her and bleeding. The doctor that came in to check her mouth early this morning
said that as bad as it looks, we probably won't be able to get her 100%
comfortable today. She did get extra pain meds this morning, but it just wasn't
taking the edge off. It's now around 2:00 p.m. and her heart rate has been
going down and she seems to be resting better. Hopefully, she'll stay calm for
the rest of the afternoon and evening.
February 26, 2003
Day +26
Anna's white blood count is up to .7 and her ANC is 399!! We're very excited
about the jump. Yesterday was a rough day. She had a fairly quiet afternoon, but
by evening her mouth was bleeding again. She had a big chunk of tissue come out
which was awful. It was the first time I actually had to step out of the room -
I just could not take it. She got FFP (fresh frozen plasma), but didn't need
additional platelets. She has another piece of tissue hanging fairly loose this
morning so I bet it'll come out too. It's all just horrible. No platelets so far
this morning, but she'll probably need them by this afternoon/evening. Her temp
has been right around 38 (100) or higher lately so of course that doesn't make
her feel any better. She's still dealing with fluid retention. Her liver
ultrasound was normal yesterday which was good. She had an x-ray on her chest
this morning - x-ray looked good - no fluid in her lungs. The kidney doctor was
here and was confident that Anna would be able to get rid of the extra fluid
with the help of the medicines she is getting. I'm hoping for a big diaper this
afternoon. Anna has been sleeping well so far today. She's back on some blow-by
oxygen again - don't know if she needs it because of the extra fluid, the mucus
in her mouth, or whatever, but it makes her feel better.
February 27, Day +27
Anna's ANC
was 439 and WBC (white blood count) .6 (it was .7 yesterday, but that's not
anything to worry about and is completely normal). Anna's main problem is still
her mouth and fluid retention. Her liver is also enlarged which is probably our
main worry at this point. It could be a side effect of engraftment. It could
also be GVHD (graft versus host disease) which is where the new marrow sees Anna
as foreign. GVHD can range from mild to very serious. I have a knot in my
stomach.... Last week we were told that as soon as Anna's counts came in she
would start feeling better. We haven't seen that yet and it is very depressing.
