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NOVEMBER 2002
Cierra is starting to have pain in her legs
and although the CT scan is clear, I am worried that it could be something. Dr. Grupp says not to worry yet.
DECEMBER 2002
As the pain gets worse and her platelets
start dropping, we start doing some tests. The CT scans are still clear so we do an MIBG scan (a new form of bone scan to
check for cancer in the bones and marrow.) That comes back clear. We are sure she's o.k. but what's wrong then? We decide
to do a bone marrow biopsy to completely rule this out. The results come back immediatly.
Her Relapse....
DECEMBER 30, 2002
Her bone marrow is so full of cancer they
can't even get a sample out. From there, a bone scan confirms it is in her bones and she didn't respond to the MIBG test.
We start chemo, Topotekan/Cytoxan the next day.
JANUARY 2003
We go home after five days of chemo and she feels 100% better. We know
that they told us that there is really no chance of a cure at this point and the chemo is only for comfort measures. But that's
not good enough so we research so clinical trials in hopes to find a cure!!
FEBRUARY 2003
As we are about to go in for our next chemo, Dr. Grupp calls and says
there's suddenly a new treatment option available but we only have a few days to decide if we want to participate. It's an
antibody study(HU14.18/IL2) and it's only in phase I (phase I determines toxicity of the drug in humans, phase II is a dose
escalating phase determining how high of a dose a human can handle without adverse reactions and phase III monitors
the tumor's response to this drug. After this, the drug is then released to the public, FDA approved.. or not.) We will be
one of, maybe, 15 kids to ever get this drug combination in North America but it sounds hopeful without too severe of side
effects so we do it.
MARCH 2003
Her bone scans and bone marrow biopsies are looking good. The bone
marrow after only one round of chemo is NED (no evidence of disease) and the bone scan after one round of antibody is drastically
improved! The drug causes pain in her legs, really high fevers, and her blood pressure to drop but only during the 5 day infusion.
It's scary but may be worth it.
MAY 2003
She's still doing pretty good but then starts getting unexplained fevers,
excrutiating pain in her legs, and platelets are dropping (it sounds all too familiar of when she relapsed) so more tests
show the cancer is getting worse again through the treatments. It is not responding to treatment. We stop the antibody drug
and start chemo again that night in an attempt to get her back into comfort. For now, we will do the chemo and hopefully she
can, again, achieve remission!!
The search for a cure continues...
MAY 2003
As some of you know, we were back in the hospital for a couple of days.
Cierra has two positive blood cultures, so we are now doing antibiotics at home through her port til her counts come up (her
ANC is still at zero, which means she has no immune system now.) We also found out today that both of Cierra's hips are fractured.
Not sure why, possibly frail bones due to all the chemo but to do surgery and put her in a body cast for three months is not
an option. The fractures aren't that bad so we will try to keep her off her feet and hope they heal on their own. We meet
with the orthopedic surgeon next week sometime.
JUNE 2003
We were back in the hospital for a week or so. Her blood infection
came back and this time she became pretty sick. We spent the night in intensive care and then went to the oncology floor the
next day. She recovered pretty quickly. We've been doing IV antibiotics at home again (a different, stronger one) and since
they stopped her fever has not returned. Her counts are coming up which means she can be around people again, so we went to
school this week! Although it's the last week of school. I'll bet she's the only kid who's upset that school's now over for
the summer, huh?! Her hips are fractured but they are not too bad and hopefully they will heal on their own. She only hurts
when she puts weight on them. We are planning for her birthday party and a trip to OCMD. We plan to hold chemo til the end
of June to have a good, healthy month!
JUNE 13, 2003
Well, this day four years ago, I found out my daughter had a football-sized
tumor in her abdomen and immediately went to Hershey Medical Center for one month straight! I thought that was bad. Little
did I know what we were in for... Here we are, thank God, still battling this disease 4 years later! Funny how I say thank
God, huh. but you know 4 years ago at this time, I didn't expect the day to come when I would be planning a 7th birthday party
for Cierra. And each year that goes by, I plan a huge, exciting party for her not knowing what may happen next and every passing
year there's another party to plan!! So yeah, maybe she's not still in remission and maybe her chances are slimmer than before
but she's already beaten the odds as far as I'm concerened and she can do it again!! So, I say,"thank God!" And in 2 days
my little girl will be 7!!! And she'll be home to celebrate her birthday with her firends and family, not in the hospital
or anywhere else and She feels really good! So Happy Birthday to Cierra and many, many, many more
to come!!
I saw this interesting poem on the neuroblastoma pages and wanted to
share it, only this time it's about me rather than Cierra. Everyone always asks how I do this, I must have strength "like
a rock" well, not a rock but an egg actually...
why?
The Strength of an Egg
by Juliet Freitag
An egg has a polished, smooth outer appearance with no cracks or weak
spots visible. It is almost inconceivable that the inside might not be so smooth or solid.
Most children, at some point, are shown the famous egg trick. An egg
set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet, the same egg,
tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling
out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it
is almost impossible. If you suceed, you will find that there is nothing inside but more rock.
It takes a lot more than pure hardness to hold the hand of hope. Parents
of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing
act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctor's visits and hospital
stays and holding onto the very constant unraveling ties of your sanity can be very tricky, indeed.
Occasionally, the angle will be off and the shell will break, shattering
hope and all the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty though, parents of kids with cancer will pick
themselves back up and put themselves back together again!
JULY 13, 2003
As some of you already know, we are in the hospital. We came to the
E.R. Sunday morning at about 2:00am and from there, we went to intensive care til Thursday morning when we finally got moved
to the regular floor. Cierra's doing ok now but she has a serious infection in her blood. We don't know what it is because
her blood cultures are all negative but when we came in, she was in "classic" sepsis symptoms. She had a high fever which
wouldn't break, her blood pressure was quickly dropping (even on three different pressure meds) and her heart rate went up.
Her kidneys started slowing and as her heart swelled up, it's functions decreased. Things started to clear up and went in
the other direction. Her blood pressure became very high, her heart rate was dropping( normally when your blood pressure goes
up, your heart rate does too.) She had excrutiating headaches and her platelets were low. These all looked like symptoms of
a bleed in the brain so we were immediately taken for a head CT scan! It showed up fine!!! As that problem resolved, we had
to remove an infectious blister off her leg which is due to the blood infection. She is now on three to four IV antibiotics
as for some reason her cultures are negative, so they don't know which are appropriate since they don't know what they are
treating. She continues to have fevers. She also continues to have allergic reactions to, who knows what, noone can figure
it out. She is on three different antihistamines, none of which are working. She is off to have a chest X-ray shortly as her
lung sounds are decreased and she's been needing oxygen. We just found this mass on the side of her abdomen which the Dr.'s
are pretty sure is not tumor and think it is superficial (right under the skin.) We will possibly have a CT scan tomorrow
to see what it is since it is causing her pain. She is stable now and although something new pops up each day, she seems to
be getting better each day. We will be here a while (at least til her counts come up if all goes well otherwise.) Keep
Cierra in your prayers and hope for a speedy recovery!!
JULY 16, 2003
Today Cierra is feeling much better, although she still has low grade
fevers. We started her on an antibiotic for a fungal infection in her lungs but don't know if thats the case since you need
a white cell count for it to show on a scan (she has no white count now from chemo.) She is staying on other antibiotics for
the blood infection also til her counts come up. We had our CT scan yesterday and there is no tumor in her stomach, YEAH!!
It's just fluid in there. Her hives have seemed to go away and all looks like it's heading in a good direction. Tomorrow we
get our bone marrow biopsy to check on tumor in her bone marrow. If that comes back good, then they will give her back some
stem cells ( that they still have saved from her transplant in 1999) to boost her "wimpy" bone marrow. Otherwise, the cancer
is causing the bone marrow to recover so slow. But hopefully the chemo has cleared that out!
JULY 17, 2003
We had the bone marrow biopsy today and just received the preliminary
results. Her aspirate was clean of disease!! This is excellent news. Although we have to wait a few days
for the biopsy results which could still come back positive, at least we know its not packed with cancer cells like before.
So we continue to have good news and Cierra feels much better each day!!
JULY 22, 2003
We came home from the hospital today! Her bone marrow biopsy did show
some cancer cells, less that 5%, which is still pretty good news. At least, she's responding to treatment. She had a CT scan
today to check for a fungal inferction since her counts are up and that looked fine. We didn't get out til 10pm because of
some question with her liver. Based on the CT, they tell me the disease (cancer) in her liver is getting worse... what disease
in her liver??!!? As far as I know, there is no cancer in her liver so we go home not sure if we should be happy or not..
her Dr. is away so i'll wait to talk to him before getting too concerned.
JULY 24, 2003
Dr. Grupp says not to get too worried about the liver. There are spots
there, but they've always been there. We've never been able to 100% rule out cancer but they've never grown in 4 1/2 years!
Now they are spreading, apparently. He hasn't seen the scans yet but he doesn't feel they are neuroblastoma. That's good enough
for me (since there's not much we could do anyway, she's already getting chemo.) So we don't know what it is and the only
way to be sure is to do a liver biopsy which I'd rather not unless necessary. For now, we'll do scans and keep an eye on it.
JULY 25 - AUGUST 1, 2003
Were off to the beach, Ocean City New Jersey! Cierra's doing great
and having fun, doing all the things other kids do at the beach. She has made a full recovery from her infection! Getting
on rides every night, playing mini golf, etc... We've had to go back into the hospital for blood and platelet transfusions
from the beach but it's only an hour from there. We plan to go in on Tueday the 5th for chemo til Friday. Outpatient in the
Ronald McDonald house. After that, she'll get her stem cells and hopefully recover faster and not get so sick in between chemos.
She's still going to have the dose reduction on her chemo but she seems to be responding fine even with the reduction.
AUGUST 16, 2003
Just thought I'd check in to let everyone know that Cierra is doing
really good. She feels good and made it to outpatient chemo without any pain!!! We are holding the stem cells since her marrow
seems to be doing a little better. If she gets her next round of chemo in "unsafe conditions" again due to her platelets,
we will give them at that point. She's still home and it's been over a week since chemo (usually by now, were in with a fever,
knock on wood.) Her counts have hit 0 but she's hangin in there. We go back twice a week for platelets and blood transfusions
at this point. So maybe we will make it to next chemo without getting sick with a fever, cross your fingers!!
AUGUST 28, 2003
Today was Cierra's first day of first grade!! She lasted the ENTIRE
day and loved it. I stayed with her today since we haven't left each othes sides in months (since relapse in December.) We
even sleep in the same bed at night. But tomorrow is an even bigger day... Cierra is going to schoo,wothout me!! She's excited
and I asm too, also a little nervous, but mostly excited. Excited that she's in 1st grade, excited that she wants to go alone,
most of all, excited that she feels good enough to do this and wants too!! The kids in her class were great and treated her
so good. they all wore hats today and the teacher read them a book called "kathy's hats" yesterday to prpare them and to avoid
all the overwhelming questions. Every last child in taht class treated Cierra normal and Cierra kept whispering to me every
so often, "I love school!" I took lots of pictures of her before school this morning and will post them when they are
developed. She's playing with a friend from school today, Sarah (who she'd have move in if she could,) and she's not tired
out at all. We are leaving after school tomorrow for the beach for the wekend. Her counts have started to come up as they
never totally made it to 0 nor did she have a fever and need to be admitted into the hospital this time! Things are going
in such a good direction now, please pray it continues in this manner!!
SEPTEMBER 22, 2003
Last week, we did 4 days of chemo. She still gets a 20% dose reduction
but that seems to be doing the job. We went in for a checkup on Tuesday and ended up starting chemo since she was complaining
f some bone pain. It was 6 weeks since the last chemo so that leaves plenty of time for cancer to progress between chenmos
but her bone marrow just doeasn't recover fast enough. She still wasn't ready for chemo but we decided to give Cierra back
her last stem cells she has on reserve. Dr. Grupp has been wanting to do this fro a while now but I have been reluctant because
she has no more stem cells and there are cettain treatment options she will now be ineligible for in the future, not to mention,
it scares me that they are not going to be aback up otionanymore. Otherwise she's still doing good. She's still in school
and enjoying life to the fullest.
OCTOBER 3, 2003
We just got out of the hospital toda. On Sunday, Cierrs started with
a low fever and sore throat. I started packing and sure enough, by the time I was done her fever was 102, so we headed to
the emergency room at CHOP. After sitting in there for 5 hours, we were finally admitted. She has a bacteria in her intestines
that she's being treated for and we assumed a virus since her cultures were negative. We were going to come home yesterday
after a blood and platelet transfusion but her blood pressure shot upand it wasn't coming down so they kept us there til it
came back down. She;s doing good again., back to her normal self already. we gave her back her stem cells last tuesday so
were waiting to see how they are going to affect her immune system (it tkaes a couple of weeks fro them to work.) For now,
we will jst lay lowand try not to catch any more colds, etc that will put us unnecessarily into the hospital.
OCTOBER 14, 2003
Hello everyone! Cierra's back in school and her counts are really coming
up. Although, her platelets are still low and she's requiring a transfusion twice a week. We gave the stem cells to help the
platelets but as of now, it doesn't seem to be working. It's been three weeks since giving them and I'm not sure if ther's
a chance of them still working. I have to talk to the D. Otherwise, Cierra still feels great. She's in girl scouts now instead
of ballet because of her fractured hips and legs tiring out. She is actually doing really good though, walking around
and jumping in the bed at night :) She made it to school for school pictures, as soon as I get them back, I'll be sure to
post one. We haven't done any scans lately which I'm ready to talk to her Dr about doing a bone scan and CT scan to see where
we are with her disease and look into a clinical trial if possible. It's hard to do that when things are going good and I
feel like we actually have a routine but this is not a curative measure and we need to do more. Thank you for reasding our
updates and keeping Cierra in your prayers.
OCTOBER 23, 2003
Well, I just got the results of Cierra's CT scan and the liver lesions
are worse! Dr. Grupp says we need to do a liver biopsy to see determine what our next step is. So we are scheduling the surgery
for next week. If all ghoes well, we will plan on staying for only one night. Leave it up to me to try to work this out around
her fall festival at school Thursday and trick or treat on friday. In my dream world~ Liver biopsy, Tuesday, go home, Wednesda,
full recovery Thursday and to school for the fall festival!!! Wake up, Shannen. We are pretty sure based on how well she's
feeling and her last bone marrow biopsy that the disease in her marrow and bones is responding well to chemo BUT it
is "possible but unlikely" that disease in her liver is nonresponsive and grwoing at the same time. ( we go tomorrow fro a
bone scan also.) Her liver function tests are al fine. Her liver is swollen and hugewhich has been that way for years now
and she's actually had these spots fro years but they were getting better til a couple months ago. Could these spots have
been cancer all along and lay dormant in her body til recently?? It's hapened before in other children but generally not in
stage 4 from ehat I understand. I don't know what to think, my mind is a mess. I sit here and try to convince myself that
this isn't NB, all the signs point to it not being, but then what is it???? And whatever it is, it can't be good. Is this
a no win situation? I don't want it to be NB but on the other habd, i don't want it to be something else either. as far as
the surgery goes, it's a pretty routine procedure with the main risk being bleeding, of course, Cierr ahas platelet problems
anyway (platelets make the blood clot and stop you from bleding to death) and they plan on giving her platelet transfusions
and doing everything they can to contrl the bleeding and help her clot. But it has to be done. Otherwise, Cierra is still
feeling really good and I told her she has to have this done next week. She shed a few tears but quickly was back to herself,
ready to go to the mall:) I, on the other hand, am as nervous as can be. Just when I start to relax a little and think how
good things are ~ BAM~ it rains on my parade. Please pray for Cierra!
October 30, 2003
Today I am waiting for the results of Cierra's liver biopsy. She was
admitted Tuesday morning at 6am for the surgery. She was put to sleep for it and we saw again at 2:30pm. The surgeon
said she did well and they got out two good pieces of the liver that definitely looked abnormal but she couldn't conclude
what it was. We should hear from the Dr. by the end of the day tomorrow! Meanwhile, I'm going crazy!!!! She recovered from
the surgery with a sore throat (from the breathing tube) that resolved today and sha has some pretty bad stomach pain. She
is having really bad pain in her legs and will not even stand up. WE intend on starting treatment on monday but I'm not sure
what that willbe yet as we don't know what's going on with the liver. She needs chemo to make her legs feel better! It's crazy
how she goes from so great to so bad in just a week but hopefully she can get back to feeling better soon after the chemo
starts. She's getting higher doses of morphine now so she is very unreasonable and emotional which is making things very hectic
and stressful around here. I run around like a chicken with it's head cut off trying to pleae her but to no avail. Well, on
a good note.. we did make it to her school party today and still plan on trick or treating tomorrow, in a stroller, of course.
I will update with the results as soon as I get them. Hopefully my next entry will be excellent news!!
HAPPY HALLOWEEN
Ocober 30, 2003... again
I don't even know what to say... Cierra's liver biopsy results are
back. There is tumor in her liver. I am devastated to say the least. I am speechless. I don't know what to say. Surgery is
not an option but we will try another treatment starting Monday. I don't know what we'll do at this point as I couldn't even
think or speak to ask the Dr. At least I trust him! I know he will not give up on Cierra til he has used every last option!!
This needs to sink in. The reality of it is that she already has cancer so why am I so devastaed? Why am I so shocked?? It's
so hard to stay positive when for every bit of good news comes a handful of bad. Can we just get a break...after 4 years of
this.. how much more can we handle... Cierra is my strength, my reason to wake up every morning!! I don't go to church regularly,
as of now, but it is time.... I am asking for a miracle, begging for one. Miracles happen all around us every day! I see that
this is in God's hands now and we need all the prayers more than ever. I don't know what to say... I am sick.
November 4, 2003
Hello everyone. We just got back from the hospital today. Cierra started
her chemo Monday. It was only a two day cycle of Carboplatin and VP16. Two heavier duty chemos that she was previously on.
Her risks of infection are higher due to this chemo being stronger and it will really make her blood counts drop. I heard
some bad experiences from other parents and was really worried about doing this chemo since Cierra already has problems with
infection and platelets. I had a long talk with her Dr. on Monday before starting and now understand his decision to do this
chemo combination. Although there are other, gentler chemos we could try that may work, we don't know for sure. Her disease
seems to be getting worse somewhat quickly due to her extreme pain, large stomach and visible tumors on her forehead and neck.
He feels that this chemo is more likely to work than the others even though it's risks are grreater. One of three things
will happen now: she will respond to this chemo (we should start to see her feeling better within the next 10 days, which
would be a pretty good sign that it's working), her disease will not respond to this chemo but will grow slow enough that
she can try something different (we have to wait for her to recover from this chemo beofre trying something else, even if
this oesn't work), or her disease won't respond and her tumor will grow to fast in which case, she would not make it to another
treatment. I am trying to stay positive and hoping and praying that this chemo works. Her liver function tests are all still
normal which is a good thing but her liver is very big and her sides are gulging out. She is feeling more comfort now that
Dr. Grupp said we can give her as much morphine as she needs to keep her comfortable. We did go to church on Sunday and it
felt good. They had a special prayer for Cierra where everyone went up to the alter and got on their knees and prayed for
her. I am having a tough time with things now and I kind of go back and forth between how I feel... One minute I feel
glad that Cierra's here with me NOW and enjoy looking at her and hugging her and listening to her talk and the next minute
I feel terrifiedas I now know that if this chemo doesn't work, we don't have much time together at all. I quickly try to think
of all the high points and how much she's changed my lifeand how happy she makes me feel and that right now, I can hug her
all I want. This is a time to be happy, celebrate, do all those things she wants to do. We are planning on going to Disney
World again. Cierra is not finished here yet! She has a lot to do and I truly believe she is not ready to give up. Please
pray for Cierra now nore than ever, on your knees!! Thank you for all your prayers and support!
November 7, 2003
Hello! It's friday night and we went to clinic today for a platelet
transfusion. I had my bags packed with me because she's had a low grade fever and I figured they'd keep us but they didn't.
Her counts are still pretty high, so that's good. They usually drop in a week so that would be Monday. We thought she had
some bad diaper rash because her butt (tailbone) really hurtsand is all red but the Dr.'s say it's bed sores. So we got her
a jelly pillow to lay on today because it hurts so bad she can't even lay down. They said if it continues to get worse, it
will be hard to heal...because of her counts dropping from chemo. As far as everything else.. she seems to be feeling somewhat
better. The swelling in her foot is going down, the tumor on her forehead looks smaller and the ones on her neck are better,
I believe. She's sleeping through the night and no longer screaming in pain. She still hurts and isn't walking. She's not
back to her normal self again but overall seems to be heading towards better rather tthan worse. I'm still extremely nervous
and scared but have a slightly better feeling than before. We go back to clinic Monday for a platelet and blood transfusion
and hopefully won't be admitted before then. Thank you for all your prayers and please continue to do so. Thank
you for your emails of support, prayers and love~ from all over the U.S. !! It means alot to know everyone out there cares
whether you've met us or not. Continue to email me and let me know you're there :) I love you all!!
November 13, 2003
Hello, I am excited to report that Cierra is improving. Her counts
have dropped so she can't go anywhere and we are waiting, still, bags packed for that infamous fever where we rush to the
ER two hours away in the middle of the night. It hasn't happened yet and usually would have by now~ good news! She wanted
to get dressed yesterday for the first time in a few weeks and she walked yesterday for the first time in a few weeks also.
I looked over and all the sudden she was on her feet walking over to me, of course to yell at me and tell me to get back into
the room and help her paint, but that's my Cierra! Since then, she's been walking more and getting there. Her swelling in
her feet have gone down and the tumor on her forehead is completely gone. Her stomach is slightly smaller and she is still
needing some morphine but not as much as before. I spoke to her Dr. and he said that if her blood results have gone down (
aprotein marker in her blood that is extremely elevated and is a good indicator of neuroblastoma) and if she seems to be feeling
better and recovers from this chemo well; the plan will be to do another round of chemo before rescanning her. I know this
is still a very scary situation but I feel better about this now that I really feel shes responding to this chemo. I have
to stay positive, if not for anyone else, for Cierra. She knows when I'm unhappy and she doesn't need to see that. I have
to take this one day at a time and today is a good day so we are happy! I will try not to look to far ahead and focus on the
good times we are having now. I do not take a day for granted! I am so grateful for all the support that I have from family
and friends as I know they would be there for us at the drop of a hat. I am so grateful for Cierra's friends and cousins because
they are the greatest group of children I know. They treat Cierra so well and love her unconditionally and she is truly lucky
to have them. It's great to know that this is our future... these wonderful, compassionate children are tomorrow's leaders.
I am also grateful for our hospital, which believe it or not, I love. They are wonderful people there and I truly believe
they care about Cierra and the kids there. I love you, Chrissie O., our nurse, thank you for being more than our nurse but my
friend also. How could I forget Cierra's favorite person, jennifer, from art therapy, afterall, Cierra wants to be an artist
when she grows up. Dr. Grupp, even though you're often the bearer of bad news, you also deliver us the good news and it's
always the same day as the scans~ what special treatment we get~ I am truly gratfeul for your compassion, sincerity and determination
to find a cure for all these kids. I feel that Cierra couldn't have made it this far if it weren't for your research and decisions
in Cierra's treatments, you are family to me! Obviously, I am grateful toady for alot of things because we have reason to
be. Until tomorrow~ hug your kids, love your kids, kiss your kids and be grateful for what you have~ XOXO
November 21, 2003
Hello~ Cierra went to school yesterday which is good news! It's her
first time being there in a long time and she was so happy. She lasted the whole day! She's still having some belly pain
and needing morphine but still not as frequently. Her counts are starting to come up which is quicker than usual and she never
did get that fever...yet! Once the counts start to come up though, it usually doesn't happen. We have to go to CHOP (actually
the king of prussia clinic) today for platelt and blood transfusions. Her platelets have been doing very poor. We've had to
go every other day this week for platelets which makes 3 transfusions in 5 days. She also needed blood Monday and Friday this
week. I guess this chemo hit her hard in that manner. The stem cells seem to have made somewhat of a difference in her immune
systems ability to fight off infection but doesn't seem to have helped her blood and platelets at all. She's just not producing
these things on her own. I'm not sure what the next step is about that, if any, other than continuing frequent transfusions.
She hits 0 within 2 days of a transfusion which could potentially be a very serious situation. Of course, Cierra doesn't follow
the rules. She's had no bleeding or ploblems from the platelet count being so low. She's back in good spirits, excited about
school, and laughing and smiling once again. We're still working on that Disney World trip and the West York Inn is having
a benefit to raise money on December 14th. I'll post more info as I get it. At this point, I know there will be a band, Partial
Post, playing there but don't have much more info. I would like to thank them and the west york inn and all who have contributed
to this and helped put this together!! It means so much to us!!! I couldn't thank you enough! Have a Happy Thanksgiving
~ and remember to be thankful ~ what you have today might be gone tomorrow~ XOXO
Happy 14th Birthday Brittany Hall!!
I just wanted to let you know that I am here for you for ANYTHING and
I love you like my own ~ you are such a wonderful and amazingly unselfish young lady and I'm sure you'll grow into a beautiful
woman!
WE LOVE YOU!
|
| Brittany Hall~ H.S. graduation~2008 |
December 2, 2003
Hi, hope everyone had a good thanksgiving.We had fun.
We had dinner at my mom's house then we played games together and we went to see the Dr. Seuss movie later that night. Cierra
really liked the movie and had a good day. We are still going for blood and platelet transfusions 3 times a week which is
really getting on Cierra's nerves. She cries to go home the whole time we're there. We even tried taking friends with us to
play while we're there but she wouldn't play. She just sits there, miserably. I wish she didn't feel that way because I don't
want her to get so sick of this and give up. I try to make it as fun as I can when we go but it's not working anymore. She's
also been having some reactions to the platelets.. she got pretty bad hives the one day and they gave her some steroids which
cleared that up but more often, she gets sick to her stomach, she says she can taste them and gags, and eventually vomits
so she hates getting platelets even worse now! The 2 hour drive both ways is starting to take a toll on me, not too mention
the gas money!! We need a vacation :) We are still waiting for the counts to come up to start chemo again
which will hopefully be pretty soon. The Dr did the blood test (LDH level), which is the neuroblastoma indicator I mentioned
before, and the level is actually below normal which is an excellent sign that she is responding to the chemo considering
it was extremely high before chemo. She's feeling pretty good... still having belly pain but nothing too severe. She only
made it to school 2 days in Novemeber which has her pretty bummed and pretty far behind in her work but we are hoping to attend
more days in December. She really only can go Tuesdays and Thursdays because of the trips to Philly but hopefully, we can
at least get those two days in each week. On a better note~ Cierra had a wonderful weekend! Her Brownie troop leader's husband
set up a trip in a private airplane for her and we got to do that this weekend! It was so fun. I was terrified and I told
the pilot's wife to kiss him goodbye before we got on because of my awful luck but we survived. It was really fun once we
got up in the air. It was a little plane with only 4 seats. Cierra sat up front in the copilot seat with the pilot and Brittany
and I sat in the back. I couldn't believe how brave she was! We were only 1500 to 2500 feet high so we could see down real
good. We flew over our house and a couple other neat places for about an hour and then we went back. Cierra said she wants
to go again and they said anytime! Thank you so much for that awesome experience!! We also got our christmas tree tonight
and Cierra can't wait to decorate it tomorrow night. She picked out the best christmas tree ever. She made the guy hold up
a bunch of trees and shake the branches down and spin them around to check for holes before finally saying ,"that one" about
a tree someone else was looking at, but of course Cierra got her way as always ;) The tree was $50. but we didn't have to
pay for it because the generous, Mr. Gerrit Strathmyer, donates his trees FREE to all the make a wish families
every year! It means alot to us and is a big help! Thank you for reading our posts and as always, keep Cierra in your
prayers, please. XOXO
DECEMBER 10, 2003
Hi everyone! We went in for chemo (Carboplatin and
VP16) again Monday and Tuesday and everything went good. We stayed at the Ronald McDonald House and got to visit our friend,
Alex Scott, who has been battling neuroblastoma for 7 years and continues to do so! We went to their house to see her new
persian kitten, Herbert, that she received on The John Walsh Show recently. Cierra fell in love and now wants a persian kitten.
I am working on that for christmas. Little did I know when I agreed to this that those kind are $300 plus!! She has not been
doing too good the past week or so. The tumor on her forehead has returned and her stomach is back to being huge with extreme
pain. She's on large amounts of morphine again. If only we could get the chemo one week sooner, she'd be in much better shape.
My goal for next month :) Hopefully she will respond to the chemo and start to feel better soon. For now, she sleeps or cries
most of the day away. On a good note, her brownie leaders' husband, Randy Drais, who set up the airplane ride also set up
a private art lesson for Cierra in our home for a christmas present from their family . Susan, who I call Miss Artist (she'll understand
that joke) came over tonight and Cierra really enjoyed it. She did paint and learn some cool new techniques before finally
falling asleep. She will be back next week to help with a project we are creating on Cierra's bedroom wall! Thank you
so much for that! As we all know, Cierra wants to be an artist when she grows up but Susan informed Cierra that she already
IS an artist and Cierra agreed, how cute :) We did travel to Philadelphia in the snow storm on Friday for platelets, thankfully
my mom drove us because I am terrified of the snow and my little corolla doesn't cut it too well in those conditions. I'm
very nervous for winter because of the weather and the need to get to Philly so often, especially in an emergency situation.
Lets all pray that we don't have a snowy winter this year~ please. Yesterday, Cierra got to be on the front page of the newspaper
and she was very proud. They talked about the fundraiser for Disney World at the West York Inn, which is this Sunday , the
14th. It is a 7 hour event, including a silent auction, a D.J., an acoustic duo and a live band, Partial Post! Thank you sooo
much~ I can't express it enough!!! Cierra is not too happy that she will not be able to attend the event due to it being in
a bar and the smoke that will likely be around but we plan to meet Monday following the event. US Airways is sponsoring a
fantasy flight to the north pole that same Sunday so Cierra is very excited for that which makes up for her missing the fundraiser.
We will be leaving from the Phila airport Sunday and "flying" to the north pole to meet with santa, have games, face painting,
prizes, and a party! She can't wait. What a great idea. It's for the cancer kids at CHOP! Saturday we are going to the Crayola
factory, which we've never been too. I hope she's feeling better by then, at least enough to enjoy this fun weekend we have
planned. We go back to CHOP Friday for platelets and then are starting a new immune stimulator, if my insurance will approve
the hefty cost ($2,500. a dose,) which I will inject in her arm once a month and then another new drug IL11, which will potentially
help with her platelets(assuming that her bone marrow is capable of producing platelets) and that will be a daily injection
I will give, once again, if insurance allows this. If this works, hopefully, we can go back to our twice a week scheduled
trips to Philly and it will make a trip to Disney World sound closer yet! Until next time, take care and as always~ continue
to pray for my baby's cure and, most importantly, comfort.
XOXO
DECEMBER 18, 2003
Happy Holidays! Cierra is doing better than last time
I posted. The chemo has kicked in and really seems to be helping. She still requires morphine regularly though. We made it
to our fun weekend, which she was able to enjoy. The "North Pole" was amazing! The time and effort put into that by US Airways
was outstanding! We had an excellent time. Although, Cierra realized we weren't really at the north pole but just at another
part of the airport. She kept saying that she thinks they're tricking her. Finally I just told her that they brought
the north pole to us and she was satisfied with that. She really would have realized the truth when we walked
to our car after the party rather than flying back :) You can't get anything past her, huh! So after the party, we drove to
New Jersey to see a kitten that she fell in love with on the internet. We ended up coming home with this kitten, with nothing
for it, but it is the cutest thing ever! It's a 6 week old little girl and it looks alot like Alex's kitten. Cierra said she
wanted to name her Herbert like Alex did but I said it's a girl so she named her Chloe Sparkle Lugo. We are
still going to Philly 3 times a week and the new medications have been approved by the insurance. We started them Friday.
We have seen no improvements yet but the Dr. said it will take a while. These injections are much more painful to Cierra but
she continues to sit still for it. The benefit at The West York Inn was excellent. I never expected to be able to go to disney
world without any extra money needed but thats what happened!!!! We are def going. We need to wait and see if these new meds
work at all so we won't have to spend every other day at the hospital in Florida getting transfusions. Although, if thats
what we need to do, we will. Thank you all for putting together this event and making this possibly for us!!!
I'm so excited for christmas! We're coming up on one
year of when Cierra relapsed (December 30) and I remember we rescheduled the scans til after christmas last year so we could
just enjoy the holiday. I'm very glad we did. I can't even begin to express how happy I am that I am able to hold Cierra this
christmas, in my arms. I can't help but think about the friends we've made over these years that aren't able to do that this
holiday. I hope this season brings you peace and comfort in knowing that your children are free of pain and enjoying their
first christmas in Heaven together and ... CANCER~FREE! Merry Christmas to all of our little friend that have earned their
Angel Wings over this past year ~ Naadira, Anthony, Tristan, Justin, Madison, Cassidy, Lance, Dalton, Austin, Toiresa and
Jessi!
Please continue to pray for Cierra ad for these families
above that they find comfort this holiday.
Merry Christmas!
JANUARY 1, 2004
Happy New Year! I can't believe another year has gone
by. Cierra and I had a good new year's eve. We spent the night at my friend, Beth's house, with Cierra's cousins and friends
and stayed up til 1:30am making all kinds of noise, playing games and drinking sparkling grape juice. She loved it! She's
been doing ok lately. She still gets morphine pretty regularly but is still doing things and walking. It seems that this chemo
is preventing the cancer from really progressing but that's about all it's doing. I'm still looking into a treatmet option
in Iowa that I found on the internet and I am interested in. Dr. Grupp is looking into it as well and he'll get back to me
about it. I was hoping to do chemo next week but so far that doesn't look too promising. We'll see. We're stil going to Philly
3 times a week and our schedule has not really changed much. I can't believe how long it' s been since we've been admitted
into the hospital (knock on wood.) She's doing excellent in that aspect. On a more sad note~ our sweet little kitten is now
in kitten heaven as of 12/29/03. I will spare you the gory details but we ordered a pizza that night and the pizza man tripped
over my rug at the front door and stepped on her head. I've never seen anything like it. We rushed her to the animal emergency
clinic but she didn't make it as a result of head trauma. I just can't shake this black cloud that looms over my head, can
I? I need to do some karma changing, I think, huh! So Cierra is upset but I didn't tell her exactly what happened because
I didn't want to upset her too much but she is glad that her kitten is in good hands in Heaven with her angel friends watching
over Chloe. Cierra wants another kitten and she wants to name it Chloe the 2nd. So tomorrow we are off to Virginia to get
the kitten she originally wanted but I talked her out of because of the 4 hour drive both ways! Guess what, It's still available
and how can I say no now! We've decided to go friday and stay over night at a hotel. We're bringing her friend along and will
meet the woman Saturday, who is from North Carolina but meeting us halfway. So hopefully we can make it a fun experience.
We like staying in hotels anyway so it should all work out. I guess it was fate for this kitten to be ours after all. Needless
to say, I will pick up the little guy before anyone enters our home from now on. Thank you all for keeping posted on our updates
and please continue to pray for Cierra!!
XOXO
~~I'M STILL WORKING ON THIS. THERE ARE MANY MORE ENTRIES BETWEEN
THIS ONE AND HER PASSING. PLEASE BEAR WITH ME. SORRY, IT GETS HARD TO TYPE THIS AS IT BRINGS BACK SO MANY MEMORIES. :(
XOXO~~~~~
March 17, 2004
It is with unimaginable devastation that
I must leave this post to you all! Cierra Angelica Lugo passed away in my arms in our home at 7:51am Wednesday March 17, 2004.
She went peacefully, as if she just fell asleep. I held her and told her how much I love her and I don't want her to go but
I know it's time and she can let go.. it'll be o.k. and we'll see each other again in Heaven... and I reminded her of the
books we read about Heaven and how she will be free of pain and ouchies. I told her, "I love you so much I can't even say.
I love you more and more each day. I love you infinity" (which we say every night to each other) and then told her it's o.k.
and she stopped breathing. I held her in my arms for four hours before I carried her out to the funeral director's car. It
was snowing slight snow flurries and the sun was shining~ it was beautiful. We meet with the funeral director tomorrow and
will find out when the viewing will be. It is open to the public and I am planning a balloon release. I will post the info
as soon as I can. Thank you all for your continued support through this journey we call life. I'm not sure what's next and
I can't even imagine next without my Cierra but I am trying to take it one breath at a time for now.
With Love,
Shannen
Being There
Do you know of someone
Whose precious child has died?
Perhaps she is s a neighbor or friend
With whom you can confide.
You assume that she is suffering
A tragedy so deep,
That there is nothing you can do
Since all she does is weep.
You feel that if you see her
There is nothing you can say
That would make her precious child come
back
Or make the pain go away.
And if by chance you meet her
And have to face her grief,
You'll do your very best
To make this meeting brief.
You'll talk about the weather
Or the lady down the lane,
But you'll never mention her child~
That would cause her too much pain!
And when the funeral's over,
And all is said and done,
You'll go home to your family,
And she'll be all alone.
She'll go on, She'll be alright, time
heals~
Or so it seems,
While she's left alone to pick up the
pieces
Of her shattered life and dreams.
~OR~
You can open up your heart
And find that special place
Where compassion and true giving
Are awaiting your embrace.
"Today I'm thinking of you in a very special
way"
Or how about "I love you!"
Are some loving things to say.
Sometimes a very simple task
Like picking up the phone,
Can help her feel not-so-quite
Desperately alone.
Whatever comes from a genuine heart
Cannot be said in vain
For the truth is, it's these very things
That lessen her great pain.
And when you let her talk about
Her child who is dead,
You'll know this is far greater
Than anything you've said.
So will you reach out with all your soul
And let her know you care?
For in the end there's no substitute
For simply BEING THERE!
*This poem is dedicated to everyone whose
holding me up right now (especially my Mom, Dad,Kathy, Seth, Beth and Diana.) I really, really couldn't survive without you.
I LOVE YOU!!
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