I am so sorry for not posting sooner. I have been busy the past 24 hours.
We took Charli down for her 2:00 MRI. At 4:30 they finally took her in. This meant that she went without food from 7:45-6:30...nearly 12 hours without eating - that is better than most of us. She was a trooper, stayed calm all afternoon while we were waiting. Charli wanted to cuddle and be held before they took her in and just did great.
We spoke with one Dr. yesterday who ordered a CT scan for Charli to assess the overall success of treatment so far. This scan can't be done until Tuesday morning...so now we wait. I would think that we should know more later Tuesday, but I really don't know if we will be that lucky.
It appears that the MRI showed good things so far. The overall size of the tumor is much smaller, and her internal organs have fallen back into their "normal" God-given place. However, there does seem to be a mass involving her spine yet. Without the exact report from the radiologist I don't really know what that means.
At this point her chemo has been put off at least one week. There is the possibility that we will be back in next week to move forward with the next four treatments. This also means, that as things stand now, Charli will NOT be in the hospital for her 1 year birthday - PRAISE THE LORD!
So, we really have no answers - and not much to share with you...I wish I had some news. However, I am praying hard and putting my faith in God - that by waiting we will receive something more positive than if we would just go on what we know now. Either way I know that Charli will be treated the way God knows is best...sometimes it would just be easier if I knew what that was before it actually happened!
Thank you to all of you who sent notes asking about Charli! I received over 80 messages yesterday...so overwhelming and so touching. You are all such amazing people, thank you for caring about our family.
- The Preister's
- What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...
Saturday, June 16, 2007
Thursday, June 14, 2007
weekend plans
Hi everyone! Thank you for all your calls and messages today. We have the "GO AHEAD" for this weekend. I will have some answers tomorrow night...and will post something as soon as I can. Keep your fingers crossed and your prayers said loud!
Below is a post of a friend who's child was diagnosed with NB at the same time as Charli...she is only a few months older. I think it is written just perfectly, and says all that I have been trying to say over the past few weeks. Please take a few minutes to read and take it in. You can visit their site, the link is listed to the right under "Keira".
It has been a while. As I typed in the date, I realized the previous post was almost two weeks ago. I apologize. This last week was crazy.
It feels a little like we are starting over. Her last round of chemo happened 2 weeks ago. Her first scan is not until next week. Three whole weeks of doing nothing but waiting!
During the 4 rounds of chemo, we felt like we were doing something to help Keira. Now we feel like we are just waiting . . . waiting for these tests, waiting for results, waiting and not doing anything. And while we trust God, we are also scared. The tests will show 1 of 3 things: she has gotten better; nothing has changed; or she has gotten worse. The last option is very unlikely, and the doctors believe she will show improvement. But we are her parents and we are still scared. I think during the rounds of chemo we did not have to think much about what was really happening. Everything became routine and simpler. Now we have to break out of all that and finally discover if our little girl is really getting better. That is scary.
Her first test will be next Wed at 2:30 pm. Please pray for her. She is unable to eat anything for 6 hours before the test, which in the past has been more like 8 hours because the test always gets started late. It is not easy to "explain" to a 1 year-old why she can't eat. Her response is typically just a loud scream and then another loud scream and this continues until she is fed. So please pray for her and for her parents. And of course, please continue to pray for her as we finally learn the results of the past 2 months of chemo.
We will then meet with her doctors on Friday to discuss the results of the test. The ideal result is a miracle where all the cancer is gone and we fall to our knees praising God. The results doctors are expecting is that the tumor would have shrunken allowing either surgery followed by more chemo or another 4 rounds of chemo.
Also, her counts are low right now. She got her finger pricked to draw blood yesterday and we had a hard time getting the bleeding to stop because her blood is so thin right now. She is in danger of infection and showing signs of being extra tired. She needs your prayers. (I am so tired of all this.)
We are believers in Jesus Christ. Our faith teaches us that this universe, all the bad and the good, are still under the control of God. We believe that God loves us and loves our daughter. And we trust God. We pray that He heals Keira. But we are also parents of a sick little girl. Our home is tense right now despite our trust. We are anxious even as we believe. We are nervous even as we are hopeful. And in this silence, in the waiting, in the day to day moments where we have no answers, all we can do is lean on friends and family and most importantly on our Father in heaven. And from Him and from all those who stand with us we draw strength to see this through.
Jason, Erin and Keira Grace
Below is a post of a friend who's child was diagnosed with NB at the same time as Charli...she is only a few months older. I think it is written just perfectly, and says all that I have been trying to say over the past few weeks. Please take a few minutes to read and take it in. You can visit their site, the link is listed to the right under "Keira".
It has been a while. As I typed in the date, I realized the previous post was almost two weeks ago. I apologize. This last week was crazy.
It feels a little like we are starting over. Her last round of chemo happened 2 weeks ago. Her first scan is not until next week. Three whole weeks of doing nothing but waiting!
During the 4 rounds of chemo, we felt like we were doing something to help Keira. Now we feel like we are just waiting . . . waiting for these tests, waiting for results, waiting and not doing anything. And while we trust God, we are also scared. The tests will show 1 of 3 things: she has gotten better; nothing has changed; or she has gotten worse. The last option is very unlikely, and the doctors believe she will show improvement. But we are her parents and we are still scared. I think during the rounds of chemo we did not have to think much about what was really happening. Everything became routine and simpler. Now we have to break out of all that and finally discover if our little girl is really getting better. That is scary.
Her first test will be next Wed at 2:30 pm. Please pray for her. She is unable to eat anything for 6 hours before the test, which in the past has been more like 8 hours because the test always gets started late. It is not easy to "explain" to a 1 year-old why she can't eat. Her response is typically just a loud scream and then another loud scream and this continues until she is fed. So please pray for her and for her parents. And of course, please continue to pray for her as we finally learn the results of the past 2 months of chemo.
We will then meet with her doctors on Friday to discuss the results of the test. The ideal result is a miracle where all the cancer is gone and we fall to our knees praising God. The results doctors are expecting is that the tumor would have shrunken allowing either surgery followed by more chemo or another 4 rounds of chemo.
Also, her counts are low right now. She got her finger pricked to draw blood yesterday and we had a hard time getting the bleeding to stop because her blood is so thin right now. She is in danger of infection and showing signs of being extra tired. She needs your prayers. (I am so tired of all this.)
We are believers in Jesus Christ. Our faith teaches us that this universe, all the bad and the good, are still under the control of God. We believe that God loves us and loves our daughter. And we trust God. We pray that He heals Keira. But we are also parents of a sick little girl. Our home is tense right now despite our trust. We are anxious even as we believe. We are nervous even as we are hopeful. And in this silence, in the waiting, in the day to day moments where we have no answers, all we can do is lean on friends and family and most importantly on our Father in heaven. And from Him and from all those who stand with us we draw strength to see this through.
Jason, Erin and Keira Grace
The Special Mother
*someone forwarded me this email today, it really meant a lot to me and I wanted to share*
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll
handle it."
"I watched her today. She has that feeling of self and independence that
is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter,
I can fix that. This one is perfect - she has just enough selfishness." The
angel gasps - "selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a “spoken word”. She will never consider a
”step" ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she
is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll
handle it."
"I watched her today. She has that feeling of self and independence that
is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter,
I can fix that. This one is perfect - she has just enough selfishness." The
angel gasps - "selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a “spoken word”. She will never consider a
”step" ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she
is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Wednesday, June 13, 2007
Happy Father's Day! (early)
I have created the following video for Chad for Father's Day! I know it is early, but with everything we have going on this weekend I didn't want to forget about it! Chad really enjoyed the video, we hope you do too.
I will talk to Charli's doctor tomorrow and know more about this weekend, if they still feel comfortable moving forward. I pray that everything will go as planned, but we will do what is safe for Charli....I will keep you posted!
Thanks for checking in on us :-)
Happy Father's Day
PS - if you let it play through the first time, the second time you should be able to view it without any problems (if you have a slow connection!)
I will talk to Charli's doctor tomorrow and know more about this weekend, if they still feel comfortable moving forward. I pray that everything will go as planned, but we will do what is safe for Charli....I will keep you posted!
Thanks for checking in on us :-)
Happy Father's Day
PS - if you let it play through the first time, the second time you should be able to view it without any problems (if you have a slow connection!)
Monday, June 11, 2007
jibber-jabber
While on a walk with Charli this morning, as she 'woof-woofed' at a dog that walked by, I realized that I haven't posted about all the cute words she can say!
Charli started to say "da-da" early last month but just recently has added a few new 'regulars' to her vocabulary! "ma-ma" is pretty common for her now (she used to say na-na when she wanted me!), and she throws a "da-da" in there every now and again! She also will say "ppa-pa" when she sees a puppy, and make a "oof, oof" sound too...trying to bark! One of the cutest sounds she makes is when she gets on her John Deere tractor and says "voommm-voommm"!
She really is growing up so fast, it is hard to believe that 10 1/2 short months ago she just came into this world...look how far she has come.
Charli started to say "da-da" early last month but just recently has added a few new 'regulars' to her vocabulary! "ma-ma" is pretty common for her now (she used to say na-na when she wanted me!), and she throws a "da-da" in there every now and again! She also will say "ppa-pa" when she sees a puppy, and make a "oof, oof" sound too...trying to bark! One of the cutest sounds she makes is when she gets on her John Deere tractor and says "voommm-voommm"!
She really is growing up so fast, it is hard to believe that 10 1/2 short months ago she just came into this world...look how far she has come.
GUILTY
Well...I feel guilty this morning.
I think Charli is starting to get sick - and I feel terrible. The past few weeks Charli has been feeling and acting so well, we have been a bit more "brave" with her than we have been in the past. Up until about a month ago we were okay with keeping her home, limiting visitors, and limiting where we would go so we wouldn't bring anything home. BUT - a few weeks ago we went out for the first time (taking Charli on a 'trip') and it got us excited! So, we have started to take her a few more places to visit, letting a few more people come into the house, etc...and now she is sick. UGH.
I know that sickness comes with children - that I get. However, most children aren't going through chemo and have a weakened immune system. I am not sure how long she will hold onto her stuffy nose, cough, and sneezes, that she woke with at 4am...but either way I feel bad.
We have to take her to Omaha this weekend for her MRI. I am afraid that if she gets treatment while sick, she will be knocked off her feet. I know it may seem silly, but please pray that she feels better before our next trip to Omaha, which is Friday...
I think Charli is starting to get sick - and I feel terrible. The past few weeks Charli has been feeling and acting so well, we have been a bit more "brave" with her than we have been in the past. Up until about a month ago we were okay with keeping her home, limiting visitors, and limiting where we would go so we wouldn't bring anything home. BUT - a few weeks ago we went out for the first time (taking Charli on a 'trip') and it got us excited! So, we have started to take her a few more places to visit, letting a few more people come into the house, etc...and now she is sick. UGH.
I know that sickness comes with children - that I get. However, most children aren't going through chemo and have a weakened immune system. I am not sure how long she will hold onto her stuffy nose, cough, and sneezes, that she woke with at 4am...but either way I feel bad.
We have to take her to Omaha this weekend for her MRI. I am afraid that if she gets treatment while sick, she will be knocked off her feet. I know it may seem silly, but please pray that she feels better before our next trip to Omaha, which is Friday...
Sunday, June 10, 2007
night out!
Well...we had our first "date night" since Charli got sick...and we had a nice time! We went to eat at Traditions (a great place to go!) and then to a movie. At Traditions I had my very first Martini...how exiting! I had a 'Lemon Drop'! After dinner we went straight to the movie. We saw 'Knocked Up'. It sounds silly, and it was! We enjoyed the movie we laughed a lot...at the end they had a little baby (about Charli's age) and that made us miss Charli - but other than that we enjoyed it! We came home, and of course, Charli was sleeping - so we didn't get to play with her!
Today we took Charli to an antique tractor show at the park, it was warm but nice to get out. I think later today we will go on a walk to the park and do some fun things!
Less than one week until the MRI, I am so excited and so nervous at the same time! All for now - Charli is napping and I am making cookies! Have a great day everyone :-)
I like to play under everything now!
me and mommy before she went on a date with daddy! 
mom was trying to tease me because I wouldn't stop chewing my thumb long enough for a picture! jokes on her, I still look cute - she just looks silly!
I went to visit Lynn & Lonnie this day! Lonnie was golfing so I didn't get to see him :-(
I like to sit and play in my "brothers" couch...mom & dad think this is funny!Friday, June 08, 2007
WOW!
Do any of you look back on things you have said or done and think "how did I know that THEN!? I am sure that we all do and say things that can be looked back upon like this, but we don't realize it. Today, I was hit with something that brought me to tears.
I was putting Charli's new bracelet in her "jewelery box" and found a silver bracelet I bought for myself the week that Charli was born. (I remember buying it the night I got a pedicure, one week before I had Charli!!) Anyway, it said..."Expect Miracles". I found this, read it, and had to sit down. How did I know a year ago that this phrase would mean so much to me now?
It is something like this that reminds me that God works in mysterious ways. After Charli was born I put the bracelet away, and was going to save it for her - never to look at it again until she was older...or so I thought! Here I sit today - proudly wearing this bracelet again to remind myself to no only believe but EXPECT miracles!
This is something I wanted to share with all of you...so you can EXPECT MIRACLES too.
I was putting Charli's new bracelet in her "jewelery box" and found a silver bracelet I bought for myself the week that Charli was born. (I remember buying it the night I got a pedicure, one week before I had Charli!!) Anyway, it said..."Expect Miracles". I found this, read it, and had to sit down. How did I know a year ago that this phrase would mean so much to me now?
It is something like this that reminds me that God works in mysterious ways. After Charli was born I put the bracelet away, and was going to save it for her - never to look at it again until she was older...or so I thought! Here I sit today - proudly wearing this bracelet again to remind myself to no only believe but EXPECT miracles!
This is something I wanted to share with all of you...so you can EXPECT MIRACLES too.
i forgot!!
I forgot to post these pictures...and I apologize for that. Shortly after Charli's benefit we received the most precious handmade blanket from a group of moms I met while I was pregnant with Charli. We call ourselves the July06 moms!! All of these people have children the same age as Charli. Although not every mom was able to contribute to this quilt, the ones that did - made this on behalf of all of them! I want to take a quick second to give a HUGE 'shout out' to them. These are the moms who have given me so much support, love, and understanding both before and after Charli's diagnosis. While we were struggling with what to do with Charli, before we KNEW it was cancer...they pushed me to follow our gut and continue on until we found answers. Without these ladies...I would be LOST! I have found several wonderfully close friends, that continue to amaze me daily! I pray that everyone can meet someone as great as these women, I have been blessed
kindness of others
I just wanted to thank all of you for your kindness. I am talking about the kindness of emails, letters, cards, phone calls, notes left on our door, visits, surprise ice cream drop offs, etc!
We received two gifts this week that especially touched my heart. Chad's aunt Janice stopped by Thursday night and gave us two very thoughtful gifts. The first is an inspirational childnren's bracelet for Charli. It is so pretty - silver and pink, with special charms. This will be her "special" bracelet, and I intend to have her wear it when we go down for chemo. The second gift is equally as special! It is an "awareness" bracelet. The card that came with it says: "Having a child with Neuroblastoma makes us keenly aware of how fragile and precious their lives are. Many families look for a special peice of keepsake jewlery that will honor them." It is beautiful
The second gift came from 'Charli'! We received a card that said:
TO: Mommy & Daddy
(picture of Charli on the inside cover!)
Hey, Mommy & Daddy,
Grandpa & Grandma Preister want a play date with me, this Saturday, June 9th.
Grandpa gave me this money to give to you so you can have dinner & see a movie.
I really want to play with Grandpa & Grandma so I hope you will take them up on the offer & take sometime to go out.
This is my belated Mother's Day and early Father's Day gift to you.
Love, Charli Ann
Oh...and Charli got an amazingly cute pink John Deere dress, shorts, and hat from a friend in Omaha - pictures of that were in her video!
These are just a few examples of how kind and great people have been to us. THEN - there are people like Linda who bring us ice cream afer supper!!
Thank you to all of you who know how to sweeten our day and brighten our lives!
We received two gifts this week that especially touched my heart. Chad's aunt Janice stopped by Thursday night and gave us two very thoughtful gifts. The first is an inspirational childnren's bracelet for Charli. It is so pretty - silver and pink, with special charms. This will be her "special" bracelet, and I intend to have her wear it when we go down for chemo. The second gift is equally as special! It is an "awareness" bracelet. The card that came with it says: "Having a child with Neuroblastoma makes us keenly aware of how fragile and precious their lives are. Many families look for a special peice of keepsake jewlery that will honor them." It is beautiful
The second gift came from 'Charli'! We received a card that said:
TO: Mommy & Daddy
(picture of Charli on the inside cover!)
Hey, Mommy & Daddy,
Grandpa & Grandma Preister want a play date with me, this Saturday, June 9th.
Grandpa gave me this money to give to you so you can have dinner & see a movie.
I really want to play with Grandpa & Grandma so I hope you will take them up on the offer & take sometime to go out.
This is my belated Mother's Day and early Father's Day gift to you.
Love, Charli Ann
Oh...and Charli got an amazingly cute pink John Deere dress, shorts, and hat from a friend in Omaha - pictures of that were in her video!
These are just a few examples of how kind and great people have been to us. THEN - there are people like Linda who bring us ice cream afer supper!!
Thank you to all of you who know how to sweeten our day and brighten our lives!
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