Gracie woke up and had some cinnamon roll, then some corn dog and fries, and a few bites of pudding. more than the last 3 weeks combined! The doctors are happy with her progress and weight gain and blood counts. We are hoping to bring her home in a couple of days before chemo next week. It will be nice to have Easter at home. :)
Monday, March 29, 2010
There's that smile we've been missing!
We took gracie for a ride in the wagon down to the cafeteria again. she chose a corn dog and fries. then we went outside to have a little picnic. She was laughing at daddy climbing up the playground and I caught a picture. We havent seen her smile in weeks. It made me sooo happy to see it.
Sunday, March 28, 2010
Looking better
March 25th 2010-3 weeks in the hospital
March 28-2010
Thank you to everyone who has fasted and prayed for Gracie. We feel the Lord blessing us and little Gracie. She has been on the iv nutrition all week and is back up to 32 lbs! She looks a lot better and is starting to feel a bit better too. She hasnt puked in 3 days so that is good. She wanted to eat last night but didnt know what she wanted. she tried a little bite of chocolate and said it was gross. then tried a bite of cracker and spit it out. then she had a few bites of bean burrito and seemed to like it. She woke me up at 11:30 and said she wanted a corn dog and fries so I got her some from the cafeteria and she had a few bites of that too. :) Good thing the cafeteria is open til 2 am!
Her mouth sores seem to be all gone now and she is back to sucking her thumb. :) I never thought I would be happy to see her suck her thumb because before this all happened we really tried to discourage her from doing it. Today she was rubbing her head and said "I'm mad". I said "why are you mad?" and she said "because my hair is gone" I told her I understand she is mad and that it will grow back in a while. She isnt interested in wearing any hats or anything so far.
Her blood counts are all up to normal now because of the shots she has at nights for the white cells and she had her 4th transfusion of packed red blood cells, they also gave her some platelets this week. We would love to take her home before the next round of chemo but she needs to eat bette than a few bites. :) we are definitely making progress though!
Tuesday, March 23, 2010
Haircut and hair loss
Gracie had a ton of hair on her pillow today and her hair was pretty messy from laying around. I got a brush and started brushing it very softly and got a big pile of hair. Then when it was all combed through, i gave her a haircut. She sat still and did a good job. It keeps falling out pretty steadily and it wont be long before it is all out. She knows it is happening and doesnt seem to care too much for the time being.
Gracie had her 3rd blood transfusion yesterday and platelets today. She is pretty miserable still and nauseated. She hasnt smiled in a week. she also has developed mouth sores that cover her mouth, lips and tongue. I dont understand why she has to go through all of these things. why cant the nausea leave already? why does she have to have the sores? why cant she have an appetite? I feel like she has to go through so much that isnt necessary and the Lord is trying my faith. We have not lost our faith though. It is what keeps us going. We know the Lord is mindful of us and knows our needs even if we cant understand why this has to happen. It doesnt make any sense. but neither do a lot of things in life...Gracie is strong and a fighter. She will beat this. We feel so blessed to have her in our family and to be her parents, she is an angel.
Saturday, March 20, 2010
Rough week
Gracie hasn't stopped vomitting since starting chemo. She has tried 5 or 6 different anti-nausea medications without luck. She is losing weight and is down to 27.5 lbs because she is getting dehydrated. they started her on TPN which is nutrition through the IV, on Thursday. Today the doctor said he was going to start her on DDAVP for diabetes insipidus. this is not anything related to diabetes, so dont get confused. google it :) or go to http://www.diabetesinsipidus.org/ it just means she drinks and pees a lot so with her vomitting everything she drinks, she is getting dehydrated cause she is still peeing a ton. I am not very good at explaining it even though i have diabetes insipidus also from my car wreck 14 years ago. I have been on the DDAVP 14 years. anyway, he is going to try a couple new nausea meds and hopefully they will be successful and she can start gaining her weight back and getting an appetite. We continue to have faith anfd hope that things will turn around for her soon. thank you so much for your prayers. We have wonderful friends and family. We are amazed at the love and support we have also recieved from total strangers who've heard Gracie's story. The world truly has good people. There is so much focus on the evil of the world, but I know the world truly holds more good than bad. :) Much love, Lisa
Monday, March 15, 2010
Chemotheraphy
resting after the first day of chemo
the second day wasnt so easy...
Gracie started chemo Saturday. She did pretty well with it the first night but last night was pretty rough for her. She was vomitting quite a bit. She had been sick today as well. tonight is her last dose for this first round. We are hoping she will get her appetite back so she can come home in a couple days. She will have 3-4 weeks at home to get her counts back up to go through chemo again. They are anticipating about 4 rounds before resecting the tumor. Please pray for her to eat so she can come home. thanks for all of the love and support.
Saturday, March 13, 2010
Friends of Gracie-Photography Event
Thank you so much to Jessica Potter for doing this fund raising event for Gracie on April 17th in southeastern Idaho. Jessica takes awesome photos and you will be very pleased with them while helping Gracie at the same time!
Contact Jessica at 801-927-7715 to schedule your time slot.
Contact Jessica at 801-927-7715 to schedule your time slot.
Neuroblastoma
Here is a MRI picture of Gracie's Neuroblastoma. We are starting chemotherapy today to try and shrink the tumor down so that the surgeons can try to take out the tumor. Gracie will be receiving 5 different chemotherapy medications to try to do this. We will have several months of chemotherapy before the surgeons can operate. We hope and pray that the chemotherapy destroys the cells that are outside the actual tumor in the lymphatic system. Please do not copy or distribute this MRI beyond this blog. We just wanted people to be able to see and understand the disease a little better. Thank you for all of your prayers and support. --Brandon
The $10 Challenge
In the few days since I started the donation fund Gracie has received over $400 in donations! THANK YOU !!! It is wondeful to see that so many people want to help! Yesterday this blog recieved 483 visitors. That is Incredible!! We know so many of you are praying for Gracie and her family and we are so grateful for the support. I would like to issue a $10 challenge to everyone who visits this site today. Just think if each person who visits donates just $10 that would be over $4,000 for her family. $10 isn't much individually but collectively it's HUGE! Paypal is a safe and secure way to donate. It's a $10 day! Go!
Friday, March 12, 2010
disappointing news
today we recieved some disappointing news about the recent testing Gracie has undergone for cancer staging. Gracie has been diagnosed with stage III high risk neuroblastoma. She will be starting aggressive chemotherapy tomorrow, and by God's grace she will overcome the odds that have been stacked against her. Please continue to include her in your prayers, it helps so much.
Thursday, March 11, 2010
These past few months
this is Gracie's mom, Lisa, writing. I will specify when it is me, otherwise, it will be my sister, Keri writing.
A lot of people have wanted to know how we found the cancer in the first place so I thought I'd give a quick story.
It all started about 6 months ago with her complaining that her tummy hurt. well, with a 3 year old, it is hard to know if it is stomach ache, or pain. She also didnt eat much. I thought maybe she might even just be hungry and would encourage her to eat. She would complain a bit every day for about a week then be back to normal. I thought maybe it was something she ate.
the next month she started complaining again and I took her up to the ER where my husband works and had them do a urinalysis which was fine. again, she improved and the symptoms went away. after a couple more months, she started complaining again and I thought maybe it was a urinary tract infection so I took her up to the ER again for another urinalysis which again showed nothing. I went back and forth wondering how much she really hurt, or if it was all a matter of being a dramatic 3 year old. the last month or more she has complained daily. I scheduled an appointment with her pediatrician and they did a water deprivation test and a series of blood work. They were thinking maybe diabetes or diabetes insipidus since she has also been drinking and peeing a TON! she would go through 4 pullups a night and drink all day and all night. if she wasnt up in the night for a drink, she was up because of pain. The tests the pediatrician did, all came back normal. I still knew something was wrong. we started thinking maybe she was lactose intolerant or gluten intolerant. I went shopping for all the special food I would need and talked with friends that had the allergies in their familes. I hoped this was the answer. I was at the end of my rope.
On Wednesday March 3rd she was in a lot more pain than usual and would not eat. I gave her tylenol and it seemed to only help a little and she layed in bed all day. when my husband Brandon got home that night she was fine. she was running around being silly. I thought maybe it had been gas. that night she woke up screaming in pain a few times. It seemed to be a lot worse. I gave her more tylenol and some benadryl to help her sleep. the next day March 4th started out ok but quickly progressed to screaming. The tylenol did absoutely nothing to help her and I knew in my heart she had something really wrong with her. I called my husband at work and let him listen to her screams. He told me they were slammed in the ER but to bring her up.This was around 2 in the afternoon. They got her in for an ultrasound around 4:00. The technician had a strange look on her face but didnt say anything. Brandon was in the room and thought the left kidney looked strange. He went back to work and said to call when the radiologist came. The radiologist came while he was still gone and did the ultrasound over again, i heard him whispering to the technician and felling Gracies tummy. He told me there was some sort of mass that would need further testing. then he asked "are you ok?" I said "yes, i am just tired" I was clueless at that point why he was really asking me that question. I never though cancer. I guess i was in denial. I thought a mass could maybe mean a cyst or an ulcer. I was pretty clueless. He told me he would go talk to my husnband and for me to wait in the waiting room. I waited for about 15 minutes when Brandon came out crying. I looked at him and said "WHAT?!!!" He said "she has a tumor, Lisa" We both cried. I was still in quite a bit of denial and shock. They said to take her to St. Francis Childrens hospital here in Tulsa to be admitted for further testing. The next morning they got her in for a CT and found the tumor. later that day they did surgery for a biopsy of the tumor and to put in a chemotherapy port. The biopsy showed it was a neuroblastoma. It got so real after that. I bawled for the next 2 days. Since then , we have felt so much love and comfort and support. We appreciate all of you for your love for us and for Gracie. We know our Heavenly Father hears and answers prayers. Please continue to pray for all of us to have strength through this time. She starts her first round of chemotherapy tomorrow. Im not sure how often I will post but I am thankful to Keri for helping me with this. Thanks for everything and for the donations. We cant begin to tell you how much it means to us.
A lot of people have wanted to know how we found the cancer in the first place so I thought I'd give a quick story.
It all started about 6 months ago with her complaining that her tummy hurt. well, with a 3 year old, it is hard to know if it is stomach ache, or pain. She also didnt eat much. I thought maybe she might even just be hungry and would encourage her to eat. She would complain a bit every day for about a week then be back to normal. I thought maybe it was something she ate.
the next month she started complaining again and I took her up to the ER where my husband works and had them do a urinalysis which was fine. again, she improved and the symptoms went away. after a couple more months, she started complaining again and I thought maybe it was a urinary tract infection so I took her up to the ER again for another urinalysis which again showed nothing. I went back and forth wondering how much she really hurt, or if it was all a matter of being a dramatic 3 year old. the last month or more she has complained daily. I scheduled an appointment with her pediatrician and they did a water deprivation test and a series of blood work. They were thinking maybe diabetes or diabetes insipidus since she has also been drinking and peeing a TON! she would go through 4 pullups a night and drink all day and all night. if she wasnt up in the night for a drink, she was up because of pain. The tests the pediatrician did, all came back normal. I still knew something was wrong. we started thinking maybe she was lactose intolerant or gluten intolerant. I went shopping for all the special food I would need and talked with friends that had the allergies in their familes. I hoped this was the answer. I was at the end of my rope.
On Wednesday March 3rd she was in a lot more pain than usual and would not eat. I gave her tylenol and it seemed to only help a little and she layed in bed all day. when my husband Brandon got home that night she was fine. she was running around being silly. I thought maybe it had been gas. that night she woke up screaming in pain a few times. It seemed to be a lot worse. I gave her more tylenol and some benadryl to help her sleep. the next day March 4th started out ok but quickly progressed to screaming. The tylenol did absoutely nothing to help her and I knew in my heart she had something really wrong with her. I called my husband at work and let him listen to her screams. He told me they were slammed in the ER but to bring her up.This was around 2 in the afternoon. They got her in for an ultrasound around 4:00. The technician had a strange look on her face but didnt say anything. Brandon was in the room and thought the left kidney looked strange. He went back to work and said to call when the radiologist came. The radiologist came while he was still gone and did the ultrasound over again, i heard him whispering to the technician and felling Gracies tummy. He told me there was some sort of mass that would need further testing. then he asked "are you ok?" I said "yes, i am just tired" I was clueless at that point why he was really asking me that question. I never though cancer. I guess i was in denial. I thought a mass could maybe mean a cyst or an ulcer. I was pretty clueless. He told me he would go talk to my husnband and for me to wait in the waiting room. I waited for about 15 minutes when Brandon came out crying. I looked at him and said "WHAT?!!!" He said "she has a tumor, Lisa" We both cried. I was still in quite a bit of denial and shock. They said to take her to St. Francis Childrens hospital here in Tulsa to be admitted for further testing. The next morning they got her in for a CT and found the tumor. later that day they did surgery for a biopsy of the tumor and to put in a chemotherapy port. The biopsy showed it was a neuroblastoma. It got so real after that. I bawled for the next 2 days. Since then , we have felt so much love and comfort and support. We appreciate all of you for your love for us and for Gracie. We know our Heavenly Father hears and answers prayers. Please continue to pray for all of us to have strength through this time. She starts her first round of chemotherapy tomorrow. Im not sure how often I will post but I am thankful to Keri for helping me with this. Thanks for everything and for the donations. We cant begin to tell you how much it means to us.
Good News
I love this picture of Gracie and her Daddy!
The many prayers are working!! Brandon and Lisa have received so much strength through the prayers of hundreds of people, probably thousands by now with the countless prayer rolls of many faiths she has been added to. We know that there is a loving God in heaven who hears and answers prayers. He has lifted and held Gracie and her family.
In addition to the added strength they have received it is no small miracle that her latest tests have been good results! Gracie has undergone numerous tests in the past few days and most have delivered good news! It appears that the cancer has not spread to other areas of her body. Her bone marrow and bones have not been affected either. Gracie is still considered a high risk patient because of her age and because lymphnodes on both sides of her body are affected. She will have another test tomorrow to make sure other areas are good and they won't know the final staging until late next week.... Okay, So,really I don't understand what any of that means and that, is even the condensed english version not the confusing Dr. Jargon. What I do understand ...is that it could be worse! So we will celebrate the good news. Thank you to all of you for the many prayers offered on her behalf!
Gracie will start chemotherapy tomorrow and I can only imagine how difficult that is going to be. She has not been feeling well at all today and that is BEFORE chemo I know the chemo is going to make our sweet little Gracie very sick and that will be hard to see. Lisa said she washed Gracie's hair yesterday and realized it would probably be the last time in a long time. But...She will be one stylish girl with some cute hats and hair bows she's been given.
And I can't leave out the other kids. Shad, Chloe and Von have been doing great and are real troopers. They miss having mom and dad and Gracie home but are being well cared for by Grandma D and Grandpa & Grandma B and Aunt Shayla! Good thing that baby Von is an easy baby and Shad and Chloe are such good helpers!
Once again, thank you Mostly for the prayers but also the donations!! This will be a long fight physically emotionally and unfortunately Financially! Every bit helps!
Tuesday, March 9, 2010
A better day
Gracie getting some much needed rest. Such a sweet Angel girl.
Today was a much better day for Gracie. The blood trasfusion must have helped with her energy level. Here she is going for a ride in a wagon (at the hospital). She has some more tests tomorrow to find out just how far this cancer has spread. We are hoping and praying for a miracle. She will start chemotherapy in the next day or so.
Other ways to donate
Here are a couple alternative ways to donate to Gracie thanks to a couple of Lisa's friends. Jeanna is the owner and artist of "Beans things". She has both an etsy and an artfire website where you can purchase handmade gifts. She has committed to donating %50 of all purchases done in Gracie's name to Gracie's fund. Visit her website and make sure you put Gracie's name in the comments.
Handmade pendant from Beans things.
Handmade pendant from Beans things.
Sara Mendenhall, a good friend of Lisa's is a scentsy consultant. If you haven't seen scentsy products before they are awesome (wickless yummy smelling candles). Scentsy has teamed up with the Sunshine Kid foundation to help kids with cancer. The Sunshine Kid foundation provides exciting positive group activities to children receiving cancer treatment all over the country. Scentsy will donate %100 of the net profit on all "sunshine kid" warmers too the Sunshine Kid Foundation. Sara has committed to donated %100 of her net profit for each "sunshine kid" warmer directly to Gracie's fund.
So there you have it, a couple great ways to contribute to Gracie as well as getting some cool stuff for yourself or a friend
Happy Healthy Gracie
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