Life has just been really busy for all of us lately. Gracie has completed 6 rounds of chemo! We will go in on Tuesday for a ct to see how her tumors have reacted. Surgery will probably follow to remove the two tumors. If th ct shows significant shrinking we may just continue the chemo for now.
Paul had his dance recital on the 18th. He did so wonderfully. He really enjoyed the recital and is already asking about next year.
Thank you everyone for all of the thoughts and prayers. We will definately need them this week!
Saturday, June 26, 2010
Monday, May 31, 2010
Rough week
Sorry it has been so long since my last post. Gracie has had a rough week. I hate seeing her little spirit down and in pain. It just breaks my heart.
She has had very bad stomach pains this week. She will sometimes drop on the floor and grab her tummy and tell me her stomach hurts. Nothing could break a mommy's heart more especially when you cant do anything but hug her through it. She also cant sleep because of these pains. She wakes up many times during the night and her naps are always interupted. She has also stopped eating again the last two days. I hate to see her loose so much weight already. I dont know the number yet...but I can see it very clearly.
Her hair also started falling out on Saturday. She would lay with us on the couch and after we would get up we would notice all of her beautiful blonde hair all over us. She has noticed the hair falling out and it hasn't seemed to bother her. So of course, we just continue on and not make a big fuss over it until Mark and I are alone. It's just that outward sign that Gracie is actually going through all of this.
Tomorrow is round 3 of Chemo for Gracie. I really hope this week is easier for her.
On a positive note Paul and I had a "special day" out on Saturday he wanted to go see Shrek and go get ice cream. Of course mommy said yes because it was his day. He has been so wonderful through all of this. He is such a wonderful big brother!
She has had very bad stomach pains this week. She will sometimes drop on the floor and grab her tummy and tell me her stomach hurts. Nothing could break a mommy's heart more especially when you cant do anything but hug her through it. She also cant sleep because of these pains. She wakes up many times during the night and her naps are always interupted. She has also stopped eating again the last two days. I hate to see her loose so much weight already. I dont know the number yet...but I can see it very clearly.
Her hair also started falling out on Saturday. She would lay with us on the couch and after we would get up we would notice all of her beautiful blonde hair all over us. She has noticed the hair falling out and it hasn't seemed to bother her. So of course, we just continue on and not make a big fuss over it until Mark and I are alone. It's just that outward sign that Gracie is actually going through all of this.
Tomorrow is round 3 of Chemo for Gracie. I really hope this week is easier for her.
On a positive note Paul and I had a "special day" out on Saturday he wanted to go see Shrek and go get ice cream. Of course mommy said yes because it was his day. He has been so wonderful through all of this. He is such a wonderful big brother!
Monday, May 24, 2010
Two down Four to go before scan.
Please continue prayers that tumors are shrinking!
Gracie did really well today. She was sooo brave. She even assisted the nurse today. She told the nurse to clean her "tubie" then to put in the water then to clean it again. It was so cute. She was so fascinated by it all. She did really well with the inserting of her "tubie" but when it came time to remove it of course she had a mini melt down. Gracie slept all the way home from from her appointment. When we got home she wanted a Fruit Roll-up...of course, mommy said yes.
Gracie only received the Vincristine today so I am hoping this will be an easier week for her. We have one more easy week and then she will receive both of her chemo meds on the following appointment.
Gracie did really well today. She was sooo brave. She even assisted the nurse today. She told the nurse to clean her "tubie" then to put in the water then to clean it again. It was so cute. She was so fascinated by it all. She did really well with the inserting of her "tubie" but when it came time to remove it of course she had a mini melt down. Gracie slept all the way home from from her appointment. When we got home she wanted a Fruit Roll-up...of course, mommy said yes.
Gracie only received the Vincristine today so I am hoping this will be an easier week for her. We have one more easy week and then she will receive both of her chemo meds on the following appointment.
Sunday, May 23, 2010
What a wonderful evening.
Last night the whole family and I went out and supported Uncle Matt shaving his head in support of childrens cancer research. Last night was about celebrating love and life. Matt more than doubled his original fundraising goal!! What a wonderful thing he did for children like Gracie.
Gracie did pretty well last night. Of course, she did start getting tired but we did hang out until after Uncle Matt shaved off his locks! LOL. We couldn't miss that. We did get some wonderful pictures last night but I am unable to get my darn card reader to work this morning to upload. Going to try and figure all of this out today.
Gracie has been doing pretty well. I think she is having awful jaw pains which is causing her to not eat as well as she would like. Everything she eats now we celebrate! This morning she wanted a doughnut....so guess what, she got it!
Tomorrow we head back in for more chemo.....4 more rounds after tomorrow then we go in for more scans. Please everyone pray that they are shrinking!!!!
Thanks everyone again for all the support and love! Oh and Tamara thank you so much for Gracie's Baby Alive!! She was so tickled!
Gracie did pretty well last night. Of course, she did start getting tired but we did hang out until after Uncle Matt shaved off his locks! LOL. We couldn't miss that. We did get some wonderful pictures last night but I am unable to get my darn card reader to work this morning to upload. Going to try and figure all of this out today.
Gracie has been doing pretty well. I think she is having awful jaw pains which is causing her to not eat as well as she would like. Everything she eats now we celebrate! This morning she wanted a doughnut....so guess what, she got it!
Tomorrow we head back in for more chemo.....4 more rounds after tomorrow then we go in for more scans. Please everyone pray that they are shrinking!!!!
Thanks everyone again for all the support and love! Oh and Tamara thank you so much for Gracie's Baby Alive!! She was so tickled!
Wednesday, May 19, 2010
Ups and downs
Gracie vomited for the first time today. It was so sad because this is the first time she has EVER done that. Afterwards she fought me soooo hard not to take her anti nausea medicine. It is really funny because a minute before that she had her blood sugar checked and a shot for her hypoglycemia....but wouldn't touch that fruity flavored medicine. Hopefully she will understand soon that the medicine does make her feel better.
Gracie does really well after the initial morning nausea. She has been happy and playing. She isn't eating as much as she used to and we are really struggling with the fluids. But through this all her blood sugar is still doing well.
Keep up the prayers!
Gracie does really well after the initial morning nausea. She has been happy and playing. She isn't eating as much as she used to and we are really struggling with the fluids. But through this all her blood sugar is still doing well.
Keep up the prayers!
Tuesday, May 18, 2010
Uncle Matt needs help...
He is going to shave his head in support of children like Gracie on Saturday. It is for St Baldrick's. They raise for money for childrens cancers. If you want to support Uncle Matts efforts on Saturday please go to
http://www.stbaldricks.org/participants/mypage/participantid/408994
http://www.stbaldricks.org/participants/mypage/participantid/408994
Crazy few days
Sorry it has been so long since I have updated...it has been really crazy here.
On Friday we met with Dr. Dome and our surgeon. Both were absolutely amazing and. It is so nice to be compforted by their amazing energy for helping Gracie. We decided to have a portecath inserted for Gracies chemotherapy. The procedure was set for Monday.
On Sunday we went to hang out with Matt. It was really nice to have the support around us Sunday. Mark and I were really having a tough time. We knew that this was the last day before all of the craziness began for Gracie. We drove to DC Childrens on Sunday night for Gracie to be admitted. The wanted to keep an eye on Gracies blood sugar during the fasting she would need for the surgery the following morning.
Gracie was an absolute hit on the Oncology floor. Everyone was just amazed by her energy. She was sooo happy to play in the toy room that was across from our room....how convenient.
We started our day very early on Monday morning. They came and got Gracie around 7 and too her to surgery. It was only a 45 minute procedure. During that time Mark and I went to go and eat breakfast and just really release all of the emotions we had been experiencing. Mark is my rock and just the most amazing husband. He was so strong for Gracie and I. He kept me positive and happy through all of this.
When we were finally reunited with Gracie she was still out from the surgery. When she finally woke up I was very surprised that she did so well. She just wanted mommy and daddy to hold her. We sat in recovery for quite some time.
When we finally got back to her room it was around 11:30. Gracie was ready to play already. What a little trooper. So daddy and I got her some toys from the play room and played with her in her room.
Dr. Dome came around around 12:30 and we had our family meeting on the care of Gracie. It was soooo much information. Our plan for now is to start her on very mild forms of Chemo. After 6 weeks they will reevaluate with a ct and check progress. If her tumors have shrunk considerably they may continue for another 6 weeks...if minimal shrinking or no shrinking they will remove after 6 weeks. We still know very little about her tumors and we really wont until they get in surgery and remove them.
An interesting piece of information that was clarified. The Dr.s kept telling us the 2 tumors were on her left kidney (the smaller one)......They are actually on her right kidney. The doctor then wanted to do an EKG for future purposes. Another form of chemo that they may use in the future could cause heart damage so they basically wanted to get a good baseline and make sure that her heart is ok. Gracie had a blast walking around the hospital. During the EKG though, Gracie was so tired, her poor little eyes kept shutting....but the pain of the scan near her port was a little painful for her. When we got back to the room they gave her some tylenol to help.
Mark and I left Gracie with her wonderful nurse for a moment after that so that we could go to the gift shop and get Gracie a balloon...she had been admiring everyone elses in the hospital. She had so much fun with her nurse. They walked the halls searching for circles on the floor. Gracie was soo excited about her balloon and didn't let it go the entire time we were there.
When we finally got back to the room, Gracie took a well deserved nap. The nurses then came around with Gracies chemo. Gracie slept through the whole thing. It was really quick. Each round took about a minute. Afterwards we had to wait around for about an hour to see how she reacted. She slept the entire time. Poor baby.
Finally at around 8:30 we got released. Gracie did wonderfully all the way home.
This morning Gracie did have a bit of nausea but we gave her the anti nausea meds and she has been doing wonderfully. She is eating and playing and happy. I just hope that things continue this well for her. She is sooo strong...I am just completely amazed by her!
On Friday we met with Dr. Dome and our surgeon. Both were absolutely amazing and. It is so nice to be compforted by their amazing energy for helping Gracie. We decided to have a portecath inserted for Gracies chemotherapy. The procedure was set for Monday.
On Sunday we went to hang out with Matt. It was really nice to have the support around us Sunday. Mark and I were really having a tough time. We knew that this was the last day before all of the craziness began for Gracie. We drove to DC Childrens on Sunday night for Gracie to be admitted. The wanted to keep an eye on Gracies blood sugar during the fasting she would need for the surgery the following morning.
Gracie was an absolute hit on the Oncology floor. Everyone was just amazed by her energy. She was sooo happy to play in the toy room that was across from our room....how convenient.
We started our day very early on Monday morning. They came and got Gracie around 7 and too her to surgery. It was only a 45 minute procedure. During that time Mark and I went to go and eat breakfast and just really release all of the emotions we had been experiencing. Mark is my rock and just the most amazing husband. He was so strong for Gracie and I. He kept me positive and happy through all of this.
When we were finally reunited with Gracie she was still out from the surgery. When she finally woke up I was very surprised that she did so well. She just wanted mommy and daddy to hold her. We sat in recovery for quite some time.
When we finally got back to her room it was around 11:30. Gracie was ready to play already. What a little trooper. So daddy and I got her some toys from the play room and played with her in her room.
Dr. Dome came around around 12:30 and we had our family meeting on the care of Gracie. It was soooo much information. Our plan for now is to start her on very mild forms of Chemo. After 6 weeks they will reevaluate with a ct and check progress. If her tumors have shrunk considerably they may continue for another 6 weeks...if minimal shrinking or no shrinking they will remove after 6 weeks. We still know very little about her tumors and we really wont until they get in surgery and remove them.
An interesting piece of information that was clarified. The Dr.s kept telling us the 2 tumors were on her left kidney (the smaller one)......They are actually on her right kidney. The doctor then wanted to do an EKG for future purposes. Another form of chemo that they may use in the future could cause heart damage so they basically wanted to get a good baseline and make sure that her heart is ok. Gracie had a blast walking around the hospital. During the EKG though, Gracie was so tired, her poor little eyes kept shutting....but the pain of the scan near her port was a little painful for her. When we got back to the room they gave her some tylenol to help.
Mark and I left Gracie with her wonderful nurse for a moment after that so that we could go to the gift shop and get Gracie a balloon...she had been admiring everyone elses in the hospital. She had so much fun with her nurse. They walked the halls searching for circles on the floor. Gracie was soo excited about her balloon and didn't let it go the entire time we were there.
When we finally got back to the room, Gracie took a well deserved nap. The nurses then came around with Gracies chemo. Gracie slept through the whole thing. It was really quick. Each round took about a minute. Afterwards we had to wait around for about an hour to see how she reacted. She slept the entire time. Poor baby.
Finally at around 8:30 we got released. Gracie did wonderfully all the way home.
This morning Gracie did have a bit of nausea but we gave her the anti nausea meds and she has been doing wonderfully. She is eating and playing and happy. I just hope that things continue this well for her. She is sooo strong...I am just completely amazed by her!
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