Today was the shortest day ever. Her apointment was 8.15 and guess what, WE did not have to wait for 3 hours :) we were pretty much on time- just 30 minute wait time. And we were out from that hospital 9.15 :)
Tomorrow we have little longer day.
Starting from Tuesday next week she'll het 6 extra hours added to her scedule. Dr Gajjar just made us another informed consent statement- study called FAST ForWord program. This is a part of the research study to find out if a computer based training system can prevent some or all fo the decresed in school performance that sometimes occurs in children treated for brain cancer. Half of the patients will receice the computer bvsed program, and the oter half will receive regular help with their schoolwork. and seems like we are the oter half( but it could change, it all depends ... The sudy is for PNET< ATRT or medulloblastoma patiens who received radiation therapy to their brain.
I know it'll be very frustrating for regina since she does not like orders given to her. She has her own mind and it's very hard for me or the others explane it to her that she has to listen to us :(
Wednesday, June 30
Monday, June 28
Blue Monday....
UGH. Regina had 8.15 radiation session- she SUPPOSED to have it 8.15- but the mashine broke down just before she supposed to start her treatment. SO the guy comes out to the waiting area , sees us, and I knew immediatily something was wrong. We waited until 10.30 - it got fixed by then. And finally they invited us in and said the problem is fixed. Table was in wrong position and hight and it screwed up the whole system.
I was worried sick- what if they dont fix the problem, what is going to happen, where are they going to send us.... but luckily they found the problem and fixed it. :)
9 more weeks of head and spine radiation and then for 4 weeks Head only radiation :(
I was worried sick- what if they dont fix the problem, what is going to happen, where are they going to send us.... but luckily they found the problem and fixed it. :)
9 more weeks of head and spine radiation and then for 4 weeks Head only radiation :(
Friday, June 25
It's hard...
I broke down and cried today.
Regina woke up this morning and told me that her troat hurts and she is weak. Me , of course got really worried . around 9 am she had her another IQ test done. And let me tell you about that test. IT WAS HARD. She is only 4 years old but questions she got asked were hard for me to answer. She had to remember sentenced she had to READ OUT LOUD 6-7 word senteces,( of course she could not do that) she is only 4 years old. She got really frustrated and started to cry. And I started to cry. And after 1 hour some stupid testing we finally got to go and it was time for her radiation treatment.
we had to wait there for 2 long hours. We saw nurse first because I told them that regina complained some pain and weakness. She got some medications to controll that. and then , when they sedated her because she can not lie down without movement I started to cry and I cried about 2 hours. Of course everybody was asking if they can do something to make me feel better and if they can get me something. But I just wanted it all go away and I wanted to wake up and see that it was all one bad nightmare. :(
Finally one of the sedation nurses came to me and spoke at least 25 minutes and It helped. I finally calmed down and it was time to go to recovery room and get her because she had just woken up. Thanks to Pam who's been working in ST jude for 27 years and seen everything( including crying psycho mothers) I stopped crying :)
Now it is 7 pm and I feel little sick. I think I cryed to much :)
Regina is doing better. she had her dinner and dessert and is ready to do some crafts. :)
Regina woke up this morning and told me that her troat hurts and she is weak. Me , of course got really worried . around 9 am she had her another IQ test done. And let me tell you about that test. IT WAS HARD. She is only 4 years old but questions she got asked were hard for me to answer. She had to remember sentenced she had to READ OUT LOUD 6-7 word senteces,( of course she could not do that) she is only 4 years old. She got really frustrated and started to cry. And I started to cry. And after 1 hour some stupid testing we finally got to go and it was time for her radiation treatment.
we had to wait there for 2 long hours. We saw nurse first because I told them that regina complained some pain and weakness. She got some medications to controll that. and then , when they sedated her because she can not lie down without movement I started to cry and I cried about 2 hours. Of course everybody was asking if they can do something to make me feel better and if they can get me something. But I just wanted it all go away and I wanted to wake up and see that it was all one bad nightmare. :(
Finally one of the sedation nurses came to me and spoke at least 25 minutes and It helped. I finally calmed down and it was time to go to recovery room and get her because she had just woken up. Thanks to Pam who's been working in ST jude for 27 years and seen everything( including crying psycho mothers) I stopped crying :)
Now it is 7 pm and I feel little sick. I think I cryed to much :)
Regina is doing better. she had her dinner and dessert and is ready to do some crafts. :)
Wednesday, June 23
June 23d, 2004
This is the day I'll remember forever!!! REginas first Radiation Treatment. She did really well. Nurse told me that she might be little whiny and tired today. But she is not. SHe is all smiles, running around and really happy. :)
Tuesday, June 22
Looks who's smoking??
I don't mind smokers. I was smoker once. You know, I smoked 5-6 ciggis per day. SOmetimes 10, but never more. HEre in RMH almost everybody smokes. I swear. Even 3 month old babies.
Close your eyes, imagine you are that 3 month old, You are sittin on your mamas lap. Around you are lot of people who all are smoking. Lot, I mean 7-8 persons. THey smoke, and smoke and then they light up new ciggy and smoke again. WHAT?? Guys! COme on. If you dont care about your life care about your little boys life who is allready getting Chemo treatments. :( I feel sad.
( I never smoked around my kids, and if They happened to come around I threw the cig. away , brushed my teeths and even changed my clothes. I did not wash my hair. 7 times a day - its way to much.
Like I said before, I don't mind people who smoke but do it on right place and when small sick kids are not present.
Close your eyes, imagine you are that 3 month old, You are sittin on your mamas lap. Around you are lot of people who all are smoking. Lot, I mean 7-8 persons. THey smoke, and smoke and then they light up new ciggy and smoke again. WHAT?? Guys! COme on. If you dont care about your life care about your little boys life who is allready getting Chemo treatments. :( I feel sad.
( I never smoked around my kids, and if They happened to come around I threw the cig. away , brushed my teeths and even changed my clothes. I did not wash my hair. 7 times a day - its way to much.
Like I said before, I don't mind people who smoke but do it on right place and when small sick kids are not present.
X marks the spot
Tomorrow, 9.30 my sweet little girl will get her first Radiation treatmnent. Her MRI showed no signs of Tumor growing back which means she does not need high dose radiation. :) News like this make me really happy.
Her little bones are getting a last scan now and tomorrow before her treatment we'll see eye doctor and check her hearing as well. I'm exited about treatment getting started. :)
Her little bones are getting a last scan now and tomorrow before her treatment we'll see eye doctor and check her hearing as well. I'm exited about treatment getting started. :)
Monday, June 21
YEYEYEYEEEE!!!!
Everything went well . And her MRI was also good. No signs of tumor growing back :)))) Days full of good news make us both happy. Hickman catheter is in and seems like she is not in much pain . But today when they took her away from me after she got sedated, I started to cry. I dont know why . I cryed and cryed and cryed and then stopped . I guess 20 minutes was enough :D |Everything they do to her just scares me. ALl the tests, all the scans all the doctors. Yeah, all of them are nice but I'm still scared not knowing how will she react when real party starts :(
Friday, June 18
ANother day in Paradise - not
Today was MRI day. We did not get to see the resaults yet. But hopefully on Monday we'll know if her little head is clean.
Also on Monday shell get Central line. :( She'll hate it for sure. :( Then on tuesday she gets more bloodwork done and, on wednesday she'll het her first Radiation treatment. Praying, and praying and praying for the best.
Today we finally rented a car and took a drowe around the hood. IT's nicer away from here. We went to applebees, and Sears and little mall close by. Regina was exited. SHe liked being away from RMD.
Tomorrow we'll go to Graceland and on sunday we'll have fathers day lunch, because my husband is going back to CA . My son nees some attention also. He'll forget how his mom and dad look. He allready does not want to talk to me on phone. :(
I'm getting scared. I don't know what to expect. I do,nt know how will she react to her treatment. I dont want her to suffer.
Also on Monday shell get Central line. :( She'll hate it for sure. :( Then on tuesday she gets more bloodwork done and, on wednesday she'll het her first Radiation treatment. Praying, and praying and praying for the best.
Today we finally rented a car and took a drowe around the hood. IT's nicer away from here. We went to applebees, and Sears and little mall close by. Regina was exited. SHe liked being away from RMD.
Tomorrow we'll go to Graceland and on sunday we'll have fathers day lunch, because my husband is going back to CA . My son nees some attention also. He'll forget how his mom and dad look. He allready does not want to talk to me on phone. :(
I'm getting scared. I don't know what to expect. I do,nt know how will she react to her treatment. I dont want her to suffer.
Wednesday, June 16
We are in Memphis now
We are here. It's hot and rainy and humid and all the things same time. So different from CA weather.
We are staying to Grizzly house for a week and on tuesday( I hope) we get a room in Ronald McDonald house. I'm not really happy with the neighbourhood but oh well, the things we do and places me move for our childrens well being.
I think I had to explain REginas story LIKE 100 times today. How it's started, when it's started, how many times she threw up, other symptoms, other siblings living in our house.... But everybody is SUPER nice here and seems like REgina adjust well. She still does not want to be poked....
We are staying to Grizzly house for a week and on tuesday( I hope) we get a room in Ronald McDonald house. I'm not really happy with the neighbourhood but oh well, the things we do and places me move for our childrens well being.
I think I had to explain REginas story LIKE 100 times today. How it's started, when it's started, how many times she threw up, other symptoms, other siblings living in our house.... But everybody is SUPER nice here and seems like REgina adjust well. She still does not want to be poked....
Monday, June 14
Whiny day
IT was really whiny day today. REgina was whining, Gabriel was whining I felt like whining and screaming same time because nobody listened to me. And all this whining just makes me hungry. I never felt this way before- I mean Hungry all day along. And If I did not get food righ away I felt really dizzy. IT's really really weird feeling. I get hot all over my body and then I suddenly get so hungry I could eat away everything I see. I hate feeling like this.
But on a happier note- One of my online friends made Regina beautiful Quilt. Purple, green and yellow colors. It's B E A U T I F U L !!! I swear. I wish I had quilt like this :) Maybe I make it one day....
But on a happier note- One of my online friends made Regina beautiful Quilt. Purple, green and yellow colors. It's B E A U T I F U L !!! I swear. I wish I had quilt like this :) Maybe I make it one day....
HAHA
Regina is funny. HAHA. I told her not to run inside the house. Well, she was playing and suddenly stood up and Said:"Mommy, I need to go to potty."
Me: "Ok."
Her:" Mommy, mommy, mommy. CAN I RUN, I really need to go to potty!"
Me:" Go ahead"
bump, bump bump, bump... HAhaha. I wish she would ask this kind of questions every time she does something she is not allowed to. :D
Me: "Ok."
Her:" Mommy, mommy, mommy. CAN I RUN, I really need to go to potty!"
Me:" Go ahead"
bump, bump bump, bump... HAhaha. I wish she would ask this kind of questions every time she does something she is not allowed to. :D
Sunday, June 13
LOVE
I feel your happiness
I'm sad whey you cry
Together we get rid of the pain and suffering
and we see rays of hope in the sky
You are my little fighter
You are strong and unique
little smiles & laughter
Will set you free.
......You are loved by me....
I'm sad whey you cry
Together we get rid of the pain and suffering
and we see rays of hope in the sky
You are my little fighter
You are strong and unique
little smiles & laughter
Will set you free.
......You are loved by me....
Another day-
Regina is watching tv. We had more friends visiting today. She got MORE princess stuff. Princess, princes, princess princess- PINK PINK purple PINK. Don't get me wrong. I love pink and purple and Red. But to much on same time is just TOOOO MUCH PINK!!!! And I think this PINK mania Is making me hungri. I was down to 135 lbs. Now, within a month I gained 5 lbs. I want to go to gym, but I just have no positive enerty to do so. I was gym junkie. I went there every day, I worked out with trainer . I, I , I , I . But now I need to think about her. And eventually my well being is not so important anymore.
My sweet little pink princess needs more attention and care than ever before. I think I'm stressing out way to much about everything. I think about FUTURE, and not knowing what will happen in 1, 2....6 months scares me. I don't like to live in darkness. I want to KNOW now. I want to know why her. I demand to know why not me. Somebody said that god punishes our children for our mistakes? I just want to know what have I done wrong so far? I love her to much? Is that the case??
My sweet little pink princess needs more attention and care than ever before. I think I'm stressing out way to much about everything. I think about FUTURE, and not knowing what will happen in 1, 2....6 months scares me. I don't like to live in darkness. I want to KNOW now. I want to know why her. I demand to know why not me. Somebody said that god punishes our children for our mistakes? I just want to know what have I done wrong so far? I love her to much? Is that the case??
Saturday, June 12
:(
All this stressing around ... I woke up yesterday unable to move my left side. My BACK is killing me. Pain is unbelivable from neck to middle back. When it rains it pours. And it's been pouring past month. I want to see sunshine and wake up and our lives are back to normal. At least I can dream about it. :)
It's saturday and sun is out.
2 more days before me and my daughter Regina will travel to Memphis , Tennessee.
On May 28th she had operation to remove 7x5x2 cm malignant brain tumor called PNET. Now we have to go to St Judes to get her Radiation started. She'll get 5 weeks of radiation- 5 times a week. Then we get to come home for a month and then we have to go back to get started with High dose Chemotherapy.
On May 28th she had operation to remove 7x5x2 cm malignant brain tumor called PNET. Now we have to go to St Judes to get her Radiation started. She'll get 5 weeks of radiation- 5 times a week. Then we get to come home for a month and then we have to go back to get started with High dose Chemotherapy.
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