Wednesday, January 30
We also briefly discussed Reginas follow up therapy, because we want to do something instead of just waiting and hoping that nothing pops up from somewhere.
Dr Dhall suggested LOW dose temodor and accutane therapy. TEmodor is chemo, but together with accutane they compliment each other . BUT, if Reginas counts do not recover as well as needed, then we just do accutane ( which is actually ance drug). It has some side effects- blurred vision, fluid build up in brain( which will be removed through spine , Spinal tap). If it side effects get to severe, then we just stop therapy and keep on monitoring her. This therapy will last most likely up to a year( if she tolerates it well).
Now we are just waiting for side effects to show up... Please go donate blood and platelets. Platelets are needed more. Next week she needs most likely 3 platelet transfusions. Please :) It does not matter what blood type you have when donating platelets.
Tuesday, January 29
We spent 8 hours in CHLA today . REgina received her Last Round Of Hight Dose CHemo!!!! Wohooowohohoooooo.... And on friday she will have her Second CHLA stem cell transplant.:) WOHOHOHOOOHHOOHOHO
I am very exited, but scared same time. I am already panicking about what's next... We hope lots of hot summers with pool parties and Estonian Trips.:)
Sunday, January 27
Tomorrow ( monday) and Tuesday REigna will receive very toxic chemo. First she will get 1 hours hydration, then 2 hours of IV chemo and then 4 hours of FLuids. SO we will Be in CHLA from 7.30 till 3o'clockish....
On Tuesday same thing. Then wednesday and thursday will be OFF days, and Friday REgina will receive her stem cells back.:) PLEASE, extra special good thoughts are needed this time. You all know why. We can only hope that this is Reginas last round of CHemo EVER.
I am just asking your understanding when I do not act as enthusiastic as I should. I am trhilled that Regina is doing great, and I am thrilled that we are DONE... But I am not so thrilled about how I feel myself. I am just staying realistic.- NOT pessimitic-
Thursday, January 24
Today started with lots of rain and wind, but it all calmed down around 7 o'lockish.. Just in time when I had to take kids to school. REgina was very exited about rain. She went and digged out her Little Mermaid Umbrella.WHen Rain stopped she just sighted and told me- Oh man, not again, why does rein has to stop when I am ready for it..
No more school for Regina. Today was day 7 for her chemo ( last round)AND side effects are starting to show up. Let me tell you, whoever thinks that oral chemo is fun, is WRONG!! Oral chemo is discusting , nasty, ugly, depressing and horrible tasting. REgina can handle oral chemo pills, BUT she has hard time swollowing fluid chemo. TOday she finally threw up. Big time. Gabriel ran downstairs and grabbed couple of Reginas protective masks and brought one for me to cover up my nose, so I could not smell reginas vomit...lol
Anyway, NO MORE SCHOOL FOR REGINA. No more school at least until Valentines day.
I want you to ask a huge favor. PLEASE GO DONATE PLATELETS . REgina needs at least 4 platelet transfusions. IT will be long process, but PLEASE do so.
Please keep your fingers crossed for successful transplant.
REgina has very toxic chimo on Monday and Tuesady, ( we have to wash her 3 times within 24 hour period, to wash off Chemo from her skin, it comes out from her sweat glands). Scary stufff... So again, if you thin that chemo is fun, think again. There is nothing fun about it.
Side effect, after side effect, ... It gets very scary...
Anyway, after this is over, I will take my time and smell the roses..., and I promise, I WILL FIND MYSELF SECOND JOB!! My first job always will be MOM!!!
We will be in ROnald McDonald house in LA, and you can reach us by calling on my cell- 9492906958.
What Are Platelets?
Your blood is made up of several components, the fluid that surrounds your blood cells is called plasma; it contains proteins, coagulation factors and other metabolites. The different types of cells in blood are the red blood cells, white blood cells and platelets. The platelets are the cells that help to form a clot and keep you from bleeding.
What Do Platelets Do?
Most of the platelets in the body are stored in the bone marrow, liver, and spleen. When the number of circulating platelets is decreased, the body responds by sending platelets from storage areas into the blood circulation. There are a large amount of platelets in the circulating blood as well.
Who Needs Platelets?
Patients receiving chemotherapy and/or radiation treatment and those who are having a Bone Marrow Transplant, have especially low platelet counts and can bleed very easily. We need people to give platelets to maintain an adequate supply for these patients.
How Do We Get Platelets?
When a unit of whole blood is collected from a donor, only one unit of platelets can be made from that donation. As you can imagine, with the great need of the patients who require platelet transfusions, many more must be collected. Using a blood cell processor, at least six units of platelets can be collected from one donor in a Plateletapheresis donation.
The procedure takes approximately two hours. The donor will have a needle in each arm for that amount of time. In order to have a successful apheresis procedure, the donor must have very good veins. The blood will flow from one arm to the collection instrument where the platelets are removed and the balance of the blood is returned to the donor in the other arm. Sterile plastic software is used in the blood cell processor to collect the platelets from the donor. The donor's blood is never in contact with the instrument itself -- so there is no risk of being exposed to another person's blood.
Who Can Donate?
The requirements for donating platelets are the same as for a regular blood donation, except that a platelet donor cannot have aspirin or other anti-inflammatory drugs, like ibuprofen, for at least 36 hours prior to the donation. These drugs greatly weaken the effectiveness of platelets and therefore of platelet transfusions. And of course the donor must have very good veins in both arms.
Does Blood Type Matter?
Since there are no red blood cells in a platelet product, we are not limited to using the same donor blood types as with red cells.
Since the process of donating platelets takes two hours and we have a limited number of spaces, we must closely monitor our times of donation. Plateletapheresis donations are scheduled by appointment only. We have appointment times Monday through Friday starting at 7:30am, 8:00am, 10:00am, 10:30am, 12:30pm, 1:00pm, and 3:00pm. Our Saturday appointment times are at 7:30am, 8:00am, 10:00am, and 10:30am.
To make an appointment or for any questions, call (323) 361-2441
Tuesday, January 22
5 temodor pills , 100 mg each. Copay for it - 280 dollars. Temodor is one of REginas chemo drugs. She has to take one 100 mg pill, then 3-20 mg pills. ANd past four days she has been on oral etoposide. TOmorrow we add those 4 temodor pills.. Not fun, not fun. I put all chemo drugs on table, lots of snacks next to it and I let her choose when she finishes them. Usually it takes about 30 minutes to take all those pills orally. I do not want her to throw upl, so that is why I am not forcing her to take it all at once.
BTW, without insurance this would have been about 800 dollars. So guys, eat your vegetables and fruits , and STAY AWAY FROM CANCER!!! IT is an order!!! BTW, Regina is doing pretty good :)
I have to share one funny story. My 6 1/2 year old boy Gabriel is very curious boy. He wants to know everything and asks gazillion questions per day.
This time he chose his topic- Babies and how that happens.
Gabriel knows that boy's have penises and girls have vagina's. He does know that it takes 2 people to make babies... BUT until last week he thought that all it takes is that "special"hug.. and BOOM, there is baby in your tummy. HE has been acting very confused and asking questions about How, how, how... he does not get it.lol
So I told him, I went straight to business. I told him. That special hug means, that boy has to put his penis into girls vagina. BUT you can not do it with your sister, or with your mommy. It is very wrong and not good thing to do.
Gabriel looks at me and tells me- that's it??? I am still not getting it. What does penis have in it??
HOnestly, at that moment I wanted to burst out laughing like I never laughed before. BUT I managed to keep my " streight purple face".. I really did not want to get into "sperm business yet", and I told gabriel.....
LISTEN Gabriel, your penis has magic dust in it, and that's it........ ( I know , stupid)....
I was not prepared what happened next. My handsome, smart, talented six year old pulled his pants down and started shaking his privates and screaming out loud.. I GOT magic baby dust on my penis. I will make lots of babies .... Mommy, do you want some baby dust.
At that moment, I just could not take it any longer I started laughing like I never laughed before. And so was gabriel. He pulled his pants back up and told me- Mommy, you are my "gilfriend", when I get older I will merry you and then we can use my baby dust.
I just hugged him and told him. Dear Gabriel, I love you very much. But one day you understand Why mommies and sons do not get married. You will find yourself one very beautiful girl and get married to that girl and then you can spread your baby dust. :)
BTW- We will be going to Ronald McDonald house on Saturday. Also, on saturday Regina has first part of her Psychological testing. It will be 3 hours long , but she needs it, and most importantly it is free of charge. This will let us know where Regina is mentally . How smart she is, how much she knows, etc.:) Keep your fingers crossed that tests show only good results. :)
Friday, January 18
Gosh. where do I start. Honestly, today was one stressful day for me. Day started out great. Awesome day. Wohooo.. But everything changed when we entered CHLA doors. To be exact--- CHLA outpatient pharmacy , which is now WALGREENS.
On our way upstairs I payed a visit to pharmacy because I wanted to pick up Reginas CHemo drugs... I knew Dr Dhall's team faxed rx to pharmacy last week. Guess what, walgreens did not receive their fax. So upstairs I go to see what happened.
Day hospital faxed it again and this time they received it... Usually it takes about one hour for them to fill rx's.. But this time it took 3 fuckin' hours. I was vivid. AND I had right to be . OF course things have to brake just before it is my turn to get meds. So I got Reginas etoposide( one chemo drug,,, and then , walgreens scanner stopped working... OR pharmacist printed out WRONG label that did not scan. SO they DID NOT GIVE ME reginas chemo drugs. I wanted to cry right there. THey told me to come back on monday... I just looked at him and told him =- You must be kidding me. I live in Laguna, and because of your broken scanner, or wrong code I have to waste 4 hours of my valuable time JUST TO visit you for one minute????
NOW, that is ONE REASON why I like Reginas meds to be refilled at least few days before chemo starts...( REason why they did not trust me with those chemo pills- is - Co payment for them was almost 300 dollars. !!! DUH. Come on ???? I visit that pharmacy at least 3 times a month, they know my by name...
I also told them, there is NO WAY I am coming back to chla, so please fax these prescriptions over to LAguna walgreens AND MAKE SURE, they have drugs by monday, if they do not PLEASE CALL ME!!!. I can't handle this kind of mistakes or errors very well. I just cant... I also cant handle people who question my values, and ways of living the way I live, and the number one thing that bugs me is- seriously- do you really think that I would take REgina to school when she could infect other kids with her " health" issues... SerioslY???
OK. Now about cool stuff... After that stressful noon incident.. We managed to keep our sanity and headed to Pershing Square ( spelling). It is in Downtown LA. REgina is one of Sunshine kids :) http://www.sunshinekids.org/
Amy( and his team) from Sunshine kids invited us , and other neuro/onco families to outdoors Ice skating . REgina was so exited to to it. It was her first time on Ice, and she was just all in smiles.... UNTIL... bang.... she fell flat on her ass ... She tried to protect her but with her hands, but instead she ended up hurting her both hands. :( Poor REgina, she was in tears. I never seen her so sad, she never cries because of pain and to see her crying just broke my heart. She was upset and sad and in pain... It was her first time and it had to end up like this... Ijust hope that she does not give up after this :)
When GABRIEL saw REgina fall, he also stopped skating and sat besides Regina the whole time. HE even fed Regina food, because he did not want REgina to feel any pain.
Now we are back home, and Regina is doing ok. Her wrists still hurt, but she is doing ok. She took her chemo and did not complain a bit. :)
Now, mommy Diana needs some stay sane thoughts. I am beyond stressed right now. I may look OK and crack my "stupid" jokes. The truth is, i am not ok. I do not think that I ever been so stressed. I want to see more happy people around me. I do not want people feel sorry for me, or tell me how strong I am.. I am not... I am loiek you, you , you ,and you... and Right now I am just like you... I am tired and sad, and unsure whats going to happen next....
Wednesday, January 16
Regina is doing OK. We had a fun play date with couple of good friends today. I never seen such well behaved group of kids. When I put dinner to table, all kids ( 5+ one baby) all ate then same food without complaining and then went upstairs to play. I was impressed... But then again, they all wanted to play came cube..... go figure...
On friday we are going to CHLA for labs, and after that Sunshine kids ( non profit org) has invited us to Ice Skating.( Pershing square) we will be there around 4 PM.
And that's it. Nothing really interesting is going on around here...
Monday, January 14
Regina is doing pretty good. Last friday I had to take her to see my doc, since I noticed tiny oozing thing under here eye Turned out, she had Impetigo ( contagious infection). She was given some topical antibiotic ointment and now it is healing.
In school she does alright. Little behind, but that's ok. She'll catch up. :)
Last round of chemo starts on friday.
PS. Big thanks to Reginas Angels Judy and Angie:)
Wednesday, January 9
We saw Dr Dhall today and had a nice long discussion about Regina.
Reginas last round of chemo/stem cell transplant will start next friday. She did not make chemo counts today , her platelets were still little low. But ANC and hemoglobin are nicely recovering.
I kind of like this nice long break. :) Regina is doing awesome. She enjoys school, she had couple of nice play dates with her classmate ( cross the street neighbor). She eats and drinks well.
After this upcoming last round of chemo we are done!!! DONE. I am speechless. I thought this day never come. But I am scared also. I already mentioned before that MRI did not pick up any active cancer cells in her brain. But it does not mean that danger is over. Doctors think that whatever mass is left in her brain is not cancer, and they think it is necrosis. i asked about possible surgery to remove some of it. Dr Dhall told me that it is not possible to remove anything, since necrosis is all spread our . IF it was in one spot , then yeah... Also, dr Dhall mentioned "possibility" to radiate Reginas brain more... BUT only HUGE concern here is location. Since radiation is needed in left side of brain, it is not best idea to do so. It can damage her "intelligence" quite a bit. AND radiation is needed IN CASE there is something hiding in that dead mass... And it will help to kill those left cells ( INCASE there is something).
But that is only talk. Dr Dhall also wants to neuro testing.( psychological) evaluation, to see where REgina stands academically... .. Whew...
Lets just hope that Reginas next round of Chemo will be her LAST round EVER!!!
Tuesday, January 8
Our St Jude friend Madelyn is loosing battle with Neuroblastoma. She only has few days left and I am heartbroken and devastated over this.
uesday January 8, 2008 10:45pm CST
"at this time we kindly ask that visits be limited to the immediate family only as we are sharing our last and final days with our Princess! Her time awake is very little and we are cherishing every part of that as a family. Thank you!"
I also wanted to say that last night, while Maddie was up, she had a sweet time reminiscing about special times with Tyler. She didn't realize Tyler was standing behind her listening, but she gave him her little sweet smile when she realized he was there. I am so happy for this for him. Also, Brandi said that she is sorry she hasnt gotten to update as she would like but will as soon as she can.
Monday, January 7
Kids are finally back in School . Regina is doing awesome. Her appetite is back and bigger than ever. She is full of energy, and shows no signs of weakness.
We are going to meet Dr Dhall on Wednesday to discuss Reginas treatment plan.
Me, other hand... i am just tired of sitting around and worring. I know I will be worrying rest of Reginas life about every step she takes, every time she gets sick, every time, she is too sleepy,.etc. I wish i had some super powers to see future..
Gabriel has been asking me some weird questions and giving me some even weirder commands...
His number one wish is--- "I want Reginas cancer be over by June, because I want to have my Birthday party in Scooters jungle".. He keeps asking every day IF Reginas cancer will be "over" by June... And he makes sure he Reminds me that IT IS very important that his birthday will be in SCOOTERS JUNGLE...( IF you remember , then Regina had her second brain surgery on Gabriels sixth Birthday, ( june 22nd), And gabriel still Remembers that his birthday got canceled and he could not play with his friends and Sc. Gabriel really has lots of patience to deal with Regina and her issues.
Friday, January 4
We had to go to CHLA today. Dr Dhall wanted to make sure Reginas platelet counts were stable .. But they were not. They were below 50 000 and Dr Dhall wanted REgina to have transfusion,so Regina can survive this upcoming weekend. But since there were to many children needing platelets, Regina was not their First priority, and we had to wait 3 hours to get those platelets. :( Finally we got them and weekend can start:)
We are going to Dr Dhall on wednesday, and after that we will start Reginas Last ( hopefully) round of chemo/stem cell transplant. Regina is doing better now,and is slowly recovering from her last stem cell transplant.