Saturday, September 27
TOday was a great day. We went to Riley' Farm. Well, it is fall, but sadly we do not feel like it is fall. IT is HOT and humid. So, we drowe 81 miles to Oak Glen to find it... Weather there was even hotter. BUT nature was beautiful :) Regina and Gabriel had fun picking apples. And overall it was great quality time spent together as a family :) For a minute I even forgot about all our problems...
Tomorrow we have plans to go Tattoo Expo... Yeah, 4 of us will get matching tattoos...lol And in afternoon we got Tickets to Playhouse Disney Live show In Long Beach.
BTW, Regina had doctors visit. Just 9 year well check.. She is doing great. She is on 25th procentile on her weight and Height. So she is not doing that bad:) She up do date with her vaccinations. Looks and feels great :):):)
Anyway, I will add ALL of our todays pictures into our Family album.
Wednesday, September 24
Regina had a gread Birthday party. Dress up, interactive story, cake , pizza , friends.. It was very cute party:)
And then - today was CHLA and Chemo, and Dr. Dhall. Regina did pretty well with her chemo.
We added new Chemo drug, Irinotecan into her Chemo mix . She never had this combination before, so we are not sure how well these 3 drgus work together - Temodar, Irinotecan and Avastin. Of course we are hoping for the best results ever, but we have to be realistic here.
Reginas platelets dropped a lot since 2 weeks ago. Form 110 000 to 73 000. It is a drastic drop. Also, Regina is little sick, which contributed to her low platelet count. IF her platelets fall below 70 000 by next week, then we have to reduce temodar chemo ( not happy about it, but we have to ). So , if you are asking where we are now, then know that I do not know. Just live day at a time, and hope tomorrow is another wonderful day , filled with stress and unsertanty what happens day after tomorrow... ugh.. hate it.
Of course we are not happy what Dr. Dhall had to tell us about "future", but we have to cope with it. SO , DO NOT ASK...
Friday, September 19
Wednesday, September 17
WOHOOOO!!! My girl is turning 9 on friday. I mentioned this before, but I talk about it anyway. Regina was born on 09/19/99 and now she is turning 9... Lots of nines... i think it is very cool.
We are having party her on 21st, and it will be in Wowzville Fairyland. www.wowzville.com and if you click rooms, there is one of the rooms Fairyland. It is really beautiful place, and Regina can't wait till Sunday :):):)
My favorite part about it is- I DO NOT HAVE TO CLEAN UP AFTER 14 kids :):):) and I do not have to cook, and worry that kids get hurt. Everything is taken care off by Wowzville wonderful staff :) .
And of course I love buying stuff for goody bags. It is so much fun :):)
Tuesday, September 16
Our worst fears have come true.
MRS was done. Couple of spots were way to small to determine WHAT IS IT. But one spot, the one that is 1, 2 cm big, showed that it is tumor and it is in a mix with scar tissue.
What's now you ask?
Regina is already taking oral chemo -60 mg Temodar .
Then in every 2 weeks she is on Avastin.
AND we are adding third chemo drug into Reginas drug coctail... IRINOTECAN. It will be given her through IV , in every 2 weeks after her Avastin dose.
I am not sure what side effects will be, since she has not taken Avastin /Irinotecan mix before. But i am guessing some digestive issues, and tiredness, and counts falling faster...
But till you wait, then check out Reginas story on CHLA website. Some of you have already read it...
And few of you have asked what is MRS....
MR Spectroscopy provides information about the presence and amount of hydrogen protons attached to different cerebral molecular compounds. These protons possess intrinsic differences in resonant frequencies (or chemical shift) due to their differing molecular environment. A spectrum can be generated that corresponds to a scale of resonant frequencies vs amplitude (concentration). Molecular compounds identified within cerebral tissue include N-acetyl-aspartate (NAA, a neuronal marker), choline (a cell membrane marker), creatinine and phosphocreatinine (energy metabolites), and lactate (a by-product of cerebral metabolism).
MR spectroscopy is useful in characterization of brain tumors. Compared to more benign tumors, malignant tumors have an increased rate of membrane turnover (increased level of choline) and a decreased concentration of neurons (decreased NAA). Spectroscopy has had some success in the pre-operative differentiation of various tumor types. More importantly, spectroscopy allows for the non-invasive monitoring of the response of residual tumor to therapy. Finally, spectroscopy can be utilized to differentiate tumor recurrence from tissue necrosis.
Monday, September 15
Hi guys. Keep your everything crossed for successful MRS. Lets hope that this MRS has all the answers to our questions.
For me personally, it has been very intense few days.
Regina is doing great right now, and lets hope that whatever that other MRI showed was just an error... and those 3 stupid spots have disappeared ... ... I do not know when I will know about results, but when I find out I PROMISE, I WILL WRITE A POST ABOUT IT!!!!!
Friday, September 12
It has been pretty good "rest of the week". She did great in School, she took her nightly chemo without any side effects... So, it has been great week. Also, Reginas MRI got pushed into monday. Doctor, who has to be there while REgina is getting MRS, is not in CHLA on sunda. SO Reginas MRS is on Monday late afternoon. 5.30.
Other than that ther's nothing new. .. Oh, yeah there is...lol.. I colored my hair purple. Few of you saw me today with my bright new hairdo and smile in your face was priceless...lol .. But my hair grows so fast, and it is so cool to cut and color and , color even more... Anyway, if you get a moment , peek into my TAN FAMILY VINTAGE PICTURES album in caliwitch...
If you can't open that link, then just go to . www.caliwitch.smugmug.com and click into that particular album.... There are few of my weird haircuts, styles, colors... somewhere...
Threw away bunch of stuff I did not feel like throwing away, but I HAD TO. I am dicluttering my house/life... OR, I am just making room for new junk....
Wednesday, September 10
Then we got to CHLA and surprise, surprise… there was no parking in CHLA. There are 2 parking lots and valley parking. BUT LOTS were FULL. At that point I rolled down windows and asked- WHAT NOW, my daughter has chemo and MRS… what the heck do you think I should do?? Parking attendant just told me – I don’t know… Find parking. I wanted to get out of my fucking car and shake her till she apologized to me for telling me this… Then after few more circles and few more PARKING LOT full signs.. I pulled next to hospital security dude..( very handsome African American dude BTW).. And I started explaining him that I HAVE TO GET INTO CHLA RIGHT NOW. I was not even yelling at him, when I started telling him my daughter has chemo and MRS I just started crying and asked him—You tell me, what I have to do? We are patients and we can’t get in. It is never been this crazy before? What is going on. For my surprise he started apologizing to me. He told me that he understand how frustrating it is to me, and he asked me to pull aside and wait for few minutes till he checks parking garage… Few minutes later he told me to make another circle around and he will open parking garage for me.. I started crying even more—thanking him like I never thanked anyone before… and crying like it was my last day on earth….
TO be honest, everything is just building up inside.. Today when we got back all nurses were like- DIANA AND REGINA, YOU ARE BACK…. Child life workers were happy to see us, few other people……. And I was glad to see them tooo…But then questions started HOW is
Luckily we were in CHLA and it is OK to cry in hemo/onc floor. Then we found out that 2 more of our good friends have relapsed- both with Medulloblastomas… And this was their second time … I got even madder then. WHY??? What have these kids done to this world? Truth to be told- real sufferers are us, PARENTS. Feels like every one of our “sins” has to be punished in a very manic way… Cancer sucks… and I have only one questions to those who have lived with it for 20-30-40 years… Do you ever get over fear that IT might come back? Or you just forget about it and live happily ever after?
ANYWAY. We are in CHLA now,
MRS is scheduled to Sunday 1 PM. Till then we just have to stay sane…
Monday, September 8
Sadly my good camera is out. OUT OUT OUT. In Estonia I was taking pics with it and suddenly there was crash , boom bang.... and flash was out... So hopefully Best Buy dudes take good care of it, and I have it back by Reginas Birtdhay... til then I have to take pics with crappy , slow cheep Kodak camera.. ... Srry kodak fans.
But here are few pics I took in Venice beach, and at home.
Friday, September 5
.. .but I still can't tell you how bad things really are. The bigger spot that you can see was present last time, and has grown only 2 mm , which is good, since it is slow growing. those 2 tiny ones were not present in May 20th 2008, and are also slow growing. So this is good. At least it is not aggressive .
We have to go back on Wednesday for more scans ( MRspectroscopy of this tumor).
RI Spectroscopy (MRS)
MRI Spectroscopy (MRS) is a special technique used for characterization of the biochemistry of tumors, infarcts, and other pathology.
MRS is used to obtain information about chemical composition. MRS measurements are commonly made on chemical samples and tissues. In animals and humans a number of chemical concentrations can be obtained over a period of time. From this information, rates of change in specific metabolites can be determined.
MRS is useful for demonstrating aspects of physiology such as tumor aggressiveness and anaerobic metabolism.( FROM WWW)
Anyway, we still have slight hope that this is NOT tumor growing back, but very likely it is. We already discussed what are our options IF it is tumor... and this time there are not much available.
Of course I do have one good news. After we got home from CHLA today, i got a phone call from St Jude office here in Orange county. They gave us tickets to go to see WALKING WITH DINOSAURS in opening night in Staples center on September 25th 7PM. I am so exited. PS. Funny thing is I was just talking with my good friend about showing Reginas scans to our St Jude doctor. Maybe it is a sign.......:)
Wednesday, September 3
I know you all have been patiently waiting Reginas MRI update.
All I can say is we have to go to CHLA on friday to discuss Reginas MRI. Dr. Dhall emailed me and told us that There are two or three small nodules that are more prominent this time, and he could not reach the person who did spectroscopy to see if those areas are consistent with tumor progression or scarring still.
We are hoping it is scarring... but to think back about Reginas headaches in Estonia, and her head hurting during take offs and landings.... I do not know what to think right now... It will be tough couple of days. Please hope for the best .
Tuesday, September 2
I am nervous and stressed. Regina has been doing great past few days and I should feel confident that everything will be ok, but I can't find my peace.
ALSO, today was first day of school. Gabriel is now second grader and Regina is third grader!!!! AND mommy has been filling out job applications....