Wednesday, July 29
Oh guys, I wish I have some good news for you. Actually, right now I have no Idea what kind of news I have. Not good, not bad, not stable..
Sadly, REgina is not doing that well. Her physical condition has worsened within past few days. She is not able to take even 2 steps without any help. She started tilting her head to the right, and oh,.. and she started drooling. She is also taking her 3-4 hour naps during day and seems like her speech is harder to understand also.
I emailed Dr. Dhall and let him know what is going on. We are starting to give Regina MORE steroids doubling up what she was taking before ( now 2 MG per day). Also Dr. Dhall called Radiology dept. and Regina will have an MRI sometimes next week. I don't know when or what time, but I will let you know when I find out.
Right now I am little scared. Could be many things, but could be gamma knife side effects and if that is it, then we have to do everything we can to manage those side effects.
Other than that- Regina is still eating a lot, drinking tons of milk, watching tv and plays LOT OF COMPUTER:) I got her Hannah montana 3 and high school musical 3 cds. She loves music. Her new favorites are Katy Perry, Pink, Taylor Swift, and 3OH!3.
She smiles a lot and gives us hugs. The other day in CHOC she surprised me . Her Nurse asked what are Reginas plans for a day, and Regina told her that SHE IS GOING TO GIVE PEOPLE HUGS:) ANd she did give few hugs:) SHe never said anything like that before. . Sadly that nurse will move to ATLANTA ( yes , to the place where those "entertaining" Housewives are from ).
Ok. So please, send your best thoughts , vibes, prayers to REginas way :)
Saturday, July 25
I have been reminded by few of you that I have not uploaded my beautiful blog. I do it now. Better late than never.
Nick and Gabriel are back from CHina and Regina is really happy that they are home :) Missed my guys :)
Reginas latest MRI showed no signs of tumor growth. BUT.. BUT BUT BUT> Her ride side is really weak. She can't walk without support at all. She was on steroids but they did nothing for her. All she did was eat and eat and eat. . We are starting Physical therapy on 30th of july to regain some strength and make her right leg and hand work.:)
She is doing lot of coloring, watching lots and lots of TV, and plays webkinz. SHE also eats one can of PRINGLES sour cream and onion potato chips per day ( because of steroids), so guys, if you wanna make her happy, always take pringles chips with you when you come over.
another her fave food is fried potatoes .NOT french fries, more like hash brown style cooked withbacon and with little oil only.
We are still going to choc 3 times a week for labs mostly. Sadly REginas counts have not recovered yet, and we have not been able to start chemo. Sad. :(. We were supposed to start 2 weeks ago, but platelets are not stable enough to do so. So we check her platelets and if in 2 weeks they are still not 75 000 ON THEIR OWN, then we have to think twice before starting chemo. Not happy about it. Dr.'s think that reginas tumors are chemo sensitive and prevent tumors from growing, so if we stop chemo.. who knows what might happen . Hope that nothing happens and they just stay stable for a very very very very long time :).;
Also, Regina has double broviac line in. We were talking to Dr. Dhall, and if REginas counts remain stable and platelets are high enough, we will remove it, and place port, which is not outerior line. In this case REgina could swim ( good for her physical Therapy), take long baths and does not have to worry about 2 hanging "hoses" on her chest:).
That is about it.. Gabriel stars Crown Valley YMCA in august, so at least he has something to do during daytime.
Once again, I want to thank you all of you for being so patient with us.
Wednesday, July 15
I hope you all are having a great summer so far :) Regina and I are doing alright. No major drama going on. Regina is feeling great and eating lot.
Doing lot of coloring and word searches with her left hand. :)
We spoke to Dr. Dhall last week. He believes that Reginas tumors are chemo sensitive and to keep them from growing we have to do chemo. We are due another round RIGHT NOW, but reginas blood counts have still not recovered. Platelets are issue this time. She had 6 transfusions since June 12th. When her platelets stay to stable 80 000 or more, then we can start chemo.
This last round was LOWEST DOSE OF CHEMO ever, but it takes forever for her body to recover. Her quality of life is not affected by it. She feels energetic, happy, talkative :)
NOW.. BRRRRR. Her Right side is still not doing good. Most likely it is because of her tumors close to brain stem area. We hope to start physical therapy soon because I see how hard REgina struggles to take steps . She stumbles a lot with her right leg. RIGH LEG IS VERY VERY WEAK. BUT she does not complain about it. SHE just deals with it.
Me on other hand- AHHH I COMPLAIN ALL THE TIME. I am just tired tired tired of going to hospitals , appointments, giving her medications . I LOVE taking care of her, but it is hard.
I want Regina to have playdates and hang with friends .. .BUT I don't trust to leave her with other kids who are more active . She may fall , bump her head, have a seizure, .. she may have gazillion things and if something happens I will feel quilty for not being there for her..
I also can't take her to beach because she just does'nt want to go. PARK- 5 minutes of swinging and then she wants to go home. SHopping-- visit all kids stores and again SHE WANTS TO GO HOME... WAHAHAAAAA.
Anyway. SHE IS DOING GOOD concidering her situation:)
Monday, July 6
Reginas MRI showed no progression of disease:) STABLE:)
NOW we have to figure out how to deal with all the surgery, radiation , gamma knife side effects.
We are going to CHLA On wednesday to See Dr Dhall, and also, REgina has audiology appointment . SHE needs some sort of hearing aids for sure.
SHe is eating great, feels great and looks great for a change :) IF you ask HOW I DO IT?? I don't know how I do it. I just do all I can , my friends are doing what is in their power and doctors are doing what they can :)
Gabe and Nick are doing ok in CHINA. ALL I HEAR.. IT IS TOO HOT IN THERE. TOO HOT, TOO HOT... heheh ;)
Wednesday, July 1
+++ Quick REminder. Reginas MRI on July 2nd, 5.30 PM in CHLA. I am nervous. More than ever before. This time around I have a very bad feeling. But again, most likely I am overthinking. After all REgina is not vomiting, not having headaches.
BUT, BUT, BUT-- she is favoring her left hand. STILL. AND eventhough she is on steroids, her right side is loosing its strenght. Today ( 1st of july) , was her worst day in balance wise. SHE IS IN GREAT SPIRITS :) THRIVING to do things, THRIVING TO LIVE AND SURVIVE, but her brain is not giving her a break .
ANyway.. If her MRI tomorrow is stable, then I am going to take her to my chiropractor to get her adjusted. It does not hurt to try. Her posture has been getting worse, and sometimes when I look at her sitting MY back starts to hurt. SO I am hoping there are some pinches nerves. ALSO her RIGHT leg and right hand are cooler than her left side. Very weird. Circulation problems?
I KNOW , I should be completely freeked out. BUT I am not. Seriously.. I am not. I am just worried. I know what it takes to make me go completely coocoooo... I know .... and even thinking about it makes me cry. So I try not to think about it...
AHH. Regina is such a sweatheart :) SInce nick and Gabe are in China, we have lot of Girl time. OUR house is quiet . TOO quiet. Not used to this silence... My favorite time is bedtime- getting REgina ready for bed. We have some deep conversations during this time... And today was no different.. REgina told me - Mommy, I dream about Long blond hair, and princess dresses and growing old. I dream about wearing a beautiful golden crown. I LOOK BEAUTIFUL. .... She pauses for a second and says. MOMMY< YOu are real queen. and daddy is king and Gabriel is Prince. ..... And she pauses... and smiles and smiles and tells me she loves and gives me biggest hug ever.
And you know what is my only thought that goes through my mind-- WHAT IF THIS IS HER LAST HUG? HEr last words...
I KNOW, I should not be thinking about it. But sometimes when I look at her I see sadness in her eyes. actually.. I see it often... ANd I wish it wasn't there. I wish I could help her more, . But saddly I can only support her and be there for her. :)
I really do love her very much.