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:)


Patty said...

I just wish that miracle would happen soon. Poor little thing. She just needs more energy to be able to do some of the things she likes to do. If only all her friends could some how send her a little energy that she could use, I'm sure that would help.

Still keeping her in my thoughts and prayers. Hang in there Mommy.

Julee said...

What a beautiful picture. We were so happy you came to Aiden's birthday. It meant so much to us.

Katrina said...

Thanks for update. I hope the blood counts shape up soon. I don't think anyone can really understand how difficult this all is for you. After all, YOU are a person, too. Your feelings of frustration and exasperation are perfectly legitimate and you are wise to acknowledge them. Feeling "bad" about complaining serves no purpose. I am glad that you use this forum to vent and be honest. It will keep you strong!!

Much love, Katrina