pictures from today

I have a feeling the cats are not getting enough attention.

cycle 5 done.

All done with cycle 5.

Her mediport was acting up and she had to have an IV put in for the last round today. It went so smoothly. Those nurses put that IV in within a few minutes (thank god). We are letting it heal for a bit as per the surgeon that put the mediport in. Hopefully we wont need surgery to fix it.

Her shots start tomorrow we are having a nurse come by to help us do it. Not looking forward to that at all. But she is in a great mood today and looking forward to auntie gigi's party tomorrow.

lesson learned.

Don't give her a biscuit first thing in the morning.

first time seeing daddy play music

happy 9 months

We had a great time yesterday, we went out to the Mall. Her 1st Mall visit ever. She was so excited, feet kicking, yelling at people walking by and dancing to the music. We had alot of fun with her, she even picked out the cutest dress w/ a skull on it. She actually pointed to it, now we know she is my daughter. We sent Grandpa Kulick and Uncle Mark some of the action to their iphones.

She starts cycle 5 this week and I get to learn about the shots some more. Not looking forward to that. Grandparents' Sause might go with Greg for a day dependng on how they feel. (& I get sometime off yay!)

She absolutely loves her play pen, we set it up for her in the living room. She spent an hour in it this morning, her lil santuary. The cats love it too, she cant wing her toys at them.

news.

We got some news, from the scan she took when 1st diagnosed compared to the one now, its a great improvement. She still has a mass on her adrenal gland but everything else is gone. The doc is extremely excited on how well her health, development and how she is dealing w/ the treatments.Its way past what he predicted. She is now scheduled to finish all 8 cycles then more scans, then surgery.

Cycle 5 starts next week since her counts are low. After the next cycle i will have to give her a shot so her counts are not low anymore and we go on schedule, the doc doesn't want to wait anymore. Her health is fine he just doens't want to hold things up anymore.

Good news..but not what i wanted to hear. "sorry Regina she doesn't have cancer it was a mistake" is what i wanted to hear. Thank you all for the comments and support.

Big Day!

tomorrow is when we find out some news, and maybe a start of cycle 5 but that depends on her counts. If there is the start of cycle 5, Greg wont be with us, since he has the flu. But will post soon, hopefully some great news too!

as you can see, she's fine.

hectic day

Catherine and I went to the store today and on the ride home we got into a fender bender. Everyone is fine, she was checked out completely and is great. Some idiot decided where he had to go was more important than anyone else and blew through a red light. Thank god I drive like an old woman when she is in the car with me so I was not going fast and no real damage to our car, that we know of anyway. I have to thank the West Babylon, Babylon Fire and Rescue for their quick response we were in the ambulance with in minutes of the accident. Also the Suffolk cops how quick they were to get there. She was smiling at all of them and got a really cute teddy bear to play with. Catherine and I will not be using the car for a while and staying in for a few days. I am still shaken up. No matter how cautious you are there is always a selfish idiot on the road.


No word yet on the scan from Friday. It went so smoothly and quickly. The doc must have been sooo busy we didn't see him at all. But I'm sure if something was wrong he would have called us back in. Wednesday is when she goes for her cycle 5 depending on her counts, I'm sure we will find out then what is up with everything.

We are also very sadden by the news of her Soul Godfather's Father passing, so sorry Jon. Your family is in our hearts.


Hopefully next post will be more positive.

Injection today scan tomorrow

She did fantastic today with her injection, went very smoothly. Although having Uncle Mark there helped with distracting her. She is radioactive now, I am still waiting for the superhuman powers to start.  :)

She has her scan (MIBG) tomorrow at 1pm. We hope to get some results tomorrow regarding the scan. The doc said he's been speaking to the surgeon about when surgery might be. It all depends on her liver and what will be best for Catherine. So we will have more info either this week or maybe next week.

Camera is charging at the minute but we got a some great gifts from Aunt Ashley and her family thank you so much. Will post pics soon.

1st lap top

I can't tell if she likes "baby's 1st lap top"

a great weekend!

We had a great weekend. Greg came home a lil early on saturday and played with her before bedtime.

Sunday was brunch at Aunt Rainey's House to see Laura and her lil doll that is only a few months younger than catherine. She also got to meet alot of her other "cousins" and had a great time in the sun with family.

I got her some cool clothes to wear, being that she is greg's daughter this shirt is a perfect purchase. She has been feeling great lately, this week is her last scan then the start of cycle 5 of chemo. Today is a visit with her Nutritionist and her Physical Therapist.

greg said to make this vid public, enjoy.

Great News today!

We went through a long day but came home with good news. Most of the neroblastoma has turned to calcium deposits. Its what happens when this sort of cancer dies. There is a lil bit more in her abdomen and her liver is still slightly enlarged but we are sooo happy. After only 4 cycles of chemo the cancer is almost gone. They think maybe after she completes all 8 cycles she will have surgery. We will know more after the next scan and when they speak to the surgeons. They are just waiting for her liver to go down to do any kind of surgery. The surgery will be the removal of the calcium deposits (dead neroblastoma) Otherwise she was incredible today such a strong little girl we are so very happy with this news. Greg is dancing on the roof now hahah !!

He also examined her and she is in great health and her counts are great too

Scans tomorrow morning

Her CT scan is tomorrow at 920am. We are hoping we can get some information on what the tumor is doing tomorrow. I will try to update whatever info we get.

I'm trying to keep busy today to keep from thinking of negative things. I am hoping they will say she is free and clear, but that is only in my dreams.

talking to mommy

 

Easter

she had fun on Easter, met more family, touched Dougie's face, sat at the table with the big people, and had fun with the bubbles.

shes good but itchy

She's doing alot better today. The 1st day her needle / bandage was done wrong but they quickly fixed it the next day. She is still ichy though but feeling alot better. She has been very tired, this one kinda hit her hard on Thursday and she was in a bad mood cause of the itchyness. She has been sleeping great since they took our her needle from her mediport. Thanks so much to Uncle Alex and Grandparents Kulick for coming w/ us those two days, she enjoyed it alot it also helped Greg and me. Today we are getting some more fish and spending alot of time with Daddy.

Tomorrow Easter with Grandpartents Kulick and Uncles. With a quick stop at Aunt Mary's to wish Auntie Teddy a Happy Birthday!I can't wait to put her in her bunny ears. Will post pics later in the week.

Ok, shutting down this computer and enjoying the day w/ everyone.