Friday, December 28, 2012

Christmas

I am so thankful that Bella is doing well with this phase. She has flown through it with flying colors. Always having wonderful counts and an attitude of some sort. Sometimes good, sometimes sassy and sometimes bad. I'm just glad she has one to get through this difficult journey that we are on. She just finished up her last scheduled inpatient stay, so if we end up back there it will be for a fever or a virus. This stay was luckily very uneventful. Our friend Gabby (same age & diagnosis as Bella) were inpatient with us, so it was nice for the girls to be able to play and walk the halls together. We also had another visitor, Brianne who is 7 and also has the same diagnosis as Bella. She gave Bella the cutest hat for Christmas. On top of the methotrexate, Bella also got her monthly dose of Ivig and pentamidine. Because of those transfusions we got discharged a little late and didn't make it home till around 6pm. 

~Smelling the flowers~

The weekend was uneventful and that's always a good thing these days. Monday Bella had a clinic visit and an ECHO. The ECHO is to check her heart to make sure it is all in perfect working order. The chemo called doxorubicin can damage the heart so they need a baseline before giving this drug to her. Counts were a little low with ANC only at 650, so they wanted us to come back in Friday before the holiday weekend.

~Checking in for her ECHO~

On Friday her ANC was up to 950. Yay! Just in time for Christmas. All weekend I read about other cancer kids with fevers and ending up inpatient on Christmas. We were so lucky that we had an uneventful holiday and we weren't even on fever watch.

~Clinic Visit~
This year Bella and Gabbi scored big. On Christmas Eve, they received big present #1. The train table. Story behind this is whenever we go to the pediatricians office all Bella wants to do is play with the train table. For obvious reasons (GERMS) I never let her play with it anymore. So we got her one from home. Needless to say, they love it!

~Setting up the train table~

Christmas Day was great, if you don't factor in that Bella didn't even fall asleep until 2:30 am. Not sure why that was. We even gave her some sleeping medicine that obviously didn't help.  I'm almost positive it has the opposite affect on her. By 11 she was up opening presents. She was so into Christmas this year, it was fun for the whole family. I can't wait until next year to do Elf on the Shelf :)

~The Christmas Tree~

~She loves Santa~

~Enjoying their santa hats from Boxes of Love~

They also received their 2nd big present, a dollhouse handmade by Mania (grandma)! Last year before Bella was diagnosed we bought this dollhouse hoping to give it to her for her 3rd birthday, but that project was put on the back burner due to her diagnosis, so she received it for Christmas instead.

~The finished product~

~Loves her doll house~
~Gabbi  & Bella enjoying their house~
 Bella's next appointment is December 31st for counts. If they are good, then we start her last round of chemo in the front line treatment (YAY). I cannot wait to start maintenance, its bound to be better than the front line treatment was to us. But yet I am so afraid of this next phase. It's supposed to be almost as bad as induction and you all know how induction was for us. It only consisted of 36 days inpatient with 2 central line infections, a fisher and very low counts. It doesn't help that I have been following a little boy's story who has the same diagnosis as Bella who was in the second half of delayed intensification, got a cold that turned into pneumonia that put him in the ICU where he is to this day and they don't know if he will ever make it out. To say I'm scared to death is lying. I'm scared of Bella's death. I also know in order to get her better we must go through it to get over it. It doesn't help that this year Leo's Christmas party is in Vegas. On one hand I cannot freaking wait to go!!! I need a vacation sooooo bad. But then on the other I am freaking out inside. I have only ever left Bella for 1 night and that was before she was diagnosed. She will be 2 weeks into this phase and my mind will not stop with the what ifs. My mom will be watching the girls and I know everything will be fine. Vegas is a short flight away with many, many flights in and out a day. But I can't stop myself from being a nervous wreck. I just hope I can enjoy myself while I'm there. January 12 here we come!

~Loving the outside~

Sunday we have another photo shoot. This time with The Gold Hope Project. I feel that documenting this journey is so important as you never know when your time will be cut short and I want to have all the memories. We also heard from Make-a-Wish and we will be meeting with them on January 5th. I'm pretty sure Bella had decided on Mickey Mouse's house (Disney land or world.) How she learned to refer to it this way is beyond me. I just think kids are programmed to know this info :) I hope everyone had a wonderful Christmas and we are wishing you all a Happy New Years. May this year be 1000 times better than this year.

~Merry Christmas PJ's~
We will be staying in and ringing in the new year at home with the babes. If Bella has no delays (hahahaha ha yeah right) we will be beginning maintenance sometime in the beginning of March. But knowing Bella I'm planning on April. We will see everyone then as we will be doing NOTHING while she is in this phase. With the flu and colds running rampant we can't risk Bella getting sick so we will be recluses for a little while. So who wants to volunteer to go to the grocery store for me?!? And just think when we come out of hibernation summer will almost be upon us!

~Loving the swing~

"I keep my eyes always on the LORD. With him at my right hand, I will not be shaken. ~Psalm 16:8"

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