Control freak or cancer freak

Sometimes I feel like a broken record but I cannot stress this enough. I hate cancer. I do. I hate what it has done to me. Some days are great and other days are awful. And the bad days, they hit me out of the blue. I notice myself getting more angry over stupid, insignificant things. My poor husband and mom. I snap at them over the stupidest things. And when I'm doing it, I know how stupid it is but I can't stop myself. It's kind of like Bella. She needs to have some control in her life too. Like choosing what band aid or what shoes to wear.  All the control we once had in our lives have been ripped from us, so now we look for control in other things. Now I'm not saying I wasn't always a control freak before cuz I was, just not nearly as bad. But now it seems I HAVE to control things. Especially things with Bella. We have had so many miss communications lately with the doctors, I almost feel like I should start writing my own orders. The doctors and nurses may have a job to do but this our lives and we can't afford any mistakes. I take care of only Bella and the doctors have 100's of other patients, so I do try and control what is done to her and for her. I know all that I can know about Bella and her treatment and I continue to learn, because knowledge is power and I feel like as a parent I should know what is going on with her, what drugs she is taking and what side effects she can encounter. I don't like when they don't tell us everything. Even if it is a slim possibility, I still want to know so that I can watch for it. Like I said knowledge is power and if I have that then I can prevent her from having further issues.

~Cheesin~

This last week has been a great week for Bella. I think having her ANC finally above 500 for 2 weeks in a row has really done wonders for her. When we got to the hospital on Tuesday, she was actually excited to head upstairs for our inpatient stay. Though I think she was really worried I was gonna give away her princess puzzle and blanket along with all of the other stuff we were giving to the hospital.

~All the buddies raised from Bella's Scentsy fundraiser~

~$20 at the dollar store~

Originally our appointment was at 10am, but I received a call at 9:15 that they didn't have any beds upstairs so we would have to wait until they called us in. Finally we got the call to come in at 1:30. Got her counts checked and cleared for chemo. Headed upstairs after delivering all of the fundraiser toys. Unfortunately, they were not prepared for us and we were unable to start chemo until 11:45 pm. But this didn't stop Bella from taking full advantage of the playroom, cars, bikes and wagons all while being free from her IV line.

~Playroom time~

High dose methotrexate runs over 24 hours. While the chemo is running she has to stay on the 7th floor. During this time she played more than she has since diagnosis. We did so many laps on her new favorite bike and instead of me having to pull the wagon with her in it, she decided to pull the wagon around with her toys in it.

~Newest way to ride~

She also participated in a group play session where we created stepping stones. Luckily she is not afraid to get her hands dirty :) And then she also participated in a pamper yourself event sponsored by the Children's Cancer Network. She got to have her nails painted, make a scarecrow, stuff pumpkins and even make some thank you cards. Like I said, she was having a great week.

~Stepping Stone~

~Brianne, Bella, & Grace at the Pamper yourself event~

With the good also comes the bad. Not only has she been in a great mood, full of energy, she also has her very terrible 3 year old moments. Yes it is no longer called the terrible two's. It is now the terrible three's! Full of sassy attitude and NO's. My favorite. If she does not like something or doesn't get her way, she has an instant fit. Full of screaming, crying and sometimes hitting. I don't put up with hitting and she knows it but yet she still does it. At least once a day this happens. Its so frustrating. I know that this is a normal 3 year old behavior and I am very good at ignoring her. I think maybe it was those years of being a nanny? My husband on the other hand, not so much. He gives in to her every cry. No matter how much I tell him not to, he continues to do it. And she knows exactly how to work one over on him. Crying to him and loving on him. He is such a sucker! But who can blame her. Us women learn it somewhere and it might as well be now ;)

Donuts from the Nurse Practitioner at the clinic. Can you say spoiled?

Chemo finally finished a little after midnight on Thursday. After that finished they gave her some Pentamidine in place of Bactrim since Bactrim and high dose Methotrexate are not compatible. This drug helps prevent PCP(Pneumocystis carinii pneumonia) a rare type of Pneumonia that can strike any immune weakened person. Bactrim is normally taken twice on Fridays, Saturdays and Sundays. But some people cannot take this drug, either for allergic reactions, other drug interactions or since it can also cause low counts. If it is causing an issue they will switch them to another. Pentamidine is either given by IV or with a Nebulizer once monthly. Bella can only get it IV, because she is too young to use the Nebulizer. Unfortunately, we are unsure if Bella will be able to get this drug next month since there is a national shortage. All we can hope is that it will be resolved before then. Last year there was a shortage of Methotrexate (a type of chemo many cancer patients, including Bella receive). How these things happen are a mystery to me. And just the simple fact that the drugs we give our children to keep them alive and healthy can have a shortage is scary. We go back to the hospital next Tuesday for another lumbar puncture and some 24 hour chemo. 2 down, 2 to go. After this phase we have 1 more VERY difficult phase and then we begin maintenance. Let's do this!!!!

~Bella's 2011 Thanksgiving plate~

Happy Thanksgiving everyone! We are thankful for all of you. For all the prayers, donations, and presents. We are also thankful for all of Bella's nurses and doctors. Chemo and drugs. Good and bad times. Without any of these things, Bella would not be here today. 

" And let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful." ~Colossians 3:15 (NAS)