Saturday, January 26, 2013

Hope. Faith. Awareness.

It's been a few weeks since I've updated. A lot has gone on but not much is up with Bella. She is in her 3rd week of Delayed Intensification. So far she is doing wonderful. Counts have been stellar except for the last week and she has been the happy, go lucky girl that I know and love minus a few steroid breakdowns.. I know that this can change in the blink of an eye the moment she gets a fever, but for now I will take it and pray for the best. 5 more weeks left of this phase that I am so scared of. 



Lets back up to the 1st week of January when we had The Gold Hope Project photo shoot. To say it was great is an understatement. It was AMAZING. The photographer, the place, the weather, the outfits, the props, the kids. I could seriously go on and on.




Since then Bella has had a few doctors appointments, all of them included chemo, and one was also a spinal tap that included a bone marrow biopsy and a bone marrow aspiration. To say she didn't wake up well is an understatement. It was a nightmare. She was thrashing around and just wanted to get up. The thing is in order for the chemo to spread to the brain in the spinal fluid, she must lay flat for a minimum of 30 minutes. Holding her down was rough, but the things we have to do as parents, especially a parent to a child with cancer. She was on steroids for a week and did relatively well except for a few breakdowns. All she wanted was to cuddle with mommy on the couch all day long. I usually would have no objection to this but that week I was home alone and someone had to take care of Gabbi too. Dividing my time between the two of them caused all the "roid rage" for miss Bella. This past weekend Leo and I enjoyed a trip away. While this was amazing and relaxing it was also very nerve racking. Not being with her, hearing her voice, seeing her smile everyday was heart wrenching. It made me think about all those parents that have had a child that lost their battle with cancer, who will never see and hear these things again. My mind just cannot fathom this. Whenever I try to even think about it I instantly tear up and pray like hell that I never have to experience this. Unfortunately 7 set of parents feel this anguish every single day. Childhood cancer is not rare!


 She did wonderful with Grandma and Grandpa. They had fun and played a bunch even though she was very tired from all the steroids.



3 more days left of the 2nd steroid pulse for this phase. Next week she has a break from chemo, but we still go in for counts check and then we will start again with another spinal tap and some more very rough chemo. With any luck though we will stay out of the hospital and only need a few transfusions. Last time she had these chemos she needed quite a few blood and platelet transfusions and got a few fevers that landed us in the hospital. 



When I am not taking Bella to appointments and taking care of the girls, my new full time job has become all about awareness. I am constantly looking for new ways to raise it. I told you the last few weeks have been busy just not necessarily for Bella specifically. We are selling shirts and giving away bracelets. Plus updating Bella's Facebook Page and sharing other little ones stories takes up a good deal of my time. Anything I can do to raise awareness for childhood cancer. I recently also guest blogged for my sister's blog and The Gold Hope Project (which will appear on Feb 8th.) Bella also was nominated as an honored hero for the Leukemia Lymphoma Society. Later this year there will be a Light the Night walk that we will participate in and raise money for, which I will talk more about later. 





"You intended to harm me, but God intended it ALL for good. He brought me to this position so I could save the lives of many people." Genesis 50:20

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