The hardest things

Obviously when someone has cancer lots of things are hard. Being the mother of a child with cancer, well that's hard too. Being told she had cancer was hard, but I handled it. Not being able to be with both of your kids. Seeing your other kid suffer because all she wants is some mommy time. Spending every holiday inpatient and seeing everyone else go home but you guys. Seeing her under from anesthesia that was one of the harder moments.

~First time she was ever put under~

 You start to get used to your new life, but the fear never goes away. Talking about it never gets easier. Even though I have told her story a 100 times, I still have a hard time telling it to people who have yet to hear it. Some days are just like any other day and then another day will hit you out of the blue. When we were first told she wasn't in remission was one of those very hard moments. I remember it like it was yesterday. At least with the original diagnosis I wasn't as shocked to get the news. I had time to process. But with getting the news of not being in remission well this hit me like a freight train. I remember when they first started discussing Bella's treatment. They try to keep things so upbeat as possible and I just thought everything would go off without a hitch, never would she get an infection, never have more than one port, never not go into remission like 98% of other kids. Boy have I been wrong. Though I partially blame this on the doctors and nurses. They should have explained better. They should have told us she wouldn't walk for the whole induction phase, that we would be inpatient for 26 days for a positive blood culture that I didn't even know was possible. That kids de-access themselves by accidentally ripping out the needle in their port. They should have just given me all the what ifs. I know that many moms can't handle all that info, but I can and I want it. It helps me process and prepare for what could come. The only thing they did tell us for sure is the chipmunk cheeks that she would develop from the steroids and that her hair would all fall out right away. She did get those chipmunk cheeks but it took a lot longer for her hair to fall out.

~Look at those cheeks~

Finally 4 months later we have shaved off the remaining strands. I thought that this was gonna be a lot harder than it was. When we cut her hair into a bob during induction, I had to leave the room I was so upset. This time I shaved it off myself. We had an awesome photographer there to take photos that we will talk about later when they are complete. Even though she looks completely different she is still the most beautiful loving little girl that I have met. I am so thankful that God gave me her. She makes my day 100 times brighter.

~Finishing up her shave~

Starting Tuesday of last week we had a scheduled inpatient stay. Even though her ANC wasn't quite what they wanted it to be we still decided to go on with treatment. We didn't want to postpone the bone marrow again nor did we want to put her under more than once in a week. 7am we arrived and checked in. They accessed her and took us downstairs for her bone marrow and lumbar puncture. Even though they were right on time, Bella was starving. She cried for a good 20 minutes demanding that we get her a peanut butter and jelly sandwich. Finally we took her in the room and the anesthesiologist gave her some Propofol to put her to sleep. 20 minutes later and after a run to the cafeteria for pb&j she is out of the procedure. We make it back to our room short time later and wait for her 24 hour chemo to start. Unfortunately we didn't get started till 4:10pm. Since this was our first time with this chemo I didn't know what to expect, except for what other moms had told me. Next time I will be prepared and make sure they are on top of checking urine levels so that we can begin in a timely manner. Finally they bring in a large bag, not as large as it could be as it depends on weight and she is pretty tiny, but its large and its neon yellow and it hangs on the IV pole and it makes her pee neon yellow.

~Her big bag of Chemo~

It runs over 24 hours. During these 24 hours we have to stay on the floor since she has chemo running. Halloween also fell into these 24 hours. Fortunately Bella was still able to participate in the trick or treat event since our nurse was available to walk up with us. They build cardboard houses that the kids trick or treat at. Very cute idea, if only Bella and Gabbi were in the mood to play. They only lasted a few minutes before they both were having breakdowns. Apparently inside trick or treating was not their idea of fun.We also had a few visitors that stopped by the room and dropped off goodie bags. 

~Princess Bella~

When the 24 hours is over, they draw labs and check the level of the chemo in her blood. It has to be below a certain level or they start the rescue drug right away. Her level was good so no rescue drug yet. Then they re-draw labs at hour 42 and then start the rescue drug called Leucovorin. They then re-draw at 48 and do another round of the rescue drug. Her levels were great. The doc could have sent us home Thursday night, but since this was our first time he wanted to get in another dose of the rescue drug before we left as it can help with the mucositis that this chemo has a habit of causing. In order to reduce these for Bella, I set-up my phone to remind me every 2 hours to brush and use biotene. We also made a deal with her. For every lap we walked around the unit and pulled her in her wagon, she had to take a drink. So far this has worked in our favor. No sores as of yet, but it is still early. I can't help sores that appear anywhere else in her digestive tract but I will do everything in my power to reduce the mouth sores. I would do anything to stop anything from causing her pain. 

~

~One of our many laps~

8:30am the doc comes in and tells us we can go home. No results as of yet but he is gonna call and see if they have arrived. 9:30am we are in the playroom. My mind has already gone to the end of the day. The clinic closes at 1:30 and they fax the information there. There is no way I will be able to make it the whole weekend without knowing. He must have been in my brain. Not even a minute after all of these thoughts were going on in my head I see him. He comes in and says I have been looking all over for you. I want to give you a hug. Results are back and they are negative. No disease found. WOO HOO. He leaves and I immediately embrace Bella and call Leo (He was down stairs packing the car.) Remission!!! We finally have remission. After 4 months of fighting this battle, remission has been achieved!!

~Woo Hoo, I 'm in remission~

Back to the clinic on tuesday for a counts check and to start her on Pentamidine that replaces her weekend doses of bactrim. A antibiotic that is given to all immunosuppressed people to stop them from getting PCP. A certain type of Pneumonia.  Then we are back inpatient the following tuesday for round 2 of 4 of 24 hour high dose methotrexate.

~In their new wagon from Cody's Wheels of Hope~

Since this month is about being thankful, we want to say how thankful Leo and I are to have my mom. She is always here when we need her, since the moment we had Bella. She is always able to keep Gabbi overnight when we are inpatient and we would be lost without her. Thanks Mom for everything you do for us. We love you.

~Mania & Baby Bella~

  "Now faith is confidence in what we hope for and assurance about what we do not see." ~Hebrews 11:1