Bella was doing good after we got home from the hospital. It took a week but lately she has been doing much better eating and her energy levels have been doing good. Easter day she did fine then  Easter night Bella had a slight fever of 100.3 F, but it went down on its own that night, the next morning I took her to clinic to have her urine and blood checked to be on the safe side. Well this morning I got a call that she has to be admitted. She has bacteria in her blood and urine, gram positive in her blood and gram negative in her urine. So she is getting a couple different antibiotics to fight whatever it is that she has, as of right now they don't know, they just know that she has something growing bacteria wise in her blood. Looking at her she looks 100%, she is acting fine, but we have to be careful that an infection doesn't get out of control. She has asked to go home 100 times today, we went on a walk and we played outside in the court yard of the hospital. I don't think she gets why she is here.  Please say a prayer for her that the infection goes away, and they figure out what it is as fast as possible.

Time to start getting ready for our week in the hospital. Bella will starts Immune Therapy on Monday, but we have to be there Sunday, so lots of packing, cooking and washing. I would like to have the house spotless/ germless before we leave so I am not having to come home while she is there and clean. All the laundry has to be done and both kids have to be packed. Every mom knows getting all the laundry done in the house is pretty much NEVER GOING TO HAPPEN but I am sure going to try!
  I have so many mixed emotions about Bella starting treatment. She has done so well off of all the medicine and for the first time in almost a year she is really becoming a "normal" two year old. She is so full of life and love, it is amazing to watch her, everyday is a new adventure and she is so happy all the time. I am grateful she is even able to do immune therapy because there are some kids who just can't for medical reasons and it has a 20% increase survival rate. In the world of cancer and high risk Neuroblastoma, 20% is a big deal. I'm just not looking forward to Bella running fevers, being in pain, and all the other side effects that is part of this treatment. In the last month I've been praying for no side effects, and just positive outcomes with this medicine. With anything in the world of cancer, you hope for the best and prepare for worst, and have faith that God will carry her through it.

So Bella's had her Echo and EKG on Friday, we also signed the consent forms to start Immune Therapy on March 18th. I cried knowing she is going to get sick from the treatment, it is painful and she will be on a morphine drip the whole time we are in the hospital. I also know it is what is best for her so I have to walk with faith and know that the Lord will keep her wrapped tightly in his hands. T...uesday morning they will do a test of her bone marrow and replace her nephrostomy tube. We also decided to not fix the kidney issue until August when her treatment is finished. We don't want to get off schedule with the immune therapy.

On a brighter note: SHE HAS SOOOO MUCH ENERGY!!!! She is a little ham bone. I love her so much, she has me laughing all the time and knows how to do so. Also the hair is coming in dark, I can't believe it!

I am really horrible about updating this blog, and I am so sorry! So Bella finished radiation on  February 11th and we were lucky to have a the rest of the week out of the hospital, The funny thing about  radiation is that she enjoyed it. The staff made her feel comfortable and she really liked going there. She still asks me every morning if we can go see Minnie. Minnie is one of the nurses that she nicknamed and she just loved her.

We had a clinic appointment yesterday for the first time since Tuesday and it was great to have the week off and out of the hospital. Bella need a platelet transfusion for the first time in about two weeks but they said that was normal and the late side effects to radiation, Other than that everything was great. She is even growing eye lashes and has hair coming back. The big surprise is what color, and texture will it come back as. It is like waiting for Christmas.

We will be starting testing either Thursday and Friday or Tuesday and Wednesday to get her ready for our next phase in treatment called Immune Therapy. I am still waiting on the exact time and date. She will have to go through almost all of the same scans she had several weeks ago before radiation to make sure that none of the cancer has come back. We are very lucky that she did not start out with the cancer being in her bones and that it had not spread anywhere else, so the scans are more protocol than anything. It is still long days in dirty waiting rooms and this momma bear becomes a little crazy about germs.

I DID NOT REALIZE IT HAS BEEN THIS LONG SINCE I UPDATED!

We got home January 2nd, and has been a great few weeks! Bella is eating again and in full swing. Everyday she has more and more energy. As I type she is playing school with her big sister and they are both laughing. It is great to hear them both having fun together in our home.

  We have had to be at Shands in clinic 3 days a week for blood counts and she has needed platelet transfusions every other day for the last 3 weeks. The doctors all tell me this is normal and that platelets are the last to come in after a stem cell transplant. We will be starting radiation the week of the 28th, and it will go for 12 business days. Each day she will be put under anesthesia to make sure that she does move even an inch. There has been a lot of planning and scanning to get her ready for this. Yesterday we did another CT Scan and Nuclear- Med test, they actually put her under for the CT scan to find out the dosage that she will need and they did a mold of her body and placed 3 tattoo dots across her stomach where they will be radiating. It is better to do all that now then the day they want to start radiation.I met with the Dr. that is doing radiation on her and he was very pleased with the fact that there is not masses to deal with, and that they are basically just cleaning up the area for any cancerous cells that could have survived the stem cell transplant. He also said she will be one of the easiest patients he has had to deal with in a long time. That made me very happy. I also met with the surgeon and the urologist this week and the nephrostomy tube that goes to the kidney and the JP tube that goes to the urinoma will be staying in while she does radiation, originally they talked about removing the JP drain but after testing the fluid inside of it there is still urine. So it will stay for about 3 months after radiation until they can go in and hopefully fix the ureter. There is a possible chance that they will not be able to fix the ureter and they will have to remove the kidney but we will deal with that if and when the time comes. On a positive note the urinoma  is gone, but with radiation it could open back up and the JP tube, if removed would have to be placed back in. That would put her at risk of the urine being septic in her body and that would be a whole new set of disastrous problems that we do not want to deal with. So both drains stay for now. After radiation we will be doing 6 months of immune therapy, I should hopefully be getting more information on that soon.

GREAT NEWS!!! Bella's counts jumped last night and her ANC is 530! Anything over 500 is good and the chance of infections is down. She hasn't had a fever since last night around 8 pm and hopefully they stay gone. She is very grumpy this morning and in a no funny business mood with the doctors. Don't touch me, don't look at me, don't even breath my air. It is kinda funny because she is never like this. They said she is prob sore in her joints and bones from her counts recovering and the GCSF shots.  Hopefully they are going to take her off of one of the 4 antibiotics that she is on, called vancomycin. It makes her so itchy and gives her "red man syndrome" even with benadryl. We are hoping today that she will get in a better mood and want to take a walk down the hall, just to get her moving a bit.  I won't push eating just yet, maybe tomorrow, her mouth is still really sore.  Thank you, Thank you, Thank you  everyone for the prayers! The power of prayer is amazing!!! Keep it up

Bella is really sick and can really use a lot of prayer. Her counts have not recovered yet and she has had none stop fevers for the last 4 days. The mucositis is really bad in her mouth down her GI track to her bottom and when she breaths you can hear her rattle. Her bottom is so broke out that keeping a diaper on her is tough. It is horrible and very hard to watch her like this. She is swollen from the mucositis and we have had to go up on her pain meds so many times in the last few days. Please pray for her to recover her counts, really besides surgery she has never been in this much pain. Please share her page and ask your friends to pray for her. Thanks everyone