A fever? Whats the big deal?

As a parent we deal with many things. One of those things are illnesses. Kids get sick. Its common knowledge. It happens. They get a fever, you give them medicine and keep them home from school and play dates. When Bella or any child with a central line (also called a Port) gets a fever they can have an infection that requires antibiotics immediately. If their counts are up and they are not neutropenic, they are at less risk for an infection and can go home. When their counts are low and they are neutropenic (an ANC of anything below 500) they are at high risk for infection. That is why whenever Bella has a fever we must immediately rush her to the the hospital so that she can start receiving antibiotics.   Without the antibiotic she could go into septic shock or even worse, death. You can never be too careful with a fever.

Back during induction we experienced an infection in her central line. Two to be exact. I didn't know it then, being so new to all of this but it was very serious. No, we never came close to losing her but she was the sickest kid on the floor for 26 days. We made it out, though not by any means unscathed. So of course whenever a fever strikes this house we automatically think the worse. This past week a fever struck just in time for the weekend, our only time with daddy. Bella's ANC was only 15 so of course we ended up inpatient for 3 days. Luckily all blood cultures were negative. It seems whenever Bella has an ANC of less than 50 she gets a fever. This is the 3rd time having this occur, so now I just expect it and become a crazy obsessive mom checking her temp every few minutes. Thankfully she does wonderful and just allows it.



Since her ANC was so low we did not start chemo on Tuesday. She must have an ANC of 750. Friday we went in to get another count check to see if she would clear for chemo on Monday. We also got her her second flu shot that she needed. She cleared with flying colors.With a whooping 1500 ANC.

 So we are back on Monday for another spinal tap and a VERY long day of hydration and chemo because one of the chemos she will be receiving requires 5 hours of hydration. 1 hour before and 4 hours after. Plus we have to add in time for the spinal tap and the administering of the 2 chemos. We will be there ALL day. But we will bring our iPad and many toys to help get through the day. 4 more weeks of this awful phase and we are home free to maintenance. I'm not saying maintenance is gonna be easy because by no means is giving your child chemo every day for 18 months easy, but it is supposed to be a little easier. Counts are not supposed to bottom out as often, though it still does happen. She still can't be around anyone who is sick but we will slowly start doing activities again. Start up dance and swim class again (semi-private lessons) and hopefully start preschool. Possibly once a week. But we just got to get these 4 weeks of chemo, plus a little some after to get her counts to recover. 4 more weeks, say it with me, 4 more weeks! Woo hoo. This 4 more weeks will be very busy though. She will most likely need multiple blood and platelet transfusions, plus for the first 2 weeks, 4 days a week we will have a Home Health nurse coming out to give her her ARAC chemo shots. Not our favorite part but at least mommy doesn't have to do it. Many insurances don't cover it, so parents are required to do it. Our insurance does thankfully!



"We wait in hope for the Lord; He is our help and our shield." ~Psalm 33:20

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

Chemo hold

~Sparklers~

Well this week Bella had counts check on Monday. Unfortunately she did not make counts. Her ANC was only 580. It has to be 750 to start the new phase. This came as a blessing in disguise since Leo and I leave for Vegas next Saturday. If she clears next Monday her treatment will start on Tuesday. She will have 3 different types of chemo on Tuesday. Lumbar puncture where they inject chemo into her spinal fluid while she is asleep. They will also do another Bone Marrow Aspiration to make sure that she is still in remission and her MRD (Minimum residual disease) is still negative. After that she will have Vincristine and Doxorubicin injected through her port. She gets vincristine every phase but the Doxorubicin is new to us. The major side effect of this drug is that it can damage the heart. Hence the ECHO she had a few weeks ago. She also begins a 7 day stretch of steroids. Hopefully she does have too much "roid rage" as my mom will have her the last 3 days she is on them. Our New Years Eve was uneventful. We rang in the new years with some sparklers and a fire cracker that scared both girls. Gabbi was asleep by 9 but Bella made it midnight to ring in the new year. Our Gold Hope Photo shoot was pushed back to this Saturday since last week was so cold.

~Before, during & after photos of shaving her head~

~Enjoying the nice weather~

For those of you not on Facebook we finally have bracelets and t-shirts ordered. Bracelets are free. All we ask for is $2 for shipping and that you share Bella's story. T-shirts are $15+shipping. They are extra soft t-shirts that come in medium, large, or extra large. If you need a different size we can also order them, it will just take a little longer. If you want one of these please email me at bellaslovehealsall@gmail.com.

~Love, Hope, Cure~

~Bella's Love Heals A.L.L~

"Now faith is being sure of what we hope for and certain of what we do not see." ~ Hebrews 11:1