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

Be aware, cancer aware!

~Getting ready for dance, days b4 diagnosis~

Did you know that childhood cancer is the number 1 child killer in America? Every year over 12,000 kids are diagnosed with cancer. That's 46 kids a day. Out of those, 7 will die everyday. So many children go misdiagnosed for months. Bella included. It's a good thing Bella's leukemia wasn't as aggressive as some or she wouldn't be here today. Do you know the signs? I know you sit here reading this thinking it will never happen to me so I don't need to know. And most of you would be right but I didn't think I would ever be here either and look where I am today. The sad thing is when I was young I used to read books by Lurlene McDaniel. She wrote about the likes of cancer and as I got older I started reading Jodi Picoult. I'm sure many of you are aware of the book my sisters keeper where the girl has leukemia. APL to be specific. Anyways, my point being is I thought I knew the signs, but I didn't know enough of them. If I did, Bella would have been diagnosed weeks before she actually was. For months Bella had been having unexplained fevers. Every time I would take her to the doctor they would just write it off as a virus and just tell me kids get fevers sometimes. It's a normal part of childhood.  I didn't think this was right but I wasn't gonna speak up against the doctor, they are supposed to know what they are talking about. What did I know? I don't have a medical degree. But I do know my child and I just knew deep down something was not right. 

~Hours before diagnosis~

June 1st. Bella was at a girlfriends house jumping on a trampoline. Suddenly she started screaming in pain. I just figured she fell. I didn't see her do it but maybe I missed it. She wouldn't walk after that. I took the girls home, gave them naps and decided I would assess her when she woke up. She still wasn't walking so I decided to take her to the doctor. Our pediatrician was already closed so I decided to take her to Phoenix children's urgent care. Luckily Leo was on his way home and was able to meet me there. There was no wait and we got right in. The doc said he wanted to do an X-ray but thought it was probably a toddler fracture. They are common in young children who jump on trampolines or bounce houses. If it was a toddler fracture she wouldn't be able to walk for about 6 weeks. Great I thought,just what I needed, 2 babies who can't walk. Gabbi was only 9 months at the time and hadn't started walking yet. Nothing showed up on the X-ray but apparently that is very common as well. You usually can't see the fracture till the scar tissue has started to form. If she started walking on it on her own then it probably was just a sprain and to let her do what she wanted as children are very good as telling you when it hurts and won't do something if it causes them pain. Well sometime the next day she started walking on it again with a slight limp. Roughly 3 days later the limp dispersed. Come a week later when the same thing happened, she was jumping, she hurt her other leg and  started crying. At this point I just figured she was gonna be a kid who wasn't able to jump on trampolines. It only took a few hours this time to start walking again with a limp. The limp never went away. After a week of limping and some coercing by my husband I decided to take her back to the doctor. I knew the routine, take an X-ray, nothing shows, do nothing. But I went anyways to ease is mind. 

~Target shopping~

Friday June 22nd. I got a last minute appointment and had the babysitter meet us there. That day we were at our regular pediatrician. He wanted to get an X-ray and then I brought up the fevers again. I told him I wanted an order for blood work to rule anything else out because I felt it was strange that she kept getting them. He said that would be fine, but to wait and see what the X-ray showed. The funny thing is the doctor then proceeded to ask me if there was any type of abuse going on at home, since this is the second visit with leg injuries. Um nope sorry guess again. The X-ray was clean. I'm glad I didn't take her to have her blood drawn that Friday. We got one last weekend of a cancer free world or in our minds at least. Little did we know it was slowly taking over Bella's body. I remember that weekend. We went to Target, played out back in the girls play pool, we talked about how pale she was looking, I even joked with Leo about her having cancer. We were just a family, doing normal things.

~Waiting for her blood draw~

Monday, June 23. I really really really did not want to take her to get her blood drawn. What sane mother would want to take their 2 1/2 year old to do that. With a gut feeling and some persistence from a friend I did it. It wasn't as awful as I thought it would be and we made it out unscathed. I waited for a call to come in around 7 like it normally does that says all looks good. No call came, but I didn't think anything of it until my phone rang at 3am that would forever change our lives as we knew them.

~So brave~

Be aware. Know the signs. Be an advocate for your child. If you think something isn't right, say something. Even if you are wrong, you are better safe than sorry. Knowing these things can save a life. Possibly even your child's. Don't let your child be misdiagnosed.

~1st Bone Marrow Biopsy~

On a side note. To look back at these pictures to find the ones right before diagnosis is probably one of the hardest things to do. Looking back and seeing a healthy looking, happy child, who in just a few days life was changed so drastically is awful. It literally hurts my heart to look at them. She has changed so much in just a short 6 months. Cancer has made her experience things no child should ever have to. It has aged her so much. When I look at her now she looks so grown up. So much more than she did before diagnosis.


"Above all else, guard your heart, for everything flows from it." ~Proverbs 4:23

Christmas

I am so thankful that Bella is doing well with this phase. She has flown through it with flying colors. Always having wonderful counts and an attitude of some sort. Sometimes good, sometimes sassy and sometimes bad. I'm just glad she has one to get through this difficult journey that we are on. She just finished up her last scheduled inpatient stay, so if we end up back there it will be for a fever or a virus. This stay was luckily very uneventful. Our friend Gabby (same age & diagnosis as Bella) were inpatient with us, so it was nice for the girls to be able to play and walk the halls together. We also had another visitor, Brianne who is 7 and also has the same diagnosis as Bella. She gave Bella the cutest hat for Christmas. On top of the methotrexate, Bella also got her monthly dose of Ivig and pentamidine. Because of those transfusions we got discharged a little late and didn't make it home till around 6pm. 

~Smelling the flowers~

The weekend was uneventful and that's always a good thing these days. Monday Bella had a clinic visit and an ECHO. The ECHO is to check her heart to make sure it is all in perfect working order. The chemo called doxorubicin can damage the heart so they need a baseline before giving this drug to her. Counts were a little low with ANC only at 650, so they wanted us to come back in Friday before the holiday weekend.

~Checking in for her ECHO~

On Friday her ANC was up to 950. Yay! Just in time for Christmas. All weekend I read about other cancer kids with fevers and ending up inpatient on Christmas. We were so lucky that we had an uneventful holiday and we weren't even on fever watch.

~Clinic Visit~

This year Bella and Gabbi scored big. On Christmas Eve, they received big present #1. The train table. Story behind this is whenever we go to the pediatricians office all Bella wants to do is play with the train table. For obvious reasons (GERMS) I never let her play with it anymore. So we got her one from home. Needless to say, they love it!

~Setting up the train table~

Christmas Day was great, if you don't factor in that Bella didn't even fall asleep until 2:30 am. Not sure why that was. We even gave her some sleeping medicine that obviously didn't help.  I'm almost positive it has the opposite affect on her. By 11 she was up opening presents. She was so into Christmas this year, it was fun for the whole family. I can't wait until next year to do Elf on the Shelf :)

~The Christmas Tree~

~She loves Santa~

~Enjoying their santa hats from Boxes of Love~

They also received their 2nd big present, a dollhouse handmade by Mania (grandma)! Last year before Bella was diagnosed we bought this dollhouse hoping to give it to her for her 3rd birthday, but that project was put on the back burner due to her diagnosis, so she received it for Christmas instead.

~The finished product~

~Loves her doll house~

~Gabbi  & Bella enjoying their house~

 Bella's next appointment is December 31st for counts. If they are good, then we start her last round of chemo in the front line treatment (YAY). I cannot wait to start maintenance, its bound to be better than the front line treatment was to us. But yet I am so afraid of this next phase. It's supposed to be almost as bad as induction and you all know how induction was for us. It only consisted of 36 days inpatient with 2 central line infections, a fisher and very low counts. It doesn't help that I have been following a little boy's story who has the same diagnosis as Bella who was in the second half of delayed intensification, got a cold that turned into pneumonia that put him in the ICU where he is to this day and they don't know if he will ever make it out. To say I'm scared to death is lying. I'm scared of Bella's death. I also know in order to get her better we must go through it to get over it. It doesn't help that this year Leo's Christmas party is in Vegas. On one hand I cannot freaking wait to go!!! I need a vacation sooooo bad. But then on the other I am freaking out inside. I have only ever left Bella for 1 night and that was before she was diagnosed. She will be 2 weeks into this phase and my mind will not stop with the what ifs. My mom will be watching the girls and I know everything will be fine. Vegas is a short flight away with many, many flights in and out a day. But I can't stop myself from being a nervous wreck. I just hope I can enjoy myself while I'm there. January 12 here we come!

~Loving the outside~

Sunday we have another photo shoot. This time with The Gold Hope Project. I feel that documenting this journey is so important as you never know when your time will be cut short and I want to have all the memories. We also heard from Make-a-Wish and we will be meeting with them on January 5th. I'm pretty sure Bella had decided on Mickey Mouse's house (Disney land or world.) How she learned to refer to it this way is beyond me. I just think kids are programmed to know this info :) I hope everyone had a wonderful Christmas and we are wishing you all a Happy New Years. May this year be 1000 times better than this year.

~Merry Christmas PJ's~

We will be staying in and ringing in the new year at home with the babes. If Bella has no delays (hahahaha ha yeah right) we will be beginning maintenance sometime in the beginning of March. But knowing Bella I'm planning on April. We will see everyone then as we will be doing NOTHING while she is in this phase. With the flu and colds running rampant we can't risk Bella getting sick so we will be recluses for a little while. So who wants to volunteer to go to the grocery store for me?!? And just think when we come out of hibernation summer will almost be upon us!

~Loving the swing~

"I keep my eyes always on the LORD. With him at my right hand, I will not be shaken. ~Psalm 16:8"