Before that bad word entered our lives!

Before cancer, I worried about the little things. A cold, a fever, the flu, or a rash. I would complain on Facebook when my kid was sick and how it was an inconvenience to our lives. Now any one of these things could be life threatening to Bella.  I wish more than anything I could go back to that time. When it was an inconvenience. I wish I could continue being oblivious, thinking something like this could never happen to us. But we can't. We can never go back. Whether she is cured or becomes an angel, either way me and my family will always be affected by the worst word in the world besides death, cancer. No one wants to hear this word used in a sentence pointed toward you or your family. Especially not your child. Recently in a cancer group of moms that I am in, there was a slight debacle about the use of the F word. Before cancer, I would use this word but not often because I had babies and I didn't want them using this word. Now when I use this word, I can tell you it is almost always directed toward cancer. Because cancer sucks! Someone once said they couldn't think of any nice word to describe cancer. I couldn't agree more. For now on the only bad word that matters to me is the word that invaded and changed our lives forever. Cancer. 

~Like father like daughter~

Last night I was lying in bed thinking how hard it must be for Bella. She is the one fighting this. The one dealing with all the pokes, drugs, side effects. I decided last night that I needed to wear my big girl panties and suck it up. No matter what my issues are, hers are always gonna be worse than mine. Yes I may have to drive her to every appointment, sleep on an uncomfortable couch and deal with her extra crabbiness and craziness. But you know what, I wouldn't give it up for anything. I will be here for her forever, no matter what she needs. Because she is the one fighting this fight and she needs me to always be in her corner. To be there for her when she needs some turkey in the middle of the night or rice and beans from Filibertos. I'm here. That's what I always tell her when she is hurting. The best thing about that is she knows it. When I'm hurting she will tell me I'm here mommy. I love when she tells me this. It warms my heart knowing that yes she is here with us.

~Bubble Run~

This week has been a good week for her. After escaping as I call it from the hospital Friday we haven't done much of anything. She did start developing a few mouth sores on Sunday but they never really bothered her. Except when eating peanut butter and jelly sandwiches. Not sure why that would bother them but every time she ate one she would cry and tell me that the peanut butter and jelly hurt her :( she has gone through about 10 packages of turkey and bag of baby belle cheese. I'm just glad she is eating. After losing close to 2 pounds she gained all of it back plus 8 ounces according to her clinic visit on Tuesday.

~Dressing herself~

Her numbers were fantastic and for the first time in many months she was no longer neutropenic. I was pretty shocked. I even asked them if they double checked these numbers it was that good. 3200. Seriously it is 3200. We go back to the clinic next tuesday for a counts check. If she clears we will go inpatient for #2 of our 4 scheduled in patient stays for this 8 week treatment phase. This week Bella got a special treat. Her dance instructor offered to give her private lessons since right now she still can't be around other children. She loved it. Even though she was a little clingy with mommy and made me dance with her we still had some fun.

~Dancing away~

As you guys know, we shaved Bella's head last week. We had a photographer here so that we could document the moment. Visit her FB page at https://www.facebook.com/pages/BLudington-Photography/168465623204286?fref=ts to see a special that she is running where all proceeds go to Bella.  Overall it went really well. Surprisingly, the adjustment was not that difficult. I think the hardest part was just coming to terms with how now she really does looks sick. When we go in public people definitely stare more. The only time she even mentioned her hair was the next morning when she woke up and looked in the mirror and touched her head and said my hair is gone. That was it. It amazes me how strong she is. And reminds me about the things in life that are frivolous.

Now, I don't want anyone thinking that everything is awful because the of the cancer. Because really it has actually made our lives better. Now don't get me wrong, I would never wish this upon anyone nor do I want Bella to have cancer. But since we were dealt this hand, we are trying to take it in stride. We have met so many wonderful people and had so much support. We are realizing what is important in our lives. Family. Its the most important thing. We don't sweat the little things anymore. We take advantage of the time we have together because we don't know when that time will end and they are only young for so long. Who knows how long they will actually want to play with us. And now I feel like I actually have a purpose in life. I want to reach people and make them aware of Childhood Cancer. I hate hearing that childhood cancer is too sad, so people don't want to hear about it. Well it happens and people need to know about it.

~Swinging life away~

Recently we had a Scentsy fundraiser where proceeds went to Bella and we got a whole bunch of free product. Now I love me some Scentsy, but I don't need any. We decided that instead we would use our free product and purchase Scentsy buddies (they are stuffed animals that come with a scent) and donate all of them to the hospital. They are always in need of toys, coloring books, crayons and etc. In addition to that I boxed up many of the things we received for Bella and will also be donating them. To be honest we have so much stuff and are so fortunate to receive so much that I want to be able to share the wealth. I really wish that it didn't take cancer  for me to learn about the hospital and its workings. But now that I know, I will always be looking for ways to help. So now that Christmas is approaching, the hospital needs more stuff than ever. So if anyone feels like donating some new coloring books, toys, crayons or anything, please let me know. $20 can go along way with stickers, toys, coloring books, play-doh.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." ~ John 14:27

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

Listen up God

I realize you may think of me as a strong person and I am but I can't keep it up forever. I need a break. I need something to go my way for once. I need to know if Bella is in remission. I need her not to spike a high fever when we go home. I need her not to have any positive blood cultures or illnesses. I want a stress free cancer ride. Some people get that. Why can't we? Obviously we have not had a stress free cancer ride.



My last blog posted about what an awful week that week of October always is. Well apparently I posted it a day too soon. It did not get better. It got worse. Much worse. Saturday Bella was running 99.9 all day. At one point it reached the magic number 100.4, plus some vomiting as well as diarrhea. I called the on call number, BUT busy signal. And busy signal and more busy signals. 3 hours of trying, I decided to give up. Gabbi had been sick and Bella's fever wasn't going any higher so I decided to wait it out. Sunday went well. Fever was all but gone until around 3. Bam 100.5. I called and talked to the on call doc and decided we might as well come in because we didn't want to end up in the ER in the middle of night possibly catching something else. In we went. Luckily Grandma was on her way and was able to stay with Gabbi so that Leo and I could go to the hospital. 2 days of the hospital and a blood transfusion later,  we were on our way home. All cultures came back negative and no more fevers. Leo left for Idaho and I packed up.



Now I'm not gonna lie, for some reason I had an awful feeling driving home. Bella was tired and even fell asleep on me before we went home. And was already asleep in the car not even 10 mins into the drive. I pull in the driveway shortly later where Bella is still sleeping. Grandma takes her and says she feels warm. We check her temp. 102.9. I'm already freaking out. We just got home. Just left the hospital. What the heck do you mean she has a fever. I call. They call me back. They tell me to give her one dose of Tylenol and to recheck in an hour. An hour later still at 101. I call back. This time I talk to our nurse. She says what do you mean it's at 101? Last time you called they told me it was only 100.3. Um no more like a 103. Well that of course changes things. She calls the doc. She calls me back. They want us to come back in but they don't have a bed for us yet. The charge nurse is gonna call me when it's time for us to come in. 35 mins later we are on our way back in. Bella is freaking out. She doesn't want to leave grandma and go back to the hospital. We get the same room, they re-access her port and start antibiotics. Of course now the fever is gone.

~Playing in the playroom~

Sometimes I forget that everyone doesn't understand our cancer language. Whenever someone with an immune compromised system that has a central line (port) gets a fever it is imperative that they start antibiotics right away. Many things including septic shock can happen in a matter of hours. We knew Bella's ANC was low a very low 10 so going home wasn't really an option. And I really thought for sure we were gonna have another positive blood culture, but we got lucky. They all came back negative and she never got another fever. But since her ANC wasn't rising, we weren't going home. Being in a hospital is so draining. I have no idea how I handled 26 straight days with only 2 small breaks. You are stuck in this little room with little to nothing to do but yet you still don't find time to do anything else. Maybe if Bella was older it may be a little easier. But she is young and scared and if I try to do anything without her, she cries and cries and cries. All my energy is spent on her. Not that I would have it any other way, but it is hard. And at times I feel torn. Poor Gabbi. Just getting over being sick and all she wants me to do is hold her and spend time with her. But I can't. Bella will have none of that. I'm her mommy and she does not share when she is in the hospital. Did I mention sleeping? Oh I didn't? That's because there is NO sleep. Even when there is nothing going on I still couldn't sleep. I told you my life is consumed by cancer. I find myself lying in bed thinking of questions to ask the doctor the next morning. Even if it doesn't pertain to Bella per-say, I still have to know everything about it.



Friday arrives and we get to go home. Woo hoo. Though her ANC is still super low. Well 0 actually. But her other numbers have gone up and he thinks she is now at a much less risk for infection. I'm not gonna lie. I am super nervous going home. 3 days fever free but you know what happened last time. The evening went off without a hitch. No fever, she was eating, all was good. Not until the next day around 5 her temperature started to rise. I was at a Scentsy party for Bella and Leo said her temp was 100.2. When I got home 20 mins later and re-checked it had already risen to 101.2. A quick call to the doctor confirmed what I already knew, we had to come back in. But this time we were going to the ER. This is our first time back since her diagnosis. Surprisingly it went off without a hitch and we got to go home after she got some antibiotics. Next appointment is on Monday for counts check and then hopefully getting her bone marrow aspiration done on tuesday and also beginning her next phase of treatment. When this phase begins, we have a total of 2 years left of treatment. Now all we need is an all clear REMISSION! Hopefully this week we will finally have this long awaited answer.

Finally home from the ER

"Because of the Lord's great love we are not consumed, for his compassionate never fail." ~ Lamentations 3:22

~Bowling to pass the time~

On a side note: I know that everyone is concerned and wants to speak with me but I need everyone to be patient. I am not up to talking to people. All of my energy is spent on my children and my husband. If I don't answer your calls or call you back it does not mean that I do not love all of you. It means that I am currently making memories with my children, one of which has a life threatening disease. Please try and remember this! Thanks again to everyone who is here supporting us.

Life is too short

   This week has been an especially trying week. The news of yet another delay was kind of expected, 2 cancer kids I had been following had gone to be with God, Gabbi was super sick, and 9 years ago on October 19th Baby Slade died. I should have known this week of October was gonna suck. It has never been an especially good week for 9 years now. Few that know me know the story, but there are many who do not. Baby Slade was an 18 month old little boy from my hometown that passed away from choking on a screw from a ride-on toy. I loved this little boy so much. I was his babysitter and I watched him grow up, if you can call it growing up in his short life. I remember talking with his mother about what sports he would play when he got older. His family is especially big into baseball but I thought for sure he was gonna play basketball. He loved throwing the ball into the hoop. I don't know why but that is a memory I can't forget. When he died, my life changed. He was not my flesh and blood but for a 17 year old this would be the worst thing to ever happen in my life (or at least I thought it would be until Bella got cancer.) A child that I loved so much was taken so suddenly from this world. And life went on. But I would never forget. This is not something anyone forgets.

~Baby Slade~

 But like I said, life goes on. I got older and each year this week would hit me like a freight train. I am sure its nothing like it does to the family though. Before I knew it I had a family of my own. And from that heartbreak I knew just how short life could be. I always take special care to make sure Bella and Gabbi know just how much I love them. Since before I can remember, whenever I would buckle Bella in her carseat I would always kiss her and tell her I love her, because lets be honest you never know what is going to happen. As she got older she started saying I love you too mommy.

~Love her~

 Now since the cancer has invaded our lives, I probably tell her this at least 10 times a day and you will find her telling me too all on her own. Best feeling in the world. I don't ever want to go a day without telling her this or her telling me. Even though I hate cancer, I am grateful that she was not just taken from me. I am so thankful that I have this time to spend with her, no matter how long or short the time may be. I think about Baby Slade's mom and how he was just ripped away from her without another word. I think about how strong she was and is still to this day. And I'm so glad to have her here while Bella and our family fight this fight. But I never ever ever want to know how she feels. I do not want to lose my child. God listen to me! Please don't take her yet. Let her stay here with me and her father for many years to come. I don't want Gabbi to be an only child. I want her to know her sister, like I know mine. Please God! Hear my prayer.



This journey has taken me many places in such a short time and right now my life is consumed with cancer. It's all I can think about. I can't sleep. I don't sleep. I should be sleeping now as I write this but my brain won't shut off. One good thing about cancer. Yes, there is a good thing and only ONE. It's how people come together. How people I have never met do so much for you. Don't get me wrong, I would trade all of that in for a healthy kid but like I said before positive thinking people. When she was first diagnosed I remember thinking I don't want to know these people. I do not want to become friends with these nurses and doctors and mothers going through a similar experience. But now I am so thankful that I have these people in my life. Especially the moms. They are always there for you. It's like you are in a secret club and can only be invited if your kid has cancer. Sucky, but true. They know what you are going through, have felt what you felt. Thank God for these moms.

Link to the recalled ride-on toys http://www.cpsc.gov/cpscpub/prerel/prhtml04/04119.html

"The Lord will give strength unto his people; the Lord will bless his people with peace." ~ Psalm 29:11

Unpredictable

If there is one thing I have learned during this experience it is that cancer is an unpredictable son of a biscuit!  You never know what it will bring you. Low counts, sicknesses, delay after delay, diarrhea,vomiting and etc. The list goes on and on. So far we have been through 2 phases of her treatment. What should have taken us 3 months has so far taken us 4 months. We haven't even reached the 3 years from here is the end of treatment mark. Guh more than 3 years left you ask? Yes, at least 3 more years. 

~Little cowgirl~

On Saturday we were invited to a fundraiser event for Hope Kids. They are an organization that provide events and activities for children and their family with cancer or other life threatening diseases. When I first signed up with them, the director Bridget called and asked if Bella could do this fundraiser. She said she would be the perfect model for this. B. Belle Couture made her her very own dress and named it Bella. I was a little worried about the timing and her ANC but it all worked out in our favor and we were able to go.

{Bella Dress}

We all had a ton of fun, even Bella. This is the 1st time she has been out in public for a long time. And of course we bought some things too. Bella got a bumble bee costume and Gabbi got a matching Bella dress as well as a Flapper outfit.

~Little monsters~

This week we visited the clinic on Monday. She got her last dose of vincristine for this phase and had a count check. Counts were low but no transfusions were needed.

~Chemo time~

 Then we discussed the game plan for the what IF's. IF the test comes back positive? IF she will need a bone marrow transplant? I hope that we never have to travel down this road. Not only is it rougher and bumpier, it also ensures that she will NEVER be able to have children. Not that there is any guarantee now because of all the chemo she is getting, but there is still a chance that she can IF she wanted too. With a bone marrow transplant, she has no option. IF the test comes back positive we will continue on the road map we are currently on. Possibly test Gabbi to see if she is a match because there is a 1 in 4 chance that she is. Then after the next 8 week phase we will re-test. IF after the next phase it is still positive then BMT is next on the horizon. But hey this test is gonna come back negative RIGHT?!

After the clinic visit we got visit miss Reece.  Bella loved playing. Even if she did have to wear a mask the whole time.

~Bella & Reece~

We were originally scheduled to go back on Friday but Bella took a few hard falls on her head this week so we moved up the appointment to Thursday. Counts were close to the same as Monday. ANC is still super low at 60 so we will be doing nothing again this weekend.  Bone marrow aspiration has been pushed back until her counts come up. We are hoping by Thursday her counts will be high enough for the BMA. Unfortunately there isn't much of a protocol for kids with a positive MRD. Since only 2% of children diagnosed with A.L.L have a positive one, we kind of have to wing her treatment. Yes, she is still getting the necessary chemo but when to actually do these tests are up in the air. We decided since last time her counts had not recovered at all that this time we would wait for them to recover fully. This sucks because now we have to wait some more to know if, yes you guessed it, she is FINALLY IN REMISSION. 

~Cheese~

As the time nears closer for her next bone marrow aspiration I can't help but get antsy, nervous and afraid for the outcome. I find myself praying to God asking Him to please, please heal her. Let her be in remission. I find myself begging Him, pleading with Him and challenging Him. Yet I know no matter what I say can change what He has planned for her. I just hope in His plan He heals Bella, puts her in remission, and gets this show on the road. If God wanted me to learn to be patient couldn't He have chosen a better way? A way that didn't involve the possibility of my child dying? I try really hard not to dwell on this fact. She will make it. She has to make it. That is what I tell myself anyways. Keep thinking positive thoughts. Only positive thoughts. 

~My whole life~

"Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God will be with you wherever you go." ~Joshua 1:9