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

Life as a cancer mom

Today I went to the grocery store while both kids were sleeping and Grandma was there to keep an eye on them. Its nice to get out but sometimes leaving the house has a negative effect on me. I see all these other families living their lives and I start thinking about all the things we want to do with ours and the hopes and dreams we have for our children and I realize how as of right now our life is on hold. We don't know where we will be in 5 years, let alone 2 weeks. Bella was supposed to begin preschool in August. Cancelled. Bella's dance and swim class. Cancelled. Gabbi starting swim. Cancelled. Not to mention doing any normal activities like going to the park or the zoo. Today while Bella napped I decided to take Gabbi to the park. I was that crazy mom we all talk about. I made her keep a binky in so that she couldn't put her hands that were covered in germs in her mouth. I also carried sanitizer wipes in my pocket so I could continuously clean them. Not exactly the kind of park trip I'm used to. Do you know what we did this summer? I sure don't. July, August, September.  All 3 months I vaguely remember. I know that we had plans to buy a water slide, go on vacation and bask in the sun, but in one day that all changed. Even though time still went on for everyone else, our world was halted. While everyone else was bbqing and watching fireworks we were fighting for our child's life. When all my friends went on vacation, I was crying because my daughter had a fever, that resulted in a life threatening infection that required many more days in the hospital. A total of 36 days were spent in the hospital. So much more than any child should ever have to spend there. A little over a year ago my husband got a demotion. Okay I call it a demotion but it really was a promotion. He became what his company calls a product coach. He travels around to 11 stores and helps develop the kitchen staff. It was a very big adjustment to our family. Him not being home every night was very difficult. I was pregnant with Gabbi when he first started and I thought for sure he was gonna miss the birth. Oh the things I used to worry about. If only I could go back to that time. Anyways the reason he took this job was to get him closer to his goal of becoming a managing partner of his own Texas Roadhouse store. We knew going in that it would take around 2 to 3 years and we could be moved anywhere as he oversees stores in AZ, NM, ID, NV, and TX. This was fine then. Now, not so much. I refuse to move to a city without a children's hospital. I want to finish up Bella's treatment and then say good riddance cancer, chemo, doctors, nurses, hospitals and all of those things we know so much about these days. I realize this isn't a possibility. If he gets offered a store of course we will take it but we have some time. I can't imagine doing the job he does. He is out of town more than he is home. Sad but true fact. It was difficult before yes, but it must be 100 times harder now. Imagine not knowing if your child will be here next year and not spending EVERY waking moment with her. I couldn't do it. I had a hard time leaving when she was healthy and now its even that much more difficult. I realize that this cancer has a very high cure rate, but that doesn't change the fact that she could die. It happens. To a lot of kids. Which is why childhood cancer is the #1 killer in kids. She already falls in the 2% of children that don't go into remission after induction and just that simple fact makes her 50% more susceptible to relapsing. But as her doctor likes to say, 10 years ago they weren't even testing for this. We are now and that is why she is getting more chemo, to cut the cancer off at the path.  I hear about other families that have a child with cancer that have no support and friends and family that stop coming around. This is the far from what has happened to us. We have an overabundance of support. People we know and some we don't know or know well have reached out and have done fundraisers or donated money. Others have brought meals or something special for Bella. As we go through this journey we can never say thank you enough for everyone that has or will help us. We are so lucky to have all of you in our lives. As well as having such understanding and caring bosses. Not to mention good insurance! Now if only we could be a little closer to town we would have it made. This is a very long road ahead and one I try not to dwell too much on. Please continue to keep us in your thoughts and prayers.

Bella is still doing wonderful. Eating and playing like a normal kid and I love it. I can't get enough of it. We still haven't shaved her head. I just can't bring myself to do it. I'm sure it will come to that point when we need to, but for now I'm gonna just wait it out.

"The Lord is my helper; I will not be afraid." ~Hebrews 13:6

Enjoy some photos from our photoshoot in September.

2 more weeks!!!

Until we find out if Bella is finally in remission! Well okay, 2 weeks from yesterday is the Bone Marrow biopsy and 2 weeks from tomorrow until we will have the results. Most parents dread the days their children have surgeries and are put under but its so common in our new world it is just another something we deal with. Monday October 22nd we will go in, they will put her to sleep, stick a needle in her hip and withdraw some bone marrow. They will then send this sample to a special lab in Washington, one of only a few labs that do this special test. Results are usually in within a few days, so they are assuming we will have them on Wednesday October 24th and you can bet I will be waiting by the phone. If results are negative and she is in remission we will start the next phase of chemo called Interim Maintenance. It last for another 8 weeks and begins with a minimum of a 4 day stay in the hospital where she is given high doses of Methotrexate. This happens every 2 weeks. She also receives oral chemo every day and some more Vincristine. Everyone may think I'm a little crazy, but I requested that we be inpatient on Halloween. Why you ask? Because hospitals can be fun. They are always trying to make the children happy and do many things to ensure they have a good time. Not to mention, I don't have to worry nearly as much about her getting sick. That new round is schedule to begin Monday October 29th on Leo and I's 4 year wedding anniversary. I guess we will be eating cafeteria food for our anniversary this year. Not that I can complain, they do have pretty good food!

~Reading books together~

Last week Bella had a good week. She finished up her 6th week of chemo in this phase, had her 3rd birthday and gained back the last pound she lost! She received so many wonderful presents from everyone and what she loved most of all was opening them and telling us it was HER birthday! We celebrated at home with presents, lots of singing (mostly her singing to herself "Happy Birthday") and some cake.

~Happy 3rd Birthday~

 We went back to the clinic for counts on Thursday. Hemoglobin was down to 7(they transfuse at 8) so a transfusion was needed. It was already mid afternoon so we decided to come back the next day to get blood, but first she needed to be accessed so that they could take blood and send it in for a cross and type.  This port access was awful. Usually I hold her down while the nurse accesses her. This time it took me and 2 other nurses. It didn't help that we also decided to give her her ARAC chemo shot at the same time. When they finally got her accessed, they couldn't get blood return so they had to re-insert the needle. Finally we got blood return. They left her accessed so that we didn't have to go through all of this again tomorrow. Little did we know that sure enough we would. We got there at 11 and they couldn't get blood return. So we had to remove the bandage, take out the needle and try again. No time for the numbing cream and I opted out for no freeze spray because last time we used this we had a positive blood culture and positive swab from a port infection. I'm not saying that the spray was to blame, but hey you never know! They re-accessed and immediately got blood return. Woo! I'm pretty sure I jinxed us at the previous clinic visit when I told the nurse how surprised I was that we hadn't had any issues with her port, because it is a very common issue with kids not getting blood return and such. But we got it to work and her transfusion was under way.

~All of her Hello Kitty goodies~

 The weekend was uneventful and before we knew it, Monday was upon us. Back to the clinic for counts and week 7 of chemo. Accessing the port went much better this time. She didn't even cry when the nurse inserted the needle. Platelets had dropped to 19, so we needed a transfusion before we could receive chemo. I had a feeling we would be needing them. She had a ton of bruises all over body caused by low platelets. Usually she gets petechiae and this was a first with the bruising for her. Good thing was her ANC was 740, so she was finally not neutropenic. Bella also had a visitor today, Aunt Becky! She came and hung out with us and watched over little sister Gabbi. 

~Everyone aboard the ship~

After the transfusion she got her Vincristine through her port and her PEG shots in each leg. Daddy came too after all the hard stuff was over and we were on watch to make sure there was no reaction from the PEG. After our watch was over we went and watched the trains that were finally up and working again! Since being diagnosed, the trains have not worked. They were under some type of construction, so when Bella saw they were working, she got very excited! She loved watching them.

~Look at the choo choo's~

 Finally we headed out, but not before getting 2 special visitors. Tanner Ridge and Reece Nevaeh. They hadn't seen Bella since right after diagnosis and they had a birthday present for her. A Build-A-Bear named Sugar Booger (Bella named him) that sang Happy Birthday and a Cinderella Halloween costume! Both girls napped on the way home from a long day at the hospital.

~Sleeping Beauties~

We are back again on Friday for another count check and then Monday for another dose of Vincristine. Thank you everyone who continues to do so much for us. I know there are so many less fortunate people going through this battle alone and I thank God for each and every one of you.


"This is the confidence we have in approaching God: that if we ask anything according to His will, he hears us.' ~1 John 5:15