5 months crap-a-versary

It's been 5 months today since our world was turned upside down. It seems like just yesterday Leo and I were discussing how pale she looked the Sunday before we got the call. How I jokingly said to Leo "what if she has cancer?" Not knowing that only a short 24 hours later would we find out the she did indeed have cancer. But then it seems like forever ago since I saw my little girls carefree smile. I can't even remember what it looked like before it was tainted with cancer, doctors, nurses, pokes and chemo. I don't even remember what our life was like before. When she hears me talking about a doctor, any doctor she immediately starts questioning me if she has to get a poke. When I tell her no (because I do alot if she doesn't have to get her finger poked) she asks if they are gonna poke her port. What 3 year old should know this? NONE! When I again tell her no she continues asking me like 20 times to make sure that we are indeed not getting any pokes. Now if she does have to get a poke or have her port accessed, I do not lie, but I really wish I could.

~Loves her hats~

 In just 5 months, our life has done a complete 180. I can tell you what I do remember. I remember getting the call at 3am. I remember the pajamas she was wearing. Green and blue froggy's. She hasn't worn em since that day and I doubt she ever will again. I doubt Gabbi will wear them either. It brings back to many memories. I remember loading the kids in the car debating which hospital to take her too. I remember calling Leo, my mom and sister. Making plans for all of them to meet at the hospital. Leo flying, my mom driving 3 hours from Show Low and Jess from Peoria. I remember every nurse she has ever had. Out of these 5 months we have spent 50 days in the hospital. That is 49 more days that I have spent away from Gabbi vs Bella. Poor Gabbi. At times I'm really glad she is a baby so she doesn't quite understand. But then I think, she is only a baby! I am missing out on so much. It sucks to be torn. But I know I'm doing what's right it's just hard to have to choose.

~Showing off her hat~

 In these 5 months, Bella has had 8 blood and 7 platelets transfusions. 4 IVIG and 1 albumin transfusion. A major surgery. 8 Spinal taps and 4 bone marrow aspirations with anesthesia. 3 ct scans. An EKG. 3 X-rays. 2 ultrasounds. More labs and antibiotics then I can even keep count of anymore. 8 different types of chemo. And we aren't even half way through treatment yet. Lets just all hope and pray that when we reach maintenance (which we are predicting will be in early April) that we will have minimal issues and she can live somewhat like a normal kid. Just one who takes chemo on a daily basis for a few years. Its funny when I go back and read the blogs I have wrote. It seems like such a long time ago and it doesn't even feel like I wrote them. I read them and I think this couldn't possibly be what happened to us, what is going on in our daily lives. And then I see my mistakes. Medical terms I had written. That I was still learning, that I wrote down wrong.  Like the difference between red and white blood cells. And accessing her port vs reactivating. All the things I now will never forget or get confused again in, these 5 short months.

~Playing outside~

 Bella is doing really well this week. Playing, eating, drinking, not behaving. All normal 3 year old behavior. We love seeing her so happy, but we know that right below the surface is the cancer and things can change in the blink of an eye. Thanksgiving was uneventful. We stayed home and cooked a turkey with the girls as a family. We didn't want to risk anyone getting sick by going to anyone else's house.

~The girls enjoying Thanksgiving~

 This will probably be the same for Christmas. We just can't risk it right now when she is still in front line treatment. This year though Bella has really begun showing interest in all things Christmas! She loves all the lights, asking constantly to bake cookies and decorate them, and really loved creating her own gingerbread house. We will decorate the tree next weekend after this inpatient stay. No real ones anymore because they aren't safe. The standing water creates mold and are super dangerous to Bella. If her counts continue to be good, we will try visiting the Zoo lights. We went last year but I think this year she will thoroughly enjoy it all the more.

~Bella's Gingerbread House~

 We head to the clinic at 3pm today for counts check. If she clears we will be at the hospital bright and early Tuesday morning at 7am for another Lumbar Puncture and the start of her 3rd round of 24 hour high dose methotrexate. Let's pray she passes the chemo just as well as the other 2 times and handles the anesthesia just as well.

"Rejoice in hope, be patient in tribulation, be constant in prayer." -Romans 12:12 

~She LOVES to paint nails especially daddy's ~

Control freak or cancer freak

Sometimes I feel like a broken record but I cannot stress this enough. I hate cancer. I do. I hate what it has done to me. Some days are great and other days are awful. And the bad days, they hit me out of the blue. I notice myself getting more angry over stupid, insignificant things. My poor husband and mom. I snap at them over the stupidest things. And when I'm doing it, I know how stupid it is but I can't stop myself. It's kind of like Bella. She needs to have some control in her life too. Like choosing what band aid or what shoes to wear.  All the control we once had in our lives have been ripped from us, so now we look for control in other things. Now I'm not saying I wasn't always a control freak before cuz I was, just not nearly as bad. But now it seems I HAVE to control things. Especially things with Bella. We have had so many miss communications lately with the doctors, I almost feel like I should start writing my own orders. The doctors and nurses may have a job to do but this our lives and we can't afford any mistakes. I take care of only Bella and the doctors have 100's of other patients, so I do try and control what is done to her and for her. I know all that I can know about Bella and her treatment and I continue to learn, because knowledge is power and I feel like as a parent I should know what is going on with her, what drugs she is taking and what side effects she can encounter. I don't like when they don't tell us everything. Even if it is a slim possibility, I still want to know so that I can watch for it. Like I said knowledge is power and if I have that then I can prevent her from having further issues.

~Cheesin~

This last week has been a great week for Bella. I think having her ANC finally above 500 for 2 weeks in a row has really done wonders for her. When we got to the hospital on Tuesday, she was actually excited to head upstairs for our inpatient stay. Though I think she was really worried I was gonna give away her princess puzzle and blanket along with all of the other stuff we were giving to the hospital.

~All the buddies raised from Bella's Scentsy fundraiser~

~$20 at the dollar store~

Originally our appointment was at 10am, but I received a call at 9:15 that they didn't have any beds upstairs so we would have to wait until they called us in. Finally we got the call to come in at 1:30. Got her counts checked and cleared for chemo. Headed upstairs after delivering all of the fundraiser toys. Unfortunately, they were not prepared for us and we were unable to start chemo until 11:45 pm. But this didn't stop Bella from taking full advantage of the playroom, cars, bikes and wagons all while being free from her IV line.

~Playroom time~

High dose methotrexate runs over 24 hours. While the chemo is running she has to stay on the 7th floor. During this time she played more than she has since diagnosis. We did so many laps on her new favorite bike and instead of me having to pull the wagon with her in it, she decided to pull the wagon around with her toys in it.

~Newest way to ride~

She also participated in a group play session where we created stepping stones. Luckily she is not afraid to get her hands dirty :) And then she also participated in a pamper yourself event sponsored by the Children's Cancer Network. She got to have her nails painted, make a scarecrow, stuff pumpkins and even make some thank you cards. Like I said, she was having a great week.

~Stepping Stone~

~Brianne, Bella, & Grace at the Pamper yourself event~

With the good also comes the bad. Not only has she been in a great mood, full of energy, she also has her very terrible 3 year old moments. Yes it is no longer called the terrible two's. It is now the terrible three's! Full of sassy attitude and NO's. My favorite. If she does not like something or doesn't get her way, she has an instant fit. Full of screaming, crying and sometimes hitting. I don't put up with hitting and she knows it but yet she still does it. At least once a day this happens. Its so frustrating. I know that this is a normal 3 year old behavior and I am very good at ignoring her. I think maybe it was those years of being a nanny? My husband on the other hand, not so much. He gives in to her every cry. No matter how much I tell him not to, he continues to do it. And she knows exactly how to work one over on him. Crying to him and loving on him. He is such a sucker! But who can blame her. Us women learn it somewhere and it might as well be now ;)

Donuts from the Nurse Practitioner at the clinic. Can you say spoiled?

Chemo finally finished a little after midnight on Thursday. After that finished they gave her some Pentamidine in place of Bactrim since Bactrim and high dose Methotrexate are not compatible. This drug helps prevent PCP(Pneumocystis carinii pneumonia) a rare type of Pneumonia that can strike any immune weakened person. Bactrim is normally taken twice on Fridays, Saturdays and Sundays. But some people cannot take this drug, either for allergic reactions, other drug interactions or since it can also cause low counts. If it is causing an issue they will switch them to another. Pentamidine is either given by IV or with a Nebulizer once monthly. Bella can only get it IV, because she is too young to use the Nebulizer. Unfortunately, we are unsure if Bella will be able to get this drug next month since there is a national shortage. All we can hope is that it will be resolved before then. Last year there was a shortage of Methotrexate (a type of chemo many cancer patients, including Bella receive). How these things happen are a mystery to me. And just the simple fact that the drugs we give our children to keep them alive and healthy can have a shortage is scary. We go back to the hospital next Tuesday for another lumbar puncture and some 24 hour chemo. 2 down, 2 to go. After this phase we have 1 more VERY difficult phase and then we begin maintenance. Let's do this!!!!

~Bella's 2011 Thanksgiving plate~

Happy Thanksgiving everyone! We are thankful for all of you. For all the prayers, donations, and presents. We are also thankful for all of Bella's nurses and doctors. Chemo and drugs. Good and bad times. Without any of these things, Bella would not be here today. 

" And let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful." ~Colossians 3:15 (NAS)

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