Chemo and New Brother !

I had my 16^th week of chemo on March 9^th, my daddy took me since my mom just had a baby the week before. I did really well and had so much fun with my dad. He let me play with his phone and we used the “funny face” app and it made me laugh a lot. My dad spent a long time talked to my doctors about my most recent issues. I have been having trouble with my hands and feet. They told my dad it’s because of the Chemo drug Vincristine that is causing Neuropathy (nerve damage). I have lost a lot of function in my hands and have a hard time hold things, picking up, opening doors, and don’t have much strength. My feet and legs are very weak, I slap my feet when I walk and I have lost a lot of strength in my legs as well. My doctor tells me that my nerves have been damaged and we need to stop the drug and start physically therapy to help. 2 weeks ago I started going to PT every week. I really like it, my PT is Rachael she is super fun. We do exercises for my legs and feet and play games and do fun activities.

My new baby brother was born on Feb. 27^th, his name is Liam. He is sooooooo cute and I just adore him! I always want to hold him and feed him and rock him. I am a big helper for my mom and she really likes that. My grandma Turner got to come and stay with us when my mom had the baby. It was so fun, and my aunt Rischel surprised us by coming as well, she even brought my cousin Nora with her! We had so much fun playing and aunt Rischel painted my nails and took me to the park. My grandma got to sleep in my bed and I slept on the air mattress, I thought that was super fun! Grandma took us to the Zoo one day with our friends Whitney and Lindsey. We also got to go see a new movie called ZooTopia! I just loved it and came home and told my mom all about how funny it was.

(Mom) The past 4 weeks have been very adventurous to say the least! After Liam was born I had some complications and had a minor surgery 5 days post partum L it was not well and the recovery was very difficult. I was so glad my mom was able to stay and help out for the 2 weeks after. Now I am almost fully recovered and we are back to normal life and running around. I will say that 3 kids is easier than 2 as my first 2 were so close in age. Reece and Turner are such a huge help and just adore little Liam. He is by far such a good baby and has made my life easy. Reece is doing pretty well from what we can see. She is upbeat and happy, she seems to be taking all the major changes very well and hasn’t been sick or felt yucky for a while.

Yesterday March 30^th I went to chemo…. This was my 19^th week at chemo. I was pretty good about going and didn’t get sad or upset. When we got to the port room I started feeling nausea's and started throwing up. The saline and heparin flushes are making me sick and make me throw up, this has happened before. I really don’t like the taste of the flushes and it makes me super sick and that’s why I throw up. I tried to be really brave and not get scared or anxious but it was hard since I was throwing up both times they put medicine in my port. During chemo my child life specialist got me a fun craft to paint, I really enjoying painting. 

(Mom) during clinic yesterday we talked about how Reece’s neuropathy in her hands and feet have been doing since we stopped the Vincristine. I have seen some improvement but it’s very little as they said it would be. We also talked about her eye lid drooping and noticed it has improved a lot. After discussing with the Dr’s we decided to give half dose and see how she does. If she gets worse then we will stop again and re-valuate. After missing 2 doses of the Vincristine the Dr was worried about skipping again, as this drug is very effective and we don’t want to risk the cancer cells re-growing. It’s hard yet again as you want to treat the cancer but what you’re using can cause other issues. I talked with our social worker as we were waiting and she mentioned that it can be very challenging and tough to see these changes. Although it was difficult and still is to watch Reece struggle doing tasks that she has easily done for the past 3-4 years of her life I try and see it in a different perspective. Although the nerve damage should reverse itself, or if it does not, I thought that nerve damage is a lot better scenario than her cancer coming back. If I’ve learned one thing throughout this whole thing is that “things are not always what they seem to be”. Science and medicine is not perfect. I thought that we we’re smooth sailing through this and it was going so well. In reality I feel that it has gone very well, these few set backs were not a surprise, it’s just that we didn’t see them coming as we didn’t want them to happen. Reece is such a strong girl and she amazes me always. I don’t know how we continue to tread through this battle. I’m positive it’s because God doesn’t give us anything we can handle. That is something that has helped me through this all. As much as I like to say “why” I have to think it could be harder or maybe this is the hardest thing we will face and after this is over we will be sailing smoothly!!! Haha probably not.

This week at school my class gave me a very special quilt they all made together. All the kids in my class drew a picture and one of the room moms put the patches together to make a blanket. It was really neat and I felt very special. I really enjoy my class and my teach Mrs. Brun is so much fun.

 

Chemo Week 13

Yesterday was my first day back for Chemo after a 3 week break. It was a long day since we had a lot of testing to do before we started the next phase of my chemo. I first had an echo-cardiogram of my heart, and after I was done the nice tech gave me a special prize. I got a lip gloss making kit! It was so much fun making lip gloss with my mom in the clinic. After we left echo I had to have a CT scan to check for any new growth in my belly or lungs. The CT scan was clear and I was able to start my next phase of Chemo. After the CT scan we went back to the clinic for chemo and my mom and dad met with my daughters and went over the results of all the tests. I did very well with accessing my port and my mom and the nurses were so proud of me, this made me feel good inside! My mom and dad said it’s not always easy to do hard things but when I do it makes me happy and I think I can do hard things.

(Mom) I took Reece to school this morning and dropped off 3 other kids. On the way in they were all laughing and giggling, Reece had chemo yesterday but her spirits were high and her energy was pretty good and she was so happy! This made me smile and feel wonderful even after all she is going through she has always been pretty upbeat

(Mom) About 2 weeks ago Reece told me that her thumb and pointer finger felt funny and tingly. We were worried about her feet having nerve irritation but didn’t think it would start in her hands. We started noticing her struggling to button her shirt, open things, pick up small items, and hold her cup, pencil and more. So at the clinic yesterday we talked with the Dr’s about what has been going on and the cause is from “vincristine” drug which she has received 13 doses and it’s a vital treatment drug but we have to stop so the nerve irritation doesn’t become permanent. We talked with the OT and got some exercises to start at home and we will be working with the OT at her school. It is actually very difficult to watch her struggle with the fine motor skills that she has had since she was a small child. She is so patient and never complains about not being able to do these seemingly simple things. After she tries and tries she will then ask for help if she can get it. I am just so amazed once again at how well she is handling things. As much as she wishes she didn’t have to go to chemo any more she does well and tries very hard to understand that all she has to go through is only helping her.

As I’ve said before about chemo being like a double edge sward…it is something that will save her and we hope will cure her cancer but at the same time it can cause other problems to her body L  I know that modern medicine is vital and I am so grateful for this day we live in, the technology we have with science is amazing but there are those times that you hear about or go through first hand that “it’s not working, or we have to stop because its causing issues that may be permanent”. Yesterday I sat in the waiting room of CT and started talking to a lady who was there with her 3 year old granddaughter who was diagnosed with Neuroblastoma last May. She has already had 3 different chemo treatments that haven’t worked L and they are trying something new yet again. I thought to myself. “How blessed are we, Reece was diagnosed, had the tumor removed and started chemo right away, 15 weeks into all this we got back good results indicating the treatment is working”. Why is this sweet child going through this relatively common cancer and they can’t get rid of it? Science has come a long way but our bodies are more complex than humans can fully understand. I do know that whatever happens to us s only to help us learn and grow and become stronger than we feel we can become. God put us here to test us, to help us learn, grow, explore and discover all we can. Sometimes it’s hard, sometimes we don’t fully understand the complexity of the human body and why we can’t fix someone with a disease that has been successfully treated for years. Every person’s body is unique and these diseases that affect us are not always as similar as we think. Yet I feel that Reece so far has had a good outcome. She has had a very successful treatment, minimal issues, and minimal side effects until now, minimal complications. As hard as this has been I feel very blessed to have this experience go as smoothly as it has. Seeing first hand and talking to so many other parents and how their journey has been rough has been heartbreaking to hear about. Although our journey has felt relativity easy I feel for those who have things more difficult and go through much more than we have. It’s heartbreaking to watch these innocent children go through these unseeingly difficult trials to only be told that “it’s not working but we can try something else”.  I am grateful for all that we have been blessed with, good results so far and a good outcome with her disease. Reece has been so strong and pretty high spirits through all this at her young age. I honestly don’t know how I would handle all that she has gone through but I can say that as her mother I have to be “strong” maybe as strong as or even stronger than she is, I have to do this for her. Clinton and I have to do our part in this trail. The Lord didn’t just intend this trial to be for her… this is for all of us, for us as a partnership and family. I’m still trying to learn what exactly I am to gain from this or what I’m supposed to learn from this, maybe it will come soon maybe it will take years to find out what this was all for. I do know that every trial, every situation good or bad has a purpose and we will without fail “know” someday WHY?

Enjoying My Break!

It’s been 2 weeks since I had Chemo. I have really enjoyed this break, last week my mom and dad teased me about missing my apt! 

I have been going to school almost every day since my last chemo. I even started walking into school all by myself! For me this was huge since I was so scared and nervous to go alone, but one day I got out of the van all by myself and walked in. My mom was very happy and proud of me, I also haven’t been sad or cried at school since then. On Feb. 2^nd I lost my 4^th tooth! I was at the table eating dinner when I somehow bumped my mouth on the salt shaker…. which knocked out my front tooth. It was already loose and very ready to come out it was just taking a long time. It hurt and started bleeding a lot but I was glad it was gone after a couple days, now I can eat better and my mom says I talk funny!

I got to go to my friend Phoebe’s Birthday party a couple weeks ago. I was excited but also nervous but had such a great time. She had a unicorn party and we did lots of fun things. I came home and told my mom how much fun I had and how her daddy was silly and making us all laugh!!

I still get tired often and take a nap almost every day but I’m happy that I am healthy enough to go to school and play with my friends.  

(Mom) Reece has made HUGE milestones and improvements since her last chemo. I am just so happy and proud of her. She is really enjoying this break as we all are! She started going to school without crying and even walking into the classroom by herself. The first day this happened I was in total amazement and just screaming inside. This small step was a HUGE leap for her. I immediately called Clinton and told him what had just happened. I honestly thought it was just a fluke but she has gone in by herself every day since and even allowed Jessica to take her to school.

I am so grateful Reece is strong and healthy enough to be able to go to school, play with friends and get out as often as we can. I was worried that being winter and all the bugs that go around during these months would make it very hard for us to go out. It’s been an amazing winter for us as far as not passing the usual bugs that typically go around the neighborhood. Reece had that one small bug a few weeks back but until yesterday none of us in this house have had so much as a cold, cough or running nose. I look at it as the biggest blessing for Reece. The common cold for anyone not battling cancer is hard enough but with her immune system very suppressed it would be much, much worse on her body. Yesterday I woke up with a very sore throat and aches so I stayed in bed and kept my distance from Reece. Feeling good today and hope that the bug I had will not pass to anyone else in the house. Just 17 days until baby brother comes. The kids are anxiously waiting for his arrival!