Madi did it! She walked across the stage tonight. I was so proud of her. She is K-State bound in the fall.
Madi did it! She walked across the stage tonight. I was so proud of her. She is K-State bound in the fall.
It has been a long time since I have wrote about cancer. It has been nine months since Mallorie was done with treatment. With only having a monthly checkup on the calendar, one would think cancer would be pretty much a distant memory. At least that is what I was hoping.
The whole time Mallorie was going through treatment, all I could think about was reaching the end. Once she was done with treatment we could move on with life. I wish someone would have prepared me for what happens after treatment. Which to me, is turning out to be worse than the cancer itself.
Mallorie has been feeling unwell for many months. She has been having a hard time breathing. Most of the breathing episodes happen while at school or at night. And ever since she finished treatment, it is like she can’t sit still or be alone. Mallorie has always hated being by herself. Even as a little kid she was always at someone’s feet. She has been to the doctor many times over the past nine months for respiratory issues. Yet chest x-rays, oxygen monitoring, blood work and heart test all show she is in perfect health. So what the heck was wrong with her.
She kept telling me she was crazy. She would cry all the time for no reason. She worried about things she cannot control, like terrorism. What teenager really is so scared about terrorist they don’t want to go to the movies or church because they are afraid someone is going to blow or shoot the place up? She couldn’t shower alone most of the time. Then she had two fainting spells.
I finally took her to the ER this week because she briefly passed out. I wasn’t leaving the hospital until I had a solid answer to what was happening. I started thinking maybe it was due to the scar tissue on her lungs from chemo. All the same test were ran, EKG, x-ray, blood work, but everything came back excellent. Which under normal circumstances would make a mother relieved. Nope, not me. I was confused. I was sure the doctor thought I was one of those mom’s that want their child sick for attention. Her physical condition wasn’t adding up to her symptoms.
When it was time to be discharged, the doctor came in and dropped a bomb I wasn’t expecting. He said all the symptoms seem respiratory and I can see why you would think that. Actually I think we are dealing with anxiety. A light blub turned on. Everything started making sense. I wish I could say I was relieved.
Just like when she was diagnosed with cancer, I had know idea what to do or where to turn. Anxiety doesn’t seem like a bad thing. At some point everyone experiences some form in their life. It’s usually brief and disappears as quickly as it came on. For Mallorie it is consistent and always present. What a horrible way to feel.
I am no therapist (she is going to start seeing one) but I am going to bet, knowing her since birth, she has always had some form of anxiety and cancer just raised it to the surface. Cancer is such an ass. We were supposed to be done and moving on, but now we have to deal with the traumatic mental baggage that comes with cancer.
I started doing some research on anxiety and how to be a caregiver of someone with such an illness. What sucks is that everything I have been doing and saying to her thus far, is exactly what a caregiver should not be doing and saying. Talk about feeling like a jerk.
Today I am just tired. Tired of the worry. Tired of wondering what is going to happen next. Parenting is hard enough under normal circumstances. All I know is I want to be the safe place for Mallorie and learn to understand how to deal with this. I struggle with patience and I have to focus on being more in control of that virtue.
If you have some positive insight on anxiety I would love to hear it. I am not about to even pretend I know what to do.
The play begins on a warm day in early spring. A tiny egg is laying on the leaves. Fred, the frog, is keeping guard of this little egg, keeping the birds from eating it. The birds are hungry, but Fred is persistent on allowing this egg to be left alone because something beautiful shall come from it.
Egg, caterpillar, pupa, butterfly.
As I watch this performance, my heart was full of joy. Logan looked so cute as Fred the frog and he said his line perfectly, “Get ready for a beautiful surprise!” To me, this little play meant more to me than the story of a butterfly. It was symbolic for how fast our children grow up.
Like Fred, when our babies are born, we want to keep them safe and sheltered. Then as they grow, we give them a little more freedom. Then before you know it, they are spreading their own wings and flying away, strong and beautiful.
The boy did an amazing job with his three lines. And he wore that frog costume with pride. I can’t believe my little dude is going to be in second grade.
I am so honored to get to be his mommy.
I forgot to post this photo over Christmas. The picture on the left is from 2013 about a week after Mal was diagnosed. When we were at the Wichita Littlest Hero’s Christmas Event, Mallorie wanted to replicate the photo from 2013, so that is the photo on the right. Sometimes you just don’t know how far you’ve come until you can see where you are now. From a straight-haired girl to a curly young lady, we are thankful for such wonderful progress.
It is so funny what the boy thinks is awesome. He loves WWE, skateboarding, Star Wars, Xbox, Sponge Bob, YouTube, Roblox, and Happy Meals. I don’t think there is anything that comes out of that kid’s mouth that doesn’t either make me laugh, smile or completely melt my heart.
This morning while I was getting around, he walks into my bedroom and says, “Mom, I can wipe my own butt now and I am a good reader.”
That had me busting up laughing. It amazes me how his brain works and how he categorizes things.
It is true though. He can wipe his own butt now and is a good reader.
Yesterday when we received his report card, there was a slip of paper included that stated he is a Star reader and reading at a 2.3-3.3 level. He is in first grade, but he can read anywhere from a second grade third semester to a third grade third semester.
That makes me so happy because I didn’t enjoy reading until my adulthood and to know he is good at it and somewhat enjoys it is an excellent start for his education.
I try to place how he became so advanced in his reading abilities. He did attend preschool and did well in Kindergarten. My guess is it’s my awesome parenting skills and allowing him hours upon hours on the iPad. (Insert sarcastic tone here.) But it is probably because he has such an amazing school and wonderful teachers.
Now for the butt wiping part, we’ll give daddy the credit for that one.
Tonight I hope we’ve started a new tradition. About a month ago I came across this little red mailbox at Goodwill. I thought it was super cute and knew I could come up with some use for it. It didn’t take me long to concept the idea that I hope will bring my little boy some excitement and joy at Christmas time. Logan’s innocents and love for Christmas has really be infectious for me this year. Not sure why, but his love for “all things Christmas” has got me feeling all warm and fuzzy. I just want to bottle it up and save it forever.
I’m calling it Santa’s Magic Mailbox. I went to the Dollar Store and got some stickers to decorate the box and purchased “special” paper and a “magical” pencil. (It’s one of those big, fat pencils.) Before bed, Logan can write Santa a note, put up the little flag and Santa will write him back by morning. And sometimes, Santa may even leave him a little surprise inside. The whole project, so far, has cost less than $10. And that even includes a few little trinkets for Santa to leave from time-to-time.
I am pretty excited to see what Logan writes to Santa and the excitement on his face each morning. I will post periodically to let you know how it’s going.
As we enter the middle of September, I love seeing all the gold supporting childhood cancer. Cancer is an ugly beast that tries to steal everything it can. Not only for the patient, but family and friends of the fighter. It rips away strength, energy, joy, time, laughter, patience, money, relationships and even hope. It is hard to watch your loved one suffer and struggle, but it is heartbreaking when you have to watch your child be poked, hooked up to numerous machines, vomit violently because of their medicines, cry in pain and whither away to almost nothing. And all you can do is watch, praying the pain will subside, the vomiting will stop and their strength is regained.
For over a year, Mallorie has been able to live a “almost” normal life. With the exceptions of her daily oral medicines, weekly blood draws and methotrexate shot, monthly IV chemo and quarterly spinals, she is finally able to be a 13 year old. She has not been hospitalized in over a year. She struggles often with headaches and upset stomach, but to look at her, you might not even be able to tell she is being treated for leukemia. Her hair is still thin, but is slowly growing. Unless she wears a swim suit, you can’t see her port scar. And you would only notice her moaning and sluggishness she has after a full day if you were here at bed time.
Even with all the good we are experiencing in our journey, I am troubled. I am troubled because I find myself forgetting what she went through in those early months of treatment. The long, sleepless nights. Constant worry and fear of what was going to happen next. The endless hospital stays. All the tears. I can’t help but think, how can I help spread awareness of this horrible disease, if I, a mother of a child fighting cancer, can’t even remember our own experience? I don’t want the past 639 days to slip away and become I distant memory, yet I don’t want cancer running our lives. And honestly, it’s not even something I think about every day. Maybe that is normal? I am not sure.
Mallorie’s treatment is broken up in different phases. I don’t have her road map (term used for a treatment plan) in front of me, so I can’t remember all the different phases, but you can be sure they all sucked. She is currently in the maintenance phase and thinking back to when she was first diagnosed, I can remember saying we would never get to the last phase. It seemed so far away. And I can still hear her oncologist saying, “Just take it one day at a time”. And now we only have 29 weeks left of treatment. That’s only 29 more shots, 29 more labs, eight more IV chemo sessions and 2 spinals. That has me pretty freaking stoked.
Last Saturday, I was connected to with a mom who’s son was diagnosed with leukemia in June. We chatted on-line with me sharing Mallorie’s story, me reading her son’s story, her asking me questions and me sharing our experiences. It was one of those moments where you just know your journey has meaning and purpose. I remember being the one on the other side of the chat. The one who was up all hours of the night researching and worrying. Even though leukemia isn’t always on my mind, when I do think back and relive our experience, emotions come flooding in. I experience the pain, sorrow, and worry. I can smell the hospital. I start to feel my body ache from lack of sleep, roller coaster emotions and remember how for months I functioned on auto pilot. But in the same breath, I sense the warmth, love and prayers so many people provided. (And let’s not forget Joni’s scones!) And now, I get to be someone that gives support. That is a priceless gift I do not ever want to lose or take for granted.
Before I became a “cancer mom”, which I think is a legit term, I never concerned myself with kiddos who were ill. Of course, I would give to causes that were brought to my attention, but I never lost any sleep over it. I would feel sad and even thankful that all my kids were healthy, but not once did I put myself in the parent’s shoes. I simply would go about my life, striving to be the perfect little family with no issues. Oh how Dec 15, 2013 changed me. Not only did Mallorie’s diagnoses slap me in the face on how precious life is, but it opened my eyes to how freaking messed up we are. Not just in the form of cancer, but in life as a whole. The things I would stress over and put as the priority where simply things that fade. We are blessed and I know this. I get to hug my daughter (all my kids) every single day. Many parents are not so lucky. Cancer and other illness have taken their precious gift and they only have memories to hold. I have no idea the pain and loss a parent feels over losing a child, nor do I ever want too. But I have seen the fear in a mother’s eyes and witnessed the agonizing pain of a child gone way to soon. That alone is unbearable.
One in 330 children will be diagnosed with cancer before they are 20 years old. That may not seem like a big number, but what if your child was that “one”? I sure didn’t think any of my children would get cancer. Awareness is crucial to ending this horrible disease. As I close this post, since September is Childhood Cancer Awareness month, I just ask you to take a moment and pray for the kids and their families that are dealing with cancer. Don’t just pray for the child, pray for the parents and siblings. Pray for the grandparents, caregivers, aunts and uncles. Everyone in the family has to cope with the ugly monster. In showing support of Childhood Cancer, it’s not too late to wear gold at least one day this month. If you do, we would love for you to show us. If you have FaceBook, you can like our Team Mallorie page and post a picture of you sporting your gold. It doesn’t have to be a cancer shirt, just something gold. The link below should direct you to our page. You can also follow Team Mallorie on Twitter where we periodically share information on childhood cancer and other random things. Usually whatever Mallorie tells me to post. So yes, it can be random. LOL!
Thank you for reading and may your day be blessed.
My last post I wrote about my daughter, Mallorie, who is fighting leukemia. It has been the focus of my days, but this morning I was thinking of all the blessings I have. Even though Mallorie is sick and it sucks, I have five other children who are well and are doing some amazing things.I have three step-children. Robbie, Kaysee and Andrea. They are adults, but still bring much joy to our home. Robbie and his wife, Amy, are expecting their first child in January. I am so excited to meetmy granddaughter. They live in Oklahoma, where Robbie is stationed for the Air force. I am so proud of the adults they have become.
Kaysee is a blessing to me. She has this bubbly smile and precious attitude. She is currently going to college and works as a nanny. She and her boyfriend, Tyler, are doing well out on their own. It is wonderful to see your children soar.
Andrea is our spunky child. She will come over and visit before her college classes and we look forward to seeing her bright smile and hearing her stories. She is always laughing. Just thinking about her smile is making me smile as I type this. All three of them have touched my life. They pretty much rock!
Madison is my oldest child. She is 14 years-old and was the foundation that brought me to where I am today. Before I got pregnant with her, I had no direction in my life. I wasn’t going to college and had no plan for my future. But the moment I found out I was going to have a baby, something changed and I have never been the same. She is a freshman in high school, a great student and cheerleader. Her smile can light up a room. She is beautiful.
Then there is Logan. He is four and he knows he is the baby of all his siblings. Mallorie and Logan are best friends. He is so full of energy and life. He keeps me on my toes and brings a smile to my heart. He attends preschool and loves Skylanders. For only being four, he is so caring and kind. And his laugh is contagious.
I know I say it all the time, but I am blessed beyond measure. I read this tweet today from @God_Loved, “You have to get your mind going in a new direction because dwelling on negative thoughts will keep you from becoming all God has for you.” I choose to focus on all the positive things in my life, because as I discovered it is too short. Mallorie’s illness is important and serious, but there is so much more to focus on. The other children in our family our striving and doing great things. And I need to keep my focus on them as well because there is so much more to my story.
I close with this scripture. “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a change to grow.” James 1:2-3.