Life is tough my darling, but so are you

Life is tough my darling, but so are you. Stephanie Bennett-Henry

You never know how tough and strong you can be until you have a sick child. You want to run and hide. You get angry. You scream. You cry. You feel helpless. You feel fear. You don’t understand all the big medical words.

Confusion sets in. You feel small, helpless, weak.

You fall to your knees. You look to the sky. You pray.

You find strength. You find hope. You find understanding. You find peace.

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Goodbye Cancer. Hello Anxiety.

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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.

She Just Kept Swimming. The Final Chapter Of The Team Mallorie Story.

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For three years I have been thinking of the time I would be able to write this post. As much as I love words and creative writing, nothing I say here will ever show my love and appreciation for the support we had during Mallorie’s illness. It’s finally over and my heart is still moved by the compassion so many brought to our family.

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It is time to close the chapter on Miss Mallorie’s cancer journey and move on. I am a strong believer in moving on when the time is right. Now is that time. But as our family moves on to a cancer free life, we will not forget the journey, because the journey made us stronger.

The first text I made when Mallorie was in the hospital that night was to Daniel and Rachel Mahannah. I wanted to let Daniel, my boss at the time, know I was not going to make it into work that next day. His wife, Rachel, called me immediately (she is a nurse). She is so smart. She was asking me questions that I had no idea how to answer because we weren’t 100 percent sure what was going on at that time. She comforted and prayed for me. Even though I was afraid, I had peace.

Some of the early times of Mallorie’s diagnoses are sort of a blur. So I know I am going to be leaving some really good stuff and people out. So forgive me. But besides all the support of family, there was a group of dear friends that were always there for me. Becky, Amy, Megan West, Megan Hopper, Tami, Tanya and Brad.

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I have been trying to think of ways to let them know I still think about their kindness, prayers and support to this day. Having them come to the hospital day in and day out to bring us food, a good laugh, NERF guns, hugs and support can’t be justified by words. They took time out of their busy schedules (Megan and Brad West about to pop with her first child) to make sure we were ok. Guys, I can’t thank you enough for everything you’ve done for Mallorie and I (and Madison). You are a blessing and your hearts are so big. Your kindness will never be forgotten. 

crosshairsThank you Crosshair Press for the book Overcomers. Thank you for using your talents to help our family. 

I do believe there are people brought into your life to just love you. That is Rick and Carla Siler. Rob and I have known these two amazing people for many years. I have always been fond of Rick and Carla, but when Mallorie got sick, these two were immediately up at the hospital and their kindness and blessings to our family is unmeasurable. Rick and Carla, I love you both so much. Thank you. 

The Ritter and Sandy Ledbetter were another family that went above and beyond the call of duty shirtsduring our journey. From bringing Mallorie a Christmas tree to brighten her spirits, to managing a t-shirt drive to help with medical expenses. This family is one I treasure. Ritters and Sandy, you all are amazing. You helped us in more ways than you could ever realize. Our appreciation goes deeper than that Christmas tree. Thank you for everything. And thank you Harris family for bringing ornaments, smiles, and hugs. 

And Hairwe can’t forget all the peeps who shaved their heads in honor of Mallorie. Let’s see if I can remember everyone. Glen, David, Kristin, Bryan. I am sure I am forgetting someone. What an honor and Mallorie was so tickled. Thank you. 

 

Jonie Miller gets a shout out for our Zumba fundraiser. Mallorie was to sick to attend, but it was a blast. Oh and the “homemade” scones. I need you to make me some more of those. You know you’re my favorite Mrs. Lady! Hugs! Jonie

During our many, many hospital stays, we got to know the nurses on the Wesley Peds and Peds Sedation floor like family. These guys are true angels because they see the absolute worst. If it wasn’t for the peds team, I am not sure what we would do. From the grumpiness, tears, cries of pain, to great listeners, sharing laughter and someone to talk to in the middle of the night, these women and men are the lifeline to recovery. Thank you for being wonderful. We shared this journey together. I will never forget the old beach scene room. You rock! 

Thank you Angela Sailsbury and family for putting together the best 5K in the history of 5K’s. 

The WIRE was a big part of Mallorie’s life at the time of diagnoses. We can’t forget the awesome support she received from her church family. Now tWIREhese students are going to be freshmen! Thank you WIRE and WIRE Small Group Leaders for your prayers and support. 

 

 

Thank you, Connor Richardson for shoveling our driveway when Mallorie was sick that first winter. You are such a sweetheart and a great friend to Mallorie. 

danielMy NewSpring family. During my absence taking care of Mallorie, running her to appointments, chemo and labs. You were supportive and made sure we were taken care of. I know my absences created more work for others and I am forever grateful for the grace and kindness I was shown. 

I started a Team Mallorie Facebook page so family members could keep up with Mallorie’s treatment. I was overwhelmed by the support. Team Mallorie has over 3,700 followers. And these followers were hardcore when it came to support. At one point, we received so many messages, I couldn’t keep up. So to our Facebook friends, thank you for sharing and liking her story. Your prayers were a tremendous inspiration and definitely felt. God bless. 

baileyBailey Bean, thank you for staying by Mallorie’s side during her hospital stays. I can remember you missing school to come to spinals and surgeries. And when you would come over and just sit with Mallorie while she slept and had no energy to do anything. What a true friend you are and we love you! 

 

And who could forget Jake Stemo?Jake and Mallorie His single “Making Me New” helped Team Mallorie in so many ways. Jake and Micah, thank you for sharing your love of Jesus and music. It was an inspiration to our family. I listen to that song from time to time and I still feel warmth, love and peace. You both truly make my heart smile. 

I have to give Richard Sawyer some props. He prayed and asked about Mallorie almost every day. Thank you, Richard, for being a man of God and caring so much for our family. 

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Thank you to all who came and visited during Mal’s hospital stays. The stuff animals, blankets, hats, toys, coloring books, iTunes gift cards, food, prayers, and hugs were so appreciated. 

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One challenge Mallorie had was missing so much school. I can’t thank Andover Middle School enough for how they worked with us to make sure Mallorie stayed caught up. The teachers and staff are one of a kind. It is an honor to have our kids part of this school district. School

We had so many organizations reach out to us during this journey. I can’t begin to name them all, but we are grateful for the love and support.LLSTo all the people who donated hair in honor of Mallorie, thank you. 

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Now to my outstanding family.

Rob was the glue that held our family together. He kept the fRob and Malort afloat when I was at the hospital. I wish he knew how badly I ached to be at home, but couldn’t bare to leave Mallorie most days. Rob, thank you from the bottom of my heart for being amazing behind the scenes. You kept the laundry up, food on the table, cats fed, Logan bathed, and always had a warm hug waiting when we would come home. I love you memeXOXI! 

Mom, thank you for taking off work and spending time with Mal overnight while she was in the hospital. I know it was hard because you lived so far away, but you always brought much-needed relief and love when you came. Thank you for running with me late at night to the store to get Mallorie fruit because she was carving it. Thanks for listening to me vent and share my fears and frustrations. You are my rock. 

papa leeMallorie’s Papa Lee and Debbie would rotate in and out during hospital stays so we could work. Debbie would spend hours taking care of Mal. Thank you both for helping take care of Mallorie. 

Madison, thank you for your patience and staying strong. I know at times you felt like I abandoned you and I am sorry. Thank you for taking Mallorie to labs and helping out while she was sick. Just one more reason you are one amazing young lady. mal and mad

 

For thnanae most part, when I needed time away for the hospital, Kim (Nana) would take the shift. That way I could come home, see the kids and Rob, shower and just try to do some “normal” stuff. Kim has taken Mallorie to labs and chemo appointments. She has been the other half of this adventure. Kim, thank you for stepping up and helping take care of Mallorie. I know you have missed work to take Mal to chemo and hospital stays. Having your help made it so much easier. You should get Nana of the century! 

My dad and Suzie travel a lot doing ministry work. dadBut when they had free time, they were here. They also prayed continually for healing and recovery. Their dedication to pray for Mallorie and our family is the best we could ask for. Dad and Suzie thank you for praying and being there when you could. 

George and Mal

Everything happens for a reason, and I think the reason Papa George retired was to be Mallorie’s chauffeur to chemo. He retired a few months before Mallorie got sick and because of his unselfish love for that girl, he was the one, once she hit the maintenance phase of treatment, pretty much took her to every appointment so we could work. These two have a special bond and I couldn’t think of anyone better to help take care of her. So George, thank you. Thank you for going above and beyond the call of duty. Your help has allowed us to work and provide for our families. And of course, Mallorie loved you taking her to treatment because she always got food afterward. LOL! Seriously, from the bottom of my heart, thank you. 

RosenDr. Rosen was Mallorie’s oncologist. Best there is. He is so patient and kind. I would call him in the middle of the night and ask tons of questions and he would always smile and answer. Dr. Rosen thank you for caring for Mallorie. She is better because of your knowledge and expertise. We are so lucky to have you as a doctor, but also as a friend. 

Kim Rosen, where do I begin? You and Mallorie are so kim rosenclose and I am thankful for your relationship. I can remember in the beginning of treatment, she hated coming in for chemo, but she looked forward to seeing you. You made this experience as fun as it can possibly be. You are also a rock star! 

 

 

brosHere are the two little brothers that missed both their sister and parents when we were taking care of Mallorie. Thanks boys for being troopers. 

 

 

 

As I sit on my couch concluding this chapter, I chuckle because it is the same couch I sat on when I was in despair trying to figure out what this cancer was and how are we going to make it through this?

It’s over. This part of our journey is complete. After I received the news from Dr. Rosen that Mal is healthy, I thanked God for two things. The first was for his love, grace and healing. Second, was for putting the right people in our path to be successful and win this battle.

God had this from the beginning. And from every single person who prayed, supported and treated Mallorie, God had that worked out too.

From the bottom of my heart, thank you. Mallorie’s battle was rough, but not all horrible. She’s stronger. She’s braver. She never gave up. She just kept swimming.

The End.

 

She Made It – A Little Snippet on My Thoughts of Mallorie’s Last Chemo Shot

1510006_747034938705261_5810347543368150990_nI just saw Mallorie’s tweet……”19-hour countdown and then bye bye chemo.”

I have imagined in my head many times what this day would feel like. The day when we no longer have to plan our lives around cancer. And in less than twenty-four hours, Mallorie will receive her last shot of methotrexate.

Emotions are a bit overwhelming at this moment. I think back to the beginning. The beginning of Mal’s journey, our journey. It was so unexpected, this diagnosis the doctors called leukemia. At that time, leukemia seemed like a monster trying to steal from me, my little girl. Now, it’s all gone.

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Mallorie’s battle was one with many twist and turns. Rough, exhausting, painful, and unknown. She lost her hair, she lost weight, she lost strength, but she never lost her spirit. She had good days. She had bad days. She had days she wanted to give up. She had days she told me to not give up.

There were tears. There was laughter. There was anger. There were screams.

Watching Mallorie slowly start to wither away in the early stages of treatment is something I will never forget. Flesh on bones. Shunk in cheeks. Frail and weak. Makes me nauseated just thinking of it. Thankfully, we had a fantastic Oncologist and wonderful nurses.

Speaking of nurses, we were blessed by so many people, but the ones who kept us going were the nurses. They became immediate family. Seeing us at our worst. Giving the meds. Hearing the cries of pain. Lending an ear in the middle of the night. The nurses are heroes.

 

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Days turned to weeks. Weeks turned to months. Months turned to years.

Mallorie got stronger. Her hair came back. (Curly and brown. Before cancer, it was straight and blonde.) She grew. Hospital stays decreased. Lengthly chemo stop. Port came out. Things were semi-normal.

Now, hours away from her getting to ring the bell. I am excited. She did it! We did it! By the grace of God and prayers. By wonders in medicine and skills of our doctors, Mallorie will be heading into her Freshman year cancer free. Mallorie Wall

Just Keep Swimming.

 

You Just Don’t Know How Far You’ve Come Until You See Where You Are Now.

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.

 

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On My Knees

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Have you ever had something scare you that it makes you hit your knees? And by hit your knees, I mean pray? That moment came to me this past week.

As most of you know, I have a daughter with leukemia. Technically I not sure if it is right to say she still has leukemia since she is in remission and has no signs of cancer cells in her blood, but none the less, she is still being treated for this nasty disease. Over Christmas break she started to develop mouth sores, which we have dealt with before, that seemed to be getting progressively worse. She couldn’t eat her favorite mashed potatoes at Christmas dinner or enjoy the candy that filled her stocking.

Even though she was in pain, she was in good spirits and enjoyed the Christmas activities. By evening on Christmas day, I had taken her in to our local ER. (This is not the hospital we go to for chemo.) I figured it was simply a case of mucositis and we would get some magic mouthwash and things would be all good. I was right on the diagnoses.

Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.

The next couple of days were still rough on her. She couldn’t eat and was only sipping water. She also started breaking out with tiny blisters all over her hands and feet. That made me start to think she could have hand, foot and mouth disease. Which seems weird since she is 13. After talking to her oncologist, we took her in to Wesley for some fluids and to have a pediatric doctor check her out. They did some cultures on the sores, gave her some good pain meds and sent her on way.

At this point, I wasn’t really worried about what was going on because her blood counts were good and she wasn’t running any temperature.  After a couple days of the pain meds, she seemed to be doing better. She could eat certain foods and was in a great mood. As we were settling in to watch a movie, that is when we both noticed it. The one thing that scares me to the core. Petechiae.

Petechiae are  small red or purple spots caused by bleeding into the skin.

When Mallorie was diagnosed back in December 2013, what sent us to the ER was petechiae (Which I thought was some type of rash.) on her legs, ankles and feet. And that is where this petechiae was located. I could see the fear in Mal’s eyes and my heart skipped a beat. But I told her that she had nothing to worry about because her counts were good. Inside I was on the verge of a total break down. I immediately thought the cancer was back.

Early the next morning I spoke with the nurse and she recommended that we go get lab work done to just make sure her counts hadn’t dropped since she was dealing with some type of virus. The cultures she had in the ER weren’t growing anything, so I was totally stumped on what was going on. We went and got labs done that morning and waited for the results. Waiting is the worst.

 

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As I was at home trying to keep myself busy, I started thinking about how I haven’t been praying regularly. We all seem to reach out to God when things suck, but when life is going smooth praying can become an after thought. When Mallorie was first diagnosed, I prayed continually. As she got better, prayer ceased some. I didn’t thank God as much. And now that there was a slight possibility that Mal’s cancer could be back, the first place I run is God.

I am so thankful that God is all loving and full of grace. I felt bad at first for praying because I didn’t want him to think I only need him when life gets rough, but he knows my heart and my love for him is true. My shame was instantly removed. He is amazing. He always hears my prayers, knows my fears and dreams. He never leaves us, it is us who turn from him.

Waiting is the worst.

When we got the results I hit my knees again. There were no cancer cells present and everything still looked good. Heck yeah! I was told that petechiae can be present if there is a virus in the body, which she did. I was so filled with joy and relief.

 

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We never found out what was causing Mal’s skin bumps, but all is well. Her mouth sores are gone and she is eating like a champ. This experience is a reminder to me to pray all the time. In the good and the bad. And to thank God every day for all the blessings he gives to me. I need to hit the ground more often.

More Precious Than Gold

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!

Facebook: https://www.facebook.com/Team-Mallorie-571297976278959/timeline/?ref=hl

Twitter: @mallorie_team4

Thank you for reading and may your day be blessed.