Heading in to work on this cold dreary day, I am struggling and feel terrible. I grab my care package of cough drops, Kleenex, cold medicine, and possibly a little chocolate, swing by McDonald's for some oatmeal, and then on towards the medical district. I pull in the parking lot, wishing I was home in my pj’s, but something happened as soon as my badge hit that time clock. My burden felt a little bit lighter. I had a sense of relief, comfort, and security. You see on days like today, I KNOW THAT I KNOW I can count on you all to help me get through the day. The feeling of knowing I am surrounded by people who genuinely care means SO much to me. You guys show me love, acceptance, and respect. That means so much more to me than you can EVER truly know.
Many of us have worked together for years. We have celebrated life’s joys and special occasions together. We have also stood alongside one another in dark and difficult times. When my Dad died unexpectedly, you guys were there. Also more recently, you were there when my entire world turned upside down as Caleb’s knee pain became a cancer diagnosis with a treatment plan of two and a half years. I was such a wreck for so long. I tried really not take my emotions out on anyone and just stay quiet on the days I was upset.. I was at work when a fellow St. Jude parent called to tell me little Hattie, Caleb’s friend we met in Memphis who is a precious 4-year-old with rhabdomyosarcoma had relapsed. There was nothing more they could do, You let me ugly cry, comforted me, and got someone to drive me home.
You were also there when I got the call from Make A Wish letting me new know Caleb’s wish to meet Mike Trout was going to be granted. I was overcome with emotion, and you all had no idea if I was happy or sad. You were SO excited for Caleb to celebrate the NO MO CHEMO and the adventures that await him now that treatment is completed.
What a HUGE blessing you all are to to me. Thank you for all you do. No matter if it is listening to me vent, playing with my hair, not asking what is wrong as I try to hold the tears back, grabbing me lunch as you get yours, or paging on the overhead speaker because I have no voice. For all the little things you do that make my life a little easier on days like today...... I just wanted to say thanks. I love and appreciate you guys so VERY VERY much! Love
Caleb got a good report today. Labs were GREAT!!! 🙌🏼🙌🏼🙌🏼🙌🏼I wasn’t concerned, but it’s always a huge relief to “see the numbers”. The day was full of appointments including testing for research to study the long term effects of chemotherapy.
I am so thankful that he is doing SO well! The treatment has been long and difficult at times.
Overall, he has done AMAZING with treatment!
Especially for a kid his age (I think at least so). He was a month shy of his 5th birthday when he was diagnosed. A Friday afternoon at the pediatrician he with knee pain and fever turned into a parent's nightmare. Monday he was diagnosed with Acute Lymphoblastic Luekemia. Tuesday morning at the crack of dawn we left home and headed West for St. Jude in Memphis leaving our other son behind with my mom having no clue what lied ahead. It all happened so quickly and was extremely hard to process. You just press on.....to the that next appointment
Initially he was in Memphis for 50 days of induction therapy, the most intense phase of treatment. The goal of induction is to achieve remission as fast as possible without killing you.
This was followed by 6 weeks of high dose methotrexate therapy and finally 120 weekly of maintenance therapy. I will never forget how stunned I was when they told me treatment was going to be 2 1/2 to 3 years. He was 4. That was longer than he had been alive I thought to myself. By his 5th birthday rolled around he was on day 38 and settled in at Ronald McDonald House.
Initially he VERY resistant to everything. He had to be restrained for medicine three times a day. He is STRONG. It was really difficult with two people to get meds down him. You really needed three people. One to hold him, one to keep his head still and keep his mouth closed so he wouldn't spit it out, and one to give the medicine. Then there was the port access. After some time though he surrendered his will and was complaint. He learned to take pills, could rock a port access, and hardly EVER complained. He has been a CHAMP throughout and we are so proud of him! Thankful does not even begin to describe how it feels to have this behind us.
Still though, with all of that being said, I am still extremely frustrated with the current treatments available. Side effects can be cruel and last a lifetime. Most children in treatment that die are from the side effects of the treatment and not the disease itself. The science is beginning to discover how to treat cancers with immunotherapy which is wonderful. Change and new treatments need to be studied and take time.....and of course money.
SO blessed to be a patient at St. Jude and to have an affiliate in our own town. That is HUGE. There are only 8 affiliate clinics. I never once had any doubt he was getting the BEST care! The staff is AMAZING! In addition to the clinical staff there are child life specialist, psychology services, Therapies to help during treatment include physical, occupational, music, pet, and art therapy. We get THE BEST treatment, a place to stay, food and so much more no costs. They simply bill our insurance. If patient does not have insurance, treatment is at no costs. I CANNOT imagine having to worry about finding and paying for hotels alone, much less all the other details that make this ride a little less bumpy that they assist with. They truly try and do all they can to care for the family as well as the patient. At home here in Huntsville, our affiliate office send us for date nights, family weekend getaways, sibling night, hosts a Christmas a party and much more. St. Jude truly saved my child’s life. I will be forever grateful. Before it’s opening in the 1960’s ALL (leukemia) , the most common childhood cancer had a 4% survival rate and a median life span of three months. A death sentence. This place is absolutely AMAZING! I pray nobody you know ever needs St Jude (chances are they will though) it has been a source of comfort, support, and healing for our family. Forever grateful to Danny Thomas for his dream and vision! Thank you will never think enough!
With all of that being said, I am still extremely frustrated with the current treatments available. Towards the end of the appointment, we had to discuss late and long term side effects of chemo and relapse. Side effects can be cruel and last a lifetime. Most children in treatment that die it is from the the treatment and not the disease itself. The science is beginning to discover how to treat cancers with immuno and gene therapy. Change and new treatments need to be studied and take time, research, clinical trials.....and of course money. Next month is Childhood Cancer Awareness month. Change begins with awareness. New treatments have the potential to revolutionize medicine. It is is exciting and the hopes are high to treat many illnesses and diseases including cancer without the use of harsh chemotherapy. Next month, if you are able, please do something to support awareness for childhood cancer. There are many ways to help other than donating money. Go gold, update your profile pictures on social media, speak up for kids with cancer, attend a local events that supports childhood cancer. There are several in the area. If you are a parent of a child with cancer or a survivor, share your story. Every two minutes a child is diagnosed with cancer. That means 25,000 kids around the world will hear the words “you have cancer” this month alone.
This is the kind of week it’s been...... Leaving home when a funeral procession passes before I can turn out of the subdivision. After they pass, I turn and seeing several police cars on Bob Wade. At first glance, I think they are from the procession, which is not the case. The police are there to tend to yet another terrible car accident on a rainy day on this dangerous road. I have driven past similar scenes on this road WAY too many times lately. I pray it wasn’t another fatality and that everyone involved is ok. I continued on down the street on my way to the funeral of a dear childhood friend’s sister, Christa, is being held on this drizzly rainy Saturday.
I digress. Christa’s service was very touching. She impacted SO many lives in many ways. A mother to two beautiful girls, a daughter to John and Debbie, a big sister to Nikki, a teacher to many young hearts and minds, and a friend to many. During the service, letters were read that her closest childhood friends had written. Letters full of memories of childhood and friendship. The kind of friendships where friends become family........ kind of friendships.
The letters reminded me of the friendships I had growing up. Nikki, Christa’s younger sister, was part of that group of friends. The preteens girl group that rotated houses for slumber parties. Parties that were full of late night giggles, pizza, and prank calls. The letters also said how they wished they had not left life get in the way. Christa’s friends expressed regret for not staying closer and making more time for one another over the years.
At this moment, I am sitting here thinking about how hard it was for them to write those letters............ What would I say about my friends if I was asked to write a letter for their funeral? What would my friends say about me if they wrote a letter for my funeral? Do my friends all know how much they mean to me and know they are loved?! ♥️ I try to make sure and tell them. But do they really know though? Do they know I am sincere when I say "I love you?".......... This week has totally wrecked my heart! Praying for the many families that have lost loved ones this week. My heart can’t seem make sense of any of it. The lesson I keep hearing through it all .........(that I must still need to learn) is.......HOW SHORT LIFE TRULY IS.
"Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
Philippians 4:6-7 NLT
I miss the old me.......The memories.........they cut like a knife. Looking back at the pictures from the time since Caleb diagnosis is overwhelming to me at times. So many emotions, some happy and proud, but mostly sad. Facebook is THE worst because I’m never really prepared for it. Some days I think maybe I should just skip social media altogether. But it that just avoiding feeling all the emotions I still have bottled up inside? I already avoid going out in public as much as possible on most days. I quit going to church. At first it was for safety reasons and still is sometimes, but if I am being honest I have extreme anxiety going out anywhere there will be people that I know. The last time I was somewhere where there were several people I knew, I left in tears from feeling overwhelmed and anxious by all the questions, looks, etc. I even saw a friend from high school in the hospital cafeteria recently. My initial thought was to run up hug him and say hello, but then I caught myself........I hadn’t seen him in a long time. I wasn’t sure if he knew about Caleb and I didn’t feel like talking about it or getting all emotional in the cafeteria. So, I stayed in my seat and said nothing which is SO not me. At least the me before cancer came into my life.
Caleb is doing so well and we have come so far. It is SO amazing and I am so thankful. Still though, it truly breaks my heart though to see the pictures of him so happy and carefree before chemo and counts rocked our world. It makes me sad to know we will never be that carefree again. Kids are resilant. I am sure Caleb will be But for myself.......I used to be so laid back, but his diagnosis has me in a constant state of underlying uneasiness, anxiety, feeling terribly guilty feel because I feel like I should be handling this better, the emotions that just some days take over without warning, the sadness that a huge piece of my Caleb’s childhood has been stolen and is now full of medicines, port accesses, appointments, trips to Memphis. Most decisions are made through my new cancer tinted glasses.......things factor in like........ how many people will be there, what are his counts this week etc, how he is feeling, is there something he can eat safely etc. Cancer has totally retrained my brain and I don’t like it!
I’m just having a moment...........I miss the old me. She visits, but she can’t ever seem to stay as long as I wish.
My heart is so so very heavy today. A couple of my dear friends have had some very hard days this week.
I would like to share with you all a little about my sweet friend Sherri. I can still remember the first time I met her, like it was yesterday. We had an instant connection. It was like we had been friends for years. I have SO enjoyed working with and getting to know her over the years. We have had lots and lots of laughs! There is still an open debate about whose laugh is louder in our clinic...mine or hers.........I admittedly have quite the cackle, but I think Sherri’s takes the cake.
God placed her in my life for a reason. I wouldn’t fully know that reason (and still may not) until Caleb was diagnosed. I have always sensed we met for a reason though. I can still remember feeling anxious that it was going to upset her when she found out Caleb had cancer. .You see Sherri’s beautiful daughter, Lindsey, battled cancer and gained her wings before I met Sherri. I SO wish I had been able to meet her. I love hearing Lindsey stories and the way her eyes light up when she talks about her. Sherri is my only close friend that knew me before cancer overtook my life who has traveled this road ahead of me. She stays on my mind so much since Caleb's diagnosis, especially our first days in Memphis. She gets it......all of it! I hate that she gets it! Just like I know she hates it that I am have been dealt this card. I try really hard to hide if I am upset because I feel guilty. I don’t want to upset her either. She is SO strong! She struggles and sometimes people don’t understand her and that’s ok. It’s not their journey. To me she is an amazing, strong, beautiful soul. I am so thankful for our friendship. She is a blessing to me. Today marks the anniversary of Lindsey’s healing in heaven.
Those of you who have been following Caleb’s journey undoubtedly know about my sweet sassy friend Hattie that I met at Ronald Mcdonald House. Yesterday was her 5th birthday and first birthday in heaven.
I cannot begin to imagine what these precious parents are going through. Please say an extra prayer for them today as these are difficult days for them. I would like to also like to encourage you to not sweat the small stuff. In the end, none of it really matters. Be kinder than necessary, you never know what people are walking through. If you see something beautiful in someone, tell them. Always tell people how much they mean to you and how you feel about them. In the end, it’s the things we don’t say and the chances we don’t take that haunt us. Life is short.
Sitting here with just my thoughts and a cup of coffee this morning. Today and every Monday is a chemo day for us. Childhood Cancer is never far very from my mind. September is childhood cancer awareness month........which I didn't even know existed until last year. I have had a crash course in ALL and pediatric cancer this year. The
more I learn, the more my heart breaks. Now I am starting to become
angry. Not even angry that my child has cancer. I believe there must be a
purpose for his journey and we are doing all we can to support him along
the way. I try to be his advocate, mom, and caregiver to the best of my
ability. Some days are harder than others, but he is a trooper and I try
to be as well. What can be helped though........and what I am angry about is
how little funding, research, and attention childhood cancer receives. I
don't think it truly has a face until it touches someone you
know........ someone close to you. It didn't for me. I am not going to preach, educate, or
a go on a rant.
I digress....there are tons of events in our area this month recognizing childhood cancer. On a recent visit to the clinic, the staff approached me about Caleb participating in an event, Eli's Block Party. At the event, I met the family of Eli Williams, including his younger brother named Caleb. I knew that Eli had a long fight against, Medulloblastoma, an aggressive brain cancer and that he loved cars but not much else. What I didn't know was that Eli's battle ended so recently......... August 5, 2017. Barely over a month ago. What I saw at that event was a community of car lovers who were supporting this family, the memory their son, and coming together for a good cause. It was truly touching. Today my thoughts are with Eli and his family and all the other children whose lives have been touched by childhood cancer. Here are some of the faces of childhood cancer in our area that have earned their wings since Caleb was diagnosed.
It's NOT rare! Please help spread awareness and help support childhood cancer research. Wear a shirt, tell someones story, attend an event, run a race, donate where your money MATTERS.......to organizations like St. Jude and non profits organized by parents where the money truly goes to kids.
"If you have healthy kids be thankful......help families that don't have healthy kids." Carrow McClendon mother of Kayleigh age 7, who battled DIPG for 6 months.
Eli Williams #forever12
12/3/04-8/5/17
Medulloblastoma
Hattie Williams #hopeforhattie
1/18/13-3/23/17
Rhabodomyosarcoma
Little Hattie I met at St Jude. That little girl stole my heart with her sass, her love of pink, and ALL things girly. After being in remission from an aggressive RMS, Hattie began having headaches and relapsed in March.
Samuel Harmon
7/13/2007-9/30/16
B cell Acute Lymphoblastic Leukemia
Sam had the same type of leukemia Caleb. He died from complications related to chemotherapy. We were just beginning our journey and were in Memphis the same time as Sam. His mother Christie and I attended the same high school.
Leah Siebert
12/1/98-8/30/17
Rhabodomyosarcoma
Leah had just graduated high school. She was a cheerleader and loved softball. In her own words, "I love cows, cats, the color yellow, a guy named Trace, a girl named Emma, and my child named Molly." Leah was diagnosed with RMS when she was 15.
DIPG is a devastating aggresive brain tumor. The median survival time is 9 months from diagnosis. There is currently no effective treatment and the diagnosis is terminal Kayleigh fought DIPG for 6 months. She loved softball and the color purple. Many have followed Kayleigh's story through her mom, Carrow's, blog http://prayersforkayleigh.com/
Kayleigh' parents talking abour her story and their love of St. Jude.
Six months ago today Caleb had just been diagnosed with leukemia and we were in route to St Jude in Memphis. What a journey it has been. Six short months......yet at times it seems like a lifetime, while other times it seems like only yesterday. Six months ago our whole world changed. We have changed. Our lives went from revolving around juggling two boys and their ball schedules to........Memphis, cancer, chemo, counts, and roadmaps for treatment. There have been many lessons, blessings, heartaches, hugs, and tears too. I try hard to focus on the positive and the blessings. Some days though, my emotions get the better of me. Our marriage is stronger. Zack and I have learned ALOT about teamwork, priorities, and celebrating each and every victory no matter how small. We have learned that life is short.......eat the cake, take the trip, buy the shoes. What are you waiting for?
While I was the strong one while we were in Memphis, I have had a much harder time since being home and adjusting to a this "new normal". I REALLY dislike that term. There is NOTHING normal about having a child with a life threatening illness. Emotionally it is draining me trying to be cancer mom, nurse, wife, and mom to Kohen. It takes all that I have some days to make it through the day with a smile on my face and I still feel it's not good enough. Since we have been home, I have been very reclusive. This is mainly due to it being cold and flu season to protect Caleb's fragile immune system. I must be honest and admit this has changed me as well. Some days I am fine. Others days I have social anxiety, my emotions are raw and fragile, and I am easily upset. I am very social by nature and pray this gets better as time passes. So if I see you out and don't speak, it is not you, it's me. Please don't take it personal. Some days I have a really hard time being around others and talking to people. I say all that to make the point that now Zack is the strong one, and I am the one who is struggling. I have had to rely on Zack and God like never before.
Caleb has completed reinduction one and will be heading back to Memphis next month for reinduction two. Then 108 more weeks of treatment. The journey is long and the climb steep, but I am certain the view from the top will be most precious. God prepared me well for the journey. Even in the darkest moments, He has never left me. We are SO thankful for how well Caleb is doing. I am very grateful that he has the type of cancer that he does. He has done relatively well with treatment. He has only had one fever, minimal setbacks, and tolerated chemo fairly well. We are looking forward to spring and all the warmth and beauty that comes with it. Caleb had his first ball practice last week and is SO excited about playing ball! I'm pretty excited too!
We feel so blessed and thankful. Although this journey is very hard and painful at times we feel very loved. There are also many beautiful moments and blessing along the way! Thank you for all the love, prayers, concern, and support for our brave little leukemia warrior and the rest of our family! We appreciate you more than you will ever know. Love, Alicia
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."
