Saturday, March 3, 2018

A moment 

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. 


Friday, January 19, 2018

On my heart today...........








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. 











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Monday, September 18, 2017

Going Gold for September 🎗🎗🎗




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.






To learn more about Eli and his foundation:


https://www.elisblockparty.org/eli-s-block-party


https://www.youtube.com/embed/Jy_006kDLaw


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.









Kayleigh McClendon
5/13/09-11/15/16
DIPG Diffuse Intrinsic Pontine Glioma

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.

https://youtu.be/QQ71rUeHRoE







Monday, March 13, 2017

Six months in.......

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."

Romans 8:28 NLT


Sunday, November 20, 2016

All Things New

“I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.””
Revelation 21:5



It is amazing what you can see when you look at something with fresh eyes and a renewed perspective.

For example,  yesterday I went on a tour of Butler High School, which has been purchased by my church. I was amazed walking through the campus. I got a snapshot of the vision for the building as the Rock Family Worship Center. I am so blessed to be a part of a church that has a heart for our city. As the tour came to a close, Pastor Rusty and Leisa gathered everyone in the gym which will be the sanctuary and shared the vision of a school now empty and abandoned into something new that will be used to His glory. I was touched as we watched a video of a former student talk about how much the school meant to them. I'm excited for the possibilities that the new campus brings and SO thankful for this new season. 




Sunday, October 30, 2016

Thoughts on being a parent of a child recently diagnosed with cancer




It was late afternoon on September 11. Caleb has been admitted to Huntsville Hospital a couple of days prior with knee pain and a fever. His initial diagnosis was osteomyelitis. The plan was to have a PICC line placed and have three months of IV antibiotic therapy. My biggest concerns at the time were that we might miss our fall break beach trip and whether he was going to be able to go to school with a PICC line. 
I


Caleb and I were napping when the hospitalist woke me up and said something like this......"I want to give you a minute to prepare yourself.....The oncologist is on his way to speak with you, it is malignant, and you need to go ahead and call your husband to come to the hospital."  WOW!  That was a lot to wake up to and process in a couple of minutes. I called Zack, who had lots of questions to which I had no answers. I went into nurse mom mode with my notebook and pen. 

We then met with a team which included the hospitalist, pediatric oncologist, social worker, and child life specialist. They told us Caleb had B cell acute lymphoblastic leukemia and that we would be leaving for St. Jude's via ambulance the next morning at 4 am. We would be there for 6-8 weeks, and his entire treatment course would run about three years. 
Since then, many of you have been following our journey. We have been here in Memphis for about 7 weeks now. God prepared me for this journey.  I had just gotten home from an evening session of women's conference and heard this message from Pastor Leisa: The Rock Family Worship Center Leisa Nelson 9/8/16  I called the next morning and got an appointment at 1:30 with the pediatrician. I went to the morning session of the conference  and heard this amazing message from Keela Craft: The Rock Family Worship Center Keela Craft 9/9/16
 
I knew the message was for me and that I was about to walk a difficult path.  Little did I know how soon it would begin. The Lord continues to give me the grace to walk this journey. I could NOT do this by myself. 
The love and support have been overwhelming. We have had people organize fundraisers, design a t-shirt, and create a Go Fund Me account to help with expenses.  Some have sent cards, gift cards, and many gifts for Caleb and myself. Several people have asked what they can do to help with things at home and with Kohen.   Can you help????  Of course, although it is hard to even think and verbalize what we might need.  We have a Caring Bridge site in addition to a Facebook group that we may use to help communicate these needs and give updates on his progress.   
Please don’t think of me as rude or ungrateful if you have not yet received a text or card thanking you for a gift or money that you have sent. I have not tackled this task yet, but we really do appreciate everyone's kindness. I am keeping a list and will get there eventually. If you are worried you sent something and it hasn't made it to us, please text or email me. I only have one package I know of that has been lost so far. 

Can you visit here in Memphis or when we come home? ABSOLUTELY! We love seeing familiar faces! I miss everyone so much!!! I only ask that you MUST have had your flu shot and not be sick though. We will be home for 10 days once Caleb's labs are stable and then repeat the 24 hour infusion of methotrexate her in Memohis three times and then the majority of his treatment can be finished at the St Jude affiliate office in Huntsville.


Answering question is hard..........especially ones about the future. We are in a day-by-day mindset. If I get too far ahead of that, it is very overwhelming!  He has a three year treatment course. I can only take it as it comes without becoming anxious and overwhelmed. 


I understand that sometimes people don't know what to say, but trying to relate and compare my child's situation to your co-worker's brother's wife that died of their cancer is NOT helpful. Unless you have had a child with cancer (particularly a preschool aged child), you have NO idea what this is like. On the other hand, I appreciate stories about kids who beat childhood cancer and are grown and doing great 30 years later.  I also appreciate when people share what’s going on in their lives as well. Even though cancer does rule my life right now, I still want to be able to support those whom I love.  
Acknowledging Caleb's struggle and facing it head on is how I roll.  When a child is diagnosed with cancer, the whole family fights together. We have tried to keep things as "normal" as possible for Kohen, and he has done great!  While everyone is different, I bet every parent would agree that having support from others provides strength. Showing that you care, either in actions or words, is a powerful way to help a family with cancer.  We love and appreciate you all, and we continue to ask for you to lift us up in prayer.

Love,
Alicia







Friday, September 16, 2016

The James Gang goes to St Jude's




What began as some knee pain quickly became a whirlwind. Caleb had been complaining of intermittent knee pain for about a week. He began to limp and then would not bare weight on his left leg. He then spiked a temp. I called the next day and got him an appointment with the pediatrician for that afternoon.  

The annual women's conference at my church was the following day.  The morning session was AMAZING and I knew that the message was for me and that I was about to walk down a very difficult road. Little did I know how soon the journey would began. 

I took Caleb to the doctor that afternoon. From there he was sent to the ER and admitted. The initial diagnosis was thought to be osteomyelitis. After further testing, he has been diagnosed with B cell Acute Lymphoblastic Leukemia. We were then transferred to St Jude's in Memphis. We had an amazing escort, Sammy, that entertained Caleb the whole way here. Once at St Jude's we discovered the leukemia is also in his bone marrow and spinal fluid. 

We will be here for the initially for an 8 week course of treatment known as the induction phase. The doctors say the first twenty one days of treatment are the worst. He will be receiving oral, intravenous, and intrathecal (spinal canal) chemotherapy. He will have to have at least 27 spinal taps. His entire treatment course will run two and a half years to three years. 

This is going to be a long difficult journey for our family. We covet your prayers. We are taking it ONE day at time ONE, and ONE drug at time. 

http://www.caringbridge.org/visit/calebhjames/

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.”

Philippians 4:6 NLT