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

Saturday, October 17, 2015

Dear First Responders,


I know many times you know nothing about your patients when they roll through your doors, or the outcome after their discharge. I wanted to thank you for the excellent care my husband received when he was a patient this spring....... from my point of view as a wife. 

Thank you for all you do from the bottom of my heart. I know you are overworked and under appreciated. Words are not adequate to thank you, but here goes....

April 11, 2015.....It was opening day at our community ballpark. My oldest son, Kohen, loves baseball. We were excited about the new season. Some of the parents decided to play a game that evening. Zack decided to suit up and play ball. 

A few minutes after I arrived at the park, he walked off the field and towards me........ "I don't feel so good.....I think I hurt my arms when I was up to bat, "he said. He very pale and diaphoretic. Then he heaved as if to vomit....... Time stood still........my mind began to race.....part of me was stunned and in disbelief.......another part of me suspected he was having a heart attack.  But, that makes NO sense. He had no cardiac history and had never had ANY chest pain or other cardiac symptoms. Zack was very calm, I was calm....... everyone was very cool and collected as we waited for the ambulance to arrive.

I followed the ambulance and when I arrived at the hospital, I was immediately greeted by the patient rep and escorted to another room. Then.......I began to  PANIC 😖😬 a bit,  on the inside. I was not sure what to think............

Everything was happening so quickly.....The rep took me to see him, the MD then informed me he has was INDEED having a massive heart attack and he was going to the cath lab ASAP.

There were so many staff members in the room scurrying around. The only faces I remember seeing are those the doctor, the patient rep, and that of my husband.

One minute we were enjoying a nice night at the park and the next, my husband was telling me there was some cash in his truck at the park "in case anything happened." He had 100% occlusion of his LAD (a major coronary artery known as the widow maker) and some less severe blockages on the front side of the heart. Dr. Laney eventually concluded that most likely scenario was a piece of plaque ruptured while he was playing ball and caused the occlusion.

I truly believe that everything happens for a reason. God was TRULY watching over us that day in so many ways. Zack was at the park with plenty of people and not somewhere alone. We reacted quickly and he received immediate medical attention. He received excellent care from everyone involved; the fire department,  HEMSI, and the Huntsville Hospital staff. 


Since that day, there have been some major lifestyle changes. Zack, in his own words," has gone from 21 cheeseburgers a week to 2. He has made some huge changes in his diet. He recently graduated from a cardiac rehab exercise program. His cholesterol is now114. He is not only as good as new, but better. We are so blessed and thankful that he is! 

He is many things to many people. He is a high school sweetheart turned husband to me, father to our two boys Kohen and Caleb, and our spoiled rotten dog, Lacy,  the only living son of his parents, a quiet, easy going friend, a hunting and fishing buddy, owner of a small family business.......

Again, I wanted to thank you all for the amazing care he received that day. Also....to let you know a little bit about whose life you saved that day and that he is doing great. 
 

Forever grateful, 
Alicia James

 


 
 
 
 
 

Sunday, September 14, 2014

She is Redeemed

She Revolution 2014

These past few days, I have been totally wrecked and undone. SHE (Seeking His Embrace) Revolution, the annual women's conference at my church, was this weekend. This year's theme was, "She is Redeemed."

Words cannot begin to describe how truly life changing, encouraging, healing, and refreshing this weekend was for me. I may give it a shot after I have some time to absorb it all. It was like the whole conference was tailor made just for me. For now though, I simply want to share some pearls of wisdom from the speakers.........



Pearls of Wisdom

Jeanne Mayo

"Right choices eventually bring right emotions."

"A man or woman wrapped up in themselves makes a very small package."

"What you cry for today you may cry about tomorrow." 


Holly Wagner

"Your past can help give someone a future."

Sean Smith

"You gotta know the difference between being knocked down and knocked out."

"It's one thing for you to have emotions. It's another things for your emotions to have you." 






Monday, June 17, 2013

LHS class of 1993 20 Year Class Reunion



Looking back over the festivities of my 20 year class reunion brings a lot of thoughts and emotions to the surface. Seeing everyone was surreal! Many people I have kept in touch with and remained close friends with. Others, I had not seen in 20 years and connected with for the first time! How did we not hang out in school?......... I wondered. I am  thankful for relationships maintained and those that are just beginning.

Preparing for this reunion involved many meetings, emails, texts, phone calls, google searches, and SO much more. A lot of time and effort went into the process of planning the festivities. I truly enjoyed our meetings and getting to know those that I did not from high school better.  We had a ton of laughs and fun pulling this event together. We met for over a year searching for classmates, brainstorming, planning, organizing, and publicizing, and finalizing every last detail. 

There are many  things you can put a price tag on......2 tickets to the 20 year reunion $100,  Chicos black maxi dress $99, Earth sandals $0.04, pedicure $40, new earrings and that cute bracelet $9.99. 


However, the most important ones are the ones that money cannot buy..........having your best friends help you shop and look your best, the sales clerk at Chicos ringing up your entire purchase 50 percent off, your husband spending Father's Day weekend at your class reunion with not one complaint, creating new memories while reliving past ones, seeing old friends and creating new relationships, watching classmates smile, catch up with one another, and enjoy themselves......now that is PRICELESS