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 then began to limp. He would not bare l 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.  

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

That afternoon I took him to our pediatrician’a office. 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

LHS class of 1993 20 Year Class Reunion

6-24-2013

Looking back over the festivities of my 20 year class reunion brings a lot of thoughts and emotions to the surface. Seeing everyone was SO 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 friendships  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 for 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 have a great time, catch up, and enjoy themselves......now that is PRICELESS! 

Open Letter to my Work Family

Dear Work Family,

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

Alicia your sickly struggling sister 

Mondays and Memphis.....a look back

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.

👫👭 Friendship and Loss 👬👫

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

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. 

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.