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.
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