Bj's Blessings

04/12/2023

I'm not sure who all follows here that aren't on my personal page but it has been awhile since I have posted an update on Bj. Maintenance has not been as easy as his team initially felt it would be. When these kids start maintenance most start oral chemo at 100%. Bj is in the 4th cycle and he is all the way down to 25%. They have had to lower his chemo because he hasn't been able to maintain counts. They have also had to add Allpurinol a medication to help his liver metabolize one of the chemos. He has had several holds, 4 blood transfusions and when he gets large bruises he is developing a hematoma under the skin. Every step of the way Bj has overcome complication after complication so I'm not surprised. Our only hope and prayer is that none of this means a bad outcome for his future. All we can do now is continue to push on and fight the good fight. Thank you for your prayers for our son. They are seen and felt. 💛🎗🧡

02/10/2023

Day 5 of 5 in the clinic. This is his very last day of nelerabine 🙏☝️. You are one step closer to getting that chocolate 🥮 bubba. We love you very much. Mom and Dad 🧡🧡

🧡🎗💛

02/09/2023

Day 4 of 5 days in the clinic. This is his very last round of nelerabine. So thankful he is almost done with this part of the battle. Is that light I see peeking through 👁
🧡🎗💛




Rachel Carrethers

01/19/2023

Bj has had a rough couple of weeks trying to recover from RSV. Now we are on a Chemo hold. His hemoglobin is lower than it has ever been at 5.6 so off to get blood he goes. We are praying that next week we are on an upswing instead of a down swing. Prayers appreciated. 🧡🎗💛

12/15/2022

I Hope

I hope you never have to hear the words,“Your child has cancer.”

I hope you never have to hear,“The prognosis is not good.”

I hope you never have to prepare for your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, or be connected to IV poles. Look at you with fear in their eyes and say,“Don’t worry Mommy, everything will be okay.”

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the “cure” you pray for slowly take away their identity, as they lose their hair, become skeletal, swell up from steroids, develop severe acne, become barely or unable to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay, Mommy”

I hope you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, “There is nothing more we can do.”

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald and scarred. And they look at you with faith in their eyes and say, “It’s going to be okay, Mommy.”

I hope you never have to face the few friends that have stuck beside you and hear them say,“Thank God that is over with,”…because you know it never will be. Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to“normal”. While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…“The cancer has returned” or “The tumor is growing” And your friends become even fewer.

I hope you never have to experience any of these things…

Because…only then…Will you understand…

Author: Carol Baan

12/14/2022

🧡🧡🙏🙏🙏. There is HOPE.

A teenager in the UK has become the first person to be treated with a revolutionary new gene editing therapy. The patient's incurable leukemia was effectively cleared using "base-edited" immune T-cells from a donor.

12/10/2022

It's a hard thing to stick around day after day and week after week but if you do I promise it's a gift the family will never forget because this road is so lonely and isolating.

12/09/2022

Sometimes I sit here for hours typing and erasing my post over and over. The anxiety and stress that cancer causes is second to none.

We have already been on this battle for over a year and we still have 2 years to go, here are a few things I find helpful to acknowledge:

1. While fighting cancer it might be the last thing to kill you.

2. Sometimes your tribe looks different than you though it would.

3. Things that used to be important feel very trivial.

4. Seeing people go about their life while you and yours are being swallowed alive makes you want to burn the world down.

5. Sometimes you wish someone would call, text, knock on the door because cancer ghosting is a real thing.

6. It is truly amazing how much a parent can bend before breaking.

7. Hugs are underrated.

8. You realize you never knew that chemo really can change who your child is especially if given during pivotal years.

9. Seeing your almost grown baby love cry in your arms more than he smiles makes life start to grow dimmer and dimmer.

10. And there are definitely worse things than death.

🧡🎗💛

12/07/2022

It is really a rough time around our house right now, Bj is really struggling, mentally, emotionally because the physical battle is really a small part of it all. Please pray for him...pray for us all. 🧡🎗💛

12/02/2022

Mom here: I don't normally struggle sharing my feelings but to any teen going through the cancer battle that is struggling half as bad as Bj is mentally and emotionally I just want to say I am so so sorry. To the parents watching your child struggle I see you. You are not alone on this path and I am always here if you want to talk. My CK is struggling more than I know how to describe. He is giving up, he doesn't feel worthy of life or healing. The battles that teens go through are unmatched. My heart is breaking. 💔

11/29/2022

Update on Bj:

Thursday he will start his 3rd round/phase of Maintenance. We are waiting to get the results back from when he was wearing the heart monitor for 4 weeks, he will have an Ommaya tap, 5 days of steroids, and vincristine. At the beginning of November he did his 2nd of 3 rounds of 5 days of nelerabine. He will do the 3rd and final round in 3 months. He still takes daily 6MP and Methotrexate every Thursday.

Right before Thanksgiving he had to have a blood transfusion which isn't common in maintenance but does happen.

The biggest hurdle right now is Bj is not able to eat much of anything. It has been almost 2 weeks since Bj has eaten a meal. Most days he will have a few bites but that's about it.

We appreciate you all. Remember to count your Blessings. 🧡🎗💛

11/21/2022

Our reality: As we enter this week of Thanksgiving, in these storms, its hard to find anything to be thankful for about with our reality BUT we have to be intentional about finding the good in being thankful. I'm thankful for our son being able to get the necessary care he desperately needs such as in these times for blood. For those who give blood, please know you are helping keep our son alive so THANK YOU. I'm grateful for God continuing to not only sustain his life but also his siblings. Words Of Wisdom: Count your blessings because I know we sure are daily.

🧡🧡🎗🎗❤❤