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Positive Scans are the Best Birthday Present Ever!!

Updated: Apr 27, 2023

The BEST PRESENT this, now, 2 1/2 year old could receive were our most recent PET and MRI Results!! 🎂   

To catch those of you up who have missed our most recent journey of life… My son, Whitten John was diagnosed with a rare form of cancer, called Langerhans cell histiocytosis when he was 20 months old. The first two forms of chemotherapy were ineffective and five new tumors presented. We started an aggressive chemotherapy after four months called Clofarabine. This is a Treatment that will be given to him over the course of 12 months. after 10 treatments and two months, the results were showing positive progress.

We did 20 additional treatments over the course of four months and just last week he had another set of. This includes going under anesthesia, going NPO a.k.a., not eating or drinking, which is challenging for an infant with diabetes insipidus (or for most of us, let's be honest…) and getting x-rays, PET, scan, MRI, CAT scan over the course of a few hours. It is a stressful long, tiring day, but it's part of our medical journey in order to be able to successfully assess what's going on in his body and brain.

SO LET'S MOVE TO THE GOOD NEWS! after four days of anxiously, waiting and organizing communication between our specialists in Texas, and are doctors in Denver we have results!

The five new tumors that had formed are GONE!! They do not present on any imaging, and there are no holes in the bones visible!!

Are we originally discovered the disease through the tumors in his skull. They did not reach his brain so basically they were eating at his bone. While there is still a hole in his skull, it is healing and getting smaller and smaller! The most exciting news is that there was NO UPTAKE ... the uptake is what shows the malignancy, so this is a demonstration of no active cancer present!

The pituitary is most likely permanently damaged, which is why he has arginine vasopressin deficiency (or Diabetes Insisipidus) It looks the same as it has been. We can pray for miracles in a pituitary healing down the road! It is an extreme rarity, but it has happened a couple times before.

Finally, he had a very large tumor in his iliac crest or hip bone. before diagnosis we had noticed that he was limping, but we couldn't understand why. There is a large hole where the cancer has eaten at this area but the good news is there was almost no uptake (extreme minimal amount that could even just be regular activity) and the bone is starting to fill in. Again, this will take time.

All in all, this is absolutely incredible news! HIS BODY IS HEALING !!!

So I are we still going to chemotherapy??

This cancer is a rare beast. Whittens is caused my a gene mutation… which means we not only want to kill the culprits if the current tumors but also try to get the root cause.  He needs to do 6 more months of chemo in order to have the best chances of not having a reoccurrence. his specialist has discovered that children who do 12 full months of clothes therapy, and have approximately only a 10 to 15% chance of reoccurrence!

But one of the beautiful things with this is that Instead of doing 5 chemo infusions a week, he only has to do TWO!!!  We just went from a road map of 30 treatments down to 12!!!!!!

Happy 2 and a half my little warrior. You are healthy. You are strong. You are tenacious .  You are smart.  You are patient. You are loving.


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