I’m going to try to be as thorough as possible about everything that’s happened with Jade over the past month—but it’s a lot. 

 

The short version: 
after extensive testing (and re-testing), her team believes her pain is coming from neuropathy and inflammation. It’s finally being managed with Lyrica and Celebrex. 

 

If you want the full story: 

On 3/31, Jade went in for Day 1 of her 6th maintenance cycle—something she has done five times before. This includes a lumbar puncture with methotrexate, vincristine through her port, a 5-day steroid pulse, and her daily oral chemo. 

 

However, after that day, something changed. 

 

Jade has not been herself since 3/31. She went from her normal baseline to being unable to function—spending almost all her time in bed. She described severe, full-body pain and extreme fatigue. Nothing we tried at home (Tylenol, Motrin, oxy) made any difference at all. I thought it was her CMV (mono like virus) reactivating, because it popped up as active on 3/31 but continued to downward trend so that didn’t explain what was going on. 

 

I called her team daily because something clearly wasn’t right. We went to the ER twice and to clinic visits. Tests kept coming back “normal”—but Jade was not okay. 

 

After 15 days of this, she was admitted for a bone marrow biopsy and a full repeat workup. Thankfully, everything came back clear again—except for her iron overload, which we already knew about. She has an excess of iron because of all the transfusions (over 50 RBC) she received at the beginning of her diagnosis. She is also already predisposed to iron overload as she has a mild form of hemochromatosis. The combination of these factors have once again made her situation quite unique. 

 

Her ferritin level is extremely high (around 3,200, when normal is closer to 20). Because it was the only major abnormal finding, they started chelation therapy to remove the excess iron. An MRI this week showed significant iron buildup in her liver, as well as in her spleen, lymph nodes, and bone marrow—thankfully not in her heart or pancreas. 

 

Chelation therapy will take months to years to bring her levels down and comes with its own side effects, so it will be closely monitored. She was also started on Celebrex to help with inflammation related to the iron overload. 

 

Beyond that, her team has been incredibly thorough—testing for autoimmune diseases, endocrine disorders, viral and bacterial infections, and running every panel we could think of. 

 

The hardest part has been her pain. It was so severe that nothing touched it—Tylenol, ibuprofen, oxy, Toradol, gabapentin, Dilaudid, even ketamine. 

 

Palliative care has been such a gift in helping manage this. They recommended switching from gabapentin to Lyrica, and that finally made a difference. Not immediately or dramatically—but enough to show that this is nerve pain. 

 

Nerve pain is hard for an 11-year-old to describe, but once we saw a response to Lyrica, it helped explain why nothing else was working. After adjusting the dose, Jade is finally getting some relief. 

 

At this point, it seems likely that the vincristine she received on 3/31 affected her differently this time. She has had mild neuropathy from it before (mainly in her jaw), but nothing even close to this. 

 

While her pain is now more manageable, the Lyrica causes significant drowsiness. She is extremely tired and still mostly in bed—but she’s thankful for the relief from the pain. (She’s at a 6 compared to a 9 on a pain scale).

 

Please continue praying that we can keep moving in the right direction and that she’ll soon be back up, active, and enjoying life with her friends again.