Not really sure where to start… 

I’ll start with a positive. Jade is looking and feeling good. I can see some leg muscles developing and she is just the cutest and most stylish little girl ever! 

On the other side of things…. She has some things going on that just have me feeling kinda overwhelmed by everything so this will be a lot… I don’t understand all of the details quite yet myself but I’ll do my best to relay the information I have about everything going on with Jade.

This week Jade was scheduled for two appointments, both of which she will be under anesthesia. Monday, she had an MRI of her liver but she was terrified of the MRI so she chose to be sedated. She had to be intubated for this procedure and woke up freaking out because she has such a tight airway and the tube really bothered her throat. 

If you’ve been following along.. you know her liver has been a huge concern of mine for months now. We know it suffered damage from chemo and before her meds we adjusted and things were figured out damage was done. We’ve tried different tests to figure out the extent of the damage without being too invasive, we opted for an MRI of the liver. Well… let’s just say in my opinion we made the wrong decision. The results posted last night and instead of feeling like we know more information, I’m left more confused than ever…. Basically the MRI did not give any information regarding the extent of fibrosis of the liver but the report stated “Loss of signal intensity on all phases of imaging within the hepatic and splenic parenchyma as  well as the marrow suggestive of reticuloendothelial deposition of iron.”

Basically the MRI could not get clear information from her liver, spleen, or marrow because she has iron overload. 

I’m not sure if you remember how many times Jade was transfused with blood to keep her alive while she was going through intense rounds of chemo to kill the cancer, but it was more than most. Close to 50 bags of blood in a year. She has had so many bags of blood that her body is full of iron. And there are only two options to help her get this iron out. One is not an option for her because it requires Jade to go through a process similar to donating blood, called phlebotomy. But Jade is not strong enough to do that because it would leave her anemic. The other option is chelation. This is a therapy that helps the body get rid of an overload of toxins or iron. Like everything else it has pros and cons. Pros being it brings her ferritin level down. Cons being it’s hard on organs, like kidneys and liver. 

As soon as that report came in at 11pm last night, I was immediately messaging her liver doctor because I just felt overwhelmed and confused because we really didn’t get anymore information on the liver itself and she told me that the people that did the MRI pretty much went rogue and didn’t do the procedures she ordered which would have given us much more information. She now wants to go ahead and go through with the liver biopsy because it will given us precise information… like how much iron Jade’s liver is holding and how much scaring Jades liver has endured. That will likely take place next week.

Jade’s current week is not over yet though… Thursday is Day 1 of Maintenance cycle 3. On day one she gets vincristine through her port and will be put to sleep again for a Lumbar Puncture with chemo in her spine, and pentamidine(which helps her not to get pneumonia). 

Our little girl… she’s so happy. So full of life. So excited for everyday. You’d never know the things she goes through on a Monday but smiling on a Tuesday. Keep on praying for Jade 🤍