I often think of those 2 words as the least used words in my vocabulary in conjunction with one another.
Great News! Hahahaha!
Yah, those words are like big foot around here. Never seen and seemingly impossible to be real.
So, how in 2 weeks time could Bailynn be showered with “Good News”? No, “Great News!”. Not once, TWICE!
Have the winds changed?
Kristi, did you burn that field of sage in our honor??? No really? Did you!?
Last week we made our, unforgettable, trip to Cincy. Traffic, wrecks, evacuation off a HWY, long appointments, tests and home. Normal trip. It is the phone call the next day that took me off guard.
As many of you know from reading my updates, Bai has large and significant AML’s in her kidneys from her Tuberous Sclerosis. If you are new, Bai has large and significant AML’s in her kidneys. No really. This is how they are described, “The largest one in her left kidney, that is also littered with many smaller ones, is roughly the size of a LIME!” You should know that the “smaller ones” are described as the size of a walnut. (Why food I ask you? A discussion for another time.) And remember Bai is only 55lbs and not 5foot tall. She is tiny for all these huge things growing in her.
The size of the AMLs has never improved. They are always growing and invading every inch of her kidneys. Despite this, Bai’s kidneys function remarkably well. We have to take precautions to keep them safe, due to their state, but most doctors are baffled by their ability to work after seeing them in scans and then running labs.
Last Thursday was my father-in-law’s and my cousin’s (we were raised like sisters) birthday. Who knew their day would bring the first phone call, in the history of Bailynn, that contained – GOOD NEWS! You may throw your hand to your forehead, or hands to your checks, in disbelief, it’s cool. I felt that way too.
I had to go read the report in her my chart for it to really sink in. The next few lines are a game changer:
RENAL SCAN REPORT:
KIDNEYS AND URETERS: Many fat-containing lesions are present throughout both kidneys, replacing much of the normal renal parenchyma. Small flecks of calcification are also present scattered about both kidneys.
The largest lesion on the left in the lower pole measures 4.4 x 4.5 cm in the axial plane
(previously 6.3 x 7.1 cm).
Ok, you read that right. The most significant AML in Bai’s left kidney S H R U N K!!!! WHAT!??!??!?!?!
The Nurse practitioner called to give me the news. She was blown away. Bai has not been on medication (rapamune) for a year and half. The medication is suppose to maintain and/or shrink the AMLs, but Bai had to stop taking it for procedures/surgeries to be done. This worried Bob and I. We knew the risk of taking her off the meds when her kidneys were bad and needed it.
Rapamune (or Sirilimous) is a hard drug. It weakens your immune system. Makes your body not heal as great. You know, good things. We stopped going to public places in the winter. We guarded Bailynn like a broken butterfly. DON’T BE SICK AROUND BAI! I wanted to scream! The medicine is a lot, but it did improve (not shrink) her tumor growth and activity.
No Meds – SHRUNK! Can’t be. How?! I have been dreading this scan because she wasn’t on meds – THEY SHRUNK! I’m sorry. I won the lottery last Thursday. I got news that I never thought I would ever get. Improvement. No, Bai isn’t going to be cured. That’s ok. I do however want her to have a quality of life that only comes from these dumb things STOPPING!
The NP asked if we had made any changes to Bai’s daily life over the last couple of years. I actually had an answer for this. Bai is on a full vegan organic diet. She has only been on this diet for a few years. She was still doing dairy, with no meat. Taking dairy out of her diet improved her GI issues, skin, seizure activity and so much more. So diet. Then I also told the NP that there are a ton of people out there in the world that love Bailynn and pray for her every day.
You. You pray for her and I can’t thank you enough.
So, she’s a vegan and people love her and pray for her. We have cured TS (haha, not really, but Bai is benefiting).
This still hasn’t had time to absorb. They don’t believe it is worth the risk of the medicine to go back on it. Never in my life would I think someone would say that about Bailynn Hammonds. She may not need the meds for TS. Wow.
Then I get a phone call yesterday……….(I keep saying something bad is going to happen to balance this all out – Kristi, quick, burn another field!) ……….COLLAGEN IS APPROVED!!!!!! Bai gets it done on December 18th (Happy birthday dad! Your granddaughter gets collagen!)!!!!
I can’t take much more good news lol! I don’t know how to handle it!
I’m soaking it up while I can. The next trip to the doctor may not have the same delight, but right now, I am going enjoy a round of good news – a change in the wind.