Wednesday, July 27, 2016

Appointments & Surgery

I wanted to post an update since Macy has had a few appointments recently and a surgery scheduled for tomorrow (maybe if her counts aren't too low). We have been lucky that this string of appointments are the first ones since March!! Not having any medical appointments for 3 months feels like eons, and it was great while it lasted. 

First up was Nephrology. Macy only has 1 kidney, and it's on her right side. For this appointment she gets an ultrasound then we meet with her Dr. after. Her kidney is looking really good. No signs of tumors, and it's growing and functioning well. As she gets older we have been able to increase the time in between appointments. She was up to every 9-12 months. But we can now push them out to every 2 years. Yeah!

Second was her Hematology/Oncology appt. She gets blood draws for this every 3 months. Every other blood draw is in addition to an appointment and every other appointment includes a bone marrow biopsy to check for signs of leukemia, pre-leukemia, and cellularity. Her counts came back lower than I would have liked, but she has been this low before. All we can do is wait to see if it will remain at these levels or continue to drop. 
WBC 5,710 <~~~I'm good with that since normal is 6,000+
ANC 850 <~~~getting a little lower than what I'm comfortable with since normal is 1500+ and Macy usually sits around 1,000 
Platelets 41,000<~~~also getting lower than what I'm comfortable with since normal is 150,000+ and Macy use to be around 50,000-70,000 this past year. 

Third appointment was Dentist. For those with Fanconi Anemia, dental visits are medical appointments. Even though most of the focus on FA is the blood disease/bone marrow failure part there is SO MUCH MORE that this disease encompasses. Cancer is a huge part of this disease. It's not a "cancer may happen someday" It's a "if I live past the bone marrow failure portion of this disease then I WILL get cancer...and young." One of the highest rates of cancer with FA patients is Head and Neck Squamous Cell Carcinoma. This a fast spreading and deadly form of cancer that starts in the oral cavity. So dental health is ESSENTIAL for Macy. We went and saw 'Finding Dory' in the theater about a month ago and Macy lost her first tooth in the middle of the movie! She was so excited (it had been loose for a few months). She was happy to show her tooth hole to the Dentist. She said Macy's 6 year molars are about half in. So at her next appt we will discuss putting sealants on them to protect them. 

Fourth appointment was with her G tube surgeon. We haven't been there in 4 years, and Macy's G tube was removed about 17 months ago. But recently it has been bleeding on and off so we brought her in. Her Dr. recommended he go in and close it surgically. So he will separate her stomach from the outer wall then close her stomach and the outside separately. This surgery is scheduled for tomorrow. Since her counts are low her hematologist wanted her to get her blood work today to make sure her counts are good enough to do the surgery tomorrow. 

Her Dr. office just called and her platelets are the same as before around 40,000. But her ANC has dropped to 400. <~~~~That's not a good number. What is worrisome is her ANC usually only gets that low when she is sick and she is not showing symptoms of being sick. No fever or anything. An ANC under 500 is critical. Any fever requires hospitalization and IV antibiotics to prevent sepsis, etc. If Macy got the surgery and developed an infection it would be serious. They are going to do a manual count (since it is usually a bit higher and more accurate than the automated one) and will call back after consulting with Macy's hematologist. But my guess is her surgery is going to need to be canceled tomorrow. It's not a pressing surgery so there's no reason to take unnecessary risks. 

So that's all the appointments for now. We are in the process of getting Macy to an eye specialist. She recently told us she sees red and green dots everywhere so I'm guessing she may need glasses. She also failed her hearing test that was given to her the last week at school. She goes for an ENT follow up in August so I will give him the paperwork then. She was just in in Feb and March and had her hearing tested with the ENT after her tubes were put in and it was fine, so I'm guessing the one at school was inaccurate. She tends to get a lot of ear wax build up, and her ear canal in the right side is very narrow due to her FA. But we will follow up none the less. 

I hope everyone is enjoying summer! ☀️

Take care,


  1. Oh Jen, so much for you all to go through...I hope precious Macy's counts will start to rise and it's just a "flukey" kind of thing. When I saw you all at Kelli and Tim's, to see her run around and play you would never know anything was wrong with your little angel...she is so brave. Lots of love and prayers coming your way, as always.