Macy

Macy

Sunday, November 20, 2016

Transplant

Hi family and friends. Our "some day" has turned into a "today". Macy's counts have reached critical levels, and her Doctor from Minnesota called today telling us it was time.  Macy will be having her bone marrow transplant at the University of Minnesota Masonic Children's Hospital in December or January.  Until then she is in isolation.

Our minds are spinning and it feels like there are a million things we need to do to prepare right now.  We will be there for approximately 3-4 months. Macy is pretty disappointed that we will need to cancel our Disney trip for December, and that she can no longer go to school or dance :(  Its not safe for her to go anymore so we have no choice.  

Most of you on Facebook have received an "invite" to like Macy's page "Macy Against the Marrow Monsters." I'm still trying to figure out how adding a "page" works so please bear with me.  If you are interested in following Macy's transplant journey please "like" the page to see updates.

I will continue updating on Macy's FB page from now on, instead of here.

Take care,
Jenn

Monday, November 14, 2016

Isolation

Macy did end up having her surgery last Monday. We did bloodwork the Saturday before, and her platelets were 31,000 and ANC was 900.  Even though her platelets dropped, her ANC was the highest it has been in over 6 months, so it was a go!

The surgery itself went well. Macy stayed on the couch at home for about 3 days afterwards before she felt good enough to get up and walk around. We let her try a half day of school last Thursday, and she went all day on Friday. She was getting around better. Macy's FA Doctor from Minnesota wanted us to recheck her blood to make sure her counts were holding after surgery.

We checked it this past Saturday, and were really taken back by the results. Her platelets fell to 12,000 and ANC to 340. Just for some perspective on how bad those numbers are...there are many kids who have their bone marrow transplant before their numbers get that low.

Macy has been at home in isolation since we found out. We were sent to get her bloodwork today, and her ANC is still 340, and her platelets 18,000. We know this drop is from the surgery and are expecting them to increase eventually. I'm not sure if they will go back up to what they were, but should go up. When/if her ANC gets back up to 500 she will be able to return to school. Since we can't be around people we have been taking drives, and playing outside away from public areas.

Adam was able to take the boys up north for a few days so I can focus on Macy. I've been watching her close for fever and bleeding.

Her next check is next Monday. We are hoping for better news then.


Take care
Jenn

Friday, November 4, 2016

Surgery

Last summer (in the last post) we ended up having to cancel Macy's stomach surgery because her ANC was too low.  ANC is the 'absolute neutrophil count' which is a special (and very important) type of white blood cell that fights infection.  The typical persons is over 1500, and when they get sick it goes up higher because their body is fighting the infection.  Macy's was 400 the day before her surgery (and she wasn't sick), so we couldn't risk her getting surgery and getting an infection from it. Anything under 500 isn't really high enough for your body to be able to fight it. That's why when Macy gets sick (those with FA's ANC typically goes down when they get sick) and her ANC is under 500 she has to be hospitalized and put on IV antibiotics. 

Over the summer Macy had a few ENT appointments and we found the tubes she got put in her ears in February are not doing anything anymore.  One is coming out already, and the other isn't functional.  (sweet!) So more than likely she will need to get tubes again. Also, due to her FA one of her ear canals is extremely narrow (pretty common in FA kiddos) so she gets a ton of earwax built up in her ear.  It starts to affect her hearing and her speech when this happens so we've been going to the ENT to get her ear wax removed with special equipment he has. 

Macy's counts have continued to drop as well.  I'll have to look back on here to see where they were in my last few posts, but it feels like they are much lower now.  Her typical counts now are in the 30's for her platelets and her ANC has been 600-700. This seems to be her new normal which is putting her within grasp of transplant.  The ideal time for transplant is spring.  This doesn't mean that's when hers will be, but if you had to pick the 'perfect' time of year for it that would be it.  It's the least amount of school missed, and not during cold and flu season. It also makes travel out of state a bit less stressful. She will be getting her next bone marrow biopsy to check for leukemia/pre-leukemic cells, and cellularity (the volume of blood/cells her marrow is actually producing) in the first week of January. This will tell us a lot.

Since her last surgery was canceled Macy's stomach has gotten much worse.  Basically what happened was a year ago from last Feb. (Feb. 2015) we were given the ok by Macy's GI doc and pediatrician to remove her G tube (feeding tube) for good.  We were able to do it at home, and they said in almost all cases it will heal and fully close on it's own. We thought that happened.  We didn't notice any problems with it for about a year. Then last winter/spring once in a while we noticed where it healed on the outside of her body (kinda looks like another belly button) was getting a little bit of blood on it.  It looked like it was getting rubbed and irritated. But it only happened once in a great while, and it was a tiny spot. Then it started happening more and that is when we went into her GI's office and scheduled the surgery originally. Since then it has gotten to the point where it squirts out stomach fluid mixed with blood on a daily basis. It's ruining all of her clothes.  We change the bandage every day, but by the end of the day it leaks through onto her shirt, and she ends up with a wet circle on her shirt that turns black from the gastric juices. I'm not really sure why all of a sudden it's getting like this after being ok for a year.  Maybe it's because of her counts being so low now.  I'm not sure.  But we were able to reschedule her surgery for next Monday, Nov. 7th and I can't wait for it to be over. I just hope she doesn't get sick between now and then. We will get her bloodwork on Saturday to make sure her ANC is 500+ and hopefully we will be good to go. We just need to get through school tomorrow without her getting sick from someone. (please!)

That's most of what has been going on for now which is a good thing. When we start our transplant journey I'll be posting pretty much every day.  Mostly for my own benefit in terms of remembering everything, but also for family and friends to know what is going on as well.  It's difficult to update so many individuals.  It's emotional and takes too much time when you're in the thick of things.  So right now, I'm very thankful I don't need to update that often.

take care,
Jenn
                Emmet (2), Macy (5), and Reece (2)
****Macy has since turned 6 (Sept) and the twins 3 (Oct)

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,
Jenn

Saturday, April 30, 2016

Fanconi Anemia Awareness Day-May 1 2016


This is a picture of our daughter Macy. She's 5, and wants to be a Dentist when she grows up. Macy has a very rare genetic disease called Fanconi Anemia (FA). It's a very complex disease, but in a nutshell her body cannot repair DNA damage. This means every day things she's exposed to (like radiation from the sun, chemicals in clothes/the air, second hand smoke from a passerby, and even the by-products of natural cell turnover in her own body) are killing her. 
Kids with FA usually go into bone marrow failure by the time they reach 10 years old, thus needing a bone marrow transplant. This is NOT a cure. A lot of children with FA do not reach adulthood. Those who survive transplant often get cancer in their teens and 20's that the general population get in their 60's+ . Because they cannot handle high doses of chemo or radiation (meaning it will kill them) needed to fight cancer, they don't have many/if any treatment options. Macy wants to be a Dentist when she grows up. If we don't find a CURE there is a really good chance she won't live long enough to be the age I am today. This is HER reality. This is OUR reality. One of the challenges about "a very rare disease" is since most people have not heard of it it means they are NOT personally affected by it. It means they are NOT emotionally affected by it. It means they DON'T donate money to help find a cure. May 1st is International Fanconi Anemia Awareness Day. Our small group of families from all over the world are asking to please help us find a CURE for FA. Please help Macy have the chance to become a Dentist, or anything else she wants to be. Please take the $10, $5, $1 that you would normally spend today on something that DOESN'T matter, and spend it on something that DOES matter. Because Macy and all the other kids with FA deserve a chance to live. 
♥️ Please go to Fanconi.org and click on the donate button in the upper right-hand corner to donate❤️ OR you can text the word FANCONI to 541-515-7332 and you will be sent a link that brings you to a secure online form to make your donation. If you would like your donation to remain anonymous there is a box you can click that provides that option as well as an option to make your donation in honor of someone (aka: Macy). No donation is too small. All donations are tax deductible. 
Thank you
Jenn

Tuesday, April 12, 2016

April 2016 blood draw

Macy had her bloodwork done last weekend. It was her regularly scheduled draw that is without an appointment. Adam took her Saturday morning, and said she did pretty well. We used the emla cream this time with press n seal to hold it in place. It seemed to work well for her. She picked out a red, plastic, bendy snake as her poke prize. :) 
Her platelets have dropped a lot; pretty much by 50% since January. They are around 40,000. Her other counts look ok (around the same as they usually do these days). She is typically at her worst (in terms of counts) this time of year due to a school year full of exposure and illness. We will see what her June/July counts look like before I start to worry. Hopefully they will atleast hold steady and not go down too much. Looking forward to summer and staying away from large groups of people! 

Take care,
Jenn