Monday, December 28, 2015

In Memory of Nathan Stewart

I've been wanting to do a post about Nathan for a while now, but wanted to give it a little bit of time.  Many that know the Stewart family know that Macy's Uncle Nathan (Adam's brother) passed away unexpectedly at the end of September. As anyone can imagine it's been a difficult time for Nathan's family and friends.
Macy really loved her Uncle Nathan. "He's soooo silly" she would say. And she always looked forward to seeing him when she went up north.  And when she would do FaceTime she would always want to see Uncle Nathan to say "Hi"!  
You see, Macy is the first and only girl on the Stewart side of the family. Adam only has brothers, and besides Macy we have two boys, and Adam's brother Greg has two boys. When Macy was a baby, and birthdays and Christmas rolled around it kinda left Nathan unsure of what to get a little girl. It was such unfamiliar territory with growing up in a house of boys. So, he came up with a wonderful and generous idea of opening a bank account for her. For each birthday and holiday he put money in there hoping that by the time she was a teenager she would have enough money for a car, or atleast a nice down payment for one. What a great idea, right? What teen wouldn't want that. 
So after Nathan's passing his parents (Macy's grandparents) asked if it would be ok with us if they turned that bank account Nathan had opened for Macy into a Bone Marrow Transplant Fund for her. At his memorial service they would ask in lieu of flowers that if people wanted they could make a donation to her transplant fund in memory of Nathan. They felt that would be what Nathan would have wanted. 

I must say we were honored, humbled, thankful, name it we felt it. I know Diane sent out thank you notes to those who donated, but I also wanted to say Thank You from us as well. There are really no words to express the appreciation and thanks we feel. We are truly so very thankful. And when the time comes for her transplant it will help ease the financial burden of all the costs involved in having a transplant out of state. 

As I looked at my Facebook page today a few memories from this date popped up on it. One was from exactly 4 years ago from Nathan. Macy was diagnosed with Fanconi Anemia in May of that year, and Adam and I were in the process of getting tested to see if we were matches to be her bone marrow donor. This is his post. 
When I saw this tears came immediately. I knew because of this that today would be the appropriate day for this post. And I hope Nathan knows he did...he did raise thousands and we are forever grateful. Thank you Nathan, Macy is so blessed to have had you as an Uncle. You always put others first. We all love you. Rest in peace. 


Wednesday, December 23, 2015


Some of the questions I hear the most about Macy is regarding her transplant. When it's going to be, why we are waiting and not doing it now, what the process is, and what it entails. All great questions that I usually don't have time to really answer in depth when I see someone, so I can do that now.

One thing to keep in mind is Fanconi Anemia is a very rare and complex disease. And the fact that it is so rare makes it that more complex; especially when it comes to treatment options---or lack there of. The bone marrow failure is only one part of the disease, but that's the focus I'll take in this post due to the questions.

At the end of last summer (end of August) Adam, Macy, and I traveled to Minneapolis, MN to meet with her FA Doctor. He is an FA expert, and any time we get the chance to meet with him we do because the man is a genius. I always feel better about Macy having a chance to have a future when we leave his office. He's also one of the top FA researchers in the world; searching for a cure. Being able to sit face to face and talk with him is a truly special thing.

[On a side note: Since FA is so rare most doctors have never heard of it. There are 3 hospitals in the USA that are considered excellence centers for FA, and do transplants for those with FA. They are Sloan-Kettering in New York, Cincinnati Childrens in Ohio, and the University of Minnesota Masonic Childrens Hospital in Minnesota. When Macy was a baby we met with the Minnesota team and connected right away. So we moved forwarded knowing that would be her transplant hospital.]

After reviewing Macy's records her Dr. mentioned her counts seem to be falling faster than the average kiddo with FA. For example, in the last two years her platelets have dropped an average of  almost 100k per year. If possible it is preferred to start the transplant process in early spring to avoid cold and flu season. That can't always be controlled, but if there is some leeway that's the goal.

When it's decided to go to transplant is ultimately different for every child.  There are numerous factors that come into play. For counts they usually will talk about it once platelets get down to about 20k, and the ANC is around 500 or so. (Normal platelets are over 150k and normal ANC is over 1500). There are other blood counts that are important too like Hemoglobin and White Blood Cell count, but platelets and Absolute Neutrophil Count are the main focus. During our meeting last August Macy's platelets were between 40-50k and her ANC about 750. There are many things that affect counts. The more Macy gets sick the quicker they will fall. Some kids's fall faster/slower than others and some fall for a while and remain steady for a while before they start dropping again.  There's really no way to know exactly when this will happen. However, based on where Macy is now, her time is coming sooner than later. It's not like when she was a baby and we could mentally put it off because it would be 5+ years before we had to worry about it. It'll more than likely be in the next 6-18months if I had to guess. There are things that would expedite transplant as well such as if Macy developed leukemia or pre-leukemia or if she started getting serious infections frequently. There are certain things that occur before transplant that can increase mortality rates. These are the things we know for FA kids: 1) if they develop leukemia prior to transplant their chances of survival go down greatly. 2) kids that get blood transfusions prior to transplant have a greater mortality risk. 3) kids that have chronic serious infections prior to transplant have a lower survival rate, 4) kids older than 10 years old at the time of transplant have a greater mortality rate, and 5) kids with an exact sibling matched donor have less complications and a greater chance of survival. 

So why not do the transplant now while she's moderately healthy?
let me say, it's not easy having to sit back and watch your child's health deteriorate until they are close enough to death in order to try and save them. It really sucks big time. But there are reasons for waiting.

One is since FA is so rare, kids with this disease need a highly specialized bone marrow transplant. They can't get a standard one or it will kill them. All three excellence centers I mentioned above use different transplant protocols that are basically still in the trial and error phase. What this translates to is that lots of kids still die. They die during transplant or soon after due to complications relating to transplant. Therefore, you don't want to do it until you have to.
Second, the transplant process comes with over a 1.5 million dollar price tag. Health insurance companies will not cover their part if it's done before they deem it's absolutely needed.
Third, the after effects of transplant are hard on kids. Besides the hair loss, chemo can cause learning disabilities, and sterilization amongst many other things. There are some pretty serious side effects including kidney or liver damage depending on the chemo that is used. FA transplants typically use the kind that is hard in the kidneys. Macy only has 1 kidney so it needs to be monitored very closely. 
Fourth, the twins. I will have to get an apartment close to the hospital for a minimum of 3-4 months. Adam plans to come for the 1st month but will then need to return home to Michigan to go back to work as he is our only source of income. The twins will have to stay home because we cannot take the risk of them exposing Macy during the transplant process. It would be a life and death situation and isn't worth the risk. Right now they just turned two, and I really don't want to leave them when they're this young unless I have to. It'll be really hard on them. 

So basically we need to wait until Macy's immune system is next to nothing, but before she develops leukemia or needs transfusions or starts getting chronic infections. It's not an easy answer, and there is a lot to get in order. 

Right now Macy is getting her peripheral bloodwork every 3 months, and whenever she gets sick. She ended up in the hospital in the end of September and the weekend of Thanksgiving due to extremely high fevers and viruses that her body couldn't fight off, so she was on IV antibiotics. We've also noticed that whenever she gets sick now she gets an ear infection. She's never had ear infections before so we are thinking its from her counts being so low. Her bone marrow biopsy to check for leukemia and to see how many blood cells her marrow is producing is scheduled for January 4th. This will give us a much better picture of how her bone marrow is doing right now. 

Since this is already a pretty long post I will save the transplant process, etc. for another post. 
Wishing everyone a happy and healthy holiday and New Year! 

Take care, Jenn

Wednesday, December 16, 2015

...And we're back

It's been about a year and a half since my last post. I didn't have the heart to delete Macy's blog back then so I left it floating out in cyberspace. :) I did make the book and it turned out great, which is partially the reason I'm back. Macy's transplant is getting closer and things are happening more often with her health these days. I like to document our family life with many pictures and words so I thought this would be the best place to document our family's transplant journey. Or starting now would be pre-transplant journey, I guess.

There are many people I don't see or talk to very often that like to know what's going on with Macy so this will be a good way for those people to keep up to date. And for me to answer questions that have in-depth answers that I usually don't have the time to answer. There will also probably be posts that are more for me (kind of a record-keeping tool) to document our journey. Certain details that may only be important to me, or our family. So instead of using Facebook I decided this would fit me better. That way people can choose if they want to read about it or not, instead of FB newsfeeds getting filled up with updates. And later when I make another book; everything will be in one place.

In the next post when I have more time, I plan to talk about where Macy is healthwise, a tentative timeline for transplant, and to answer the question that I hear often which is: why can't you transplant now? Why wait? (And for my own record keeping close the gap in time on what she's been up to for the last 1.5 years).

Take care,