Three-year-old Faye was diagnosed with Acute Myeloid Leukemia on April 11, 2011. After 135 days in the hospital, Faye was able to spend 3 years at home. On September 5th 2014 she was told that she had relapsed. She was able to achieve a second remission and had a bone marrow transplant on Oct 17th 2014.

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Thursday, August 25, 2011

Are you ready for this?

First of all I want to say that we have been fever free for about three days now! Nick and I couldn't be more relieved! It's so nerve-racking when they have fever...and we don't want to relive round two again! So we are ecstatic that her fever has gone away! She still has a bit of a cough, but feeling pretty good overall! (as I was typing this up Faye was taking a nap, she woke up coughing and then threw up, she has always had a weak gag reflux.  If she takes to big of bites of food she throws up, but that still doesn't make it anymore fun when it happens) We got taken off contact precautions yesterday and Faye and I couldn't be happier to get out of this room!  At least I could leave the room for a few seconds, but Faye was stuck....and got especially stir crazy! And they were able to do a power flush on her PICC line, which more or less fixed the problem of it being misplaced. So that is also great news!

Being stuck in the room you can only do so much:
Watching TV

Reading magazines


Dress up ( the blanket is her LONG hair)


Manicures (Thanks Katie for being a good sport)


(finished product)


Pretend (we would sit on the feet of her tray table, and this was her steering wheel,
she would drive us to the store)


And coloring!


Then we finally broke out.  This is Faye all dressed up with lots of places to go!
Can't forget to take Duck Bird out on the town!



Like I said, if the cough would leave we would be good to go!

Now onto the "Are You Ready for This" part of my post. As some of you have probably figured out or even heard we decided not to go the route of getting a bone marrow transplant. After many discussions with our doctor, and our doctor discussing Faye and her specific situation with other doctors, we decided that a bone marrow transplant was not the path to follow for Faye! Believe me it was not a decision Nick and I took lightly, nor our doctor! We feel a real sense of peace and comfort with our decision.

After that major decision had been decided we were then given the information that Faye might only get four rounds of chemo rather than getting the five rounds of Chemo. It was something that was brought up before we finished round three, but our doctor said she was still doing some research and trying to figure out what is best for Faye! So that, yet again, gave Nick and I something to think about. When we came back to start round four, the word got out to us that this was going to be our last round. Our doctor was out of town, and we wanted to wait for her to return so we could ask her all our questions. We were nervous to say the least.  We thought: "Why not just do that last round to make sure we have taken all precautions against this cancer coming back".

In discussions with our doctor she told us that based on current studies the fifth round doesn't make much of a difference. It's one of the curses of getting AML.  They still arent quite sure the best way to treat it.  I guess the medical field in general always has research going on, trying to figure out the best way to cure cancer. The study has found that if the cancer was going to come back, it would come back wether you got that fifth round or not! Our doctor also explained that the current protocol treatment for the fifth round involves using higher doses of all of the medicine...so whatever the chemo hasn't killed up to this point, the fifth round would for sure get rid of anything left.  Giving the kids such high doses of medicine sometimes proved fatal.  The fifth round seems to see a much higher frequency of getting the strep mitis infection, which Faye got in the second round and was borderline on being sent down to ICU for a number of days. This infcetion itself is also fatal to many who suffer it in the fifth round. 

So after weighing everything we have decided to put our trust in the knowledge of our doctor, and the many others in the cancer center that concur this is the right path for Faye, and Faye is done with Chemo!  We are just waiting out the lengthy process of her immune system working it's way up, and when that happens we get to go home! Not for a few days, not for a week....but for good!  It has taken a while for this to really sink in. Does it make us nervous? Sure.  Is it crazy to think that living in the hospital is almost over....ABSOLUTELY! We were just getting used to all this! No more jokes of Nick and I having joint custody of our kids! I get the boys on the weekends! And he gets them during the week! No more nannies (friends, grandparents, aunts) at our house (not that this would have been possible without them)!  The diffiuclt thing to swallow is there isn't a proven treatment method that is a gauranteed cure for every kid that has AML, or any cancer, with no risk to the child.  Each has a different set of circumstances, responses, and reactions that affect the course.  We feel very blessed to have such wonderful doctors who are so knowlegeable, well connected, and go the extra mile to look out for Faye's best interest.

After we go home and as soon as her counts get a nice good cushion she will have to get one more bone marrow biopsy to make sure everything looks good!  It sounds like we will be routine visitors at the cancer center clinic for blood work and various other things for the first few months.  After that the visits will be less frequent and in just 5 short years of negative test results we will host a graduation ceremony for Faye to celebrate the move from "in remission" to "cured"!  I am sure it will be difficult to cope with the fears of relapse once we finish but we are just trying to enjoy every moment we have together.  Cancer or no cancer, life is precious.

Time has flown by these past months and I am sure we will have more feelings to share as our time gets closer.  For now,  I wanted to let you all know what is going on. I could keep rambling...so many thoughts, and so many feelings! All we can say right now is Thank You!




19 comments:

Chalisse Martineau said...

I am so happy for you all that Faye is almost done with the hospital life. You and Nick are amazing people! I know that you guys know exactly the right course to go for Faye. Our thoughts and prayers remain with you all.

Cute Carbines said...

I think that the decisions were yours to make and I know you guys made the right decisions for your family. All that matters is that YOU know they are right. You definitely helped us make some as well. I thank you for your strength and help. I love you guys!

Tracy said...

What a blessing it is to know that when we make decisions in this life, we don't have to make them blindly. It is so great to be able to have a confirmation from our Father in Heaven that we are going along with His plan. I am truly happy for you all! You did it Faye!!!!

Sharp Family said...

Oh wow!!! I am so happy for your family and that sweet little girl! I know rhe Lord is blessing you with the peace if mind and comfort that this is the right decision for faye! Yay for no more chemo!!! We will pray for faye that this chapter in your lives will soon be over!!! She sure does deserve it!

Isabel said...

I love the feeling of knowing I am doing the right think; there is not much that can compare! You know is right and you make it happen no matter the adversity! I'm so happy that you guys will be going home soon, and that you have experts around you to calm your fears! I'm doing the happy dance!!!!

Peggy said...

That is such wonderful news! I can't wait for the going home post!

Jessica said...

I am thrilled for you all! It just couldn't help but smile as I read this. I am just so happy for you. I hope all works out and her counts go where they need to go..quickly!!

Eric and Jenny said...

I am so excited and happy for you all to return to normal life again. Try hard not to second guess yourself, I know it would be hard but you followed the spirit and that will never lead you astray.

Love you all, and can't wait for that first post with all of you home!

Dan & Staci said...

Yahoo!!! I am so happy for you guys to get to be home with your sweet family and enjoy being together! We love you guys and you are in our prayers!

Piano Mom said...

Many blessings! First, no more fevers! Now it's just waiting time for counts to come up. Secondly, WOW - YOU'RE LAST ROUND! We did the 5th round, but were told it would only improve 5% of patients. That is so awesome you'll be finished so soon.

I admit, it was so hard to leave our room knowing we wouldn't ever come back. Of course, we were THRILLED to be done, but you just develop a sense of security living there knowing that the cancer is being killed.

We did great for the first 3 months home together. It took that long for things to sink in...for the shock of what we went through to really hit. You live on adrenaline for the months of treatment and then *bam* you're shoved back into real life and it moves waaaay slower.

I think you guys will do great! You are such an amazing family. We hope that things work out for getting Faye a wish through make-a-wish. You need something to look forward too!

Holly said...

Yay!! You're all going to live under one roof again!! So happy for y'all!! I can understand your mixed feelings but it sounds like you're listening to all the right people and impressions. I'm so grateful for the spirit during important decisions like this one. Best wishes and let us know what we can do to help out.

Lark (SparkyLarky)@ Lark's Country Heart said...

PARTY TIME!!! I am so thrilled, I can only imagine all the feelings you are going through.
This is such a blessing! As always your family will continue to be in our prayers and I can not wait to see and hear about the future Faye!

Lori said...

Although I was looking forward to another visit to Texas... I am so happy my help will no longer be needed! I look forward to a visit at a later date when you have all settled back in to normal family life. Whatever normal is. Stay strong miss Faye... it's almost over!!!

Thiago & Teri said...

testing.

Thiago & Teri said...

geez...for some reason I have the hardest time commenting on this blog. Blogger always kicks me out. Just on yours. I don't get it.

Anyways...this is great news. I have been thinking about this since our chat the other day and was wondering what they were going to decide. Sounds like a good, wise decision and I am glad you all feel at peace with it.

Great job to all of you...you made it through. Perfectly.

Lots of love!

Luke Meldrum said...

Wow! Awesome news.

Dallas & Michelle said...

That is such great news! I'm so happy for you guys and for sweet Faye. I can't imagine how hard the past few months have been. You and your family are such an example. Thank you for sharing with us. I love you! And if I can ever do anything to help, you let me know!

Anne H said...

What exciting news! I hope things finish up quickly and well, and everyone is on their way home as soon as possible. <3<3

Mom M said...

Great News! You are such a special family. We will forever be a part of "Team Faye"!