What could you learn in 100 days?

Yep that's right, just this last Tuesday Faye hit 100 days in the hospital. Can you believe it? I know we can't. When this all started the idea of being this far into this seemed like forever away. The other day Nick and I were talking, he asked me "has 3 months ever went faster in your whole entire life?" it's so true, three months (now almost four) has flown by, a lot of it is a blur. Coming, going, switching, and just plain trying to survive.
So Nick and I brainstormed a quick list of what 100 days in the hospital will do for you.....
~ "occluded patient side"= cause for lots of IV beeping
~ We could be mistaken, but we are pretty sure the wheels on the blood pressure carts get louder at night.
~ Fevers are no fun
~ The perfect ratio for sno cones is half lime, half cherry
~ We understand more about blood counts than we would like to
~ There is a button in the elevator that says non stop (supposedly when you push it you can just go straight to your floor, Nick saw someone do it one day) He is pretty sure you really need a badge to make that button work, maybe it's just a coincidence that any time he has tried it works.
~ Faye knows that if she asks to be unhooked to take a bath it usually buys her a couple hours of free time.
~ Faye knows where to find the bags to cover her arm to take a bath.
~ We are so used to being around bald kids, that when we go home and go to the park, and people are giving us a look, it takes a minute for it to register that they are looking at Faye.
~ Every Saturday musicians volunteer to perform around the floor. (either singing, playing, groups or solos)
~ The tricks to get Faye to take her medicine are endless
~ We have heard and learned the names too many different medicines
~ I cannot even begin to count the number of times someone has asked Faye if they can "listen to her" (with a stethoscope) I wish we would have kept a tally
~ We get a lot of practice looking at and counting up to the number 36 ( it's how many rooms are on our floor)
~ We figure we have put about 10,000 miles on our car so far just on trips to the hospital
~ Hiding from and trying to scare the nurses never gets old (according to Faye)
~ Pizza Comes on Thursdays
~ Big Love comes on Thursdays
~ If you want to park in garage 12 you have to come in the morning, or in the evening...come middle of the day you can forget it!
~ We have more stores, and driving times memorized, on the route from our home to the hospital than would care to.
~ When they tell you someone is coming to get you in 30 mins for a procedure, that really means and hour...(at least).  Good rule of thumb is to take the time frame they give you and double or triple it for a more realistic number.
~ No one is going to look out for Faye as much as Nick and I are.
~ When there is talk of you going home for a few days, don't ever plan on anything until you are loaded up, and Faye is sitting in the car.....and even then you are not promised a stay home as long as you would like.

That last one is especially true right now.  There has been talk of us getting to go home today but we woke up this morning to non rising counts.  They are holding but they didn't go up from yesterday to today. So we are sitting in here for yet another day. Its okay.  Like we keep saying, as long as she is healthy and happy...we will wait! But hopefully by this weekend we will get to be home for a week again! Then round four here we come!

The other day Faye says "look mom a helmet" I looked up to find this:



Balancing on one foot, while doing her mouthwash.....multitasking is not a problem for this girl!



All the practice riding her bike....first it was no hands, and now she can even carry things while riding along!




Talk to the hand.....is she old enough for this yet? And also as if she doesn't have enough hats.....that is a bowl on her head!



But all in all..being at the hospital for 100 days although no fun, this girl has made the most of it.....



She is the one that keeps us all going!

Fundraiser Footage

THANK YOU SO MUCH EVERYBODY!

No NEWS is GOOD NEWS

I realized we haven't updated this in a while. But just as the title says "no new IS good news" Faye is doing well. Right now her counts are down (she has no immune system) so we just get to hang out till those counts make their way up. She is eating and drinking well, so she gets to be unattached from the IV, except for the occasional platelet, or red blood transfusions.
Every morning at about 5 they come in to draw labs (take blood to see what her counts are) usually Faye is asleep, and doesn't wake up when they do it. But the other morning they went to draw labs, and she sort of pulled her arm away saying "I don't want to be hooked up" not realizing they were just doing labs. When that was explained to her she fell back to sleep.

Every morning we are also given a printout that looks like this:



Nick explained to Faye the other day that the last highlighted number is her ANC (immune system). He explained to her that when that number starts getting bigger she gets to go home for a bit. So now everyday when the nurse brings us our printout Faye grabs it and scans the paper looking for her ANC.



When Faye gets cold her skin looks a little modeled (purply and veiny). When the doctors come in to check on her just like they do everyday they ask if she always looks a little modeled. Because thats something they also look for when she has a fever. Well today she was looking at her skin and asked me "Mom do I look a little Modeled?"


Today she got a visit from Ronald McDonald (Faye just like anyone else who visits would not say anything to him) But he gave her a Happy Meal toy and she thought that was pretty exciting, but other than that wanted nothing to do with him.

So yep we are doing good, everything is going good, and as long as we can keep Faye fever free we will hang out as long as her little body needs us to.

One of the readers of this blog posted on the previous posts comments this story. I was very touched by it, and wanted to post it for the rest of you to read. They said they saw it on another blog, and changed it a little to fit for Fayes situation.

Faye Meldrum "A Very Brave Soul"

Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen? Why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts."

The little soul was confused. "What do you mean?" she asked.

God replied, "Have you noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this −it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer−to unlock this love−to create this miracle−for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With its wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul, I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however, they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. These people are your parents" God and the brave little soul shared a smile and then embraced.

In parting God said, "Do not forget, little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her love and suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys−some regained lost faith−many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened and God was pleased.

The world has been forever changed because Faye is a part of it.

Something to CeLEbrAtE!!!

So much to celebrate over this last weekend. To start it out Faye had a wonderful birthday! The whole day was wonderful, Faye was spoiled and LOVED every minute of it!
She even woke up that morning with a little more normal eyes! The one really swelled up eye went down a bit, while the other eye swelled up a little more. But still she was not bothered by her eyes, and she was not about to let them get her down on her special day. The first thing she said to me when she woke up was "oh mom, we need to tell dad to bring a measuring tape, because I need to see how big 4 is"





Nick, Mitchell, Nixon and Grandma were going to head up later in the afternoon.....Mitchell told Nick "let me see another picture of Fayes eyes, so I don't act surprised or freak out when I really see her".





For her birthday we had an extra lot of dressing up to do! And of course we had to make our way out into the hall, to let everyone know we had a birthday girl on our hands!





Showing me she is unhooked. The nurses and doctors were nice enough to let her break away from her IV cart to party for a bit! It's probably the best present she got!





Here comes Dad....let the partying begin!





"look at all the stuff coming my way"





And of course birthday kisses from Grandma!





When we asked Faye what kind of cake she wanted she told us she wanted one with Sleeping Beauty on it. Nick and I had decided that if she was going to spend her birthday in the hospital we would get her a cake from this little cake shop by our home. The week we were home Nick and I snuck away, left the kids with Grandma and picked out the cake. We then also paid for it. When Nick went to pick it up they said they needed to refund us our money, and that someone had gone in, paid for the cake and wanted to remain anonymous....Nick and I couldn't believe it, we hadn't even really told anyone that we were getting her a cake from there.....such a wonderful surprise! Thank You whoever you are!





The night before Fayes birthday I was decorating her room after she had gone to sleep. She woke up while I was standing on a chair trying to hang things from the ceiling.
"what are you doing?"
"I am decorating your room for your Birthday"
She then looks like she is going to cry.
"Faye do you want me to wait for the morning, and you can help me?"
She then got a great big smile on her face and fell back to sleep.





Quite the haul......(any packages that had come for Faye in the last little bit we also saved....to make the birthday that more exciting!)





It wouldn't be a birthday without Mitchell!





And for her birthday she wanted to feed Nixon a bottle! You can see that she didn't last very long...she was already getting tired of holding the bottle!





Faye also LOVED the birthday video, she has watched it many times, and every part she says is her favorite!





The cake was delicious!





A visit from Some of the Purple Team (they are the team we see every morning and they give us updates and check on Faye) we only think it is fitting that we get to be part of the purple team! The one on the right is Fayes primary oncologist Dr. Margolin...she is fantastic!





Checking to see how big 4 is! 39 1/2 Inches if you were wondering!





After all the partying was done, and we could celebrate the puffy eyes going down, we were also excited to celebrate that the itching has gone down considerably also....because I don't know how much of this her back could have taken!





I was telling Nick I have come full circle. When I was pregnant with Faye I was so ridiculously itchy. I would scratch so much my stomach started to bleed a little, and I was always making Nick scratch my back. Well now I could feel for Nick and Faye! Nick because he would scratch my back for hours....and Faye because there are just places you can't scratch yourself, and starting to bleed! It's all no fun. We sure are glad that is over!

Aunt Katie flew in yesterday, she is spending the week with the boys. We made her wear a mask because she had just gotten off the plane, and who knows what she was carrying with her! You can never be too careful.





Took a quick walk around the halls Daddy style!





It's about time Nurse Katie met Aunt Katie! Nurse Katie was excited to meet Aunt Katie, she thanked her, because of Aunt Katie, Nurse Katie was the first one to break through Fayes shell!





Everything is back to normal......taking care of babies!
Even the baby needs a floppy hat.





Playing with the doctors!





And finally we can see those bright eyes looking back at us!






For all those who worked on, attended and supported the fundraiser on Sat, Thank You, we heard nothing but great things about it, and are truly grateful for all that you did! A simple Thank You just does not seem to do justice for the gratefulness and love we have felt! From the few photos and video we have seen from it, it looks like it was a party, wish we could have attended!

Video at Fundraiser

Here's the second half of the video that played at the fundraiser for those who didn't get to see it. (The first half was the "Come Home" video that we've posted previously.)

Fundraiser Tomorrow!

The Fight for Faye Fundraiser is tomorrow! Please remember to come by and support the cause. Click the FUNDRAISER 07/09 tab for details. We'd like to especially encourage everyone to run or walk the 5K. It's going to be a blast!

Birthday Wishes for YOU, Faye!

This will seem VERY silly to anyone else who watches, but it was meant to make Faye laugh and smile on her birthday that had to be spent in the hospital.

Puffy Eyes

Faye became so puffy and swollen yesterday that her fingers left imprints on her face when she had her head in her hands. Today both eyes are puffy. The doctors' guesses are that it's either a virus or an allergic reaction. They gave her some antibiotics for the virus scenario and she's finished getting her chemo for this round so if it's an allergic reaction hopefully it will start to go away soon. She's still SUPER itchy so hopefully that goes away soon as well.
She got a visit from Elmo,Big Bird and Cookie Monster today!




And when the nurse came in to change her dressing she told him "Just take it off".... rather than use the wipes that makes it easier to pull the stickiness off. She sure is getting TOUGH!
She and Stacey made a Happy 4th Birthday sign to put on her door tomorrow and this morning she wanted to walk around with it and advertise her birthday to everybody! She is so stinking funny!

Chemo Round 3

More pics of home...

Faye's 4 Steps to Delicious Cupcakes:

Licking the beaters...

Placing the cups...

Posing for a pic while they cook... (don't they look exactly alike?? Soooo Cute!)

And last but not least, making them pretty!

Nixon's Baby Blessing!

Good face, Nixon!

Getting ready to head back to the hospital and giving a few more smiles to Nixon!

These check in days are always long days...they got started in clinic with a little play dough to pass the time.
Waiting a looong time for the lumbar puncture and bone marrow biopsy...Good thing they brought UNO! It's a great way for Faye to pass time.
She hadn't eaten since 8pm the night before and couldn't eat until after the procedure. But they didn't get her back to do it until 2:30! It's hard for them to explain to Faye why she can't eat when she's hungry. But she hung in there and as soon as she woke up from the anesthesia, she said "I want milk". Luckily Stacey was prepared with chips and dip and she ate while watching Cinderella. The nurses thought she was an old pro eating immediately like that!

They were finally admitted to a new room around 5:30 and started chemo around 11pm. The next day the chemo made her really sleepy, no appetite and she got a fever. But, luckily it went away. The day after, I know, Nick had a small scare when her arms were turning purple. Something was wrong with her circulation but Nick said it was just another day in the life of cancer and chemo so there must be a lot of things like that that happen and we never hear about it.

Grandma and dad brought doughnuts over the other morning! Nothing like a doughnut day with grandma!


Sunday, Faye had a great day with more energy but started to again get very itchy and red.

She loves practicing her letters.

It is very important to Faye that her babies are taken care of. Just last night she was putting both of them to "bed" and the babies had just "fallen asleep" when Faye's IV tower started beeping.....Faye got irritated and said 'That beeping is going to wake up my babies....they are sleeping.'


Faye's 4th of July was filled with: getting some of Mitchell's parade candy, bike rides in the hall, walks, pushing "babies" in their stroller, jumping on colored squares in the hall, jumping over colored squares, racing to the nearest EXIT sign and being chased... also a lot of scratching! Her upper back and lower neck now have little scabs all over from the scratching. She also started to get a little swollen all over. You can just start to see it here:

This morning she was much more swollen and her eye was swollen shut! Stacey tried wiping it with a warm rag but eye boogies weren't the problem. They thought because she slept on that side during the night that it was just fluid retention so they gave her more Lasix. (Which is not a fun combo with the Benedryl for itching... very sleepy and lots of potty breaks :( ) After getting the Lasix, the rest of her body went back to normal but her eye is still swollen shut. They sent an ophthalmologist up to check her out. He gave her an eye exam with eye charts and said her vision is good and a bunch of drops to dilate her eyes so he can check them out better later.

Faye really is fighting- and here's the evidence! You should see the other..... uh Cancer!

Poor girl! I hope they get it sorted out soon!

(I've updated the Fundraiser 07/04 page and want to say THANK YOU to everyone who came out to Faye's 4th of July booth in Riverdale! I know it means a lot to this cute little family!)