Sunday, October 26, 2014

Week from... Well... You get the Idea!

Often when you sit at home with kids in bed it's a time of peace and quiet. Well, I'd like to say that this was one of those weeks, but sadly it was not. This week was a rude reminder of just how fragile our family is. I came home late every night after is visited Lilly in the hospital or Emery at grandmas house to a house that was eerily quiet and empty (with exception of the dogs). I wandered aimlessly through the house longing for my girls to be home to fill the rooms with laughter and child's play. My thoughts turned to the song from Les Miserables, where Jean Valjean sings "Bring him home". The lyrics speak of a boy, but I found myself replacing that boy with my Lilly to describe the feelings I have been having for her and her battle against cancer.

As was previously described in a post Lilly has had very trying time this past week. Let's recap shall we. She's had a total of 5 platelet and 4 blood transfusions in 11 days. One of which she had a rare reaction to and peed dark red blood. She's had an echo-cardiogram, chest X-ray, abdominal ultrasound to which they found 4 gallstones, abdominal X-ray, urinary yeast infection, rhino-virus (common cold), and the irregular oxygen saturation (breathing patterns). Oh and who can forget the 2 fevers which brought her to Primary's. She also had a sleep study done to check her oxygen issues. So much happened in just a short amount of time. And yet Lilly never ceases to amaze me with her positive attitude. Sure she's been scared... So have I, we all have,  but with knowledge of what's happening she handles things better than most adults. 

Wonderful Dr.'s and Nurses

The ability to tell Lilly what's going on is extremely helpful.  However, that same ability of instruction and understanding becomes more difficult and nearly impossible for my dear sweet Emery. Oh, how hard is it to see our little Emery's eyes quiver with tears as we rush Lilly to the hospital and leave her behind. Sometimes for days or weeks at a time. I know she's in great care, but my heart aches every time as I look into my rear view mirror to see her blow kisses as we say goodbye again and again. Wondering if she understands why we have to leave so sudden and if she knows how much I love her. That same heartache comes as I watch my Lilly endure poke after poke and excruciating amounts of pain. So much pain that she has to be carried from her bed to the bathroom. Or as I watch Tiffany fight back her tears so she can be brave for Lilly as she endures the many complications of her treatments. It's extremely hard to watch each of your family members suffer so much as Lilly faces her internal battle against Cancer. Oh, how I long to have normalcy and have all my girls under one roof with no fear of each moment that passes. So, glad we're all home now. Maybe not fear free, but at least we're home.

Les Miserables, "Bring him home"
God on high, hear my prayer.
In my need you have always been there.
(She) is young, (S)he's afraid.
Let (her) rest, Heaven blessed.
Bring (her) home.
Bring (her) home.
Bring (her) home.
(S)he's (just) the (girl) I ... have known
(Since) God had granted me a (girl).
The summers die, on my own,
How soon they fly on their own.
And I am old and will be gone.
Bring (her) peace, bring (her) joy.
(S)he is young. (S)he is only a (girl).
You can take. You can give.
Let (her) be. Let (her) live.
If I die, let me die.
Let (her) live.
Bring (her) home.
Bring (her) home.
Bring (her) home.
(words added by Jay)

Saturday, October 25, 2014

Still in the hospital....

I sit here wide awake as Lilly is getting her sleep study done... What better time to do an updated blog post, right? A pulmonologist came and evaluated Lilly today and decided that a sleep study was needed to determine why she's having sudden drops in her oxygen saturation levels. Hopefully they'll be able to determine a cause and we can fix the problem so we can go HOME! I have a feeling it's going to be a L-O-N-G night. Lilly is going stir crazy. (I am too). Because Lilly's ANC is zero, she can't leave her room. It's hard to stay in one place all day, every day. But, we haven't had to have a blood or platelet transfusion in the past two days, so that's great. Lilly's doctors gave her the ok to eat food again, but she still has no appetite. They've started her on an apptetite stimulant, so hopefully she'll start to get hungry soon. Today she had a tiny interest in food. She had a few bites of fruit for breakfast, and a half of a grilled cheese sandwich for lunch... That's huge for her lately. Unfortunately, she got some pretty severe stomach pains after her grilled cheese sandwich. I'm assuming it's because of her gallbladder issues. That thing has gotta come out. I'm afraid stomach pains after eating is going to get really old really fast! Plus, Lilly isn't a very good eater. Carbs and candy and breads and fatty foods are what she craves - that's not a good combo for an angry gallbladder. She's also being treated for a yeast infection, and she doesn't have C-diff! HALLELUJAH! I'm definitely happy about that! Lilly has already had cdiff twice since diagnosis, we don't need it again. Lilly was "suppose" to start Long Term Maintenance today, but she didn't make counts and she's been extra sick so it's going to have to wait. I secretly hope she doesn't make counts next week either because she needs a break. Too many things have gone wrong lately. She is so sensitive to everything... Just like Dr. Doug says - Lilly is a delicate flower! It's the truth!

There is no way I would be able to sleep with all of this equipment on my head and face. But Lilly is... She's such a trooper. And most of the time she does it with a smile on her face! She's gone through so much this week... Chest X-ray, abdomen X-ray, abdomen ultrasound, 5 blood transfusions, 6 platelet transfusions, echocardiogram, ER visits, sleep studies... All of that in one week! We need a break! Thank you all for your love and concern. We can feel your prayers and we know there are angels on the other side helping Lilly along the way. We have felt them too. 

Sunday, October 19, 2014

Platelets, Blood, and more Platelets

Still here in the hospital... Lilly is in the last week of Delayed Intensification and we are hoping and praying it only gets easier from here. It has definitely been "intense" and the chemo Lilly has received has knocked her counts and immune system way down. This morning Lilly is scheduled to get her 7th transfusion in just over a week. She's had 4 platelet transfusions and 3 blood transfusions. I cannot say thank you enough to those who donate their time and blood to local blood banks which helps save lives like Lilly's. People have asked if they can donate specifically to Lilly. The answer to that is no, but the blood bank that Primary Children's Hospital uses is ARUP. Go donate to ARUP and know you're not only helping Lilly, but other sick kiddos as well. Thank you! Thank you! Thank you! It means so much to us! The reason we are admitted in the hospital is because Lilly got a fever. When you're neutropenic (low ANC), you're at a much greater risk of getting an infection so they take fevers very seriously. Lilly had blood cultures drawn and she's on IV antibiotics (through her port) every 6 hours. We are hoping to go home today after her blood transfusion, but I see more transfusions in her near future. She will also have to get IV antibiotics at home through her port because her ANC is still zero. 

Lilly and JT were in clinic together on Friday, so we were surprised to see him on the 4th floor when we were admitted. He had just gotten to the hospital about 10 minutes before us because of a fever as well. Lilly and JT were making the best of staying in the hospital. Lilly can't go out of her room because her ANC is so low, so JT came to her window to draw and play games. Lilly had her own "bittersweet" moment... She was a little sad at first because it reminded her so much of Michalla and the fun times she spent with her making memories in the hospital. She will forever miss Michalla and the special bond they shared, but we are grateful for JT and his friendship. 

We are all in this together, as cancer families. We all fight together and we all have a special connection with each other. So grateful for the amazing doctors and nurses who take such good care of our kids. 

Sunday, October 12, 2014

Halloween Havoc with the Mascots

It's amazing how fast Lilly can bounce back from a crappy day... On Friday, we spent over 8 hours in the hospital getting chemo, blood, and platelets. On Saturday, we were hanging out with the Mascots. The Mascot Miracle Foundation put on a Halloween Havoc for the kids and we had so much fun!

Lilly's and Emery's cousin Sydnee was in town from California, so we brought her with us. It's nice to play with cousins you haven't seen for a while.

Lilly says she doesn't think she could be a pioneer. She said it was too heavy pulling that hand cart around. Even though she may not be physically strong right now, Lilly is one of the strongest girls I know...

Horseback riding is always one of Lilly's favorite things to do... Notice the bruises on Lilly's legs. That's a sign of low platelets.

Smore's with GIANT marshmallows! MMMMmm!

Lilly loves Felix so much! We were hoping he would recognize Lilly with her wig on... He did! There's something about that big blue bird that makes Lilly smile from the inside out. He is an angel on this Earth and we are so grateful he is a part of our lives.

Lilly has never line danced before, but Felix was showing her her how it's done. :)

What a fun night!
Can't wait to spend more time with this crazy zoo!

Wednesday, October 8, 2014


We had a fun night last night... Lilly got to go to the Make-A-Wish Foundation and declare her wish! She was so excited to go! It was hard for her to wait until 5:15. :)

We learned that anyone can come here and make a wish in the wishing pond...

But, only special kiddos like Lilly get to make any wish they want. Lilly got to write her wishes down to be sent to the wizards. When they asked her if she knew what she wanted to wish for, she said she did. And then she started to talk about Michalla. She told them about her best friend and how she had cancer too, but that she passed away and that she misses Michalla so much. Lilly said if she could wish for ANYTHING, it would be to have Michalla back. But, she said she knows she can't wish for that right now. Lilly knows she will see Michalla again someday, she's just going to have to wait a little bit. So, what is the next best thing?? DISNEYWORLD! She told the Make-A-Wish granters that she wants to bring a doll of Michalla or something special with us on her trip because Michalla never got to Make-A-Wish. She's such a thoughtful little girl.

Lilly's special key that she got in the mail opened the door to the wishing tower - where she got to send her wish to the wizards. It was so magical! I love how Lilly made sure to include Emery in everything she did. Emery felt just as special as Lilly did last night.

Isn't the star constellation beautiful? Every kid that makes a wish gets to have a "star raising" party! Lilly already told them she wants a PURPLE one! (of course)

Trish and Jeramy are Lilly's wish granters. Jay and Jeramy used to work together a few years ago, so it was special to have him there with us.

We are so grateful that Lilly is getting closer to Long Term Maintenance, where her treatments will be less intense, and we can start trying to be a somewhat "normal" family again. We are excited that Lilly got to make her wish and can't wait for the amazing memories we will make in the 
Happiest Place on Earth!

Wednesday, October 1, 2014

Delayed Intensification - Continued

Lilly has started the second half of Delayed Intensification. This will be the last intense part of treatment before she reaches Long Term Maintenance. Hallelujah! Once in Maintenance, she will still get spinal taps and chemo and take lots and lots of medicine, but it should be less "intense" and not as often and we are so excited about that! Lilly started DI last Friday with a spinal tap to get Methotrexate chemo into her spine, as well as two other chemos through her port - Cytoxin and ARAC. Lilly stayed accessed for 4 days and continued to receive more ARAC at home from our home health nurse. ARAC makes her feel really yucky. It's one of our least favorite chemos to get. But, we do what we have to so Miss Lilly can get better. We have another spinal tap and 4 days of chemo scheduled for this Friday. 

Whenever Lilly gets accessed or deaccessed, this is what the needle looks like that goes into her port in her chest. Lilly's is a 22 guage 3/4" power port. To say this was scary the first 10 times she got accessed is an understatement. But, she's pretty good at it now. When Lilly is accessed with this needle in her chest, she is able to receive chemo/fluids/meds/blood and it also lets them take blood. It's an amazing little device, but we do have a love/hate relationship with it as I'm sure all cancer kiddos do...

Whenever Lilly is feeling good, we take advantage of it and get out of the house. Lilly often times feels "stuck" and that she can't do anything or go anywhere. Especially now that cold and flu season have started, we have to be extra careful not to get Lilly sick. On Sunday afternoon we went for a drive up Big Cottonwood Canyon to Silver Lake. Brrrrr! It was cold! We were only out of the car for 10-15 minutes before we hopped back in and continued on our adventure.

Lilly was excited to wear her wig. It kept her head nice and warm!

We headed up Guardsman Pass, and by the time we got to the summit, the clouds had rolled in and it started hailing nickel sized hail! 

But then the clouds parted and it was a gorgeous day once again. 

We ended up in Midway and it was such a beautiful drive. Sad to say, all the vibrant red leaves had already fallen off the trees, but the yellow quaking aspens were gorgeous. I love Fall. I'm glad Lilly was feeling well enough to go for a Sunday drive and enjoy all that God has created for us.