Chemo Reaction

So, after the spinal tap it was up to get her long round of chemo (PEG-Asparaginase). She unfortunately had an allergic reaction to the chemo. She started coughing, complaining about her stomach hurting, then she began violently throwing up, and the whites of her eyes turned pinkish. They quickly stopped the chemo infusion and gave her Benadryl through her port which made her quickly fall asleep. They are currently watching her to ensure the reactions don't flair up again, since this chemo is long lasting. They now gave her hydrocortisone to help with the reaction. We've been here since 7:30 this morning and it sounds like we'll be here for a while longer. Needless to say it's been a long day. 

New Portacath & The Beginning of Consolidation

Yesterday Tiffany took Lilly into the Riverton primary children's to have labs done to verify if surgery would happen today or not.  Lilly, rightfully so, was scared to have more blood drawn, but she's such a tough girl and just tells the nurse "don't count, just do it" as she turns her head away.

Turns out her numbers were good, her ANC was 1,000 which it needed to be 750 to be approved to do the next round of chemo.  So, this morning we left our house, my mom Claire stayed to watch over Emery, to be at the Hospital by 7:30.  We went to clinic to get an IV placed.  Again, Lilly is so brave to get poked yet again.  While at clinic we approved Lilly to be apart of a study to see which method of chemo is better in the overall long term outcome, the standard IT or the ITT intrathecal chemo (given into the spinal fluid).  She was randomly chosen to do the standard IT method where methotrexate is solely used intrathecally. Whereas the ITT method involves two additional meds given intrathecally.  This study is to determine which method has the best overall outcome at preventing relapse in the spinal fluid.  Needless to say it's been emotional reading all about the risks, possible side affects, and possible long term affects of all the types of Chemo given.  Especially knowing that all these are experimental and they do not know if they will have lasting affects on Lilly.  That being said Lilly was given two types of Chemo through her new IV line and we will be administering them at home as well over the next three days.

I can't begin to say how nerve wracking it is to play the hurry up and wait, wait, and wait some more game today has been.  After she finished up her batch of Chemo we headed down for the first time, thus far, to OUT PATIENT SURGERY, where we signed in and and played the waiting game. Then we went to the Prep room and talked the nurse, surgeon, and surgery nurse. Next it was on to the Pre-Op room to see the anesthesiologist and wait some more, till they took her back to the OR.  It's always hard watching her go back by herself, fortunately the anesthesiologist gave her some Versed and had her play on his iPhone a puzzle game.  Now its our turn to wait, wait, wait! The surgery went well. The surgeon was able to place the new port in the same place as the first using the same incision.  She also received her spinal tap and methotrexate intrathecally. This time however, both Tiffany and I were able to go back to the recovery room.  I went back first and gave Lilly her recovery gifts, a Frozen blanket and heart pillow.  Something I started for her first surgery on valentines day.  Yet again we waited and waited till Lilly was coherent, eating and strong enough to go home.  Lilly was super excited as were Tiffany and I to go home and not be admitted like every other time.

It sure is good to be home with our lovely Lilly.  I am so amazed at how happy and positive she is through all of this.  Sure she's been scared and anxious to do things and who wouldn't be but, she is an inspiration of strength to me.  Please continue to pray for her port not to get infected and that she will handle all the Chemos well with minimal side affects.  I can't thank everyone enough for the prayers, help and sacrifice given. 

Lilly showing her "Braveheart" in the recovery room.

Ye, "...are willing to bear one another’s burdens, that they may be light;

Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places that ye may be in...

Clinic

Word of the Day: Superhero

Every day since Lilly was diagnosed we've had a 'word of the day'. It's something we focus on when Lilly is having a hard time. The first day was "Happy." We've had the word "Giggles" and "Smile" and "Joyful." I'll have to post more about the rest of our words... But, it is our goal to have a word of the day every single day until Lilly is finished with this journey. 

Today we went to clinic. It was our first time. We should have been once already, but we kept getting admitted to the hospital. It was nice going to clinic. More like a doctors visit. Lilly had to get her port accessed. She was nervous. But, she did great. We put a numbing cream on her skin over her port just before we left for our appointment so that when we got there, it was numb and she didn't feel anything but pressure when it was accessed. Lilly decided she wants to use the numbing cream and get her ears pierced! Why not, right? We told her doctors that and they told us to patent the idea and make a lot of money off of it!! :) 

After Lilly got her port accessed, she had blood drawn, and then we met with a couple of different doctors. She met with Dr. Doug Fair. He's our favorite. He is so sweet with Lilly. We love him. And then she met with Dr. Mike. He is the head honcho over Dr. Doug. It was our first time meeting with him. He was nice too. 

Dr. Doug - checking Lilly's mouth for sores. That's a side effect from the chemo. :(

Lilly thinks Dr. Doug's hair looks like Prince Eric. What do you think? He said that's the nicest comment anyone has given him! Dr. Doug makes Lilly happy!!

Then we went to the infusion room and Lilly got her chemotherapy. And then we were sent home for the day. It was nice not to have to stay in the hospital, but it makes me sad how Lilly feels. Her tummy hurts her so much tonight. She's in tears sometimes. Say an extra prayer for Lilly tonight. Chemo days are hard on her.