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...

FEVER.... Again?

Back already??  This will make our 4th admission in 2 1/2 weeks.  On Friday, Lilly had chemo for the first time at clinic. Which went surprisingly well. We finished up there after 2 1/2 hrs. Which is great compared to all previous hospital visits.  We went home and things were fairly normal. Lilly was tired but that's expected after chemo.  When Lilly went to bed around 12:30am her temp was 99.6, nothing quite worth worrying..... Yet.  Then Tiffany woke up with Lilly at 2:45 to take her potty. When she climbed back in bed she decided to check her temp again.... It was 101.9, which means it's straight to the ER to get antibiotics and admitted.

Love the Mowhawk!!! ...two thumbs way up

With Lilly having a low immune system or (her ANC counts are low) they take us right to a room where they quickly access her port in her chest with a 22 gauge 3/4" power straw. Shortly after, they begin giving her antibiotics.  This time however the RN was having a hard time getting the port accessed to draw blood.  After a little trial and error she called another RN to help.  She ended up having to insert the needle (straw for Lilly's sake) a little deeper.  After that she was running great. 

After waiting for our room to be ready and visits from the ED docs, we were wheeled up to the 4th floor.  Their main concern with fevers is bacteria so they run cultures with her blood upon arrival and pump her body full of antibiotics. Now if a fever is no longer present she can possibly go home after 24-48 hrs if cultures are negative.  However, this time her fever did not break so easily.  As a matter of fact it would only go down if they gave her Tylenol and after it wore off it would spike back up.  The highest it ever go to was 102.2.  One thing we as parents have been informed not to use at home is Tylenol or any fever reducer.  They don't want us to hide any chance of there being a fever that would stop us from coming into the hospital. So, after a full day of ups an downs with fever and us being concerned we learned that she'd stay here at least 24 hrs after her fever breaks with no Tylenol in her system.  

Play legos for hours on end.  We built soms neat things.

We were getting worried when Lilly's fever wouldn't break without the Tylenol. Tiffany was especially worried when I asked what the worst possible complications would be with a bacteria - which would require the port to be removed and let the site heal and try again.  Lilly's fever finally broke on Sunday around 3:30 pm which gave us hope that things would get better and she could go home on Monday if it would hold out.  That evening things were still looking good with no fever so I went home to sleep and go into work on Monday.  Monday morning Tiffany called me to inform me of a DNA test done on her blood from Saturday which showed an infection.  Since the DNA testing is such a new method they were unsure how to react with the info given since it does not specify a bacteria type, just that there is one.  So they were waiting for the cultures to grow the bacteria which eventually was identified as pseudomonas.  Tiffany later informed me while at lunch that the doctors determined it would be best if they removed her portocath in her chest since this type of bacteria likes to cling to plastic surfaces and can get really bad.

My Lovely Lilly still shines through, in spite of all the pain.

What a devastating blow for Lilly, who thought she was going home that day 
since she had no fever.  I unfortunately was not there but, I am glad Primary's has wonderful Child Life Specialists like Hillary to help explain things to her. I know it was hard on Tiffany and that she has been especially strong for Lilly over these last few weeks.  Lilly took the news with some sadness and tears, but surprisingly well.  After Lilly was informed she asked Tiffany what I would surprise her with in the recovery room.  Since I gave her a blanket and heart pillow for her first surgery, she now expects it for all the others.  

Tuesday was a hard day for Lilly since she had to go without food and water for so long.  She was originally scheduled to go in at 1:45pm so she couldn't eat after 3am.  At 10am we were informed that she was bumped back to 5pm, but still meant she couldn't eat anything.  Her doctor asked the OR if they could move her up to an opening closer to 1pm.  We ended up going down at 1:30 and Hillary came with us to help keep her calm.  She was still very apprehensive so Tiffy and her watched Frozen to help her relax.  She was so very brave and did much better than the first time.  Sure it helped to get "Versed" to have her sleep before she entered the OR. 

The surgery went very quickly.  The recovery however, took longer than the actual procedure.  Needless to say I got Lilly a surprise for the recovery room. What can I say, I'm wrapped around her finger.  I got her a new Frozen shirt, beanie, and a friendship heart necklace for her and Emery. She did such a good job and still amazes me with her happy spirits. She did so well and wanted to start eating right away because she was SO hungry.  Little by little she was able to eat food. 

What's not love about this Beautiful girl

So, the next step is to wait a day and then on Thursday place a temporary Picc 
Line in her arm for 2 weeks.  Then in 2 weeks while they have scheduled to do the next bone marrow biopsy, they will place a new portacath in her chest. Hopefully she will have better success at staying healthy.  

Thanks for your continued prayers.