Good morning. I apologize for it being so long before another update. Things have been, rough. We always have joked around the house and just within Lilly, Danny and I that Murphy's Law prevails. What ever can go wrong, will go wrong. It has always been our way of keeping challenges lighthearted.

Well, Lilly's fight is no stranger to Murphy's Law it seems :(

We came home last Thursday like I had updated. The days following were hard. She was nauseous and puking a lot. The one chemo drug, doxorubicin or as it has been affectionately nicknamed--The Red Devil has some nasty side effects. The drug itself is red, hence the nickname. One of the side effects is it attacks the fast acting cells, as chemo drugs do, and one of the fast acting cells in the body is the mucous lining in the mouth. As this is attacked and it breaks down it causes mucositis. This can lead to sores in the mouth. Lilly did not have any outright sores, but her entire mouth became quite red and inflamed. Her gums were killing her and she asked me more than once to pull all her teeth out. This also made it extremely hard on her to eat. She was hungry, but it hurt to eat and swallow. We have a mouth rinse and a mouth wash that helps to keep her mouth clean and to coat and numb her mouth. These helped, but did not make it much easier. One night I was so desperate for her to find something she could manage to eat without too much pain I gave her macaroni and cheese, waffle fries, a brownie, and a muffin topper. She was able to eat just a few nibbles of all of them. This all lasted from late Friday thru Monday. Her port was causing her discomfort as it was healing and her body just ached. Like I said, it was just rough. 

Monday, Labor Day, after we woke up and had all of our meds and got cleaned up we talked about getting out of the house. We went to The Bunker for their Labor Day cook out. Lilly was so conflicted...she wanted to see people and socialize but she also did not want people to look at her like she was broken, or to feel like all they could speak to her about was the cancer...We practiced saying thank you but I would really rather talk about something else for a while! And off we went. When we walked in Lilly was overwhelmed. There were not many people there at all, it was nice out so people were mostly outside. She got nauseous and had to go into the restroom...once she calmed down we went back out and sat down and a few people came up to her and said how great it was to see her and she started to feel more comfortable. Within a half hour she was smiling and laughing. It was so great to see my Lilly! We hung out for about 90 mins and then she started to get tired and we went home. The nausea and vomiting reared its ugly head back up shortly after we got home...
Tuesday, we had another great day! We were in great spirits, we had great energy and lots of smiles! Her and I played a few games and she did lots of coloring and talking to her friends! It was the closest thing to a normal day we have had in a while. 

Wednesday we had count check at the St Jude Clinic. We had had a bit of a rough night overnight from Tuesday to Wednesday morning. A nightmare around 1 and then puking around 4...but when she got up for her appointment at Clinic her spirits were still good. We had a great Clinic check in. The staff at St Jude is absolutely amazing. They greet her by name as soon as she walks in and they ask about things that she has going on specifically in her world. Not just general questions. They are truly invested in her and her care. I am so grateful to have them. We were at the Clinic for a few hours, had some more education together while waiting on refills for meds and for results. We have to keep a very close eye on her ANC count...this is what indicates if she has any of her own fighters keeping her safe from infection. Chemo obviously knocks that down so it is expected for her to have next to nothing or nothing at all. Her counts came back and she was where they expected but that meant she was very susceptible to infection and we needed to be super cautious. We went on our way home...
As soon as we got home, the nausea and vomiting came with vengeance. Poor thing was on the floor just retching saying her organs were trying to come up! This continued on for most of the rest of the day and it just wiped her out. We watched some movies and relaxed. Wednesday night she went to bed and her belly was upset but she was ok. She woke me up at 330am and said she had some belly pain and felt nauseous, no fever or anything at that point. 4 hours later at 740ish she woke up and was on fire. Her temp was 103. I called into the Clinic as instructed and they instructed us to come in...It is Saturday now and we are still here.

The Clinic immediately started her on an antibiotic and fluids. Her temp was 103.4 when she arrived, she was neutropenic and had a fever...infection was somewhere and she has no way of fighting it herself. Lilly was scared and to be honest I was terrified. You see things all the time where a cold or the flu can, well, you know, someone that is immunosuppressed. They were monitoring her very closely, drew a bunch of blood and cultures to run. Her blood pressure was also very low and they were discussing this sort of near us but not to us. 
The blood results came back and told us she had Rhinovirus, which is just a common cold. But again, neutropenic. The Dr came in and discussed the Blood Pressure issue...it was not coming up at all. They sent her to ICU...that was very scary for her and I. You hear ICU and you think very critical. So, away we went to ICU. This was overall a hard situation. ICU is busy and loud. They checked her vitals once an hour and she was not able to use the restroom without having a nurse come in. We made it through the ICU adventure though. We stayed the night in ICU. By the time Friday morning rolled around Lilly was starting to look and feel a lot better. Her blood pressure was still not quite where they wanted it to be so she was still being watched carefully. Her fever was still coming and going as well. She was getting as low as 99 but she would spend most of her time in the 101-102 area. 

Then, Friday late morning, things just started to get better. They took her temp around 8 am Friday and it was 98.3! She broke the fever finally, and without the assistance of Tylenol. We were moved late Friday afternoon to the Oncology (St Jude) floor. This is where Lilly spent her first treatment. We are even in the same room! When we came up here from the 4th floor everyone greeted Lilly and smiled and cheered for her when they saw her up here. She is much more comfortable up here and the staff is 90% all familiar. We have met a couple new nurses, but the majority have already met Lilly and she is more comfortable talking and being herself with them. It is a very comforting aspect for me too. These people genuinely care about my little girl! We got settled in here last night and had dinner, watched a couple movies and because we are on the 6th floor, they do not come in every hour to check on her. Lilly got solid sleep last night and I did too! We both needed it. 

Today, Saturday, has not been what we were hoping for. We were told that Lilly needed to be fever free for 24 hours and her ANC needed to be over 200. Lilly was charting for this reason...she was keeping track because she knew if she had a goal that it would help her to focus on the end result than get lost and caught up in being here and why. I am so proud of her and the investment she is making in her own care and her fight. She asks questions and she can explain what is going on with her cancer. Back to today, she had counts check around 4am and we got the results and we were at ANC of 250! The nurse came in to do vitals and her temp was 98.7, she was more than 24 hours without a fever. Lilly let out such an excited yelp! She knew she had met her goal!
Fast forward to about 945...the attending Dr came in and she decided that even though Lilly had an ANC of 250 and fever free for 24 hours she was not comfortable with discharging Lilly. We had to stay another day at least. She wants to see more upward trending on her ANC and she wants her off the antibiotics. Lilly was absolutely crushed. She started crying immediately. She does not understand, she did all she was supposed to and it wasn't good enough. The part that really drives me crazy is this Dr that came in and delivered this news, this was the first time she met Lilly, she did not examine her and she just stood there. Lilly was crying and asking what else she would have to do and all this Dr said was she was sorry she had to be the bad guy. I got frustrated, I told her that it was not right that 2 other Drs and plenty of nurses all were telling Lilly that she had to be fever free for 24 hours and her ANC needed to be 200 or better. And if this is not the way that it was going to be then it shouldn't of been said. Now, I understand 1000% this Dr wants to be sure. And I understand 1000% that if Lilly was NOT improving there would be plenty reason to not be discharged. However, Lilly has gotten incredibly better over the last 2 days. There are visible and obvious improvements. Her ANC counts on Weds were 20, Thurs they were 0, Fri they were 80 and today, Saturday they were 250. That is proof of improvement and climbing numbers. All of her cultures are negative also. 

This is only the beginning of her journey and it has been so hard already. I truly pray that it is going to get easier as we go. That she has gone through all of this at this point and it will be smooth going forward. In the last 12 days, she has spent 6 in the hospital. Her next treatment is her long one and will have her admitted for 5 days. That will this week coming up. They will start treatment on Thursday the 14th if her ANC is 750 or better...By the end of this month she will have more days in the hospital than not. I know this is not supposed to be easy but dang it, it is hard. Really hard. 

I am watching the sparkle fade more and more from Lilly's eyes. Today when that Dr came in and just plopped a big NO WAY in her face it was terrible... She just crumbled. And that made me crumble. I just want her to have normal. I just want her to not have the hardest fight of her life, now, at 10 years old. How is this fair?? 

I hope that we get to go home tomorrow. It was so great this morning when shew as excited that she had hit all the goal markers...I don't know we will ever get that excitement again because she will always be worried that just because they say one thing, doesn't mean that it is necessarily the case. 

Please keep praying and thinking positive for Lilly. She and I both appreciate it so much.