Lily has been fighting a horrible cough and congestion the last few weeks and even ran a low grade fever this past week. Her white blood counts were extremely high due to the daily Neupogen shots I had to give her. When they are high like that, she feels sick and achy.

This week, even though we continued the shots, her white counts came crashing down because of the chemo. Her hemoglobin and platelets were also low, which makes her feel weak, tired and headachy, so today she had a blood transfusion. Although she has had several transfusions of hemoglobin, today was the first time that she needed a transfusion of platelets and she ended up having an allergic reaction with hives and itching. Today was also the first time I wasn't at the clinic with Lily during a blood transfusion.

I am so thankful to my mom for volunteering to go with her, as I had a lot of work I needed to do. It was a long day for them both- 6 hours! Thank you momma.

Today's transfusion should help Lily feel better and she has next week off from chemo for evaluations.

This week is another loooong 5 day chemo week. Lily gets two chemotherapy drugs each day- Ifosfamide and Etoposide and comes home with a hydration pack and Mesna to help protect her bladder from the chemo. She has been tired and sick off and on the last few days. There are several anti-nausea medicines that she takes, but she really doesn't like taking them either. One causes headaches and another "makes her feel funny." Her counts are low too, so that also contributes to her fatigue. She is scheduled to have a blood transfusion on Thursday on top of getting chemo that day. Friday we will meet with the naturopathic doctor. Next week, Lily won't have any chemo so that she can recover from this week. She will have daily neupogen shots to help get her white blood counts back up, though. In two weeks, it will be time for another evaluation and Lily won't have chemo that week either. She will have another PET scan and an MRI of her foot. At that point, her doctors will recommend her radiation treatment plan.

To help raise her spirits this week, I agreed to build Lily a new bigger and better dollhouse. We went to Hobby Lobby and she picked out the biggest one they had. She was so excited and now has something fun to look forward to when she comes home from the doctor.

I've been super busy with work, but that should be winding down a bit in a few weeks. I am really looking forward to Lily having a few weeks off from chemo too, although there will still be several doctor visits during that time. I am NOT looking forward to the idea of Lily getting radiation treatment. This is not something that we have yet experienced and the whole idea of it really freaks me out.

Today; helping pick veggies for dinner

Lily had the blood transfusion today without any problems. Actually, she slept through the whole thing, which took about 3 hours.

Afterwards, she had chemo. That transfusion took a good 3 hours as well. In all, we were at the clinic for nearly 7 hours today.

Lily has been such a trooper all week. She never complained even though every day she had to get up early, spend half the day at the clinic getting treatments and go home attached to a heavy hydration pack. The constant fluids meant that she was waking up several times a night to go to the bathroom. This, combined with the fact that her hemoglobin was very low made for an extremely tired little girl. Nonetheless, through it all, she has had cheerful spirits and a positive attitude. I love my girl!!

We met with a new naturopathic doctor on Thursday. He has been amazingly helpful already and is infectiously positive. He wants to start next week with intravenous nutrition therapy and has sent us a plan for supplements and diet. I like that he is willing to work with our oncologist to find out what is going to work best with Lily’s chemotherapy treatments. From him, we are able to get professional advice from a different perspective.

Next week will be chemo free! However, Lily will have to have daily injections of Neupogen in the hopes that her white blood counts don’t drop too low. Luckily she hasn’t had any uncomfortable side effects from this drug other than occasional bruising at the injection site.

We will be meeting with the naturopathic doctor next week and will pop into the clinic for blood draws on Wednesday. Hopefully there will be no other need for doctor visits!

Lily had the blood transfusion today and it went all right; I was relieved that she didn't have any reactions to the blood.  Afterward, she felt relatively okay and was able to lay outside in our back yard for a while to enjoy the cool breeze and beautiful sunny weather we have been having.

She is still having lots of stomach problems, though, and eating next to nothing. She doesn't have an appetite and the very mention of food usually makes her sick to her stomach.  The funny thing is that instead of tolerating bland, easy to digest food, when she does get hungry, she wants the craziest things.  Luckily, Daddy and Grandma are always willing to run and get her what she craves.  Last night, after being sick all day, she decided she wanted barbecue ribs so Phillip went and got her a rack of ribs. Of course she was only able to eat a couple, but it was better than nothing. 

It is frustrating when what I really want is to fill her up with lots of healthy foods and juices that may help her tummy and give her the nutrition she needs, but she gags at the very sight of most foods.

She has been quite a trooper, though, with all she has been through so far and we want to try to keep her spirits up because it is quite depressing to be so sick for so long. She still is not able to walk around much and it is hard to be confined to bed and wheelchair, unable to dress, bathe or use the bathroom without mom's help.

On a more positive note, the chemotherapy is doing something good; Lily's back pain has diminished so much that she doesn't need pain medication for it. Yeah!