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!

I haven't wrote for a while, partly because I've been so busy but also because I felt like I didn't have anything good to say. Last week was rough. With chemo everyday, Lily was feeling very unwell and on top of that, her spirits were low. She was feeling sad and I can't blame her. She has been through so much, and because she has been so sick, she hasn't had much time to grieve. 

This week, however, she is finally feeling better! She still has occasional bouts of nausea, etc, but overall she is much improved. She only had a half  dose of Vincristine on Monday and on Tuesday and Wednesday she visited the naturopathic doctor. He gave her vitamins and amino acids through her port IV. Afterwards, she seemed to have much more energy. She has been up walking around and Wednesday was finally willing to leave the house for something other than the doctor. We went to Grandpa's birthday dinner. Everyone was so happy to see our Lil more like herself. She was excited to wear something other than pajama pants and we realized that the last time she put shoes on was the night we went to the hospital a month and a half ago!

On our way to Grandpa's house and not (!) in a wheelchair

Our goals for the rest of the week are:
A) Go nowhere near a doctor's office
B) Sew some fabulous renaissance garb because Renaissance Festival here we come
C) Eat
D) Eat some more

Whew! What a week. We're all feeling pretty worn down around here. These last two weeks with only two days of chemo were supposed to give Lily some time to build up her strength because we are back to chemotherapy every day next week. Unfortunately, it hasn't worked out that way. Lily has continued to have stomach pain and lose weight. She is usually in pretty good spirits throughout the day, however, and has been  working on Valentine's crafts and doing some sewing, but at night she has a hard time sleeping and experiences a lot of pain and numbness.

 Lily has also started losing her hair by the handfuls. I am surprised at how easily she has accepted this as just part of the process.  In the past, she never wanted her hair cut and always liked it down and long. Unimportant things like this just don't seem to matter any more.

 It is obvious from the severe symptoms that Lily has been having that she is particularly sensitive to the Vincristine chemo. The doctor plans on cutting back her dosing for now and hopefully that will help with her stomach pain.

Lack of sleep has sure worn me down; I've had a sore throat this week and it's been hard to stay positive and have the energy to deal with each day. I have also started back at work this week, but am so thankful that I have the most amazing job and get to work from home.

We have been visiting the naturopathic doctor and he has been giving Lily vitamins and amino acids through her port IV. Lily also started physical therapy this week to help get her walking again without depending on her walker.

So much for no more doctor visits this week! We spent the afternoon at the clinic today because Lily has been sick to her stomach, weak and not eating.  They gave her some fluids and anti-nausea medicine through her port IV and got her set up for a blood transfusion tomorrow morning.  I'm feeling pretty nervous about the whole transfusion thing but I'm also hoping that it will help her feel better.  She may have more energy and be less lightheaded once we get her hemoglobin counts up.

Phil and I also talked to the naturopathic doctor today. Unfortunately, our insurance does not pay for any alternative medicines, but we feel like it is really important to try to support Lily's immune system while she is going through chemotherapy, especially with her not eating well.