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!

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.

Today's doctor visit went fairly well. Lily's blood counts were still pretty good, although her hemoglobin was low.  The doctor said if this continues to drop, they will want to do a blood transfusion.  She also lost almost 3 pounds since last week; a lot for someone already so thin.

Today Lily had the chemotherapy called Vincristine, this is what caused her to have nerve pain in her jaw and mouth last week and numbness in her hands and feet.  Hopefully these side effects don't continue or get any worse. She is feeling good right now; she had a big dinner and is laughing at Sponge Bob. We are so looking forward to no doctor visits all week.

Goals for this Week

One of my goals for this week is to find a naturopathic doctor to help us learn more about alternative treatments and natural ways for Lily to cope with her back pain and the side effects from the chemotherapy.  I found a number for East Valley Naturopathic Doctors and a doctor who specializes in pain management and cancer treatment and am going to make an appointment, but if anyone knows of a good naturopathic doctor or has any ideas, I would be grateful.

My other goal is to get Lily eating! I am so glad she hasn't yet had much problems with nausea; she wore sea bands all week and I don't know if that has helped, but she is keeping them on just in case. However, Lily really doesn't have an appetite and it's been a challenge to find foods that she will eat that are healthy yet bland enough not to upset her stomach.  She does like homemade soups, pasta and smoothies but the same thing over and over gets old. Any good recipes or ideas on sneaking vitamins into her food would also be welcome.

One Day at a Time

Life isn't about waiting for the storm to pass; it's about learning how to dance in the rain

Every since Lily was admitted into the hospital and we knew something was seriously wrong, we have had to take things moment by moment and day by day.  It was far too terrifying to imagine things that might or might not happen in the future.  I wasn't surprised that this seemed to come naturally for Lily, but I was surprised at my own ability to do so.  
Taking each moment as it comes was a lesson hard, but well learned. It may seem difficult to find moments of joy while cooped up in a hospital for days on end where fear and worry are constant companions, but they are there if one looks.  Just being close to my sweet little angel and spending time with her; holding her, brushing her hair, rubbing her back and making her smile are enough. I appreciate every minute I have her with me.

We made it through our first week of chemotherapy!  It wasn't easy, but Lily has been so brave and strong. Her spirits have stayed good throughout and she just seems able to accept things as they come.  She knows she is very ill and that she needs to fight hard.

We spent a large part of each day this week in the outpatient clinic. On Monday Lily got another MRI, this time of her foot, and we were able to see a picture of the tumor. It is located in the middle of her foot between her bones and is surprisingly small for all the damage it has caused. 

The week started really tough with Lily still sore from her IV port placement surgey, which took place in the hospital last Thursday, and bone pain in her back that makes it difficult for her to move around. Add to that the side effects from the chemotherapy and you have a very bad situation.  With the chemo, she has been experiencing nerve pain in her neck and jaw and numbness in her hands and feet, as well as severe abdominal cramping.  We spent the whole day at the clinic Thursday because Lily was in so much pain. An x-ray of her tummy showed that it was full of gas (if anyone knows any natural remedies for gas relief they would be welcome).

It is terrible to have to see her suffer through this and to know that the chemo is damaging more than just cancer cells, but it is really our only option at this point.  Everything has happened so fast, I feel unprepared and uneducated about everything that is going on.  It is more than a little ironic that I used to hesitate to give my children even simple over-the-counter medications, and now this. The only good thing is that she is otherwise healthy, with a strong immune system.

We are looking forward to being home this weekend and to having only one day of chemotherapy next week (Monday). Hopefully her appetite will improve so we can build up her strength for the next cycle of intensive chemotherapy.

With Thanks and Love

I would like to thank you all for the love and support you have given Lily and our family in the last few weeks.  I cannot imagine how we could have gotten through without the kind help, love and prayers being sent our way every day.