Hooray for Friday!

Lily has had chemo every day this week, and she's been so brave. Monday when she woke up she had a sore throat, so on top of nasty chemo, she has had to deal with that. Also, with her port accessed, she has a hard time getting comfortable and finds it difficult to sleep well at night.

The good thing is that she has kept her appetite all week, although with her sore throat, she hasn't wanted much more than soup. Luckily, making all sorts of yummy soups is kind of my specialty!

We are so glad it's Friday. And, it's a 3 day weekend! Next week, Lily only has one day of chemo, then she is off for a week. After that, she repeats the cycle of 5 days straight followed by one day. And then...her treatment schedule is complete.

We will go in for another evaluation after that point.

We've been so busy lately!

Last week Lily had chemo Monday and Tuesday and you would think she would be too tired and sick to do much afterwards, but surprisingly, very little slows her down these days. She stayed busy hanging out with friends, swimming, and last Saturday we had the clothing drive and John & Jen's anniversary celebration.

Lily had so much fun at the anniversary dinner and afterwards swimming in the hotel's pool. Everyone was so happy to see her there, full of energy, and having such a good time.

This week she only had chemo on Monday, but her blood counts dropped from the previous week's chemo, so she had a blood transfusion on Wednesday and what feels like endless Neupogen shots to bring her counts back up.

Tuesday was grandma's birthday. We had a birthday fiesta at our house:

Thursday we decided to start building a chicken coop (Thank you Marcus for inspiring us):

And Friday we had another tea party with one of our favorite fellow tea partiers, the Lovely Lacey :)

Next week will be a long chemo week. Lily will be getting chemotherapy everyday, Monday- Friday, with the home hydration pack every night.

The last few weeks have been difficult. I haven't had the time or inclination to write.

Our beloved Papa passed away June 3rd. Both Lily and I were able to be with him and say goodbye to him that day. He had lived a long and full life and it was time for his beautiful spirit to leave his old frail body. He passed in his home surrounded by his loving family.

I was glad Lily was able to visit with him that day because she was too sick the next week to be able to attend his funeral. Out of all the chemotherapies she has had so far, Irinotecan seems to have the worst side effects on her as far as making her sick to her stomach, and this is a chemo that she gets for five days straight. It's already been a week and a half since the last dose and Lily is just now getting over the diarrhea and loss of appetite it causes. She hasn't had this chemo since the beginning of her treatment when she was so sick and lost 10 pounds in two weeks. Sadly, over the last couple of weeks, she lost the 5 pounds that she had slowly gained back since that time. She has also had 3 doses of Vincristine over the last 3 weeks and 7 radiation treatments to her foot.

Nonetheless, in the last few days since her stomach has been feeling better, she is back to her peppy self. She doesn't want to sit still and roams around the doctor office talking to everyone. On Monday, the doctor was surprised because although she wasn't acting like it, her hemoglobin was low. She will be getting a blood transfusion today in order to bring it back up.

I'm dreading next week which will be another 5 days of Irinotecan along with radiation treatments every day. Lily has lost more hair but still has some straglers hanging on. We have never cut her hair and she still has a tiny braid of long hair that keeps getting smaller and skinnier. We call it her padawan braid and tell her that when it is finally gone it won't be so bad because it will mean she is a Jedi Master. She likes that idea.

I've been so busy with work and doctor appointments that it is hard to find the time to do anything else (like clean my house or pay my bills- woops!). I'm so looking forward to my month off starting next week! I'm also looking forward to Lily's benefit show on Friday.

So much for Lily feeling well. She was up all last night with stomach pain and vomiting. We rushed to the clinic first thing in the morning so that she could get medicine for her pain and nausea and fluids through her port. She felt better afterwards, but hasn't wanted to eat much today. Poor girl. We've got two more days of this.

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

I knew something was going on yesterday! Lily ran a fever all last night. Neither one of us got much sleep, but Lily is feeling a bit better this morning. She didn't have any chemo last week and her blood counts have not yet dropped from this week's chemo, so a fever right now isn't as dangerous as it might otherwise be.

Please Send Prayers and Thoughts of Loving Kindness

Lily had another long chemo day on Monday (6 hours) and came home Monday night on IV hydration fluids. Tuesday's appointment was much quicker and Lily was feeling surprisingly good both days, but it all must have hit her today because I could tell she wasn't feeling well at all. Sometimes it is very hard to tell when she doesn't feel good because she rarely complains. Even if you come out and ask her how she is feeling, most of the time she won't admit to feeling bad. Maybe she thinks if she says she feels sick, it will make it more true?

Anyway, I knew something wasn't right when she didn't want to make fairies with her new mold she was so excited to get. She didn't want to draw or do any of the things she loves. Her appetite seemed okay because she kept asking for different foods as though she wanted to eat them, but then she picked at the food and barely ate anything. I broke down and asked her if she wanted a cookie. She said, "NO!" as if I had asked her if she wanted fried worms. I asked her if her stomach hurt? No. Head hurt? No. Nauseous? No. Tired? No. Sad? No.

I asked her if she was super brave? Yes.

Why does she have to be so tough? Why doesn't she cry and complain like I would if I were in her shoes? It is just not fair. It would be easier to bear if it made any kind of sense.

I need to learn to be more like Lily and not ask why; to accept without anger or complaint.

This week Lily did not have any chemotherapy treatments; after 5 consecutive days of chemo last week, she needed the break to improve her blood counts before going back next week.  On Wednesday we went to the clinic for a blood draw and her counts were extremely low even after the daily Neupogen shots I have been giving her. That night, Lily's finger that had been poked for blood labs was really sore and swollen and was obviously a bit infected- a source of concern considering she didn't have the white blood cells necessary to fight infection. Thursday morning we had an appointment for Lily to have another blood transfusion and the doctors cleaned and wrapped her finger and gave her some antibiotics.

Other than her sore finger, Lily has been feeling good this week and it seems like her energy is increasing. She hardly uses her wheelchair anymore. The only time she needs it is if we go for long walks. I was surprised by the amount of energy she had this week, considering how anemic she was before the transfusion.

Her appetite is more normal now too. She is a little more willing to eat a wider variety of things. She even has been willing to drink my fresh juice lately! I have to be super careful about bacteria- washing and peeling the apples, beets, carrots, etc. before I juice them, but it's worth the effort. When her counts are at their lowest, I cook all her veggies first...I will admit I have become a germaphobe lately!

I haven't written for a while because I have been so busy. Last week Lily was hospitalized for three days because she was running a fever and since then I have been struggling to get caught up with work, etc.

Lily's fever lasted less than a day and was low grade, so we weren't too worried. However, she did have low white blood counts that week and extreme fatigue, so we took her in right away to the doctor. The doctors at PCH follow the same protocol for all patients, which is a fever over 100.4 and low counts = hospitalization.

Lily had her first ride in an ambulance from the clinic to the hospital and by the time we got to the hospital, her fever was gone and did not return the whole time we were there. I was so thankful that she was not seriously ill, but also quite frustrated that her doctors did not want to release her until her blood culture came back negative for bacterial infection. I understood their rational: "better to be safe than sorry." However, I tended to disagree with the idea that the hospital is the safest environment for someone in this circumstance (she was obviously not seriously sick). Yes, in the hospital we had direct access to doctors and medication, but we also had direct access to lots of sick people and hospital germs. At the hospital, we also got lack of sleep and unhealthy hospital food, neither of which are good things for someone trying to heal. It is also stressful and depressing to be locked up, indoors without fresh air!

However, in distinct Lily fashion, we tried to make the best of it and look at the bright side of things. There was the play room with lots of games and crafts to do everyday. There were super nice nurses who are willing to give lots of attention. There was plenty of time to lie around watching movies. And there was the fact that Lily felt good enough to enjoy these things! Yes, we are learning more and more that there are so many things to be thankful for no matter what circumstances we find ourselves in. J

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!

This week Lily had a break, with chemo only on Monday and no other doctor appointments. Her doctor is back to giving her a full dose of Vincristine and she is tolerating it much better than she did in the beginning of her treatment. Lily felt relatively good all week, and was only extra tired and weak when her blood counts dropped from the chemo the week before. The drop in blood counts usually occurs 7-10 days after certain chemotherapies-- like those she had last week. Lily is given time to recover and get her counts back up before her next intensive round of chemotherapy. All week I had to give her daily injections of Neupogen to help increase white blood counts, but red blood counts can only be increased through blood transfusions and I think she may be getting close to needing another one soon.

Over the course of the week, Lily was able to hang out with her friends, go to girl scouts and attend the lunch my dad’s work had on Friday.  We also went to the Boyce Thompson Arboretum. I was hoping we would see spring flowers, but I guess we were too early; there weren’t many flowers to be seen. It made me sad, remembering our last visit to the arboretum before Lily was diagnosed. It seems like ages ago, but in reality it was less than four months ago! It's strange to think that she had cancer then and we did not know it; she seemed healthy and full of energy. It is also unbelievable how quickly her health was ravaged by it!

Spring break is next week and fortunately both Phillip and I have the week off from work because Lily is scheduled to have chemo every day at the clinic. She will have two more new drugs- Isosfamide and Etoposide- and will have to be on 24 hour hydration throughout the entire week. Each day after her doctor visit, we will be sent home with fluids that will be continuously pumped through her port IV to ensure she stays hydrated and to protect her bladder from the chemo.

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Lao Tzu

This week we have certainly had our ups and downs, but I feel like I am learning acceptance and with that comes a feeling of peace and strength.  In small ways this week has been one of insight. Lily’s courage and optimism in the face of everything thrown her way humbles me and makes me stronger.  If she can handle what she has gone through and still smile, then I can do no less. 

On Monday Lily had three different chemotherapy drugs: Vincristine, Doxorubicin and Cyclophosphamide.  She had never had the last two before and had an allergic reaction to the Cyclophosphamide. When she would breathe in her nose would burn, her eyes were red and itchy and her face got swollen. The doctor slowed the infusion, but did not stop it. We ended up staying at the clinic for 6 hours, with Lily cheerful and talkative through it all. 

We met the home care nurse at this visit and she complimented Lily on what a wonderful personality she has, saying that she could be a comedian. Lily was telling stories and cracking jokes and startling the nurses with the dragon puppet she got at the Renaissance Festival. That night, the doctor sent her home connected to fluids through her IV.  Cyclophosphamide is irritating to the bladder and so needs to be continuously flushed from the body. They also gave her a drug called MESNA to help protect her bladder.  Later that night she was sick, but by the next morning was feeling better and ready to go again.

On Tuesday Lily was only given Doxorubicin, a creepy looking red liquid that turns urine red too.  Both of the new chemotherapy drugs can really lower blood counts, so on Wednesday Lily had to start taking another new drug called Neupogen to help elevate her white blood counts. This is given through daily injections, so I had to learn how to administer the shots.  This wasn’t easy for me; things like this make me so nervous. I wouldn’t even willingly set foot inside a hospital before Lily got sick, let alone inject my baby with scary drugs. Necessity has toughened me up though, and I am able to do what I have to do. I am glad that the doctor is allowing us to do all of this outpatient; often children are admitted to the hospital when they are given Cyclophosphamide.

Wednesday night Lily was not feeling well. She was sick to her stomach and that continued all day Thursday so on Friday I took her to the clinic to get her blood counts checked. They also gave her fluids  and anti-nausea medicine intravenously. Her blood counts were okay and the fluids and medicine really helped her feel better. She has been feeling good since and we had a really nice relaxing day today. This morning I pushed her around the trails at the Riparian Habitat and we checked out books from the library. It was great to be outdoors in this fabulous spring weather!

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.

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.