Friday, January 25, 2008

Going, Going, Gone!

When we found out that Rachel had cancer I thought one of the toughest things we would have to do is shave her head. I was wrong about that. The tough part was watching clumps of hair fall out everywhere and feeling helpless to stop it. On Tuesday, Rach woke up gagging on her own hair so we decided it was time to have a "shaving party". Uncle Shane and Grandpa shaved it off and Rachel doesn't seem to be bothered by it at all. It doesn't bother me as much as I thought it would. She has many cute hats and received a whole bunch more from Travis & Robyn (thanks!)so we are having fun accessorizing!

Playing Around the House

Snuggling with Mom and Cousin Callie Posing with cousins Cade & Callie

Reading a story with Grandpa Malford
Eating with GJ

Sunday, January 20, 2008

A Different Diagnosis

This week we finally got an official diagnosis. We have been very impressed with her doctors they are very thorough and never stop asking questions. They have consuled with doctors from St. Jude's, Children's Hospital LA, Johns Hopkins, and Texas Children's hospital to determine what she had. It's very rare for brain cancer to begin in the spine like Rachel's so they had trouble narrowing it down. They have determined that she has a very rare and aggressive form of Medulloblastoma called a PNET (pronounced peanut). She doesn't fit the description of anything perfectly but they decided that's the best diagnosis. The doctors at St. Jude's helped to determine her course of treatment so we feel confident that she would receive this cocktail of drugs anywhere else. This form of cancer is slightly better than Ependymoma but still as scary. She has a little better chance with chemo working on PNET but the survival odds for her age group are not good. We do know that the cancer is only in her nervous system and has not spread to the tissue or other organs. They also did a biopsy on her bone marrow and there is no cancer in her bones either. If the chemo doesn't work we will probably end up doing surgery and participating in research drugs at a place like St. Jude's. Her doctor told me that all of the pathologists and oncologists that she spoke to are fascinated by Rachel and following the case closely because it is such a rare one. The more doctors and opinions the better! Keep praying for Rachel because I think that this new diagosis is definitely more hopeful than the first so the prayers are working!

Chemo Sucks!

This is a picture of Rach fussing in her bed after her first round of chemo. She has had two now and it definitely has crappy side affects. She has vomitted a few times, she is achy and moody, and somedays barely has an appetite. Treatment days are on Wednesdays and it is an all day doctor's visit! I have decided that the worst days are Fridays and Saturdays. She has the most trouble eating and wants to be held or be in bed almost all day. The rest of the week she gets better and then we knock her down again on Wednesday. We found out last week that she is neutropenic which means that she has no immune system right now. This is normal after the first big dose of chemo and her immune system is rebuilding itself with the help of a shot that I have to give her every morning. She can't go anywhere without a mask on, and she won't keep it on, so we have to be very careful about germs. Needless to say, she only leaves the house to go to the doctor! She receives chemo weekly and once a month has to be hospitalized for the big round of it. This cycle will last for 12 weeks and then we will know if it's working and what will come next in her treatment.

Hanging out with the fam

Posing for a family pic with Grandpa, GJ, daddy & Mimi
Laughing at Mimi Not sure about cousin Callie sitting on daddy's lap. Rachel does not share her parents well!
Taking a nap with Daddy and Sweetie.

More hospital pics

Riding around the 8th floor in the playroom's wagon Laughing with Grandpa Playing with Jenny

Visiting with Amber

Friday, January 11, 2008

First Round Of Chemo

Rachel has been back in the hospital this week. She got a port put in on Tuesday which provides easier access for blood work and IV meds and fluids. She also had a bone marrow aspiration which came back negative for cancer. After getting many opinions from various renowned hospitals across the country, they have decided that this cancer may not be ependymoma. They are throwing around many ideas and as it turns out, this cancer isn't fitting perfectly into anything. We are hoping for a new diagnosis of a cancer that responds better to chemo. She did start chemo on Wednesday night and seems to have handled it well. They have amazing medications to help combat the side effects of the chemo drugs. She is eating good, hasn't been too sick and we are keeping her pain under control. She gets to go home from the hospital today (Friday). Her white blood cell counts which provide immunity are not extremely low yet so it is safe for her to be around healthy people so she had a few visitors this week. Thanks to everyone for all of the cards and presents and prayers.Looking at the pictures from cousins Abby and Natalie. Thanks girls! Rachel hides behind her stuffed animals when new people come in the room so this puppy from Aunt Lori is working perfectly for that. Playing in the playroom with crazy cousin Cade. He is overwhelming sometimes so she let him play and kept an eye on him.
Reading a book with GJ. Rachel even allowed Cade into the bed for a little while as long as he didn't try to take her toys.
Playing with Aunt Beth

Visiting The Park

Thursday, January 3, 2008


We finally got the results from Rachel's biopsy today. The results were not as great as we had hoped they'd be but it's not hopeless. Rachel has Ependymoma a rare form of brain cancer. The best ways to treat are surgery and radiation but Rachel doesn't qualify for either of those. The neurosurgeon is looking at possibly removing the tumor from the spine but that won't take care of all the cancer. Our first approach at beating this is going to be chemo. She will start at the beginning of next week. The odds are 50/50 that the cancer will respond to chemo. Our hope is that it does and she will continue on with chemo until she is 3. At that age, she will be developed enough to receive radiation therapy. We are definitely trying to stay hopeful but this is going to be a tough cancer to beat. The odds over the last 25 years are that 1 in 4 kids have survived it. We're praying really hard that Rachel falls in that 25%! Please keep praying for us we need it right now. Rachel has recovered well from her surgery and today she got to play and move around all over the hospital floor. She is in very good spirits and you can't even tell anything is wrong. I'll have to post pics later because they are in Michael's camera at the hospital.