Drawing closer...

Here we are in July already. Sometimes it feels like only a day has passed since Echo was diagnosed, others it feels as though we have been going through this forever! The range of emotions is crazy. There is good news always sprinkled with bad. Today I am having a bad day trying to cope with everything. My poor girl is feeling real lonely at the hospital today while I work.

We meet with her doctor, who will do her surgery, this last Tuesday, Dr Jones. I really appreciate him talking to me and answering all my stupid questions: ) It is hard to ask questions when you aren't really hearing all of what is said from shock and such. I know nothing about bones and a lot of the words I don't understand. Anyhow her Dad did not come to this appointment? Well he gave me three options for surgery which most likely will be on August 3-

1:Amputation
2:Allograft or autograft
3:Rotationplasty

Echo's cancer has a small chance of recurrence no matter which option we choose. None of the options will be without complications, a LIFETIME of complications because she is so young. But did you hear that word I just mentioned LIFETIME? She will be alive. The hardest decision so far in my life. I am going to educate myself as much as possible, reach out to other families who have made these decisions, and pray for guidance.

Echo is currently in the hospital getting her chemo and all is going well with that this time. By "well" I mean she doesn't eat, got some ouchy cold sores, has many accidents, and has had a little pain. It could be and has been worse so this time is going "well". I wish I could take this all away from her she is my angel that's all.
Only one more round before surgery.

One website that has been extremely helpful!! Check it out for all your answers.
www.liddyshriversarcomainitiative.org

Having fun 'n enjoying Summer

Echo did not get out of the hospital in time to make it to her Hope Kids events but we did have some fun since she has been home. She now has a walker she can use for short distances. It is great cause she feels like she has more freedom but she is super s..l..o..w! So if we are crossing the street in front of your car I apologize for the length of time you will wait. LOL. We played in the yard splashing in a new pool Grandpa Mark picked up for the kids. The weather has been so nice for playing. The kids wanted to wash my car to earn Mommy Money and let me tell you it looked nice (well the bottom of the van did). Me and Echo went to a fairy party for her friend Mia. So lovely, she is still talking about it. Then we visited the fire station and they had just baked the best chocolate chip cookies I have ever tasted.
We love the summer : )

Well on the way : )

Echo was up at Primary's bright and early Monday morning to get her MRI. Only we had to sit and wait for almost 3 hours!! They gave her Presidex? (not sure how to spell that)but it worked alright with Versed to allow Echo to have a very loud MRI performed on her leg. She was my little Sleeping Beauty for a few hours afterward which was nice seeing how little sleep she gets in the hospital. Then we went upstairs where she had urine and blood tests performed before she could start her chemo this time. All good even her weight went back up!! She started chemo and we hung out all day and had fun together. She told me it was the best day ever in the hospital. I was so happy no headaches, fevers, nausea, constipation, nothing. Oh, the things that excite me now. LOL. Her night nurse came on and she said, "I am in the mood to keep things going and have the best night ever in the hospital." LOVED HER! We had the best night ever in the hospital she was able to get up herself all night long and pee in the commode not in her Goodnights which I would interpret as she was not knocked out by all the Benadryl, Phenergan, Ativan, etc as she was on her previous admissions.

Well we did not get to talk to her doctor as scheduled on Monday but he did come Tuesday and talk to us. Dr Barnette said her MRI shows great progress in the soft tissue surrounding the bone which will make surgery a lot easier when we get there. He printed pictures for me I should try to get them on here to share with everyone. So the tumor is measuring about 9cm x 5cm Dr Barnette said it originally measured 20cm x 7cm. The bone does look worse in the main center of the tumor but we are taking that bone out anyhow. Good news is she will see Physical Therapy this week and start partial weight baring with a walker!! I think she will be so happy to get some of her independence back though I know it will wear her out as well. Nothing but smiles from my pretty little girl and a few from me too.

Love you all and thanks for keeping us in your thoughts and prayers : )

BTW after this week Echo will have two more chemo treatments (which will be every other Monday so that should equal one more month) and then we will start talking about surgery options. I know whatever comes her way Echo won't let nothing hold her back from being the best.

Been awhile...

Just a quick note to update everybody-Echo had a blood transfusion on May 28, 2010 that worked wonders on picking her back up again. She was tired, pale, and complained of "the worst headache ever." We then went in for Round 3 of chemo on June 7, 2010, yuck! She had a reaction to the Phenergan so the doctor dc'd it luckily with no additional nausea. While in the hospital Echo had an x-ray done on her femur I believe it was prompted by us asking when they think Echo can walk again. The radiologist said in his report he believed it was "progression of disease." One of her doctors, Dr. Jones, said he doesn't believe that and he has ordered a MRI on her next admission Monday, June 21. It was a huge blow to hear her tumor has not responded to the chemo therapy yet. Echo can not walk at all yet though she is able to crawl which unfortunately has brought back her pain! She has lost weight, puked quiet frequently, and endured so many headaches, basically it has been real hard on her! Wish us luck with finding foods she WILL eat and that her blood counts stay up. Keep her in your prayers for her MRI please. Thank you!

Round Two

Echo's hair was falling out like crazy bad and bugging her so last night at 8:00PM she decided it was enough and wanted it shaved off! She was smiling and laughing the whole time while the ladies shaved and washed her pretty head. She has a real cute head and she looks beautiful : ) I almost got a tear but she was laughing so hard I couldn't. Love her so much. Then we went to get some stuff for her chicken and cheese taco craving and she ripped her hat off at the store and said "I am bald!"

Today is the first day of round two of chemo. She is doing two different drugs this time so hope and pray these ones are easier on her and we find the right combo to relieve her pain and nausea. I can't wait to get off work at 4:00 and spend the night with her.

First Month

As many of you close to us know my daughter Echo was diagnosed with Ewing's Sarcoma. Many people have asked how did we found out? Echo has complained of leg pain for over 8 months. We took her to her PCP who said it could be growing pains. Sounded likely since she was a beautiful, smart, and healthy 5 year old princess. So I would give her Ibuprofen and a heating pad. A couple months later I called and asked if we could use something like Bengay because she was still hurting and also crying in her sleep. Not much relief came from that either. Jeremy and Brandy suggested getting an x-ray and second opinion. I have felt the same but struggle with time and finances being a single mother. Finally I took her to an insta-care on April 19 were they said her x-ray was fine then sent us home once again. Only the next night the doctor from the insta-care called her voice sounded a bit panicked she told me to get her to a doctor and kinda soon. So April 20 we took her to the ER at Primary's were they x-rayed the rest of her leg. Sure enough there was something wrong this was the scariest night of my life. We were admitted to the hospital real fast with a biopsy and a port a cath placement, MRI, and CT scheduled for my daughter. They kept saying they thought it was Ewing's but couldn't give a 100% positive diagnosis yet. I wanted so bad for them to tell me it was an infection, a fracture, something she could easily get over. But no it is Cancer.

We were sent home on April 23 with Echo in a wheelchair and told she can't walk on that leg anymore. Echo was to come back in on April 29 for a Bone Scan in Nuc Med and an Echo cardiogram. Then our first clinic visit were they told me she might not be able to have children and may get heart damage from the chemo. We had another scare on May 4 we were asked to bring her in immediately for another biopsy which had been the worst part (so far). Then Echo and I got to the hospital only to find out they DO have the 100% sure diagnosis of Ewing's Sarcoma in her femur bone.

Wednesday May 5 would be the first day of her chemo therapy. This was not easy or very fun hell none of this has been. Echo got sick from the chemo and puked, she peed the bed which she NEVER did before, she got super grumpy, whinny, and lost her healthy little appetite. She was in pain. So hard to imagine this being our life now. On May 8 she was discharged to home with Dad. I got to pick her up that night and spend Mother's Day with her : ) Only a home health care nurse came out to our house and gave her a shot of Neulasta which is a painful white blood cell booster. She was mad at me and the nurse.

Thursday May 13 I got a call while at work from Wendy (Ryan's Mom) that Echo had a fever of 104 (thankfully the fever was really 100.4) and she had been puking only after the home health care nurse came to draw labs and noticed something should be done about it. I went to the ER and she got admitted again to the hospital. Her counts were down to 100! So antibiotics and labs were our plans for the next three days. Saturday May 15 we went home and her count then was up to 1300!! We have started to notice small amounts of hair falling out already. I say small but it feels huge. She cried when I showed her a picture of another girl who is going through the same treatment for the same cancer.

Today home health is coming out to access her port for lab draws and to prep for her second round of chemo. It will be two different drugs this time so I hope we can find the right combination of medicines to make Echo feel alright in the hospital.

I want to thank everyone who has been here for the kids and I and showed such support and love. It means the world to us. It has been a huge emotional struggle for me, Echo, and of course the boys. I could not do this alone. THANK YOU and LOVE YOU!