Spring time

On Monday we went to Shriner's Hospital for Echo's third leg since her surgery August 3,2010. I remember her walking those halls for the first time after receiving her cancer diagnosis. I felt as proud and excited as I did watching her very first steps as a fat baby. This feeling is amazing. Then this time when she received her new leg I saw just how much she had grown! All of this brings tears of joy to my eyes. Thank God for my little angel's recovery and all the wonderful people he put in our life to help her to get to where she is today. Her chances of reccurance are getting smaller with each negative work up. She is 17 months in remission now. Her next scans should be this month. Now after her appointment Monday I took her back to school and got a chance to talk to her teacher for a minute Mrs Senter. She is amazed at how advanced Echo is in reading and math. I am so proud of her hard work. She brings home papers with a 100% on them every week. I know she will continue making a difference in this world : ) This Spring Echo is attending gymnastics lessons again. She has learning to do but loves the class. Andrew is playing outdoor soccer for his first time. He has skills to learn as well but tries hard out on the field : ) Lucas is playing his very first team sport Coach Pitch Tball which is just adorable. All those little kindergarteners out there trying to hit balls and run bases just too cute lol. They are all getting anxious for Summer. Hope I can keep them busy then!

Wow 2011 already! LOL!

I haven't posted anything in such a long time because of ya know life : ) When Echo was first diagnosed and early on in her journey I spent all my spare time online searching for good news anything positive. I didn't really find any. I told her Dr. that and he said maybe it is because people only reach out during the hard times. Reading through my old posts I believe that is pretty true. After Echo's surgery on August 3, 2010 thing's started getting better and then even better! Chemo came to an end two days before Christmas (how great of a gift is that!) and she got her new little prosthetic leg. Then she started 1st grade in January of 2011 and is doing incredible; made friends quickly, perfect grades, and of course she loves it!! Took Echo in for follow up scans and they came back clear CANCER FREE ECHO!!! She had her port removed shortly after her 7Th birthday. Her pretty hair is growing back. I couldn't be happier with where she is at now : ) Make a Wish came out on April 2 and did such a wonderful beautiful job on a playroom makeover for Echo which is now where she prefers to spend her free time. Echo has scans and blood work due right now so I will try to keep updating you all with our happy happy news.

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.