Post-Surgery

Sorry it has been so long in updating. Our lives seem to have been a whirlwind these past couple of months. Our home was getting some needed repairs, so we were displaced for a month. Also Ashlee and I were in and out of the hospitals every week until a couple weeks ago. And we have finally seemed to have gotten our lives back organized for the time being.

Ashlee had surgery May 20th in Salt Lake to remove the tumor. They had to remove 15 centimeters of her humorous bone, the rotor cuff and surrounding mussel and tissue. With her age so young they moved her collar bone down to her arm then took 7 centimeters of her right fibula bone to make up the difference and grafted the three together. It was a very long and stressful day to say the least. The she went straight to ICU for the night then on to the surgical floor the next afternoon. She was in the hospital for almost a week.

The the next week we were back down in Salt Lake for follow-up and to start her chemo again.

She is doing quite well considering what she went through. The results of the chemo so far had killed 92% of the tumor which they said was great. And they are sure they removed all of the tumor. So she started back up with the same type of chemo treatments and should be done with them by the beginning of November.

We head to Billings Monday for 4 days have 3 days off then back to Billings then down to Salt Lake. So the next three weeks will be very busy again.

This last round in Salt Lake she did really well and we managed to stay out of the hospital once we were back home. Last time, in April, we were in the hospital the week after we got back from Salt Lake for dehydration because of a sore in her throat from the chemo drug she receives in Billings. She completly stoped drinking and eating. It took about a week for it to get better so she would drink and eat. She also had to have platletes and red blood cells due to bloody noses that wouldn't stop. This time she had the bloody noses but we could keep them under control.

Thanks for all you prayers and support.

Started 2nd Round

Ashlee had her secound round of chemo in Salt Lake this last weekend, Thursday thru Saturday. It went much better this time. She didn't get nearly as sick. We got back home last Sunday afternoon. They have put her on Neupogen injections for 10 days. This will help her blood counts start to go back up more quickly when they drop. So hopefully she won't end up in the hospital for low white blood count (zero) this time. We have two weeks off of chemo, then back to Billings for two rounds and Hopefully mid May she will have her surgery to remove the tumer. She will not have to have any lung surgery at this time. They don't think it has spread but will keep watching them.

Sandi

March 25 thru 29th

March 25th we went to Billings for Ashlee's 1st round of Methotrexate. It is given for 4 hours then 24 hours later they give her Leucovorin to flush it out of her system. The Methotrexate can cause liver, kidney and bladder damage if its not flushed out right away. We were able to come home the 29th. We head back to Billings Thursday April 1st for another round of Methotrexate. She did really well with this drug. It didn't make her sick. So four days of just hanging out in the hospital. Then next Wednesday we head back down to Salt Lake to start the whole chemo round again.

Thanks to you all for your thoughts and prayers and gifts.
Love.
The Robinson's

UPDATE

It has been a whirlwind of a month. On February 27th Ashlee started her firt set of chemo in Salt Lake. One drug she is given for 48 hours straight called Doxorubicin and another drug eight hours apart for four hours at a time called Cisplatin. The Cisplatin really made her sick. She was throwing up for about a week and still has tummy aches. She was released fron the hospital March 2nd in the afternoon, so we started heading home. We arrived home March 3rd in time to pick Nikki up from school.

Nikki had a cold when we left and shortly after returning home it turned into broncitis. So with Ashlee feeling icky, Nikki with broncitis and everyone else here at home has had a cold. We all could use a vacation.

Ashlee has a CBC every Monday and Thursday. Her next chemo was to be in Billings on the 19th. But her blood count on the 11th was real low and the 13th she started running a fever so she has been in Livingston Hospital since the 13th and was able to come home last night.

So next week if all is well we go to Billings for her next chemo which is Methotrexate. It is a 4 hour dose and then we stay until that drug is flushed from her system which they say is 3 to 4 days. Then a week later we go back to Billings for the same treatment. Then start the whole process over again in Salt Lake.
Each round is supose to be about 5 weeks depending on her blood counts and any delays like this week. In about 7 to 8 weeks she will have surgury in Salt Lake to remove the tumor and then if this chemo process is working correctly she will have 6 more rounds over chemo.

Thank you all for your prayers and gifts.

Tests Results

Yesturday she had a full body bone scan and chest CT. The bone scan prelimanary results didn't show any other tumers.

Today Ashlee had a biopsy -- She has Osteosarcoma which only involves her right arm and possibly can go to the lungs. They implanted a IV port in her chest. So now her arm and her poor chest is sore.

Tomorrow she has an Echogram and hearing test done for a base line because the chemo can affect those two. Then she will start the chemo. Her first session is 48 hours.

She will have part of her chemo herein Salt Lake and hopefully part in Billings. Each month she will have to come back to Salt Lake.

After two months of chemo, they will do surgery to remove the tumor then she will have another six or so months of chemo. They say the whole process will take about a year.

Made it to Salt Lake City

Got into Salt Lake about 5:30 Today. Just a little bit of traffic. (wow)

Ashlee did ok on the trip, but she is in a lot of pain.

We see the Doc tomorrow at 1:00.

Pray.

Contact Information

If you would like to mail something to Ashlee.

Ashlee Robinson
216 E Clark St
Livingston MT 59047


If you mail a money order or check, please make it out to Ashlee Fund.

(Name Change) Osteosarcoma

O.K. Here we go.

On Thursday the 18th of February, Ashlee Robinson, age 4, my youngest daughter, was diagnosed with Ewing’s Sarcoma cancer. A type of bone cancer.

She has a tumor about 4mm wide and 18 cm long on her right arm starting at the shoulder and going toward her wrist, and it is in the bone itself.
The first step is to take her to Salt Lake City and have a couple of biopsies done and a full bone scan to see how advanced it is. We will then have a game plan.

Best case scenario is.

They remove it. She does chemo, and we win.

I don’t think I need to go into the worst case scenario.

We have set up this blog so that our friends and family have a place to follow us on this journey.

We will be going back and forth to Salt Lake as many time as needed. I have put Donate Buttons on this site per request from people wanting to help out with travel expenses and what ever else Ashlee needs.

If you know me, then not much explanation is needed, on how desperate and determined I am to get my baby cured. “Every Dollar Counts” Has a whole new meaning in this family. We need all the help we can get. (prayers,funds,happy thoughts) everything helps.

If you do not know me, ask the person that directed you to this site. They will be more than happy to tell you about me,the Robinson family and Ashlee. It is impossible not to love that child.

We leave for Salt Lake Monday the 22nd, and her first appointment is on Tuesday.
We do not know how long we will be there.

I will up date the blog as we go.

I beg you,,, only happy thoughts for her please. And if you have children, stop right now,,,, go hold them until they beg you to let go, then hold them a littler longer.
Thank you.
All for now.
Daniel