Rhabdomyosarcoma

I wish this word was the name of some ancient dinosaur. I wish it were a word that remained in medical journals. I wish it weren't a word that I am going to know everything about.

rhab·do·my·o·sar·co·ma /ˌræbdoʊˌmaɪoʊsɑrˈkoʊmə/ Pronunciation Key - Show Spelled Pronunciation[rab-doh-mahy-oh-sahr-koh-muh]

You can even hear it pronounced HERE by pressing the audio icon. Although I'll warn you that hearing it out loud doesn't make it any more believable.

Rhabdomyosarcoma is the name of the tumor found in my little boy Jacob. It's why he had to have surgery last Thursday to have it removed. It's why he had to withdraw from swim lessons and sit the rest of basketball season out. It's why he's not allowed to ride his bike or play too rough. It's why his baptism is being postponed to an unannounced date.

Rhabdomyosarcoma broke my heart, spun my head around with a million thoughts and questions, and immediately changed the way I feel about each moment.


How did we find it and when?
During a routine check up on Monday, July 21st, Jacob's pediatrician noticed a mass and sent him for an ultrasound that same day. By 4:30 p.m. that afternoon we were sitting in a urologist's office. The ultrasound confirmed it was a tumor not a cyst or mass that would just go away. Next we scheduled CT scans, blood work, & surgery to remove the tumor. Later we sat together at Golden Spoon Frozen Yogurt watching Jacob pick out mini gummy bears, lick them clean, and stack them on a napkin.

Tuesday we had to call our parents. Heartbreaking. Nothing worse than being the bearer of bad new. It was also our 11th Wedding Anniversary. We had already purchased tickets to see Wicked at the Pantages Theater. At that point, all we could do was worry and cry - we did both - so we went to the show too. Happy Anniversary to us! I will say how grateful I am to be in a strong marriage. Who could have known eleven years ago the joys and oppositions we would face together. Thanks to my Jon for being mine.

Wednesday was fasting, waiting, scrambling with insurance and paperwork issues, testing, and waiting some more. Jon took Jacob at 6 a.m. and they didn't get back until after 2 p.m. James & I packed for an emergency beach trip (upcoming post). We all needed to feel the ocean breeze, play, swim, roast, & be together.

Thursday was surgery day. Jacob received a blessing that morning. He was admittedly scared, but he put on a brave face. Things went well. We left for the hospital at 10:15 a.m. and didn't return until 8:30 p.m. Both Jon & I were by his side all day. The staff at the surgery center was so kind and congenial. They put us at ease and for the record - I hate hospitals. Always have. Never wanted to marry a doctor. We were so relieved that the CT scan was clear - meaning that the tumor hadn't spread anywhere else. We went home that evening with a preliminary report that the tumor was a rhabdomyosarcoma. A pathology report would come next week to help in staging and prescribing treatment. For now we are thankful that his malignant tumor is in a "favorable" location, that it was found early, and that there is treatment. We are grateful to go home and rest. We take it a day at a time and this was a very long day.

Friday was a resting day - movies, video games, etc.

Saturday - Jon asked Jacob to be his assistant coach for the basketball team. He suited up and held the clipboard on the sidelines. We also attended our Pioneer Day Celebration and fielded questions for our concerned friends. We are surrounded by wonderful and caring friends; the best.

Sunday - Jacob gave his talk in Primary about being a missionary like Ammon. He helped me make homemade chicken strips. He liked smashing the crackers (very therapeutic) and mixing the crumbled coating.

Another Monday - please wait for the upcoming Slap in Your Face Post. YOU'VE GOT TO BE KIDDING ME!!!!

Tuesday - Jacob insisted we take our picnic. I had him in the sun during swim lessons and then again at the park. We played frisbee golf which was fun. He's running around like a crazy. I have to keep inviting him to come help me with things (like make dessert - he's not interested in doing any real work) so he'll stop trying to play basketball and stuff.

Wednesday - We had our follow up today with the urologist and then were sent to meet with the oncologist - another LONG day. I'm not going to update this blog with all the medical details- except to say that this is a STAGE 1 GROUP 1. The embryonal rhadbomyosarcomas are treatable. We will be returning to the hospital as early as next week for a few tests and to receive chemotherapy (a medicine that helps find the bad cells that want to make tumors in your body). Jacob might have to stay overnight for a few days. That's it - you don't get to know more than Jacob does right now.

Your concern, love, and prayers on our behalf are felt and appreciated.

Now, remember to kiss your babies. Look at them. See them. Tell them you love them even if they can't bare to hear it one more time.



Helpful Reads:
THIS handbook
THIS entire site has helped me a bunch
I also found THIS site helpful