This is Not the Post I Planned on Posting

I was supposed to post Disneyland pictures, but the camera is at the hotel with Ryan and the four boys. William and I are in the hospital and have been since Thursday morning. Total BUMMER. Bummer. Bummer. Bummer.

We spent Saturday, Monday, Tuesday, and Wednesday at Disneyland and had a great time despite the expected tantrums, whining, and continual begging for overpriced Disney paraphernalia. Thursday morning as we were getting ready to check out of our hotel and head to Newport Beach until Sunday, William began to complain of severe chest pain and that his ankle which had been hurting during the week was getting worse. The chest pain was mild during the week and came and went periodically and I figured it was probably just sore muscles from the pushing and pulling motions while holding on on roller coasters. He never really complained a lot. His ankle was bothering him, but only appeared slightly swollen on Monday. We iced it each night and again, he spent most of the day in the wheelchair. I attributed the pain to possible overuse as he is just starting to be more active---maybe a possible mild sprain---he had no discoloration. However, when Thursday’s complaints seemed more intense, I called UCSF since chest pain isn’t something to really brush aside. We were sent to the ER at Children’s Hospital of Orange County (CHOC). I was already familiar with this hospital since it was part of our emergency plan, if needed.

Blood labs quickly determined anemia. He had low hemoglobin and needed a transfusion. Then he spiked a 102.5 degree F temperature. That earned us an official admission. 24 hours later, and after many labs were drawn trying to determine the source of the fevers, elevated levels of something in the blood indicated his body was fighting something somewhere. But what? And where? The ankle began to be a focus of attention. An x-ray revealed a possible fracture on the tibia, but was somewhat inconclusive. The orthopedic doctor ordered an MRI to rule out a bone infection, osteomyelitis. His MRI was at 8pm Friday night. At about 11pm, as Ryan was about to leave after finally bringing me a change of clothes (I had been suffering in a skirt for two days!) the orthopedic doc came in our room to inform us that the MRI showed a very obvious mass in the left tibia.

Our hearts sank. Really sank.

Mass is now an official bad word in our house.

A biopsy needs to happen to determine what it is exactly. But the doctor feels like it is best to begin this new process at our primary treatment center as soon as possible. He was discharged at 1pm today and we will head back home tomorrow and check in on Monday to the hospital at UCSF. There are a lot of unanswered questions and lots of phone calls to be made to coordinate appointments and treatment. We are trying not to jump to any conclusions and take each day one at a time.

Today we are going to spend this afternoon together at the beach, cherishing the good moments and making happy memories.

TO THE BEACH.....!!!

Farewell, Broviac

You will not be missed.

It is done. It is out. Hooray. Hooray. Hooray.

Sunday morning the doctor removed William's broviac in a quick procedure. The black line on the tubing is a thread that was about 1/4" outside his body. The red mark is a cuff that was just under his skin and secured the broviac in place. The surgeon made a small incision to his existing hole to detach the cuff and then pulled it out. I am amazed at the length of tube in his body. It wasn't what I had pictured in my mind. No stitches were used to close the wound. A simple dressing was put on it and we were told the skin would seal in about two days and at that point he could finally swim.


Due to the infection, he has to remain at the hospital for 48 hours after the procedure to receive I.V. antibiotics. He now has an I.V. in his hand and is not a fan, but it's better than the alternative. He will hopefully be discharged on Tuesday.

Let the countdown to a lot of splashing begin!

Going Out Kickin' and Screamin'

That would be me. Not William. That boy is so patient and calm and resilient. The light at the end of the tunnel is just a little farther than we thought and I'm frustrated. And we're still waiting for the fat lady to show up and start singing.

Saturday, 7:00 am, the call came from the hospital. Blood cultures positive after 24 hrs. William must come back to be admitted. Darn it. But I had slept restlessly anyway because the 24 hour mark was at 3 am and I was expecting a call at 3 am with a positive culture finding. That's the realist in me.

The biggest bummer of this whole ordeal is UCSF gave William 4 tickets, 7th row, to the Giants vs. Dodgers baseball game tonight and he had invited 2 friends to go with him to celebrate finishing his treatment. As I drove to the hospital I thought, "They can pull the broviac today, give him a dose of antibiotics and send him home on oral antibiotics and since it's early, there may be a chance he'll make it out in time to make it to SF for the game. Or maybe they'll give him a dose of antibiotics and let him go to the game and come back tomorrow." Then I realized how completely ludicrous those thoughts were because nothing moves in a timely, predictable manner in a hospital. A positive culture typically means 10 day of I.V. antibiotics and even if I could convince them that I could administer them at home, he is usually kept in the hospital until the cultures are negative or he is fever-free for 24 hours. Oh well. Sometimes I need my thoughts to entertain me and keep the optimist in me alive.

After the doctor's here consulted SF, it was decided any scenario that got him to the game was not possible. I get that. His safety/health isn't worth unnecessary risks. The risk of sepsis (blood infection) is high, especially with a broviac. We were informed his broviac couldn't be removed until Monday at the earliest because the low staffing on weekends and the surgeons typically only do scheduled weekend procedures and emergencies. Evidently my emergency is not theirs. Home antibiotics aren't possible because the home health agency is closed on the weekends and wouldn't be able to complete the order for home meds until Monday. I broke the news gently to William. He got teary, but I promised him his dad would take him to another game, but the seats may not be as good!:) He's so good.

Oh, and did I mention his broviac could have been removed last week? Due to the Monday holiday last week, the time slots for oncology procedures were full from those unable to be performed on Monday. We have this bad luck thing with weekends and holidays. And just when we thought it couldn't get worse, we got stuck in the quad room. Ugh.

And just when we thought it couldn't get worse than that...I'll spare you the details on the less than kindred spirit roommate situation. Let's just say that I'm glad the Benedryl knocked out William for several hours so he missed the graphic language lesson. I even tried plugging my ears.

Now, I'm happy to report some good news. The wonderful, understanding oncologist, in her infinite wisdom, thought to mention William's case to the surgeon today so she could get him on her radar for a possible Monday procedure. The surgeon's reply went something like this. "Oh, I'm not busy this weekend. I'll do it tomorrow. " She then stopped by our room and asked, "How does 9 am sound?" Beautiful. Marvelous. Perfect. Thank you. Thank you. Thank you.

William will have a peripheral line placed to continue I.V. antibiotics for 1-2 days. (We're hoping for one day). Then he can be sent home on oral antibiotics since his risk of infection is much lower without his broviac. So here's to hoping for a Monday night or Tuesday discharge!

William can't wait to run his hand over his chest and not feel any tubes, soak in the tub up to his neck, and jump in a swimming pool. I can't wait for bedtime to come and not have to flush his lines, do a dressing change, or change his caps. Then maybe I'll do less kicking and screaming and more singing and dancing.

It Ain't Over 'Til the Fat Lady Sings

Wanted: One singing fat lady

William has been more tired this week than I remember after past treatments. It's hard know whether to attribute this to his treatment, school, or a little of both. He has also had pain in his sternum and shoulder. This pain is likely due to the GMCSF injections he has been getting nightly to stimulate white blood cell production so his body can attack any cancer cells that the antibody treatment flagged as bad. Bone pain is a common side effect. So are fevers.

Last night he spiked a 101.4 degree F fever which necessitated a call to UCSF and confirmed the assumption that we were headed to the hospital to get a dose of antibiotics. William and I headed to the ER around 11:30 pm. It is a sad commentary on this lifestyle when I was actually glad it was happening in the middle of the night because it created the least amount of disruption to our family. And it's pathetic that I didn't even pack a "just in case" bag since I was that confident of exactly what the treatment plan would be. I just grabbed my purse, book, phone charger, hospital notebook/briefcase, and William. I really shouldn't be so confident. Have I really not learned that yet?

Thankfully, as expected, labs and blood cultures were drawn and a dose of antibiotics was given. The best part was our favorite nurse, Lynn, was the charge nurse on the oncology floor last night. She came to the ER and took care of us the whole time since the ER was a little busy and they also aren't trained for dealing with broviacs. Plus, she was stuck on one level of Angry Birds and needed William to help move her progress along. It was a hard sell to get him to agree to that! ha! Thanks, Lynn, for the great company and personalize treatment! It was like having our own private nurse! We all need one of those. Especially in an ER!

We returned home around 3:30 am and I counted my many blessings that it was Friday. We are going to have a low key day around here.

Last Scheduled Hospital Stay. Check.

After spending Monday through Friday at UCSF, William completed his last antibody therapy treatment!

We celebrated!

He still has two more rounds of Accutane to complete and then the post-treatment scans, labs, and bone marrow biopsy will occur in mid-October. He will be re-staged at that point and we are praying to finally hear the words "full-remission"!