Bad hair day

Today Anthony's illness and everything connected to it became really real.

One of the side effects of Chemotherapy and the Neupogen injections is hair loss.

The hair was literally coming out by the handful, so Anthony decided to buzz it.

Why is it when you see something it seems more real?

He went from McDreamy to Mr. Clean in one day.

At lease he can rock the bald head.

Low White Blood Count

Anthony went in for his second round of chemotherapy today as planned, feeling ready for the process. They started out, like they always will, doing a blood work up to make sure all counts were within a healthy range. One thing they check is White Blood Count (WBC) which "are cells of the immune system involved in defending the body against both infectious disease and foreign materials," in other words this is what fights off infection and keeps us healthy. A "normal" white blood count is between 4.0 - 10.5 with 1.5 being a danger zone... Anthony's was 0.1 This means he has a 28% higher risk of contracting a life-threatening infection. In other words, if he has a hint of a fever we need to book it to the ER because his body can't fight ANYTHING off right now.

The nurse said a drop in WBC during chemotherapy is sadly normal, and told Anthony he could not have chemo until his WBC had risen. To aide this process he was given an injection of Neupogen, a white blood cell booster, and is now miserable. The main side effect he is feeling is a "stabbing pain in [his] spine," which makes it difficult for him to get comfortable. He has been in the chair, in the bed, on the floor, walking around, standing still... nothing helps. Maybe we'll try the car? Neupogen injections age given once per day for three days. On a Lymphoma internet forum Anthony found some guy who had to take 12 Vicodin to manage the pain. Our nurse suggested Tylenol.

However, next week after Chemo and every week thereafter, he will be getting a Neulasta injection. Neulasta is also a white blood cell booster that "helps reduce the risk of infection." Worth $7,000 per injection? You read that right. Seven more injections at $7K = $49 thousand dollars. My entire year's salary would cover 4 injectons. Luckily there's a financial application for the Neulasta which, if we're approved, will cover all but $50 per injection. Oddly enough, anti-nausea/infection fighting meds before chemo and the Neulasta injectons after are both more expensive than the chemo meds themselves. The financial advisors have been really helpful as far as getting us various financial applications for various medications.

Our current schedule is a Neupogen injection at 2:00P Thursday and 10:00A Friday, an appointment with the Oncologist at 10:20A on Friday, and try to have chemo again on Wednesday and if that works the Neulasta injection will be Thursday afternoon. We are blessed to live 22.6 miles from the Peggy and Charles Stephenson Oklahoma Cancer Center.

It Must Be Love...

Here is a photo of our sweet little Ella. She is so good. Abbie loves to hold her and Ella is really good about it. Isaac comes along and pats her head and kisses her every once in a while. He also smiles at her and makes cute noises at her.

Mom and Dad came to visit one day...so sweet.

No we didn't leave Ella home, she was just sitting below us in her car seat. I think the cute lady that took the picture thought we were just carrying it around with us.

Pinterest...one of the best recipes for finger paint, 1/2 white glue and 1/2 shaving cream + food coloring = lots of fun and easy clean up (the shaving cream acts as a soap). This was a just getting started picture. The after picture would show all the "paint" gone and the entire picture and that table area completely painted. =)

Baby Isaac!

On our way to the park. So cute!!!

It is official, my 2 favorite holidays are the 24th of July and New Years Eve. If you have never been to Eva and Bryan's for their New Years Eve party you might consider it, its the best party of the year!!!

PowerPort & test results

Recently Anthony had a bone marrow biopsy, Muga and PET scan, all previously explained here. Results; bone marrow biopsy was clean, Muga shows a perfectly working heart, and the PET scan showed the only conclusive cancerous cells are the ones in the mediastinum (the tumor originally in question). He also has an upper left lobe infection in the lungs, and some of the other lymph nodes had some potential growths, but that was inconclusive. So, they'll be treating the Hodgkin's Lymphoma as if the large mediastinal tumor were the only one.

On 1/6/12 Anthony had a PowerPort installed. The port itself is placed below the clavicle, and the catheter is drawn up the neck and inserted directly into the Jugular vein.

Triangle nubbs can be felt through the skin, needle inserted in center.

1/6/12

1/15/12

1/11/12 was the first Chemotherapy session. Two sessions equals a cycle and Anthony will have four cycles, so eight treatments total. He's on the ABVD regime, which is explained here along with possible side effects. Some side effects already experienced are nausea, fatigue, sore mouth, taste changes, numbness in hands, and discolored urine. Hair loss/changes are expected in the next few weeks. Because Anthony has such thick hair he may just have thinning and will not need to shave his head. We'll see what happens.

The nurse had Anthony chew on ice during the Adriamycin administration as this could lessen mouth sores or blisters.

We have an appointment with the Oncologist, Dr, Ikeguchi on 1/23 and the next Chemo session is 1/25. Along with all the negative side effects there have been some positives noted; Anthony's cough has 90% cleared up. Dr. Ideguchi said that might happen.

Biopsy results: Hodgkin's Lymphoma

We've previously written about Anthony's ER visits and tumor here and here and here.

We had airfare for Utah for 11/30-12/4 for the Mills Family Christmas Party and figured we might as well see Dr. Bull (Chief Cardiothoracic Surgeon at University of Utah) while we were there.

We left OKC, OK at 6:50am.

and flew into SLC, UT at 9:50am and the appointment was set for 11:00am. Anthony's parents picked us up from the airport and we headed to the medical center. Dr. Bull talked with Anthony for a while, and suggested he have a biopsy... which was weird because he's previously told us not to get a biopsy. Turns out, he just wanted the procedure done where there was more equipment and what not... and he didn't want anyone else to touch it. The nurses asked our availability for the following two days in an effort to schedule a biopsy and sent us to the lab for blood work while they figured out schedules.

At 12:45, waiting for Anthony's turn in the lab, the nurse told us they figured a biopsy day and time... 2:00 that same day. Tender mercy? Anthony was so nervous going into the biopsy, as it was a CT guided biopsy and he would be AWAKE while and gigantic needle was shoved into his chest.

The big needle was the size of 3 IV needles together, then a smaller needle was inserted into that needle and bits of the tumor were removed and sucked up the smaller needle. Luckily they had him pretty doped up and he didn't remember much of the procedure, other than the popping noises when parts of the biopsy were taken.

They didn't let me watch the procedure, but I was able to be with Anthony right when he got out.

That's iodine, not blood.

The phone rang as we were walking out and it was Dr. Neumayer, Dr. Bull's wife who works at the Huntsman Cancer Institute. She was calling to check on Anthony and talk with him about how he was feeling, how the procedure went and what not. Up in recovery Dr. Neumayer stopped by to see how Anthony was feeling. She also said that one of Anthony's scans during the procedure looked like the needle was going straight into his heart, as the tumor was positioned behind his heart where it was not seen. After Anthony's meds had worn off we left the hospital and awaited news. He was pretty loopy and didn't remember much of the hour in the recovery area.

We were at the hospital for nearly nine hours.

Anthony's parents were such troopers, they stayed in the hospital with us ALL day.

On 12/6 Dr. Bull called Anthony telling him the biopsy results were in. Anthony has been diagnosed with Hodgkin's Lymphoma. Of all the cancers to have, this is definitely the best one as it has one of the highest survival rates. Anthony will need to start chemotherapy and radiation soon, and we have decided to stay in Oklahoma as there is a cancer center in Oklahoma City, about 30 minutes away.

Anthony has good days and bad days. His cough picks up a lot in the evening and he has a hard time sleeping quite frequently and most often sleeps on one of the chairs in the living room as he can not lay flat much of the time.

I wish I knew what to do for him.

Another tender mercy, open enrollment to make changes to my insurance was 12/8. I was able to add Anthony, so now he has his not-so-great insurance through OU, and whatever coverage he gets through my insurance.

We're still waiting to hear back from some oncologists in OKC, and after finals this coming week Anthony is hoping to start Chemo...

Random photos

and the Earth shook

It has been a very busy and eventful couple of weeks.

First off, Anthony has been really sick. I already posted a video of him wheezing and telling you about him being diagnosed with Bronchitis and a Sinus Infection. Well, the doctor at the student health center gave Anthony some antibiotics and a steroid and told him that if he got worse to go to the ER. Anthony sang at the Saturday evening session of Stake Conference and was feeling horribly and couldn't catch his breath so we spent our extra time change sleep-in hour in the ER. After a chest x-ray he got a new diagnosis - Bacterial Pneumonia. Yeah. So now he's on a different course of antibiotics and is supposed to go to the doctor if he isn't feeling better in three days. We're halfway through the second day, and I foresee us going back to the doctor.

After Stake Conf. on Sunday I was standing in the kitchen and Anthony was at his computer in the living room when something moved all weird like. I had no idea what was going on and Anthony & I just stared at one another for a second... then I realized the water in the fish bowl was sloshing around and our walls were swaying and creaking. I felt my first big earthquake. It was a 5.6 about 65 miles to the NW of us...pause, we're having another small one right this second. Also, there is a tornado warning for our area. Wanna come visit?

Work is going well. One of these days I'll actually explain what I do.

Hemingway and Winston are doing well. They went to the vet last week and Hemingway weighs 2.4 pounds and Winston weighs 1.8 pounds. That's almost a pound each in the last three weeks. Hemingway has started making these cute noises, and Winston purred for the third time today!

That's what going in this neck of the woods, how about you?