Updates From The Hospital By Staci Atwood

Phase I Treatments

September 26: Bo has been hard at work on updating and managing his website! I get tons of texts and calls from him on what he wants to add and what he thinks you all will want to read. Of course, I am thouroughly enjoying my homework assignments!
September 27: Mr. B has his first visit to the lab today...it's bloodwork day! As soon as I hear the results, I will update!
September 28: Blood tests are back and Mr. B has met with his oncologist. His numbers are up which are good, but his white blood cells are still contaminated and replicating...he will have another biopsy on Wednesday and will be back in the hospital for Phase II either this weekend or the beginning of next week. He will remain in hospital while taking chemotherapy, but will be sent home for outpatient earlier than Phase I. We will keep you posted...please keep my pops in your prayers.
September 29: Pops had his biopsy today. His labs today reported his platelets are up, his white cells are down and his ANC (The absolute neutrophil count (ANC) is an estimate of the body's ability to fight infections, especially bacterial infections. These test results are often referred to as a patient's “counts.” An ANC measures the number of neutrophils in the blood. Neutrophils are a type of white blood cell that kills bacteria) shows no change. We should have prelimnary results back Friday with the plan to start Phase II chemo on Tuesday.
October 3: We got to see and visit with Mr. B before he heads into Phase II treatment. At this point, Mr. B has started to shed his silver locks and he realizes he is in a fight for his life. It was wonderful to spend time with Bo, Linda and their two dogs, Koko and Pepe, and, as always, it was not long enough. I didn't get to give my pops a hug, but those hours with him watching the old Batman serials and listening to him sing were absolutely priceless.

Message from Staci:

Statistics are not on Mr. B's side thanks to the aggresiveness of the Philadelphia Chromosome, but that doesn't mean he is going to roll over and not fight. I admit, I had a pensive moment where I wasn't as positive as I should have been, forgetting that this site is a way for both Mr. B and family to get the word out to his supporters...I am on the sidelines of this battle, and I let my pom poms drop. My job as niece/daughter is to publish his truth and to cheer for the W. Mr. B wants this site to give updates on his treatment and to share any information on how to help others dealing with Leukemia.
If you go to the Resources tab, you will find links to articles, agencies and locally available grants. We continue to update this page as we locate and research the validity of the information.

Recovery Response: Phase 1

Your body needs time to recover from the assault of what is figuratively the equivalent of Round-Up for the body. Just like Round-Up, chemotherapy doesn't just kill the bad cells, it kills all cells. It pretty much wipes out your immune your system, saps your strength, and drains your energy. When combined with bed confinement for 20+ days, you have to retrain your body to sit up, stand and walk. Most of your last ten days in the hospital are spent with behavioral and physical trainers.

Recovery is a critical component of chemotherapy. Optimally, my team would like to start the next round four weeks following the completion of the previous round. To have your body prepared to go again, you need to be physically, emotionally and mentally ready. Exercise is critical. Meditation/prayer can help you emotionally. Mentally, the more you can learn about your cancer, the better you will be prepared to battle it.

Recovery Response: Phase 2: The Do-Over

I said earlier that no two responses to treatment were the same. It seems to be the case, even when it's your own. Without the added burden of battling pneumonia, the side effects from chemotherapy were minimal. The two weeks dedicated to physical therapy were gone.

The challenge, now, was to stay focused. The days between the end of chemo and the bone marrow biopsy (10 days) and the lab results (four - five) seem so long and pass so slowly. You're, obviously, anxious about the labs. You're tired from the lack of sleep. The lack of variety in your diet makes it challenging to have the appetite necessary to fuel your body, and exercise becomes repetitious.

It's a time where you really must dig in and push yourself. Your preparation at this stage will be critical to your success in your next stage of treatment.

Oh, and like Ted Lasso, never, not for a minute, stop BELIEVING in yourself.

Hmmm. Bravado Versus Reality

Well, it didn't take long for my tough talk to meet up with a dose of reality. The results of the second bone marrow biopsy came back, and the numbers were not as good as expected. We were hoping to go home for that 10 day interval between the next phase of treatment. Instead, we're doing a third biopsy to establish a growth rate line of what and how much is being produced by my bone marrow.

If you are anything like me, instead of waiting patiently another week for the results, this is where your mind goes crazy with theories. So, for two days, I over thought every scenario. I ended up the host of my own pity party, and questioned the reason to continue what appears to be an unwinnable fight.

The next morning, with Linda;s help, I recognized what we all eventually come to grips with: I have little control over situation. The most I can do is follow the directions of my medical team keep myself physically, mentally and emotionally healthy. So, I showered, put on my big boy pants, walked a mile, did my arm exercises, watched a movie with Linda, ate a dinner I didn't want, and walked my second mile of the day before settling in for a MNF game in which i had no interest.

I was right about the boredom. I just underestimated my own susceptibility to it and the emotional swings that come with waiting for each day's blood count numbers. Staying strong is a lot harder than it sounds, but you can do it if you continue to BELIEVE in yourself or have a caretaker who will only let you wallow in self-pity for so long. Thank you, Linda for all that you do.

Phase 2 Treatment Begins: Check-In Day

Mr. B with Nurse Rosie...she started him off with some words of wisdom...stay as active as you can, that hospital bed is not your friend.

October 5: Mr. B has been admitted to Medical City. What was supposed to be Phase II and have him admitted for 3-4 days, has now turned into Phase I do over. They are going to take more care to protect his heart and kidneys this time around, but Mr. B will be in hospital for a month. His good cell count was up, but so was his bad cell count.

Phase 2 Treatment

October 6: Mr. B is getting Round 1 of a 5 day Chemotherapy regimen. Full of smiles and ready for the fight!
October 7: Mr. B has completed day 2! Straight from Mr. B:

Day two has been as good as day one so far. I've completed treatment and I'm halfway through the fourth. The only side effects have been chills and a slight headache. I've walked 10 laps twice and have done my arm and leg exercises...I could not have done that the first go round !

Mr. B is starting to receive the messages you are leaving him, and is really appreciating the love and support: #IBelieveinMrB

October 8: Bo is getting the PICC line installed for his 2nd 30 day stay in Medical City Hospital of Dallas. The line goes through the arm to the heart. It is used to administer drugs, including chemo, intravenously.
October 10: Mr. B's last day of chemo! He was able to complete the full round of chemo this time with no pneumonia!
October 11: Mr. B is starting to have reactions to his chemo treatment. He has fluid retention, swelling and severe chills. His skin is so hot you can barely touch it and skin sores. He is showing no signs of fever, and when asked how he is feeling he always responds with a "doing great"!

October 12: Now we wait...we wait and hope the numbers continue to drop. In approximately 10 days, Mr. B will get another biopsy. About 72 hours later we will know if he will go into outpatient mode with a brief stay for Phase II, or continue to stay in the hospital. On the right, Nurse Laura marks the All Done message to his chart!
October 13: Mr. B is coming up with new concepts for his site...after many humorous texts...ok, Mr. B was frustrated, I was the one laughing...he will be back to typing soon...Linda sent a picture of a quote she has hanging in his room, "Nobody is gonna hit as hard as life, but it ain't how hard you can hit. It's how hard you can get hit and keep moving forward." ~Rocky Balboa

A Day in the Life of Mr. B Nosebleeds and Pills

October 14: A new side effect has appeared. I teased that it looks like the sun poisoning I get thanks to Lupus. I went online to Medical News Today and looked up what this rash means in a Leukemia patient. I found out when AML causes low platelets, it may result in the appearance of small purple or red spots on the skin. These are called petechiae. Petechiae develop because tiny blood vessels under the skin break. The low platelet count in people with AML can mean that their bodies do not clot these breakages properly, and the red spots become noticeable.
October 19: Biopsy Day...Mr. B had his biopsy today and we should know numbers in 72 hours. These numbers will determine the next step in his journey.
October 22: The biopsy results are in, and straight from the desk of Mr. B:

There were three possible results we could have heard today:

1. All the infected cells were gone, and the bone marrow was manufacturing good cells.

2. Most of the bad cells were gone, but we would need to go back in and target the bad cells again.

3. The bad cells outnumbered the good cells and we're producing at a significantly higher rate than could be controlled.

Ok, we got number two, not the news we had hoped for, but the news we kind of expected.

- There are still too many bad cells to go to the next level.

- They are going to target these cells over the weekend , then do another biopsy on Tuesday.

- Which means we will, once again, be waiting on lab results until next Friday. And now we know how hospital occupants got the name, “patients.”

October 25: Mr. B sent a picture...he is upbeat and still fighting! The chemo, while designed to fight the bad cells, has also claimed victory over Mr. B's silver locks...we are now planning his Halloween costume...I am thinking we paint him blue and he is the genie from Aladdin...time will tell!
November 16: I have been remiss about updating...unfortunately both worlds collided and I had to focus on the other for awhile! Mr. B came home in time to watch the World Series on November 2! After the other 2 treatments didn't work, morale was low, but then he tried a third treatment and all of a sudden, numbers started to improve and there was talk of him coming home! On November 11, his numbers were stable and he was told there would be zero blast cells for the third week in a row. He was told to continue with this medication with a follow up bone marrow biopsy in a couple of weeks. He is dealing with insomnia which coupled with a lack of energy are one of the side effects of the drug. He is even more committed to the fight!

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