Recovering from the recent pneumonia slowly, very slowly...

"A week ago, when Margaret was readmitted to the City of Hope Bone Marrow Transplant Clinic, she picked a different room, one with a scene painted on the wall by a former staffer who signed the mural simply as 'Rizzo.' The image of a small coastal town in a tropical setting reminded both of us of a place in Puerto Rico called Playa de Naguabo. I had hoped that it would provide a peaceful distraction for Margaret. Today during my visit to the hospital, I was informed that Margaret will be taken off the Intensive Care status but will remain in the same room. When I arrived, she was sitting up in a chair, reading a magazine, which was great to see. A mild fever; her temperature is 100.2 degrees, considered almost "normal" for bone marrow transplant patients, but still enough to keep an eye on. All her blood counts are good, this morning's chest x-ray still showed some congestion, but steadily decreasing from yesterday. She is still really tired. The nurses had to help her into the chair because she can't walk on her own yet. Antibiotics & nourishment from the IV. Nausea is still a big problem; she hasn't been able to eat solids since coming off the ventlator. She is much more alert that she was the past couple of days, but it still kinda fuzzy to some small degree. Her voice is hoarse, so even though she can talk, she doesn't talk much. She is weak, there's no other way to put it. The physical therapist and speech therapist are working with her to get her back on her feet & talking normally within the next few days. Margaret said she is not up to visitors for now, maybe a few days down the road. She did not want her room phone number given out yet, because she wants to rest and not answer the phone. She does plan to see Dylan tomorrow, since she hasn't seen him in over a week. Erin will drop by on Saturday after I pick her up at Sky Harbor. Her mom Carmen may be able to visit on Sunday. The staff wants to keep the visitors to a real minimum (maybe one a day) and limit their stays to 10-15 minutes. I didn't even stay long today. So, maybe by Sunday or Monday she might be up to chatting on the phone and have other visitors AFTER the weekend. I can't explain how frail she seems right now, even though the worst is over. That pneumonia just kicked her butt hard, and she needs time to recuperate." -Ken

Into the Sheltering Shade

The desert garden at

Banner Good Samaritan Medical Center

Phoenix, Arizona

"Those of us who live in the desert of the Southwestern USA have an appreciation for the shade. It is a sheltering place of rest, protected from the blazing sun. Margaret has safely made it through a perilous stretch and is now resting in the figurative shade. She has improved steadily since this morning. As Dylan mentioned, she is off the ventilator and she is breathing fine on her own, with just a little supplemental oxygen. Her lungs still have some congestion, but they are clearing as she continues to receive antibiotics through an IV. Her temp, heart rate, and other vital signs are within normal range. She is often awake for stretches and talks occasionally with a hoarse whisper. She still has some lingering effects of the sedatives (not always fully alert, moves slowly, and has trouble focusing her vision), but the nurses say that will all clear by tomorrow. Nausea is still a big problem, so getting her to eat food again over the next few days is part of the program, as is the plan to get her on her feet and walking around her room a bit. She won't really be ready for visitors or phone calls tomorrow but probably will be able to do so by Thursday, if her strength improves. She said more than a few prayers of thanks today. Bless everyone for spiritual support during the past few days. It was a very rough passage. It is wonderful to see her sitting up, looking around, breathing normally, and smiling at the staff as they happily greet her." -Ken

Getting Better

My dad was at the hospital with my mom and called me with some good news. The breathing tube they had in her was removed. Now she just has the little oxygen tube like most patients. She is also off the heavy sedation and is just resting in the hospital. The staff at City of Hope seems to be doing an amazing job. I'm sure it wasn't a pleasant experience for anyone, but they literally saved my mom's life (again).
Apparently her vocal chords were agitated during that whole process so she can't comfortably talk right now. So hold back on visits and phone calls for at least a couple days please. I also just want to say thank you to everyone who is reading this for their support. My mom has a lot of friends and family that love her. She wouldn't be the same without you guys.
We'll post another update tomorrow.

-Dylan

Continuing Slow Improvement

"Margaret's overall condition remained basically unchanged on Monday. She is heavily sedated now, and only wakes up momentarily about 3 times every 24 hours, when the nurses back off on the sedatives briefly to check reflexes and her reactions. She is mentally fuzzy, disoriented, obviously frustrated when awake, and tries to grab or pull the ventilator tubes. However, there is some good news. I slept in a chair next to her bed again last night and in the morning the radiology staff took another chest x-ray. About an hour later the ICU doctors came in. They said the x-ray image still shows congestion in the lungs, but much less than yesterday. Her lab tests and other vitals look better, her temperature is in the normal range, heart rate & BP is normal now. So, continuing with plenty of antibiotics through IVs, rest, sedation, and on Tuesday they plan to begin transitioning the ventilation to more normal breathing on-demand by the patient. If all goes well, the ventilator tubes might be removed by Tuesday evening or Wednesday. Then the sedation can be lifted and she can return to her normal alert self. I'll update more after Tuesday morning's discussion with the ICU docs." -Ken

Some Improvement But Still Guarded

"I spent Saturday night at Margaret's bedside in the hospital, keeping vigil and trying to reassure her. She was mostly sleeping under heavy sedation but every hour or two, her eyes would open and she would be aware for a few minutes before dropping off again. By sunrise, she awakened for more extended periods. She communicated with gestures since she cannot speak right now. The Good Samaritan ICU staff and City of Hope BMT clinic staff have really worked to balance every test, image, and vital sign with medication and procedures to keep things under control. This morning Maragaret's condition is much improved: normal temperatures, normal heartbeat and blood pressure, x-rays show less congestion in her lungs, and she looks less distressed. However, she still has pneumonia, she still is on the ventilator, and she still requires lots of antibiotics. There was some buildup of fluid between her chest wall and lungs, so a thoracentesis was done this afternoon. While I went home for a couple hours sleep, Margaret's friend Kate went in to sit with her. Since she is a former respiratory therapist, she is familiar with the ventilator and ICU setting. Otherwise visitors are out of the question right now. Your prayers and loving thoughts are working; please keep them up. I'll be back at the hospital in an hour or so, and will update everyone tomorrow." -Ken

Prayers for Margaret

Please pray this novina for Margaret and her family. St Peregrine is known as the patron saint of cancer patients.

Prayer to Saint PeregrineO great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.
For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you. (Pause here and silently recall the names of the sick for whom you are praying) Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.

Guarded Condition in Intensive Care

"Last night Margaret's condition took a very sudden turn. At 4:00 am, the hospital called and told me the ICU physician needed to do a bronchoscopy and chest x-ray because Margaret had developed pneumonia. Her fever was now over 105 degrees. I spoke with Margaret on the phone and she wanted assurance that I understood what they were proposing and had no objections. I told her not to worry and that I would be there right away. When I arrived at the hospital, Margaret was breathing on a ventilator. I stayed with her for several hours, holding her hand. She was uncomfortable and anxious, of course. With the breathing tube, she cannot talk, so she communicates with gestures. The daytime ICU team did another bronchoscopy, ran several tests, drained her congested lung and sedated her. So she is sleeping and resting as I write this. This is a sudden turn of events, but the staff is fairly confident they can get this under control. Your love, prayers, and positive thoughts will help Margaret right now." -Ken

Banner Good Samaritan Medical Center

Margaret has a high fever that is being treated with IV antibiotics. The Bone Marrow Transplant staff say that this often happens to BMT patients wthin the first 100 days after the transplant. They expect her to stay about 36-48 hours, but definitely until they get her fever under control, so maybe she'll be able to come home before the weekend is over. Margaret is mostly sleeping and resting today. When asked if she wanted us to bring anything to her hospital room, she said, "No, I don't plan on staying here that long so I don't want to move in my stuff."

Back to the Hospital

Margaret is back at Banner Good Samaritan Hospital... At home yesterday, Margaret had a temperature that continued to climb over the course of the day. BMT patients tend to have a temp a bit higher than normal, so the City of Hope BMT clinic had told us that we should call if her temp went over 100.4 degrees. We did and since she had a Friday morning appointment, they said to keep watching her temp and they'd see her then. But we had to call again if her fever continued to worsen. Well, it did shoot up to 101.8 degrees, so we called again and they told us to bring her in ASAP. She was admitted to the 12th floor again and had IVs started with antibiotics. Hopefully, she won't have to remain there very long.

Friendship

Have you ever tried to protect your friend from being knocked around or bruised during a relationship, or tried to help her feel better after falling down? The two girls in this picture are geared up for their roller-skating adventure. They have all the right spots padded. They can take on the world. I chose this picture for the blog today, because as I looked at it I recalled the adventure of my friendship with Margaret. We have held each other up through various experiences which spans over 35 wonderful years. Seeing Margaret today, doing so great at home was a special treat for me. I was able to express how very special Margaret is to me and how much I value our friendship. Having a great friend means you just get each other, you understand the nuances of conversations and the history of your lives. Friendship is a gift, and I am happy to say that I am blessed to have Margaret as my friend and I thank God each day for letting my sister live another day.

Sweet Home Arizona! Home, Sweet Home!

At around five o'clock this afternoon, Margaret walked into her own home. Hospitalized since late March with only a short 9-day break, it seemed surreal to her to finally be back in her own comforting surroundings. Cosmo, her loyal dog (and freshly groomed by neighbor Becky), met Margaret at the door. Taking several daily medications and scheduled for daily return visits to the City of Hope BMT clinic, she still has many months of treatment and careful monitoring to go. But she is sleeping in her own bed now, surrounded by all the familiar things within her own home.

Margaret Released from the Hospital!

This photo shows Margaret just moments prior to her release today from in-patient status at the City of Hope Bone Marrow Transplant Clinic at Banner Good Samaritan Medical Center. Nurses Erin and Amy trained Margaret on some of the daily self-care she will need to do as an out-patient of the BMT clinic.

IV Lines & Tubes Will Be Off Soon

Sometimes Margaret's hospital room seems like a tangle of hanging bags and tubes. At the Getty Museum in Los Angeles earlier this year, she viewed an an art installation that presaged the IV bags, lines, and even the Hickman catheter that would serve as her lifelines on this particular voyage in her life. Sometimes we are given glimpses of future events, but we don't recognize them at the time.

Good news: it looks like Margaret will be released to return home on Monday. Enough of these tubes already!

Preparing for Margaret's Return Home

Bone marrow transplant patients have immune systems that are very fragile. Before Margaret can return home, everything must be cleaned to the highest standards. In the process, she is granted every woman's dream: a household spring cleaning done by OTHER people.

Air ducts are now squeaky clean

Before Margaret can return home, the entire ventilation and air conditioning system has to be cleaned. This was done yeterday by a crew from the Top Hatters. No mold or Legionnaire's disease allowed in Margaret's house!

Empty rooms to maximize the cleaning

The folks at The Top Hatter did a great job cleaning the carpets. The owner's daughter was also a bone marrow transplant patient at The City of Hope clinic.

Of course, the furniture had to be stashed SOMEWHERE!

While the carpet cleaning took place throughout the rest of the house, the furnishings were stored in the tiled kitchen.

Looking to Go Home In a Few Days

With her blood counts climbing back up closer to normal levels, and her respiratory challenges overcome, Margaret has her sights set on leaving the 12th floor of Banner Good Samaritan Hospital just as soon as the doctors will allow. They're talking about less than a week... maybe sooner!

Still some hurdles to get over: Margaret has to eat solid food consistently without nausea, there is a minor infection in her foot (of all places) that has to clear up, and the several medicines administered by IV must all be switched over to oral doses. So far one medication has been switched successfully. Steady progress, but not quite there yet.

Flashback: The Starting Line

All this talk about the many years of Ken & Margaret's relationship brought to mind this photo. It was taken at Pensacola, Florida in February 1982, after just two years of marriage. Ken was an naval aviation officer candidate and Margaret was a first-time expectant mother.

Marathon Couple

Here is a great picture of Ken and Margaret. Their journey together is an inspiration to love. Looks like things are getting better, Ken can let everyone in on Margarets progress.

Sleep

Margaret, has been sleeping more than usual these past few days. She had a lung procedure to remove fluid from them, so she is now breathing easier than the past few days. Margaret is recieving pain medication which is now needed because of the lung procedure puncture site being painful. It's good that Margaret gets rest, she's going to need energy to do all that she wants to do when she gets out of the hospital. Keep those cards, letters and prayers coming.

Counts are going up!

Good News Today. Margaret called me bright and early stating her counts are rising. Yahoo! Keep those cards and letters with positive thoughts coming Margarets way, they are working and you are making a difference. Thank you!

The Latest Respiratory Challenge

Today Margaret had another chest x-ray & CT-Scan done to check her lungs. Yesterday she had congestion and some difficulty breathing. Checks of her blood oxygen levels showed that she needed more O2. So she is receiving supplemental oxygen during the daytime. Last night, she had to wear an oxygen mask but found it difficult to sleep with it on. The repiratory team is checking her lungs out carefully today, to determine further treatments.

Some good news: Margaret's white blood cell count is rising, a possible indicator that the bone marrow transplant has been successful. Counts of red blood cells & platlets are still rather low, however.

Bizarro Sun Glasses

The recent black eye called for drastic measures. Until it heals, Margaret has an awesome set of sunglasses ready to wear for those moments when a haute fashion presence is called for...

("If you can't make a visually stunning appearance, you aren't really an art teacher!")

Other Loved Ones Who Visited Last Week

This last week, Margaret had visits from all three of her grown children as well as her mother. Here is a photo taken on Memorial Day of daughter Jessica, daughter Erin, son Dylan, and her mother Carmen. The girls traveled from Georgia and California to visit Margaret in the hospital. The presence of her mother and her own children has lifted Margaret's spirits greatly.

Thinking of Making a Phone Call?

Words from Ken about Margaret, "she is feeling a little better, although still gets tired easily, so if you want to call her on her cell phone it is # (623) 512-0647. Her hospital room phone is (602) 239-3886. Please don't telephone after 6 or 7 PM (MST), because she needs her rest. She has her best energy spurt & alertness between 10:30 AM and 1:00 PM daily."

Margaret's Brother is Her Hero

Today Margaret's brother, Raymond, visited her at the City of Hope Bone Marrow Transplant Clinic at Banner Good Samaritan Hospital. Margaret presented him with a hero's medal because he saved her life by being a bone marrow donor.

Raymond's wife Sally was also there, along with Margaret & Raymond's mother.

In the photo, Margaret's left eye shows the after effects of the procedure done yesterday, where a small optical tube was inserted into her nostril and down into her lungs. A little bleeding took place under the skin in her nose, near her eye, and so it looks like she received a black eye.

Yesterday, Today and Tomorrow

This is NOT Margaret's chest x-ray, but it illustrates that something is happening in her lungs. Margaret had a bronchoscopy yesterday, and today is day 10 post BMT (bone marrow transplant). Remember Margaret and her family in your thoughts and prayers.

Send Cards, Letters and Poems to Margaret

I'm sure Margaret and her family are on your mind. Well insted of sitting there, doing nothing, do something! Send Margaret a card, letter, note, picture etc, maybe even a postcard of where you live now. Make your card or note out to:

Margaret Thomas, Room 1204

City of Hope

Banner Good Samaritan Medical Center

1111 E. McDowell RoadPhoenix,

AZ 85006

(602) 239-2000

Day 8 after Bone Marrow Transplant

Kate and I spent some time with Margaret tonight. For those of you who are checking the blog regularly day 8 represents a point in the post bone marrow transplant that is another victory for Margaret. As day 10 approaches please send Margaret all your positive thoughts, say only good things to each other and to Margaret and of course keep her and her family in your prayers.