4/18 - After Three Weeks of Treatment

April 18 marks the end of the third week of treatments for Maria.  It also marks seven weeks since her surgery.  It is hard to believe that it has been seven weeks since her procedure.  The time has certainly passed quickly.

Many of you have asked about the radiation treatments.  Monday - Friday I bring Maria to the Helen and Harry Gray Cancer Center in Hartford for her treatments.  They last about 15 minutes.  Maria reclines on a table, the table is positioned with lasers, her mask is affixed to the table, and then her treatments begin.  Maria is pictured here with one of her radiation techs, Sara, as she prepares Maria for the treatment.

Sara making final adjustment before beginning the treatment

Maria, all set and ready to go - and no it does not hurt.

Next week on Monday April 21, Maria will have reached the half-way point of her treatments.   Thank you all for your support, your thoughts and prayers and positive energy.  

4/11 - After Two Weeks of Treatment

April 11 marks the end of the second week of Maria's treatment.  She is tolerating the radiation and the chemotherapy very well.  She does get tired a bit because of both and the really good news is that she has been sleeping really well since the start of treatment.   Her radiation sessions are only 15 minutes a day.  Each week on Wednesday we meet with Dr. Coen, her Radiation Oncologist, to assess any changes and to discuss how she is feeling in general.  So far two meetings with Dr Coen, two weeks down, four to go. 

This week Maria received many, many, plants from her friends.  Picture of them are attached.  Her room has a beautiful Southern exposure so the plants will do well there.  The plants add a 'feels like home' touch to the room. 

Thanks go out to Terry and Muriel, the East Central Board of Realtors, William Raveis Glastonbury office, Anita, Deb & Ken, and Al & Marie for the nice plants.  Anita, thanks also for the nice bird feeder outside the window. 

4/4 - Maria Begins Treatment

This week on Monday, 3/31 Maria began her chemotherapy treatments and on Tuesday 4/1 Maria had her first radiation treatment. 

Maria takes her chemo medicine Temozolomide, (TMZ), in pill form every night, and Monday through Friday she visits the Helen and Harry Gray Cancer Center in Hartford for her radiation treatments.  I take Maria to the Cancer Center every morning for the radiation treatments.

As I write this on Friday, 4/4, Maria has completed her first week of treatments.  So far she is tolerating the chemo medicine well.  After one week, Maria is pooped out, but so far she is mustering her strength very well.  Maria's treatments will end May 12.  Thankfully one week is now behind us.  

To our friends and relatives - important facts about the next several weeks:

Over the next few weeks the cumulative effects of the radiation treatments and chemo medicine will cause Maria to become tired easily.  She will also likely continue to have difficulty speaking, she may be unhappy or moody.  We ask that you understand that Maria may not always be her perky bubbly self during this time period.  She will tire easily and sometimes may not be able to to receive visitors.   

A simple request - if you have a question about whether or not you should visit Maria on any given day, feel free to reach out to Pat.  You can call or text me on 703-342-7052.  

Thanks to all for your continued support, positive energy and prayers.  

4/3 - Maria Transfers from Gaylord to Marlborough

IMPORTANT

On Thursday 4/3 Maria moved from the Acute Rehab facility at Gaylord Hospital to the Skilled Nursing Facility and Rehab Center at Marlborough Health and Rehab Center

Because Gaylord is an Acute Rehab Hospital insurance does not provide for an infinite stay.  With much regret and sadly we left Gaylord Hospital on Thursday 4/3.

Our sincere thanks and appreciation go out to the staff at Gaylord.  I will attempt to list them here but expect I will miss a few names; 

• Anne, Allie, Tim and Erika - Maria's therapists.  
  
• Kaitlyn, Karen, and Liz Maria's nurses.  
• Tim, Adam, Michelle, Cyndi, Ann, Stacey and Mary her CNAs.  
• Erica, the secretary at the Lyman 2 nursing station.
• Jean, her Managing Nurse Coordinator, and Dr. Dinu, her rehabilitation doctor. 
  

Anne. Tim, Allie, Erika - Maria's Therapists

Thank you so very much for caring for Maria and for helping Maria begin her long journey back to health.  We will miss you terribly and promise to visit when she is better. 

Kaitlyn, Karen, Liz - Maria's Nurses

3/31 - Weekend Update

This weekend was a busy time for Maria.  She filled the library at Gaylord with visitors on Saturday.  Evelyn and David Battle stopped by.  Nancy and Carole visited as did Tracey and Jen - all colleagues from the real estate biz..   Matt Hill stopped over too and brought Maria some nice treats.  Thanks Matt!  We were also surprised by a visit from my sister Trish and her husband David.  With them, were my dad, Erminio, and my aunt Tillie.  What a really nice treat to see them and for Maria to have them there. Thank you Trish and Dave for making the trip, and thank you dad and Tillie for coming.

Vin and Dawn Marceno from Colchester also stopped over for a visit.  Later that day my room mate from college Michael Astafan and his wife Jane stopped by too.  Michael and Jane traveled from Carthage, NY to see Maria.  A really special treat as we don't often get to seem them.  Michael and Jane also brought a nice gift for Maria too.  Thank you guys, so nice to see you.

On Sunday Paulie returned to college.  It was an especially sad day for Maria as she really misses her Paulie.  He'll be back soon though, because he graduates from RIT this May.  Maria and I will be front row at Paulie's graduation ceremony.  On Sunday, Maria also visited with Lorraine Legnani, and Karen Bauer, both ex-coworkers from HSBC and good friends.

This past weekend was a tough one for Maria, as we saw a marked decline in her speech.  It was hard to see her struggling like this given the progress she had made up to that point.  This is likely a temporary set-back, but one we are tracking closely. 

Maria continues to power through each day.  The toughest part of her journey begins this coming week, as Maria will begin Chemotherapy and Radiation.  

Thanks again to all our friends and relatives for your support, positive energy and prayers. Maria has a fabulous support network.  Thanks !!

3/28 - Update

Today marks 3.5 weeks at Gaylord Rehab, and 4 weeks since her surgery.  She has come a long way and made great progress, in a short while.

This week Maria had several visitors, Tracey and Bonnie stopped by as did John Kearny.  Betty and Hardy, our neighbors, visited too.  Joe Scutnik stopped by this week and brought Maria a nice gift filled with her favorite beverage.  Thanks Joe. We'll need to wait a bit before Maria can enjoy the vino.

Maria's Bulletin Board Filled with Your Cards

Maria at Gaylord - 3 weeks after arrival  - 4 wks after surgery

Before I talk about her fantastic progress this week I wanted to show you all the bulletin board in her room.  We ran out of board space and have had to pin your cards 3 and 4 deep under each push pin. They really brighten up Maria's day! 

Its been a little while since you've seen Maria,   She brought with her some really bright colors that she loves to wear during the day.  We took this picture of her wearing her favorite color, PINK !  I don't think the folks at Gaylord have seen bright colors like this in a really long time.   Doesn't she look really great!

On Monday we heard from the hospital regarding Maria's eligibility for the Rindopepimut vaccine trial.  Unfortunately the protein required for the vaccine to work was not present in the tumor.  Therefore Maria cannot participate in the vaccine trial.  Maria's radiation and chemo treatments will begin next week on April 1.  She will follow the recommended course of treatment for this type of tumor. 

Maria's Progress

Maria has made significant progress in speech therapy.  On Wednesday Paul and I noticed a huge improvement in her speech (not just from the beginning but from the prior day before).  Her speech and ability to express herself continues to improve daily.  While Maria still has Aphasia, she has made huge improvements in speech.

While you have seen Maria in a wheelchair most of the time, during the day she spends most of the time out of the chair practicing walking, turning, exercising and practicing chair transfers.  This week she graduated from using a hemi-walker to a 4-point cane.  Her physical therapists are extremely pleased with her progress.  She has also made great strides with occupational therapy, showering by herself (but with supervision), and dressing herself with minimal assistance.   

This is the Ekso suit

One of the newest techniques in physical therapy are advanced assistive devices.  Gaylord Healthcare is one of only 19 locations in the U.S. to have the Ekso bionic exoskeleton. Ekso is a portable adjustable bionic exoskeleton designed to help patients with lower-extremity paralysis or weakness to stand up or walk.  The main goal of Ekso therapy is to improve your overall physical and emotional health.   This week Maria was introduced to Ekso on Monday and had a repeat session on Friday.  Paul and I visited on Friday to watch Maria in action in the Ekso.  It was so cool to see Maria walking normally.    

Maria rockin' the Ekso bionic suit... 

Maria's Ekso therapists.  One of Maria's lead therapists, Erika, is picture here, wearing the purple top.

3/23 - Update

This past week was a busy week for Maria.  In addition to continuing her rigorous PT/OT/ST at Gaylord Hospital, Maria also had her first post-op visit with her Neuro Surgeon on 3/19 and her first visit with her Radiation Oncologist on 3/21. 

The report from the Neruo Surgeon was positive.  Maria's incision is healing well.  Her recovery from the operation is proceeding as expected with no issues.  As a result of the operation she remains weak on her right side.  At times she also has difficulty finding the right words or sequencing motor actions.  This is called Aphasia.  This is a normal result from a brain operation with a tumor placement like hers.  

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This is what a Maria's Radiology Mask looks like

Maria's Radiology appointment was a planning appointment.  In April she will begin Radiation treatments where they will irradiate her tumor site.  During her appointment they created a mask (like the one here).  This mask is used to keep her head in the same position  each time she receives her radiation treatments.   The technology used to deliver Radiation is a 3-D model of the tumor site created by combining her CT and MRI scans.  It is a very precise method of delivering Radiation.

Her Radiation treatments will be daily, Monday - Friday for 6.5 weeks.  Along with Radiation, Maria will be taking a Chemotherapy drug called Temozolomide or TMZ for short.   Her Chemo is a pill form and will be administered every day during the treatment period. 

Maria's treatment is the recommended post operative treatment for a tumor like hers.  The main goal of the treatment is to ensure that all of the tumor cells have been eliminated and that the tumor does not grow back.  

On Thursday this week, 3/20, Pat spend the day at Gaylord and worked with Maria during her PT, OT and ST visits.  Pat had a first hand opportunity to work with Maria as she practiced climbing stairs, practiced walked with a hemi-walker, practiced getting on and of the commode and getting in and out of tubs.  Maria has progressed very well since her arrival on 3/4.  Maria could not perform any of these tasks on 3/4 when she arrived.  Now she can perform these tasks with 'moderate assistance'.   She is going great. 

On Friday 3/21, Maria had a few surprise visitors from Utica, NY (home for us).  Her cousins Nancy and Florene (Leone) visited.  Jerry, Florene's husband was with them too.  This was quiet the surprise for Maria.  They spent the afternoon together enjoying the treats that they brought from Utica - tomato pie, Italian pastry, and Aunt Grace's home made sausage roll.  It was great to see them.  The treats from Utica were especially tasty.  

On Saturday 3/22 Maria, had many visitors.  Two of her friends from C-21 stopped in.  After that our friend Lorraine Legnani (HSBC co-worker) visited too.

At lunchtime Ken and Debbie Derrick visited and brought in a nice lunch (grinders, yum..) and desserts - chocolates and chocolate chip cookies, (double yum), for Maria.    They spent the afternoon visiting with Maria.  Ken and Deb spent the day with Pat on surgery day, and had not seen maria since that day.  It was quite a different visit for all of them - what a great visit. They also brought a beautiful scarf for Maria. I can't wait to see her in it.  Thank you Ken and Deb !

Later that day Magda and Ed Organek stopped by.  Magda made Maria home-made Perogies.  They were delicious.  Danielle and Matt were also there with Ed and Magda to visit with Maria.  We spent quite a while visiting with them.  It was nice to see them. Thank you Ed and Magda. 

It was a great day for Maria, and a great day for visiting.  Maria was happy to see everyone and was overwhelmed with the nice treats that everyone had brought.  Pat is especially thankful for treats too (its all about the leftovers !!)

Maria sends her thanks to all for your continued support, prayers, and positive energy.  She continues to progress well.  Your support and friendship provides her with an abundance of energy. 

Weekend Update 3/15 - 3/16

In CT Saturday and Sunday were great weather days.  I think the nice weather made folks antsy for a car ride, as a result Maria was the recipient of many surprise visits.

Nancy Wiener and Karen Martin (C-21) stopped by for a visit.  Evelyn and David Battle (former HSBC co-workers) surprised Maria as well.  Evelyn and David brought Maria a beautiful hand-made shawl. Thank you so very much Evelyn !!

Later in the afternoon, Maria was visited by four of our friends from Colchester.   Dawn and Vin Marceno and Dave and Kathy Randall.  Maria entertained them in the 'Gaylord living room" for the afternoon.  All in all, it was a day packed with fun and visitors.  Maria was really glad to have the company and to see her friends.  

Maria ready for bed after her busy weekend.