Hope in a bag ....

Last Wednesday was a tough day. We (Katie, Mom, Jim and I) set out for Tampa bright and early in the morning. We set out to get the answers and chemo we had been waiting for. Well, after a long day we came home with only half of what we were looking for. Mom got the okay to start the chemo. However her counts were still low so they wanted her to wait til today (Monday) to start. She had an MRI but the result weren't exactly what we were looking for, but thankfully didn't completely disappoint us. The MRI still shows changes, but the doctor is still unsure on whether the changes are cancer related or due to swelling from radiation and healing. We will have to wait until her MRI in January to be able to compare that scan to the previous ones to know exactly what we are looking at. We are kinda happy that our holidays will not be disturbed by another stressful appointment.

So .... Today I picked up a very expensive (thank god for insurance) bag of chemo therapy in Tampa and delivered it to her around dinner time. I drove across the bridge with the bag in my passenger seat knowing that the only hope we had to hold on to was in that bag. I can't describe to you how I felt bringing it to her. So many emotions. At the end of the day, we are happy that no matter the dosage, the delay or what the scan looks like, Mom was finally able to start chemo again. This makes all of us happy and gives the hope we have been looking for.

Another blessing ... Mom and Jim are staying with Grandma for a week or two, while work is being done on the villa. This will also be helpful to make sure Mom has someone with her during the day while Jim is work. GG is in over drive making sure Mom has everything she needs, that Jim has dinner on the table and that Bailey gets all the walks she needs. She is such a "Giving Tree".

Standing still .... Again.

For the past three weeks we have been going back and forth to doc appts to find out if Mom's platelet counts were high enough to receive Chemo. Well today's appointment was the same as the last three weeks. Mom once again did not get the approval to start taking the next round of Chemo. Her counts were only 95k and needed to be at the least 100k. We will not lie to you .... this has been highly disappointing for us. The spirits across the entire family have been up and down. We are thankful though that all signs point to her getting chemo next week. We also look forward to meeting with the doctor at her next appointment to see if there is an alternative protocol Mom can pursue since her body doesn't seem to want to recover from the current type of chemo. We will also discuss what the delay in treatments means to her treatment plan as a whole. Please keep praying and sending positive thoughts our way. We need them. I will re-post after our appointment next week.

On a brighter note .... Mom has been feeling well and had been getting out of the house. We have been enjoying Sunday dinners at Katie and Patrick's house, Chase and Owen's football games, Miles for Hope Benefit Walk, shopping, dinners out, birthday parties and last but surely not least Epcot! Mom, Jim, Katie and Patrick went to Epcot last weekend for the Food and Wine Festival. Mom had a blast. She was so happy to be there and enjoy the park like the ole days. The only difference this time was that it was from a wheelchair. She allowed the family to push her in a wheelchair to help her preserve her energy for the entire day. The four of them came home from the trip and crashed. They were all tired! I have put pictures below of some of the things we have been doing over the past month. Enjoy! Note: Mom's cheeks are puffy from the steriods. She has to take the steriods to help her recover from surgery and radiation. She hates her cheeks, but we insist she is the cutest little puffer fish we have ever seen. ;)

Not happy but not sad ....

We went to doctor today to have Mom's platelet counts checked again. Her platelets are still too low to get chemo. Our platelet counts are around 450K. Her platelet counts need to be at least 100K and they are only 63K right now, up from 50K last week. We will have to wait until next week to see if her counts are ready for the next round of chemo. This is all completely normal for patients that are post radiation and chemotherapy.

Mom has also been battling headaches and other issues this week. The doctor upped her dose of steroids and reminded us that the six weeks after radiation therapy can be the hardest. This really comforted us. We were worried that we were seeing signs of the tumor. :( Thankfully they put our minds at rest that, what she is experiencing is from her healing from radiation and chemotherapy.

After all of this ... she is doing well ..... so we are still doing well. Everyday we wake up and remember to look on the brightside, to hold on to hope, and try to make the most out of the day. Some days are harder than others as you can imagine. Thankfully today will make the next couple of days easier while we wait for chemo.

Today's Appointment

Jim, Mom, Katie and I set out early this morning to head to Tampa for Mom's big appointment. We had high hopes of TONS of information and for it to all be good as today would be the first day that she would get an MRI since treatment. It was our first look to see how she reacted to the 6 weeks of radiation and chemo. Today's appointment didn't necessarily go as expected. We thought we would walk away from the appointment with a clear cut feeling of victory. However we found out that we will not be able to do that until the next MRI about two months from now. The brain goes through many changes after radiation, which can make it hard for the doctor to determine exactly how much progress she has made. So, we will now have to wait until her next MRI to determine exactly how well she is doing. The next MRI should be about 2 months from now. They will compare the MRI from today to the MRI from then. Hopefully at that time will we be able to do our victory dance. ;)
As far as the next steps of treatment. Mom will begin a 28 day cycle of Chemo and will repeat it for 6 months. She will take a higher dose of the Chemo than she has been use to.... she will do this for the first 5 days of the cycle and then will have 23 days off. We are playing the waiting game right now as to when she will start her first 28 day cycle. Her platelets are low and she cannot start the cycle until they come back up. She will have blood work done again next week to see how her counts look. The doctor was optimistic that Mom would tolerate this new treatment plan well and hopefully have minimal side effects.
Mom is in good spirits and is overall feeling well. She was happy to hear that the doctor wants to try her on a lower dose of steroids, which will hopefully only help her feel better.
Prayers and crossed fingers that she gets to start her next round of treatment next week. We want to continue to take this bull by the horns and not wait another minute waiting to fight it!

Tales from the kids ....

Three funny stories that come directly from the grand kids......

Austin, Katie, Mom and Patrick were all having a conversation in the living room one day. The conversation turned to Mom and Patrick. Katie and Austin watched and listened quietly while Mom and Patrick continue to discuss whatever it was they were talking about .... Austin leans into Katie and whispers "When is Nannie going to get a job?!?!". Katie politely explained that Nannie is now retired. LOL

Mom, Jim, Owen and I went out to dinner to celebrate Mom's last radiation treatment. WAIT ........As a precursor for the story I should tell you that Owen was really sick last year with a flu and needed a suppository. With that said ... I will continue. Anyways, we are all in the car driving home when I announced to Owen that we went to dinner to celebrate that Nannie didn't have to take medicine for a while for her Cancer. Owen replied in a JOYFUL voice "Nannie you don't have to take BUTT medicine anymore?!?!?!". After talking we found out that Owen totally expected that Nannie would need a suppository because she is really sick ... and he needed one when he was really sick. Mom made sure to let him know that she never needed that type of medicine through all of this. LOL

On Sunday we were all over at Mom and Jim's house chatting in the living room while the kids played in the spare room. Austin came out of the room and announced that he found a digital camera and started showing us the pictures that he took. Once we looked at the pictures our conversation resumed. While we were talking we noticed Austin go around the back of the couch to take a picture. Little did we know, he was taking a picture of Mom's now visible scar from the brain surgery. When he was done, he came around the couch just as happy as pie and quietly went over to his Mother. He discretely shows her the picture of Mom's scar and said "Look I got a picture of Nannie's purple spot!" LOL

With those said ... Mom is feeling well. She is happy to have a couple of weeks off of the non-stop doctor appointments. Jim is enjoying his job and they are enjoying their time together.

Week Six - CELEBRATION!

Today marks the LAST DAY of Mom's radiation therapy and boy is she happy! She is doing pretty good. She is tired (to be expected), weak and swollen in the face. The weakness and swelling is most likely from the steriods and she is currently weaning down from 4mg to 2mg. We will now sit back and wait for the next MRI to find out what the next phase of treatment will consist of.

Jim started his new job and is enjoying it. They both seem to be getting into a routine, and liking getting their lives back to "normal". Mom went out to dinner with friends on Sunday night and had a really good time. Below is a picture from dinner. I think it is a great picture, Mom can't wait to get rid of the swelling in her cheeks. :)

Miles for Hope

The Miles for Hope 5k Walk/Run is right around the corner. It is on Sept 26th at 8am. Below is a link for more information regarding the event.

https://www.milesforhope.org/index.php?option=com_content&view=article&id=116&Itemid=148

I will be out there with my family and will either be doing the walk or the run depending on how I feel. I hope to have as many people join us as possible to help raise money for a very worthy cause. My Mom plans on being out there to greet us over the finish line. This of course is all depending on whether or not she is feeling well enough. This run is a major mile stone for us as it comes at the tail end of my Mother’s first phase of treatments. I have provided the registration information below. Please let me know if you plan on doing the walk/run so I can send out more information to you about race day.

https://www.milesforhope.org/index.php?option=com_civicrm&task=civicrm/event/register&id=6&reset=1