Until we are together again

My beautiful mom went home peacefully this morning exactly 16 months to the day after she was diagnosed with a brain tumor. We took this picture on January 31st while we were waiting for her to have her first surgery to biopsy what we would eventually find out was a grade 4 glioblastoma.


Mom fought the disease so hard and I will forever be grateful for the time that we had her here with us. I told Alex this morning that grandma was happy that he kissed her yesterday and that maybe she was waiting to say one final goodbye to him before she went to heaven and he smiled and nodded.

In my heart I know that mom is now happy and reunited with the 2 loves of her life, my dad and my wonderful stepfather who came into her life after she was widowed and swept her off her feet and loved her for 11 years until he passed away. I told her yesterday that they were waiting for her and that she shouldn't be afraid because they would welcome her with open arms and there would be no more pain and no more needles or medication where she was going and that I would see her again someday.

The Hospice Inn and all of the staff there were so caring and loving to mom and all of us and I will be eternally grateful to them for everything they did to make this process as comfortable for us as it could be.

My dear mother was someone that if you met her you instantly knew she was special and there wasn't one person that wasn't changed by her outpouring of love and compassion for other human beings. She always went out of her way to help others and what she chose for her line of work proved that over and over. Working with infants and toddlers for years and then eventually moving on to caring for seniors in an assisted living community mom always had a job that put her in a caregiver role so for me it was both an honor and a privilege to have been HER caregiver for this last part of her life.


Wherever you are mom, I know there are endless beautiful flowers there and that you are smiling from ear to ear. I love you and miss you and I know that someday we will be together again.

Grateful for our Veterans and Armed Forces

Today we reflect and remember those who served and continue to serve this amazing country that we have the privilege to live in...one where there if freedom and democracy. I thank my son, Robert, for giving 4 years of his life for that very freedom that we hold dear.

Mom's nurse commented to me yesterday, "There were 2 wonderful young men here this morning and they had both come off the overnight shift and they obviously love their grandmother very much, were those your boys?" and I proudly answered that they are, I couldn't ask for better sons and I know that mom felt them and their love for her.

Today Alex came with Jim and I to visit mom and he was apprehensive but he did kiss her and tell her that he loves her after I told him that she was just sleeping. Mom smells so good every time I bend to kiss her so I know the aides are doing a tremendous job on keeping her clean and comfortable and I will forever be grateful to the staff at the Hospice Inn. I have actually been thinking about doing some volunteer work there in the future and I plan to discuss that with the social worker on staff.

I hope that whatever you are doing on this holiday you are spending quality time with someone that you love.

Sunday update

Mom was running a fever today and the nurse that was taking care of her said that is something that happens with some patients close to the end of life. :-/ I just wanted to post quickly and let everyone know that my afternoon with mom was a quiet one, she is sleeping very comfortably and peacefully but she managed to open her eyes twice and look at me although today she didn't smile when I asked her. I just sat and read my book and held her hand, it was a quiet afternoon for me.

50 years ago today

May 23rd, 1959 and it was the day that my mom and dad got married! If dad had lived they would be celebrating their 50th wedding anniversary today. Mom was just 17 years old and yes if you followed the fact that yesterday was her birthday...she was 16 and they wanted to be married but waited until she turned 17 and the very next day they were husband and wife. When my dad passed away they were married just 26 years and he was taken from us way too soon...at the age of 47...but now I think about it and mom is 67 and will not make it to her next birthday so it boggles my mind when I think about the numbers...married at 17....widowed when dad was 47 and she will likely pass away at 67. It's odd but since my stepdad passed away in 2003 mom always would have a thing with numbers and whenever she would look at the clock and see certain numbers she would say that Koop was telling her something or sending her a message like if we would be talking about doing something or not and she would look at the clock and it would say 11:11 she would tell me that Koop said "Go for it, Neesee!" It's just weird...so many "7"'s in milestones in mom's life.

Today was a good day for me because even though I realize that mom's time to leave this world is coming close she opened her eyes wide and smiled at me 3 times this afternoon and I will cherish this day forever!! She knew my voice and knew that I was there with her and gave me that smile that she always did whenever she was happy or comfortable. I feel blessed to have had that time with her this afternoon and I look forward to spending more time with her tomorrow, no matter what the outcome. I have been so pleased with the level of caring and treatment she has received at the hospice facility and it has helped me to know that she is being treated with love and dignity by everyone there. The social worker and the director have been wonderful to me and always ask about how Alex is doing because they know how close he was to his grandma. Alex is going to be referred for grief counseling and will be able to attend a free summer camp with other kids his age who have suffered loss in their lives and I think it will be good for him considering the fact that he lost his cousin last year and now he is losing his grandma at such a young age.

I spent some more time working in my scrapbook room today and I figured I would post some pictures of my new stainless steel pegboards. I have 2 sections that are 2X4 and they are on either side of the window that faces the front of the house. I like to work by natural light so I have my table where I'll be working on my layouts right by the window.




I am pretty excited that AC Moore has a 50% coupon for tomorrow and monday so I should be able to pick up the last 4 Jetmax cubes that I need to complete my storage wall. :)

Happy Birthday Mommy...

...I love you.

Today mom turned 67 years old and I quietly sang Happy Birthday as I sat with her this morning. I had planned to go to work in the afternoon but I just couldn't put on my happy face and go in so I just kept myself busy working in my scrapbook room and trying to organize the chaos in here. Tonight I organized my ribbon...Nancy says mom would be proud of me.



I can't seem to get David Cook's song, "Permanent" out of my head...it is a must have if you have iTunes...download it and you will make a donation to cancer research...the live version that he performed on American Idol was amazing.

Is this the moment where i look you in the eye?
Forgive my broken promise that you`ll never see me cry
And everything, it will surely change even if i tell you i won`t go away today
Will you think that you`re all alone
When no one`s there to hold your hand?
And all you know seems so far away and everything is temporary rest your head
I`m permanent

I know he`s living in hell every single day
And so i ask oh god is there some way for me to take his place
And when they say it`s all touch and go i wish i could make it go away
But still you say
Will you think that you`re all alone when no one`s there to hold your hand?
When all you know seems so far away and everything is temporary, rest your head
I`m permanent
I`m permanent

Is this the moment where i look you in the eye?
Forgive my promise that you`ll never see me cry

American Idol Finale tonight

Well...another season of American Idol has come to an end and once again I didn't pick the winner...what else is new? Actually last season I loved David Cook but didn't think he would win and I was surprised that he did...I totally thought David Archuletta would win...strange...just goes to show you that anything can happen on reality TV.

I know that mom would have been so disappointed because she loved Adam just as much as I did...even when she was in the hospital recently she told the nurse, "He's my man...." when she could barely put 2 words together she managed to show her love of music to those around her. Mom would have truly loved the show tonight because Rod Stewart made an appearance and he was one of her favorite artists of all time. Tomorrow when I go visit her I will tell her all about how Rod Stewart performed tonight and how much she would have enjoyed seeing him on stage even if he didn't sing her favorite song, Downtown Train.

I love how mom and I shared our love of music together and how we both liked Adam Lambert from the beginning of the American Idol season...we had such similar tastes in music and there was nothing I enjoyed more than watching our favorite show together up until she wasn't well enough to watch.

David Cook performed tonight as well and they talked about his brother a little bit and I noticed that he was wearing a black arm band and it was a pretty heartfelt song that he sang and I'm sure it was incredibly hard for him to get through it...his brother recently died of a brain tumor about 3 weeks ago.

One of the highlights of the show for me tonight was when Adam performed with KISS...but when he sang part of "Beth" by himself it brought back so many memories from when I was 16 years old and in high school...it really is incredible how one song can do that.





I loved Peter Criss and the song Beth was so haunting and I adored it and I can remember a friend of mine was going to see Kiss on their tour and I wrote a letter to Peter and my friend gave it to him backstage and I couldn't believe it when the next day at school he handed me a handwritten note that he had written back to me! I suppose when you are 16 years old it doesn't take much to get your excited but even after all these years hearing the song performed on American Idol brought back all of those memories for me and I can still see myself holding that note and reading the words on the paper and showing it to mom and she was just as excited as I was that a famous person took the time to write me back.

Mom is not really conscious anymore and is sleeping almost all of the time but I know if we had been watching American Idol together tonight she would have heard that rendition of "Beth" by Adam and she would have remembered how much I loved that song when I was just a young girl. I know that Adam didn't win but I am sure he will be very successful just like past contestants who didn't make it to the finish. Rock on, Adam!

Blessings

The blessings in my life are my husband and my children....they are always there to help me out when I can't seem to make it through that day. Saturday was a really rough day for me spending the whole day with mom and seeing her obvious decline and also seeing her in some distress which I quickly addressed with the staff at the hospice and now she is being kept very comfortable as evidenced by what I saw when I visited her yesterday after work.

My husband spent time with her on sunday and again yesterday took my brother to visit her before he returned home to Florida. My sons have all been going almost daily to sit with her and to give me a break, as well. Still....when you have been a constant caregiver for 10 months almost you get this feeling of being 'lost' with nothing to do when faced with giving up the care to doctors and nurses and I guess that is what I am feeling now. I have decided to get myself back into more of a keeping busy routine so I'm going to work as much as I can manage and doing other things for myself. Tonight is my monthly scrapbook class and I am looking forward to seeing some of my friends that I have made over the past couple of years through taking these classes...we only see each other once a month but I still consider them friends and enjoy chatting and scrapping with them...it is such a wonderful and relaxing time and I know how much mom loved seeing what creation I came home with each time I went to a class.

Another blessing for me is that I will soon be able to hold my newborn nephew in my arms and tell him what a beautiful and special grandmother he has and that she loved him with all her heart from the minute we knew he was coming...I know that Nancy and I will make sure that baby boy will know his grandmother from all of the wonderful stories we will tell him over the years.

I am noticing a decline in mom's condition...subtle as it may be. She was almost looking through me yesterday and didn't speak at all when I was talking to her and she opened her eyes. There was a beautiful arrangement of flowers that came from my stepbrother, David, and his family but I don't think mom knows it is there even though I held it up and showed it to her she didn't respond at all. Still I visit and hope and pray that she knows I am there and that she feels my love and hears me whisper "I love you, mom..." in her ear when I leave.

One year ago today....

....I received a frantic phone call from my husband that our nephew, Jason, was in a horrible accident and that I needed to get to the hospital right away because he needed family there. Since my husband and his brother and sister were out in New Mexico visiting their mom because their stepdad was near the end of his battle with cancer I was the closest one who could get there quickly and I rushed over there to find Jason in a trauma room. I can't believe that a year has passed since that horrible day and there is not a day that goes by that I don't think about everything that was going on in my life at the time with my mom battling cancer and to have this happen to my nephew was horrific for our family.

If nothing else...the past year has shown me how important it is to live each day like it is your last because you simply do not know what will happen to you around the corner. You have to cherish the people that you love because you do not know if they will be taken away from you at a moment's notice or if you will have to sit and watch them waste away from a horrible disease. I am grateful that Jim and I have raised our children to value family and that each of my sons make time for their grandmother right now when we don't know how much longer she will be with us (as I type this my son, Robert, is on his way to visit with grandma so I can go home because I have been here for 4 hours sitting by her bedside). Jesse came to spend time with grandma last night and I love how her eyes light up when she sees him...he spent countless hours sitting with her over the past few months and they have grown closer...all of my boys have bonded with their grandmother so much since she has been living with us and I know each of them will have very fond memories of their time with her.

Sitting here and walking around and seeing all of the other family members visiting a loved one in the hospice house makes you think about so much...everyone here is dying and it makes you realize that we are all going to be at that stage someday and you hope and pray that it will be in a peaceful setting where people are trained to take care of your needs. The social worker here and all of the staff are really helpful so I'm happy about that.

Middle of the week

After a few days of uncertainty mom was placed in a wonderful hospice house today and I am feeling better about the decision to keep her as an in-patient for now. I had a meeting with the director of palliative care yesterday and she explained mom's MRI to me and the fact that medically she needs to be taken care of around the clock and it is more than I can handle for the time being. The social worker at the hospital worked so hard to get her into this facility and he gave me a huge hug today when the EMT's came to move mom to the facility and he told me they would take really good care of her there and that I made the right decision for her well being. I plan to write a letter to the hospital about Mr. Kevin Lycke because the way that he works with family members and advocates for the patient is amazing, I couldn't have asked for more from him.

The place where mom is being cared for is actually an assisted living community and the hospice network rents rooms out from them so it is a really beautiful place...almost like a hotel environment. I am not sure if mom understands that she is with hospice but she just kept saying "wow...wow...wow..." when they brought her into the room where she is staying and it truly is so peaceful and lovely there and the view from her window is wonderful. This is a picture of the outside of the building.



Aside from all of this I started physical therapy today for my back which has gotten progressively worse over the past few months. I have neglected taking care of myself but I finally realized after my recent blood pressure scare that I have to do what's right for me because my family needs me healthy as well. After just one treatment with the PT guy I can't believe the difference in my pain level!!! Wow! I go back on friday for another treatment and I have to be diligent in going to my therapy and continue with the exercises they give me to do at home when that time comes...I am not old enough to be having these pain issues and I refuse to let this get me down.

Today also marked the beginning of little league season for Alex. They didn't win tonight but it looked like everyone had a good time. Alex's bat decided to take a vacation, however, and he didn't get on base once tonight...better luck next game.

Weekend rollercoaster

It is pretty late on sunday night but I know that a lot of people are wondering about mom so before I go to bed (notice I didn't use the word sleep since it has been something that hasn't come easily for me lately) I will try to talk about the past few days.

Before I go any further I wanted to share that the oncologist told me that mom could only have about a week left with us because I asked him if my brother and sister who live out of town should get here and he said yes. The cancer grew very fast and in fact has grown into the other hemisphere of the brain so there really isn't any treatment that will bring her back from this, in his opinion. Robert got his flight booked and got here on friday afternoon and since Nancy can't fly anymore she and her husband, Paul, got in their car and drove 6 hours on friday to get here to see mom.

After 72 hours of mom being unconscious she woke up yesterday and started eating and talking to us as best as she can with the deficits she has had because of this cancer. While a part of you thinks this is a miracle the test results do not lie and the reason for this sudden turn around is because they raised her steroid dose and also the nurse that she had for the weekend backed off on the morphine they were giving her. So we have had a gift from God in that her children and grandchildren have had some special time with her this weekend.

I am truly hoping that tomorrow we will get some news on when she is going to be transferred to a hospice facility because she will be better cared for (in my opinion) once she is there compared to a regular hospital. I had hoped that she would have been settled into the Good Shepard hospice but it being the weekend nothing gets done so we have to wait for tomorrow.

The only positive in all of this is that I got to spend some more time with my little sister before she gives birth which by the looks of her could be pretty soon!! We shared some good family time and talked about a lot of our memories of mom.

Please understand that I can't make phone calls or answer many emails at the moment, I am doing the best I can just to stay on top of my family and what needs to be done for mom. I hope that everyone who wants to know about mom will just continue to stop in and read my blog entries.

Thank you for your prayers!

Another update

It is with a heavy heart that I come to let everyone know that mom has been registered for hospice and will be moved to an in-patient hospice care. The doctor told me today that the tumor has grown very fast and spread and there is no treatment that would bring her back from this and right now we are going to go with keeping her pain free and comfortable.

She fought this horrible beast with every ounce of her being and we are so proud of her for beating the odds and living this long with this cancer. I will update again when I can, please keep our family in your prayers and know that I appreciate all of the support that I have received from friends and family that post comments on my blog.

Mom update

I just wanted to update those of you that read my blog and let you all know that mom is back in the hospital. We are hoping to get MRI results today and find out what is going on, she has gotten progressively worse since I brought her home last week. Please keep us in your prayers.

Shower Day

Happy baby shower day to my little sister!! Both mom and I wish we could be there but I'm there in spirit and I feel that I contributed a lot to it...I made the invitations and the favors and since she's at her shower now and there is no risk of her seeing this before the party I can finally post pictures of my creations! My idea was to take a photo of each guest with Nancy as they came in and print the photos and put them in the clear acrylic frames which I wrote on with paint marker as a souvenir of the day. I made enough even for those that couldn't attend (lots of out of town guests on the list of invites) and we will add a photo of Nancy with all her gifts for those people. I think it's a good idea for those people to use the frames as a thank you for their gift even if they couldn't be there today. :)


The candies are blue M&M's and blue hershey's kisses with "It's a Boy" on the tags. I had the ribbons printed and Alex picked out the little bassinet to put at the end of the date since he was with me the day I ordered them. I think they turned out really cute. :)


We did a lot of planning and rearranging but managed to get most of the living room furniture in that mom had at her house, when she walked in on tuesday after I brought her home she said "It looks so pretty here." I think she was happy to see her furniture and her things here, it made her feel at home. Still have a lot of work to do...tons of pictures to hang up on the walls but it will get done eventually.



Mom's room was changed around as well because I put the large dresser that she had in her guest bedroom in her room and I added a small chair from her office as well as her prized heart shaped table with glass top where she kept some very precious pieces she has collected over the years.

Another mom update

It's been a few days and lots of discussions and phone calls later it has been decided that mom is not a candidate for surgery at this time because there is too much swelling and both doctors agree that she should receive some IV infusion chemotherapy and hopefully she will respond to that and the swelling and the tumor will shrink.

Mom is back up to 12mg of steroids and overall I think she had a better day today...the last 2 days were a bit on the rocky side....nevertheless I came home from work yesterday and promptly put her in the shower and washed her all up and put her in clean clothes...being in the same nightgown for 2 days isn't a great boost to your moral, in my opinion. She felt good afterwards and took a nice relaxing nap before dinner.

I find it interesting that the neurosurgeon would be the voice of reason that would help me to stop questioning my decision for mom's care. I never really thought he had good bedside manner and to put it bluntly he had the personality of a piece of cardboard when I dealt with him last fall...he didn't really talk to us too much but I felt that his surgical skills were more important and those were impeccable so who cares if he didn't really talk to me! Well last night when he called me after hours I felt such a sense of calm after talking to him and I thanked him for his kindness and his patience and support in explaining everything to me...it was like he was a different doctor this time around...who knows...maybe he sensed my apprehension and my worry. Whatever the reason, I'm glad that he called me and that both doctors agree on the next course of action. The IV infusion that mom will be getting is Avastin, a drug that is not FDA approved for brain tumors but is marketed for colorectal cancer, lung cancer and breast cancer. Clinical trials of avastin have had good results in the drug shrinking brain tumors so the company is seeking FDA approval for the drug to be used for brain cancer patients as well.

Next thursday is mom's first infusion...please keep her in your prayers that this treatment will shrink the tumor. We are only about 6-7 weeks away from a new little boy being born into our family and I pray that God will allow mom to hold her new grandson in her arms.

In other news, the house is still pretty crazy...stuff everywhere, boxes piled to the ceiling...but I will get through it little by little. I'm still trying to figure out how I'm going to put my scrapbooking stuff in 1/2 the space I had before...was I crazy to give up my larger room to my son? I'm figuring out a different storage system...it's taking me some time to work through it all in my head but I'll get it done in time.