DAD

Dad peacefully passed away at 11:45 pm last night (July 25, 2010). We are so glad that he was home and that we were able to be with him. I have so much that I want to share with you about him but at this moment I am finding it hard to put them into words.

We are planning a funeral service for him to be taken place on August 14th at 10 am followed by a gathering to celebrate his Wonderful Life. This service will be held at Blessed Kateri Tekakwitha located at 22508 Copper Hill, Santa Clarita, CA 91350.

In lieu of flowers we are in the process of setting up a memorial fund toward a charity which will be determined in the near future.... I will post it here when it is set up.

We continue to thank you all for your prayers and well wishes and are so very grateful to have you all in our lives. Time will heal the sadness and empty feelings we feel now.

We will never forget you DAD and we will cherish all the moments and memories and most of all the laughter you created and shared with us. DAD, We Love You... Be at Peace!!!

I Hear Laughter in Heaven!!!

The Angels came to take dad home!!! We are all saddened to see him go and rejoice that he is at peace in heaven.

The Power of Prayer

Everyone in the family is very present to our father and thank all of you for your prayers. We have a daily goal each day to balance his medications, his comfort level, and his ability to be able to communicate with all of us. He continually speaks of love and how much he loves all of us and you. We respond with words of love and let him know it is okay to let go. Our mother has been a true saint in all these moments, patiently feeding him what he is still able to eat and celebrating with him their 55 years of marriage. We have prayed to Blessed Kateri Tekawitha throughout these days placing a relic of her on his bedside and praying the prayer for her canonization. We ask Blessed Kateri for a complete miracle for dad and if not, a very peaceful death filled with visions of the angels and saints. Our father has spoken several times that he knows that our brother, Albert, who died of leukemia, is waiting for him on the other side of life. We are blessed that we can continue to have some very beautiful communication with dad and we are aware that this may soon end. It teaches us to value life one moment at a time and it is a lesson to all of us what is most important about life: the gift to love. To love and to be loved, that is why we have each come to the planet. We thank our father for giving this gift to us! Father Alexander

Waiting On An Angel

Music has carried me through many tough times in my life. It is one of the few things that I could never live without. I perceive it as God's way of speaking to me. I came across this song about a year ago and it instantly touched me. As I listen to it now, I think of my dad and find comfort. I would like to share it with you....

Life is a Roller Coaster Ride

Each day seems to run into each other. I have to take a second to remind myself what date and day of the week it is. Life is precious and every moment with dad is a moment that I will cherish. For us, time passes with a knowledge of what we are doing and accomplishing for the day, but for dad it is far different. He continually asks what day and time it is. He speaks of many different people who he has met during his life... some of them I am familiar with and some whom I have never met or remember, many have passed on but some are still with us. As he talks to them and of them, I wish I can be in that world where he drifts off to. He smiles often as he speaks of them and sometimes cries. It has been a whole new experience for me, some of it very painful and some give me a feeling of awe.

Mom continues to work through the realization of what the future will be. I have seen her and dad share gentle moments of love and understanding and also the painful moments as they realize that their time together is limited. It breaks my heart!! I am torn with a desire to pray for an end to his emotional and physical suffering but I also pray for more time with him. This roller coaster ride is wearing on all of us.... where will it take us and for how long? God has his plan and we are along for the ride. The ride continues...........

Keeping Us Smiling

As all of you know, our father has always had a wonderful sense of humor. We have heard him tell the same jokes for decades. As he faces the challenges and physical pain that come with the process of death and dying, he continues to keep us all smiling. This evening he took a wash cloth and placed it over his face to make us laugh. There is no doubt that the angels are with him. We have been praying to Blessed Kateri Tekawitha for a miracle or a peaceful death. A relic of Blessed Kateri has touched dad's hands so that he may have all the blessings he deserves at this time. We are privileged to have him one more day in our life and he is helping us to see the truth of what it means to live in the present moment. Thank you to all of you once again for your prayers and good wishes. They are helping us and our mother to walk this journey with our dad. May you all be blessed for your kindness to us. Please pray for dad that he will sleep well since the medications can make him restless..... Father Alexander

Our Father's Courage

Our father continues to be comfortable at home and the hospice nurses were terrific in teaching us how to monitor his medications and comfort level. He is grateful for all your prayers as we are too. We are also grateful that we have had a father who exemplifies the life of a simple man who is now ready to go back to God. We have been praying to Blessed Kateri Tekawitha for a miracle and if not a miracle that dad will rest in the arms of the angels as he goes to be united with his creator. Dad is very much ready for the moment of death and he has shown all of us how to face death without fear for our loving God is there to carry us into the next life. Dad is still able to speak with us but we do not know how long this will be available for us so we are enjoying all the moments that we do have with him. It makes us all realize both the beauty and the fragility of life. Please keep our mother in your prayers, Therese Lewis, as she walks through this moment with our father. God bless you all! Father Alexander and Family

Dad Is Home!!!

Dad is home now... he is declining faster than anyone anticipated. The doctors seem stunned and I hope a little guilty seeing the condition that dad is now in. Yesterday was a long tough day for all of us and we are bracing ourselves for the tough days ahead.
I arranged for hospice to assist us. Alexander has a friend who is a nurse and she is guiding us through the use of all the medications. She has been a blessing!!
Dad is having a difficult time eating and breathing. The paralysis has caused many complications and it is just a matter of time. He was extremely happy to be home in his own house with family surrounding him. Mom is hanging in there... she was hoping to have more time with him. She is dealing with the situation as best as she can and has all of us to help her through.
The family needs this quiet time with him. We appreciate your prayers and well wishes and I will definitely keep you all posted on dad's condition. Much love... Mary

The Unknown

It has been over 48 hours since dad became paralyzed and the doctors have pretty much informed us that he will never walk again. I am stunned by all that has transpired within the past two days and I can only imagine what dad is feeling and can't even comprehend what may be going through his mind. It all seems so surreal.
Dad's radiation oncologist will attempt one last effort to help ease the pressure on his spine by giving him 3 intense doses of radiation that will be concentrated on the tumor located around his thoracic spine. Each dose is equivalent to 5 regular ones. We are hoping that it may give him feeling in his legs even if it is temporary. Even if this treatment works, unfortunately dad will be back in this same situation sooner or later. The tumors are aggressive and it is just a matter of time.
We are currently working on his home care situation. Mom does not have the capability to take care of him and his needs. We are fighting (and I mean fighting... the hospital would love it if they could have discharge him today) to keep him in the hospital for as long as possible. We have talked with hospice, social services and the doctors, and have found that the options that his insurance will cover are very limited. The plan now is to have dad move in with us and have hospice provide what is needed. They do not provide personal care but do supply any medication, equipment, and supplies we will need. It will be up to us and the family to keep him clean, comfortable, and to take care of his personal needs.
We do not know how much time dad has with us and are doing the best we can to prepare for whatever life brings. He is in constant pain and experiences many side effects from medication. We thank you all for the offers to help in any way but at this point in time, there is nothing anyone can do. All we ask is that you keep him in your thoughts and prayers. I will try to keep you posted daily. God bless you all with good health... Mary

An Unexpected Turn For The Worst

Today was one of the worst days of my life. Dad is now paralyzed from the waist down!!! At 1 am he got up to go to bathroom and as he was walking back to bed his legs just went numb and gave way. My mom called my brother to come help get him back in bed. At that time he was able to wiggle his toes so mom thought it was due to the double dose of morphine. When I got there today dad told me that his legs were still numb.... I asked him to wiggle his toes which he did slightly but I also noticed that he could not move or lift his legs so I immediately called the doctor's office. Grace the nurse informed me that the morphine would not cause such a reaction and that I should call 911, which I did.
According to what I was able to understand and absorb... there is swelling around the tumor located in his spinal area and the swelling is causing pressure that is affecting his spine causing the paralysis. The next 48 hours will determine if the paralysis is temporary or permanent. The swelling could be due to tumor but also to the radiation he is receiving. I am not getting any clear answers from the doctors and I am very frustrated and non trusting of what they tell me. So far the doctor's have been wrong on all accounts.
He finally was taken from the ER to a room around 8:30 pm (approx. 7 hours in ER). I am so exhausted and numb myself. When I left dad he was resting comfortably. I can't imagine what he is thinking or feeling... I wish there is more that I can do... I feel bad for leaving him there... I feel so helpless!!!

Medication Nightmare

Last week was a busy week.... Dad completed 4 days of radiation and he had his first treatment of chemotherapy on Friday. The plan is to treat dad with 7 cycles of Carboplatin. One treatment for 7 weeks (6 more to go). The dose of chemo is mild and takes over an hour to administer. The chemo is used to make the tumors more sensitive to radiation. There are side effects but the doctor does not believe he will experience any.

Well, first week of treatment is complete and now it's time to focus on week 2. Today was a very tough day. We are having a difficult time managing dad's pain. For the last 48 hours he has complained of pain with very little relief. None of the pain medication in the doses that we are giving him is helping. I am not sure why. When we spoke with the radiation oncologist today we were so focused on trying to come up with a solution on what combination of pain meds would relieve his pain, I forgot to ask the doctor why his pain meds aren't working or why his pain level has increased.

We are going to try to increase morphine just before bedtime to help him to sleep and get some rest. It is all so overwhelming. I am finding that once we start to feel like we are managing things, something new arises.... whether it be a side effect from meds (hiccups, constipation, nausea, swelling) or dose of medication that no longer works. It is a constant guessing game that we are hoping and praying to win.

Tomorrow is a new day.... we will focus on that!

33 DAYS AND COUNTING

Radiation treatment has begun. Each day is filled with new experiences and a continued absorption of knowledge. There are many new questions that pop up daily and the answers are sometimes vague or unanswered because the answer depends on many variables. We are still waiting for his oncologist Dr. Dekker to return our call inquiring as to when his chemotherapy will begin. From what I understand, his radiation and chemo treatment must be done together in order to get the maximum effect in fighting his cancer. Dealing with the doctors can be so frustrating!!!!

Day #1 - His first day of radiation went smooth. Dad was very nervous and anxious as to be expected. Radiation appointment took approximately 15 minutes... very quick. We don't expect to see any side effects from radiation so soon... I believe maybe by week 2 he will start to feel discomfort. Again, there are so many variables to consider so we will just have to wait and see and pray for the best.

An Understanding

In my first blog entry, I shared with you the urge to start a blog with a big question of my purpose or reasons for doing so. I have not posted any entry for over a month and there are a few reasons why... but the main reason is that I recently was informed that my father (Alexander Lewis) has lung/thoracic cancer that has also spread to his ribs. He has been in pain since August of 2009 and he has been to several doctors to try to determine the cause. He has been poked, probed, x-rayed, sent to physical therapy, he's been given all kinds of medication, he's been told the pain is just old age and arthritis and possibly a torn tendon and in between all of this, he suffered a severe case of shingles. Now it is ten months later and they tell him he has stage 3A lung cancer. What a messed up world we live in!!!!

I understand now why I was driven to start this blog....
There have been so many of his family members and friends who have inquired about his condition and how he is doing. I will do my best to keep you all up to date about his latest challenges and progress through this journey he is on. Through all of this, he has managed to keep his sense of humor and a desire to make everyone he meets smile back at him. He amazes me!!! He tries to remember the names of everyone we come in contact with and sometimes has a nickname for them.

Last week was a little tough...
Monday morning he was at the hospital by 6am (thanks to my sister Geralyn) to prep for a biopsy of tumor. Doctor needs to make sure that the cancer is lung cancer and not colon cancer spread to lungs. The course of treatment is determined by the type of cancer. He was so nervous and worried but he as always made the nurses laugh and smile and of course he had to know all their names (I can't remember them all but I bet he can). It was a long tiring day but all went well.

Tuesday he had off. No doctor appointments but on top of his usual pain, he had major pain from where the biopsy was take.

Wednesday: I received a call from the City of Hope in response to an application I filled trying to get a second opinion and possible treatment there. They informed me that his insurance does not include City of Hope as a participating member and that I would need a referral from Blue Shield Facey. Well... I was also informed that we can put in a request for City of Hope, but Facey will deny it. He is allowed a second opinion but only with an oncologist within Facey. What a Bunch Of Bull!!!!
Dad had an appointment to see a radiology oncologist which went well. Dr Nancy Ellerbroek and her assistant explained the process of the radiation treatment he will be receiving. She will be using a machine called Tumo Therapy Hi-Art System to administer the radiation. There are only 27 of these machines in the US and they are fortunate to have one of them and it is the same radiation machine the the City of Hope uses (I was glad to hear that). He will be receiving treatments of radiation Monday - Friday for the next 33 days starting Tuesday July 6th. The doctor also prescribed steroids to help with the inflammation she believed was attributing to his pain and thought that we should double his dose of morphine.

Thursday: He returned to radiology oncology to get a mold made of his upper torso which will assist the doctor during radiation treatment. A CT scan of dad was take with the mold in place... what this does is gives the doctor a picture of the location of his tumors, which she then in turn programs the machine to target the exact areas and spots she wants the radiation treatment. Pretty amazing!!!
Dad started taking the steroid medication that was prescribed to him along with the increased dose of morphine and for the first time in 10 months, he told me that he felt no pain. WOW... I was elated.

Friday: A much needed day off from doctors and test. Family came for a visit and brought a medical bed. Dad had a very active and good day spent with grandkids. He unfortunately had a bad reaction to the steroid medication which caused hiccups throughout he day. The doctor recommends that he continue to take the steroids to help with pain if he can bare with the hiccups and that is he is doing.

The next step in his journey continues this week with radiation treatment and with the possibility that chemotherapy treatment will also begin. I will try to update you all on a regular basis. If you are interested in his progress, check this blog. Thank you for your love and support and keep those prayers and positive thoughts coming!!!