October 15, 2014

Yesterday would have been my dad's 85th birthday,  I miss him everyday.

We survived a very hectic summer, Sarah and Greg both worked a lot!
Sarah has a new love, James, they have been friends for a long time, and are spending a lot of time together.  We like him a lot, especially since he makes her so happy!
Sarah finished up most of her inoculations this summer, only one more to go.
She is back at school and doing very well; working hard at her classes, and her field work.
I think she will make a wonderful social worker.

This Friday is Sarah's 4 month MRI and Doctor appointment, needless to say I have been eating chocolate non-stop!

Sorry so short, but more to come on Friday.
m

progress

wow, I have been a very negligent blogger.......

Life is moving forward at a very fast pace.
The school year is over and summer is upon us; both Sarah and Greg did really well this past semester, I am one proud mama.  With summer, comes work; Greg is bar tending and Sarah is working as a camp counsellor again.  Sarah is also starting to do field work for her Social Work major.

Sarah's health is great.... last MRI in February was clear, next one coming up this month.

Sarah celebrated her 22nd birthday, and her 2 year post transplant birthday in May.  In reality she celebrated for the entire month!  You go girl :)

Zen, Sarah and I were interviewed for a film about the family care giver center at Overlook Hospital, we get to see the film this coming Saturday.  Looking forward to seeing our hospital friends.

Time to switch the laundry, promise I will be back soon.....

Angry

I am angry today. I have been thinking about Sarah, and all she went through as I sent her story off to the 15-40 connection.  They are an organization that helps young adult cancer patients/survivors.
I am angry that she had to go through the experience of having cancer.  I am angry that life isn't fair.  I am angry that some people are mean, especially if their meanness is directed at my daughter.  These angry days do not come as often as they used to, but they do still come.  Hopefully I will snap out of this angry mood quickly!

I will never forget Sarah's story, in case you have, here is a recap.  Remember, the moral of the story: Know your body, if you don't feel right go to a doctor and don't stop until someone listens!

Sarah’s story:

 In 2011, after Thanksgiving break, my 19-year-old daughter, Sarah, went back to college to finish the first semester of her sophomore year.  She was focused on final projects and exams, determined to do well. She called us several times complaining of a stomachache and stress.  There were times when she was so upset, even her dad couldn't get her to calm down, we attributed those outbursts to the stress and planned on having her talk to someone over winter break.  The first weekend in December, Sarah called and said her stomach and head really hurt, we told her maybe it was her appendix, and she should go to the emergency room and then call us.

Imagine, at the time the worst thing we could think of was appendicitis!  Sarah called us and said the hospital did all kinds of tests, including blood work, a pregnancy test, and a cat scan of her abdomen.  They couldn't find anything wrong and sent her back to school.  I went to see her the next day, took her to lunch, gave her a pep talk and headed for home, she seemed no worse for the experience.  One week later Sarah babysat for her cousins and had a great time, when she got back to school she felt nauseous and vomited.

She felt sick the next day, but thought she had picked up a little bug from the cousins, finals started that Tuesday, 12/13/11 and she was headachy and stressed.  Being my usual helicopter Self, I made the necessary calls, got her out of her exams, and prepared to go get her that day. True to form when the Dean of students called to let her know she was excused until after break, my little fighter told him, "no way, I am not waiting, I do not want to study over break, and I will take them now,” so much for mom's help. Sarah’s brother Greg picked her up on Friday 12/16/11 and they headed home, looking forward to a fun winter break.  Alas, Saturday came and Sarah was again not feeling well, so instead of relaxing, she went to her first of many doctors’ appointments.

A tired, stressed out 19-year-old goes to the doctor; she says she has a headache and feels nauseous, he says flu.  As the symptoms continued we paraded Sarah to a host of other doctors: orthodontist for possible TMJ, psychologist for crankiness, back to primary care, this time they said strep, and did blood work for mono and Lyme at my insistence; then onto the gynecologist, we thought maybe her hormones were out of whack.  Through all these attempts to figure out what was wrong, Christmas and New Year's came and went, and poor Sarah basically slept through it all!! Finally on January 3, the primary care doctor called and said that Sarah had Lyme disease and a prescription was being called in to the pharmacy.  Finally, we knew what was wrong; Sarah would take medicine and would soon be well!  Still barely eating and vomiting, Sarah took her meds and kept on sleeping. The next afternoon, Greg noticed that Sarah's pupils were dilated, when I looked it seemed as if she was crossing her eyes, so off to the eye doctor we went.  While examining Sarah's eyes, the doctor noticed swelling behind her eyes and a change in her vision, since she supposedly had Lyme disease, he called an infectious disease dr. and got us an appointment for 9am the next morning.  The ID doctor was not convinced that Sarah had Lyme, and was considering doing a spinal tap, until she checked with the eye dr.  After hearing his findings, she immediately called a neurologist and set up an MRI appointment for that same day. All Sarah wanted to do was sleep, but we dragged her to "1 last appointment," famous last words!  The MRI was scheduled for 2 pm, it was an open MRI, so I stayed with Sarah, and we were there until 3:30 pm.  At this point none of us had eaten, we were all tired and cranky and just wanted to go home!  At 3:45pm my husband’s phone rang, and our lives were changed forever!  We were instructed to go directly to Overlook Hospital where the Neuro team would meet us.  I think we were both in shock at that point, we went through the motions of getting her admitted: Neuro Critical Care, our baby was really sick.  Later that night, after Sarah was hooked up to several monitors, and tests were scheduled for the following day, the reality started to sink in.  I stayed at the hospital with Sarah and my husband went back and forth.  Our days were filled with fear, hope, and anticipation as Sarah had test after test to determine what the mass on her brain was.  After Six days filled with 2 MRI's, a cat scan, a burr-hole biopsy, an EEG, several neurological evaluations, and more blood work then I can count, we went home armed with steroids and anti-seizure medicine to await the pathology reports.  On Monday 1/16/12 we got our answers, we headed back to Overlook Hospital, this time we were instructed to enter through the Carol Simon Cancer Center, I will never forget the look on my daughters face as we stood in front of those doors, she just stopped, looked, and said, "You never told me that I had cancer!"

Sarah was diagnosed with Primary Central Nervous System (PCNS) Diffuse large B-cell Lymphoma, (cancer in her brain).  This cancer is extremely rare, and almost unheard of in someone her age, most patients are well over 60; therefore going the pediatric route was not possible.  We went to the Cancer Center at Overlook Hospital, as well as to Sloan Kettering in NY; Doctors at both facilities recommended a regiment of chemotherapy.  We chose to stay at Overlook Hospital.  Phase 1 lasted for approximately 4 months, with 4-5 days out of every 14 spent in the hospital receiving the treatment, of course there were also many "outpatient" treatments/tests done as well.  There was so much information to digest, Sarah was very sick, treatment started immediately.  Although we were able to see a fertility specialist, there was no time for anything to be done.  Sarah had a port inserted in her chest to facilitate the treatments.   After her first treatment she was given Neupogen shots to increase her white blood cells in preparation for stem-cell collection.  We had to plan for Phase 2, the stem-cell transplant, before even starting phase 1.  I kept a notebook full of all of Sarah's medical information with us for every appointment; it filled up fast and was extremely helpful. The doctors and nurses were very impressed.  Sarah made it through phase 1, and went on to have her stem-cell transplant.  There were many emotional outbursts as she tried to comprehend what was happening to her. Over the span of 1 year, my beautiful girl was subjected to numerous tests, needles and treatments; she lost her hair and the steroids made her puffy and a little crazed.  Sarah had to miss 2 semesters of college, which was unbearable for her to deal with.  I am proud and happy to announce that Sarah was able to begin school again in January 2013.  She still has MRI’s and blood work every 3 months, but is doing well. 

This all came about so suddenly and unexpectedly that we as a family are still trying to digest it all.  

I now know more about cancer, drug regiments, medical tests, etc. then I ever thought possible.  Cancer is a horrible, life altering disease; but I am proud to say that my daughter fought her way back to health and is a stronger more determined young lady for the experience.

January 6, 2014 2 years and counting......

"Good morning Mom, do you remember what happened 2 years ago today?"

Yes Sarah, it is a date I will never forget........
We started that fateful day with an appointment with an infectious disease doctor, as we had been told Sarah had lyme disease.  After a look at Sarah's crossing eye's the night before, our wonderful eye doctor insisted we investigate further.  In our quest for answers, Sarah was finally sent for an MRI.  As we were getting back in the car, we got "the call"  go straight to Overlook hospital, a Neuro team is waiting.  The journey began; tests, scans, biopsy, more tests, IV steroids to control the swelling in my baby's brain.  I sat next to her when she was awake, trying to calm her fears, when she slept I walked the halls, crying and praying that my child would not die.  After a week in the Neuro ICU, the diagnosis was given, CANCER, very rare, very serious, very scary!

Well, here we are 2 years later: six rounds of Chemo, too many medications to count, stem-cell transplant, quarterly scans, and a happy and healthy strong young woman to show for all that agony.


So you see Sarah, I will never forget that day, or any of the 730 days that followed, they are engraved in my memory and in my heart.  I am thankful everyday that you were strong enough to fight this awful disease, and that I was strong enough to fight for you when you wanted to give up.

Cancer changed all of us, Sarah, Zen, Greg and me.  I hope we have changed for the better, able to appreciate each other, and everyday that we have together.

Sarah's message to all:
KNOW your body, if you don't feel right find a doctor who will listen.  Don't give up until you get real answers,  your life may depend on it!!!!!

Happy/Merry/Happy

Greetings
Hope everyone enjoyed the holidays.  Things around here have been crazy since Thanksgiving, busy decorating, shopping, knitting and cooking.  Hard to believe that 2 years ago today we were trying to figure out why Sarah was so sick, poor kid spent the entire month of December feeling awful.  If only I knew then what I know now, trust your body, if you don't feel right find a doctor who will listen.  Don't give up until you do!  I thank God everyday that we finally found the right doctors, and made the right decisions to get Sarah the help she needed.  I am happy to say that she is doing very well, and is enjoying her winter break this year, though she is anxious to get back to school and her friends!

Christmas Eve Zen made his traditional shrimp and scallops for dinner, and lemon sole for me. It was a quiet evening at home for the four of us; the calm before the storm.  Christmas morning we were up early, (thanks Sarah) opened presents and left for Mom's in Saratoga by 10:30 am!  Christmas dinner with the family was wonderful, I made the lasagna and a quinoa casserole, mom made an antipasto and shrimp cocktail, all my sisters brought appetizers, and we had a sit down dinner for 29 people.  Dinner was followed by lots and lots of desserts; including tiramisu, "dirt" and lots of special cookies.
The kids, ages 5-23, enjoyed each others company and had a great time just being together; it is always great to see how well they all get along.  We then had all 29 people spend the night between mom's townhouse and one of her neighbors houses; followed the next day by lunch at a local restaurant.  It was great to spend time with my mom, sisters and their families; of course it all ended much too soon, and before I knew it we were headed back home.

The New Year is just days away, I pray it is a happy and healthy one for all.

xo maria

Christmas Past

Favorite Christmas picture ever!!!

Christmas Present

Thankful

Today is a day to reflect  and give thanks.  I am thankful for my family and friends, for good health and good food.  Chef Zen has the "feast" under control, the house smells wonderful!  The parade is over, so now I am watching  a Christmas special on the Hallmark channel and thinking about all the decorating I want to do this weekend.  Hope everyone enjoys this special day, sending you all love and good wishes for love, health, and a happy holiday season.

Other Stuff

 The past couple of months, while all was quiet on the Sarah front, Greg was plagued with a very weird ear infection!  Just imagine, after all that has happened in the past 2 years, you are awakened at 3am by your 22 year old son who is crying in pain and wants to be taken to the hospital.  Very scary to say the least!  After the middle of the night hospital run, Greg had to go to an ENT, where his ear was drained, and he was given medicated ear drops.  He had to go back every 2 weeks for 2 months to have the ear looked at and drained; a very painful experience to say the least!

Speaking of pain, I have had a pain in my right hip since August! To make a long story short, after several visits to several doctors, a CAT scan, an x-ray, and an MRI, I have been diagnosed with severe arthritis in my hip, lucky me.  This coming Friday I have an appointment to get a steroid shot in my hip, and then physical therapy will begin!  Cataracts at 51, arthritis at 53, what the heck is happening to me?? :(



October 14th would have been my Dad's 84th birthday.  I went to Saratoga to be with my mom and we "visited" dad.  I still miss him everyday!










My amazing mother is doing well; filling her days with creating beautiful pottery, good books, exercise classes, friends and family.  She misses my dad, but he would be so proud if he could see her now.  His memory lives on in all of us, and we happily remember all the wonderful years we had together.

At the end of October I headed back to Saratoga for our annual "girls" weekend.  Myself, my mom,  and my 4 sisters spent a wonderful weekend together; eating, shopping, eating, telling stories, eating, and reminiscing.  Dad would have really loved all the eating!

Next week is Thanksgiving, 

I am thankful for so much.

:)