questions

So many questions, so few answers.
Looking for inspiration to have something positive come from something horrible.
Here is to putting the past behind us and looking to a bright, beautiful, and healthy future for Sarah and our family.




Drum roll please.......

We just got "the call" we have been waiting for; Sarah begins the consolidation phase of her journey on Wednesday May 2, 2012!  Anxious, nervous, scared, excited, relieved.... I am on an emotional roller coaster; these have been the longest 4 months of my life.  The next month will be a difficult one, my baby has been through so much already; and as the psychiatrist agreed she has had to face an illness that no 19 year old should have to face.  The fact that she has "regressed" emotionally is a defense mechanism, the only way she has been able to deal with the enormity of her illness has been through "acting-out" her fear and frustration.  Acknowledging this will hopefully be the first step for all of us in helping her to deal with what comes next.  Keep those prayers and good wishes coming, we need all the help we can get!  Now I have to finish cleaning, Grandma and Grandpa arrive tomorrow.
XO maria

Good News

Today we made the trek down to Robert Wood Johnson Memorial Hospital/The Cancer Institute of NJ to meet with Dr. S and his team to plan for the consolidation phase of Sarah's treatment, aka, the Stem-cell transplant!  It was an early day, had to leave the house by 7:30am to make it down to New Brunswick for our 9am appointment.  The meeting went really well, once again we are blessed with a great medical team, they explained the procedure again, and assured Sarah that they would do everything in their power to make her approximately 3 week stay, as comfortable and painless as possible.  They also explained that she must do her part, and be a good patient in order to have a favorable outcome.  There is a light at the end of the tunnel!!! They all have high hopes that Sarah will have a complete remission and a full recovery;  this was the  news we have been hoping and praying for!   Doctor S and his team have to review Sarah's MRI and other medical records, and by the end of the week we should know when the transplant will take place.  On that happy note i will say good night, tomorrow is another day, and another Doctor.

Maria :)

Well, here we are again, Monday night, why do weekends go so fast?
Friday: Greg and Sarah leave for Connecticut, Lisa calls to say she and Clayton are on their way to NJ for soccer tournament, Sarah calls-no one around, where are they? What should I do? I call Lisa- can you detour and pick up Sarah at SHU? Yes, great! I call Sarah- Aunt Lisa on way, Sarah calls me- in car with Aunt Lisa, sisters just called, they were planning a surprise! DAMN! Murphy and his law are back messing with our plans.  Greg calls-what the hell is going on? Don't worry Greg-just another crazy, mixed up day!!  Many phone calls later: 4pm- Lisa, Clayton and Sarah arrive home to find me a little worse for the added stress-let's have wine!!
Saturday: Zen- golf opening day tournament; Lisa, Clayton and Greg- soccer at Rutger's Newark Campus; Maria and Sarah- Kohl's, 30% off coupon!!!  Dinner- all together, very nice, more wine!
Sunday: Bye to Lisa and Clayton at 7am, they are off to another soccer game and then home to Massachusetts.  Greg-work, yeah!!! Zen-re-framed photos???? Maria and Sarah- off to Connecticut for Theta Phi Alpha Founder's Day luncheon, good thing Sarah got a new dress at kohl's!  The luncheon was lovely, the sisters and moms that I met were very nice, seeing Sarah smile was priceless!!!!!
Monday: Laundry! Lunch and fashion advice with Michele, back to Kohl's with Caryn, dinner with the family, more laundry; is it bedtime yet?
Tomorrow we are off to the Cancer Institute in New Brunswick to see the Doctor and discuss the upcoming stem-cell transplant.  Wednesday we are seeing a new doctor, a psychiatric-oncologist, to help Sarah and the rest of us COPE with all things CANCER!!

That's it for now,
Maria

Disappointed, frustrated, scared, and powerless; that is how I feel tonight. Sarah had her MRI today, and in reality the news was really good, the tumors have shrunk 95%! So why do we all feel so defeated? I suppose it is because we all had such high hopes and expectations; we wanted 100%, we wanted to move on, we wanted our girl to be all better. I wish I could take all her pain away and have answers to all the whys and what ifs, but I don't. So now we regroup, take some deep breaths, get someone to help us to cope with the enormity of "cancer," and we keep fighting! However long it takes, there is no giving up.
Go team Sarah!

Today is the long awaited MRI to determine of the cancer is gone!
More later........

"A mother is only as happy as her saddest child" author unknown

Hi all, it has taken me a few days to regroup after the last hospital stay. To say last Thursday Sarah had a melt down is an understatement!! I am not sure if it was the steroids, having her (.) or a momentary glimpse of reality, but she hit bottom. She wanted to be "heard" , she wanted to leave the hospital, she wanted to be "normal", she wanted to put on a new dress, get her nails done, and go to the SHU formal, she wanted her old life back! Why have a meltdown now? Popular question. Treatment number 6 could very possibly be the last "regular" treatment, while this is a good thing, it is also very scary. The end of something, even something that you hate, can be just as stressful and frightening as the beginning, because the end of one thing means you have to move on and take the next step. In Sarah's case this means a stem cell transplant and a very long stay at the Cancer Institute of NJ. Cancer has become a reality and it is scary! I do not think Sarah has reached any level of acceptance yet, denial is a great defense mechanism, and when your defenses are down, even momentarily,
reality can be overwhelming. As far as we have come since January 6th, we still have far to go; and the future is full of fear, anxiety, uncertainty, and HOPE.
Today we finished college transfer applications,"just in case," a necessary precaution, even though Sarah is adamant about returning to Sacred Heart in the fall. I am trying hard to convince her to keep her options open, not an easy task, when she so desperately wants to return to all she has lost. Hard to believe it was 4 months ago today that Sarah arrived home for winter break, looking forward to the holidays, rest, and her head and stomach to stop hurting!
 As the saying goes, "you have come a long way baby!"

Oz

Welcome to the Land of Oz, aka, Overlook Hospital. It is Wednesday, so Dorothy is crying, "there's no place like home." The Wizard has said that we cannot leave Oz until tomorrow; he will send Glinda the good witch to release us after the morning blood tests come back. The Wicked Witch, me, is useless and not able to get anyone to understand Dorothy's wishes, therefore Dorothy is miserable! I wish she would realize that the Wizard is currently in charge of our journey down the "Yellow Brick Road to Recovery," and there will be many twists and turns along the way for him to navigate. Even the wicked witch would prefer to be home, with her comfortable bed, nice clean shower, and of course her rocking chair. Most people long for 'home' where they feel safe, loved, and comfortable, especially if they had to leave against their will. Home is where we can be ourselves, relax, let our guard down, and experience unconditional love and acceptance, so it is natural to want to be there, especially during stressful times. But my dear Dorothy, all in good time, you have to accept that the Wizard really does know best. Everyone here in Oz wants only the best for you; they are all using their powers to make you better, even the wicked witch, though you may not agree. So my pretty, it is time for you to decide what kind of woman you will become on this journey. The Wizard may be the one controlling the time line and the path you will take, but only you can control whether you chose to be happy or miserable. It is how we face life's struggles and road blocks that determines what kind of person each of us will become. When life is good, and
things are going your way, it is easy to be a kind, gracious, and loving person.  My darling Dorothy, how you handle the challenges life presents you with can have lasting effects on the person you will become; will you be sad, lonely, and miserable, or will you rise to the challenge and take control of your destiny. Choose strength, choose dignity, choose acceptance, choose bravery, choose love, and choose happiness. My hopes and prayers for you my dear are that you live a long, healthy, happy, productive life surrounded by people who love you and support you. Choose to become the best 'You' that you can be, filled with an inner sense of peace and happiness, then no matter where the road takes you, you will be 'home."
I love you my dear Dorothy, aka Sarah, more than you will ever know.
XO. Mom

One down.......

Good morning from Overlook Hospital. I just woke up and walked up 2 flights of stairs in my old baggy sweatpants and flip-flops, to buy coffee, a large coffee! Last night I 'slept' on the sofa, needless to say, my neck is very sore this morning. Yesterday, Zen brought Sarah to the hospital in the morning, and got her settled into room 309 and played the waiting game with her. I spent the morning playing catch up around the house! Last week was so crazy with appointments and holidays, that very little got accomplished at home. Me being me, I could not leave without out doing the laundry and organizing the clutter into a more manageable state. I also baked cookies for Greg, and cooked ravioli to bring to Sarah for dinner. Finally arrived at the hospital at 4pm, Zen and Sarah were enjoying a visit with Beth and the girls. Sarah was anxiously waiting for her chemo to begin. The Caregivers Lounge was hopping last night, but thank goodness there was one time slot still available for me to get my neck massaged, Pam worked wonders and I was able to get some relief. When I got back to the room, I heated up our dinner and Sarah and I ate, but still no chemo! It is so frustrating to just wait, when you have been ready for hours! We all know the sooner you start, the sooner you can leave, so we were not happy! We watched our shows, and the clock, and finally after one false start the chemo started to flow, at 10pm. I know there is a process, and many different components involved in the actual mixing and administration of chemotherapy, but waiting more than 5 hours after your body is alkalined is just plain unacceptable!!! So after a frustrating evening of waiting, machines beeping, and a few hours of restless sleep, day one is over! Sarah is finally getting some much needed rest; late morning seems to be the best time for uninterrupted sleep. Spoke too soon, JJ came into to see how Sarah is doing and now she is awake! Not too bad, it is 9:45am so she got some rest. Today is another day of waiting, the leucovorin starts 24 hours after the chemo, so not until 10pm tonight!
That is all for now, Maria

good morning

Love this, power to all the "bald" princesses of the world!

Too many ribbons, praying for a cure!

Happy

Happy Easter, Happy Passover.  Sorry I have been MIA since Tuesday, the days at home go by so quickly! This week we had appointments to keep, decisions to consider, and holidays to plan for; now it is Sunday night, Friday we had a wonderful Passover dinner with the Scannella's, spent Saturday afternoon in Connecticut celebrating Easter with family, and a relaxing Easter Sunday at home, ending with a family dinner. Tomorrow is back to the hospital for Sarah's sixth treatment, this one could be the last "regular" treatment, of course we won't know for sure until April 20th when she will have an MRI to determine if the Lymphomas are gone. If the Lymphomas are gone we move onto the consolidation phase, which takes place at the Cancer Institute, and involves more chemo and the stem cell transplant. If the MRI still shows evidence of the Lymphomas, there will be additional treatments before the consolidation. Either way Sarah is more than half way done, and looking forward to moving on to bigger, better, and happier times! Although there continues to be both good days and bad for all of us, I am so proud of Sarah for the strength and determination she has shown throughout this ordeal. I am looking forward to the day when I can announce that my daughter has finished all of her treatments and is a happy, healthy, cancer survivor!! In the mean time, please pray for not only a complete recovery for Sarah, but also for an end to this horrible disease once and for all! Love and happiness to you all, Maria

Good Morning

This morning I got up at 7 am, had coffee, checked e-mail, finished knitting project, updated Ravelry project page, and enjoyed some quiet time.  Then at 9:45 am it started........."he touched me, his hands are dirty, he touched the refrigerator, freezer, toaster, door, etc. all with dirty germy hands!!!!!"  "She squirted me with some kind of cleanser, she touched me, she is crazy/moody, my hands are clean!!!!"  No I am not babysitting, or dreaming, this craziness was coming from my 19 and 21 year old "adult" children!  I ignored them, and when that didn't work, I instituted the "silence if you want me to....????.... rule."  All is now quiet, one is at school, the other cleaning!  I am hiding in my office, planning an escape route if the chaos starts again.  In the mean time, some photos of the knitting that I recently finished.  M

shawl

cotton towels

"Crazy" Golf Club Cover

It is Sunday night again, where did this week go???? I received a really cute card this week that said, "Wouldn't it be nice if life were like a DVD and you could fast forward through the crummy parts." That certainly would be great, it seems as if just the opposite is happening around here these days.  Our days in the hospital go by so slowly, it seems as if time is just standing still, then we get home and start to unwind and before I even realize it three days have slipped by me!!!!  The laundry is almost done, and half the house is clean, but I still managed to finish another puzzle, knit, and sleep a lot!  Sarah is sleeping a lot too, the chemo really knocks her out, although she will never admit it.  We are looking forward to seeing family for Easter, and then on to treatment number 6 and another MRI.  Please keep us in your thoughts and prayers as we approach this important milestone.  Love to all, M