Happy July 4th!

July, hard to believe 2012 is almost half over!  
Last Saturday night we went to Chelsea's Graduation party,(down the street) it was a great party, so nice to see friends and catch up.  Seeing Greg and the boys together, all grown up and drinking beer brought back memories of them all as kids going to school and hanging out at each others houses.  Chelsea was 2 years old when we moved into this house, now she has graduated high school and is heading off to college; where has the time gone?  Sarah looked great, and was happy to be out of the house, visiting with friends.  Ever since the doctor said she should postpone going back to school until January, it is like a weight has been lifted.  No more pressure; she can take her time getting better and stronger with out worrying about keeping up with school work.  It is great to see her relaxed and enjoying herself again.  


I have been trying to focus more on myself, and my health these days.  All of the research I have been doing has convinced me that what you eat truly makes a difference in how you feel, and how much energy you have.  The old adage, "you are what you eat" has really hit home.  Unfortunately, my family is not so anxious to join me in changing their diets, and switching to healthier food choices.  My biggest objector is Greg; just the thought of healthier food sent him to the grocery store for corn-dogs, french fries, and Hot Pockets!  I hope he gets a good job with great medical benefits, he is going to need them!!


Yesterday,  Sarah and I went to Short Hills Mall with Zen to look at Mac laptops since my old Mac desktop is on its last leg.  My computer is running on an old operating system that is not capable of upgrading to the most recent software applications.   As always, the Apple store was crowded with customers, but we were still able to test out the options, and agree on a Mac Book Air.  Now it is up to Zen to go back and purchase it!  


After the Apple store, Sarah and I went to the Clinique counter at Nordstrom's, to see our friend/salesperson, Amy.  She was happy to see us, especially Sarah, we were treated to makeovers, and left looking and feeling great!


I have been meaning to tell you all about some of my favorite websites, have fun exploring!


ravelry.com --for knitting/crocheting
etsy.com-- for unique hand-made items
pinterest-- for everything
wellnessmama.com
crazysexylife.com--Kris Carr- amazing cancer survivor!
thewelldaily.com




Happy 4th of July
Maria :)

Home Sweet Air Conditioned Home

We had a great time in Saratoga, it was great to see my parents, sisters and some of the kids. We had fun making dinner together, catching up, and planning for our upcoming trip to the lake. Last night we brought in Thai food from our favorite restaurant, that was a treat for everyone! Although my parents home is air conditioned, their idea of cool is different than mine, I was hot and my dad was walking around with his polar fleece sweatshirt! Thank goodness when we got back to 97 degree NJ, Zen had the house nice and cool! When we left Saratoga, I once again fell for " you drive first mom, then I will drive". Silly me, I should have known when I pulled up to the gas pump and Greg just looked at me, seriously, he thought I was going to pump the gas! After completing that simple task, my darling boy proceeded to sleep until we reached NJ,(2hours). Sarah, who was wide awake for the entire trip, informed him that she was taking over the front seat from now on! I am glad we got away, it was a fun few days, and it did Sarah a world of good, she looks great! That's all for now, night all.

Summer is here.

Hi all, trying hard to stay cool, summer arrived in full force yesterday! Monday we went to Connecticut, and it was a beautiful day, not too hot and no humidity, just the way I like it. We saw my mom and dad along with my sister Donna and her family; it is always great to see them. Family, especially the little ones, are always great morale boosters. Tuesday I visited with my dear friend, Chris, our busy lives have not given us much time to get together, it was great to see her and catch up. Wednesday was a doctor day, Sarah saw Dr. M at Overlook Hospital, great news, her blood counts are all going up, we don't have to go back for 2 weeks! Now we need to fatten her up a little, and work on improving her mood; she is just starting to process and deal with the affects of her illness. She has been through so much, but my girl is a fighter, I know she will come out of this stronger than ever!! Today we had a great visit with Sarah's " little" sorority sister and her mom, looking forward to seeing them again soon. I am now sitting in my favorite chair with 2 fans blasting, along with the air conditioner, I hope tomorrow is a little cooler! Time to get back to my knitting, but first, I want to wish all of you a happy, healthy, and not too hot summer :)

Happy Father's Day

love you dad

finally gave them all away!

memories

daddy's girl

like father, like son

The Middle of June!

Is it really the middle of June??  Did we have a Spring?  Summer is here!
Wow, time is flying by, it was just Monday morning and I was sitting here at my computer, thinking about the week ahead, and now it is Saturday!  Let's catch up: Monday was a day of finishing up the laundry, cleaning, etc... Tuesday we went down to RWJ for Sarah's MRI and blood work, since it is an hour drive each way, that took up most of the day.  Wednesday morning I went to Quest Lab in Parsippany for my blood work, in preparation for my yearly physical which is next week.  I am finally catching up on my own doctor visits; last week I went to the dentist, which was long over due by several months, next week primary care doctor, next month mammogram.  Thursday Sarah and I both went to the eye doctor, I can not believe it has been over six months since my eye surgery!! My eyesight is almost 20/20, amazing!  Sarah had a great report too, no more swelling/bleeding of the optic nerve, thank goodness!  After getting good reports on our eyes, Sarah and I went out to lunch and then to Michael's for some craft supplies.  We found some great puzzles that we want to get for our trip to the lake, but decided to wait until we had a coupon!!!!!  Friday we went back down to RWJ to see the doctor, Sarah's blood counts have all improved, and the MRI showed that the tumors have shrunk and all that remains is some scar tissue, YEAH!!!!   Sarah is being weaned from the transplant team, next week she goes back to Dr. M at Overlook Hospital,  she doesn't need to go to RWJ until August for her next MRI, double YEAH!!!!!  Sarah's recovery is moving ahead; slow and steady, but right on track.  Keep up the good work my warrior girl!

Aside from doctors this week, I was able to finish knitting a shawl and a baby blanket, and start working on a doll!  Knitting is my escape; I love the creative process, and the satisfaction of a finished product.  When I am done blocking the shawl and blanket, and finished knitting the doll clothes, my new photographer, aka Sarah, will take photos for me to post.

Friday night was spent enjoying the beautiful evening with great friends :)
Pizza, wine, music, and special friends; who could ask for more!

Here's to many more happy summer days and nights.

Another Rainy Day

It is Monday morning, and I just realized my last post was on Wednesday, what the heck have I been doing?????  Sorted through medical bills, laundry, cleaned and organized pantry, shopping, mani/pedi, took Sarah to see friends go off to prom, out to dinner, scrap book with Sarah, knit, nap, watch the Devil's lose again, listen to Sarah complain when power went out for an hour, waited up for Greg to get home from work to remind him he has dentist on Monday, watched Mad Men, slept........And here we are, back to Monday, my life is so exciting!  This week we have more doctors, dentist, college visits, and who knows what else?  Time to go wake up Sarah and give her her meds, wake up Greg and get him out the door for dentist, find my calendar and make more coffee.  :)

Reality vs. Expectation

Good morning, at least so far, everyone else is still sleeping! Yesterday we made the trek down to see Sarah's doctor at the cancer institute, the first of what will be weekly post transplant check-ups. Arrived and found a parking space right out front,(unbelievable) checked in and waited about 15 minutes,(average) Sarah's vitals good, now for the doctor...... I think/know that Sarah expected to hear that she was DONE, better, finished, good to go, no more meds, do what you want, have a nice life, good bye! In reality we heard; you have been through hell, still recovering, keep taking meds,(you can take the disgusting liquid only once a day) No driving, No swimming,(this one was not taken well) No large crowds, blood work every week for a while, MRI in 2 weeks, keep resting, see you next week. The tears started back at no swimming! Went down to lab for blood work, the techs can't access port, Sarah did not want to wait for a nurse, so she told the tech to just use her arm, and to be careful! Done for the day, can't find Zen, he is off looking for quarters for the parking meter. Sarah is unhappy with just about everything, except the news that she can cut down on the disgusting liquid medicine. It is very difficult to think about the future, when you feel like your here and now is horrible and limited. I do understand, she is unhappy about all the things she is missing or has already missed, but hopefully she will realize that it doesn't have to be miserable, that she doesn't have to be miserable!! It's all about attitude at this point; choose to see the glass half full my dear daughter; yes some choices are out of your control, but not all of them. You can choose to be happy, choose to make the best of your time and energy, choose to show the stupid cancer that you beat it, choose to make your future bright and happy! As for me, I am choosing less stress, less chocolate, and more happiness. Bye for now, Maria ;)

Memorial Day. 5/28/12

Happy Memorial Day! Another relaxing day, with a little housework mixed in. Sarah has been sleeping a lot, and not really eating much; I think it is probably all the medicine she is taking. Tomorrow we go back down to New Brunswick to the Cancer Institute at RWJ to see the stem-cell transplant team. Sarah is really hoping that they will eliminate some of the meds. I just want to hear that she is doing well!! When we got home last week, Sarah received an acceptance letter to Montclair University; so now we have to visit both Montclair and College of St. Elizabeth, so she can compare them with Sacred Heart,and make a decision. I am so glad that she has choices, no matter what she decides. (although I do have an opinion, but I'll keep it to myself for now). Anyway right now I am just anxious for tomorrow and the doctors appointment. Happy to report that my dad is doing well at home, happy that mom is getting some help so she can get out with out worrying. The entire Marino Clan is looking forward to a happy, healthy summer and our family vacation at the lake. Maria :)

Happy 20th Birthday Sarah!!!!!!!!!!!!!!!!

May 23, 1992 at 3:24pm my beautiful baby girl arrived via c-section, after more than 24 hours of labor!! She shares her birthday with her cousin Nicole, twins, 8 years apart. This is also the day that Aunt Donna graduated from college. Today we are celebrating at the hospital, the nurses have been wonderful, they gave her balloons, 2 penguins and a cake! Greg ate most of the cake even though it wasn't chocolate. Sarah received lots of cards and well wishes. We decorated the room with her cards, it makes it so much more cheerful. Although Sarah is not at all happy about being back at RWJ for her birthday, she has a lot to celebrate. Cancer treatment done, stem-cell transplant done, no fever for almost 24 hours, blood counts good, today's cat scan, X-ray, MRI, and ultrasound all good!! One more special MRI tonight, if the results are good, hopefully all possible complications will have been ruled out and we will be able to go home, for good this time! Zen left tonight after dinner, and I am here to stay; Sarah and I are anxiously awaiting the season finale of American Idol, even though we each like a different contestant. All things considered, it has been a good day. Happy birthday Sarah, stay strong, be brave, keep fighting, you have many more birthdays in your future. Maria:)

We're Back........

Sleeping in my own bed again was great, in fact I slept so well that when Zen tried waking me at 6am, it took a minute for me to realize where I was! Why was he waking me so early? Sarah had a fever of 104.3, here we go again....... Called the hospital and doctor, they wanted to check her out, so off we went back to RWJ. Entering through emergency was not nearly as bad as we imagined. They checked us right in, put us in a sanitary room, accessed her port with ease, and did blood work and a chest x-ray in a very short amount of time. The ER doctor came in, followed shortly by oncology. Before we knew it we were back on the 4th floor in the BMTU; the good news is that the preliminary blood work was all good, Sarah's counts are sill going up, in fact her white blood count jumped from 6.9 to 16.8!! The infectious disease doctors came in and said all looked good, her fever went down below 100 and stayed down. The bad news, unfortunately once you go to the hospital, they want to watch you over night and wait for the 24 hour blood culture results. Since my back is still in knots, Sarah agreed to have Zen stay with her tonight, so Greg came to pick me up and bring Zen a few things from home. Greg and I headed home, with a quick stop to do some birthday shopping, and then out to dinner with the Scannella's, which was a nice treat since I really did not want to cook. Zen and Sarah napped, ordered pizza, and settled in for what hopefully be a one night hospital stay. Meanwhile, my dad is still in the hospital, so I am waiting to hear what is going on there. So, off to bed with high hopes that Monday will bring only good news. Maria

RWJ. Day17---------Day +10

We have been in this room for 17 days, I think we are both going a little crazy! Sarah was up at 7:30am, she was anxious to see the doctors, it was a long wait since they don't do rounds until about 10am. In the mean time, our favorite nurse told me a secret, Sarah's white blood count jumped from 0.4 to 2.0, this is great news! When the doctors did come around they were pleased to hear that Sarah was much more alert and eating. They took her off all but one IV antibiotic, and cut back on some of the meds she takes orally; they indicated that if she remained fever free throughout the night, and he blood counts continued to rise, we would go home this weekend! Of course Sarah has decided that means tomorrow, as early as possible! Although she would have loved for them to release her today, with some coaxing she realized that they have to monitor her for another night. In the meantime, the nurse practitioner wrote out all of the prescriptions for the meds Sarah will have to take at home for the next month and the case worker sent them all downstairs to the on site Walgreen's pharmacy. Within 30 minutes they had all the prescriptions approved, packaged, and ready for pick-up; couldn't have been any more convenient. Later this afternoon, the nurse practitioner went over all the meds with me, and answered some of our questions relating to Sarah's care at home. After a nap, Sarah worked with the physical therapist on some strengthening exercises. I must admit that for someone who had received some long awaited good news, my darling daughter was rather crabby this afternoon; apparently she had a bad headache, but was afraid to say anything in case it would delay her release. Fortunately she finally told nurse Nancy, took a pill and a nap, and woke up a much happier young lady. We had dinner, got ready for bed, watched the Yankee game, and now we are ready to get some sleep and dream about tomorrow and home! My last night on a small, hard sofa bed, yeah!!!!!!!!! Sweet dreams, Maria

Picc Line

What is a PICC Line and Why Do I Need It?   A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice. A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices. Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement. The entire procedure is done in the patient's room decreasing discomfort, transportation, and loss of nursing care. A PICC line may requested for a variety of treatment options which include some of the following: -Prolonged IV antibiotic treatment; -IV access obtainable by less invasive and longer lasting methods; -Multiple accesses obtainable with one access line; -TPN Nutrition; -Chemotherapy;; -IV access related to physiological factors; and -Home or sub-acute discharge for extended treatment. PICCs are frequently used to obtain central venous access for patients in acute care, home care and skilled nursing care. Since complication risks are less with PICC lines, it is preferred over other forms of central venous catheters. A PICC is not appropriate for all patients. Proper selection to determine the appropriateness of this device is required. The PICC may have single or multiple lumen's. This depends on how many intravenous therapies are needed. A PICC line can be used for antibiotics, pain medicine, chemotherapy, nutrition, or for the drawing of blood samples. PICCs can be inserted by radiologists, physician assistants or certified registered nurses. They are inserted using ultrasound technology at the bedside or ultrasound wit fluoroscopy. Chest radiographs are also used to confirm placement of the PICC tip if it was not inserted using fluoroscopy.

RWJ. Day 12

Reinfusion Day 5. Happy Mother's Day! After a long night, we woke this morning to a visit from the doctors. Sarah is still running a temp. In fact it was up over 104 today, so she is on antibiotics for a possible infection. She also got her first nupagen shot today, so hopefully those white counts will start rising. After sleeping for most of the day, Sarah woke up this afternoon to say "Happy Mother's Day". Zen got here about 2pm, today was graduation day for Rutgers University, apparently 50,000 people attended, making getting here a little tricky! Greg came after work with Caryn, which was a nice surprise. My family gave me beautiful "Alex and Ani" bracelets, which are supposed to be infused with positive energy, hey, I'll take whatever help I can! We had a nice afternoon/evening; no upsets, no drama, it was great, the bracelets must be working. Sarah got to Skype with grandma and the Elbadawi cousins, which was also a welcome treat. It is now 8pm, we are watching a movie, and she is almost asleep, hopefully tonight she will be able to sleep. Love to all, Maria

RWJ. Day 11

Reinfusion Day 4. It was a quiet Saturday, Sarah slept most of the day, she is pretty wiped out. I read a lot, walked a lot, and prayed for her to feel better soon. Zen came and brought me Falafal from Bosphorus, yummy! Late in the afternoon Sarah woke up and we watched movies; "Knocked Up", "He's Just Not That Into You", and now we are watching "It's Complicated". Sarah's white blood cells have continued to drop, unfortunately she is now running a temperature of 100.8, which means more blood tests and a chest X-ray, she is not happy about either one. I am pretty much at my wits end, she yells at the nurses and aids, does not want any more tests, just wants to give up, which certainly can't be helping. Tomorrow the nupagen shots start, hopefully we are turning a corner, she needs to believe that she is getting better and that she has a bright future. It is so hard for her to get past what she feels she is missing out on now, instead of focusing on what she will have in the future. Sarah you do have a bright, beautiful future ahead of you, please keep fighting! So many people love you and are rooting for you; you will get past this! Please let the doctors and nurses do their jobs, and you will get better. This is the hardest thing that dad and I have ever been through too, it is every parents nightmare to have to see their child suffering, but we love you and we can't wait until you are better. This emotional roller coaster is overwhelming, my heart breaks every time I see my child in pain. So dear family and friends, say a prayer for us, and then go hug, or call your children and tell them you love them. Happy Mothers Day to all, Love Maria

RWJ. Day 5

Sunday is a lazy day, even in the hospital! Sarah woke up not feeling well, the only things she can keep down are pretzels and Pepsi. We watched 2 movies so far today, "Footloose" ( the new version is no where near as good as the original), and our all time favorite movie "Music and Lyrics". Zen came to see us, and brought more supplies from home, then Greg made a surprise appearance after work. It was great to see them, we miss our boys very much, Sarah was exhausted after they left and slept for over an hour. I am tired too, doing nothing is exhausting! I have been trying to knit, but my heart just isn't in it, I am just not inspired right now. This is actually the second time I am trying to write this post, once again I tried to make corrections, and it disappeared, I never learn! Anyway, I am feeling blue today, seeing my baby in pain is literally breaking my heart. Sarah reads my blog, and doesn't like me to get too "mushy" so let me just say that for me, as a mother, this is a nightmare. PLEASE, God if you are out there and listening, make my baby get well quickly; she is young, bright and beautiful, and she has a lot of living still to do! We are counting down the days until Sarah's 20th birthday, 17 to be exact, all she wants is to be at home, and to be healthy and "normal" again, oh and let us not forget, she wants a car! That's my girl, wish big sweetheart. This horrible cancer is like a thief, robbing my daughter of her health, youth and innocence; she is the bravest person I know. Keep fighting Sarah, I know you can beat this; there is a beautiful future waiting for you. Sarah has always risen to a challenge, I am confident that she will find something positive in this horrible experience, and make the world a better place.  Together we will get through this, one day, one hour, one minute at a time. Thanks for listening, maria

RWJ. Day 3

Hi all, We made it through day 3! The last chemo just finished, Hooray!!!! I am beginning to think that my daughter has a split personality; "night-time Sarah" is a nightmare, while "day-time Sarah" is as good as gold and as sweet as honey! Last night I thought we would have to call in the "exorcist" so I was a little wary this morning when we finally woke up, but I was pleasantly surprised when my daughter greeted me with a smile and a cheerful "hallo mum," (she is back to the British accent, which is a good sign that she is in a good mood.) Sarah was able to be disconnected from her IV for several hours this morning, she showered, we put fresh sheets on her bed, we walked around the unit for some exercise, and then we colored, all-in-all a very productive morning! After a short nap, daddy arrived with a buttered bagel and chips, two of Sarah's favorite foods! After lunch, Zen worked some techno magic, and now Sarah can watch the Devil's and the Yankees on her computer, another problem fixed! We spoke to the "Team" of doctors and nurses, and they all agree that Sarah is doing well and tolerating the chemo with minimal side effects. They have adjusted some of her medications, so we are hopeful that her headaches will subside, and her moods will stabilize, can't ask for much more at this point. This weekend we are in a sort of holding pattern while the chemo works it's magic and kills off the white blood cells, and then works its way out of Sarah's system. According to the "formula" she will be good to go for the stem-cell recovery transfusion on Tuesday, and then we wait for her white cells to multiply and her counts to get to an acceptable level for her to be able to go home! But I am getting ahead of myself, back to one day at a time, and today has been a good one; Sarah got mail today, skyped with cousins, had several phone calls, and a bazillion Facebook messages, oh and we played draw something on our phones, which is not so easy to do, at least for me. So dear family and friends, today we will leave you on a good note, with positive thoughts and well-wishes. Love, Maria

RWJ. Day 1

Day one at RWJ. Arrived about 9:30am, there was a ridiculous amount of traffic on the turnpike this morning, and when we arrived the parking lot was already full and the line up for valet parking was down the street!! This is a very busy hospital. Then of course there was a room full of people waiting to be admitted, but our turn came quickly and before we knew it, we were settling into room 419. We met the nurses, answered the usual questions, Sarah had blood drawn and fluids started, then we met her team of doctors. Everyone has been very nice and understanding, they explained the protocol and layed it all out on a calendar, so we all know what is happening and when. It is scary, overwhelming, and a little surreal, we have been working towards this "final" step since the beginning of Sarah's treatment; now it is here and we are praying for a speedy recovery! The food here is actually pretty good, we have had lunch and dinner, so far so good. Sarah gets a menu and places an order directly to the kitchen, so the food is delivered hot within an hour, this is a great feature, she gets what she wants, when she wants it, no more trays of cold food lying around. The chemo part of this regiment is run over 3 days, for about 3 hours the first day, and then about 1 hour on the next 2 days. Sarah is already half-way through today's dose! After the 3 days of chemo, there are 3 "rest" days, and then the transfusion of her own white blood cells, and then we wait for her counts to go up. There was one mini blow-up today, the enormity of what is happening became a little to real, but all is calm now. Sarah is already snuggled into her bed, anxiously awaiting 2 hours of American Idol! Oh goody, I think I will start a new knitting project. It is going to be a long haul, so cards, e-mails, and prayers are welcome! Love to all, Maria P.S. sorry for any errors, every time I try to correct on the iPad, I lose everything!

On the road again....

Greetings all,
Had a great weekend with mom and dad, was sorry to see them leave today!
Spent the day catching up on laundry, packing, and sorting through medical bills.
Tomorrow we are off on the second part of our journey; Sarah will be at Robert Wood Johnson Memorial Hospital for approximately 3 weeks, getting her "final" chemo treatment and then the stem-cell transplant.
I am anxious, scared, excited, and hopeful for what is coming next; looking forward to hearing that my girl is cancer free!  Off to watch NCIS, and enjoy sleeping in my bed for one more night, not really looking forward to the dreaded recliner!
I will keep you all posted on Sarah's progress, please keep us in your thoughts and prayers.
Maria

in honor of my super sarah
super penguin
from J. Goode designs

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