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 :)

There's no place like home.........

Sarah was released from the hospital yesterday morning!!!!! After a visit from the doctors, Sarah was once again told she could go home, none of the tests showed any kind of infection or problem that needed her to remain in the hospital.  We arrived home in the afternoon, unpacked, and just relaxed and enjoyed being HOME.  Today, Sarah slept a lot, the medicine she is still taking makes her very drowsy.  She ate some dinner, and is now looking forward to watching the Devil's play the Ranger's on her very own TV!
I rested today , and finished reading the Fifty Shades trilogy, I have to say I really do not understand all the hype.  It is 2012, I would like to believe that young women today have more choices and self-respect than to submit to a handsome man, let alone the first one they date!! (Got that daughter of mine)  Anyway, it is great to be home, I think my knitting mojo is back, the creative juices are flowing, can't wait to find the perfect pattern and get started!
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:)

Sick and Tired

Today is day +14, Sarah has been back in the hospital since Sunday with a fever. Zen is staying with her because I am still not feeling well. I went to the doctor today; she said I must have a virus, along with being exhausted! It is not easy being away from Sarah, but I don't want to risk giving her my bug. Greg has been taking good care of me, and Sarah is in her father's capable hands. The good news is that all of the blood tests the doctors have done on Sarah are negative and her counts are still going up. The bad news is that she is still getting fevers, and the doctors do not want to discharge her until she is fever free for at least 24 hours. To say she is not happy is an understatement, especially since tomorrow is her birthday! My baby is turning 20, where has the time gone? The past few months have been quite a roller coaster ride, we are all ready for the ride to end so we can move on to better times. I am tired of excitement and uncertainty; I am so ready for boring old peace and quiet! Unfortunately, it appears that we will be on this ride for awhile longer, but it will end eventually. Stay strong Sarah; we will celebrate your birthday and your life tomorrow, and for years to come! Don't stop fighting, you are the strongest person I know!

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

Home Sweet Home

Out at last, and what a beautiful day, my girl is coming home! Unfortunately, I found out that my dad had gone into the hospital on Friday night, and was having tests done on Saturday. The Parkinson's disease is really taking a toll on him, and my mom who has to take care of him. Arrived home about 2:30pm, Sarah had a snack and then stretched out on her bed to catch up on her favorite TV shows. Meanwhile, I unpacked all our things, got organized, gave the bathroom a good once over with disinfectant, and then I too flopped on my bed and watched some TV. Before we knew it, it was time for dinner, it was nice to see Sarah actually eat, and it was extra nice because we were all together! Greg entertained us by wearing a hospital mask, and blowing up the plastic gloves as if they were balloons. After dinner Sarah talked to friends and family, and then off to bed. Unfortunately she ended up with a fever, so we had to dig out the Tylenol and hope it goes down by morning. Keep your fingers crossed. Maria

RWJ. Day 18--------------------Day +11

White count 6.9!!!!! We are outta here, see you on the outside. Maria and Sarah

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

RWJ. Day 16-------------Day +9

After 3 horrific days I think we have finally turned the corner. I also want to say that oncology nurses truly are angels, to care for people who are so sick that they want to give up takes a very special kind of person. We have been blessed with several of these kind, caring, compassionate angels in the past couple of weeks. To say that Sarah has been to hell and back is an understatement, when the doctors said she would hit rock bottom, they meant it. It has been very difficult for me to accompany my daughter on this journey, watching your child suffer is it's own kind of hell. We did have a much better day today, and hopefully that will continue to be the case. Some long anticipated positives were realized today: 1-no fever all day! 2-needle was removed from port, and not reaccessed. 3-Sarah was "unhooked" and able to shower and rest for a few hours. 4-started weaning off some meds, and now taking almost all meds orally instead of through IV. 5- Sarah was finally able to eat today, Daddy brought Wendy's, and she was very happy, so no more IV nutrition. 6-best of all, white blood count started going up!!! Platelets and red blood counts continuing to rise!!! Sarah is still singing her, "I want to go home NOW" song, patience is the one thing they don't have a pill for here. Tomorrow we have to work on getting her out of bed and walking and we will be closer to our goal of getting out of the hospital! Keep up the good work honey, you are almost done! Night all, Maria

RWJ. Day 15--------Day +8

Hi all, Last night was a long one, basically no sleep. Sarah was so unsteady and restless, she kept getting up thinking she had to pee, I could not sleep because I was afraid if I did she might get up and fall. Today was not much better, woke with a temp of 104.8, plus she was really confused; she thought we were in Florida on vacation and she couldn't leave the hotel. She kept asking me when we were going to Disney Land! Not sure if I should laugh or cry. I just hope tomorrow brings clarity, good blood counts, no fever, and an end in sight! Have to sleep now, hopefully. Night, 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 14 ( for real this time)

Hi all, well I guess the days are all starting to run together, yesterday was really day 13, but as we have established there is no correcting with the iPad!! It is also Reinfusion Day +7. Sarah was uncomfortable last night with the new IV lines, we were up a lot. She woke this morning running a temp of 103, alternating between freezing and sweating. All her counts, white cells, red cells and platelets are all very low, she needs transfusions. It took until 3:30 pm to get her temp under 100, she slept most of the day thank goodness, when she is awake, she is miserable! The nurse started the platelet transfusion at 4 pm, when that is done she will get a blood transfusion. In the mean time, she is still getting nutrition via the port, and loads of antibiotics in one of the other lines. She gets so many different things, I don't know how the nurses keep it all straight, especially since I can't even remember what day it is. Zen came to check on us and bring the clean laundry and of course Sarah's mail. We sent him home with another huge load of dirty clothes and blankets, I think we will stick to hospital bedding until Sarah's counts start rising. That's all for now, more later, unless I fall asleep. Maria

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 10

Reinfusion Day 3 Today was another rough day, Sarah is so unhappy, to her it seems like the end is no where in site. I keep reminding her of all she has to look forward to, but right now she can't see beyond these 4 walls and how crappy she feels! The doctors have been trying to control her symptoms with different pain medications, it has taken a couple of days to figure out what combination works best. Hopefully after the nupagen shots start on Sunday she will start to feel better. This hospital is huge, I have been walking from one end to the other, several times a day for some exercise, and some sanity. Right now it is 8:30pm on Friday night; Sarah is sleeping, and I am exhausted, so I think it is time to get ready for bed and read until I fall asleep. Bye for now, maria

Still Day 9. Reinfusion Day 2

First of all, Sarah has neutropenia, low white blood count, not sure where I came up with that other word? But I did finally learn my lesson, can't go back and make corrections on the iPad. Sarah was so miserable this morning between the headache, nausea, and itching that the Doctor ordered morphine! She slept for a while, when she woke up she needed Benadryl for the itching, now she is sleeping again. In between naps, Sarah received a mood boosting phone call from College of Saint Elizabeth, she got accepted! This is great news, now she has choices, which is what I was hoping for. I am resting a lot today too, guess everything is starting to catch up with me as well; started reading Fifty Shades, not sure what all the fuss is about, but I just started reading. That's all for now. M

RWJ. Day 9

Good morning, minus the good, Sarah feeling even worse today, she is hurting, angry, and wants to go home! It is going to take a lot of bad coffee to get through this one! Her white blood counts are very low, making her (nupagenic)very susceptible to infection, her platelets and red blood count are still okay so no transfusions today. She fell back asleep, so I am off to fortify myself with coffee before the next storm. More later, Maria

RWJ. Days 8 & 9

Yesterday, Reinfusion Day 1: long day, Sarah felt lousy, sore throat, headache, itchy rash, nausea,vomiting, diarrhea; all side effects of chemo and low white cell count, making her cranky and miserable. On top of all that, port had to be re-accessed! When the old needle was removed, Sarah was able to shower, walk around the unit, and relax with out any IV tubes hanging off her; but when it was time to access the port again and hook her up, she was sad and it was painful. No fun watching your child in pain and unhappy! She tried so hard to eat some dinner, then she used the new mouthwash that is supposed to numb her throat and make her feel better, no such luck, bye bye dinner. We were able to stay awake for American Idol, but we both crashed as soon as it was over. Hang in there honey, unfortunately you will feel worse before you feel better; but you will feel better soon!!!

RWJ. Day7. Stemcell Reinfusion Day 0

Sarah woke today not feeling well after her night of IV nutrition; so meds for headache, meds for nausea, and back to sleep until 9:30am. At 10am the Stem cell premeds were started, at 10:45 a blood bank doctor, a lab technician, and Sarah's nurse came in with a very large canister containing liquid nitrogen and Sarah's stem cells, and another cart with a warming bath on it. The cells were defrosted right in the room and then the bag was hung! Sarah had a lot of cells collected, which is great, it took about 1 hour for the 2 bags to run through Sarah's IV/port; other than increasing the nausea and one bout of vomiting, the Reinfusion was uneventful. Hooray, hooray, hooray, another milestone in Sarah's road to recovery. After the infusion, Sarah slept a lot, Zen and I went for a walk, ate lunch, and still Sarah slept. Greg arrived with some beautiful artwork from the Moxham cousins, and entertained us for awhile; after the boys left Sarah was sad that they got to go home and she didn't; soon honey, soon. On the Reinfusion timeline we are at day 0, by day 10 Sarah's white blood count should be back up to a level that will be safe for her to go home; but we will have to wait and take it day by day. I still have trouble believing all that has transpired in the last few months; Sarah has been through so much in such a short amount of time, I keep telling her to keep her eyes on the finish line, we are almost there! At 19 it is hard to keep missing out on things, but thanks to all of the wonderful doctors and nurses at Overlook and here at RWJ, Sarah has a whole new life ahead of her. Hang in there baby girl, we love you! Maria

RWJ. Day 6

Today was a quiet one, Sarah still not feeling well, not able to eat, sleeping a lot. I drank too much bad coffee, went for 2 walks, found kiosk that sells smoothies, had mango which was yummy. Zen came with good coffee and mail, I am now still awake at 11:30pm worrying about the ever growing pile of medical bills! Nurse will be coming back any minute to start an IV nutritional supplement since Sarah can't eat. Tomorrow is the big day, Sarah gets her "rescue" transfusion of her own white blood cells. Everything so far has happened right on schedule, we are moving along anxiously awaiting the day we can bring our girl home! Have to try and sleep now. 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 4

Greetings from the BMTU, bone marrow transplant unit, there are initials for all most everything around here. We made it through day 4! We slept pretty well last night, Sarah woke up about 5 with a headache, but after getting some oxycodone, she was back to sleep in no time. The doctor came in at 6am and he had a hard time waking her up! We both were still tired and proceeded to sleep until 9:30. We had breakfast, took showers, went for a walk, today we made 3 loops around the nurses station, and by then Sarah was ready for a nap! I went for my daily walk around the lobby, where I stopped in the Walgreen's pharmacy for mouth wash and vitamins, I have to keep myself healthy! Sarah was awake when I got back, waiting to tell me about an unwanted visitor; Murphy, as in whatever can go wrong ........,struck again and brought her (.) with him, not what you want when your blood counts are dropping, and risk of excessive bleeding is high. This meant that Sarah had to have a hormone shot to help control things, she was thrilled about that!! The afternoon brought 2 more visitors, Caryn and Michele, and we were very happy to see them, especially since they brought Sarah bagels and me a much needed Starbucks coffee! Later in the evening we relaxed and watched one of our favorite movies, "Because I Said So", and now Sarah is sleeping and soon I will be too! Tomorrow is another day, Sarah wants me to do her nails! I can't wait for my girl to feel better! Night all, 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 2

After surviving a very rough first night, we made it to day 2! Sarah slept a lot today, probably because she got so little last night. My sofa sleeper was actually pretty comfortable, so once things calmed down around here, I actually got some sleep. I am supposed to shower down the hall in the family lounge rest room, so I gathered my belongings and went down the hall; YUCK! I complained and the very nice housekeeper cloroxed the living daylights out of that bathroom for me; much better! They are so worried about germs here, I can't imagine that me showering in the room is exposing Sarah to more germs than the ones I bring back from down the hall. Oh well, I am working on that one. My next complaint has to do with the coffee, it stinks, I may have to switch to tea! Sarah was visited by several doctors today, so far she seems to be tolerating the chemo. She has already completed today's chemo, had a chest X-ray, and is now she is having a break down because the devil's game is not televised here. The moods change like the wind these days. I say buy the sports package on your computer, she says, "well I really want a car!" Greg is on Skype in the background yelling "it is only $5", I am booking the next flight to a deserted island, (one with coffee and a clean Bathroom)!!!!!!!!! Zen just signed her up to watch on computer, Greg is talking her through the log in, American Idol is on the T.V, we may salvage the night after all. Nothing is easy these days, even the simplest things seem overwhelming. On a brighter note, Zen printed out some great penguin pictures to hang up in here to liven things up! The nurses disconnected Sarah's IV to give her a little break, unfortunately she is too upset about missing the devils game to enjoy it. Things are starting to get crazy, bye for now, here's to hoping day 3 is better then 1 and 2! 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