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.

7/31/12

Hi everybody,
Sarah and I went to get our nails done on Saturday, we were relaxing and enjoying being pampered until "that girl" came in, you know the one, she thinks the entire world needs to hear about her life.  Needless to say, that was the end of peace and quiet! But, even with all of the disruption, our fingers and turquoise toes looked fabulous!  Sunday we went to a baby shower for my dear friend Chris's son and daughter-in-law; amazing how many things one tiny baby needs!  We had a great time, and enjoyed seeing all of the beautiful gifts.  When I arrived home Sunday afternoon, I learned that my dad was back in the hospital.  Apparently he has an infection that compounded the Parkinson's symptoms, so he needed to be admitted and receive IV antibiotics, the fun just never ends.  Monday we laid low at home, I am still trying to get over a bad case of laryngitis, which is difficult with all of the "coordination" phone calls between the sisters.  Today, Sarah had a doctors appointment, and tomorrow we leave for Saratoga to see my dad, and help my mom line up some help.  Sarah is hoping to see some cousins while there!!!!  I am hoping to get an hour to run to my favorite yarn shop, the stash is dwindling!  Hey, with all that is going on in my life, I need yarn to keep me going.

Baby Blanket for Shower

Race Cars for Baby

so true!

M :)

Back From the Dark Side!

Remember when you were a kid and your mom said, "if you don't have something nice to say, then don't say anything at all."  Well that is why I have been MIA for the past 2 weeks, nothing nice to say!
Only at the lake for a long weekend, the heat and the temptation of the lake were too much for Sarah to handle, so we left early.  I did have a good time while there, especially the annual pasta making and a mom and sisters boat ride around the lake.  Brought back memories of the summers spent at our lake house when we were kids, those were happy times.  Once we were home, there were issues relating to Sarah's health to be dealt with; and let me just say that the "aftermath" of dealing with cancer is almost as painful as the actual disease.  We were all in a pretty dark place these past 2 weeks, but we are getting help and beginning to deal, and heal emotionally.  We have only just begun, but I have to believe that we will emerge from the darkness stronger, happier, and hopefully closer than ever!  That is my wish and my prayer for my family; that we start working and healing together today, for a brighter tomorrow.
:)

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 :)

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.

Wednesday June 6

Greetings from my rocking chair, I am taking time out from disapointing my daughter to knit and watch TV. I am apparently also guilty of being to easy on my son, I can't win these days, someone is always unhappy. Yesterday Zen and I took Sarah down to RWJ for her weekly check-up. She had blood work done and then we met with one of the nurse practitioners; Sarah lost more weight, her counts went down a little, and she is neutropenic again. It seems every time we take 1 step forward, we take 2 steps back! Sarah is still taking a lot of medicine, the meds make her sleepy and nauseous, she doesn't eat much and that adds to the nausea; around and around we go. The nurse eliminated one medicine, and cut back on another, hopefully that will help; she also suggested that Sarah eat more protein, get some light exercise, and even spend a little time in the sun, hopefully she will listen. It seems like forever, but in actuality it has been only 29 days since the stem cell transplant, it takes an average of 100 days to recover, and up to six months to really get your strength back; I am sure Sarah will be fine, it is me I am not so sure about! I think I have reached my limit when it comes to stress and dealing with my families expectations. I think it is time for a family meeting! For now, back to knitting. :(

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:)

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. 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 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