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.
:)
Showing posts with label happiness. Show all posts
Showing posts with label happiness. Show all posts
Friday, July 27, 2012
Saturday, July 7, 2012
+60
Today is a special day, "Happy Birthday" to my sister Chris; it is also "Happy Day +60" for Sarah! Two months and counting since Sarah's stem-cell transplant. Yesterday's doctor appointment went very well; all Sarah's blood counts are still on the rise, and right where they should be, she is down to only 2 medications/day which is fantastic. A call to RWJ and the transplant team resulted in the great news; swimming in a well chlorinated pool is now okay, HOORAY!!!!!! Sarah is getting stronger everyday, seeing her smile again is priceless!! Today we need to shop for a new bathing suit, my beautiful girl is so slim and trim that all her old ones fall off! I on the other hand do not have that problem, cover-ups are what I will be looking for!
In other news, I went to a new dermatologist for my itchy skin rash, no definitive diagnosis, probably related to a combination of stress and heat. Hard to believe, with the fun-filled, carefree life I lead. At least I got a prescription for a steroid spray that dulls the itchiness.
The "Lake" emails have started, next weekend we begin our Marino Family week in Brant Lake, NY.
The entire clan gets together for one week of swimming, boating and eating! It takes numerous emails and lists to coordinate who brings what, in terms of food, drinks, snacks, etc. Every year we swear that we will be better organized and bring less, yet at the end of the week we are overwhelmed by the quantity of leftovers. We have all sworn that this year will be different, but somehow I think we are kidding ourselves. Food plays a very important role in this vacation, we are Italian after all! The annual ritual of making homemade pasta with grandma and grandpa has become a highlight of the week for all 16 grandkids.
Looking forward to my week the the sisters, it always proves to be lots of fun, and provides us with stories that are told over and over again. More on that later, time to finish my "lake shopping List" before the next email!
M :)
In other news, I went to a new dermatologist for my itchy skin rash, no definitive diagnosis, probably related to a combination of stress and heat. Hard to believe, with the fun-filled, carefree life I lead. At least I got a prescription for a steroid spray that dulls the itchiness.
The "Lake" emails have started, next weekend we begin our Marino Family week in Brant Lake, NY.
The entire clan gets together for one week of swimming, boating and eating! It takes numerous emails and lists to coordinate who brings what, in terms of food, drinks, snacks, etc. Every year we swear that we will be better organized and bring less, yet at the end of the week we are overwhelmed by the quantity of leftovers. We have all sworn that this year will be different, but somehow I think we are kidding ourselves. Food plays a very important role in this vacation, we are Italian after all! The annual ritual of making homemade pasta with grandma and grandpa has become a highlight of the week for all 16 grandkids.
Looking forward to my week the the sisters, it always proves to be lots of fun, and provides us with stories that are told over and over again. More on that later, time to finish my "lake shopping List" before the next email!
M :)
Wednesday, July 4, 2012
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 :)
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 :)
Thursday, June 21, 2012
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 :)
Saturday, June 16, 2012
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.
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.
Monday, June 11, 2012
Back from the Edge!
Hi all, I'm back from the edge!
I have been feeling so down, blue, discouraged, unhappy, and over stressed the past few days, I wanted a break from reality. Problem is, there is no way to escape from the problems in your life, they always seem to be hovering close by. Facing the bad and looking for solutions is the only way to keep going and to move on. I am really struggling with the havoc that cancer has brought to my family; I feel trapped by its far reaching powers. Sarah is still dealing with the physical and emotional side effects of her illness; she just wants to be done, she wants her old life back. Problem is realizing and accepting that the "old normal" is gone, and acknowledging that a "new normal" needs to be created. Change is never easy, especially when you feel that it is being forced down your throat; it is also not easy to be the one doing the "forcing." I hope that Sarah can come to terms with, and embrace the changes in her life. Right now, for many reasons, going back to Sacred Heart U is not a viable option, but Sarah has been offered some great alternatives, so she can resume her education and still be home. I hope she can accept this, and turn her disappointment into something positive. The future will be bright, and happy if she chooses for it to be!!! Attitude is everything :)
Aside from dealing with Sarah and her future, I have been dealing with the financial burden of cancer, and it is huge! The stem cell transplant phase of her treatment is literally hundreds of thousands of dollars. This was all pre-certified with the insurance company, by the hospital, so why are we still getting bills????
I spent several hours over many days searching on line for, and trying to decipher E.O.B's (explanation of benefits) from the insurance company; then I had to match these to the bills. If I did this all correctly, it was worth the time, according to the E.O.B's the hospital was paid the contracted rate, and we do not have to pay the difference. (Thank goodness, since we are still paying off phase one). I made copies of all the statements and today I will mail them, let the hospital and the insurance company battle it out!
I have spent the past 5 months, in and out of the hospital, with Sarah, not really giving much thought to what the house looked like; this past weekend I took a good look :( :( Apparently the boys did not give the house much thought either, forget dust bunnies, we had dust elephants!!!! They have all been put to rest; I cleaned like a mad woman yesterday, scrubbing, dusting and vacuuming almost the whole house!
Zen's office and Greg's room remain untouched, hopefully the boys will pick up on the cleanliness theme, and clean their caves!!!
With any luck the weather will cooperate and we will have some sunny days ahead, without the afternoon thunder and rain. Here's to brighter days!
Maria :)
I have been feeling so down, blue, discouraged, unhappy, and over stressed the past few days, I wanted a break from reality. Problem is, there is no way to escape from the problems in your life, they always seem to be hovering close by. Facing the bad and looking for solutions is the only way to keep going and to move on. I am really struggling with the havoc that cancer has brought to my family; I feel trapped by its far reaching powers. Sarah is still dealing with the physical and emotional side effects of her illness; she just wants to be done, she wants her old life back. Problem is realizing and accepting that the "old normal" is gone, and acknowledging that a "new normal" needs to be created. Change is never easy, especially when you feel that it is being forced down your throat; it is also not easy to be the one doing the "forcing." I hope that Sarah can come to terms with, and embrace the changes in her life. Right now, for many reasons, going back to Sacred Heart U is not a viable option, but Sarah has been offered some great alternatives, so she can resume her education and still be home. I hope she can accept this, and turn her disappointment into something positive. The future will be bright, and happy if she chooses for it to be!!! Attitude is everything :)
Aside from dealing with Sarah and her future, I have been dealing with the financial burden of cancer, and it is huge! The stem cell transplant phase of her treatment is literally hundreds of thousands of dollars. This was all pre-certified with the insurance company, by the hospital, so why are we still getting bills????
I spent several hours over many days searching on line for, and trying to decipher E.O.B's (explanation of benefits) from the insurance company; then I had to match these to the bills. If I did this all correctly, it was worth the time, according to the E.O.B's the hospital was paid the contracted rate, and we do not have to pay the difference. (Thank goodness, since we are still paying off phase one). I made copies of all the statements and today I will mail them, let the hospital and the insurance company battle it out!
I have spent the past 5 months, in and out of the hospital, with Sarah, not really giving much thought to what the house looked like; this past weekend I took a good look :( :( Apparently the boys did not give the house much thought either, forget dust bunnies, we had dust elephants!!!! They have all been put to rest; I cleaned like a mad woman yesterday, scrubbing, dusting and vacuuming almost the whole house!
Zen's office and Greg's room remain untouched, hopefully the boys will pick up on the cleanliness theme, and clean their caves!!!
With any luck the weather will cooperate and we will have some sunny days ahead, without the afternoon thunder and rain. Here's to brighter days!
Maria :)
Wednesday, June 6, 2012
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. :(
Monday, June 4, 2012
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. :)
Wednesday, May 30, 2012
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 ;)
Monday, May 28, 2012
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 :)
Wednesday, May 23, 2012
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:)
Sunday, May 20, 2012
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
Wednesday, May 16, 2012
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
Tuesday, May 15, 2012
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.
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Sunday, May 13, 2012
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
Sunday, May 6, 2012
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
Friday, May 4, 2012
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
Saturday, April 28, 2012
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.

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.
Labels:
cancer,
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daughter,
family,
happiness,
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love,
lymphoma,
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stem-cell transplant,
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young-adult
Tuesday, April 24, 2012
Good News
Today we made the trek down to Robert Wood Johnson Memorial Hospital/The Cancer Institute of NJ to meet with Dr. S and his team to plan for the consolidation phase of Sarah's treatment, aka, the Stem-cell transplant! It was an early day, had to leave the house by 7:30am to make it down to New Brunswick for our 9am appointment. The meeting went really well, once again we are blessed with a great medical team, they explained the procedure again, and assured Sarah that they would do everything in their power to make her approximately 3 week stay, as comfortable and painless as possible. They also explained that she must do her part, and be a good patient in order to have a favorable outcome. There is a light at the end of the tunnel!!! They all have high hopes that Sarah will have a complete remission and a full recovery; this was the news we have been hoping and praying for! Doctor S and his team have to review Sarah's MRI and other medical records, and by the end of the week we should know when the transplant will take place. On that happy note i will say good night, tomorrow is another day, and another Doctor.
Maria :)
Maria :)
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