Third Time is a Charm 2/27/12

Greetings from room 309. Today everything went very smoothly, which was a nice surprise! Don't get me wrong, there was still some waiting, but it was manageable. Sarah was hooked up to her IV before noon, and the chemo started by 5:30pm which is a lot earlier than the past 2 times. Alyssa came in during the day to give Sarah a massage, which was very much appreciated, and Dr. M came in to see us and let us know that he scheduled an MRI for this Wednesday. Hopefully we will get a report that the lymphomas are shrinking and the swelling is gone! If that is the case, Dr. M can start decreasing the amount of steroids that Sarah is taking, which will be very welcome news!! I thought I would change things up this visit and try sleeping on the cot again. I am already regretting that decision, the so-called mattress is about 2 inches thick and very saggy, I may not be able to stand up by morning! To top that off, I have diagnosed myself as having a sinus infection; headaches, teeth and eyes hurt, and nose is clogged. You might think that if I had to get sick, the hospital would be the place to be, but no, no medicine here for me, tomorrow morning I have to go see my new primary care doctor. Hopefully I will get better before anyone here notices how sick I am, and tries to throw me out of Sarah's room. Day 1 is coming to a close; we watched our shows, we knit, (Sarah is doing great!) we washed up, and now we are going to attempt to sleep. Night all, M

Sunday Night Blues 2/26/12

Greetings from the "Oscars" or should I say from watching the Oscars. I am so tired, I doubt I will make it to the grand finale. We made a quick trip to Saratoga Springs on Saturday to see mom and dad. Managed to squeeze in a trip downtown to my favorite yarn store, Common Thread, and then dinner at Sushi Thai Garden. Greg was at Quinnipiac for the QU vs. Yale hockey game, Zen, Sarah and I watched it on TV. It was a great game, too bad it ended in a tie. This morning after having grandma's special heart shaped waffles for breakfast, we had to say our goodbyes and head for home. When we arrived back home, Sarah had mail waiting for her, I had laundry waiting for me! Managed to squeeze in some time to help Zen finish puzzle number 3. Greg got home and we all had chinese food for dinner, a good way to end the weekend. Monday begins Sarah's 3rd round of chemo, tonight she has the Sunday night blues. We packed our bags, and now we are watching the Oscars and gearing up for our hospital stay. Not really something to get excited about, in fact Sarah is dreading it, but we have to go anyway. As unpleasant as it is to be cooped up in a hospital room for 4 days; all indications show that the treatments are working and the lymphomas are shrinking, so we will just have to suck it up and power through the week!! Sarah has to have another MRI this week, and I am crossing my fingers that we have more good news. That's all for now, goodnight all.
M

22 Years Ago Today.....

Happy Anniversary to Zen and Me !  22 years ago today, we said I do.
Today we took Sarah for her 3rd outpatient treatment, she was pretty crabby when we started out, (sorry Sarah) but her mood soon improved.  Dr. M said she did not need to get the Ara-C chemo next week, only Methotrexate, which is great news, since the Ara-C is the one that gave her the itchy eyes, fever, and made her lose her hair!!  So, next weeks hospital stay should be much better than the last one, barring any surprises!  Sarah got "blinged" today during her treatment, the Operation Bling Foundation provides a piece of costume jewelry to patients undergoing treatment for Cancer,  she chose a really pretty ring.  I did Sarah's nails with her new Sally Hanson Instant Manicure, it is peel and stick nail polish that you press on and shape with a nail file, very cool!  When her treatment was done, we met with our social worker friend, M, and S, the "wig" lady, Sarah was able to choose a wig supplied by the American Cancer Society, along with a hat and a head wrap.  Good news and lots of goodies, it was great to see Sarah Smile!!!!!  By 1pm we were on our way to lunch, Cheesecake Factory of course, then errands and home.
Sarah had another surprise waiting for her at home, a large envelope filled with notes and get well wishes from her sorority sisters, a perfect ending to the day.   Happy weekend everyone.
M

BLING

Manicure by mom

Thursday

Laundry, Cleaning, a few breaks to work on the latest puzzle.
We have Aunt Kathy to blame for getting us hooked on puzzles; we are all addicted, the kitchen table has been permanently taken over.  Since last weekend we have completed and framed 2 puzzles, each containing 1000 pieces, we are now working on one of Italy, only 750 pieces but it is the hardest one so far!! In the afternoon we had a great visit with our friends, Jackie and Chelsea, it was nice to catch up.
Before we knew it, it was dinner time and then off to bed!

Wednesday

2/22/12 Happy Birthday Zen!!!!!
A visit from Aunt Lisa, shopping for puzzles, and out to dinner!
It was so warm, Zen got to play golf for his birthday!
All in all a great day.

" Hair Today, Hat Tomorrow" 2/21/12

Over the past few days Sarah's hair started to fall out. I have been brushing it for her, and it seems like all at once handfuls are coming out. She has been amazingly accepting and brave about this latest development. Today we went with our friend, Caryn, to purchase a wig and some soft hats for Sarah. She picked out a really pretty wig, it looked very natural, just like her own hair. Even though I made her several hats, we still bought some soft, cotton & bamboo hats for her to wear. The women at the wig shop were wonderful, they were kind and supportive, which helped a lot. When we were done shopping, Sarah said she wanted to go see our friend, Lisa, who happens to also be our hairdresser. Sarah said it was time to cut off her hair, watching it come out everyday was to painful, so we called Lisa and she had us come right over. Thank goodness that Caryn was with us, Sarah was very brave, and Lisa did a great job, I of course fell apart! When I look at her, I have trouble believing that Sarah is sick, this made it real for me, which after everything she has been through seems ridiculous, but that's how I felt. She looked adorable when she was done, her head is so cute!!! She slipped on one of her new hats, and we headed for home. Sarah showed Zen and Greg her new look and told them all about her wig, which we will pick up on Friday. I am so proud of my girl, she was awesome today!!!!

The Long Weekend 2/17/12-2/19/12

Friday began with a 9am appointment with Dr. M at Overlook Hospital to check Sarah's white blood count, since it had been so low on Wednesday.  This time we were prepared with drinks, snacks and no mascara!  Sarah's eyes were finally feeling better, but she had been feverish on and off since Wednesday night.  Once her port was accessed, the blood was drawn, and then we had to wait for the platelet count.  Bad news, platelets low, Sarah needed a platelet transfusion.  Good news, white blood counts coming up! The blood count information was sent over to Robert Wood Johnson Memorial Hospital, (RWJ) since that is where the stem cells will be harvested for the future stem cell transplant.  The team at RWJ wanted us to get down to New Brunswick as soon as we were done at Overlook, so we ate lunch while Sarah was getting her transfusion, and by 1:30pm we were on our way. Thankfully Sarah slept for the hour long drive, because our day was far from being over.  Once we arrived, Sarah needed yet another blood test, and as luck would have it, it could not be done through her port.  After some hysterics and tears, the blood was drawn, and the waiting began; it would take about 1 & 1/2 hours to get the results that would tell us if the time was right for the stem cell harvest.  We waited, and waited, and finally by 4:15pm the results were in, Sarah's counts were great, unfortunately this meant that she had to have another special Shiley Catheter placed in her neck that night, so the harvesting could take place on Saturday.  More paperwork, more waiting, more tears!!  Dr. S came in and discussed the importance of  harvesting the stem cells while the count was so high, and then off we went to Nuclear medicine.  I was allowed to go into the sterile "special procedures" room with Sarah, I had to wear a mask and hat, that at least got a smile out of her!  I watched the whole procedure, held Sarah's hand, and did not faint.  After the catheter was placed in her neck, an x-ray was taken to make sure it was in the correct place, after a slight adjustment and another x-ray, we were good to go!!  By the time we got back to the prep area and Sarah got dressed and signed out, it was almost 7pm, what a long day!!!!  Greg, Uncle Brad , Clayton and dinner were waiting for us at home.  It was good to see Brad and Clayton who were spending the night at our house, on their way down to Maryland for a soccer tournament.  After dinner it was off to bed, since the next day Sarah had to be back in New Brunswick by 8:30 am.

Saturday we were up at 6:30am, I gave Sarah her last Neupogen shot, breakfast, and a bag of snacks, and she and Zen left for RWJ.  Sarah was upset that I did not go, but we were expecting more visitors that night, the laundry had taken over the house, and I am ashamed to say, I was just plain worn out from all the excitement of the week.  When they arrived at RWJ there was of course more paperwork, and more waiting, Sarah called me several times to let me know what I was missing!!  A large, noisy machine was hooked to the catheter in her neck; the blood was drawn out of one tube, separated into white blood cells, red blood cells and plasma.  The red blood cells and plasma went right back in through the second tube in the catheter, the white blood cells were collected so the stem cells could be counted.  This procedure went on for several hours, Sarah had to stay in the lounge chair hooked up to the machine until 1:30pm.  She ate, watched TV, talked to her Dad, and checked up on me.  When she was finally unhooked and released from the hospital, she was excited to head home to see Aunt Kathy, Uncle Sam, Sofi, Annie, and Sammy,  who had just arrived from Syracuse, NY.  Sammy's 3rd grade class had all made get-well cards for Sarah, we had fun reading them and looking at the fabulous art work!  At about 8pm we got the call we were waiting for; the Doctor called to tell us the good news, they had harvested more than enough stem cells, Sarah was done!!!!  Bad news, they wanted her back the next morning for a platelet transfusion and to remove the catheter.  Sooooooo.....

Sunday morning up at 7am, drive to New Brunswick, more paperwork, more waiting, another blood test! Zen, Sarah and I were all stretched out in lounge chairs, watching TV, while she received her platelet transfusion.  Then, you guessed it, a lot more waiting, more blood work and finally at 2pm the catheter was removed from Sarah's neck.  YEAH, finally we could get home to see the cousins and get ready to go out for dinner.  It has been a long, but very productive weekend, we are crossing our fingers that we will not see the inside of a hospital again until next Friday when Sarah gets another Rituxen treatment.
Time for dinner
M

"matching hats"

"happy"

"the vampire machine that 'sucked' Sarah's blood"

"Are we done yet?"

The very long catheter tube,  just removed.

Dinner!!

HAPPY HATS

"Happy Hats"

Inspired by Sarah

Made by Maria

Modeled by Poppy the Penguin

Here is the first batch of happy hats, ready to be wrapped and given to patients at the infusion center.

Sarah's 1st hat
penguin by Maria

Sarah's 2nd knit hat

Wednesday 2/15/12

First things first, Happy 21st Birthday Greg!!! I can not believe my baby boy is all grown up, even though you past me in height years ago, You will always be my little boy. Remember that even with all the craziness that has become our "normal" we love you and hold you close in our hearts. Our day began with breakfast and birthday wishes for Greg, he left for class and the rest of us left for Sarah's doctor appointment. We met with the social worker to discuss our week, and work on some relaxation techniques, so far so good. Then it was in to see Dr. M; he had to check Sarah's eyes, discuss the tentative plans for the next couple of weeks, and then she had a blood test to check her white bLood count. As expected her white blood count was low, so we need to watch for signs of fever and infection, and go back for another blood count check on Friday. Things were moving right along, sarah was anxiously awaiting lunch, just a few more minutes to check on prescriptions and we would be off. The best laid plans........ Sarah felt a little dizzy so the nurses quickly sat her down, got her a soda,(for some sugar) and a bag of chips, but unfortunately it was not enough and she passed out and slipped to the floor!! Nurses and doctors came running, the ER was called, her port was accessed again, fluids and oxygen started, a stretcher appeared and we were off to emergency! It all happened so fast, and yet it seemed like forever. Once in the ER Sarah's vital signs had to be checked, and then she was whisked off for a cat scan. The good news, they took her right away for the scan, bad news, we had to wait an hour for the results! In the mean time more blood was drawn, and more questions asked, Zen went to the cafe to get Sarah a grilled cheese sandwich, the poor kid was starving at this point! Dr. M came in about 4pm to tell us that the cat scan was good, in fact not only was Sarah good to go home, the scan showed that the lymphomas had shrunk considerably!!!! Yeah, a happy ending to a crappy day! All that was left to do, was be signed out by the ER doctor, we waited, and waited, checked with the nurse, waited some more, and finally I couldn't take it anymore, so I told the nurse we were leaving, and miraculously the discharge papers appeared! We left the house at 11:30am, and at 5pm we were finally on our way home! Once home we had a quick dinner, and sarah lay down for a rest. Sarah is a little feverish now, what a day! Here's hoping for a good nights sleep and a better tomorrow. Night all, M

Happy Valentine's Day

Hi all,
Well we could sure use some "HAPPY" today, last night was a rough one.  One of the side effects of the new chemo that Sarah had last week is irritated, dry, itchy eyes, naturally she had to deal with this side effect.   We were up almost all night because she was in so much pain; we tried drops, wet cloths, and benadryl, all to no avail.  Called the doctor's office at 11:30pm, the on-call doctor said try giving her more of the steroid medication, and come in at 9am, so we gave her more meds, and prayed for morning.   By the time we arrived at the cancer center this morning, Sarah was ready to rip her eyes out, poor kid!  The doctor checked her out, agreed that her eyes were in fact very irritated, and suggested we see the eye doctor, so off we went.  Arrived at the eye doctors office, (yes- the same one we were at yesterday) and all it took was one look for him to see that her eyes were extremely dry and irritated and in need of medication.  Armed with lubricating drops and a prescription we headed for home, three cheers and many thanks to Eye Care 20/20 for coming to our rescue again!!!  Sarah rested this afternoon, and thankfully the medication seems to be working, slowly but surely.  Chef Zen made a special Valentine's Day dinner that was thoroughly enjoyed and devoured by all!  Thanks to Michele, and Beth & Jamie for bringing over desserts, I for one can't wait to dig in.  Then it is early to bed, tomorrow is another busy day.  We have Sarah's scheduled blood-work appointment in the afternoon; this test will determine her white blood count.  Once her white blood count reaches a certain level we will have to go to New Brunswick to the Cancer Center of NJ for the stem-cell collection, another scary hurdle we can't wait to get past!!!!
Hopefully she will feel up to some retail therapy after her blood work,  Short Hills Mall is just a short distance from the hospital.  Tomorrow is also Greg's 21st birthday!!!! Where has the time gone?
Thanks to all the people who continue to send their good wishes, it helps more than you know.  Sarah has certainly touched a lot of people in her young life and we are very proud of her.  Special thanks to all of our wonderful friends and family, you are there to listen when we need to talk, and you understand when we can't. 
love and happiness to all,
m

Monday 2/113/12

Not much to report today, we had a quiet weekend, which I thought was great!  Today was the eye doctor for Greg and myself, he needs new glasses, I need new eyes.  Actually, I need to have some laser surgery to clear up the "fogginess" which only occurs in about 20% percent of people who have cataract surgery, Murphy's Law indicated that I would be in that 20%!!  Sarah's room looks great!!!!! Once the painters got past their artistic differences, the painting got finished and looks perfect.  We purchased new curtains today, and hopefully they will go up tomorrow, now if the smell would just go away, she could move back in.  Still busy knitting, giving shots, and doing laundry.  My model has not felt up to posing, hopefully tomorrow because I now have 12 hats done!  Not much else to report, pretty boring (thank goodness) around here the last few days.  Time for our show, Sarah is waiting. Night all,
m

Friday. 2/10/12

Waking up in my own bed felt great! Started the day with "beauty therapy" great to see Lisa and be pampered a little! Greg and Sarah went out for lunch, Zen finished painting, and I escaped reality for a while by getting out for lunch and errands with friends. It was nice to get dressed and wear something other than my slippers, which I have taken to wearing around the hospital, both day and night! When I got home, it was time to give the dreaded shots! My friend, Caryn, helped and even though I was a little nervous, I did it. Sarah was a trooper, we were both relieved when it was done! Went out to dinner as a family, which was a very welcome change of pace. Back home I admired Sarah's room, the color is beautiful, good work Zen and Greg. Then Zen and I caught up on our weekly TV shows, he was in charge of the remote and speeding past the commercials,while I finished hat number 10, and started number 11. It was a great day, and now I am exhausted and heading off to bed to finish catching up on sleep!! Tomorrow will definitely be picture day, so stay tuned. Night all, M

Midnight Madness. 2/9/12

Just when I was finally closing my eyes last night, or more precisely this morning, the night nurse came in to check Sarah's port in preparation for her last dose of chemo. She flushed the port and immediately felt there was a problem, not what you want to hear after midnight. Now this was the same nurse that had a problem with the port the last time we were in the hospital. I remarked that it had been fine all day, but she was confident that there was a problem. Needless to say, Sarah was wide awake now, and told the nurse that she seemed to be the only person in the hospital who didn't know how to use a port!! Before we knew it there were three nurses hovering over Sarah, trying to access the problem, commenting that perhaps the needle or port needed to be changed, Sarah freaked out!! At this point I was in the bed with her, trying to calm her down, remain calm myself, and listen to the nurses plan. The plan involved injecting blood thinner into the port, waiting for half an hour, and once again checking for blood return, low and behold it worked! By now it was 2:30am and time to start the chemo, we finally drifted off to sleep sometime after 3am. I was up before 7, but thankfully Sarah slept until after 8, she was awakened by the smell of her breakfast arriving, French toast again, the steroids make her ravenous. In discussing the evenings events with the day nurse, nurse B, (one of our favorites), she explained that what had happened was very common and not a big deal. Sometimes the little flap in the port gets clogged, and a little blood thinner clears it right up! That simple explanation sure would have come in handy earlier, it would have eased our nerves considerably. I made a point of discussing the experience with both the patient advocate and the nurse educator, it was unfair that a professionals uneasiness with a procedure led to a patient being so upset. They were wonderful, and promised it would not happen again. The day improved quickly when the art therapist arrived, Sarah really enjoys working with her, it is very relaxing. What an amazing program, I hope they get the funding needed to extend the grant for this great program. After lunch we could hear Dr. M talking in the hallway, we warned him that we only wanted good news, and surprise we got it, he was coming to tell us that Sarah could go home!!!!!
So, here we are, home sweet home; we checked on the progress being made in Sarah's room, not done but we love it so far, showered, ate, and now are settling down for what we hope will be a great nights sleep. Being home is the best medicine we could have asked for! Tomorrow the shots start, but for now sleep is the only thing we are thinking about.
Good night all,
M

Back Again. 2/8/12. 10pm

I'm back! I got back to the room at 6 pm, after my 15 minutes of relaxation, to find Sarah happily talking on the phone with her cousin Sofi. It was great to hear her laughing! I ate my sandwich, and was trying to figure something out on this iPad, when she called out to me, I looked up and blood was running out of her nose! After everything my poor baby has endured these last few weeks, I chose this moment to freak out. I called/yelled for the nurse, and she came running, she had to take care of Sarah's nose and my nerves!! Luckily both were under control in minutes. The rest of the evening was calm, we watched TV, chatted with the "painters" and relaxed. I finished hat number 9, and when I looked up this time, Sarah was fast asleep. I rejoiced too soon, the nurse came in with a pill for her to take, thank goodness she fell right back asleep, the poor kid is exhausted. These last few days have really taken a toll on us both. Fingers crossed, we will go home some time tomorrow. It will be great to sleep in our own beds again, it will be even greater to sleep without any interruptions. So here's hoping for a good morning blood test!! Night all, thanks for your continued love, support, and good wishes.
M

P.S. will post pictures when we get home.

Wednesday. 2/8/12

Greetings from room 309, where the fun never ends!! We tried to get some sleep last night, but there were a lot of interruptions. Every drug is administered according to a schedule, and a lot of the scheduled times are in the middle of the night, therefore, neither one of us gets much sleep. Sarah finally fell into a deep sleep around 6 am, so naturally the nurses had to wake her up by 7am to drink the contrast for the PET Scan. Transport was at the door at 7:30, and we were off to the 4th floor. We entered the prep room and the tech went to get Sarah's injection ready. The needle is secured in a metal box, the box in a radioactive proof metal cabinet, when he came back in, he told us that after the dye was injected into sarah's port, she would have to sit for 45 minutes and then she would have the 25 minute scan. Meanwhile, he told me I had to go to the waiting room, so I would not be exposed to the radioactive material, just what a mother wants to hear, I expect to see Sarah glowing in the dark tonight!! So, I sat for almost 2 hours waiting for her to be done, the waiting room had a coffee machine, so my time was spent loading up on caffeine. When we got back to the room, Sarah was excited to see her breakfast tray, the steroids make her so hungry. Our favorite massage therapist arrived shortly after breakfast, Sarah really needed her massage after all the stressful tests she has had. We relaxed and Sarah took a nap after lunch, then it was time for company. Sarah's elementary school principal, who is also a great friend, came for a visit. It was great catching up with her. Greg also came to see us, and entertain us with the latest painting update. Somehow, I get the feeling that Sarah will not be back in her room anytime soon. Apparently the boys have a few kinks to work out in their system!!
Time for me to go get a mini massage at the caregivers center, so I will be able to face my chair/bed tonight. Sarah is happily catching up on the latest Hollywood gossip in her new magazines.
Bye for now,
M

"Just One More". 2/7/12

Hi all, Well the day started off calmly, Sarah enjoyed her French toast and hard boiled eggs, I enjoyed my very large coffee! We were scheduled to meet with the social workers at 10:30am, but low and behold there were new tests to be taken. I went with Sarah, upstairs for a pulmonary function test, where she had to breath into a large machine. I took pictures, but will let her post them. Then we were off to another test, called a MUGA, Sarah had to have dye injected into her port, and then pictures taken of her heart. The tech let me stay with her, he told me I had nothing to worry about, the machine was not radioactive, only my child!! Of course there was also a lot of waiting in hallways, all Sarah wanted to do was watch the Giants Parade, but alas that was not in the plan. We finally got back to her room at 1pm, where her ice cold lunch was waiting for her. Thankfully the great patient advocate was able to get her a hot grilled cheese sandwich! I went to get food too, and brought her back a soda and chips, after the morning she had, she deserved it. The nurse then came into start a new chemo drug, ara-c, that had to run for 3 hours, and then again 12 hours later, so we already know they will be waking us up at 3am. We actually got to watch part of the Giants award ceremony, so the day was not all bad! The social workers came back, and speaking for myself, I thought it was great to talk to someone about all that has been going on. Yesterday marked 1 month since we first found ourselves at the hospital, unbelievable is the only word to describe what this past month has been like. We had just settled down with our knitting,(sarah is getting really good) when Dr. M paid us a visit. He wanted to get just one more test in tonight! Needless to say Sarah was not happy It took awhile to convince her that a bone marrow test was absolutely necessary. The test was done right here in the room, Sarah was really brave, she is one tough young lady, mom, not so much. Sarah was sedated, so she says it only hurt a little, watching, hurt a lot. I still can't believe what my child is and will be going through, but I am not allowed to be too "mushy" according to Sarah! So now it is 7:30 pm and we are waiting for Zen to come with today's mail and an update on the painting. I think I might have recovered enough from the test to eat something before our 8 pm show comes on. Oh, and let us not forget, tomorrow morning Sarah has "just one more" test, a PET Scan at 8 am. The fun just never ends. M

Take 2 Monday 2/6/12

Today begins Sarah's 2nd treatment. She was decked out in her new Giants hat for the occasion! We arrived at the hospital by 9:30am, after checking in we played musical rooms for a while, and finally settled back into room 309. She is a pro at having her port accessed by now, so the fluids started by 11:30am. Sarah read and I knit, Zen headed off to the paint store. Hopefully Sarah will have a freshly painted lime green room when we go home. We had several visitors today; the nurse educator explained the slight change in protocol, the dietician came to give us some nutrition and diet tips, the massage therapist came, Sarah was excited to see her, and finally Dr. M came to see us and map out the next couple of weeks. Once again, a lot of information to process in a short amount of time. After dinner I retaught Sarah how to knit!!! She was moving right along when I went down to the caregiver center for my massage, didn't even realize how much my back hurt until I got there. When I got back to the room, Sarah's PH level was at 8.5, hooray ready for chemo. By the time the pharmacy had the mixture ready, it was 8pm, just in time for Gossip Girl!! We enjoyed our show despite the interruptions. Now we are getting ready to wash up and get some sleep, even though we know the nurse will be in and out all night long.
I finished hat number 6 today, and got 1/2 way through number 7. Sarah wants to call them "happy hats" and put a picture of a penguin,(her favorite animal and sorority mascot) on the tag. We plan to give them to other patients at the infusion center, hopefully Sarah will enjoy knitting, I could use some help! Well, one day down, hopefully only 2-3 to go.
Good night all.
M

Sunday 2/5/12

Hi all,
Today Sarah and I packed for our trip to Overlook Hospital, tomorrow begins round 2 of her chemo protocol.  We have 4 bags so far! Clothes, crafts, books, knitting, and of course the Notebook.
Sarah still has a headache, so I guess we are going at just the right time.  We baked 2 cakes for the boys, one coffee cake and one chocolate cake, at least Greg will have breakfast while I am gone!!!  We also made ravioli to take with us for dinner tomorrow night, not taking any chances with hospital food.
Then we moved on to packing up Sarah's room so Zen and Greg can paint it while we are away.  She picked a really pretty light lime green, very cheerful.  Before we knew it the Moxham family was at the door, Sarah and Greg were both excited to see their cousins!  We had a great afternoon, little kids are the best medicine ever!!  Sarah, Greg and Zen are all in front of the TV watching the super bowl, and I am about to go hide with my knitting.  
Keep those cards coming, Sarah loves all the good wishes that have been coming her way.
Off to brush my teeth, in an attempt not to eat any more sweets today!
Night all, enjoy the super bowl if you are watching.  GO GIANTS!

Saturday 2/4/12

I have to back track and say that on Thursday three of my dear friends took me out for a belated birthday lunch.  It was a welcome break in my new routine.  Thanks Caryn, Michele, and Lisa, for a great lunch and for always being there when I need you!!!  
Friday we had a rough start, Sarah was tired and scared and really didn't want to go for her outpatient infusion.  Thankfully her wonderful Doctor and the great staff at the Cancer Center  were able to alleviate some of her fears, and proceed on schedule with her treatment.
From there the day improved, we went out to lunch and then Sarah and Greg went to Connecticut to a Quinnipiac hockey game.  Zen relaxed and watched the golf channel, and my friends and I went out for dinner.  Thanks Caryn, Michele and Jackie, having great friends makes the tough times bearable!!!


Today was a very calm, relaxing day; slept late, went to Michael's for more craft supplies, and tackled yet another mountain of laundry.  Sarah had a headache and rested for a while and then her godparents and cousin came for dinner.  Zen made Sarah's favorite chicken dish, it was a big hit as always!


Tomorrow is packing for our hospital stay, a visit from the little cousins, and the Super Bowl.
Time to get some rest.
m

HELPLESS 2/2/12

Warning--- Today I feel helpless!  
Mothers are supposed to be able to make their children feel better, but I can't.
Sarah felt very down this morning, she misses school, friends, and a "normal" teenage life.
I miss those things for her too, we all do.  All the books, arts and crafts, and outings in the world are not going to change the fact that she is sick, (even though she feels ok) and missing her old life.  I feel helpless! I can't kiss it and make it better; I can't stop time so she doesn't miss out on things; I can't make this damn disease go away.  There is no quick fix, and even though rationally we have accepted the fact that the next several months will be filled with doctors, treatments, and more tests, emotionally we are anything but accepting.  
CANCER SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My child is suffering, my family is suffering, I am suffering, and I am HELPLESS to do anything that will make this nightmare end.  If I could make the pain and sadness and fear go away, I would, in a heartbeat.  The fact that I can't hurts in ways I never thought possible.  
So dear family and friends, today I feel helpless and humbled by this all powerful disease. 
It was a sad day.  Tomorrow will be better.   We will hit the ground running, so look out cancer, we will beat you in the end!!
xo   m

Hats 2/2/12

Made by Maria

Inspired and modeled by Sarah

1

1

2

2

3

3

4

4

5

5

1

5

3

4

2