Journal History

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Monday, November 24, 2003 12:25 PM EST

Saturday had started out as a day of great promise for the Pearson family. The swelling in Dana's face had lessened somewhat from the day before and her right eye was slightly opened. Her energy was up and she was feeling strong. Actually, she was feeling good enough to come downstairs to the living room to hang out with Steve and Lindsay. Dana and Steve were watching The Twilight Zone and holding hands, and Lindsay and I were doing some CCD homework. (Casey was at dance rehearsal.)

It was about 15-20 minutes later that Dana experienced a coughing fit. Steve took her upstairs to suction her trache and to use the humidifier on her trache but nothing seemed to give Dana any relief. He gave her Ativan to calm her anxiety and continued to suction her; this helped. He also tried using the oxygen tank to give her a blast of oxygen but it did not work. We later found out that the tank's valve was defective.

I called the hospice emergency number and 911. A police officer, Metuchen paramedics, and a JFK ambulance all arrived on the scene within a half hour of my calling them. Steve and Dana's hospice nurse then decided that it would be best to take Dana to JFK's hospice facilities. Dana was kept there almost 48 hours for observation.

She is now back home. The swelling is bad again and she is unable to see, but she is still very strong and determined and gets around on her own with a little help from Steve. She is presently resting upstairs in her own bedroom. There is nothing like being home in your own surroundings, next to the man you love, and hearing your children's voices. I know there is no other place Dana would rather be. Her unending strength and determination continue to amaze all of us who know and love her. She has become our HERO!!

Continue to pray and keep Dana close to your hearts.

Linda

Thursday, November 20, 2003 12:30 AM EST

Dana's condition continues to deteriorate. Just when you think it could not possibly get any worse, it does. She is becoming weaker and weaker everyday. The swelling in her face and neck continues to worsen. Both of her eyes are swollen shut and she has great difficulty seeing. Her written messages to Steve and me are few and it is becoming more difficult to understand what Dana wants or needs. Steve continues his ever-patient vigil by her side and tries hard to accommodate Dana the best he can. They spend a lot of time in their room just being together holding hands. They are a true testament of love and loyalty.

Dana spends all her time now in bed. Saturday morning was the last time she came down to the living room to hang out with her girls and me. This afternoon, I got a chance to spend a couple of minutes with her in her room but it was difficult for us to communicate and I did not want to frustrate her so I just told her I loved her. She nodded back letting me know she understood. I miss my friend so much.

Please pray for Dana and continue to hold her close to all your hearts.

Thank you,
Linda

Saturday, November 15, 2003 8:55 PM EST

Hello Friends,

Dana's condition gradually worsens everyday. She sleeps a lot more and tires very easily. Today, Dana spent an hour holding her little girls and signing to them that she loves them before she retired for the rest of the day. The swelling in her face and neck is now so bad that both of her eyes are shut. It is very difficult for her to stay awake. The steroids, which Steve gives Dana to help the swelling, no longer have any effect. At this stage, all he can do is try to keep her as pain-free and as comfortable as possible, but even this becomes a near-to-impossible task for Steve.

I really don't know what else to report at this time. I am finding it hard to find the words to describe what Dana is going through and experiencing, but in actuality what my best friend is going through is indescribable and inconceivable. NO ONE should have to live or die this way! It is senseless and without purpose. I see no greater plan. I see no greater purpose for her suffering and devastating disease. I am sorry. I am angry. I am despondent. I am so very sad.

Forgive my straightforwardness. Forgive my indulgence.

Linda

Thursday, November 13, 2003 2:00 AM EST

Hi,

Dana is doing as well as can be expected. There have not been any significant changes in her condition, only slight, subtle ones. Her pain increases a little everyday. The swelling in her face and neck also increases a little everyday and Steve has noticed a deterioration of her skin around the tumor site. Somedays, Dana experiences really bad headaches. Steve responds by giving her as much oxycodone as she needs to be comfortable in addition to her pain patch. Today, he also gave her more steroids to help the swelling and pressure in her neck and face.

The mornings are usually better for Dana. This is when she is awake and feeling strong and alert. As the day wanes, so does her strength and energy and she fights hard to keep her eyes open. I was fortunate enough to get a great, big, strong hug from Dana yesterday morning. It was wonderful to feel her spirit in my arms so strong and determined, but my heart broke at the realization that she was all skin and bones. She has lost so much weight. Dana no longer takes the Nutren shakes she was recommended upon her last release from the hospital because she finds it difficult to keep it down. Steve now starts her day with her regular meds and some compazine to avoid nausea. After an hour, he then gives her a Boost Plus shake and that routine seems to be working really well. Dana takes about 3 cans of the Boost Plus and receives about 1500 calories a day in nutrition. This is the best Dana can do by way of nutrition; her body cannot handle more. Recently, Dana received a large donation of the Boost Plus from one of her generous friends and supporters. This was very fortunate and timely for us since it has now become her only source of nutrition.

Steve continues to be Dana's primary caregiver. We met with a hospice home healthcare aid on Monday, but after an hour of realizing the many limitations the aid had in caring for Dana, Steve determined that he did not need her services at this time. Dana needs help with the administration of her meds and nutrition, but the aid had no knowledge or experience with the feeding tube. Dana also needs daily care of her trache and needs suctioning sometimes 2-3 times a day, but again the aid was not familiar with the procedures or equipment. We later learned that these tasks were outside the scope of a home healthcare aid's duties. Luckily, Steve is a better aid to Dana and she trusts in his ability and management of her care. I rest easier every night knowing that she has him by her side.

The hospice nurse, however, comes to check in on Dana 2, 3, or more times a week. Dana's nurse, Sr. Eileen, has been wonderful with Dana. She visited with Dana on Monday and Wednesday and is due back on Friday. During her visits, she tends to all of Dana's medical needs and checks to see if Steve and Dana need any additional medical supplies.

On Tuesday, Dana and Steve also met with a hospice social worker for counseling. She will meet with Dana and Steve once a week and has also recommended another social worker for the girls.

Steve is continuing to administer the chicken virus drops to Dana and we are still praying for a miracle. Joins us in this endeavor.

Dana continues to read all your messages and e-mails. Please continue to send her your messages of love. As always, thank you for your support and prayers.

Love,
Linda

Saturday, November 8, 2003 7:40 EST

Hello Friends,

Yesterday morning, Dana and Steve met with the hospice nurse. She introduced hospice services in detail and went over all the different plans of care with them. Starting Monday morning, a hospice nurse will visit Dana five times a week from 9am to 1pm everyday. The nurse will be on hand to make sure Dana has all her medications and to help Dana with her daily routine i.e., showering, eating, etc. Steve already does all of this but now he and Dana will have help and extra support weekday mornings. The hospice nurse also takes care of dealing with refilling prescriptions, ordering medical supplies and making sure that Dana has everything she needs. This also means that Steve does not have to deal with pharmacies or medical suppliers. Hospice services also has an emergency care system that Steve can call at anytime for help or advice. He can talk to a nurse in a matter of minutes. I think I speak for Dana and Steve when I say that we are all resting easier now that we know we can access such a great resource. It is much needed at this time.

Dana is still struggling everyday. She sleeps a lot and feels very weak. Her pain is being controlled. Whenever she has breakthrough pain, Steve gives her additional doses of oxycodone. He tries very hard to keep her as comfortable and pain-free as possible. The swelling has subsided somewhat due to the steroids, but it is still pretty bad. She still feels pressure in her face and neck. Yesterday, she had her second day of the NDV. It is still too early to see if it is being effective in any way. We will continue to update on its progress.

Steve and Dana want to thank you for all the cards, gifts and messages. Dana has been unable to respond to her private e-mail, but Steve and I have been reading your messages to her. Thank you and please keep them coming. I am sure that your prayers and words of support and encouragement continue to remind Dana that she is not alone.

With love and gratitude,
Linda

Thursday, November 6, 2003 1:00 PM EST

Hello Everyone,

I wish I had better news, but Dana continues to have more bad days than good ones. Today is worse than yesterday. The tumor continues to grow and cause her a great deal of swelling and discomfort. Some mornings, the pain is so bad that she needs additional pain medication. There is a lot of pressure in Dana's neck and face; so much so that her left eye is completely closed and her sight is being compromised. She continues to have difficulty breathing and sleeps a lot during the day. She is very tired all of the time and fights hard to muster a little bit of strength and energy to hang out with her girls. Always the mom!!

Steve went to Dr. Chang's office yesterday to pick up the vials of chicken virus. The virus is actually called the Newcastle Disease Virus (NDV). It is a yellow powder which is mixed with 10 drops of distilled water and administered in the form of nose drops which Dana then inhales. She will get the drops 4 times a day, 3 times a week, every week for three months. She started the treatment yesterday, but we should know relatively soon if the NDV is working for Dana. Dr. Chang will evaluate Dana's progress in one month's time. If her illness worsens while under the NDV, it may indicate that the NDV has not been effective.

The NDV has possible side effects which Dana may experience by way of flu-like symptoms (fever, chills, body aches, conjunctivitis, etc.). Even in her weakened and debilitated state, Dana is ever ready and willing to take on these side effects in the hope that the NDV proves to be the cure for her cancer. We are praying it will be and hope you will all join us in this prayer.

Please continue to pray and send loving messages of love and comfort to Dana. Thank you.

Love,
Linda

Friday, October 31, 2003 11:59 PM EST

Hello Friends,

Dana has had a pretty rough week. She has tried to get online to read and answer some e-mails and to update her website, but she has been too tired and unable to stay on very long. Visiting Dana this past week, I have found that there are bad days when she can barely keep her eyes open and good days when she is strong enough to venture out on short shopping trips. In many ways, she is very self-sufficient and needs very little from Steve and me. She is amazingly strong and determined. Sometimes, I wonder where she gets her strength from but then I look at Lindsay and Casey and know exactly from where it comes.

Unfortunately, the "good" days are becoming few and far between. Today, Dana had another bad day. The pressure in her face and neck continue to increase with an unyielding force and she suffers from bouts of severe pain and discomfort. Her stomach was queasy and she laid still most of the day in fear that she may vomit her only can of food and medications. Later on this evening, she was able to have another can of the Nutren and it seems to be staying down.

There are no real updates on treatments or medical reports to comment on, but we are hoping that Dr. Chang's chicken virus will give Dana another chance at recovery. She was supposed to go today for blood work but canceled because of how badly she felt. She will try again Monday to get the blood work done. We will know next week when she will be scheduled to see Dr. Chang and when treatment can begin. This virus is very experimental, but we are just praying for a miracle and I hope you will all join me in praying for the same. Dana is in great need of a miracle and she has proven to us all how very much she is deserving of one.

Wednesday, Dana also met with the ENT and had the inner trache tube changed. She is due back for a new one in another month's time. As the day wears on, Dana becomes more congested and her breathing becomes more labored so she needs to use the humidifier to relieve the congestion. Presently, she is on the humidifier getting some relief.

Today, the girls celebrated Halloween by having parades and parties at their respective schools. They also went trick-or-treating this evening and made out quite well. Lindsay is having a Halloween party sleepover and Casey stayed up with Mommy and me to watch Halloween Nick Toons. Unfortunately, Dana was unable to join in the festivities, but she made sure ahead of time everything went smoothly for Lindsay and Casey.

Dana and Steve have also decided to celebrate a special Christmas with Lindsay and Casey this weekend. It is really just for Dana and her girls. It is special and private, but Gene, Daisy and I are privileged to be a part of it. The girls have a good understanding as to why it is being done. Christmas was always Dana’s favorite holiday, as it is for most of us, and to have a special Christmas with her girls is making her very happy. Dana has purchased most of the gifts herself with a little help from her elves. We hope this weekend Dana is feeling well enough to enjoy the Christmas magic.

Please continue to pray and send loving and encouraging messages to Dana. She reads them all and is grateful for all the love.

Love,
Linda

Monday, October 27, 2003 6:53 AM CST

Hi,

I had a pretty sleepy day yesterday. I couldn't seem to keep my eyes open all day. But it felt good. I guess I needed the rest. My belly is doing better in keeping the food down. Linda arrived and we are all thrilled to have her here! She will be staying all week and Gene will meet her here next weekend. Wed I have an appointment with the ENT to change my trache tube and I think that is it for medical stuff. It's hard to believe that's all the appointments I have this week. I had a few visitors this week and it was nice to see them. Please again understand, it is nothing personal if I turn you away. It just means at that moment I was not up for company. My life is so unpredictable, I don't even understand it sometimes. Everything is still the same, the swelling is still there probably getting slightly worse every day due to increased tumor growth. The pain is still under control due to the increased pain patches. I guess we could say everything is "stable" for the moment. Some moments are better than others but I am trying to make the best of the good ones. Lindsay had a great time on her brownie sleepover and next weekend she goes to a friends Halloween Sleepover party. She sure will be busy. The kids have some exciting things coming up. I will end for now and update again soon. Thank you again for all your love and prayers. They mean so much to me.
Love,
Dana

Friday, October 24, 2003 5:08 PM CDT

Hi,

We went to the doctor today for blood work and all is well. It doesn't look like this chemo did anything for the tumors so we are going to discontinue it. Actually everything looks and feels like it is growing. That is probably why I am having so much swelling all over my neck and face. It is not that painful but it is incredibly uncomfortable. We briefly spoke to Germino about Dr. Chang's chicken virus. He was not against it in anyway since there is not much left for him to offer. I could do a phase I trial with him if I choose to or I could do Dr. Chang's natropatic chicken virus. With both, I don't have a great chance, but it is a chance and I have to take it. You never know, miracles do happen. I always have the opportunity of calling hospise as well, which has not been ruled out yet. I have to see how each day progresses and how I am feeling. If I can keep my energy up, I think I can handle it. The virus does not have many side effects so it's a matter of signing some legal papers, etc. and getting the stuff into me. Steve will be talking to Dr. Chang on Monday so call him Monday night or Tuesday to get the update on that. When we came home today, I had a little episode with vomiting. I took some water through my PEG tube (I think too fast) and vomited my whole lunch up. Of course this upset my stomach for the rest of the day and I had to shower and take a nap. I am still feeling a little queezy but I hope by later I can take another can in. I have read all your e-mails and entries but have not responded to them yet. I just have not had the energy. Please don't be upset by this. I really have not felt like company in the past few days and sometimes I just need time to digest what is happenening to me alone in my head. I hope you all understand. Linda should be here momentarily with Daisy so I am going to get ready for her. Lots of love,
Dana

Thursday, October 23, 2003 1:25 PM CDT

Hi,

Everything is still about the same. Tomorrow I go for blood work at the clinic. I assume everything is OK. We are looking forward to Linda's visit. Lindsay is going on a Brownie weekend from Sat-Sun so she is really excited. She told me "Mom, it's for 2 days, don't worry, I'll be fine." I know she will. It will be fun for her to get out there with everyone and have a good time. She loves sleepovers. Linda is planning on staying the week with us so I know she won't be that dissappointed about not be here those days. Last night I slept very well so I can't ask for much for than that. That's the update for now. I'll check in again soon. Thanks for all the encouraging messages.

Love,
Dana

Wednesday, October 22, 2003 10:59 AM CDT

Hi,

I had a better night for a change. I ate, stayed up late and slept pretty good. The swelling is still the same and I still have some pain. I took some pain meds when I awoke so I think that is why I am a little sleepy today. Overall, I feel pretty good. I've been up and out of bed most of today so far. Steve is home today and just left for the supermarket. He is taking very good care of me. We had our cleaning girls here this morning so my house smells nice and fresh. He got all the laundry done so everything seems to be in order. Not much else to report today so I'm going to sign off. Thank you all again for everything you do.

Lots of love,
Dana

Tuesday, October 21, 2003 8:00 PM CDT

Hi all,

Sorry again for not updating. Things have been so-so as I'm sure you all know from calling Steve. Last night was rough. I had problems with secrections and vomiting. Today was a little better. Cousin Nancy came for a visit and that was nice. I haven't seen her in a while so it felt good to sit with her. I was very tired all day but I just rested and now I actually feel a little better. My major problem is eating right now. I am just so scared to take that liquid crap because I don't want to vomit it up. It may be from the increase in the dose of the chemo but I am not sure. I am not going to try and figure out why every little thing happens to me anymore. It's just not worth it. I want to thank everyone for all the phone calls today and over the weekend. Steve has updated me on who has called and all of your concerns. I have also read all the e-mails as well. If I don't get back to you, please don't get your feelings hurt. Some days I am chatty and some days I am not. I really want to see all of you but it will just have to be in time. So please keep calling and e-mailing me. Eventually, I will say, yes, come over now. My mind is just on overload right now. Linda and Gene and Daisy are coming this weekend so we are all looking forward to that visit. I know the kids can sure use a pick me up as well as Steve and I. I promise I will try to get on here more often and give you details. Lots of love and hugs.
Dana

Saturday, October 18, 2003 8:08 AM CDT

HI,

THIS IS NOT THE WAY I LIKE TO TELL NEWS, BUT I CAN'T TALK, SO IT WILL HAVE TO DO. WE WENT FOR CHEMO YESTERDAY AND WHILE THERE THE DOCTOR LOOKED AT THE CT SCAN. THE NEWS IS BAD. THERE IS ALOT OF NEW GROWTH IN MY NECK AND FACE AREA. THIS IS WHAT IS CAUSING THE INCREASED SWELLING, PAIN AND ANXIETY. I RECEIVED THE CHEMO AND HOPEFULLY IT WILL RELIEVE SOME OF THESE SYMPTOMS. IT DOESN'T LOOK PROMISING THOUGH. ALREADY I AM VERY SWOLLEN THIS MORNING. I DID MANAGE TO SLEEP ON AND OFF WHICH IS A BLESSING. THE NEXT THING DISCUSSED AT THE CLINIC YESTERDAY WAS HOSPICE. THIS WAS SOMETHING STEVE AND I WERE NOT WANTING TO HEAR BUT I KNOW THAT IT IS SOMETHING WE MUST TALK ABOUT AND CONSIDER. AS I WRITE THIS, TEARS ARE ROLLING DOWN MY FACE. I DON'T KNOW WHAT I NEED OR HOW WE ARE GOING TO COPE WITH THIS. PLEASE CONTINUE TO BE A SUPPORT TO US AND DO NOT PUSH AWAY. WE NEED YOU MORE THAN EVER NOW, I'M JUST NOT SURE IN WHAT WAY. I GUESS I WILL FIGURE IT OUT ONE MINUTE AT A TIME. PLEASE CALL WITH ANY QUESTIONS. STEVE WILL BE ANSWERING THE PHONE AND IF HE DOESN'T, IT MEANS HE NEEDS A BREAK OR HE RAN OUT FOR SOMETHING. I KNOW THIS IS ALOT TO TAKE IN FOR ALL OF US, SO BEAR WITH ME. I LOVE YOU ALL MY SWEET FRIENDS AND FAMILY.
LOVE,
DANA

Friday, October 17, 2003 7:00 AM CDT

Hi all,

I had a terrible night last night. My face and head were terribly swollen and I had uncontrollable pain. We called the doc and I took some really high doses of pain meds through the night. Thank goodness that did it. I was still up alot but I did manage to get some sleep. Today I go for chemo and he is going to increase my pain patch so this doesn't happen again. Chemo is at 11 so I will report again after we return. Wish me luck.

Love,
Dana

Wednesday, October 15, 2003 8:00 PM CDT

Hi all,

I went to the ENT today and he scoped me up the nose and down the throat. He said he saw some "lesions" on my larynx. This could mean that it is the cancer spreading or it could mean something else. Who knows? But this is what is making my voice noisy. I guess because something is sitting on it and is preventing air from getting through. Something like this, I guess? Who knows. Everything is so up in the air and not definite. It's enough to drive one crazy. So since I cannot scream, please do it for me! I also had a cat scan of my neck today. Hopefully this will help determine why I am having so much swelling. Friday, I will have my chemo, and please say lots of prayers that it works and does something other than swell my face and neck up. Energy wise, today was a much better day. I did some running around and stuff around the house and it felt good. I don't know whether or not it was the steroids or just me, but I took advantage. That's all for now. Will let you know what tomorrow brings.

Love,
Dana

Wednesday, October 15, 2003 7:05 AM CDT

Hi all,

Sorry I haven't updated but I've been very sleepy and swollen. I started the steroids again since that is the only thing that helps it and I am still swollen. Today my eye is very puffy and I'm not sure if it's the way I slept or if it is from this terrible swelling spell. Also, I'm sorry about not taking phone calls lately. My voice is gone and I am going to visit the ENT who put the trache in to see what is going on. I'm hoping something needs to be adjusted. I really can't talk much and it is very frustrating. Please don't take it personally if I don't get to speak to you. Send me e-mails and I promise I will respond to you. Hopefully after today, I will have some relief from that.

That's the update for now.

Love,
Dana

Friday, October 10, 2003 9:39 PM CDT

Hello,

I had my office visit with Dr. Germino today and blood work done. He thinks that the area behind my ear is larger. This is just what he thinks and of course he is not sure. The bigger question is whether or not the Doxil is working. We know for sure that it has done some damage but is it STILL working? Next Friday I will have another round and it will be at a higher dose. I may have more side effects, including lowering my counts, redness and cracking on my hands and feet and swelling. The swelling seems to be a big problem with me since I still am having it. They are not sure of the cause of the swelling, it could be many different things. I have been taking the steroids for the last 2 weeks and he wants me to stop them since they can have some nasty side effects long term. He wants me to try Celebrex and see if that helps any. The visit wasn't that positive but it wasn't negative either. I don't have many other options so I will go on with another round of Doxil and see how it goes. My energy is getting better every day so I am very thankful for this. Each day is a gift that we all seem to take for granted. I'm trying to enjoy each one to the best of my ability. Thank you all for your prayers and support. I have the best friends!

Love,
Dana

Monday, October 6, 2003 12:06 AM CDT

Hello,

I would first like to thank all of you who participated in the prayer ceremony last night. It was very touching and I feel so loved by so many near and far. Thank you again Mary for arranging it. It really means so much to me and my family.

I am feeling pretty good today. The only complaint is my voice. I am still swollen so I assume so are my vocal cords. My voice is very faint so I cannot talk much. I am also coughing up alot of phlem (sp?) which may have to do with it as well. Other then this, I feel pretty good. Linda and Gene left last night so I am on my own. So far so good. We are going to miss them terribly but I know I have to start taking care of things around here. Don't worry, I will be calling on every one out there for help!

Tomorrow I am going to the day spa for a much needed manicure and peticure. I am looking forward to some papering. Fridsy, I have blood work and a doctor visit. That's it for this week. I'll let you know what is going on after that.

Thanks for checking in.

Lots of love and thanks,
Dana

Thursday, October 2, 2003 6:55 PM CDT

Hi,

Today when I woke up my face was very swollen. It was all the way from my eye down to my chin. I assume this is from the chemo working. It better be. I was quite uncomfortable so I called the doctor. I took 2 steroid pills and that made me feel better. As the day went on, I felt much better. My face and neck are still swollen but it is tolerable. Tomorrow I will see the doctor and hopefully this swelling problem will go away. That is it for now. Thanks for checking in on me.

Love,
Dana

Wednesday, October 1, 2003 8:34 PM CDT

Hi,

Just a quick update. I am still experiencing swelling around my neck and face. It is not that painful but it is uncomfortable. It is getting close to one week post chemo so I am hoping this will be over soon. Other than that, I am feeling pretty good. My energy is coming back and I am feeling stronger every day. Today Linda took me to Target for a little shopping spree. I rode in one of those scooters and it was fun. Even though I knocked over some displays and banged into people, etc., it went well. I must say I was exhausted by the end of the trip and pretty much stayed off my feet the rest of the day.

That's really it for now. I have blood work on Friday so I will know more then. Thanks for checking in on me. Hope to see all of you soon.

With love,
Dana

Sunday, September 28, 2003 4:08 PM CDT

Hi there,

Last night was rough. My neck swelled up like it did 3 weeks ago. Thank God I have the trache so I could breathe. It felt like someone put a rubber band around my neck. It was very uncomfortable. I called the doc and he told me to take the steroids. I took them and within a couple of hours, I had relief. I was worried that I wouldn't be able to sleep but I had no problem.

That's about it for now. I'm getting stronger every day and I am up for visitors. Please call first and come on over!!! I miss everyone.

With lots of love and thanks,
Dana

Friday, September 26, 2003 6:11 PM CDT

Hello all,

It's me, DANA! I'M BACK!!!!!!!!!!!!!!!!

I would like to thank all of you for your continued prayers and support during this very difficult time. I received so many cards from all of you so please forgive me if I forget to thank you individually. Please know that I read each and every one of them and they mean the world to me.

Today I went to the clinic and received my chemo. I snoozed through most of it since they doped me up on so much benedryl. Please continue to pray that this chemo works for me and shrinks the nasty tumor on my face.

My strength is coming back very slowly this time. I guess since I was in the hopsital 15 days, it's going to take some time. I did manage to go to Lindsay's open school last night and had the pleasure of meeting her wonderful teachers. I can see why Lindsay loves going to school now. They are very sweet and loving and we are so grateful that Lindsay has them this year. After open house, I was exhausted from all the walking but I was so happy that I went.

This is all that is going on right now. I probably will not be updating every day unless I have new news so please don't worry if you don't see new entries.

Thank you very much for all your support.

With love,
Dana

Tuesday, September 23, 2003 10:45 AM EST

Hello Everyone,

Dana arrived home yesterday afternoon around 3PM! She is so happy to be home. As the girls came home, they would each ask, "where's Mommy?!!" and then run quickly up the stairs. They were just so excited to see Mommy home.

Dana's strength is quickly returning; she goes up and down the stairs in her house without missing a beat. She wants to do EVERYTHING!! And she is! There is no stopping Dana when she sets her mind to getting better and it is this spirit and strong resolve that we all admire so much.

Of course, coming home has been an adjustment for Dana. Sleeping was difficult last night, and at times, Dana experienced discomfort and a little pain. The pain, however, is being managed with the Fentanyl patch and a little Tylenol.

There have also been some additions to Dana and Steve's home decor. Boxes and boxes of medical supplies were delivered yesterday. These boxes were filled with plenty of supplies to help Dana maintain her trache and the PEG-tube so that she can become self-sufficient and be well taken care of at home. Steve was on hand to learn about the different machines and "gadgets."

Overall, the Pearson family is doing very well in adjusting. I think this is because they are so close and honest with each other about everything. As always, each new day brings new challenges but the Pearsons are ready for them!

This morning, a nurse visited with Dana to answer any questions and concerns and to make sure Dana knows how to use all her supplies and different machines. (I think Dana may know more about these things than the nurse does. Dana is a Pro!) The nurse will also go over some other issues like showering, maintaining the trache and PEG-tube, Dana's medications, and other daily medical routines.

All in all, friends, today is another good day because Dana is home!

Linda

P.S. Let us continue to pray for Dana. Her road is long and arduous. Being home is a step in the right direction but the journey is far from over. Keep her in mind and close always in your hearts.

Sunday, September 21, 2003 10:35 AM EST

DANA IS COMING HOME!! YEAH!!

Steve got the good word this morning. Dana will be released from the hospital tomorrow. We are not sure what time but as soon as she is home, I'll send out another entry. Maybe she will update the journal herself and say hello!! I know you all have been hoping to hear from her.

Steve, Lindsay and Casey are so excited!! They can't wait! And neither can Gene and I! We just feel so privileged to be part of yet another small miracle in the Pearson household. We will continue to pray for that really big miracle that will cure Dana for good. And we know that we are joined by so many in this endeavor.

Thank you,
Linda

Saturday, September 20, 2003 8:30 PM EST

Hi,

I apologize for the late and brief entry. It has been a little hectic. I just wanted to let everyone know that Dana's G-tube (PEG-tube) surgery was a great success. It was over in 15 minutes and she was sitting up an hour after the procedure. At around 3 or 4 o'clock yesterday afternoon, Dana began to get fed through her new G-tube. She experienced a little acid reflux and the nurses gave Dana some Mylanta and she was all better.

Dana is doing well and the color in her cheeks is returning. Overall, yesterday was another good day.

I will try to update again later this afternoon after Casey's soccer game and our visit with Dana and the girls.

My best to all,
Linda

Thursday, September 18, 2003 11:56 PM EST

Hello Friends,

Another day of good news and positive developments! Dana is doing so much better. She is getting stronger and stronger each day. Today, Steve took Dana for a romantic walk down the hall to the elevators and back again! They were so cute together. :) Dana was very exhausted after her excursion around the ward, and when she returned to her room, she slept and rested for a little while.

Dana also met with her oncology team today and they emphasized the importance of nutrition. (About time, I say!) They were hoping that Dana had decided to go ahead with the G-tube. Steve and Dana discussed it and thought it best to meet with the gastro surgeon to get some answers about the procedure, recuperation time, etc. The surgeon was in 10 minutes later to discuss all of Dana and Steve's concerns. (The three of us were shocked in the quick turn around.) The gastro surgeon was even talking about doing the surgery today or tomorrow. (We were not holding our breath.)

With the G-tube, Dana would be able to get fed liquid foods, nutrients and oral medications. The G-tube’s purpose is to allow Dana to get nourished while she is unable to eat and swallow food on her own. When Dana does begin to swallow, the G-tube can be removed. But in the meantime, she has a backup plan in case she is unable to eat.

This evening, we finally got word; the operation is scheduled for 11:00 a.m. tomorrow morning. The whole operation takes about 8 minutes, but it may take longer because of Dana’s special circumstances. In the meantime, they have started Dana on the intravenous TPN nutrition, which goes directly into her port. She can now begin to get some kind of nourishment. Things seem to be moving pretty quickly.

While in the hospital this week, Dana had two swallowing tests done. The second one was conducted this afternoon. Unfortunately, Dana was still having difficulty swallowing; so that cold bottle of Coke Dana has been thirsting for will have to remain on ice. We were so disappointed. Dana wants to get back to eating normally so that she can get strong enough to continue her battle with the beast.

After her physical therapy session and her promenade down the hall with Steve, Dana was pretty exhausted so her only special visitor today was Casey. Casey was so excited to see Mommy and showed Mommy her new “Bye, Bye Birdie” dance and song. They played a game of UNO (DP = 1; CP=1), and Casey spent the rest of her visit drawing pictures for her Mommy on the erasable board in Mommy’s room.

Even though a lot happened today, I do think that Dana’s highlights of the day were Casey’s visit and the refreshing shower she was finally allowed to enjoy!! Aah, it does the body good!!

I will try to keep my four point people updated on Dana’s progress during and after surgery.

Good Night and Be Well,
Linda

Wednesday, September 17, 2003 12:10 AM EST

Hello Friends,

Two Great Pieces of News Today!!

Dana is speaking!! Steve and I were there in the hospital this morning when the ENT inserted a valve at the end of the trache tube and Dana spoke her first words in 11 days!! I know, I know, looking at recent guestbook entries, this is by now "old news" but it is still GOOD NEWS!! I never expected that Dana's voice with the trache would sound like Dana but it does!! It does!! As you can see, I'm still very excited about this new development. Actually, I am shocked we saw the ENT at all this morning! He said that he had expected Dana's first words to be "it's about time" since he knows she had been waiting on him for the last two days. (Those of us who know Dana really well know that those would not have been her exact words.)

Dana is also walking (a little bit). She had her first session of physical therapy today which included some arm and leg exercises and walking around a little bit in her room. The therapist found her very strong and able despite the fact that she has lost so much weight in the last 11 days. Dana is now two steps closer to home!! She is walking and talking!

Dana and Steve also met with her oncology team and reviewed some options for getting Dana her much-needed nourishment. The TPN port and the G-tube were discussed. She will be evaluated by doctors tomorrow for the G-tube option which would nourish Dana through a feeding tube located in her stomach. According to Dr. Germino, Dana should have been on the TPN two days ago. It is standard procedure to keep a patient in the hospital for 48 hours to evaluate the efficiency of the TPN, so if Dana had been hooked up to the TPN two days ago as she should have been, she would be yet another step closer to home. Someone obviously dropped the ball on this one but like Steve says, this happens all the time, and it is almost always expected. In the meantime, Dana has not received any nourishment while in the hospital that she has been able to keep down.

Dana also sat up for a couple of hours today and she felt strong and animated because she can TALK!! She was so excited she called Lindsay and Casey at school. She just could not wait to have her girls hear her voice! They were a little stunned but excited after the initial shock wore off. Understandably, their next question was "so you are coming home tomorrow?" If life was only that simple...

Good night to all. I hope and pray that tonight Dana's good friends and supporters are home safe and sound with their families. Hold them tight and cherish every moment!

Keep those prayers coming. Our love and prayers can get Dana home!

Linda

Wednesday, September 17, 2003 7:25 AM EST

Hello Friends,

On Sunday, the transfer orders went through for Dana to be moved out of ICU and into a regular room. (She is one step closer to coming home!!) However, there were no rooms available so Dana was kept in ICU, where she gets special attention and care from her ICU nurses. When Steve left the hospital last night, he was told that there may be a good chance that Dana would be moved during the night. We'll find out today.

Dana still has not seen the ENT and a lot of her questions regarding swallowing and talking have gone unanswered. Hopefully, she will be get some answers today.

Dana had a quiet day and spent most of the it sleeping and resting. Her pain and discomfort is being managed.

I'll update again today as I get more information regarding Dana's new room assignment.

Thank you for your continued prayers and messages.

Linda

Tuesday, September 16, 2003 8:00 AM EST

Hello Friends,

Yesterday, Dana had an OK day. Her nausea continued and had a couple more vomiting episodes. When I saw her in the morning, she looked very tired (both physically and emotionally). A friend in the guestbook described it accurately: "rollercoaster;" and it is just that, a rollercoaster of physical ailments, endless complications, and a full range of emotions.

Yesterday, Dana was experiencing a great deal of pain and discomfort due to the trache plate being too tight against her throat. She felt like it was choking her and may have also had something to do with the vomiting and nausea she has been experienincing. An ENT was supposed to stop by to readjust the trache plate but he never came. The nurses were unable to touch it because of hospital policy so Dana has had to bear the pain and discomfort. Steve and one of the nurses adjusted Dana's position on the bed and that did alleviate the discomfort.

The pulmonary technician told Dana that she would likely be taken off the ventilator completely. Thus far, the ventilator has been aiding Dana's oxygen intake since the breathing tube was taken out last week. The ventilator hose sits over Dana's trache hole and supplies her with oxygen. With it, she breathes at her own pace. The doctors think she is strong enough now to have it taken off completely.

We are also waiting to hear from the ENT concerning Dana's swallowing and talking. Dana thinks she can swallow but needs to have the swallowing test done first. It could not be done yesterday with Dana's nausea.

Dana is still on the pain patch which at times fall short of taking care of her pain completely. She is receiving fluids but has not received any food since the feeding tube was removed Sunday. Hopefully, the ENT will meet with Dana and Steve soon and tell her when the swallowing test can be done. Once that's done and Dana is able to swallow, she can eat and take her oral medications. I hope that day comes sooner than later.

Keep on praying for and loving Dana. She needs our help more than ever. It may at times like we are just not doing enough, but please know that you are.

Linda

Sunday, September 14, 2003 1:00 AM EST

Hello Everyone,

Unfortunately, Dana did not have a good day today. Steve took Lindsay into see Dana this morning and their visit started out well. Lindsay and Mommy played UNO, and Mommy won the first round. Lindsay said that she and Mommy were communicating really well and that she knew what Mommy was saying all the time; she could almost hear her whisper. During their second game of UNO, Lindsay says that Mommy started throwing up, and she called Daddy right away. Lindsay says that she was not afraid of the vomit, but she was scared because she saw Mommy’s face turn red and tears were coming out of her eyes. Steve later explained that Dana had thrown up, and the vomit had started to seep in to the trache tube obstructing her breathing. Dana was mortified and pained about what Lindsay had witnessed. Both she and Steve have tried very hard to keep things as normal for the girls and have tried to not make things so scary. Today was a scary day for both Dana and Lindsay.

Steve brought Lindsay back home and broke the news to Casey that Mommy could not see anyone else today. Since Casey has had the sniffles the last two days, this was probably the best for her and Dana. Steve quickly returned to the hospital and was with Dana till about 10:00PM this evening. During this time, Dana continued to throw up, so the doctors decided that it would be best to remove the N-tube from her nose. They had said it was going to be easy to take it out, but when the nurse went to remove the feeding tube, she found resistance and caused Dana more pain and discomfort as it came out. I guess the good thing is that it did come out and that now she has one less hookup to deal with. I should also add that they took Dana off the Fentanyl because the pain patch has had sufficient time to start working. Dana's port, which is located underneath her skin, is now free. So in actuality, Dana had two hookups removed today, the N-tube and the Fentanyl drip.

Unfortunately, visiting was suspended for yet another day. I know many of you are eager to see her and I know this would cheer her up, but we need to wait until she gets a little stronger. I thank you for your patience.

When Steve left this evening, he said that Dana was feeling much better. She had slept a lot and was no longer vomiting. The nurses did a great job at keeping Dana feeling fresh and clean which made her feel more comfortable.

On a lighter and much happier note, Dana received a big surprise from the FODs (Friends of Dana) of Metuchen. Carolyn videotaped Lindsay during her first tap lesson last Friday and Michele videotaped Dana’s many friends and supporters. The tape included a well-sung rendition of Carolyn’s friend Barry’s song “I Can’t Smile Without You” by the Taylor girls. Steve said that the tape with everyone’s smiles and good wishes brought Dana some chuckles. What a wonderful way to “visit” with Dana at the hospital!! Great idea!!

And please keeping signing the guestbook with words of support, prayer and encouragement. Dana loves hearing from all her friends and supporters! Thank you.

Linda

Saturday, September 13, 2003 10:55 PM EST

Hello Friends,

Today was another good day! Dana saw her two beautiful daughters, Lindsay and Casey! Even though, Dana was still hooked up to a lot of machines (heart monitor, N-tube, Fentanyl drip, and the vent for a little oxygen), she was able to sit up in a great big comfy hospital chair to greet her daughters who had not seen her in 7 days! She looked strong, energetic, and elated to see her girls.

Steve and Dana decided that the girls should see Mommy separately in order not to tire Dana out and overwhelm her with endless questions from both girls competing for her attention. Prior to seeing Dana, Lindsay and Casey each met with a healthcare professional who used a puppet to explain what Mommy's many machines did to help her get better.

Later, the healthcare professional stopped in to introduce the puppet to Dana, and we saw that it had a trache and N-tube attached to it. The girls were able to tell Mommy what everything was when they came in to see her. They were also rewarded with cute Beanie Babies and crayons. They did great and adapted well. Lindsay enjoyed playing Tic-Tac-Toe and Hangman with Mommy, and Casey couldn't stop wanting to kiss and hug Mommy.

Both visits were short but filled with quality time and lots of love. After Lindsay and Casey left, Dana slept for a long time; she was exhausted. Steve is still with her now; he would want nothing else than to be with his wife holding her hand, stroking her hair, and making her laugh.

Dana has continued to breathe on her own and is getting stronger and stronger each day. Each day brings new possibilities for coming home. The only medical update as of today is that she has been put on the pain patch. Once she has been on it for 24 hours, the doctors will then take the Fentanyl drip out of her port. She will be relieved of yet another machine and hookup. Yeah!! This may happen as soon as tomorrow so stay tuned for more information.

Please know that as of yet Dana has not made any plans for visitors. We will see what tomorrow brings her, and Steve and I will let people know as soon as possible.

With gratitude and love,
Linda

Saturday, September 13, 2003 8:00 AM EST

Hello Everyone,

As most of you already know, Dana was taken off the ventilator yesterday afternoon!! She is feeling so much more comfortable. She wrote to us in big letters, "I CAN BREATHE!!!!!" (No more sucking air in through a Pixie Stick, I say.) She is looking great and feeling stronger and stronger. The trache site is a little painful, but she has been bearing that pain well.

Last night, Steve spent a late night with Dana and when he returned home, he told me that they decided that today would be a good day to bring in Lindsay and Casey to see Mommy! I was so delighted and excited about this; I cannot even tell you! They miss Mommy so much and I know that Dana misses them even more. Yeah, the Pearson girls will be reunited today!!!

In order for Dana to get a more restful sleep last night, the doctors put her back on the ventilator so she would get more oxygen while she slept. This ventilator tube is connected to the trache tube and is about the size of a quarter in diameter so Dana gets a little help breathing. Tomorrow, she'll be off it again so that she can continue to breathe at her own pace with her own power.

I'm sorry to say I need to make another correction on yesterday's entry. The doctors' main concern with Dana right now is her breathing. Eating orally is not as great a concern right now, so they will not find out about this for another couple of days. Dana is receiving her nutrients through the N-tube still. There has been no word on when they will be removing the N-tube.

After Dana sees her girls today, she will let us know if she is ready to see other visitors. As soon as she does, we will set up a schedule and have people come in to say hello but stay only for a couple of minutes. Not only can we not have a lot of people there at one time (2-3 maximum), but we want to reduce the risk of Dana getting an infection. So please hang tight until Dana gives us the thumbs-up for visitors. Popping in right now would just be too overwhelming for her and may put her at risk. I know you all understand that, and I am sorry for having to hammer the point home. Dana knows how much you worry about her and love her, and she would like nothing more than to visit with you. I know I speak for both Dana and Steve when I say they appreciate your messages of love and support, your prayers, your cards and gifts. Thank you!

Linda

Thursday, September 11, 2003 12:50 AM EST

Hello Friends,

Dana went into pre-op at around 3:40 PM this afternoon (almost 2 hours after the scheduled time). However, since there was little prepping to be done, Dana went into surgery very quickly and came out in 45 minutes. She was back in her room by 5 PM for recovery. The doctors said that she did wonderfully and that the operation was a success. When I saw her back in her room, she was alert but exhausted. She gave us a thumbs-up and we knew she was O.K. (the ever-constant warrior).

The ICU nurses and pulmonary technicians were monitoring her closely during her recovery. Steve stayed by Dana's bedside and closely watched her and the vitals monitors. He is her biggest advocate and knows so much about the treatment that Dana is receiving and knows how to read the monitors. Dana and I tease him by calling him "Dr. Pearson."

Shortly after surgery, Dana was put back on the pain medication (Fentanyl). When Steve asked her if she felt a lot of pain, she signaled a little bit. ("A little bit?" She really never ceases to amaze me!) Even though her trache is connected to a ventilator, the doctors will begin weaning her off of it so that she can start breathing on her own. Tomorrow, she will also try swallowing and see if she is able to get nourishment orally instead of through the N-tube.

Please know that today we started a new system for calling in order to keep everyone up-to-date. I was unable to make too many phone calls, so I relied on several point people to pass along the information. They are Judy for the Baum/Nerzig families; Kerrie for the White family; Carolyn for the FODs; and Mary Jane for MDO. I cannot thank you four ladies enough for helping me out today (and every day)in notifying everyone about Dana's status. Thank you!

Please also know that I will continue to carry Dana's cell phone so feel free to call it or her hospital room at (732) 253-3323.

Linda

Thursday, September 11, 2003 7:30 AM EST

Hello Everyone,

Dana has been scheduled for the tracheotomy surgery today at 3PM. There is a small possibility that her surgery may be bumped to tomorrow at 4:30 (her actual scheduled day and time). Dana is eager to get the trache done and was upset to hear that she'd have to wait 2 more days, so Steve got on the phone and got her surgery pushed up. He is her biggest advocate and knows the "hospital game" pretty well. He has had 4 years to get good at it.

Dana is still being fed through the N-tube, so she is getting her nutrition. She is also on pain medication which at times does little to make her comfortable. Her counts are still good and her temperature has stayed at around 98-99 degress which is good. If she had a temperature, she would be unable to get the trache done, so the doctors are monitoring this closely.

The ENT said that the surgery from start to finish could take up to 2 hours. I will try to stay in contact with several point people and they will in turn call others. Also you can call the room (732) 253-3323 but I am unsure if Dana will stay in the same room after surgery. I can always be reached on her cell phone too.

Please know that at this time Dana is not receiving fresh flowers, plants or fruit at the hospital or at home. Due to the high risk of infection, the doctors are also limiting visitors.

Linda

Wednesday, September 10, 2003 9:30 AM EST

Hello Everyone,

I'm sorry for not updating last night. Monday night, Dana had another bad episode in the hospital. Her breathing tube accidentally slipped out of her trachea several inches which caused her a great amount of pain and understandably, made her panic. Steve went to the hospital a little after midnight just to make sure Dana was being well taken care of. By the time, he arrived at the hospital, the doctors had put the breathing tube back into place (quite forcibly, I might add). Dana wasn'y doing very well and Steve said she looked like she had gone ten rounds with Muhammed Ali.

Just think, friends, Dana is breathing through a very thin straw. She is hooked up to a ventilator and every time she moves, even a little, the tube moves inside her throat and trachea (is that the same thing?) and causes irritation and pain. It is horrible and Steve and I see the unbearable pain in her eyes, and still she bears it. (I really don't know how. God bless her spirit!) So even if moving just a little bit causes pain, imagine what she experienced when the tube slipped out and then having it pushed back in??!! It was horrible! So Steve stayed with Dana until she calmed down and came home around 2am. He and I were back in the hospital by 10am.

Now an update on yesterday's visit with Dr. Germino and Debbie Goldman (Dana's Cancer Fighting Duo). They stopped in yesterday morning to discuss with Dana and Steve a couple of options they had at this time. (I'll try to explain this the best I can.)

Breathing - Dana has an obstruction in her throat. It could be the tumor itself or the tumor pushing on the side of her throat causing a blockage. She needs to breathe and right now the tube is opening up the blockage and allowing her to get air in. If they take out the breathing tube, the obstruction may again prevent Dana from breathing. Her options are to stay in the hospital with the breathing tube hooked up to the ventilator or get a tracheotomy done so that she can breathe on her own. Her lungs are very strong so once the trache is in place, the doctors will assess her breathing and once she is breathing on her own, she can go home. This is her main objective at this time. She wants to be able to see her girls soon, and she does not want them to see Mommy hooked up to all these scary machines. The trache would be the least scary.

I will have Dana's cell; I forgot the charger to mine. Please call me on it if you have any questions. I really have to run to the hospital now, but there is more to update you on so I'll write again this afternoon I promise.

Love,
Linda

Monday, September 8, 2003 11:23 PM EST

Hello Friends,

Dana did not have a good night last night at the hospital. The breathing tube was very uncomfortable and she was unable to sleep or get any rest. By the way, I need to make a correction to yesterday's journal entry. Dana's breathing tube is hooked up to a ventilator but she is not dependant on the ventilator to breathe. The breathing tube is actually pushing the obstruction aside so that oxygen is allowed through her air passageway. She does the majority of her breathing on her own. Sorry for the misunderstanding.


When Steve and I saw Dana this morning, she looked exhausted but happy to see us. She starting writing endless notes asking about Lindsay and Casey and telling us all about her restless and exhaustive night at the hospital. She told us of noisy hospital machines, busy ICU teams answering several blue code alerts, careless interns with no bedside manners, and the painful and unsuccessful attempts at drawing blood from her tiny arteries located on her tiny wrists. Through all this, she just shrugged, smiled weakly and posed defiantly showing us her bicep determined to continue her battle with the Beast. It is this relentless, unwavering spirit and great sense of humor that makes Dana the brave woman we know, admire, and love. As she continues her fight, we will continue ours with our love and prayers.

Dana also had the N-Tube placed through her nose into her stomach so that she may be fed and nourished. The last time she ate was Friday (if you call drinking cans of Boost or Ensure eating). She was feeling hungry today and was looking forward to getting something in her stomach. After the painful and frightening experience with the insertion of the N-Tube and after some inital nausea due to her chest congestion, she was able to receive nourishment at around 6:15 this evening. She was also given the Ativan which helped relax and get her groggy enough so that she could start dozing.

Dana and Steve met with several doctors and specialists today and were advised that a tracheotomy may be the best option for Dana at this time. A tracheotomy would allow Dana to breathe, speak, eat, feel more comfortable, and get a better quality rest while at the hospital. Dr. Germino and the ENT surgeon need to consult first and then upon Dr. Germino's approval, the surgery would be done. We are unsure as to how soon it could be done, but they are hoping by the end of the week.

I will update more again tomorrow night. Thank you for all your prayers, messages and support.

Good Night,
Linda

Sunday, September 7, 2003 10:07 PM EST

Hello Everyone,

This is Linda. Last night around 2 a.m., Dana began to have great difficulty breathing. Steve called 911 and an ambulance arrived promptly. Dana's air passageway was being obstructed by something, and she had difficulty breathing and could not swallow. As you can imagine, Dana was in a state of panic, and this did not help her breathing or heart rate very much. The doctors told Steve that they would have to do surgery to insert a breathing tube either down through her mouth or directly through the trachea. At 6 a.m., they prepped her for surgery to insert the breathing tube but found that they were able to insert the tube manually afterall. The doctors said that the tube may be removed either tomorrow or the next day.

Dana is very weak and is unable to speak because of the tube inserted in her mouth, but she has been alert and has written messages for her girls and tons of instructions for Steve and me. Always The Mom!! God Bless Her! She even called this evening to hear her girls' voices. They told her that they loved her and missed her, and she beeped on the phone back to them. Steve and Dana set this system up for communicating. They are so in sync with each other; it's uncanny! I wish you all knew them the way I do. Their love is something to behold and their trust in each other is unwavering and unpenetrable. God Bless Them Both!!

Since Dana is in ICU and unable to speak, she is unable to accept any visitors. Steve is the only one allowed in to see her. I will continue to update as I get more information. I will remain here until Dana is strong enough to throw me out herself. :)

God Bless you all for your love and support of Dana. Keep your prayers and messages coming! I'll read them to her over the phone or send them with Steve so he can read them to her. They'll definitely cheer her up!

With all my gratitude and love,
Linda

Thursday, September 4, 2003 7:26 PM CDT

Hi all,

Sorry I haven't updated. I have been so tired that I have not even had the energy to type. I went in for chemo Wed. and waited about 3 hours to get it. Once I got it, I had a reaction and everything had to be stopped. I receved oxygen, an EKG, benadryl and some steroids to help. We went back this morning and they gave me some heavy duty premeds and then started the infusion again at a very slow rate. So I got it! So far I feel good, just tired as usual. It could be from the pain patch or the tumor itself. Nothing else is realy new. The pain is stable and my eating is still not good. I will update when I have new news. Thank you all again for your engouraging messages, notes and phone calls.

Love,
Dana

Saturday, August 30, 2003 6:33PM EST

Hi Everyone,

I met with Dr. Germino yesterday. I will be starting chemo on Wednesday and will continue to get it once a week every 3 weeks. My counts will drop, so I'll be taking the Neupogen again for 10 days after starting chemo.

I am still experiencing partial paralysis on the left side of my face. My swallowing has gotten better, but I do not have much of an appetite and have lost more weight. My pain is being managed, and my energy is good some days.

There is also a discharge coming out of the tumor signaling that part of the tumor is dying. You would think that this is a good thing, but Dr. Germino says that this is not because the tumor is continuing to grow around the dead part of the tumor. This dead tissue can cause infections and lead to further complications. Dr. Germino also confirmed that the tumor has gotten larger since our last visit.

We are not sure what effect the chemo drug will have on the tumor, but we hope that it will shrink it. Dr. Germino thinks that since the tumor is very aggressive the chemo will work just as aggressively. This would be great because so much of my pain and discomfort would be relieved. He also is unsure if the paralysis will end once I start chemo. Right now, we just have to wait and see.

Thank you for your messages and prayers.

Love,
Dana

Tuesday, August 26, 2003 11:01 EST

Hello,

The good news is that my swallowing is better! I am having no problems swallowing liquid and little by little, I am eating more solids. The bad news is that there is some paralysis on the left side of my face. It is affecting my eye, lip, smile, etc. It seems that the tumor is pushing on the facial nerve and causing these problems.

My energy has been pretty good these past two days, but it has been very upsetting to have more problems arise as other things get "better." It just does not seem like I can get a break!

With each day it gets more and more difficult, but I try to take things day by day or moment by monent sometimes.

So many of you have offered to help, and Steve and I really appreciate it, but we are just not sure what our needs are as of yet. When I start treatment (hopefully next week), we will know what we need help with, and we promise to let you all know.

Thank you all again for your support and messages.

With love,
Dana

Sunday, August 24, 2003 7:23 PM CDT

Hi,

The last couple of days have not been so great. I have a couple of new problems to deal with (what else is new?). Yesterday, I woke up and had some trouble swallowing my pain medication even though they are small pills. I did get them down eventually. As for the horse-sized antibiotic pill, I had great difficulty swallowing it so Steve had to get me a pill crusher. After he crushed the pill, he mixed it with a little pudding, and I was able to get it down. Unfortunately, the pain meds cannot be crushed because they are time released.

Today, the swallowing continues to be rough but I am managing to get water and Boost shakes down. I have not eaten any solids for quite awhile. When I do manage to get them down, the little that I do can by no means be considered a meal. I know nutrition is important so I am forcing myself to get food down but that is kind of difficult when you find you have no appetite.

Yesterday, I also noticed that my left eye was twitching a little, and it felt a strange. Tonight, Steve and Linda noticed that my left eye was not blinking as much as the right and that it was a little droopy. It is also getting very watery because I am not blinking as much as I should. I believe that the tumor is pushing on the facial nerve because the same thing happened when I had my last surgery. My eyesight is not affected as of yet, but it is uncomfortable.

The pain control is pretty good. The last couple of days I have not had to take any breakthrough medication for the pain, but I am still taking the 12-hour time-released pain medication twice a day.

I called Dr. Germino today to inform him about my latest problems and worries. The first thing he wants me to do is go on a pain patch that will control the pain for 3 days straight so I don't have to worry about swallowing the pills. As for the swallowing issue, he wants me to have a swallowing study done -- this is where dye is injected directly into my veins and an x-ray is taken at the same time to see what is going on. They may be able to determine why I am having problems swallowing. Is it the tumor or the nerve? [These are two possibilities.] And from there we will determine what to do. He also mentioned the feeding tube again in case I continue to have trouble swallowing. As for the eye, he thinks it may be a facial nerve, but for now I am thinking about calling my ENT at Sloan Kettering and asking him for his advise.

My energy seems to be getting better. I am sleeping a lot more than normal but when I awake I do feel energetic.

Linda and Gene did arrive on Friday, and Linda is staying this week to help out. She continues to be a great support to all of us, and we are blessed to have her in our lives.

I enjoy reading all your messages. I find them so encouraging and they support me so through these hard times. Look forward to hearing from you all.

Love,
Dana

Thursday, August 21, 2003 8:05 PM CDT

Hi,

I have been feeling a little better these past 2 days. The pain is under control and I can focus much better. The tumor area is still very enlarged and red. It may be slightly less red but has not changed significantly. I am thinking that it may just stay this way until I have some treatment to shrink it. I have been sleeping pretty good and feel very rested throughout the day. I have not really left the house since I came home from the hospital but I am OK with this. I think tomorrow or over the weekend I will venture out. I still have NO appetite yet and chewing is very uncomfortable. I've lost some weight but I am sure once the appetite comes back, I will find it! Linda and Gene are coming again this weekend and Linda is going to stay with us next week. I'm so glad she will be here expecially because the kids will be home and she can give me a hand with them. There is really nothing else to report at this time. Tomorrow I will be finishing up my IV antibiotic and then I will start the oral antibiotic. Next Friday, I will see Dr. Germino and we will discuss further treatment.

Lots of love,
Dana

Monday, August 18, 2003 9:17 PM CDT

Hi there,

I'm sorry that I have not updated in the past few days. This is the first time that I came home from the hospital with problems. Usually I feel weak and it takes me some time to regain my strength but this time I have pain and this huge tumor on my face. The pain is under control with a time released narcotic (Oxycontin) and I am using Oxycodone for the breakthrough pain. The dose has more than tripled since entering the hospital. I have never had this much pain before. It is very scary having this pain, knowing that it is coming from the tumors pushing on nerves and interfering with normal stuff. This morning I woke up with very little pain. I guess the higher dose of the oxycontin is kicking in. I think the tumor is slightly less red but it is hard to tell when seeing it every day. It is just so big and uncomfortable in so many ways. Casey kisses my "boo-boo" and tells me if she keeps kissing it will go down. Lindsay says she doesn't like it and it is gross looking. I don't blame her, I don't like it either and think it is gross! Today was my first day alone. Linda and Gene left yesterday and we were all sad to see them go. They are the best friends anybody could ever ask for. They are truly blessings from God. My day started out OK since I was not in pain when I awoke. Steve took the girls to camp so I helped get them ready in the AM. I am up anyway to do my 6am infusion of antibiotics. After they left, I layed down for a while and drifted back to sleep. I then spend several more hours resting and talking on the phone. Later in the afternoon, Steve and I went to CINJ for an appointment with a Phase I clincal trial doctor. I will briefly explain what a Phase I trial is for people that don't know. It is an experimental drug that is being tested on humans for the first time. It is being tested for it's effectiveness and toxicity. We went to the appointment because this type of treament is an option. The other option is going with a chemotherapy that is approved and known to have worked on my type of cancer. There is one left which is adriamycin or doxil. I am probably going to go with this one first. If it doesn't work or it stops working, I can always switch over to a Phase I trial. The appointment was informative but I also have alot of reading material. After I read more about the trial, I will post the information. What I can tell you is that it is a chemotherapy agent and it will affect my bone marrow. In my next entry, I will provide more detail. As for the rest of the week, I am going to take it easy since the kids are in camp. This is their last week, then they are home for a week, then back to school. I can't believe it. Lindsay will be in third grade and my baby Casey is starting Kindergarten. They both have enjoyed the summer but I know they are looking forward to going back.

Thank you all for the entries in the guestbook. While I was inpatient, Linda would print them and bring them to me and some nights Steve and I would go to the computer in the hospital and read them together. I really appreciate each and every one of them. They made me feel surrounded with love and some of them even gave me a chuckle. Thanks again and keep them coming.

With love,
Dana

Friday, August 15, 2003 12:49CDT

Great News Everyone!!

Dana is coming home! She saw the doctors this morning, and she will be getting home healthcare in the form of IV antibiotics so that she can administer the shots herself at home. (Most people don't like doing that themselves and opt for a longer hospital stay but you all know Dana, she is braver and stronger than most.)

Last night, she slept well and even slept "late" this morning. She did not experience high fevers yesterday and the site of the tumor is actually looking a lot better today. Dana's pain continues to be managed; she is presently on 15mg of Oxycodone every 3-4 hours. However, she has been experiencing occasional shooting pains in her left ear. She believes it may be due to the tumor's close proximity to her ear canal. Imagine, it is like a bad ear ache that just won't go away; it is most uncomfortable.

In summation, Dana is well enough to come home, but she needs a lot of rest and needs to continue the IV antibiotics at home. So even though, there has not been a dramatic change in her overall condition, she is better. This is an aggressive cancer, but Dana, Steve, Dana's doctors, and our prayers are fighting hard and just as aggressively against The Beast.

All my love and gratitude to you all,
Linda

Thursday, August 14, 2003 11:18AM EST

Hello Everyone,

I have great news! Dana saw the doctors this morning and they said that she is getting better and that if she gets enough rest today, she may be able to go home tomorrow!!

As I wrote yesterday, her pain is being controlled and her temperature has remainined moderately low. She will be going home to continue the IV antibiotics for a couple of weeks to make sure the infection is completely out of her sytem. Dana will also be meeting with several Infectious Disease doctors in order to help prevent future infections and debilitating fevers.

The preliminary MRI results have found that there are no pus pockets located near the site of the tumor, and, therefore, there will be no draining done. Final MRI reports will likely be available early next week.

As for what we can all do right now... we can continue to love Dana and pray for her. I believe it is working, and I ask you to keep it coming. :-)

Thank you,
Linda

P.S. I urge everyone who is hoping to visit Dana today to call her ahead of time or postpone the hospital visit for a home visit next week so that we may give Dana the chance to get that much needed rest that will get her home faster.

Wednesday, August 13, 2003 12:36 AM CDT

Hi again,

I'm trying to be better about updating Dana's journal. I know so many of you are eager to know what is going on with her.

Last night, Dana slept straight through the night. She said it was a "good sleep." The pain medication is working and keeping the pain at bay, but she is still sore, stiff and achy. The good news is that she has not experienced a fever since last night.

This morning Dana also had the MRI, and she should receive some initial (but limited) feedback by tomorrow morning and get a more thorough report in a couple of days. This morning, Dr. Germino told Dana that the results of the MRI would also determine if there is any pus or fluid present near the site of the tumor. The doctors are considering doing some local draining to relieve the pressure and some pain. This has still not been confirmed, but they are looking into the possibility.

Dr. Germino said (but did not promise) that Dana may be home by the end of the week or the weekend.

As you can all see, the power of your love and prayers is helping Dana a great deal. Keep them coming.

Thank you,
Linda

Tuesday, August 12, 2003 10:44 PM CDT

Hi Everyone,

Sorry about the late night update. This afternoon, Dana underwent the Mugascan, which scanned the left ventricle of her heart. This scan was necessary in order to prepare Dana for the new chemo drug. They were unable to conduct the MRI because the hospital's only MRI machine was down. Dana's temperature was good all day but then spiked up again in the evening to 100.5 degrees. This constant low-grade fever is of great concern to the doctors because of Dana already having a very compromised immune system. It is also evidence that the infection is still present.

As always, Dana is taking everything in stride and keeping up her strong and positive resolve. She read all your guestbook entries and was delighted to hear from all of her family, friends, and supporters.

There is no news as to when Dana will be going home. As you can imagine, she is eager to be home with Steve and her girls. Keep those prayers, love, and support coming.

Thank you,
Linda

Monday, August 11, 2003 9:55 PM CDT

Hello Everyone,

This is Linda (Dana's friend). Dana was not doing well this weekend due to her high fever and pain. Because of this unexpected emergency, I decided to stay on and will be here for the rest of the week (at least until Sunday). This morning Dana awoke with more pain and she still had the high fever, so Steve took Dana to Robert Wood Johnson and she was admitted in the afternoon. Her phone number is (732) 253-3536. She is getting IV antibiotics every four hours. The dose of the oxycodone and oxycotin have been increased, and her pain is being managed. She is also getting saline fluids to help keep her hydrated. All her counts are fine, and now we are just waiting for the infection to be controlled. I am not 100% sure, but they may do the MRI, CT scans or mugascan at the hospital tomorrow. I will provide you with more information as I get it. If you are considering visiting Dana, please call her ahead of time because she may be having these tests run and they may take a long time.

Thank you for your constant support and prayers. Keep the prayers and good wishes coming. I read all your guestbook entries to Dana, and they cheer her up a great deal. Keep those coming too!

Linda

Saturday, August 9, 2003 8:30 PM CDT

Hello Everyone,
I went to see Dr. Germino yesterday. The news was not good. Since the cancer seems to be progressing, I am stopping Navelbine and may be starting Doxil or Adria in a couple of weeks. The major concern now is whether or not I can tolerate these new chemo drugs because they are more toxic and I have had a lot of prior chemo. If I can tolerate it and it works, the doctor does not feel they will work for very long. Next week, I am due for an MRI, CAT Scans, etc. to see what is going on inside. Over the last few days, the pain in my neck has increased considerably and it has become hard to sleep, turn my neck, chew, move my shoulder and I am also experiencing ear aches. Right now, all the doctor can do is prescribe me pain medication to relieve it. As you can imagine, this is very difficult for Steve and I to comprehend and absorb. Thank you all for your prayers, birthday wishes, cards, gifts and most of all, support. It means so much to me. Please continue praying for me and supporting me through this. Having you all in my life makes each day a little easier and I don't feel so alone in battling this beast.
Love,
Dana

Friday, August 1, 2003 4:10 PM CDT

Hi,

I'm so sorry that I haven't updated in a while. Everything is about the same as far as the swelling on my neck goes. It is still there and is very big. The doctor wants to give it a couple of weeks to see if the swelling goes down before doing a MRI. He said that the MRI will not distinguish between tumor and enlarged lymph nodes. This may lead us to make a premature decision about changing chemotherapy drugs. Since I have had so much chemo in the past and I don't have very many options left, he thinks the best thing to do is stay on the Navelbine and wait and see. It's a very difficult place to be right now. It is horrible to live with the waiting and the unknown. If I have to change chemos, I will probably go on a more toxic one and the quality of life will not be so great. It is very scary since there are not many chemos left and surgery and radiation are no longer options. The pain has been under control since I am on a time released pain medication. I have been feeling good and my energy level is great. That's the update for now. Thank you for checking in on me. Please sign the guestbook. I love reading the entries!!!!!
Love,
Dana

Wednesday, July 23, 2003 5:11 PM CDT

Hi,

I got my chemo today and saw Dr. Germino for a minute. My neck is still very swollen and red so it is bugging me. I also seem to have pain now. He said because the swelling in on top of a tumor it could take another 2-3 weeks to go away. We are just hoping that is all it is and not tumor growth. If it does not go away by then, we will do a MRI to try and see what is going on. I will see Dr. Germino for an office visit this Friday and I will update after that.

Thank you all for your support and please sign the guestbook.

Love,
Dana

Thursday, July 17, 2003 1:39 PM CDT

Hi,

I'm not sure if all of you heard that I was in the hospital. The left side of my neck (where the large tumor is) swelled up. I then had chills and a fever so I had to be admitted for IV antibiotics. I went in last Friday and came home Tuesday. Home health care delivered supplies so I can give myself the IV. I have to do it for 10 days, 3 times per day. It sure beats being in the hospital. I am feeling better and regaining my strength. As for the tumors, I have no idea what is going on with them. With the swelling around the one on the left side, I can't tell if it is bigger or smaller. Next week, when I see the doctor, I will ask when he thinks we should do scans, etc.

Please keep sending those prayers and please sign the guestbook. I really enjoy reading the entries.

Love,
Dana

Wednesday, July 9, 2003 4:50 PM CDT

Hi all,

Today I went to CINJ for chemo. I've been having some neck discomfort and soreness near the tumor site so I saw the doctor today. We think it may be an infection. It is very red, hot, swollen and painful. He put me on antibiotics so hopefully they will kick in soon. The doctor talked about putting chemo off for a few days but then together we decided to stay on schedule. So, today I received round 5.

I will update in a few days to let you know what is going on.

Thank you all for signing the guestbook. It gives me a "lift" to read all the entries.

Love,
Dana

Thursday, June 26, 2003 4:44 PM CDT

Hi,

I was able to get my chemo yesterday. Yippee!! My counts are very good and they recovered on their own without any shots this time. I am feeling pretty good and trying to enjoy each day with my kids. Not much else to update at this time.

Dana

Thursday, June 19, 2003 12:32 AM CDT

Hi,

Tuesday I had blood work done and my white count is down so I must be careful. Yesterday I went to see Dr. Chang in NYC. He said as long as the chemo seems to be working, we will just stick with what we are doing. He doubled the dose of the Vitamin D3 and the Celebrex. He also gave me lists of things to cut out of my diet. It seems as though everything I love is on that list so it will be hard. He just said to try my best. Tomorrow is the last day of school ! I can't believe it. Lindsay will be going to camp every other week which will start in July. I am looking forward to spending some time with her this summer. That's all for now. Thanks for checking in and please sign the guestbook.

Love,
Dana

Friday, June 13, 2003 10:57 AM CDT

Hi,

Just a quick note to let you all know that I DID receive my chemo this past Wed. My counts were good and am feeling pretty well. This was just my third treatment and my tumors on my neck are shrinking. Thank you God! Tonight is Casey's debut in The Little Mermaid. We are all very excited for her. Next Wed. I go back to NYC to see Dr. Chang. I will update after my visit to let you know how it went.

Till then...
Dana

Wednesday, June 4, 2003 8:07 PM CDT

Hi,

Today Steve and I went to see a doctor who practices alternative and complementary medicine. He is a medical oncologist who at one time practiced at Memorial Sloan Kettering in New York City. Here is the link to his practice if you would like to read more about him:

http://www.meridianmedical.org/about_us/about_us.htm

The doctor recommended a few things that I start with.

(1) High dose Celebrex-
On my last regimen I was on this, but it was a lower dose. Celebrex is a drug usually prescribed for pain but it has shown to have a angiogenesis effect on some cancers. This means that it inhibits blood vessel formation which cancer cells need to grow.

(2)Tagament - Usually prescribed for stomach problems. This also has an angiogenesis effect.

(3)Zocor- Is a cholesterol lowering medication. He said high cholestorol (which I have) can play a part in "feeding" the cancer.

(4)Vitamin D3 - Has a similar effect as the celebrex.

(5) Wormwood - This is a non toxic chemical derived from the Chinese wormwood plant called artemisinin. It is highly toxic to some cancer cells but has no impact on healthy cells.

I am going to start with these 5 supplements along with the chemotherapy (Navelbine) that I have been taking. I will see him again in 2 weeks and he will probably add more to the cocktail.

All of these drugs are safe to take and have little or no side effects and will not interfere with my chemotherapy. I have nothing to lose so I am going to give it a try.

Good news...I think the chemo is doing something to my tumors. My neck feels softer and the large tumor behind my ear looks smaller. I know I have only had 2 doses but I really see a difference. I have not had any side effects from the Navelbine except for fatigue.

Non cancer issues - We got a minivan! This is my 2nd brand new car and I just love it. Steve's station car finally went so he got my 10 year old car and I got the new one!

Casey's dance recital was a big hit. She loved being a star on stage. My friends had a fundraiser for us and two other families affected by cancer. It was a huge success. Thank you all who contributed. We have been blessed with some wonderful friends and family members and we want to thank each and every one of you from the bottom of our hearts.

That's it for now. Thank you all for your prayers. Keep them coming and please sign the guestbook when you check in.

Hugs and love,
Dana

Thursday, May 29, 2003 1:54 PM CDT

Hi all,

Time for an update. My counts were good yesterday and I did receive my chemo. So far, I am feeling good. The doctor thinks it will be best for me to get the chemo every other week instead of 2 weeks on and one week off. My body will probably tolerate it better. I will see the doctor next Friday for an office visit and blood work and then the following Wed. for chemo. In the mean time, I will take the neupogen shots to keep my WBC up. That's all for now.

Till next time....
Dana

Thursday, May 22, 2003 9:28 PM CDT

Hi,

It's been a long time since I updated but I thought I was ready to begin this journal again. Since March, 2002, I've had another relapse, then surgery to remove it, more chemo, etc., etc. Currently I am on Navelbine. I started last week. It calls for 2 weeks on, then 1 week off. I couldn't get it this week because my counts were too low. My ANC needs to be over 1000 and it was 410. So I am on neupogen shots to raise the white count and then we will try again next Wed.

Most of you know that I was in the hospital for 5 days with a swallowing problem. We were very scared since nothing like this has happened in the past. I spent the first 16 hours in the ER and then 4 more days inpatatient. They were not exactly sure why this happened. It could have been an infection or something like that. It was just very scary and I'm glad it resolved itself. They were talking feeding tube and I was freaking.

I'm feeling much better now and regaining my strength. Thank you all for your prayers.

Love,
Dan

Monday, March 18, 2002 at 08:11 PM (CST)

Sorry I haven't written in a while. Things are going well. I did have laryngitis again which really sucked! I called the radiation oncologist about it and he doesn't think it has anything to do with the radiation. I think he is wrong! Next week I am going to the ENT to see what she thinks. I am working quite a bit these days and it feels great! We had Lindsay's birthday party this past weekend and it was great! This house looks like Toys R Us! Linda and Gene came this weekend for the party. It was great to see them as usual. I won't be updating the journal as much since I am now post treatment and in remission.
Thanks for checking in.
Dana

Friday, March 01, 2002 at 05:30 PM (CST)

I'M IN REMISSION!!!!

The pet scan was totally clear. As of today, there is no measurable disease in my body. Dr. G told me I should be optimistic and get on with my life but at the same time be realistic and know that I am at a high risk for recurrence. We had a good chat and at the end we said "See ya in 3 months." That felt so good. I have 2 days left of torture, oh I mean radiation, then I am done with CANCER. I have now beaten the beast and I am going back to my boring life here in Metuchen, NJ. The doc said to ease back into work and not stress myself out. Do you hear this MDO people? No stress, doctors orders!!! Ha ha. Like that's gonna happen. Tonight I told Lindsay that the doc said I was all better and she said "Does this mean your hair will come back faster now." We are celebrating with a cake tonight and then I am off to scrapbook with the girls. Tomorrow we are going out to dinner to officially celebrate. I thank all of you for your help and prayers. I couldn't have done it without all the great support from my friends and e-mail buddies.

Love,
Dana

Monday, February 25, 2002 at 05:46 PM (CST)

THE GOOD NEWS IS......

My CT of the neck, chest, abdomen and pelvis is clear. There is NO measurable disease at this time and hopefully there will never be. I am having a PET scan tomorrow which I hope will be clear as well. I should have the results by the end of the week. I am also seeing my medical oncologist Friday to discuss what comes next. I believe I will be finished after radiation and I can get on with my life. I am looking forward to going back to work. Thank you all for being so supportive. It means the world to me. Please sign the guest book each time you visit so I know you were here :) Thanks

Love,
Dana

P.S. 6 days and counting.....

Friday February 22, 2002 5:30 PM CST

Seven rounds to go!! I am doing good so far. My mouth is getting dry but it is not too bad yet! Today was a very special day for Lindsay. This morning she was in a President's day assembly at school. I went to see her and she did terrific. She remembered all her lines. Then her class sang "Proud to be an American." It was very touching. Tonight she was off on a date with Dad. She went to a Daddy/daughter dinner dance. She got all dressed up and I put makeup on her, did her hair and polished her nails. She looked gorgeous. I will post the pictures when I get them back. I am planning on going to work tomorrow. I hope I make it. Have a nice weekend.

Love,
Dana

Thursday February 21, 2002 9:54 AM CST

I had my CT scans of the chest, abdomen, pelvis and neck today. Hopefully I will know the results by Monday! The anxiety sets in...I have 9 more treatments of radiation left. I have been having a reaction to the amofostine. I've been getting fever and chills every night. The doc thinks it's the drug. Anyway, I just take tylenol and that helps it. I was worried that I was getting sick again. Thank goodness NOT! That's all for now.
Love,
Dana

Sunday February 17, 2002 5:25 PM CST

I can speak!!! Finally after 2 weeks or so, I can talk! We had a nice visit with Linda and Gene this weekend. The plan is to start radiation again tomorrow. I have 13 treatments left. My throat has healed since I haven't had the radiation but I'm sure after a few treatments it will be sore again. I have been eating pretty good. I just have to chew well and eat slow. That's the update for now.

Till next time..
Dana

Thursday February 14, 2002 5:22 PM CST

I was finally able to speak today, but then I lost my voice again. I went to work today and went out to lunch! I did pretty good and was able to taste most of my food. Lindsay has off from school tomorrow so I figure us girls will catch a movie. Linda and Gene are coming for a visit this weekend so I am excited!! Talk to you all soon. Keep signing the guest book. I really love reading the messages. It cheers me up!

Wednesday February 13, 2002 5:19 PM CST

I went to see Dr. Kumar today and the good news is nothing is wrong with my throat. He scoped me, using a numbing solution so the pain was not too bad. It is very sore and swolen due to the radiation but that is all very normal at this time. He did not see anything wrong with my throat or vocal cords. He just assumes it is a bad case of laryngitis. He gave me the rest of the week off from radiation. If I am better we will start on Monday. There is nothing I can do but wait for this to get better on its own. Otherwise, I am feeling pretty good. I have a lot of energy. It is just very frustrating not being able to speak. My throat is still very sore but I am able to eat some solids. That's it for now. Happy Valentine's Day to all.

Love,
Dana

Monday February 11, 2002 1:52 PM CST

I now cannot speak at all. My voice is totally gone. The rest of me feels OK. I went to radiation and saw the doctor. First he said that he never has seen this in anyone before. Then he examined my throat and could not see anything wrong with it. He sees the pain I am in and hears my voice so he knows there is a problem. He is giving me today and tomorrow off and will re-evaulate me on Wed. If I am all better Wed., he will go ahead and give me the treatment. If I am not better he will scope my throat. That is when they shove a small tube with a camera on the end of it up your nose down your throat so they can see what is going on. It is quite painful and I am sure it is even worse with all the tenderness in my throat now. He doesn't want to have to do it because it will irritate my throat even more, but it may be the only way that we will find out what is going on. I am getting worried now. I don't need any other problems. I'll update on Wed. again and let you know what happens.

Love,
Dana

Thursday February 7, 2002 5:20 PM CST

Sorry that I have been so bad with updating the journal. This FLU has really knocked me out. The Radiation doctor gave me Thurs. and Friday off from radiation so that I will have a 4 day weekend to get better. My cough seems to be getting worse so I called the nurse today. After talking with the doc, they have decided to put me on an inhaler and see if that brings me any relief. They do want me to come in tomorrow just to check my counts. My white count was a bit low this week so that is the reason they want to check it again. My chest x-ray came back clear. It is probably a combination of things including the radiation making me feel so miserable. Today I slept most of the day so I don't feel as fatigued as I usually do at this time.

Till next time...
Dana

Sunday February 3, 2002 6:04 PM CST

I am again battling the flu or some nasty infection. Friday night I was up with the chills and a fever. Saturday, I did not leave my bed all day. And today I am feeling a bit better but I still have a low grade temp. The doctor called in an antibiotic for me. It seems that I don't get a break. Just as I am feeling good again, I get sick. I'm not sure if I will get treated tomorrow. It all depends on whether or not I have a fever. I really hope I do not have to put treatment off. The side effects from radiation are really setting in now. My throat is very raw. It is extremely hard to swallow solids without pain meds. I have been drinking boost shakes and tea all weekend. It even hurts to swallow liquids. I read that some patients have to get a feeding tube placed during radiation. I hope I don't have to!! That's the update for now.

Till next time..
Dana

Thursday January 31, 2002 8:04 PM CST

Day 9, so far so good. I am experiencing dry mouth and sore throat. I am taking pain meds and rinses so it is not too uncomfortable. My appointment has been changed to the afternoon. I feel much better in the AM so I am happy about this. I went to work this morning and it felt great. I am going to try and do this as much as possible. It is good for my well being plus it helps my coworkers out as well. Not much else new to report.

Till next time...
Dana

Sunday January 27, 2002 2:41 PM CST

The first week of radiation went well. The only side effect so far is fatigue, a little stomach upset and dry mouth. The dry mouth is not severe yet. They tell me that will happen around week 3. I am tolerating the dry mouth drug pretty good. It does drop my blood pressure about 10 points so they hydrate me a lot before they give it to me. This usually makes my pressure go up a bit so I don't drop too low.

I had a visit with Dr. Germino and we talked about chemo after radiation. He really feels that it is in my best interest not to have any chemo if the scans are clear. We had a long talk about it. I am not sure what I will do. I still have plenty of time to make decisions. I will have cat scans of the neck, chest, abdomen and pelvis in 3 weeks followed by a PET scan in 5 weeks. Then we will be able to see what is going on inside ME.

This weekend I am feeling great! My energy level is really high. Yesterday I took Lindsay, Casey and their friend to Build a Bear. They had lots of fun stuffing and fluffing. It was fun for me to watch. The weather was so nice, they played out in the yard for hours.

That's it for now. I will try to update more often.

Love,
Dana

Tuesday January 22, 2002 7:34 PM CST

I started radiation yesterday. The Amifostine (dry mouth drug) was approved so I will be starting that tomorrow. I went to Sloan Kettering to see Dr. Maki today. He pretty much agrees with Dr. Germino on not giving me any more chemo. We discussed it in detail and he is going to consult with his pediatric team and also call Dr. Germino. He says that if I am willing, it may be a good idea to give me a few more rounds. Now they need to decide which drugs, the doses and for how long. There are a few drugs out there that I have not received yet so I think it is better for me to have them now then wait for a relapse to try them. Maki agreed with me. There is no right or wrong in this case. It is just an opinion. Wish me luck with this new drug tomorrow. I hope the side effects are not too bad.
Till next time....
Dana

Saturday January 19, 2002 9:10 AM CST

I am finally feeling better! Yesterday I went to work and I had a good day. I spoke to the nurse at radiation and she is still having problems getting the dry mouth drug approved. However, I am starting Monday. They tell me that it is not absolutely necessary to have the drug for the first few treatments. The side effects from this drug are not so great. They are hypotension (drop in blood pressure), nausea and vomiting. They will give me medication for the nausea and IV fluids to help my blood pressure from droping. Since I have low blood pressure to begin with, the nurse said this may be a problem. I am just glad that I will be starting this next phase of treatment. I am also seeing my doc at Sloan Kettering on Tuesday for a follow up/consultation. I'll let you all know how that turns out. Have a great weekend.

Love,
Dana

Wednesday January 16, 2002 7:43 PM CST

This week has been hell. My little cold turned into a nasty, painful sinus infection, then I got the FLU. I have been so so sick this week that radiation is being delayed. I finally feel a little better tonight.

I got my tooth fixed on Monday, but on Tuesday morning my cheek was swollen and I had terrible jaw pain. I went back to the dentist and he did some adjusting and it is better.

It seems that everything bad is happening to me this week. I've been very down and depressed. I was hoping that I would start the radiation and get on with it. Instead, I've been miserable with colds, flu and infection. I feel like I never get a break. Casey was also sick with a high fever, cough and runny nose. I think my house needs to be disinfected!

I spoke to the nurse at the radiation oncology place and she is in the process of getting the dry mouth drug approved. She should know something by tomorrow. The doctor has decided that I will start next Monday. This will give me a chance to recover from all my problems. I'm happy about that but also worried. I feel like when we delay treatment, there is always that chance of the cancer spreading. But I know it is not a good idea to go into radiation feeling lousy.

I do have some normal,happy things going on too. Friday night we had a surpise scrapbooking/baby shower for a friend of ours. It turned out great! Deb was very surprised and we all had a nice time. Saturday, we went to cousin Nancy's for dinner. Lindsay loves to play with Kimberly. It's been a long time since we saw them so it was really nice.

I really wanted to go to work this week but because of me getting so sick, it didn't happen. I am hoping again for next week.

Till next time...
Dana

Saturday, January 12, 2002 at 08:48 PM (CST)

Sorry I haven't posted in a while. This week was rough. I had an annoying cold that kept me home most of the week. I went to St. Peters for the final simulation on
Friday. I was suppost to start on Monday but because of a tooth in my mouth, I am being delayed. The cap had fell out before surgery and on Friday, I asked if I could have dental work during radiation. The nurse told me I absolutely CANNOT. I can't have any dental work done for several months after radiation. Anyway, to make a long story short, I am going to the dentist Monday to get a temporary cap put in and I hope to start on Tuesday. The nurse said if I have the radiation with the open tooth, I could have permanent jaw damage. I also had another problem with the doctor ordering the medication that can prevent the dry mouth. I will get into that another time. I was not happy with them on Friday. I feel like they are not on top of things and if I didn't bring these things up, what would happen to me? I asked the nurse about other side effects that I might expect. She told me that the sore mouth is going to be incredibly painful. After the 3rd week, I will probably not be able to eat solid foods. They will give me pain meds and rinses to numb my mouth for the discomfort. She also said that it will take at least a month after the radiation before the sore mouth starts to heal. I was not aware that it would be that bad. I was very upset leaving the hospital Friday.

Till next time...
Dana

Monday, January 07, 2002 at 08:30 AM (CST)

I don't really have any new news to report. I've been having some depressing days but I am trying to stay positive and take it one day at a time.

I went to work on Thursday and Friday and it felt good to be doing something "normal" for a change but when I came home I felt a little down. I will be seeing a therapist this week so hopefully that will help me with some of these problems.

The oncologists recommendation at this time is NOT to give me any more chemo after the radiation unless I relapse. I am not sure that I agree with him since this is such an aggressive disease. I am going to call my oncologist at Sloan to see what he thinks. Of course I would be thrilled to be off the chemo so soon but I am also scared that the disease will progress and show up in another organ of my body. This is where I get overwhelmed and I tell myself to take it easy and take it one day at a time.

This weekend was good. We went to a comedy show last night with a few other couples. It was nice to get out and laugh. Today I have a play date for Casey and I. We are going over to Caroloyn's house to scrapbook. Casey is so looking forward to playing with Carly. All morning she has been bugging me about it.

Wed. I am going to the Radiation doc for the simulation. I also have a new set of questions for him. I will update after the visit. Thanks for checking in.

Love,
Dana

Wednesday, January 02, 2002 at 06:45 PM (CST)

I went to see the radiation oncologist today. I will have radiation for about 5 weeks starting next week. First they will do the simulation and then the following week the treatments will begin. It is an every day thing so it will be exhausting. The side effects will be pretty bad. The temporary ones are sore mouth and throat, mouth sores and neck discoloration/burn. The permanent side effects will be dry mouth and loss of taste buds. I had this when I had my nose radiated but it was only temporary. This is very depressing. I can't imagine not being able to taste for the rest of my life. They will give me a medication by IV daily to try and help the dry mouth side effect.

I am planning on going to work tomorrow and next week for a few days. I think this will help me keep my mind occupied.

Love,
Dana

Friday, December 28, 2001 at 06:55 PM (CST)

I have some good and bad news. The good news is that 2 out of 15 lymph glands were positive for tumor. One was the tumor which was 2.5 cm and the other was a node sitting on the nerve next to the tumor. All of the other areas removed were negative. The bad news is that the tumor extended out to the margin which means there is probably residual tumor cells left in my body. The report also states that the tumor has minimal necrosis. This means that the tumor was not dying or dead. It means that the chemo did not work.

The next step is radiation. I will be going to Dr. Kumar, the radiation oncologist on Jan 2 for evaluation.

We didn't get the news we hoped for but I guess it could be worse.

Love,
Dana

Saturday, December 22, 2001 at 02:02 PM (CST)

I am feeling better except for this nasty cough. I am trying another antibiotic once again. I went to the office for a visit yesterday and they did the sweetest thing ever for me. They presented me with a check for two thousand dollars. They collected money from all the employees for me and my family to spend toward cleaning and food services. This is the best present we have every received. We are so very touched that so many people care about us. Thank you M.D. Oppenheim. It is very much appreciated!!! There are no words to express our feelings. Thank you, thank you, thank you!!!!

We are all getting ready for the holidays. Today I am cooking tomato sauce for Steve's birthday and for Christmas day. Linda and Gene are coming for Christmas and then spending a few days with us. We are all very excited about it.

Next week the kids are off from school so I am going to try and plan some fun things that we can do together. Any suggestions?

If I don't post, it just means everything is the same and we are busy with the holidays. I will see the surgeon next Thursday and he will remove the stiches and hopefully have some pathology results for me. I will definitely update after the visit.

Wishing you all a wonderful holiday and healthy and happy New Year.

With love,
Dana

Monday, December 17, 2001 at 08:54 PM

Hi all,

I am doing pretty good. Everyday I am feeling better and better. The swelling has gone down and the pain is better. I am trying to finish my Christmas shopping this week. The kids are really starting to get excited about the holidays. Not much else to report at this time. Happy holidays to all.

Love,
Dana

Thursday, December 13, 2001 at 02:02 PM

Hi,

It's me, Dana! I'm doing pretty good. I still have pain and a lot of numbness and soreness, but I am feeling better every day. Thank you all for your calls, gifts, cards, etc. It means so much to me to know that you care.

I am scheduled to have the stitches out 12/27. I can not drive until then and I can not lift anything heavy for 4 weeks or so. Other than that, there are no restrictions. I am hoping I will feel up to some Christmas shopping next week.

Amy and Kelly came over with a pizza for lunch today. We had a really nice time. I think these little gatherings are good for me. If anybody else would like to get together for lunch or shopping next week, please call me and hopefully I will be up to it.

We are all sad that Linda and Gene are gone. They were more than helpful to all of us and we really as always enjoyed their visit. They stayed until yesterday afternoon. It was nice to have the day with them to chat and hang out. They are planning to come around Christmas time. We are all looking forward to spending the holidays together.

I hope to hear from all of you soon.

With love and thanks,
Dana

Tuesday, December 11, 2001 at 09:03 AM (CST)

Greetings Friends!

I have more good news! Dana is being released from the hospital today!! Steve and my husband, Gene, are going to pick her up and bring her right home. Her estimated release time is 11am, so she will probably be home by 1pm (city traffic what it is these days). Dana will now take over her webpage and update you on her recovery and recuperation. I want to thank you again for all the support you have given Dana and continue to give selflessly. You are all true angels.

Best Regards and Happy Holidays,
Linda

Monday, December 10, 2001 at 09:59 AM (CST)

Hello Again Friends,

Gene and I spent the day with Dana yesterday. She really looks great and her spirits are high! She still misses her girls terribly and hopes to soon be home. We were hoping that would be today but she saw the doctor early this morning and he said that there was still too much drainage coming from the neck. He said that it is very important that all the drainage comes out because Dana could get an infection if it does not. Dana is walking about and getting stronger everyday.

She still hopes to hear from her friends and would look forward to receiving more calls. I know sometimes it may be hard to know what to say to someone who has gone through so much and who must go through so much more, but as long as it comes from your heart it can never be the wrong thing to say. Please take a couple of minutes to say hi to Dana and to let her know you are keeping her in your thoughts and prayers. Her number again is (212) 639-4244. Thank you all again.

Regards,
Linda

Saturday, December 08, 2001 at 11:01 AM (CST)

Hi,

I spoke to Dana a little while ago. Steve is on the way back to the hospital alone. Dana is disappointed because we found out today that Lindsay and Casey were unable to visit her due to their ages and to the fact that they both have colds. The girls are just as disappointed and miss their mom terribly.

As for Dana's physical state, she is sitting up and walking a little bit around her room. She is off the morphine and is now on oral pain killers. Her catheter has been removed and she will probably come off the IV today too. These are all very positive signs.

Dana has been on clear liquids and jello but will be eating solid foods today. Something to really look forward to even though she does not have much of an appetite. She is a little bored and eager to get some phone calls.

I must apologize at this time but I was mistaken about two bits of information on yesterday's journal entry. The incision is 5 inches long and does not run along the jawline. It actually runs from the side of her neck and ends at the front of it. She says it is not too pretty but the nurses have said that they have seen worse. In fact, they said that the incision was well done and that it should heal nicely. I am sure that since her neck is swollen, this must all look pretty bad right now.

I will try to update you all again later on today should I receive any further information. I am sure your calling will certainly add to her spirits especially since the girls will not be visiting and she is feeling down about that.

Again her room number at Memorial Sloan Kettering is 932B and her phone number is (212) 639-4244.

Regards,
Linda

Friday, December 07, 2001 at 08:46 PM (CST)

Hi,

Great News! I just spoke to Dana and she sounds great! The doctor said the operation "went excellent!" The tumor in her neck was completely removed! There were, however, some complications in recovery with the after effects of the anesthesia and Dana had to remain in recovery a little longer. The doctors wanted to make sure that she was O.K. before she was transferred to her room. She is presently in her room and on morphine for the pain. She is in good spirits even though she has not drank nor eaten anything since 12am Friday morning. She is looking forward to the ice chips which she will be allowed soon.

As for the details of her surgery, the surgery was a great success on two different levels. No cancer was found in the bone in the neck despite the fact that the tumor removed was slightly larger than a golf ball. And no nerves needed to be removed despite the fact that one nerve was scraped and bruised by the tumor's large size. She has a 4 inch incision that runs down her jawline and her neck is presently swollen. She has not experienced any pain or nausea and this forecasts a good and speedy recovery.

She will be in the hospital 3-4 days. Her room number at Memorial Sloan-Kettering is 932B and her phone number is (212) 639-4244. The phone will not be turned on till tomorrow morning but I suggest we hold all our calls till after the morning to allow Dana some well-deserved rest. I am sure that in the afternoon she will not only feel up to accepting phone calls, but will also need and welcome the best wishes and cheerful conversations. I have let her know who has called or left messages today and she wants to thank you again for your concern and support.

Thank you all again. I will continue to update you throughout my stay.

Regards,
Linda

Friday, December 07, 2001 at 08:05 PM (CST)

Hello Again,
Steve just called. Dana is still in recovery and Steve is with her. They are awaiting transfer to her room. It is difficult for Steve to call from his cell because the hospital restricts most areas in the use of cell phones. We have not been able to get any further information. I wish I had more to tell you, but we will know more later on tonight and I will update again.
Regards,
Linda

Friday, December 07, 2001 at 06:05 PM (CST)

Hello Friends,
As Dana explained, I will be updating her journal for the next couple of days keeping you informed as to her recovery and well-being.

Dana went into surgery a little before 3:45pm this afternoon. We just received word from Steve that Dana is now in recovery. As to the details of the surgery, I have nothing to report at this time. We will know more in the next hour.

As soon as I get Dana's room and phone numbers, I will post them. For now, we must continue to send her all our love and strength through our prayers. Dana has found great courage and comfort from all your many loving e-mails, messages, cards and gifts. From the bottom of my heart, I thank you for your continued support and love. I'll report back as soon as I have any information.

Regards,
Linda

Friday, December 07, 2001 at 05:30 PM (CST)

Hello Friends,
As Dana explained, I will be updating her journal for the next couple of days keeping you informed as to her recovery and well-being.

Dana went into surgery a little before 3:45pm this afternoon. We just received word from Steve that Dana is now in recovery. As to the details of the surgery, I have nothing to report at this time. We will know more in the next hour.

As soon as I get Dana's room and phone numbers, I will post them. For now, we must continue to send her all our love and strength through our prayers. Dana has found great courage and comfort from all your many loving e-mails, messages, cards and gifts. From the bottom of my heart, I thank you for your continued support and love. I'll report back as soon as I have any information.

Regards,
Linda

Thursday, December 06, 2001 at 04:47 PM

Tomorrow is the big day! Surgery is scheduled for 3:45 PM and I have to be at the hospital at 1:45. Linda will be updating the the site and posting the hospital information. If you would like to call her , please feel free to do so. Thank you all for your wonderful support. I've really enjoyed reading all of the entries in the guest book. I know with all the prayers out there, I will be just fine. Thanks again.

With love and hope,
Dana

Tuesday, December 04, 2001 at 08:41 AM

Everything went OK yesterday at Sloan. It was a long exhausting day. The only problem that I ran into is when I was having the physical done. The doctor discovered that I had a fever of 100.6. Then they decided to stick me again and take more blood for cultures to see where the source of infection is. They called the surgeon and he decided to put me on antibiotics. I feel better already. I still have this nasty cold but I don't feel as crappy as I did yesterday. The next couple of days I am going to take it easy so I am nice and healthy for the surgery. Today the only thing that I have planned is reading at lunchtime at Lindsay's school. This has been planned for a long time and I have been looking forward to it. It should only take a half hour or so. 3 days till surgery!!!
Love,
Dana

Saturday, December 01, 2001 at 09:29 PM

I spent about 7 hours in the hospital today getting a blood transfusion and potassium. Dr. Germino called last night and told me that my red blood count and potassium was very low. He wanted me to get transfused because of the surgery. They probably wouldn't do the surgery if my red count was low. After I got home, we all went out to dinner to celebrate my good test results. For the past 2 weeks I haven't been able to eat very much so it felt really good to have a nice meal. Monday I go for my pre-op visit and pre-admission testing at Sloan Kettering. That's the update for now.
Love,
Dana

Friday, November 30, 2001 at 12:42 AM

THE NEWS IS GOOD! I went to see Dr. Germino and he called for the results of the PET and CT scan of the neck. The PET scan shows the neck tumor only! The cancer has not spread. The questionable area in the chest is clear!!! The tumor is the neck is a little brighter than last time but he is not that concerned with that. The CT of the neck shows the neck tumor unchanged. This means it has not grown or shrunk. We know to the touch that it has shrunk but the scan shows it being the same size. The doctor says it is possible because of the skin and swelling around it. He feels it has definitely gone down. The good news is that it didn't grow or spread. It will be coming out next Friday so it really doesn't matter. He said when we get the pathology report we will be able to determine how active the tumor is and what the chemo actually did to it. I know this is confusing but believe me it is good news. I'm happy today.
Love,
Dana

Friday, November 30, 2001 at 08:30 AM

I had the PET scan yesterday and it went well. This morning I will see Dr.Germino and hopefully we will have some preliminary results. If not, I believe the final results will be in on Monday. As soon as I know anything, I will let you all know.
Love,
Dana

Tuesday, November 27, 2001 at 08:26 PM

I had the CT of the neck today and they had to stick me 4 times!!! I was in tears and furious. I have bruises all over my arms and hands. You would think with all the sticking those places do, they would know what they were doing, right?? After that I went to the mall and got quite a bit of X-mas shopping done. That made me happy. I had the energy to walk around and shop. On my way home I stopped and picked up a turkey breast to cook tonight to go with all the left over stuffing and fixings. Then the stomach thing started BAD! I called the doctor and he said if it didn't get better, he was going to want me to come in to the hospital tonight. He told me to stop eating and drinking for the most part to see if that helps. (I didn't get to eat any of my yummy dinner.) It's still pretty bad right now but I think I can hold out until tomorrow to go and get hydrated again. I really thought it was over since I had such a good morning. I hope I don't have to be admitted. I have NO time to be in the hospital. I have way to much shopping, decorating, wrapping, etc. to do this time of the year. Please pray that I don't have to go in. Thanks for all the messages in the guest book. Keep them coming.

Love,
Dana

Monday, November 26, 2001 at 08:56 PM

I ended up at the Cancer Institute today for hydration just like I predicted. I got 2 bags of Magnesium and Potassium. My levels were dangerously low. The place was packed because it was closed for the holiday so it was a mad house. I was feeling very tired and weak from the dehydration. I got a new sleeping pill today. I am hoping it will work and I can sleep again. Tomorrow I go for the CT scan of the neck. I am not too anxious about it because I feel pretty confident that the tumor has reacted to the chemo. Thursday is the PET scan. This is the test I am WORRIED about! This test will show if the cancer is any place else in my body. It will also give us an idea of what is going on in that questionable area in the chest. Wish me luck tomorrow!
Love,
Dana

Sunday, November 25, 2001 at 06:10 PM

I'm feeling the chemo side effects pretty bad right now. The belly problems are back big time! I'm sure I will have to go to the clinic tomorrow for hydration. I can't eat or drink anything without it going right through me. That's all for now.
Love,
Dana

Friday, November 23, 2001 at 7:13 PM

We had a wonderful Thanksgiving. Linda, Gene and Angelo came and it was picture perfect. We all pigged out and gained 20lbs!

I had my 9th day of chemo today! I can't believe I made it. This is the last chemo before my surgery. I probably won't have any more chemo until after the new year. I am exhausted so I am going to make this short. I hope everybody enjoyed their holiday. Thank you for you continued support. Please keep signing the guestbook. I read each and every entry and it cheers me up.
With love and hope,
Dana

Tuesday, November 20, 2001 at 10:58 PM

Hi,

Sorry I haven't written in a few days. Everything is going just fine with cycle 3. I've had 7 days so far without skipping any treatments. I will get chemo tomorrow, then have off for Thanksgiving and get my last treatment before surgery on Friday morning. My electrolytes and blood counts are all normal! I don't have any stomach problems at this time. The main concern now is my anxiety and sleeping. Next week I have a CT scan of the neck, PET scan and oncology visit. Then the following Monday, I have pre-op testing and Friday is the surgery. I am starting to get anxious with all this going on.

The last few days I have been running around with non-cancer issues such as the dentist, my car breaking down, etc. Fun, fun, fun. I also have started Christmas shopping and tonight I went to a cookie exchange which was fun.

We are so looking forward to Linda and Gene coming for Thanksgiving. I am making the turkey (my first) and stuffing and Linda and Gene are preparing the rest. They are staying the whole weekend. I can hardly wait!

Have a happy and healthy Thanksgiving.

Love,
Dana

Friday, November 16, 2001 at 1:42 PM

Chemotherapy side effects are now setting in. Yesterday I felt like crap all day. I took an Ativan (anxiety drug that makes you sleepy) and slept most of the afternoon away. This made me feel a little better last night. Today I felt a little better but when I came home from chemo the stomach problems that I love so much are setting in. I guess I need to go back to my bananas, rice and white bread toast. I did manage to get to the store to shop for Thanksgiving. That made me feel good! That's the update for now. Hope everyone has a pleasant weekend.
Love,
Dana

Wednesday, November 14, 2001 at 02:30 PM

The last three days of chemo have been pretty uneventful. I still have the pain in my legs though. Thank God for Percocet. Other than that my nausea is very little and my energy is up. I have started my X-mas shopping for the kids. I hope to be done before my surgery. The cleaning lady is here today so I am happy about that. I just love getting my house cleaned. Steve and I cleaned up the clutter last night. I always laughed at people who cleaned before the cleaning woman got there but now I understand. Not much else to report at this time which I guess is good. Talk to you all soon.
Love,
Dana

Monday, November 12, 2001 at 08:10 PM

The surgery is scheduled for Friday, December 7th. Dr. Kraus will remove 30-40 lymph nodes from the left front portion of my neck. There are about 200-300 lymph nodes in the neck. I will be in the hospital no more than 4 days. I will go for pre-admission testing and a pre-op visit Monday 12/3. The risks are bleeding, infection and there is about a 1% chance of damaging the nerves in the neck and shoulder. I will probably need some physical therapy for my shoulder following the surgery. There will be a scar but according to the doctor it will not be bad. I will have a drain in my neck for a few days and the stitches come out after 1 week. Recovery is 2-3 weeks so I should be fine by Christmas. I will be able to start chemo again after Christmas. Linda and Gene are going to stay with us that weekend to help out.

I had chemo this morning. My blood work was fine except for Magnesium again. It was very, very low. It is probably the reason I have been having so much pain in my legs. They gave me two bags of Magnesium today. That's the update for now.
Love,
Dana

Sunday, November 11, 2001 at 12:45 PM (CST)

The PET scan was cancelled. I guess the machine was broken. They will call me tomorrow to reschedule. All that anxiety for nothing..I didn't sleep a wink the night before. I am feeling pretty good this weekend. The diarrhea has completely stopped and my energy level is up. I will start chemo again tomorrow and also have my visit with Dr. Kraus from Sloan Kettering. Wish me luck. Hope you all had an enjoyable weekend.
Love,
Dana

Friday, November 09, 2001 at 06:43 PM (CST)

I went to the clinic today for blood work. My magnesium and potassium levels are still off due to the diarrhea. I saw Dr. Germino today and it seems that my ears are slightly infected so he put me on antibiotics. I feel pretty good otherwise. My energy level is pretty high. Lindsay and I did alot of running around these past two days. Yesterday we went to the movies and saw Monsters, Inc. Today we went out to lunch and ran many errands. I put my wig in for cleaning and a dye job. I am getting it changed a bit. I am having it colored dark auburn brown. Tomorrow is the PET scan so I am getting a little anxious. It is such a long day..I am not looking forward to it!! Hope you all have a nice weekend.
Love,
Dana

Wednesday, November 07, 2001 at 08:27 PM (CST)

I went to the clinic for blood work today and ended up getting hydration. I was upset because I had to stay there so long! Friday I go back again for blood work. The PET scan is scheduled for this Saturday in Princeton. It is a whole day affair. First they take blood to check your glucose level, then you lay still in a quiet, dark room for an hour and then they scan you for about an hour. It's really nerve racking because you have all this time on your hands to think! Then Monday, if all goes well I start treatment again and I also have an appointment with the surgeon at Sloan Kettering in the afternoon. The next few days will be hectic and stressful.
Being ill is a full time job. The past few days I have been feeling very fatigued so I have not been doing much. I also have some diarrhea and stomach cramping. I am able to eat but when I do, it upsets my stomach. I just hope it clears by Monday so I can start my treatment again.
Love,
Dana

Monday, November 05, 2001 at 02:35 PM (CST)

Today I took a lazy day for myself. My belly is not doing so well so I just took it easy. I hardly got off the couch. I am really exhausted from the weekend so it was nice to have a day to myself and do nothing. I am trying to get the PET scan scheduled but as usual I am having INSURANCE problems. That's it for today.
Love,
Dana

Saturday, November 03, 2001 at 05:15 PM (CST)

I had a pretty good day. I had a few episodes of diarrhea but it is under control. Nothing like before. I don't feel 100% but I am hanging in there. I am hoping with my week off next week, I will have a chance to recover and feel really good. Just wanted to check in and let you all know what is going on.
Love,
Dana

Friday, November 02, 2001 at 12:32 PM (CST)

So far so good. I got my treatment today, so that makes 7. I have the whole week off next week so I am thrilled. I saw Dr. Germino today and he is very pleased that this medication is working and that my neck node has shrunk. He is ordering a PET scan for next week to see how the tumor reacted to the chemo. Next cycle he is going to attempt to give me the 10 days and up the dosage to the full amount. I hope I can tolerate it. I'm not sure what I am going to do with my week off yet. Lindsay has 3 days off from school so I hope we can spend some quality time together. I am also hoping to make it into work one or two days also. We have a busy weekend coming up. Tomorrow we have a soccer game in the morning and then a birthday party in the afternoon. Sunday, Steve is going to a Giant game so it will be a girls day for us. I am looking forward to spending we weekend feeling healthy and diarrhea free!!! Thanks again for all the messages in the guest book. I read them over and over again and enjoy them more than you know.
Love,
Dana

Wednesday, October 31, 2001 at 06:13 PM (CST)

GOOD NEWS! The budesonide (new diarrhea medicine) is working. I got my chemo today and have not had any episodes!!! I felt a little queezy but that is it. I had a full day today. I went to Lindsay's school for her parade, then over to Casey's for hers. I videotaped and took lots of pictures. Then ran home and took them trick or treating. By the time I got home it was almost 6, so then the normal rush of dinner and bath. I am exhausted!! Tomorrow I am going to chemo and then doing nothing!!
Love,
Dana

Tuesday, October 30, 2001 at 04:12 PM (CST)

NO chemo for me today. The diarrhea started so they held back on giving it to me. I am on immodium, shots and another drug to try and stop it so hopefully it will and I can get my dose tomorrow. I am feeling pretty good today. I stopped by work for a hello, did a few errands and still have a bit of energy left. My only complaint is that I am not sleeping well. The doctor told me to take 2 sleeping pills tonight. I will try that and see if it works. I feel so tired but cannot sleep for some reason.

Check out the photo album. I've added some recent photos of us!! That's all for now.

Love,
Dana

Monday, October 29, 2001 at 02:47 PM (CST)

Well, the stomach problems begin! However, they are mild so far. I immediately began the immodium and the shots. I truly hate that I have to do these shots 3 times per day. I can't belive I remembered so well how to inject myself. It's more the thought of sticking myself rather than the stick itself. If that makes any sense. I have some nausea today so I am just taking it easy and laying low. I have a full week ahead of me so I don't want to over do it. I really want to be able to make it to Lindsay and Casey's Halloween parades on Wed. They are so excited about it and I also want to be able to take them trick-or-treating. I am hoping all the really bad side effects can hold out till after Wed. I met with the medical student today again and we had a really nice chat. She really is a nice girl and keeps me company while I am having the chemo. I am signing off now and talking a nap. Talk to you all later.
Love,
Dana

Sunday, October 28, 2001 at 05:06 PM (CST)

Today was a pretty good day. I do have a little stomach discomfort but not nearly as bad as last round. I am hoping it is just temporary. Lindsay went to Kyle's birthday party today at Bocraft Amusement Park and Steve went to his friends house to watch football so it was just me and Casey today. We had a nice relaxing day together just watching cartoons and talking about Halloween. I am a little anxious about starting the chemo again tomorrow. I hope I can sleep tonight. That has been my biggest problem so far! The tumor is shrinking again. Everyday it feels smaller and smaller. I don't know if I mentioned this, but I am having another PET scan in about 2 weeks to see the status of the cancer. We are all hoping that it doesn't show up anywhere else in my body. The surgeon from Sloan called Friday night and told me to make an appointment with him after the PET scan so we can discuss a surgery date. Hope you all had a nice weekend and I will keep you up to date this week.
Love,
Dana

Saturday, October 27, 2001 at 03:40 PM (CDT)

I'm feeling pretty good today. The cleaning woman that the Moms in the area arranged came today. My house is so beautiful! Thank you so much!! We went out to the diner for breakfast and did some errands too. Then we went to soccer and then to the Y for a halloween party. So it was a full day for me. I am tired. Hopefully I will sleep better tonight. I haven't been sleeping well even with the anti-anxiety drugs and sleeping pills. That's all for now.
Love,
Dana

Friday, October 26, 2001 at 4:02 PM (EDT)

Today I am wiped out. They gave me some more magnesium and then I got the chemo. I am feeling very tired. I slept most of the afternoon away. I have not had the stomach problems yet, so that is good news. Last cycle they started last night so I feel I am ahead of the game. I have all the medications available if it does act up and the doctor says to be very aggressive. He says to start them at the first sign. Hopefully we can avoid any hospitalizations this cycle. The doctor informed my how serious the diarrhea and dehydration could be. I could actually have a heart attack and die from it. I didn't realize this which is probably a good thing but it did give me a scare. I started a new med last night for depression which is suppost to help with sleep and constipation. All it did was give me a bad taste in my mouth and kept me up. So I am off this drug. It seems that many meds give me the opposite effect. That's it for now. Thank you Jill for all the food. I had some of the pasta for lunch..it was delicious!

Love,
Dana

Thursday, October 25, 2001 at 02:41 PM (CDT)

Today was a pretty good day. I had my chemo this morning at it went pretty smooth. Not much nausea so I was happy abou that! I received a call from the head and neck surgeon from Sloan this morning. He consulted with the other docs there and they all agree surgery, possible radiation and then more chemo. The problem is the timing. That decision is up to me. My doctor here suggests if I can tolerate the chemo to go for a couple more rounds before surgery. But of course he says it is totally my decision and there is no "right" way to do it. My disease is so rare without many statistics so it is just a guessing game. Bottom line is, I have to think it through and see how this chemo treats me and then make the decision about when I will have the surgery.

Last night I attended my support group which I haven't been able to go to in a few months. It was really great to be back with them and it was also a very inspiring session.

My social worker is running this class for 2nd year medical students and asked if I would like to be a part of it. All it is, is a student sitting with me through treatment from waiting in the waiting room and then seeing what I go through. The social worker said the goal of the class is to make these doctors to be see things from the patients perspective. To see that there is a human being behind the disease. Today she came and it was a nice experience. She had researched me a bit so I didn't have to tell her the whole story. It was nice to have the company. She will be returning next week to spend a little more time with me. I think it will benefit both her and I equally.

That's it for today. I'll update again tomorrow. Thanks again for all the e-mails and messages in the guestbook. I enjoy reading each and every one of them.

Love,
Dana

Wednesday, October 24, 2001 at 01:42 PM (CDT)

Yesterday was a great day! I went to work. However, I did not get much done. I was too busy talking and eating! The guys took us out to a wonderful lunch.. yum yum. I did manage to work about 3 hours and it did feel good!

Today I started the chemo again. So far no side effects except for a little nausea. I took care of that by taking the anti nausea meds. I was able to track down that diarrhea med. A pharamacy in North Jersey is making it for me and UPSing it overnight. (Thank you Patty). A member of the Rhabdo group whos son is on the same drug as me takes this med and it helps him not to get such severe diarrhea and dehydration. I am hoping it has the same effect on me. Not much else to report at this time. I'll let you know how the rest of the week goes.
Love,
Dana

Tuesday, October 23, 2001 at 09:46 AM (EST)

The visit at Sloan went very well. The first doctor we saw was Dr. Kraus. He is a head and neck oncology surgeon. He said the surgery would involve removing about 30 lymph glands from my neck. There are risks involved such as nerve damage, etc., but we really didn't get too involved in that. He wants to consult with all the doctors before making any suggestions. The next doctor was Dr. Chong. He is a radiation oncologist. He thought both surgery and radiation is definetly an option for me. The side effects will be dry mouth, loss of taste buds, swallowing difficulty, etc. He is confident that none of these will be permanent. In a nut shell, all the docs are going to consult with each other and come up with a game plan. It looks as though I will have some more chemo, then probably surgery followed by radiation and then more chemo. The news was encouraging. I didn't sleep a wink the night before. Of course I was having dreams that they would tell me none of this is worth it. But that was not the case. We walked away with a good feeling.

Linda and Gene spent the night over so we had a delicious BBQ last night. They are leaving today. We really had a wonderful visit. It has been too long since we had this much "quality" time with them. They are truly wonderful people and friends.

I may go to work today for a little while. I think I need to get out of here and see if my brain still works.

Hope to hear from you all soon.

Love,
Dana

Sunday, October 21, 2001 at 09:56 PM (EST)

Hi all,

I'm feeling great finally! I took the kids Halloween shopping yesterday and they picked their costumes out. Lindsay is going to be Sleeping Beauty and Casey is going to be Blossom from the Power Puff girls. I also got Lindsay a couple of outfits and a new winter coat. We really had a fun girls day out! It was the first time in a long time that I have been out and feeling well.

Saturday my good friends, Linda and Gene came down from Boston to help out. Gene and Steve installed a new potty and changed the bathroom faucet (Gene's a plumber :)) They also fixed the grill and did some other household repairs that needed to be done. Linda did a great job cleaning my house and helping me straighten up some of the clutter. It was really nice having them here to help out and of course to enjoy their company. The kids loved it too! Especially playing with their dog Daisy.

Tomorrow is my visit at Sloan with the surgeon and oncology radiologist. We will be catching an 8:00am train so we have to get up early!! I am looking forward to getting some opinions. I will be starting the next round of chemo Wed. I will get a reduced dose and only 3 days the first week and 5 days the second week. Hopefully I don't have such severe belly problems this time and end up hospitalized. Please wish me luck!

Hope to hear from all of you soon.

With love,
Dana

Saturday, October 13, 2001 at 04:13 PM (CDT)

Here's Dana's information:
Robert Wood Johnson
Room 249
Phone: 732-418-3027

She is able to receive flowers!!!

Give her a call and cheer her up.

Love to all,
Steven

Saturday, October 13, 2001 at 08:14 AM (CDT)

I had a really bad night. I am being admitted into the hospital this morning. I will be at Robert Wood Johnson and will probably be in my room later this afternoon. I will have Steve post all the details later. Hope to hear from all of you soon.
Love,
Dana

Friday, October 12, 2001 at 06:18 PM (EST)

Today was not a good day. I went for my appointment with Dr. Germino. It started out when they took my vitals. I had a temp of 100.2 and I was dehydrated. They gave me 2 hours of hydration and then decided to give me 2 more since my Magnesium and Potassium levels were dangerously low. I was so upset. All I wanted to do was go home and sleep. So my nurse put me in a room with a bed so I could rest. I still have my stomach problem. This is day 10 without solid food. I am going crazy. Yesterday I tried to eat some solids but boy did I pay for it today. Then when the doctor looked down my throat, he discovered I have a fungi infection. He also thinks I may have a bowel infection. My nurse really wanted me to be admitted to the hosptial but she knew I didn't so she didn't push the issue. So now I am on 2 new medications for these infections and I have to go back to the clinic Monday morning to get my Potassium and Magnesium levels checked. I didn't get home until after 4 and I was exhausted. The doctor says we will not begin treatment again until I am eating real meals for a few days and the diarrhea has completely stopped. Hopefully next week will be better and I can regain strength and start the following week. That's all for now.
Love,
Dana

Thursday, October 11, 2001 at 03:13 PM (EST)

I am finally starting to feel better. The belly problems are still there but not too bad. A friend of mine came over today with some type of herbal tea and nutrition for me to try. (Thank you Jill) It didn't taste too bad so I figure I will give it a try. I can use all the help I can get at this point. Not much else to report right now. Tomorrow I have an appointment with the oncologist so I'm sure I will have more news tomorrow. A Mom from the Rhabdo group told me about a new diarrhea medication that I mentioned to my doctor. She said it works real well on her son and he is on the same chemo as me. The doc said he will check it out for me. I hope I can get some of this for my next treatment. The doctor and pharmacist both agreed that I probably won't have hair loss with this treatment. Well, they are wrong. My hair is starting to come out. They said it could thin, but with my great luck, it will all come out. I was hoping to keep it only because I will look alot healthier to the kids. Maybe I still will, who knows. Wish me luck tomorrow!
Love,
Dana

Wednesday, October 10, 2001 at 06:37 PM (EST)

I still have my problem but it is less frequent. I was able to eat toast and soup today. It was the best toast I ever had! I can't believe this is still going on. This is day 8 without solids and I have lost about 8-10 pounds. I am still feeling weak but I do have a little more energy than the last few days. I did a few loads of laundry today and cooked dinner for my family. Now I am off to Lindsay's school for open house. Anyone out there have a cleaning woman? I think I need to get someone in here to help out. This place is a disaster!

Monday, October 08, 2001 at 05:03 PM (CDT)

I am still NOT better. I went to the clinic for hydration today and slept most of the day away. I was given the yucky shots and was told that I am going to have to give myself the shots 3 times per day. I thought 1 shot was bad enough! It looks as though my treatment will be delayed another week since I still cannot keep solids down. The short term goals are for the diarrhea to stop and to start eating solids again. Once I have some nutrition in me, they will begin the chemo. The goal is to get it for 10 consecutive days. The doctor is going to lower the dose to see if I tolerate it better that way. I am so weak from not eating I can barely keep my eyes opened. Will talk to you all soon.
Love,
Dana

Sunday, October 07, 2001 at 11:00 AM (CDT)

I've been feeling very dizzy this weekend so I haven't been able to do much. I am trying to keep myself hydrated but it is not easy. I am also feeling weak from lack of nutrition. My belly is improving a bit but not healed completely. I just hope I start to feel stronger soon.
Love,
Dana

Friday, October 05, 2001 at 03:38 PM (EST)

I'm still having the belly problems so NO chemo for me today. My neck is still looking much better, you can hardly see the lump so that is GOOD news!! I went to the clinic this morning, they gave me a bag of hydration and those yucky shots and sent me on my way. I slept if off at home and I am feeling pretty good right now. Me and my belly have a week to rest so hopefully we will be in better shape for more chemo next time. The doctor may give me the shots prior to the diarrhea to try and prevent it. I sure hope that helps. I really don't want to stop this chemo because it is working! I am just so thankful for that! Thanks you all for sending the e-mails and cards. It really cheers me up.
Love,
Dana
P.S. Say a prayer for our friend Gene. He is in the hospital with some nasty ulcers. Thanks. :)

Thursday, October 04, 2001 at 03:56 PM (CDT)

I received my treatment today but it wasn't easy. First they gave me 2 hours of hydration, then the chemo and then another 2 hours of hydration. I am still having the severe stomach problems so I am on strictly liquids, NO solid foods at all. I also received the shots again which made me sick! They are hoping to get me through tomorrow then I have the week off and maybe my system will go back to normal. I am getting a little sick of gatorade and jello! Will let you know what tomorrow brings.
Love,
Dana

Wednesday, October 03, 2001 at 5:01PM (EST)

Today was not a great day. I had severe diarrhea so they didn't give me my chemo treatment. I was given a huge bag of fluid to hydrate me, 2 shots to stop the problem and lots of pills. I felt very nauseous after all the medications. I was sent home and slept most of the day away. I was told to eat NO solid food, only clear liquids until tomorrow. Hopefully all this will stop the problem and I can continue treatment tomorrow. I was a little dissappointed, but I know how dangerous this can be. The doctor says if it doesn't stop, I will be hospitalized so I know it is nothing to joke around about. I am feeling better now so I am going to get my kids. Talk to you all tomorrow.
Love,
Dana

Tuesday, October 02, 2001 at 7:12 (EST)

The last 2 days of chemo have been OK. The bad news is I have had some severe stomach problem. I have to make sure I am near a bathroom at all times! The good news is the lump on my neck is continuing to shrink. I saw Dr. Germino today and he thought that it was really good that the tumor is responding so well and so quick. This is surely great news! I have appointments set up with 2 doctors at Sloan for Oct 22. The first one is a head and neck surgeon and the other a head and neck radiation oncologist. These are just consultations to explore my options for surgery and radiation in the future.

I went into work for a couple of hours to clean up some things. I must say I will truly miss it there. I work for a wonderful bunch of people (most of them, ha, ha) and I am lucky they are so caring and understanding. I have been there 8 years now and hope to be there alot longer!! As long as I am feeling good, I will try and put in a few hours here and there. There is no way I can sit home if I am feeling well. Thank you all again for your prayers and kind words. Your support means the world to me. Keep it coming!!
Love,
Dana

Sunday, September 30, 2001 at 10:06 PM (CDT)

I'm feeling a little better today. Not much energy though. This chemo stuff really knocks the hell out of me. Tomorrow starts another 5 day week of chemo then one week off. I am already looking forward to my week off. I will have blood drawn tomorrow to see how my bone marrow is reacting to this drug. From what I hear, it is not too hard on the marrow, but we will see. That's it for now.

Friday, September 28, 2001 at 05:20 PM (CDT)

We went to see Dr. Maki at Sloan Kettering today. It was a 2 hour wait but we got come encouraging news. The lump on my neck has gone down since I started the chemo so I asked him if he thought it could actually be working and he said "YES." We talked about other options such as surgery and radiation. He wants me to consult with some head and neck surgeons and radiologists to determine if this will be an option. We felt a little better after hearing this news. It was an exhausting day for us. I completed my 4th day in a row of chemo and will continue next week for 5 more days then 1 week off. I am feeling very tired so I am going to make this short tonight. I'll update again soon.

Love,
Dana

Wednesday, September 26, 2001 at 06:56 PM (CDT)

The first two days of chemo went OK. They said I would not have nausea but I DID! I tried some other anti nausea drugs and they put me on the steriods again. I am hoping I don't need them for very long because I don't like the side effects they have. I also was very tired today, I slept the entire afternoon. It seems I always have the side effects they don't expect. Other than these two things I am feeling okay. The first day we were there the doctor went over information with us regarding the drugs and other chemos we may possibly have to use in the future. His tone was not as optimistic as it once was so this was a little discouraging. He suggests I leave work and put all my energy into getting better. He said this is going to be a long haul considering that this type of cancer tends to keep coming back. This will probably not be the last chemo I am on. I will probably be on many others in the future. We are still going to see Dr. Maki on Friday at Sloan Kettering to see what he has to offer. That's it for now. Thank you all for the inspiring messages in the guest book. It means so much to me.
Dana

Monday, September 24, 2001 at 03:30 PM (CDT)

Good news, I think! I'm starting chemo tomorrow..finally!! My doctor spoke to the doc over at Sloan Kettering along with some other pediatric docs regarding my treatment options. The original plan is not happening because nobody in this country can seem to find the protocol, including Sloan Kettering. The drug I will be treated with is Irinotecan. I will get the drug for 5 days per week for two weeks (that's 10 days of chemo) at 20 mg per day. Then I have one week off and the cycle starts again. It is given over 90 minutes so I will probably be there for about 2-3 hours per day. The worst side effect of this drug is stomach cramping and diarrhea. My favorite..YUK! I am still going to see Dr. Maki at Sloan Kettering on Friday to talk about other options. After about 2 months, I will have scans to see if there is any improvement before we continue. I will also be able to tell by feeling the tumor in my neck if it is working. I am very anxious as you all know to get started so I am glad that it is finally happening tomorrow! That's the update for now.
Dana

Friday, September 21, 2001 at 06:26 PM (CDT)

I will start with a brief history. December 1999, I went in for a simple procedure to remove a small polyp (so we thought) that I had found on my nasal septum. I had been having sinus infections for some time and trouble breathing out of my left nostril. Most doctors were not very concerned about this "bump" but my ENT suggested we take it out because it was interfering with my breathing. Two weeks later, on my hubby's birthday, I got the phone call that changed my life. The doctor wanted to see me and my hubby in her office the next evening. To make a long story short, we found out that this "bump" was an aggressive malignant tumor called Rhabdomyosarcoma, alveolar type. It is a childhood cancer, rarely found in adults. March 1, 2000, the nightmare began. I started my first of many very aggressive chemotherapy treatments. I was first on a pediatric protocol called VAC (Vincristine, Actinimyacin D, Cytoxin.) I had 5 weeks of radiation to my nose then more chemo (Cytoxin and VP16.) This lasted 42 weeks! I ended up in the hospital after most treatments with a neutopenic fever and was put on IV antibiotics. I finished treatment Nov 30, 2000. Just as I was reaching my 9 month anniversary I found a lump on my neck/chin area. I went for a needle biopsy to discover that the beast is back. After several scans, including a PET scan, the doctors have determined that the cancer has spread to some lymph nodes in my chest near my heart. The first step is to start chemo to see if it shrinks the tumor (it is about 2 cm), then possible surgery and/or radiation. Right now my treatment is being delayed. My doctor must find a published article regarding the chemo drugs they will be giving me. He has been contacted other experts around the country. In the mean time, next Friday I will be going to Memorial Sloan Kettering in NYC for a consultation. There is a possibility that I may need to be treated there. This is upsetting because it is far from home and I am very comfortable being treated here in NJ. Of course I will do what I have to. That's the update for now.

Dana

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