FOR ALL UPDATES REGARDING KATIE'S KRUSADERS AND THE EVENTS WE HAVE PLANNED, PLEASE CLICK ON THE "KATIE'S KRUSADERS" LINK TO THE LEFT. THANK YOU.
9-23-03: Katie's Krusaders set a new record on Saturday at the "Light The Night Walk" at Shady Brook Farms by being the largest single group - excluding schools - that they have ever seen (check out the picture in the "Events and Fundraisers" section). No surprise here, huh?? All who attended had a great time and helped raise money for a wonderful cause. We walked, talked, laughed and (most importantly) honored Katie - our guardian angel who was with us every step of the way (of course with her wings, the 2.5 miles was a bit easier for her). THANK YOU everyone for your time, dedication and help in keeping Katie's memory alive while raising money to help fight this terrible disease. Please continue to check back on this site for updates on what KATIE'S KRUSADERS has planned for future events and fundraisers. Thank you and have a great day.
9-09-03: These updates were done mostly once a week during the better part of Katie's treatment and it seems hard to just stop them even though today is 4 weeks since she passed. She touched us in such a special way. I read a saying a while ago that said - "When someone you love becomes a memory, that memory becomes a treasure". Katie has created Treasures for many, many people and I cherish that treasure every day. Please continue to check back on Katie's web site for updates on Events and Fundraisers (see link to the left) that we will be putting together in Katie's honor, we have some great plans. Thanks again for everything.
9-01-03: Tomorrow will be three weeks, we miss Katie every minute of every day. She would have started Kindergarten tomorrow and we can only imagine how she would be there to take care of the "little" kids who are scared and nervous and how she would assist her teacher with each day's lesson plan.
8-26-03: Today is two weeks since Katie's passing and we continue to miss her every minute of every day. We appreciate all of the messages that people are writing to us on this site - we still read every one. We are working on several ideas for events and fundraisers in memory of Katie and will keep you posted on any developments. Please note, there is a "Light The Night" walk on September 20, 2003. A team of walkers named "Katie's Crusaders" will be participating to help raise money for families who have been affected by cancer. More information will be posted on this site soon if you would like to join the "Katie's Crusaders" team. Please visit www.lightthenight.org for more information on this charity.
Katie's family has just received the information on the date and time of her viewing for all that would like to attend:
Time and Place:
Monday, August 18th, 2003
9:30 am - 11:30 - Viewing at Our Lady of Mt. Carmel in Doylestown, PA.
Please use this link for church address and directions
12:00 - Mass followed by interment at Pine Grove cemetery in Warminster, PA.
8-12-03: Hello everyone, this is the update that we knew was coming but we never wanted to write. Today at 9:30 PM, Katie finally allowed the angel to take her hand and show her the way to heaven. She passed quietly and showed no signs of being in any pain. It is not fair to say that Katie lost her battle to her illness; it would be more accurate to say she waged a War Against Cancer!! As everyone knows, Katie was a very strong and determined little girl who made an impression upon this earth in her very short time with us and we are sure she has already started making an impression in heaven. We (her family and MANY friends) will miss Katie tremendously. We would like to THANK EVERYONE for your thoughts, prayers and well wishes - they were, and always will be, deeply appreciated.
Love - Terry, Paul and Paul Duffin Jr.
8-10-03: Another week has come and gone with 3 more close calls, 25 crying sessions, 144 cups of coffee and one very confused angel. Katie continues to lift her hand as if she was putting it in the palm of the angel only to pull it back at the last second and say, "psyche" - she is one tough girl. The Doctor has put her on a continuous morphine drip and today increased the amount they are giving her. This is to make sure she is in no pain and continues to rest comfortably. They also have taken her off her feeds since they seem to be going right through her and making her uncomfortable. No one (except for Katie) knows for sure when she will actually let the angel take her hand and show her the way to heaven but I'm sure when she does, she will do it on her own terms - just as she has done all along. We love you Katie!!
8-5-03: Katie continues to keep everyone on their toes. She once again showed the signs that today may be the day that she decides to give her hand to the angel and let them show her the way to heaven. However, the angel had to report back to heaven alone, again! (I think the angel assigned to Katie may start looking for a part time job). With her family at her bedside praying, crying, and once again laughing when Katie continued to say "NO" and shake her head back and forth that she was not ready. She is a fighter who was never taught to give up and she continues to prove it every day. Thanks again for all of your messages, thoughts and prayers, they are very much appreciated.
8-3-03: With help from the medication, Katie continues to rest comfortably. She has had a fever for several days that fluctuates between 101 and 103 and is not reacting to any of the fever medication they are giving her - remember this is Katie Duffin, no ordinary patient!! Terry and Paul asked me to say "Thank You" to everyone for all of your prayers and wonderful messages that you have been writing on this site. They do read every one of them. They also want to thank all of the people who have brought - and continue to bring - food/meals down to the hospital for them (they can probably open up their own Mini Mart at the hospital), they really appreciate it.
7-30-03: Well it seems that Katie is playing games with the angel who was sent to introduce her to heaven. Late last night it seemed that the angel was in the room and the time may have come (there are several signs to look for and Katie had them). The family was alerted and we were all around her bed crying, talking and then laughing when we realized that Katie was not done fighting (some even heard her say "Not Yet" in her sleep). She does not know how to stop fighting and today even told her Mom and Dad she loved them and also got to see her brother Paul (he always brightens up her day). As was said in a previous update - SHE WILL DECIDE when it is time and no one else, that is what makes Katie - Katie. We all love her very, very much. I just feel sorry for the poor angel who thought that this was going to be an easy assignment.
7-29-03: There really is not much new information since the last update but there are so many people who are visiting this site to leave Katie wonderful and beautiful messages that I thought we would do another update. She continues to rest comfortably with the help of many various types of medication (she is such a fighter that the normal protocol for medication just doesn't work - surprise, surprise). She gave her Dad a big surprise yesterday when she looked right at him, kissed her hand, and put it to his cheek. She then asked him to kiss her, which he gave her right away. She also asked her Mom for her bink, then quickly went back to sleep on her own. She continues to be the strongest and bravest person we have ever met. Thank you again for all of your thoughts and prayers.
7-25-03: It's Uncle Hugh - After visiting with Katie tonight, she wanted me to let everyone know that the medicine she has been getting over the last few days is keeping her very comfortable and allowing her to sleep alot, she really doesn't feel the pain anymore. I told her about all of the people who have been writing her messages and praying for her on the World Famous KatieDuffin.com website. Although she was sleeping when I told her this, I know she would want me to say "Thank You" to everyone for their kind thoughts and prayers and to let them know that she and her family really appreciate them. Knowing the thoughtful girl that she is, she would also tell me to have everyone please say some additional prayers for her family, she knows they need it right now. Thank You.
7-23-03: Hi everyone - this is Katie's Uncle Hugh. She asked me to write this update because she is too tired to type all of these letters. We got some bad news last night - it seems that that darn Blob just won't go away. Katie was complaining of more headaches yesterday morning so the doctors decided to do a CAT Scan of the head. The scan showed that not only is there more of the Blob in new places but it has grown where they were giving her radiation. That means that this thing continues to grow despite the best efforts of the doctors, treatment and all of the prayers that Katie has been getting. The doctors have tried everything medically possible to fight this thing but it just won't listen and continues to grow. We do not know how much longer Katie will be with us but the Doctors assured Mom and Dad that she will not be in any more pain - she has been through enough. As everyone knows, Katie is a beautiful, wonderful, funny, and determined little girl - she will decide. She told me to thank everyone for all of your thoughts and prayers and to please keep praying for her and her family. Thank You.
7-21-03: Well, what a weekend! So many visitors, so little time (I slept a lot). Now that the tube is out I am trying to talk (I used to be quite a chatterbox) but I need to take it easy because my throat is sore and I have trouble being understood. Anyway, I am now on the 5th floor which is good because I have my own room which is more convenient and comfortable for me and my friends and family (plus I missed all my nurse friends up here so much). My blood pressure was really good on Sunday, my temp was going up and down a little (along with the room temp!), and I have a bit of a cough, but all-in-all, I am definitely hanging in there. I even had some ice chips and apple juice! Next, steak and fries (well, that may take a while longer). Thanks again, everyone, for your thoughts and especially your prayers because me and my family certainly need them. Love, Katie
7-18-03: A quick update - they took that darn tube (ventilator) out of my mouth today. Now I need to keep breathing on my own and not have any complications. If everyone could just cross their fingers and say "Katie, Katie, Katie, Katie" I think that would help. I'll let you know how it is going soon. Have a Great weekend.
7-17-03: I know I said that I would update you after my last Zapp of radiation on Monday but quite a few things have changed since then - surprise, surprise!! I won't go into too much detail because it would take toooooooo long, so here are the Cliff Notes of my week:
- Monday they decided that I would need 10 radiation treatments on the Meninges (that covering of the brain where they found more bad cells). That will take us to next wednesday - July 23rd (they don't do the treatments on the weekend - must be union).
- On Tuesday the doctor decided to do a MRI on my full spine because he was concerned about me not moving my legs. They gave the news to my family at about 5:00 that day that the "Bad Cells" are in my spine, both on the outside and the inside - not good news. At 8:00 that night Dr. Greg explained to everyone that they cannot radiate the Meninges and the spine at the same time because the spine cannot handle the amount of radiation that the Meninges need. So the best course of action is to complete the 10 rounds on my head, rest for a week and then start the radiation on my spine. There are obvious risks to radiating my spine (growth) but the alternative isn't acceptable. Remember - I am KATIE ANN DUFFIN - A LEAN MEAN FIGHTING MACHINE and I AM GOING TO KEEP FIGHTING THIS THING!!
- The Doctor said that he sees signs of the radiation working (my eyes moving, my blood pressure coming down) and I even gave my Dad a surpirse this morning by opening my eyes real wide and giving him 2 BIG Hugs. He really liked that. I tried to talk to him but that darn tube is still down my throat. Oh Yea, they are going to slowly take me off of that thing - ventilator - so I can start breathing on my own.
Well, believe it or not, that is the short version. New information seems to come almost hourly so it is hard to keep everyone updated but this should do it for now. I will be back as soon as I can. Your Prayers and Love are very much appreciated from both me and my family. Thank You.
7-12-03: I have had 2 of the radiation treatments so far. The last one will be on Monday at 8:00am. The doctor is giving me some medication that basically keeps me "comfortable" through this whole thing and so I won't remember any of this. However, the thing that is really bugging me is that ventilator that have me hooked up to that breathes for me so my body can rest. The resting part is good but that tube going into my mouth and all of the tape that they have on me to keep it there is a pain. I keep trying to peel the tape off but someone is always there (yes, you Dad) to take my hand away. The doctor said that my Blood Pressure has come down and my eyes look better. Those are 2 things that were supposed to happen if the radiation was doing its job. Well, after my last zapp on Monday, I will update you and let you know how it went. I hope all of you have a nice weekend and I can't thank you enough for all of the prayers that are being said for me. I never thought that many people knew me - I must be pretty special.
7-10-03: Ok Guys, now is the time to really rally the troops together and give me as many prayers as you can muster!!! It is starting to get a bit more complicated than we expected. It turns out that the darn blob somehow found a way to get past all of that radiation and into my meninges (several layers of tissue that separate your brain from the outside world - see, you actually can learn something from a 4 year old) - that is what has been causing alot of my headaches. The doctor said that it is possible that a few very direct treatments of radiation on the spot where the blob is could possibly help and make me feel better. So Mom and Dad decided to give it a try - what a great Mom and Dad I have, I hope they know how much I really, really love them (oh yea, they will be reading this soon won't they?). As we all know by now, nothing is easy. They have to do the radiation at Jefferson Hospital. So that means I get to take a ride in an ambulance from St. Christophers to Jefferson for the next 3 days. I had my first treatment today and it went very well. I think they will be doing another one tomorrow and then waiting until Monday for the last one. At that point they should be able to tell if the radiation is working and stopping the Blob from growing (this is where I need your prayers). I will update you with new information when I am able to. I am a bit tired you know!! Could all of you please do me a favor - when you are saying your prayers tonight, could you please say an extra one for me and my family - I would really appreciate it. Thank You and I'll talk to you soon.
7-7-03: Well, what a weekend this has been. On Thursday the MRI was changed to a CT scan because the darn pain in my head was just too much for even me to handle any more. A quick scan showed fluid up there and the doctors put in a thing called a shunt (they said it is the size of a piece of spaghetti); this shunt thing drained out the fluid and boy did I feel better. My 4th of July was not as we all would have liked but at least my brain stopped hurting...until Sunday that is. I gave my family quite a scare but I could not help it because the pain was back. I finally had the MRI today and now we can relax a little because it was just the shunt was blocked up and not doing its job (everyone was afraid it was another golf ball). The problem has been fixed, after yet another surgery and so far so good. I am resting better for now. Now I have to work on this eating thing...if only they could make this liquid stuff taste like chips and french onion dip (I never have a problem tolerating that!). Oh well.
Thanks everyone for your prayers, they are obviously working for me and my family.
7-3-03: I wanted to get a quick update in before they come and take me down for an MRI. Yes, that means that I am still in the hospital. It has not been a very good week for me. For some reason the food that is going in through a tube and directly into my stomach isn't sitting too well with me. I have been throwing most if it right back up. Also, these headaches are still hanging around and it is making me a bit cranky. It used to feel better when my Mom and Dad would press against my forehead but now that isn't even working. They were giving me some kind of drug to take "The Edge" off and make me feel a little better but that did not work. Since I have not been sleeping too well and the pain is so bad, they gave me Morphine to help and that seems to be the only thing that worked. I am allowed to have it every 2 hours and let me tell you, at 1 hour and 59 minutes I am ready for the next dose. So to make my Mom and Dad feel better, I had a talk with Dr. Greg and asked him if he could do an MRI of my head and neck to prove that there is nothing to really worry about and he agreed to do it. He also said that it was the first time a 4 year old ever requested an MRI - How many times do I have to tell him that I am no ordinary 4 year old????? Someday he'll understand. Anyway, the MRI is scheduled for 2:00 today and we should know the results sometime tonight. I will update you when I get more information. In the mean time, keep them prayers a commin and I'll talk to you soon.
6-27-03 Part 2: I know you are probably wondering how I am doing this while I am in the hospital. Well, mom and dad think I am asleep and so do the nurses but little do they know that I can transmit updates to my site from my very own Handheld Global Positioning System Ultra Compact Mini Computer Transmitter thingy. Try to say that 3 times fast!! Anyway, I am writing again because I have been meaning to say this for a while but this treatment thing keeps getting in the way. Here it is - I would like to THANK EVERYONE for all that has been done for me and my family during this tough time. There have been benefits, luncheons, donations, letters, people just being there when we need them and now I even have my very own Katies Cup Hockey Night (they had that last night). There are so many people to thank that it would take 3 websites to list them all. So please take this message as my (and my family's) official THANK YOU. It is amazing how many Great, Wonderful and Thoughtful people there are in this world and I/we are very fortunate to know so many of them. Gotta shut this Handheld Global thing down now, I hear the nurses coming. Bye for now - Katie.
6-27-03: I was going to wait until after the weekend to give my update but I just found out that the Doctor wants me to come to the hospital and stay all weekend. Seems eating is very important for a body and for a while now I have not been eating very well (Mom is saying in the back - "you have not been eating at all!!). OK, so she is right - once again. The Doctor is going to put a feeding tube into me so it goes directly into my belly and I don't have to taste anything (I haven't been eating because nothing tastes good). This should give me the nutrition, vitamins and fluids that I really really need - I thought I could get all of that stuff from Strawberry milk but I guess I can't. I really need to go now, Mom started the car a few minutes ago so the air conditioner would cool the car down and she now says "it's time to go". Well, I hope all of you have a great weekend and I'll update you as soon as I am back home. Thanks.
6-23-03: Welcome back to the Monday Morning KAD Report (FYI - it stands for Katie Ann Duffin, I thought of that all by myself). The past week was good and not-so-good for me. The good news is that I am done with my radiation treatments (let me hear everyone yell -YEAAA). The doctors and nurses at Jefferson were really nice and I think they will miss me. I can't believe that I have been going there every weekday for 5 weeks to get zapped, it actually seemed to go pretty fast (my Mom and Dad may think differently, but don't all mom's and dad's think differently than us kids?). Now the "not so good" news. Immediately following my last radiation treatment they started on my chemo treatments. I went to St. Christopher's to stay overnight on Tuesday. The doctors said that a side effect (I never know when to use affect or effect - maybe they will teach that in kindergarten) of the chemo could be diarrhea - yuck! If that happens (and it did) I would need to take medicine every 3 hours until it stopped. If it didn't stop, I would have to go to the hospital to get fluids. But, it stopped for the most part. I finished my first round of chemo on Saturday. I now have to go back to the hospital a couple of times this week to get my blood counts checked. They say this chemo stuff really affects (there is that word again) the counts in your body and if they get too low, you could get really sick. The plan now is to get another round of Chemo after July 4th and then they will do a scan to make sure the treatments are doing what they are supposed to do - get rid of every darn Blob Cell in my body. The chem treatments should be about every 3-4 weeks and last about a week for each round. Right now we are not sure how many rounds I will need but I know it is more than one. Mom and I are on our way to the hospital now to get my first checkup. She is having a talk with Duff (our watchdog) to tell him to be good while we are gone. I think Duff thinks she says, "Now when we leave, I want you to bark as loud as you can every time a car passes in front of our house". And for everyone who knows Duff, you know what I am talking about. But, we all love him. This is Katie Ann Duffin signing off for now - I will return with updated information next week. I hope everyone has a Great HOT HOT week
6-16-03: Hello again. I hope all you Father's had a great Father's Day yesterday. We thought it would be nice to make my dad breakfast for Father's Day. We didn't realize how much our Dad can eat - I think we will go out for breakfast next year!! Onto me and my progress - last week was OK. I still have those headaches but my Mom really helps me when she puts her hand on my head and it makes them go away for a while. I only have 2 more Radiation treatments left. Tomorrow I will get the last treatment and then go right to St. Christophers to start my chemo treatments (the doctor didn't buy my "I have a very busy social calendar" excuse and wants me to start the chemo right away - I'll let him win this time!). I will actually be staying at St. Chris's tomorrow night so they can make sure I do not have any side affects to the chemo. If all goes well, I will be going home on Wednesday but have to be back on Thursday, Friday and Saturday to get the remaining treatments. After that, the treatments will be about every 3 weeks. Of course, everything depends on how well I handle the chemo and how my counts are. If I happen to get sick between treatments I will have to go to the hospital and stay there until I am better which will delay the next treatment. Are you confused yet?? I am! So that is where the Life of Katie Duffin stands right now - check back in a week or so for the next chapter. Thanks again for all of your thoughts and prayers.
6-6-03: Hello everyone, Katie here! Did you miss me?? People usually do when they don't hear from me for a week and what a good week it has been. I now only have 7 more radiation treatments left (the last one is on 6-17-03). I still have those headaches and because they were soooooooooo bad and my Mom and Dad were worried, Doc Greg scheduled a Cat Scan for my head on Thursday. There was ALOT of praying going on that the scan would come back showing nothing (except a very intelligent and active brain) and guess what, it was clean as a whistle!! When the Doc told Mom that it was clean, she actually started to cry (Mom Mom Saunders was there too - she comes with us every Thursday - and I think I saw a tear or 2 in her eye also). I like it when Mom has a Happy Cry and not a sad cry (like when Dad calls and says he will be home soon - only kidding Dad). Doc Greg gave us some other news too. He doesn't even want to give me 1 day off after the radiation treatments are done (I told him I will have to check my social calendar before I can commit to this) he wants to start with the Chemo treatments on 6-18-03. I will be doing the first Chemo drug as an outpatient. The good news is that I don't have to stay overnight at the hospital but the bad news is that we will be there most of the day when I am getting the treatment. Well, Dad is do home soon from work and Paul from school and I want to be at the door for both of them so I can give them a great big hug and kiss (ok Paul, only a hug). I hope everyone has a great weekend and I'll talk to you again next Friday for my next update. Adios!!
6-1-03: I can't believe it has been a whole week since my last update - time goes by so fast!! My week was ok. For some reason these darn headaches won't go away and they are bothering me - I can't seem to get through one episode of Spongebob without a headache (my Dad says the same thing). Mom is talking to the doctor to see if there is anything that they can give me to help with them (Tylenol ain't cutting it). The doctor says that it is from the Chemo drug he has been giving me (by the way, he let me skip this week with on the chemo treatment to hopefully get rid of the headaches). Enough about my headaches - yesterday we went to the "Walk For Life" in Doylestown and guess what - it was Raining!! Was there even one sunny day in May?? How am I supposed to work on my tan? We had a great time and enjoyed seeing everyone. On Friday we passed the hump on my radiation treatments - we have completed 14 of them and only 13 more to go. Boy I can't wait until they are over, you don't know how hard it is to get my Mom, Dad and Paul Jr. up and moving every morning. You would think that the smell of eggs and bacon cooking would do it (by the way, I cook breakfast for everyone each morning, doesn't every 4 year old?). Well, I gotta get going. I hear Mom and Dad running in the hall upstairs after I told them 3 times to go to sleep. Dad keeps saying it is all Mom's fault so I have to go and give someone a time out. Thank You and I'll be in touch soon.
5-23-03: Happy Friday everyone and welcome to a long weekend - YEA!!! Well, 10 down and 17 to go - almost halfway done. I think the radiation is giving me energy and making me talk more (or I could just get that from my mom - only kidding mom). Actually, Dr. Curran (he is the radiation Dr., I call him Dr. Rad) told my mom that he is very impressed with my progress - no redness, no drying of the skin and no sore throat. He thought I would have all of these by now. I told him he is not dealing with the ordinary patient - I am KATIE DUFFIN, a mean lean fighting machine (I'm not really mean though, it just rhymes). Also, Dr. Greg (the chemo Dr.) said that the headaches and bone pain that I have been having lately is from the Vincristin (chemo drug) and is normal. Sure, normal for him - I'm the one with the headaches! Today was an extra special day, I went to school and saw all of my school friends and teachers. I even got to be in the class picture - I'll put it on my Photos Page when they send it to me. Thanks again for keeping up with my progress and sending me notes. I hope everyone has a Great Holiday Weekend - I know I will. Talk to you next week.
5-19-03: I'm up bright and early on this beautiful Monday morning (hope everyone had a great weekend). Mom and I are getting ready to go to the hospital for my 6th radiation treatment. I finished my first full week of treatment and I feel pretty darn good. On Saturday, my brother Paul made his first holy communion and boy did he look great in that suit. However, I think that bread stuff is still stuck to the top of his mouth. Anyway, I gotta get going now - Mom needs my help picking out an outfit for her to wear today. I'll be in touch soon. See Ya!
5-14-03: 3 down and 24 to go. I finished my third radiation treatment today. Those doctors at Jefferson must have done this several times before because they get me in and out of there very fast - which is just fine with me. Besides , if I'm away from Mom and Dad too long, they get scared and it takes me a while to calm them down. That funny juice is still a pain when it starts to wear off - it makes me feel all dizzy and I don't like that. Dad says that his juice makes him feel that way sometimes too (remember - his juice is beer). Tomorrow is the LONG day - I have to get my radiation treatment in the morning and then go for my Chemo treatment at St. Christophers. I will update you again soon. Thanks for all of your messages on my Guestbook - I love reading them.
5-12-03: Well my first Radiation treatment was today and I passed with flying colors. OK, so I didn't do too good when that funny juice started to wear off but other than that, it was a piece of cake. They made me go to sleep with that funny juice and then they zapped me where the golf ball tumor used to be. It really didn't take that long and Mom and Dad did real good - only 2 boxes of tissues today. But seriously, they told us today that there will be 27 total radiation treatments. That should take us to mid June. They will take one more picture tomorrow of the area where they are working on me and then it should be a quick in and out after that (except for Thursdays when I have to go to St. Christophers for my Chemo treatment - but we will cross that bridge when we come to it). I'll keep you posted. See Ya!
5-8-03: Another day, another trip to the hospital. Today Mom and I went to St. Christophers for my Vincristin (Chemo drug) shot. You would think that they (they doctors and nurses) would be used to seeing my by now but every time I go there, they are soooooooo nice and happy to see me - that makes me feel real good. Oh yea, they like seeing mom too. Anyway, the doctor told us today that the full chemo treatments (the ones where I have to stay in the hospital all week to get them) will start when the radiation treatments are done (5-6 weeks). Mom asked how long the chemo treatments would be and the doctor said that the Full Treatment for my cancer is one year from the date of diagnosis (which was March 11, 2003). A FULL YEAR? Hey, I got things to do, people to meet, places to go - they are going to have to work around my schedule on this!! I told the Doc that but he didn't buy it. I personally think that they could be done the treatment in much less time, they just want to keep seeing me because they like me so much and I make them laugh. Who ever thought my great sense of humor would get me into this? Well, it is going to be a Long Summer for Mom, Dad and Paul and it starts in 4 days with my first Radiation Treatment. I'll be OK, but you may want to say a few prayers for my family. I'll keep you up to date as much as possible. Wish me luck! Have a great weekend (and for all you Mother's out there - Have a GREAT Mother's Day). Love - Katie.
5-5-03: Hello everyone. I have been kind of busy of late having fun just being a kid (playing with friends, beating dad and Paul at air hockey, chasing duff, etc) - and forgot to do my updates. However, over the past 2 weeks there really wasn't much to update you on until today. My Mom and Dad took me to Jefferson Hospital again to meet with Dr. Curran and the other people who will be helping me with my treatments - They are all VERY nice and gentle with me (they are gentle with mom and dad too). They had to fit me for a mask that will keep my head from moving during the radiation treatments - the Dr. said that is very important and who am I to argue. Just a side note - even with the mask on I am still darn cute. My radiation treatments officially start next Monday at 8:00am. They will continue Monday thru Friday for 5 to 6 weeks. I will have to get that funny medicine that makes me feel tingly all over and then fall asleep before each treatment - at least in the beginning anyway. Oh yea, to add one more thing to my weekly schedule, I have to go to St. Christopher's every Thursday after radiation to have a Chemo treatment. The Doc said the plan is to attack these Bad Cells from every possible angle. This week I will be preparing my mom, dad and Paul Jr. for the weeks ahead. They will need my support, guidance and understanding - is a Childs job never done?? Well, thanks for keeping up with my progress and I will inform you of new news when I get it. Talk to you soon.
4-22-03: Hi again, it's me, Katie. Well today we met with Dr. Curran downtown at Jefferson (boy what a huge hospital that is). Dr. Curran is special because he has a radiation treatment that can be aimed real good at the cancer so it doesn't hurt any part of my body like my spine. This will ZAP it good! But, we will have to go to his hospital every week day for five whole weeks for this thing. Mom and Dad say that if I can do the procedure without needing medicine to calm me first, it will only take a few minutes each time. If I get the calming stuff I will probably go to sleep and it will take a couple of hours. Sorry folks, I think I am going to choose the medicine first...hey, I'm only 4 1/2 ya know. The more I can sleep through during this whole thing, the better! We will find out in the next two weeks when we will start the radiation. I'll be sure and let you all know. As usual, thanks for checking up on me. Love to you all.
4-15-03: Hello everyone. I am doing fine and am really looking forward to tomorrow - my brother Paul is coming to school with me (whether he likes it or not - only kidding, he really wants to come). I get to show him off to all of my school friends. With regard to that Golf Ball (I keep forgetting- it was changed to a Grape), my mom, dad and I are going to St. Chris's on Thursday for a meeting with several Doc's. We get to talk about the Chemo and Radiation treatments and when/where to have them done. I heard through the grapevine that there is this really cool new radiation treatment that is mucho better than the old kind. The catch is that it is only in 2 hospitals, one in Boston and one in California. We need to talk to the Doctors about what we should do. After we talk with them, I will let everyone know what will happen next. I have to go now, it is time for me to give my Mom and Dad their computer lesson. They are really picking this up fast, they now know what Double Click means.
4-11-03: Well, they let me go home today. My fever finally went away and my Mom and Dad took me home. We are waiting for information from the doctors on when/how/where my Chemo and Radiation treatments will start. I feel really good now and look forward to sleeping in my own bed (or my mom and dad's bed). I plan on having a fun and exciting weekend with my family. However, I am going to let them think that I still hurt a bit and need to be waited on. Maybe I can get a bell to ring when I want something and watch everyone come running! That sounds fun. I hope everyone has a great weekend and I'll update the site again when we get more info from the Doc's. See ya!
4-9-03: I wanted to try to get in a quick update while there is a commercial on the TV during the Flyers game (I taught my dad everything he knows about hockey) - by the way it is a 3 to 3 tie right now. Anyway, I'm still here at St. Christopher's. I may have even gone home today if it wasn't for a fever that I somehow got - how do you get a fever in a hospital?? I'm still a bit sore from the operation but that's not keeping me from getting up and walking all over the place by myself (it's fun when mom is asleep and I get up and sneak out of the room - but don't tell her). There is talk that I may be going home tomorrow if the fever is gone. I can't wait to go home - I miss my brother Paul, and my bed and even Duff (remember, he is our ferocious watch dog). They said I should be starting the Chemo treatments in about 2 weeks. That won't be fun but I know I can handle it. Thank you for your thoughts and prayers. Talk to you soon.
4-7-03 (update #2 for the day): News Flash - "Katie Duffin clears the next hurdle in the remarkable fight to get rid of the golf ball (oops - grape) that was in her shoulder". Isn't that a great headline? As I mentioned below, we were waiting for Dr. Greg to come and tell us the results of the Spinal Tap (they took fluid from my spine, get it - Spinal Tap). They were afraid that since the bad cells were throughout my C-7 nerve when they removed it during the last operation, they may also be in my spine. I told everyone at the hospital that I have so many people praying for me that there is just NO WAY that could happen. Guess what - I WAS RIGHT!!!! Dr. Greg just came in and told my mom and dad (I pretended I was asleep so they could talk in private) that they fluid is clear - no bad cells in the spine. YEAH!!! I think this time mom and dad were crying because they were happy, and that makes me happy. I still have to do the chemotherapy and radiation treatments, but things are starting to go our way. Thanks again for all of your thoughts and prayers - they really helped. Gotta go get some sleep so I can heal from the operation and go home! Talk to you soon.
4/7/03: We are still waiting for some extra information from Dr. Greg, but so far...GREAT NEWS! That darn golf ball was only the size of a grape! And, guess what else...the doctors checked my lymph nodes in my neck and they are clear. And, that's not all...there were no "complications" so all of those very scary possibilities are now not a worry (like a droopy eye, slurred speech, and possible removal of part of my vertebral artery and my left carotid artery). The operation went very well; it shouldn't come as a surprise since I have so many wonderful people praying for me! Within an hour after waking up from the surgery, I was already re-establishing my rightful place at the throne by hollering orders to my royal subjects (you know, my mom, dad, the nurses, and all). So you can all bet that sooner rather than later I will be back to my very witty and adorably funny self.
More news to follow after mom and dad talk to Dr. Greg.
4-6-03: Well tomorrow is the big day. The doctors will be giving me that "funny juice" again to make me go to sleep so they can go in and get the rest of the golf ball out of my shoulder. I'll let you know how they do when I update the site tomorrow night. Talk to you soon.
4-1-03: I know I said I would only update the site this week if there was something new to tell you, and guess what - there is something to tell you. As if I wasn't challenged enough with that golf ball in my shoulder and having to listen to Dad sing, I went to the doctor and he said I have strep throat. Now I know I'm a tough little girl, but this is getting ridiculous (bet you didn't think I could spell that correctly). The antibiotics that the doctor gave me for the strep seem to be working and I should be done them by the time my operation is here (in case you have forgotten, it is 4-7-03). My hand is hurting a little bit but all in all, I feel OK. Well gotta go now, it's time for my medicine - not sure which one but I know I am do for something.
3-28-03: TGIF. There is not much to update today but I thought I would just log onto my website and see what is new. I can't believe how many people are visiting my website and leaving messages - if I had known that I was this popular (and cute as many have you pointed out) I would have done this a long time ago. Thank you for all of your messages - I do read every one. I will update the site this week if there is any new information to tell you. If not, I will wait until after they are done the operation on 4/7/03 to update everyone (they won't let me have a laptop in the operating room to update you in real time so it will have to be after they wake me up). THANK YOU again for all of you thoughts and prayers. They are helping me get through this tough time. I hope everyone has a great weekend.
3-27-03: Mom and Dad took me to St. Christophers today to see Dr. Greg about the pain I have been in for the last few days (if they would stop making me clean the house maybe I wouldn't be in so much pain - only kiddin Mom and Dad). They think it may be from the operation I had last week but to be on the safe side the Dr.'s gave me some Vincristine (a chemo drug) through a needle. They said that this could help shrink the golf ball in my shoulder and hopefully take some of the pain away. They also gave me some other medicine that will make my body think there is no pain at all - I think it's called Demoral. My Dad has something just like it but he calls it Beer and believe me, it works for him!! Anyway, this should hold me over until April 7th (the next operation). I am pretty sleepy now so I better get ready for bed. Maybe I'll try to get in one more load of laundry for my mom and dad before bedtime - Talk To You Soon!
3-26-03: Today I went to school again and rode a bike in the gym - I had a real fun time and it kept my mind off the pain in my shoulder. Speaking of that, it has been hurting alot lately so my Mom and Dad are taking me to see Dr. Greg tomorrow (he is real nice). He will decide what to do to help take the pain away (I hope he says eat alot of ice cream!). Also, they finally gave me a date for the next operation to get rid of that Golf Ball - drumroll please.............. April 7, 2003. Not sure what time yet but at least we have a date. Thanks again for keeping up with my progress. I have to go, Duff (our Ferocious watch dag - poodle) is barking at his shadow again.
3-25-03: I got up early today to write this update, so I have to be quiet because the family is still sleeping (I think they are expecting breakfast when they get up so I will have to make this quick). No news yet from the doctor on when the next operation will be although we think it will be sometime next week. We might find out today and I'll let you know. I am feeling OK and even asked my mom if I could go to school yesterday - it took a little convincing but she let me go. I had a great time. I am not going to let this thing slow me down - I am a determined woman (ok, Kid). I think I hear dad upstairs so I better start breakfast. Check back soon.
3-22-03: The rumors were right - I am going home today. The doctor made me do some exercises with my hand before he would let me go home. I passed the test and am happy to be leaving. The doctor will be telling Mom and Dad sometime next week when the next operation will be. As soon as we hear, I'll let everyone know. With my left hand still a bit sore, it is difficult to do all of this typing - you would think someone would offer to do it for me!! Talk to you soon.
3-21-03: I had a good day today and even heard rumors that they will be showing me to the door tomorrow - Yea!. Tonight my brother Paul is coming to the hospital and staying over with us. I really miss him.
3-19-03: Today they took those fingers off of the golf ball that were going into my C-7 nerve and near the Dora (remember that word?). They operated on my back so they had to put me on this bed and had my face through a hole in the bed for a long time - my mom says it is just like a massage table. The doctor said that he had to cut the C-7 nerve and that will affect my left arm a little bit. They are going to look at that nerve to see if the bad cells are throughout it and they should know in a few days. I feel OK right now but I think it is from the Morphine they are giving me through that tube in my arm. The second operation is scheduled for next week. Talk to you then.
3-17-03: They need me to come in today and do an MRA - why do they have so many acronyms?. This will show them that the Vertebral artery is strong enough to handle the operation and guess what - it is!!! My 1st operation is sheduled for 10:00am on Wednesday. I hope I can watch a little Spongebob before they take me into the operating room.
3-11-03: Well, my mom took me to the hospital today because my arm is still hurting me. After they put me in that loud noisy thing again (MRI) the doctor told us that the Golf Ball thing is back again near my shoulder and neck (I don't even like golf, why is there a ball in my neck?). Anyway, after I calmed mom and mom mom down and let them know that it would be OK, the doctor said that he had to talk "Doctor Talk" with some of his friends to decide on how to get that thing out of me. They decided that they would have 2 operations - one from the back and one from the front. Part of the ball (the ball actually has fingers coming out of it) is on/in the C-7 nerve (they tell me it is right after the C-6 and right before the C-8 nerve - no Duh!! I am 4 you know) and the other part is on or near the Vertebral Artery. I finally calmed Mom down and we can now go home.