Journal History
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Wednesday, September 21, 2005 2:26 PM CDT
Well, Kaylee went through a series of tests...chest xray, EKG, echocardiogram, abdominal ultrasound, and blood tests. I think everything went fine, but I can't seem to get the Oncologist to call us up with the results. She was supposed to call last Friday but didn't. I called Monday and left a message with the onco nurse and she still hasn't called. I supposed "no news is good news" but I'd prefer that the doctor would call so that I'm sure that she read through all of her tests. Anyway, I was surprised to find out that she is now done with her testing since she is now 3 years in remission. A year from now we go back but it's to a different division that does followup testing. I'm not sure what kind, but the Oncologist told us that they deal with any problems or side affects that she may experience in the future from the chemo and radiation. Soooo, unless I check back in with different news, "no news WAS good news!" :)
tammy
Tuesday, September 6, 2005 10:12 AM CDT
Hi everyone! Well, time is just flying by...it's been almost 6 months since I've updated! We had a great summer, full of fun. Kaylee couldn't wait to start 2nd grade (she was running circles in the yard yelling "YAHOO!" while waiting for the bus! Her 3 year checkup is scheduled for September 16th. She gets an abdominal ultrasound, chest xray, and echocardiogram/EKG. After this series of tests, I believe that she goes to 1 year checkups instead of every 6 months. I'll let you know how she makes out. We've been very fortunate....she's been very healthy, not even a cold to speak of, and she's GROWING like a weed! I'll check back in soon after her tests.
tammy
Monday, March 7, 2005 5:53 PM CST
Hi everyone....sorry the updates are getting further and further apart....I guess that's actually good! We went for Kaylee's 6 month checkup today and everything looks great. She's growing like a weed and loves 1st grade. Life is finally feeling "normal" again (I didn't think that would ever happen). We still check in on our other friends who have fought (or are still fighting)the battle with cancer. Our thoughts and prayers go out to the Mathis family whose daughter Haley is currently fighting a hard battle with the Wilms monster. Stay strong!! If anyone would like to send some prayers and words of encouragement, her website is http://www3.caringbridge.org/ne/haleygirl/ With that being said, you probably won't hear much from me again until her next 6 month checkup in September. Thanks for checking in on us!
Tammy
Sunday, October 10, 2004 8:43 AM CDT
Hi everyone. Just checking in to say all is well here at the Parker household. Kaylee started 1st grade and LOVES it. I don't know which she thinks is cooler, going to school or riding the bus! lol Her mysterious illness that she had for 6-8 weeks is gone. I guess we'll never know why she just randomly vomited, white blood cells in the urine....all a mystery but she seems fine now. She naturally lost her first tooth (she had 2 pulled prior to chemo, including her front tooth), so she had the thrill of a toothfairy visit. She's growing like a weed and just enjoying life like any other 1st grader. Our thoughts and prayers go out to the many families who are still fighting cancer...we frequently check in on your websites to see how everyone is doing. That's all for now.
tammy
Saturday, August 14, 2004 7:26 PM CDT
Sorry for the delay in updating....Kaylee's scans looked good (YEAH!). I was waiting for the Oncologist to call me with the official results but she never did. She looked at the scans but the Radiologist had not when we talked to her. She said that Kaylee looks very constipated. We're giving her medicine for that but so far it didn't do much but give her a little diareah. We're elated that her problems aren't cancer related but we're still baffled as to what her problem actually is (or was). She hasn't had any episodes since Sunday so hopefully it was just something strange that went on for 5-6 weeks. She lost a little weight...she was 48 lbs, now she's 45.5. The past few days she's had an appetite again, but she seems to be tired alot. She sleeps about 12 hours a night and then she's been sleeping in the afternoon (which she quit doing quite awhile ago). She has color in her face again though and looks good. She's soooooooo excited to start 1st grade. She's counting the days. I'll post again if her "episodes" continue. Otherwise, I'll post when she starts 1st grade at her new school.
tam
Monday, August 9, 2004 3:06 PM CDT
Well, Kaylee's mystery illness remains a mystery! Thankfully the ultrasound and other tests didn't show anything, but we were hoping to find out what her problem actually is today. She has to go Friday for a CAT scan on her brain and abdomen. She has to be completely still for an hour so they'll have to sedate her. We have to be there at 7:30AM so we should be out of there sometime in the morning. We won't immediately get the test results like we usually do though. Our oncologist is going to review them and let us know whether to come up on Monday or not. They've never scanned or Xrayed her head at all so that's really the only thing that I'm still leary about. We had her to the emergency room on Saturday because she had a fever and severe pain in the back of her head. If the scans on Friday are clear, then they're stumped. The Oncologist said that it could possibly be appendicitis (sp?). The ultrasound wasn't done on the appendix but she was going to look and see if it showed up in any of the pics today. The scan on Friday will show it clearly. The white blood cells in her urine are also a mystery. We were told that there are some non-bacterial white blood cells so that might be what they are. Anyhow, if all of these tests come back okay, we just have to wait and see if she gets over the random vomiting and stomach pain. I think that she may have caught the flu last Friday so she ran a fever through the weekend. Her fever is gone and her color is a bit better than it was but she's still on the pale side. That doesn't explain the stomach pain/vomiting for the past 5-6 weeks though. I'll update again as soon as we hear anything about the CAT scan results.
tammy
Saturday, August 7, 2004 4:10 PM CDT
This morning Kaylee was complaining of stomach pain and she had pain in the back of her head. She was running a fever so we took her to the local emergency room. They did blood and urine tests, and the urine again came back with white blood cells. We just had the other urine culture on Tuesday and it never grew any bacteria so they didn't give her any antibiotics. Today, the doctor gave her Bactrum and they're going to do another 48 hour culture to see if it grows any type of bacteria. We're back home now and anxiously awaiting Monday to get here so that the doctors at CHOP can run tests and see what is going on. Since the other culture didn't grow bacteria, I don't believe that this one will either. For some strange reason, there's white blood cells present though. She hasn't ate anything at all today and it's 5:30....hopefully she'll get an appetite soon. I really can't wait to get her tested...the waiting is hell. Thanks for checking in.
tammy
Thursday, August 5, 2004 10:02 AM CDT
If you haven't checked in for awhile, please look at journal history. Kaylee had an Upper GI yesterday and her problems aren't from acid reflux so that possibility has been eliminated. I was hoping that the white blood cells in her urine would grow bacteria during the 48 hour culture, but it didn't so there's not a urinary tract infection. I talked to the Oncologist yesterday and she said that if the culture didn't show a urinary tract infection, to schedule her for Monday. I just got everything scheduled so on Monday she'll get an ultrasound, chest Xray, labs, EKG/Echo, and urine tests. Hopefully this will bring some light to the problem and it will be anything but the dreaded "C". I'll let you know how we make out.
tammy
Tuesday, August 3, 2004 10:34 AM CDT
I thought I'd take a minute and update. We've been having some problems with Kaylee. She has been randomly vomiting a few times a week for about 4 or 5 weeks. I took her to the doctor about 3 weeks ago and they found that she had strep throat so they put her on Penicillan for 10 days, and strangely enough, it seemed to subside. That was short lived...she started complaining of stomach pain and vomiting again (maybe once or twice a week). She has had 2 episodes today but she has no fever and she's fine other than vomiting. She's running around, eating, doing normal stuff. I took her back to the doctor today and her throat and ears look good. She has white blood cells in her urine which are being cultured to see what type of infection she has. (They tested her urine 2 weeks ago and it didn't show anything). Tomorrow we go for an Upper GI to see if it's acid reflux. Kaylee had this test when she was around 1 1/2 years old and she had minor reflux. If it isn't reflux, then we have to call CHOP to schedule an earlier appointment (her 6 month checkup is September 2nd). That will put her at the 2 year mark for being in remission....we're keeping our fingers crossed that this is just acid reflux of some sort. I'll let you know how the tests come out.
tammy
Sunday, June 20, 2004 6:05 PM CDT
Hi everyone! It's been awhile since I've last updated. Kaylee is doing great. She hasn't even had a cold or anything to speak of (knock on wood). She's enjoying her summer so far. September is her next checkup...I'll be sure and let you know how she makes out. Unfortunately we lost a beloved member of our family over the weekend. You may remember seeing our dog Sheeba on the website when Kaylee had her all dressed up in sequins. She passed away after almost 11 years with us. We are devastated and thought that a new puppy to help fill the void. Here's a picture that I took today of "Belle" and Kaylee. Now we have a cat "Jingles" and "Belle" the dog. I hope everyone enjoys their summer! You probably won't hear from me again until September when she gets her checkup.
tam
Sunday, March 14, 2004 7:54 AM CST
Kaylee found out that Clay Aiken's songs were added to "Zeocast" and that's her idol so we just HAD to change the music to his. She also picked out a new background and theme for her pics. You can click on any of the "falling" pics for a large view. I took a picture of her the other day with her Christmas kitten (not much of a kitten anymore!). She can barely pick him up. His name is "Jingles". Kaylee's doing great...she joined a swim class and had her first one yesterday (she loved it!). She has dance on Mondays...just a typical kid! I had said earlier that her next scans aren't until September but I'll update every now and then.
Meanwhile we are still checking in with all of our internet friends whose children are still battling cancer. You are all in our thoughts and prayers...
tammy
Tuesday, March 2, 2004 10:25 AM CST
Another 3 months down and all is well! YEAAAAHH! Kaylee had all of her tests yesterday and everything looks good. She now goes to the 6 month checkup for the next 3 years (approx) and then it goes to once a year. Her next appointment will be in September. I'll update periodically to let you know how she's doing and what's going on. Right now she's just a normal happy 5 year old. Her hair is finally growing out but can't seem to get long enough for her (she'd like it to be like
Barbie Rapunzels!). She's doing good in kindergarden. She's going to school at the same place that she attended daycare since she was 6 months old. They're discontinuing the school program so she will be going to Middle Township public school next year. The only problem is that when she came back to daycare after her chemo treatments, they placed her in Pre-K since it was a small class and she could catch up. The only place to go after Pre-K is Kindergarden which she did but she is actually too young. The cut off date is October 1st and her birthday isn't til November 6th. So I have to meet with the Principal at the new school later this year to see if she has to go back to kindergarden or if she should move on to first grade. It's a tough call because her class only has 5 kids (2 of which are actually in a lower grade) so she got plenty of one on one teaching. She's way ahead of public schools as far as what she's been taught but I don't know how she'd do socially when being removed from such personal classrooms to classrooms of 20-30 kids. Guess I'll just have to wait and see how it all plays out........... Thanks for stopping in to see how Kaylee's doing! :)
tam
Friday, February 13, 2004 7:14 AM CST
I usually only update when Kaylee has an appointment but I thought that I would today because it was 2 years ago today that Kaylee was diagnosed with Wilms. I can't believe it's only been 2 years.....it seems like 10. Me and Jim were talking and neither of us can seem to remember the "pre-Wilms" days with Kaylee. That's sad...I guess that the trauma of it all over rode alot of those memories. I can remember this day 2 years ago though like it was yesterday. Kaylee had been sick to her stomach since 8:00 PM the night before. She had a wellness check scheduled for 2:00 today (2 years ago). I called them at 10 AM because she was having back pain and her belly button looked blue (they told me to keep my 2:00 appointment!). I took her there and they told me they thought that her appendix had burst and to get her up to Shore Memorial. We got there and the Xray machine wasn't working right but when they got and Xray there was a huge white blob there and the nurse said she must be constipated. Eventually the doctor came in and wanted to talk to us in another room. I knew that something was drastically wrong, otherwise he'd talk to us in front of Kaylee...she had just turned 3...it wasn't like she'd understand the conversation. We went in a room and I saw a Bible on the table in the corner and I really knew it was bad. It was then that he told us it was a tumor but even that didn't sink in until I asked if it was cancer and he said yes. That's when our entire world flipped upside down. She was then rushed to Philadelphia Childrens Hospital. Her tumor had ruptured and she needed transfusions so she was put in ICU. They couldn't decide whether to try and remove it or do chemo first. Initially they were going to do emergency surgery that night but then changed their "attack plan" to doing chemo first and then removing it. It all seemed so hopeless at that point in time but here we are two years later and so far, so good. Kaylee is doing great physically and thrives in school. Our next appointment is March 1st which will be the last of the 3 month checkups and then we go every 6 months. Out of all of the bad that has happened, alot of good has come from it. It has brought our family closer and we never take a single day for granted. Everyday we wake up and we're all here and healthy is a blessing...........I'll update again at the beginning of March to let you know what Kaylee's results are....she gets the extensive testing this time...full abdominal ultrasound, chest Xrays, blood and urine test. To all of those parents out there whose children are still fighting "the beast", take care, be strong, and never lose hope!
tammy
Tuesday December 8, 2003 8:32 AM CST
Kaylee's appointment went great! She's gained 2 lbs since her last visit 3 months ago. Her next appointment is March 1st for an ultrasound, chest Xray, blood, and urine tests. After that appointment we graduate to every 6 months. Now we can truly get into the holiday spirit...(guess I'd better start my shopping?!!!). I hope everyone has a happy and healthy holiday season. You probably won't hear from me until the next checkup. Thanks for checking in to see how Kaylee's doing!
tam
Tuesday, September 9, 2003 8:21 PM CDT
Well, another 90 days down and all looks good! Yesterday we took Kaylee for her 1 year checkup which consisted of an echocardiogram, EKG, ultrasound, chest Xray, blood and urine tests and they all looked good. All of the results weren't in until today and the doctor said she'd call if there were any problems. No news is good news! I had said that we wouldn't be going back for 6 months but I was wrong. We go back every 90 days for another year, then every 6 months for 3 more years, and then once a year for 5 years (10 years total). I believe that after 5 years she's officially considered cured, and not in remission. Still a long road ahead of us but so far, so good. I've finally fixed Kaylee's album page so that there are 3 pics if you'd like to see them. Kaylee started dance classes (tap and ballet)so I took a pic before we left last night. She's standing on her mini trampoline. She did really great (I'm a little biased! :) and loves it. You probably won't hear from me again until her next appointment on December 1st. Thanks for checking in on us!
tammy
Sunday, August 24, 2003 2:59 PM CDT
Hi everybody! Time is just flying by....Kaylee starts kindergarden on September 2nd. She's actually a little young (her 5th birthday is November 6th) but since she was put in Pre-K when she completed her chemo treatments (the class was smaller so she received more one on one attention), the next step is kindergarden. Next year she'll go to public school and it's unknown as to whether she'll go to first grade or have to repeat kindergarden because of her age. The principal will determine whether she's ready or not. Kaylee has been doing quite well...she looks great..I keep meaning to put a recent pic on her site but something else always comes up. I'll get it on there soon! Her one year checkup is September 8th. She'll get an ultrasound, chest x-ray, blood and urine tests. Hopefully all will prove to be good and we won't go back again for 6 months. I'll update and let you know how we make out. Guess that's all for now! :)
tam
Wednesday, June 4, 2003 5:46 PM CDT
Another 3 months under our belt and all is WELL! Kaylee had her checkup on Monday (chest x-rays, blood, & urine tests) and everything looks good. She put on a few pounds...she's almost 40 lbs now! Her next checkup is in September...that will be her one year off chemo. They do a full set of tests including heart, abdominal ultrasound, chest xrays, blood, and urine tests. I like it when they do that...it really eases my mind. So all is great at the Parker household! I probably won't update again until her next set of tests. Thanks for stopping by to see how she's doing!
tam
Thursday, April 24, 2003 7:50 AM CDT
It was one year ago today that Kaylee went in for surgery to have her kidney removed. Soooo much can happen in a year! I've added a photo above of Kaylee's Easter picture. My scanner isn't working so it's a picture of a picture (little grainy) but as you can see, she's happy and healthy! She's gaining weight and her hair is coming in super thick. It felt like we'd never get to this point during treatment but we're finally here. Hopefully all of it is behind us now. Her next 3 month visit is June 2nd so I'll update again around that time.
Tuesday, March 4, 2003 8:27 AM CST
YEAAAHH! Another 90 days gone and Kaylee is doing great! All of her tests came back good yesterday (ultrasound, chest x-ray, blood & urine tests). Our next round is June 2nd....then they'll only do chest x-rays and blood work. Although the xrays and blood work are every 3 months,they will only do the full abdominal ultrasounds every 6 months which really surprised me because I thought that it was every 3 months for 2 years and then every 6 months for 3 years. It turns out that it's every 6 months for 2 years and then once a year after that for 3 years. Well, guess that's it for now....Kaylee looks great (she's 41" tall now and 36 lbs.)and she's doing super in school/daycare. Hopefully I won't have anything to tell until the next set of tests but I'll try and put on a more recent picture soon. :)))))))))
tammy
Friday, January 17, 2003 at 09:06 PM (CST)
Hi everyone! I haven't posted in awhile because there's really nothing new...no news is good news! Kaylee is doing real good, no problems to speak of other than she has a cold. She's getting taller and she is filling out more so she looks healthy. She hasn't really put on any weight yet, she's still 35 lbs (I think that she was 33-34 lbs during treatment). She's been going to daycare and learning alot and just enjoying life like any other 4 year old. Her next round of tests are at the beginning of March so hopefully you won't hear from me again until they are done. All is well at the Parker homestead! :) Hope everyone has a healthy and happy New Year!
tam
Saturday, November 09, 2002 at 11:35 AM (CST)
Well, our Disney trip was absolutely amazing. It is truly beyond words how giving these people are....Our trip started when a stretch limo picked us up and took us to Atlantic City airport. We were unable to stay at the Give Kids the World complex so we stayed at the Contempory Hotel (which was GRAND...only steps from the Magic Kingdom!). We were on the 12th floor overlooking the pool and lake. Kaylee got a pin to wear which enabled us to go to the front of all the lines for rides and to meet the characters. Jodi & Rich(Contemporary Guest Relations) set it up so that we could go backstage and meet Belle after the Beauty and the Beast stage show. They also had birthday balloons and gifts sent to our room on Kaylee's birthday. They also gave her pictures of the characters and each picture was signed by them. I can't say enough about everyone's kindness! We also had passes to Universal Studios and Sea World so we spent a day at each of those parks. Make A Wish provided a rental car so that we could drive to these places. We spent some time at the Give Kids the World complex-it's beautiful. It's like a big park in itself. There's a great big icecream parlor where kids are served free ice cream all day long, and volunteers serve breakfast and dinner everyday. It was a trip of a lifetime...Kaylee was treated like a queen everywhere she went (now that we're home, she's QUITE disappointed that there isn't something going on all of the time!) THANK YOU FROM THE BOTTOM OF OUR HEARTS TO ALL WHO MADE IT SUCH A BEAUTIFUL TRIP FOR KAYLEE!!
Monday, October 21, 2002 at 05:22 PM (CDT)
Hi everyone,
We missed Kaylee's appointment last Monday (we thought that it was this Monday!). Her oncologist is on vacation until the beginning of November and we're leaving for Disney on the 2nd (YEAH!). We'll have to take her up when we get back. Make A Wish came through for us so we're leaving out of Atlantic City airport on the 2nd and returning on the 7th. Kaylee's 4th birthday is on the 6th so we get to celebrate it with Mickey. I'll be sure and tell you all about it. Meanwhile, we're all fighting colds (it seems that everyone that we know is!). Kaylee has been coughing and sneezing for about 4 days but she hasn't got a full blown cold yet. Jim and I are both suffering though. At least we'll all be better for the trip (hopefully!). I'll write more when we get back.
tam
Monday, October 07, 2002 at 06:44 PM (CDT)
Hi everybody! Just checking in to say that Kaylee's doing pretty good. She isn't a big eater so she hasn't put on any weight yet. Yesterday she was running a fever for some unknown reason but it went away through the night. She's doing really good in daycare. They actually have her in Pre-K class (which she'll also be going to next fall). The class is small with only 5 kids so she gets alot of one on one attention. She really enjoys it. The Make A Wish Foundation representatives came over last Friday...they don't know if they can grant Kaylee's wish to go to Disney over her birthday because it's only a month away but we'll see. It sounds like it will be quite memorable for all of us....we can't wait! Kaylee has a checkup with the oncologist at the end of this month so I'll update with any news. She's not getting any scans or anything, just a general checkup. That's all for now.....:)
tammy
Friday, September 20, 2002 at 06:47 PM (CDT)
Hi everyone. Yesterday I practically wrote a book on here and for some reason, it didn't show up, so here I go again...It's official, Kaylee's port is gone!:) We had to be at the hospital by 7:00AM and we were home by 1:00. For once, everything seemed to move right along and we didn't have to wait for hours. They gave Kaylee the "giggle juice" which made her look like she had about 10 beers....she was looking into space and laughing at every and anything. Needless to say, she didn't care at all when they took her to the operating room. They didn't give her an IV until she was asleep which was great. (When we got to the hospital, Kaylee said,"I won't cry when you put the emla cream on". (She always knows that once she sees that numbing cream, there's a shot in the near future). She was thrilled when we told her that she wouldn't need any cream, no shots. The procedure only took about 15 minutes, simple and straight forward is what the doctor said. They cut along her old scar and put that tape on it (rather than stitches). That should wear off in the next week or so. She hasn't complained at all of pain, she just says that it's a tiny bit sore. The first thing that she talked about when she was in the recovery room was, "Now my ports gone so I can go back to school!" We're going to send her back October 1st.
We won't be taking her back to the hospital for about 5 more weeks, and then it's every three months so my updates will be less frequent. I will update with some new pics and let you know how she's progressing though. Thanks again to everyone for your your kindness...cards, gifts, prayers, offering to help us in any way. It really helped us all through her treatment. Hopefully now Kaylee will remain healthy and enjoy life just like other 3 and 4 year olds. I guess that's all for now.........
tam :)
Friday, September 13, 2002 at 05:28 PM (CDT)
Hi! Well, it looks like Kaylee goes to get her port out on Thursday. We have to call the night before to see what time to have her there. It's same day surgery so we should only be there for the day. As funny as it sounds, I'm scared to death to have it taken out...We always thought that it would be a big relief once Kaylee was done with chemo but it isn't...now we are no longer fighting it, just waiting to see if it rears it's ugly head again. Hopefully we're done with it! Time will tell.......I'll let you know how she makes out with the port removal.
tam :)
Monday, September 09, 2002 at 04:09 PM (CDT)
GOOD NEWS!!!! Kaylee got her CAT scan, ultrasound, and chest Xrays today and all were clear! The lymph node that was enlarged near her diaphram is no longer enlarged and everything looks good. Kaylee was a real pro through the all of the testing...she did get instantly sick again though when they put the contrast dye into her port. She does fine drinking it but for some reason she instantly throws up when they inject it. Last time she threw up in my lead apron so this time we were prepared and had a dish. She felt fine just as quick as she threw up! Anyhow, they are going to call us this week with the day and time to go get her port removed YEAH!!!!!! It should be next week sometime, I'll let you know. She still hasn't gained any weight though (she's 33 lbs) since we started but she's grown about an inch so they want us to come back in 5 weeks to check and see if she's gaining weight. She is still eating like a horse...I honestly don't know where she puts it sometime! Hopefully she'll start gaining now that she's done with all of the chemo. That's it for now....we couldn't have asked for anything better. I'll update and let you know when she gets the port out. (Miss Maureen, if you read this, let Kaylee's daycare teacher and friends know that she's coming back soon to terrorize them!) She's ready! :)
tam
Wednesday, August 28, 2002 at 09:06 PM (CDT)
Hi everybody! Kaylee's been doing really great! She hardly had any side effects from this last chemo. Her blood counts were fine, and she's eating alot! She gets all of her tests done in 12 more days...we should find out the results the same day and I'll let you know! :)
tam
Tuesday, August 20, 2002 at 05:04 PM (CDT)
Hi everybody! Kaylee is doing surprisingly well with this last round of chemo. She was only sick the first day and since then she has been eating, and eating, and eating! Hopefully she'll put a little meat on her bones! We had blood work done yesterday and it came back good (low, but good by chemo standards). If we get through this week okay, we should be home free as far as her blood counts. We have to take her up Monday again for more blood work so I'll let you know if anything happens. Otherwise, you'll hear from me in about 3 weeks when we get all of the tests done.
tam
Monday, August 12, 2002 at 06:45 PM (CDT)
Hi everybody...well, we got our last chemo today! We kind of had the wind knocked out of our sails though...When going over her follow-up treatment protocol, we found out that Kaylee has (had??) an enlarged lymph node in her diaphram area. It couldn't be surgically removed at the time I guess because there are so many lymph nodes in that area that it would be next to impossible to find. They did take measurements of it to compare the scans that she will be getting. Jim and I can't believe that we never knew about it...we thought that everything else was normal and that they removed the cancer.... So we go back in 4 weeks for a CAT scan, ultrasound, and chest Xrays. If it is still enlarged, they are going to "keep an eye on it". If everything shows up okay, then we make an appointment to have her port removed which is same day surgery. It really ruined what was an exciting day for us. Now we have to sit on pins and needles for the next 4 weeks until we find out if she's clear. I'll let you know how she makes out with this last dose of chemo.
tam
Friday, August 09, 2002 at 10:34 AM (CDT)
Hello! The home nurse just came and deaccessed Kaylee's port. We're all done with the IV meds now-YEAH! Now we're waiting for Monday to roll around for her last chemo treatment WAHOO!!!! She's feeling real good, no fevers or anything. She's been doing so great with everything...she amazes us. I'll let you know how she makes out with this last dose. She gets the Doxirubicen this week and that's what really dropped her blood counts last time...we're hoping that her little body holds out good this time. I'll keep you updated!
tam
Sunday, August 04, 2002 at 03:33 PM (CDT)
Hello...Doctor Jim and Nurse Tam reporting in......We made it home last night and the home care nurse came this morning. It's a bit nerve racking because there seems to be so much that we could do wrong but I'm glad we're home anyhow. I managed to get her unhooked this morning with no major problems. I think I'll have Jim perform the duty tonight. We have to give her the IV meds every 12 hours through Thursday evening. She's doing real good though, maybe a little worn down like we all are from spending the week in the hospital (or hostible as Kaylee calls it!). Hopefully we'll do everything right and she won't get another infection. If all goes well, you probably won't hear from me until next Monday (the 12th) when she gets HER LAST CHEMO TREATMENT!!!!! :))))))))
Tammy Parker, RN :)
Saturday, August 03, 2002 at 04:18 PM (CDT)
Well, today was a real roller coaster ride.....we were supposed to get out at noon and at 10:30 the nurse came in and said that the home care people didn't have anyone to come to the house over the weekend so we would have to stay until Monday. Then she came back in around noon and said that she got a nurse for tomorrow morning but we'll have to get her dose here tonight at 8:00. It takes 3 hours for the meds so we won't leave here until around 11:00 and get home around 12:30. Then the home care nurse is coming to our house at 9:00Am tomorrow to show us how to administer the IV drugs. She just had her port needle changed so we just have to hook her up and flush the line when it's done....this will be quite interesting....a nurse I am NOT!!!! But I'll learn quick if it means that we can be home. We have to give her meds every 12 hours through Thursday evening and then she's done. Then on Monday we go for her last chemo.........YEAH!!! I'll let you know how we make out with everything.
tam
Friday, August 02, 2002 at 03:45 PM (CDT)
Well, the doctors say that hopefully we'll get out tomorrow. At 4AM tomorrow morning it will be 48 hours since her blood culture. If nothing shows up, we get to go home and give her IV meds through next Thursday. If it shows up positive again, then we'll have to get the port out (let's just hope we're getting out of here tomorrow!~!!!!!! That's all for now. I'll let you know what happens tomorrow.
tam
Thursday, August 01, 2002 at 11:34 AM (CDT)
Well, the doctors came in this morning and apparently her second blood culture came back positive for staff infection. They can't pinpoint what the bacteria is but it's the same one that the first culture grew. It did however, take 48 hours for it to grow out so the antibiotics must be slowing it down at least. If her next blood culture still shows the infection, they are going to take out her port. That is same day surgery and she'd just get her last chemo treatment through IV. If the staff infection doesn't show up in the culture taken last night, then she'll have to be on antibiotics through next Friday. In any case, we're not out of her until at least Sunday or Monday....if the culture comes back positive it will more than likely be Tuesday or Wednesday. They won't let her leave until she gets a clear blood culture. I'll let you know how the next few days go................
tam
Wednesday, July 31, 2002 at 09:11 AM (CDT)
The doctor was in this morning and said that Kaylee will need to be on IV antibiotics for 10 days which will be until next Thursday. They still don't know which antibiotic will kill the infection, so until then, we won't know if we can get home care. (If she needs antibiotics every 4 hours or so, we wouldn't be able to go home but if she can get it every 8 hours, we may be able to get out Friday). I sure hope so! We just have to wait to find out about the antibiotic needed. Kaylee's chipper cheery and doing good....no fevers or anything. She just got unhooked so we're going to get dressed and go cruising in her favorite buggy through the hospital. I'll let you know when we find out anything new....... :)
tam
Tuesday, July 30, 2002 at 11:48 AM (CDT)
Hi everybody. Kaylee's doing good today...she isn't running a fever and she got her blood transfusion last night. They are keeping an eye on her counts though because this week they will probably be dropping from the chemo treatment last Monday. If they go real low, she'll have trouble fighting the infection. They are testing the blood culture now to determine what kind of bacteria that it is so that they know what antibiotic to treat it with. They should know by tonight I believe. Once they know that, they can determine how aggressive of treatment she'll need (ex. every 4 hours, 6, or 8). If she can get the more infrequent treatments, I'm going to try and get home care so she can just get hooked up at home. The doctor said that it would be the end of the week before we can leave regardless. Kaylee's down in the playroom painting a spider right now, so she's doing just fine. That's it for now! :)
tam
Monday, July 29, 2002 at 07:02 PM (CDT)
Well, it looks like we're in for 7-10 days after all. Kaylee's culture came back positive for infection. They changed her antibiotics tonight to a stronger kind until they determine what kind of infection that it is. BIG BUMMER........They say that 9 times out of 10 these fevers are nothing and the testing is just precautionary but so far we're 2 for 2. I'm going to see if we can get switched to home care once her cultures come back clean because they were considering that the last time she had a line infection. She still didn't get her blood transfusion but they're supposed to be doing it anytime now. I'll keep you updated... :(
tam
Monday, July 29, 2002 at 04:02 PM (CDT)
Well, we're back up at the hospital. Kaylee was running a fever yesterday above 100.5 so we had to have her admitted so they could give her IV antibiotics. They did a blood culture last night around 8:00 and it takes 24-36 hours for anything to grow. If anything grows, then it could be an infection in her port which requires 8-10 days IV antibiotics. The doctors seem to think that it's viral though so lets keep our fingers crossed. If nothing shows up, we'll get out tomorrow morning. Her hemoglobin is a little low so they are going to give her a blood transfusion this evening. She is still running a low grade fever but it's not high. That's about it for now....
tam
Monday, July 22, 2002 at 05:19 PM (CDT)
Hi everybody! Well it sure was a long day of tests and chemo. We left at 7:00AM and just got home at 4:30. Kaylee had an ultrasound, EKG, echocardiogram, urine test, and chemo. All of the tests came back good!!!! We didn't hear anything from the urine test yet but that was taken as precaution to make sure that she doesn't have another infection. She got Vincristine and Doxirubicin today. ONLY ONE MORE TREATMENT LEFT!!!! YEAH! I have to get weekly blood work done (hopefully this drug won't make her counts fall like the Dactinomycin did for the last treatment). Then in 3 weeks we go for the last dose of Vincristine and Dactinomycin. I will have to take her for blood work for the following 2 weeks after that, and then she goes back for either an ultrasound or CAT scan, depending on which the doctor orders. Then if all is good, she gets her port out which is same day surgery.....FINALLY, light at the end of the tunnel. After that, we'll have to go back in 3 months and then they start extending the periods in between checkups (I'm going to push to keep them every 3 months though for at least the first year). We are getting so excited to not have to put Kaylee through this all of the time. She knows she only has one treatment left and her comments are always one of two things..."Then I can go back to school, right?! (she's going back to pre-school in September)" or "Then we go to Disney, right?!" We want to take her to Disney over her 4th birthday on November 6th and we're working with Make A Wish Foundation to hopefully fulfill her dream! She sure deserves it...she's really been through alot (we wouldn't mind it either! :) That's all for now. HOPEFULLY you won't hear from me again until her last treatment but we'll see how her blood counts hold out.
tam
Friday, July 12, 2002 at 04:37 PM (CDT)
Hi everybody,
We had blood tests done today and her counts are on the rebound. Her platelets are up to 254 already (they were 46 on Monday). They didn't have the complete report because part of the testing needed to be done at Williamsport Hospital, but the results that they had were very good. Kaylee's looking alot better too. She has more color than she's had and the dark circles around her eyes have lightened somewhat. I'll get some updated pics on next week sometime. Hopefully you won't see anything new here until we go for her tests and chemo in 10 days.
tam
Tuesday, July 09, 2002 at 12:06 PM (CDT)
Well I talked to the Oncologist this morning and apparently they don't transfuse platelets unless there is uncontrollable bleeding or major surgery coming up. They don't know if her blood counts are on the way up or down so I have to take her for blood tests on Friday. I'll let you know how she makes out with that.
tammy
Monday, July 08, 2002 at 08:29 PM (CDT)
Well, it seems that we've run into a stumbling block. Kaylee's platelet count dropped drastically since last Monday. Her count was 334 last Monday and now it's 46 (normal is 130-400). The limit that the Oncologist gave us is 75. I have to call the hospital in the morning to see about a transfusion. She's been real tired and when they took blood today we noticed that her bandaid filled with blood and usually it's a pinhead size drop of blood. I guess that platelets help with clotting. We're heading up to Hughesville tomorrow so but it looks like we'll be stopping in Philly first. Who knows, maybe they'll want to wait since she's never had any problems with her blood counts. We'll see....I'll update once I'm in Hughesville.
tam
Wednesday, July 03, 2002 at 06:53 PM (CDT)
Hi everybody! We took Kaylee up to Philly on Monday for chemo. We also met with the radiologist-he asked several questions and checked her spine for curvature which can be a side affect of radiation. Hers is fine so far! Her blood counts are still good so we only have to take her for bloodwork in 10 days rather than once a week. When we go again on July 22nd, she has to have an echocardiogram done (side affect of chemo can be damage to the heart) and an ultrasound to look around and see if everything is clear. Then she gets another ultrasound 6 weeks after that when she completes chemo (YEEEEAAAH!). She's doing good now-yesterday she was sick most of the day but today she's fine. Still hasn't put any more weight on but she hasn't lost anymore either. I guess you won't hear from me for a few weeks when she gets bloodwork done. I'll let you know if anything changes. :)
tam
Thursday, June 27, 2002 at 01:20 PM (CDT)
Hi everybody! The hospital just called and said that Kaylee's blood counts are wonderful! Now we have to go back up Monday for another treatment. She's been doing really good-running around and driving us all nuts (I love it!) I'll let you know how she makes out next week.:)
tam
Tuesday, June 18, 2002 at 05:00 PM (CDT)
Hi everybody! Just wanted to let you know that Kaylee's blood tests came back good! She's been doing real good-not sick or anything. We have to go next week for another blood test to check her counts and I'll let you know how she makes out again! Hopefully we'll be back up in PA within the next few weeks to see everybody. Boy, Aunt Lauralee wouldn't write anything before and now she can't say enough in your guestbook! (Sorry buddy, I couldn't help myself! :) Guess that's all til next week! :)
tam
Tuesday, June 11, 2002 at 06:18 AM (CDT)
Hi everybody! I haven't had much to write in the past few weeks and as they say, no news is good news! Kaylee has been doing good....we went up for her chemo yesterday (only 3 more treatments left, WAHOO! The doctor called as soon as we got home yesterday to tell us that she has another bladder infection though, so we have to start her on medication today and give it to her for the next 2 weeks. Her "bad" chemo dose is now cut in half and the Vincristine dose stays about the same. She woke up this morning full of pep and vigor so hopefully she won't be as sick from it since they cut the dosage back. We have to take her next week and the following week for blood work to check her blood counts-I'll let you know how we make out with that. I'm going to try and take her to our local hospital for labs this time but I don't know what day we'll go. I took her to LabCor last time and it took 3 days to get the results and of course they didn't fax them to CHOP like they were supposed to. Our local hospital has it's own lab so hopefully I can just take her up there. Until then, hopefully you won't see anything new-that means all is well! :)
tam
Thursday, May 30, 2002 at 01:25 PM (CDT)
Hi everyone! Kaylee's blood counts are good (Yeah!). I was worried because she caught a cold, but I guess her body has the tools to fight it off! Even though she's coughing and has a runny nose, she's still very active-we just got back from the park and she rode her bike around the development. As long as she doesn't get a fever (then we'd have to take her to the hospital), I probably won't update again until after Monday June 10th, which is when she gets her next dose of chemo. Thanks again to everyone for the gifts, cards, and prayers-we all really appreciate it! :)
tam 
Sunday, May 26, 2002 at 04:15 PM (CDT)
Just a note to let you know that Kaylee is doing GREAT! She hasn't been sick to her stomach once since we left the hospital. She's been sneezing and has a runny nose today so I don't know if she caught my cold or if she has allergies...time will tell I guess. I've been trying to get our house into some kind of organization since it's been neglected for awhile so I haven't had time to take pics of Kaylee. I'll do it tomorrow and get them on her site. I'll let you know how she makes out with her blood counts on Wednesday. :) Kaylee on her new swingset which was bought by Jim's friends at the Lobster House...THANK YOU!! :)
tam
Wednesday, May 22, 2002 at 06:58 PM (CDT)
Well, we finally made it home today! As usual, there was miscommunication between the doctors and us. Kaylee only got 6 days of radiation instead of 7. They told us that she needed a total of 10 gray (some for unit of measure that we don't even understand) which was to be given at 1.5 gray a day for 7 days which would be a little over 10 gray. Now they said that it was always scheduled as 6 days of treatment and we must be confused because of Monday's cancellation due to Kaylee being sick. The nurses double checked with the radiologist and he says she's done so I hope that they got it right. Kaylee didn't get sick all night last night but right after the doctor said that she would discharge us (and left the room), Kaylee threw up all of her breakfast. We think that she'll do much better at home with eating and drinking so we decided to just let it slide and get her home. We'll know soon enough if she isn't getting enough fluids because she'll get a fever if she dehydrates. We have to take her to our local doctor on Wednesday to get blood drawn to see if she'll need a blood transfusion. If her counts come back low, I guess we'll be driving back to Philly for that (it only takes about 4 hours total to cross match her blood and transfuse it so we wouldn't have to stay there I don't think). After that she doesn't get chemo again until June 10th (and every 3 weeks after that until August). I'm going to try and get some new pics on her website within the next few days and I'll update with any changes.....
tam :)
Tuesday, May 21, 2002 at 05:10 PM (CDT)
Hi everybody-Kaylee got a double dose of chemo last night and radiation this morning. She's really sick from it and can't keep any food down (but her spirits aren't down by any means! :) Today she was sleeping and the doctors wanted to examine her so I told them to go ahead....Kaylee woke up and tried to punch the one doctor and when she tried to listen to her heart again, Kaylee rolled over and tried to kick her and told her "GET AWAY FROM ME!"....The doctor went away.....:) Anyhow, tomorrow she gets her last dose of radiation (yeah!). The doctors are going to come in tomorrow and see if she looks and feels any better. If she can start to hold some food down, they'll let her go, otherwise, we're here for another day or two. Kaylee and Jim are down playing in the Atrium right now-she's like the Energizer bunny-Barfs and keeps on going and going.....I'm glad that she has that attitude, that's for sure. I'll let you know what's happening as soon as I know.
tam :)
Monday, May 20, 2002 at 09:23 AM (CDT)
Well, it doesn't look like we'll be getting out tomorrow. Kaylee got sick again this morning so the anesthesiologist wouldn't risk sedating her when she's nauseous. When she goes in for radiology, nobody can be in the room with her and if she'd get sick she would choke. They would need to set her up with a breathing tube but they couldn't get it together on such short notice. The radiation is really beating Kaylee up today-her whole body hurts, her throat hurts, and she's still nauseous. They are going to put her on an IV drip of Sofran (anti-nausea med) every 8 hours to see if it helps. Her blood counts seem to be okay so I think that they are going to give her the double dose of chemo today which won't help matters a bit. I hope that they do give it to her though so that we don't have to come back next Monday for it. That way we can just go home and she won't get more chemo for 3 weeks. I think that she'd do much better at home even if she feels awful-she gets so stressed out when doctors or nurses come in the room and they wake her up every few hours through the night to take her blood pressure and temperature. Hopefully we'll be out of here on Wednesday, but we'll see.......I'll let you know if anything changes.
tam
Friday, May 17, 2002 at 07:25 PM (CDT)
Hi everybody! Kaylee did good again today with radiation-she was wound up all day and didn't even take a nap! Both of her blood cultures came back with Staph infection so it wasn't a contaminated sample. It was actually a stroke of luck that she got a fever with the first dose of radiation because the nurse told us that Staph infection spreads quickly and can really make a person sick if it isn't diagnosed right away. Kaylee isn't running a fever or anything right now. They changed her antibiotic today to a stronger kind that needs to be given by IV every 8 hours. We will be getting out on Tuesday after her last dose of radiation and her double dose of chemo. Then we have to have a nurse come to our house and teach us how to do the IV drip every 8 hours until Saturday. This will be REAL interesting.....Nurse Tammy, who would have ever thought it? I get queasy at the sight of blood and all but pass out when I see a needle-I'm just PERFECT for the job! hahahaha! We've overcome alot of obstacles since this has happened so I'm sure that all will be fine, just makes me laugh though. I'll let you know how she's doing-so far, so good. :)
tam
Thursday, May 16, 2002 at 01:58 PM (CDT)
Kaylee did excellent this morning with radiation. She woke up quickly and IN A GOOD MOOD!! We couldn't believe it because she's usually mean when she comes out of the anestesia but we're not complaining! :) Kaylee's tired alot probably partially from the radiation and partially from the Benedryl drip that she gets but we had a fun morning-we went outside and fed the pigeons and played in the atrium. Her and her Dad are sleeping now. If I have anything new to tell, I'll let you know. If you haven't checked her site in a few days, you might want to click the "History" tab to catch up because I did a few updates yesterday. :)I don't really have further info on Kaylee's blood cultures yet because we haven't seen a doctor today. Yesterday when they tried to admininister the first dose of antibiotics, Kaylee had an allergic reaction and her whole body turned flame red and stung and itched. So now they have to give her benedryl by IV first and then they slowed the antibiotic drip down from 1 hour to 2 hours. She has to get these every 6 hours for 10 days, so I think that the only way that we'll get out of here before next Friday is if the tests come back with a strain of bacteria that can be treated with oral medications. That way we would be able to leave on Tuesday and treat her ourselves.
tam
Wednesday, May 15, 2002 at 03:40 PM (CDT)
Kaylee's very tired today and had problems with her port so they had to take the needle out and try two others before it would work right. Other than that, we're all hanging in there.....That's about it for now-I'll write more if anything changes.Wow! Two updates in one day (if you missed the other one, click on the "history" tab). It looks like we'll be here until at least next Tuesday. Since Kaylee was treated with antibiotics on Monday night when she was first admitted, they have no way of knowing whether a negative blood culture would come back due to no bacteria being detected or if it is undetected because of the antibiotics. (Another blood culture was taken this morning and hasn't come back either way so far). Therefore, she needs to be treated for 10 days with IV antibiotics. The doctors are going to look into home care so that we could leave on Tuesday and get her IV antibiotics at home but they aren't sure of what's available for Cape May County. If there isn't anything available, I suppose that we'll be here until next Friday (either that or we'll have to drive up every day???). They said that they'll be able to tell us more once her original blood culture is diagnosed with a specific strain of bacteria. They are also going to watch her blood counts and see what goes on.
tam
Wednesday, May 15, 2002 at 09:25 AM (CDT)
We did get to stay at the Ronald McDonald House last night and it was real nice. We had a problem with the air conditioner though-Jim put it on low to try and move some air and all three of us woke up with sore throats so I think that it must have had mold from sitting all winter or something. Despite that, Kaylee was so excited to go to the zoo today-then we had to shoot that idea down. Poor kid......she seems just as content playing in the playroom though so I guess it bothers us more than her. I'll let you all know if her cultures would come back positive (hopefully not-then we'd be here 1-2 weeks!!:(Well, it looks like the zoo is out for today. When we brought Kaylee in for radiation this morning, the oncologist called and said that her blood cultures came back positive for infection. We have to stay in the hospital at least 2 days until the new blood cultures come back. They think that it is a false positive which is when bacteria from your skin gets into the needle and contaminates the blood sample. It took 30 hours for it to show infection and usually if it is an actual infection it will show up in 12-24 hours. They also said that if it was an infection of her line, her blood pressure would be low and she would be feverish. She hasn't had a fever since yesterday morning and her blood pressure is fine, so hopefully we will be out of here on Friday. They are going to continue her radiation treatments. She's been doing excellent with that since they have been giving her anti-nausea meds prior to anesthesia.
tammy
Tuesday, May 14, 2002 at 09:31 AM (CDT)
We got into the Ronald McDonald house and Jim said that it's GORGEOUS. Kaylee and I have been stuck at the hospital so we haven't been able to see it but maybe today will be our lucky day...The McDonald house also gave us free tickets to the zoo so we'd like to take her there tomorrow. I'll try and let you know as soon as we find out anything else. :)Hi everybody! We ran into some difficulties yesterday with Kaylee's radiation treatment. They never got her in for treatment until 4:30 in the afternoon so she didn't have anything to eat since Sunday and she hadn't had anything to drink since yesterday morning so she was dehydrated by the time that they did treatment. When she came out of anesthesia she got REALLY sick to her stomach and her temperature went up to 103 degrees so they admitted her to the oncology unit. They took blood cultures to see if her port is infected but the results won't be back until around 7:00 tonight. Meanwhile, they have her on IV antibiotics as a precaution. They gave her a blood transfusion through the night since her tests yesterday came back that her hemoglobin was still a little low. She went for radiation at 7:30 this morning and this time they gave her anti-nausea meds prior to the anesthesia. She woke up rather MEAN but once again she's done a 180 degree turn around and is now playing with "Thomas the Trains" down in the playroom. She's fine today and doesn't have a temperature so we're hoping that they'll release us but the nurse seems to think that they'll keep us for 48 hours until all of the test results are back.
tam
Tuesday, May 14, 2002 at 09:17 AM (CDT)
Monday, May 06, 2002 at 05:26 PM (CDT)
They did her blood counts today and they were good but her hemoglobin is a hair too low for radiation. It is 9.9 and it needs to be at least 10 to do it, so on Monday we have to be up there at 9:00AM to do blood work. If her hemoglobin level is still too low, she'll have to have a blood transfusion right away because her radiation is at 3:00PM on Monday. Monday she has radiation so late in the afternoon because they have to run another simulation before they actually do it. We'll be up there all week for radiation-she'll get it at 7:30AM Tuesday, Wednesday, and Friday and 8:30 on Thursday. Then we come home for the weekend and take her back Monday and Tuesday to finish the radiation. We also got good news about her chemotherapy-now she only has to get it every other week for 2 cycles and then it goes to every THREE weeks!! We're really glad because as tough as Kaylee is, it's starting to take it's toll. She lost a little more weight this week-she was 34 lbs. when we started and now she's around 29 lbs. She's been eating ALOT lately but she also grew 2 centimeters so all of her nutrition must be going toward her growth spurt. Her hair is mostly gone in the back but it's still staying in pretty good on the sides and front. Other than that though, she's very energetic, not sick, and is in good spirits! She amazes us every day especially when you talk to other parents who have children with Wilms-there are sooo many complications that we haven't had to deal with. We're very lucky! That's all for now....Hi everybody! We spoke to the surgeon today about Kaylee's pathology report. They tested her lymph nodes that he removed and they were normal so it didn't spread (YEAH!).
tam
Friday, May 03, 2002 at 04:54 PM (CDT)
Hi everybody! Everything went okay today-it was totally nerve racking but we got through it. They decided to access Kaylee's port prior to putting her under and they didn't give her any "giggle juice" so she totally freaked out-that's the hardest part when they do things that hurt her. Then we had to carry her into the radiation room and Jim held her while they pushed in the anesthesia-neither one of us can take that very well. Then we had to go wait in the waiting room for about 40 minutes while they marked her for the radiation. She has all kinds of marker lines on her stomach and sides so the tattoos must be in the marker lines (we didn't see them). Then we had to go back through the long underground hallway that takes you from University of Penn to CHOP. On the way over she wasn't breathing right and they had to stop and work on the oxygen (it might be "normal" for the doctors but it put me into fits!). Then they took her into the recovery room and we had to wait in the hallway for them to call us. They didn't take the port needle out while she was under so then we had to deal with getting that out. But, as usual, Trooper Kaylee took it all in stride after she woke up! She wanted to go to McDonalds and get a prize from the hospital gift shop. Anesthesia doesn't seem to bother her too much-she comes out of it pretty easy and doesn't get sick or anything. Now we have to go up on Monday for chemo again (just the weekly vincristine), and we have the rest of the week off (hopefully!). I have to schedule a checkup with the surgeon to check out her surgery cut but hopefully that can be done when we go up on Monday. That's all for now!
tam
Wednesday, May 01, 2002 at 04:28 PM (CDT)
Well, today was another day of foul ups, but part of it was my fault. Kaylee got up this morning and got really sick with dry heaves and asked me for some toast. I COMPLETELY FORGOT and gave her some. She got about 2 bites out of it and I remembered that she wasn't supposed to eat this morning. I didn't think that it would be that big of a deal since it was such a small amount and she ate it at 7:00 this morning but of course, it was. They wouldn't do the procedure because it had only been 6 hours since she ate-they said if it had been 8 hours they would have done it. When we got there it was the same old chaos...we got to same day surgery and they said that someone just called and ordered an echocardiogram be done before they do anesthesia (guess they didn't think of that last week when she was put under in the same exact place). So we went down to the 3rd floor and of course nobody knew what we needed down there so they had to call them. The lady that gave her the cardiogram said that we would need an EKG but she called and they didn't have orders for that. She said that we would be back because the two of them go hand in hand. Miraculously we didn't have to go back down there (at least not yet). Then we get the news that our oncologist has been telling us the wrong week for Kaylee's radiation. It isn't next week but the following week. So now we have to reschedule for Ronald McDonald house. They couldn't schedule her radiation setup on Monday when we will be up there for chemo-instead we have to go back Friday. Then they decided that she needed labs done (even though the girl told me that it was fine that they didn't draw labs before chemo yesterday). Well, of course, her port was clogged, so they sent us to the Wood Center to Oncology to have blood drawn from her arm. Then we needed someone to fix her port so we waited for that. Here, the needle was dislodged and once it was pushed in it worked fine. I wish that they would have tried that first before they had to poke her with a needle again. Another frustrating day....at least we all get a day of rest before trying it again. (The hospital called and said that Kaylee's counts are good so there was a bright spot in our day). That's all for now.:)
tam
Tuesday, April 30, 2002 at 07:43 PM (CDT)
Hi everybody! Well, we made it home today (finally). I've never seen such disorganization in my life. On a scale from 1 to 10 (10 being the best), the oncology floor and ICU unit were a 10 when we stayed there. The surgical floor where we were at this time was a 1. I would have to write the equivalent of a dictionary to list everything that went wrong but I'll just tell you about today. They kept us in the hospital for the past 2 days because they were waiting for her urine culture to come back so that they could give her a medicine that fights the exact bacteria that she has. Yesterday it came back with several bacterias so they wanted another sample to send to the lab. They told us that we'd have to wait until the tests came back today because they didn't want to give her a general antibiotic because her body can form an immunity to certain viruses or bacterias (something). Anyhow, the doctor came in this morning around 10:30 and said that we could leave. I asked how the tests came back and he said that they didn't yet-they were going to put her on Bactrum which is a general antibiotic which she's already been on since she started chemotherapy. So why we've been sitting there for the past 2 days, I don't know. Then I asked about her chemo which she was supposed to get yesterday and nobody knew anything-some said that she would get it and others said no way, that chemo is never given within 7 days of surgery (which I KNEW was wrong). I asked the resident doctor on the floor if I was supposed to try and find out about her chemo on my own and he said, "Yeah, it'd probably be a good idea-I paged the oncologist yesterday but she never got back to me". I rolled my eyes and walked away and he stopped me and asks me if I have the oncologists phone number (yeah, I have it tattooed on my butt idiot-try looking in the hospital rolodex). Then the nurse asks who he's looking for and he says "I think Dr. Kong, well, it's Tammy KANG, that's probably why nobody called him back! Anyhow, they come in and tell us that she is getting her full dose of both chemos today-the one kind really brings down her blood counts. I asked the nurse last night to do blood work because Kaylee was so white and that could mean that her hemoglobin is low. She called the oncologist twice, they never got back to her and she left. They never even did lab work on her prior to chemo. They do this EVERY SINGLE WEEK to be sure that her counts are good and if there was ever a time that they wouldn't be so good, it would be after this surgery. They hadn't checked her blood or urine since Friday. We have to go up tomorrow to get her set up for radiation. Nobody could tell me a thing about it. That was another wild goose chase-I had to track down the radiation department at Pennsylvania Hospital and then the Anesthesia department in CHOP to try and coordinate it myself. Anyhow, it was just one blunder after another-our entire week was the same way as today. We have to be up there tomorrow at 1:00 I was told today but there was a message on our phone to be there at 12:30 (I guess that we take the average and get there at 12:45?haha). They have to put her under and do the tattoos (yes, real permanent tattoos!). They said that they are only tiny dots but the way things are going she'll probably come out with a skull and crossbones tattoo! Then we are done until Monday when we have to go stay for the week for the radiation. Kaylee is doing fine though so far-they gave her Sofran (anti-nausea med) in her IV with the chemo so hopefully she won't get sick until Thursday but I have a feeling that the anesthesia tomorrow may help things along faster than usual. I'll let you know how we make out----HOPEFULLY it will be alot better than we have been doing! :)
Monday, April 29, 2002 at 03:20 PM (CDT)
Well, it looks like we're here for another night. Kaylee's tests came back with several different types of bacteria so they needed another sample to send to the lab. They want to pin point the infection so that they can give us the correct antibiotic for the infection. Meanwhile, she is getting a general antibiotic via IV every 8 hours. We went over to the Wood Center and talked to her oncologist and she said that she will get chemotherapy tomorrow. We'll see if that changes between now and then......sure is frustrating!! That's all for now. :)
tam
Monday, April 29, 2002 at 09:22 AM (CDT)
Hi everybody! Well, we're still in the hospital. Kaylee got a urinary tract infection (probably from the catheter). They have her on IV antibiotics-she's had three doses so far. We don't know if we are getting out today or not-it all depends on which doctor that you talk to. We've gotten so many conflicting statements all week-we are totally frustrated with the lack of communication on this floor. Both of Kaylee's IV's clogged so they ended up accessing her port anyhow. We are waiting to see if she is getting her double dose of chemo today or not. The surgeon said yes, more than likely and the doctor that does morning rounds said that it was being delayed until the infection is cleared up. Are you confused???So are we! She isn't drinking enough but she is eating good today. We are waiting for her to pee so that they can test it (Jim forgot to put the bowl in the toilet this morning when she went :(!!! Anyhow, Kaylee has lost some weight but she is doing real good- she is running all over and pushing her "boo-boo" bear around in the wheelchair. If we are in until tomorrow I'll try and get up here to update.
tam
Saturday, April 27, 2002 at 01:10 PM (CDT)
Hi everybody! Kaylee is still doing okay. She needs to have a bowel movement and eat something before they will release her. Today she tried to eat two chicken nuggets but she got sick and threw up right away. Her stomach swelled up alot last night and it is still swelled today but not as bad. She's real weak from being in bed so we are trying to get her up and walk around a little (easier said than done!haha). They removed her catheter and one of her IV's today (yeah!)-at least now she can use one of her hands. I'm still fighting with the doctors for information as to whether she can get her chemotherapy tomorrow instead of Monday. That way we won't get released tomorrow and have to turn around and drive back up on Monday. Getting an answer from anyone around here has been next to impossible lately. I'll supposedly find out later today whether they'll do it or not. Other than that,Kaylee is still running the show and getting everything done HER way! Nothing seems to make her lose her spunk. That's all for now-I'll update tomorrow and let you know if we get released. :)
tam
Friday, April 26, 2002 at 10:48 AM (CDT)
Hi everybody. Sorry I didn't get to update sooner..things have been hectic and when I did get up here to do it, all of the computers were in use. Kaylee is doing pretty good today. She was all puffed up yesterday from the fluids that they are giving her through her IV but today she looks good. They were having problems with her epidoral yesterday-it was leaking all over the bed but they wanted to leave it like that as long as possible because the IV pain meds would make her tired, where the epidoral doesn't. Last night it must have started leaking worse because she was in pain so they removed it and have been giving her pain meds through her IV. She still has a catheter and and IV in each hand (both hands are taped to a splint so she can't use her hands). I've been trying to get them to remove one of the IV's so that she could at least hold something and play a little. We did get her out of bed today and into a wheel chair which is where she is now. I'm glad that she was agreeable to getting out of bed. She still hasn't had anything to eat since Tuesday. Today is the first day that they even allowed her to drink. She was running a fever this morning so they gave her Tylenol to lower it. Anyhow, she's been a VERY strong little girl so far-I'm so proud of her. We are going to see about getting her chemotherapy before we leave here rather than driving up on Monday-I haven't heard anything yet on that. On Wednesday we have to go get her set up for radiation and then the following Monday we come up for the week. I'll get back up here tomorrow sometime and let you know if anything has changed.
tammy
Wednesday, April 24, 2002 at 01:45 PM (CDT)
Hi everybody-sorry for the delay,all of the computers were being used! Kaylee is FINE! Her surgery went great-she had a couple of extra arteries running to her kidney which is odd but it didn't complicate things much. They also removed a few lymph nodes. The surgery only took about 2 hours. She's slowly trying to get awake but she is all wires and tubes so I'm hoping that she sleeps for awhile. If she gets fully awake, I'm SURE that she'll have a fit about alot of things (she already told the nurses to get the velcro braces off of her arms so she hasn't lost any of her spunk! (The braces are to keep her arms straight so that she doesn't pull anything out). Anyhow, it's been a good day-we're glad that the surgery is over with. They delayed radiation until the week after next so she'll get a little time to recuperate. (Although she still has to get her double dose of chemo monday). That's all for now, I'll let you know if there are any changes.
tammy
Tuesday, April 23, 2002 at 02:33 PM (CDT)
Hi everybody-I called up about Kaylee's surgery and we have to have her there tomorrow morning at 6:00AM. So much for late morning/early afternoon surgery! I'll update tomorrow from the hospital as soon as I possibly can.
Tuesday, April 23, 2002 at 06:07 AM (CDT)
We took Kaylee to Philly yesterday for blood work and they said that her red blood count was low and that she might need a transfusion prior to surgery. We got home and there was a message from the doctor that her counts came back up so thank God we don't have to take her up today. Her blood pressure was also high since we cut her blood pressure dose in half but the doctor didn't say anything about it. Today I have to call the doctors to see what time we have to take Kaylee to the hospital. She's in for a tough ride-surgery tomorrow, double dose of chemo Monday, and she starts radiation on Monday. She was originally scheduled to start radiation on May 1st but the oncologist wants to move it back so that she starts it Monday. Sure seems like alot even for trooper Kaylee! I'll let you know when we have to have her at the hospital tomorrow. I also found out that my brother and his girlfriend were in a bad car accident in Mountain Top(hit a tree)-he's okay but he has a punctured lung and alot of bruises. His girlfriend is in ICU with a lacerated liver and her chest was crushed. It happened on Saturday but when they life flighted them to the hospital, they didn't get any ID out of the car and they were both out of it so we didn't find out until yesterday. Davy might get out today (the doctors have to check his lung first) but Tina will be in for quite awhile yet. NOT a good day!! That's all for now....
tam
Wednesday, April 17, 2002 at 07:09 PM (CDT)
Hi everybody! Kaylee's surgery is next Wednesday-AAAAHHHHH! We're scared to death but ready to get it over with. I'm sure that Kaylee will take it in stride, just like everything else so far. We have to have her up to Philly Wednesday morning for late morning or early afternoon surgery. We won't know until Tuesday evening what time she is supposed to be there. The surgeon said that the operation will take about 2 1/2 - 3 hours if there are no complications. Her tumor is small now and away from her major arteries so it will be alot less risky than if he had done it 8 weeks ago. They are going to skip her double dose of chemo next week but we still have to go up on Monday to get blood work done on her. That's about all for now-I'll let you know what time we have to be there once we find out and I'll update her site from the hospital to let you know how she's doing. :)
tam
Monday, April 15, 2002 at 04:14 PM (CDT)
Well, today was a long day! We left at 6:00 AM and got home around 4:00. We didn't really find out any more today than we already knew-her tumor is alot smaller than when we started. We will get the details on Wednesday. The CAT scan was tough-Kaylee wouldn't drink the juice that had a dye in it so they were going to insert a tube up her nose into her stomach but she decided at the very last minute that she'd drink it. Then when they administered the dye through her port, she got sick and threw up but I guess that they got what they wanted before she threw up the dye. She got Vincristine today which she gets every week-that doesn't give her many side effects. Next week she is supposed to get a double dose of Vincristine and Doxirubicen but if they schedule the surgery for next week, they will have to hold off on the Doxirubicen because that effects her blood counts. If they decide not to delay her treatment, her surgery won't be for 3 more weeks because they'll need to wait for her blood counts to come back up. The problem with that is Jim gave blood on Sunday for her surgery and it won't be any good in 3 weeks so we are going to push for next week. We'll know everything on Wednesday when we meet with the surgeon at noon. Other than that, Kaylee's doing just fine, if anything she's more hyper than usual! Jim says that we are probably the only family that has a child on chemo that won't sleep. The doctors keep asking if she is sleeping alot and we keep telling them NO! We'd much rather have that then her being sick in bed though!! I'll write more on Wednesday when we know all of the details...:)
tam
Monday, April 08, 2002 at 03:24 PM (CDT)
Hi everyone! Today went fairly smooth...Kaylee got vincristine this week which doesn't cause nausea so it's a pretty easy week. Kaylee hates needles as bad as I do, so each week gets a little tougher when they go to access her port. Next time they are going to try freezing spray on top of the numbing cream to see if that helps. They decided to keep her on the blood pressure med until the surgery. Next Monday we have to be in Philly at 7:45 for her CAT scan and then she gets more vincristine at 1:00. We should get the preliminary results the same day but we have to go back on Wednesday to meet with the surgeon and he will tell us the official results and schedule the surgery to remove her kidney. Our oncologist thinks that it will be the last week of April but that week she gets the "bad" dose of dactinomycin so we're hoping that it will be scheduled the week prior to that which would be the 3rd week in April. We're terrified of the surgery but we are anxious to get it over with so the sooner the better. Kaylee's hair is still steadily falling out but it's mostly underneath and is covered by hair along the top of her head. She don't say anything about it but she always has hairs in her mouth and that makes her mad! I'm glad that she's so upbeat-it makes life so much easier for all of us, like I said, she's a real trooper. Next week I'll let you know what the CAT scan showed and on Wednesday I'll know more about the surgery. That's all for now!
tam
Monday, April 01, 2002 at 04:55 PM (CST)
Hi everybody! We just got back from Philly. We met with the radiologist and he went over everything with us. Kaylee will get 6-7 days of radiation and will be put under with anesthesia each time. Her CAT scan is set for April 15th. Once she has that and they can see what is happening inside of her, they are going to schedule surgery for one of the following 2 weeks. Radiation will follow approximately 10 days after surgery. The doctor told us to discontinue one of her blood pressure medications, so now she is only on one which is taken once a day. They are going to try and wean her off of that in the next two weeks. Today was her 7th treatment and she received vincristine and dactinomycin. The dactinomycin was what she got on her first treatment and it made her sick for a few days but they give it to her with sofran (an anti-nausea med) so she should be alright through tomorrow if it does the same thing. The inevidable is starting to happen....her hair is starting to fall out pretty steady now. It is just thinning though, not coming out in clumps. I think that it bothers me and Jim more than it does her-nothing phases her. She's always energetic and upbeat, even if she isn't feeling the greatest. We never did hear a single word about any pain with her two teeth that she had pulled and three fillings. So...it looks like everything is going as smooth as possible! That's all for now....:)
Thursday, March 28, 2002 at 10:11 AM (CST)
Hi everybody. Kaylee did fine today with her surgery to remove her tooth and get fillings. The dentist surprised us though when he came out with 2 pulled teeth, one was the molar and the other was her FRONT TOOTH! I wasn't very happy but it was infected (she bumped it on the bathtub a long time ago)so it had to come out. She's doing great though-already running around the house. I'll let you know how she does on Monday (she gets the nasty medicine along with the vincristine this week).
Monday, March 25, 2002 at 03:10 PM (CST)
Hi everyone! We just got back from Philly and everything went well. Kaylee's tumor seems to be even smaller to the point where the doctor can hardly feel it. This week she got the vincristine again which is what she gets every week. Her feet are flopping slightly from it and she has week reflexes but that's part of the side effects. She is scheduled for a CAT scan on April 15th and then she'll get surgery to remove her kidney within the following two weeks. We go to meet the radiation therapist next week-I'm not sure whether they will make her mold next week or not. (They lay her in some kind of mold so that when she gets the 2 weeks of radiation, she is positioned exactly right). This Thursday she has to go get a tooth pulled and three filled. That needs to be done in an operating room under anethesia because she's NEVER sit still for that! The doctors were concerned that her one tooth would absess if her blood counts fell so it needs to come out. I'll let you know how she makes out with that. Other than that, she's doing fabulous as you can tell by the recent picture that I posted on the front page. It hasn't slowed her down AT ALL! :)
Monday, March 18, 2002 at 04:59 PM (CST)
Hi everybody! GOOD NEWS!! Kaylee's tumor shrunk significantly over the past week! Yeah! It previously showed no signs of shrinking but the doxirubicen must have been pretty good stuff. This week she got Vincristine which she gets every week. The only side effects of that are constipation, nerve pain and joint weakness. So far she hasn't had any side effects from it other than being on meds for constipation. Surgery should be in about 5-7 weeks from now. She is going to get a CAT scan done in 3 weeks to see if they are happy with the progress and if they are, they will do a few more treatments prior to surgery. Kaylee is still her spunky self-she was telling the nurses and doctors what to do today! Thanks again to everyone for your well wishes, presents, cards, notes, everything. It really makes us feel good that there are so many friends and family supporting us. You probably won't hear from me until next week unless there are any changes. :)
Thursday, March 14, 2002 at 09:08 AM (CST)
Well, it's Thursday morning and so far so good! Kaylee got sick a few times on Tuesday through the night but she's a real trooper and was ready for a grilled cheese sandwich in the morning! (That's all she seems to want anymore-grilled cheese, cheddar fish, and cheese doodles!) She's fine today and is as busy as ever!
Monday, March 11, 2002 at 06:24 PM (CST)
Hi Everybody! Thanks so much for all of the nice notes, thoughts and prayers for Kaylee. I read them to her everyday and she just thinks that's the neatest thing! We just got back from the hospital and she's doing good. Her blood counts are good and her blood pressure is good so they are just going to keep her on the same dosages until her surgery. She's on three kinds of chemo and this week she got doxiruben (I think I spelled it right?!), anyhow, she's never had that before so I'm not sure how she'll take to it. The side effects are nausea but they gave her anti-nausia meds through her IV first so she's fine right now. I'll let you know if anything changes. Again, thanks everybody for everything that you've done!!!! We sure do appreciate it.
Thursday, March 07, 2002 at 08:32 AM (CST)
Kaylee's story started on February 12, 2002. We thought that she had the flu but soon found out that it is a cancer called Wilms Tumor. The tumor had ruptured into her pelvis so she needed to have a blood transfusion right away. Then the doctors did a biopsy and cleaned some of the blood from her pelvis and they also surgically implanted a port into her shoulder. For those of you that don't know, a port is a catheter which is attached to an artery to her heart and is completely under the skin. It is accessed with an IV type of needle when she needs chemotherapy or in some cases medication if she's in the hospital. That way she doesn't get poked a million times! She was diagnosed with Stage 3 favorable wilms. This is defined on the Wilms website as follows: The tumor (hers is grapefruit size)is not able to be completely removed surgically or has spilled into the abdomen but the disease is still limited to the abdomen. It is rare and only found in 400-500 children a year in the U.S. but the success rate of treatment is very high at 90%.
The doctors at Philadelphia Childrens Hospital decided that chemotherapy prior to surgery would be best so we are now 3 weeks into chemotherapy. Kaylee is doing quite well with it-only got sick in the morning for a few days. Right now she looks and acts just like any normal 3 year old with the exception of a few surgery scars. I will keep you updated when anything changes. Please keep her in your prayers!
Tammy & Jim
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