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Saturday, May 14, 2005 2:39 PM CDT HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY DEAR ELLA!
HAPPY BIRTHDAY TO YOU!
Wednesday, May 11, 2005 10:12 PM CDT Happy Mother's Day to all the wonderful mother's out there!
Ours was pretty uneventful. I really wanted to go strawberry picking but it thunderstormed all day. So we just hung around. Kelly went with the kids and brought breakfast home so I could sleep in. Jack had a really sweet Mother's Day program at school on Friday. The kindergartners are sooo cute! I feel so proud, privileged, appreciative, blessed, and lucky to be Jack, Ella, and Hank's mom.
Jack turned 6 on Monday. Very hard to believe that he's six years old. How did that happen? We did cake and ice cream over here at the house and he opened presents. He got lots of Star Wars stuff. If I can get my act together we are going to give him a friends party at the moonwalk place.
Ella will be 3 on Saturday. That's even harder to believe! Her Mother's Day Out class celebrated her birthday in Chapel today. (This was a milestone that I wasn't sure she would get to see. I almost started crying about it too.) She has seen her friends get to celebrate at school and she has waited all year long for her turn. She was so excited to wear her birthday crown and get up on stage. It was very cute. When she was going through chemo we celebrated her 1st birthday. I remember she was crawling around in her little blue dress on the dining room table (she would never get by with that now!!!) and I was thinking "this could be her one and only birthday party." Thankfully she's had 2 more birthdays since then.
This is going to be a short update. There's just not much going on other than getting ready for Summer. I have to schedule Ella's next set of scans in June. It will be just a chest x-ray and I'm not sure how I feel about that. We've always done the full abdomen Cat scans. Is a chest x-ray enough?
Please say prayers for all the kids out there battling cancer and other illnesses. Stop by and sign some guestbooks. Your words of comfort mean a lot to families that are fighting.
Love to you all,
Tina
Friday, April 29, 2005 10:29 PM CDT We did the South Austin Relay for Life tonight! Thank you to everyone who donated through her web page!! I am so amazed at the support. Ella raised almost $400 in less than 48 hours. Next year I want to put together a team to relay for the entire 24 hours! It would be fun and I bet we can raise $1000!!!
The relay was at Burger Stadium. There were lots of people with tents for the overnight relay and there was music and food. My mom, who went through breast cancer treatment at the same time Ella was doing chemo, came and walked with us. We walked the survivor's lap with Ella. I held Ella's left hand while she sucked her right thumb. She sucked her thumb for the Survivor's lap and the Caregiver's lap--I think she wasn't too sure about all the people and what was going on. But afterwards she just wanted to play in the middle of the field. She played frisbee with Jack and my mom's friend Jerry. She was so adorable! Just so happy and cute with her purple shirt, her purple bow in her hair and her white socks with purple flowers. Looking at her today you would never know what she went through 2 years ago. She loves her BIG purple t-shirt and she wore it to bed tonight.
When we were driving away she said "Goodbye, Cancer." She meant goodbye to the Relay and the people. But it just struck me as funny. She really doesn't understand or remember any of it. I think, based on Jack's comments, that he only remembers me giving her the neupogen shots. (And isn't that a wonderful memory?) Sometimes I wish Jack and Ella has some memory of the whole ordeal. It's really a mixed blessing that they were too young to remember. I wish they could remember so they could appreciate (is that the right word?) everything that Ella and our family endured. But even still, if they could remember it all, would it matter to them, being kids???
It was pretty powerful to see all the survivor's there and the various ages. I wonder how many were childhood cancer survivors? One woman introduced herself to me and told me that her daughter had a brain tumor when she was 6 years old. She had to have lots of radiation to her brain stem and even though she has some physical limitations, she's 30 now and just graduated from college!
Thank you to everyone who has helped support us during and after Ella's treatment. And thank you for supporting ACS. The money you give will help develop new protocols to save lives.
Please continue to pray for people and the children battling this disease. There are too, too many!!!
We love you all,
Tina, Kelly, Jack, Ella, and Hank
Thursday, March 10, 2005 11:04 PM CST Please say some prayers for Haley Mathis. She's with her family at St. Jude's fighting for a miracle. She was diagnosed after Ella and has been fighting hard ever since. I've added her link at the bottom.
*****
Ella has been running fever on and off since Monday. She'll tell me her tummy hurts then sometimes her ear hurts. It's very worrisome. I took her in today and Dr.Sharp suggests seeing an ENT since she has gone through 2 rounds of antibiotics for an ear infection and it looks like one is either starting or finishing. He gave her a drip of rocefin antibiotic and took blood for cultures and urine for a UA. He pushed on her abdomen and she never winced or acted like it hurt. He said that her stomach could hurt for a variety of reasons and we could run tests but it wouldn't tell us much since it didn't hurt all the time. Then, when we are driving home she cries that her tummy hurts. We have no idea what to think.
We came home and her fever spiked (103) and she told me again that her tummy hurt and this time she added that her peepee hurt too. So we may be back tomorrow for urine culture to rule out a UTI. I feel so sorry for her when she runs fever and feels bad. She went to bed early. Hopefully we'll have a good night.
Ella saw her favorite nurse, Jennifer and gave her a big hug. She cried just a little bit when she accessed her but not too bad. It's weird to say but I miss the clinic and our friends there. They are really wonderful people.
Monday, February 28, 2005 9:03 PM CST Well, I guess I spoke too soon. I thought we were out of the woods as far as sickness but...last Tuesday night Ella came down with the stomach flu. Nasty, gross, yeech! Kelly was at a meeting and she started complaining that her stomach was hurting. She still ate a little bit of dinner but then she started crying because it hurt so much. (Of course, I'm freaking out thinking that she has relapsed. During it all, I even managed to look up "Wilms and Relapse" on the internet. Crazy.) But then when she started throwing up and started to feel better instead of worse, I knew it was a stomach virus. We felt so sorry for her because we know how much stomach viruses hurt. She slept with us that night and she just couldn't get comfortable. She even threw up water all night--she was just miserable. We went through every towel in the house and she ran out of pj's. I couldn't do laundry fast enough. I even had to throw away a pair of tennis shoes! Oh well. She slept alot the next day and started to eat again. It lasted about 24 hours and she even went to school on Friday. So far, Kelly and I have not gotten it.
Last night, while reading bedtime stories to Ella, I heard some thunder off in the distance. She is very afraid of thunderstorms so she ended up in our bed for a while. (It never rained, just thundered a little.) Well, she waited until I was ready for bed to finally go to sleep (about 10:30). Once I layed down, she curled up on my back, sucked her thumb and played with my hair for a few minutes and was OUT.
I can't believe it is March all ready! Kelly and I will celebrate our 10th wedding anniversary this Friday. I can't believe it. We dated for 7 years before that. I looked at our wedding album yesterday and couldn't believe how young and carefree we looked. That was all B.K.---Before Kids! :-)
Thanks for checking on us. We appreciate and are thankful for every one of you and your support. Please say some prayers for all the kids and their families who are battling this horrible disease. And say an extra prayer for those kids and their families whose battle has ended.
Much love to you all,
Tina
Sunday, February 20, 2005 9:59 PM CST Well, we've been the sick house for several weeks now. Ella has had several colds and she's on the second round of antibiotics for an ear infection. I had a UTI that went into my kidney and then we've had a stomach flu that has made the rounds. I think/hope we are finally on the mends. Ella keeps complaining that her stomach hurts which is worrisome however she just had scans so I hope it's from the stomach flu or the antibiotics she's on. Yesterday, she woke up and told us "my tummy hurts". Then she ate a small bowl of cereal, climbed back in my bed and slept for 2 hours. And of course, I imagine the worst.
Hank is walking. He is now 10 1/2 months and he's been walking for a while now. It's so funny to watch his Frankenstein walk. The kids get so excited --"mommy, he's walking!!" He's into everything. He loves playing in the kitchen cabinets and making messes. If the bathroom door is left open by Jack or Ella, he is running towards it to play in the toilet. Sometimes I call him "Visa" because he's "Everywhere you Need to be."
A few weeks ago I went to Garrett's service. It was very emotional. It was a packed house and I was lucky to get a seat. I sat up front with Cynthia, the child life specialist. Behind me I could hear children sobbing. Colleen, his mother did the eulogy--I don't know how she did it. The most touching part was when Garrett's little brother stood up and said a few words. How brave. He said that "Garrett was my big brother. We would play together and he would stand up for me and I would stand right back up for him. He was my best friend and I am going to miss him." Even now when I think about that it makes me want to cry. Please say some prayers for their family. Or stop by and sign their guestbook. What they are going through is unthinkable.
Love to you all,
Tina
PS. To my CB friends and families, I've been reading your sites but not signing the guestbooks. You all are never far from my thoughts!
Friday, February 4, 2005 10:11 PM CST I have sad news. Our friend from the oncology office earned his angel wings this week. He was diagnosed with rhabdomysarcoma in 2003. We spent lots of hours together in the infusion room. I would follow Ella around with the IV pole and talk to his mother and Garrett would play video games. Garrett was a sweet little boy who touched many lives. His mom and dad, sister and brother were very proud of him and his fight. Kelly and I are very sad about this. Please keep the Burnham family in your thoughts and prayers as they journey through what must be the darkest of days.
*******
Ella had clear scans on Thursday!! Yay! She is getting to be such a big girl. Kelly said that she had no problems getting accessed adn when she saw Nurse Jennifer, she gave her a big hug. It was our easiest scan ever. Usually we are there for hours and hours waiting. But this time we arrived at 8:30 and were out by noon. We took Hank with us and Grandma and I went to look for some food. When we went back to the waiitng room they had already called Kelly and Ella back. We walked down the hall to the CT room and she was lying on the table sucking her thumb with Kelly bent over talking to her while the table moved in and out of the "donut". She was clicking her little black Mary Jane shoes together like it was no big deal! It was the cutest thing and an image I'd like to remember.
Afterwards we went upstairs to get de-accessed and Dr. Sharp told us that the radiologist had looked at the scans and it was stable!! He said that he is cautious until he gets the written report and they will call us and fax us the report when it comes in. And he is working on an off-treatment protocol for her since she has that spot on her kidney. I think we will continue to scan her every 3 months this year and he suggested we leave her port in for this year, too.
While we feel we are so lucky and blessed that Ella continues to be in remission we can't help but think about the other kids who are still fighting or who have earned their wings. Please keep them and their families in your thoughts and prayers while they fight on. Thanks for continuing to check on us.
We love you all,
Tina
Monday, November 29, 2004 10:57 PM CST Hi Everyone,
**New pictures added**
I hope you all had a wonderful thanksgiving and this finds you all well. We had the best thanksgiving. We went to San Antonio to a cousin's house and ate, and ate, and ate. There were grandparents, aunts and uncles, and lots of cousins to play with! Jack and Ella had a great time playing outside and barely stopped to eat. Thanks Shelli for having us all!
We put the tree up Sunday and it is beautiful. The past few years we have gone with a fresh tree but this year we opted for an artificial pre lit tree and it is really pretty and amazingly easy (for Kelly) to put up! My favorite part is seeing the handmade ornaments that Jack made in preschool and I'm looking forward to adding Ella's this year. The kids had a lot of fun putting the ornaments up. Of course, all of the ornaments are in one area and low to the ground! Hank is crawling and pulling up every chance he gets...I just hope we can keep him away from the tree for a month!
Last year at this time Ella had one more chemo to go; her last chemo date was December 10, 2003. As I watch her now, a year later, I believe now more than ever that she is truly amazing. Kelly and I have so much to be thankful for --our family, our friends, Ella's remission, my mother's remission, Kelly's job...the list goes on and on. As thankful as we are, we can't help but think about those kids who are still fighting. There are lots of kids out there spending the holidays on chemo and/or in the hospital. One child I ask you to pray for is our friend, Garrett http://www3.caringbridge.org/tx/garrettburnham/. He has relapsed rhabdomysarcoma and continuing to fight. If you get a chance, visit his website and sign his guestbook.
Much love to all,
Tina
Sunday, November 7, 2004 10:39 PM CST Hi Everyone,
We are all doing well. Other than little colds here and there we couldn't be better. We had a busy weekend painting Hank's room and moving Ella into a big girl bed. So far, we are having to lay down with her to get her to go to sleep. In fact, as I type this, I think Kelly has fallen asleep with her! I've updated the photo album with 2 new pictures. Now that I have discovered an easy way to crop the pictures, I will be updating the album more often than once every 6 months!
Hank is 7 months old now. Ella was 8 1/2 months when she was diagnosed. So as I look at him, I can't help but think how little and young she was when she was diagnosed. And of course, now I see that she was trying to tell us in little baby ways that she was sick. When I query on the web about childhood cancer symptoms, I can't find anything on the web about babies with cancer and what they're symptoms are. One of they symptoms is "waking up with headaches." Well, Ella couldn't exactly tell us that!
I have to hurry, Hank just woke up.
Please say some prayers for our friend, Garrett. His cancer is continuing to grow even while doing chemo.
Goodnight.
Tina
Monday, October 11, 2004 9:43 PM CDT Friday, October 15, UPDATE****
Wonderful news!!! Ella's nurse, Jennifer called today and gave us the results of her scans. Ella had no changes!! She still has the small spot on her kidney but it hasn't changed. Yay! We feel such a sense of relief. Hope you all have a wonderful weekend!
Thursday, October 14, UPDATE
Ella had her CT scan today and she did great! We should have results tomorrow. Considering we had to get her port accessed and wait 3 hours it all went smoothly. Ella and Hank were easily entertained for the long wait! I'll post the results as soon as we hear something.
****
It's been a while since I've updated. There's really nothing new to report except Ella has had a horrible cough. I thought it sounded like whooping cough and took her into the clinic for it. The doctor said it was related to a virus or allergies but he did prescribe some antibiotics. I somewhat believe him because Jack had a horrible cough a few weeks ago but nothing like Ella's. Although it would be rather unlikely if it was whooping cough, she hasn't been fully immunized yet because she was diagnosed before she finished getting all of her shots. (We'll start getting her caught up on shots in January, 1 year off-treatment.) Anyway, every night around 11:00 she will wake up, coughing and she can't catch her breath. It's scary for her and for us. She's not coughing much during the day but she used to spit up with it. We're happy that it's starting to finally get better.
She will get scanned on October 14th. This is the longest we've ever gone between scans. It's too long! Kelly and I are going crazy. She complains about her stomach hurting sometimes. And she's too young to fully explain her pain. Could it be from coughing so much? Or the antibiotics? Right now she has a bout of diarrhea so that's good! That at least gives us some sort of explanation. Crazy, isn't it?
So I went to check a friend's website and found out about a little girl passing away in August. Her name is Alexandria and we used to see her and her mother at the Doctor's office all the time. She had leukemia (ALL) and lost her battle while undergoing a transplant in Fort Worth. We didn't see them often at the office but when we did, her mother and I would chat and Ella and Alexandria would play for a few minutes. The last time we saw them, it was just for a moment when they were leaving, Alexandria came back and gave Ella a hug. Alexandria had a knitted scarf on that day, wrapped around her neck. (I don't even think it was that cold outside! Such a little girl thing!) It was really cute! She was an adorable little girl with a cute older sister and it was cute to watch them play and interact. Although I've imagined it, I cannot believe the pain they must be going through as a family. I will be saying extra prayers for their family tonight.
Wednesday, September 1, 2004 9:56 PM CDT Hi Everyone,
Ella has started pre-school! She is in the 2 year old class at Hope Presbyterian Children's Center. She goes MWF from 9-12. It's the same school that Jack went to for 2 years. I remember being so thankful for HCC (Hope Children's Center) while Ella was going through treatment because it meant Jack had a safe place to go away from the craziness of treatment. And his teachers were wonderful! They even visited us when Ella was in the hospital and brought us dinner.
Anyway, I thought Ella would cry but she didn't. Her teacher, Miss Jennifer, said that she had a couple of teary moments when other kids started to cry but she was easily distracted. I'm so proud of her! I hate to have to admit this, but it's another milestone that I wasn't sure she would hit. And look at her now!
We took the kids to Dora on Friday night, compliments of Candlelighters. It was an awesome production and the kids really enjoyed it. (Hank slept through most of it!)
Last week, we visited the doctor's office. I wanted to take Ella there while she was feeling good because usually when we are there she is sick and is really cranky. It's so funny but she doesn't remember a lot of the whole chemo experience. Then we walked through the Green Unit (the Oncology Inpatient unit) to visit some of the nurses. She really had no memory of it. I think Jack's memory of the experience is spotty, too. It's somewhat bittersweet--I'd like her to remember the people more but not necessarily the events. Oh well, I guess I will have to remind her of it all when she's a teenager and wants to do something really stupid. Ha!
Love
Tina
****In another note, I just found out today that one of our friends from the doctor's office has relapsed. Garrett, http://www3.caringbridge.org/tx/garrettburnham/finished up chemo for a brain tumor earlier this year, had his port removed and then found out he had relapsed. I'm just sick about this! I hate what cancer does to these kids and their families! Please keep Garrett and his family in your thoughts and prayers.
Thursday, August 5, 2004 9:32 PM CDT Hi Everyone,
We had a great time at the beach! The kids had so much fun. Ella still asks everyday if we can go back to the beach. I have to say that it was the funnest* time ever!
Jack was really sick the past 5 days. He ran high fever (104.5) with no other symptoms. He laid around the house saying "my brain is telling me to do something fun like go to the mall." (There's really no response to that except, "do you consider going to the doctor fun?") We took him in twice and the doctor drew blood for tests. I don't think it will be anything but viral. He's finally feeling better with his energy and appetite back up.
My mother is finished with her chemo and radiation for breast cancer! She had clear scans last week. Her hair is growing back in and we are all very proud of her. Way to go, Mom!
I can't believe it but Ella is 7 months off treatment! Last year at this time, she had finished radiation and was starting a new protocol. I remember being very scared and nervous about starting the more intensive chemo. And now to see her, she is a healthy, beautiful 2 year old! Talking up a storm!
We are very thankful that Ella is doing so well. But please pray for the many children who are still battling Wilms or fighting to stay in remission. Please say a prayer tonight for Haley, Josh, and Olivia. They are having an especially hard time right now. You can read their stories at
http://www.acor.org/ped-onc/hp/wilmspages.html
To all the CaringBridge families and my "cancer mom" friends:
This website has been a wonderful support system taking the place of any support group during Ella's treatment. Thank you to everyone who signed the guestbook and continues to check up on us! I check the Wilm's Tumor webpages every few days and benefit a lot from reading your entries! Thank you! I feel like I'm in some very special mom's club. Although I didn't ask to be in this club I'm very proud to be a member!
Tina
Thursday, July 8, 2004 9:55 PM CDT Well, it's been a month since I've updated. That means that not a lot is happening and after a year of TOO MUCH happening, a break is nice.
Hank had his scans and they didn't show anything--GOOD. He has grown and changed so much. He's 3 months now and he is cooing and smiling. It's so cute.
Ella is doing wonderful. She has a full head of blonde hair and she is talking up a storm! We will update the photos soon. She had scans last week and there has been NO CHANGE in the spot on her kidney. Yay! We are assuming since there's no change that it's scar tissue. I was worried because of her "toddler diet" where she eats really well one day and then next to nothing for two days. And because she had become really clingy and wasn't sleeping well at night. That's how she was before diagnosis and so I just assume the worst, of course. Maybe I just have to accept that I will be crazy like that for a while. From what I've read on other websites, we cancer moms can be crazy.
We are just having a lazy summer. Finding activities to do with all 3 kids during the day is sometimes hard. Kelly takes the kids swimming in the evenings while Hank and I hang out at home and relax. I really want to take the kids swimming in the day but it's so hot for Hank and I don't know how I would do chasing Ella in the pool while holding Hank. I may just have to get brave and go for it!
At the end of July we go on our family vacation to the beach. We've been going with extended family to Galveston for over 10 years and it's really become a tradition. We didn't get to go last year because of Ella's treatment so we are really looking forward to it!
Then before we know it, summer will be over and Jack will be in kindergarten! It's so hard to believe. The bus will pick him up right in front of our house---he is soo excited about that!
Will update soon,
Tina
Friday, June 4, 2004 3:34 PM CDT Yesterday Ella ran a fever (101.2) so I took her into the doctor's office. Since she still has her port in, they have to do blood cultures to rule out an infection in her port. While she was getting her antibiotic IV, she said she wanted to go on the potty. I took her and she started crying saying that it hurt. So she may have a UTI. I told her nurse and then we had to catheterize her to get a urine sample. She cried and screamed. We both hated it! I haven't heard back on the cultures yet but she seems to be feeling much better today. Good enough to go shopping at the mall with her grandma!
We are going to do a sonogram on Hank next week. This is just to rule out familial Wilm's.
Pray for all the kids (and their families) that are battling cancer. There are some brave warriors out there!
Will update soon
Tina
Thursday, May 20, 2004 9:48 PM CDT I haven't updated in a while so this is very long....We celebrated birthdays earlier in the month. Jack and Kelly share a birthday and Ella turned 2.. It's hard to believe that Ella is 2. I remember last year, thinking that this could be her one and only birthday party. But through the grace of God, she's still with us.
Hank is doing wonderful. The poor child gets sooo much love from his brother and sister he can't get a nap in.
Ella had another scan on May 5. The spot on her kidney has not changed. Her doctor is saying that she is in a "presumed remission." We will scan her every 6-8 weeks for a while. When we went to get her scan done, and I walked into the Children's Hospital, all the emotions and memories of spending so much time at that place came flooding back. It was something about the smell. It's all very strange. Somebody with Candlelighters told me it might be like this after treatment...all of the emotions that you didn't feel during treatment come out because you were so busy just getting through chemo. That's when you have a chance to realize what your child and your entire family have gone through. I'm glad I was warned about this.
The Child Life group and the clinic want to do her Off-Treatment party. It's funny because I remember going to other kid's off-treatment parties and thinking, "I can't wait for Ella's party. That's what we want!" Now that the time is here, it's actually kinda scary because it symbolizes taking another step in Ella's journey. Her last dose of chemo was in December so it's *only* been 4 1/2 months but in some ways it feels like a lifetime. Although I wish it never happened, so many good things have come out of Ella being sick that I'm not sure I would change much. There is still so much good in the world. Ella has taught us to see our world and our lives differently. No matter how much life sucks (and believe me, sometimes it really can!) there is still so much good there.
(Okay, enough of all that.)
We went to Sweet Berry Farms on Sunday in Marble Falls. It's about an hour away. We picked strawberries and blackberries. Or actually, Kelly, Jack, and Ella picked berries. I basically drove an hour to feed Hank and change his diaper! When we got there, they went off to pick while I stayed behind to feed Hank. We are sitting on a bale of hay when his diaper leaked ALL OVER! I didn't even know it had leaked until this lady pointed it out to me. I have never seen so much poop in my life!!! It was everywhere! And of course, I brought extra clothes for the kids but not me.
After picking our berries, we stopped by a Dairy Queen in Marble Falls and ate ice cream and the kids played in the playscape. They had a blast! Jack helped Ella take the first step up into the playscape and then after that she was gone! When it was time to go Kelly had to go up there and get her because she didn't want to leave. Going to a small town Dairy Queen on a Sunday is such a Texan thing to do!
Thanks to everyone who has stopped by and signed our guestbook! (I read the Wilms kid's pages daily but don't always sign the guestbook myself! I look forward to the updates on all the kids and I'm going to try to get better at signing their pages when I visit!)
Tina
Wednesday, April 21, 2004 6:46 PM CDT Hi Everyone!
We are slowly adjusting to life as a family of 5. I don't want to jinx anything but Hank is sleeping about 5 hours at a time at night. Although we are exhausted, getting that much uninterrupted sleep at a time is a nice thing! He had his first check-up today and he's doing well. The pediatrician wants to do a sonogram of his abdomen around 2 months to see if he has Wilm's. I really don't even want to think about that yet.
Besides feeding Hank every 2-3 hours, Ella is keeping me busy. She is into everything that can make a mess. Yesterday, while I was feeding Hank, she dumped a huge box of cheerios on the carpet. Then later, she dumped graham cracker crumbs (the kind for baking) on the kitchen floor. Today, she dumped a pound of powdered sugar on the floor. She was covered in it! Needless to say, I now have a lock on the pantry!
Last week Ella ran fever (103+) and Kelly took her in and of course they had to do blood cultures (she still has her port in) and a urine culture. She also received some IV antibiotics. After a couple of days she was better. Then earlier this week, Jack ran fever. This is really sick thinking, but we were pleased that he had something too because then we knew it was something viral that Ella had and not some "unexplained fever" ie. relapse.
In other news, my mother has finished up her chemotherapy and next month will begin radiation therapy. Her hair is starting to grow back and she looks great.
We'll update again soon. Thanks to everyone for keeping in touch and signing the guestbook!
Tina
Monday, April 5, 2004 10:36 PM CDT Hi Everyone.....
Just a quick update! Ella is now an older sister. Her new brother Hank Thomas was born 4/5/04. Mom and baby are doing great. Ella and Jack were so excited to meet the new addition to the family. The delivery went smooth and we were able to harvest the cord blood from little Hank successfully.
Ella is continuing to grow like crazy and is getting into as much trouble as an almost 2 year old can find. We will meet with Ella's doctor later this week to discuss how to monitor or possibly biopsy the remaining spot on her kidney.
Thanks again for everyone’s prayers and support.
Thursday, April 1, 2004 9:13 PM CST It's been a while....Ella had her scans and nothing has changed. The radiologist who read the scan believes that the spot on her kidney is scar tissue. For the time being, we will believe him and hope he's right and not do a biopsy! Now we have to get with her oncologist and see how often we scan her and if he still recommends a biopsy.
Ella is doing so wonderful! She's gaining weight and sleeping better. She keeps herself busy playing with her dolls and with Jack's cars. And she's turning into a real chatterbox! You can hear her throughout the house talking to herself or her dolls. Last week, Jack and Ella were physically fighting. She would hit him or kick him. They never hurt each other but thank goodness they are over that!
And I'm still pregnant! The countdown is on.
A sad note to report...Savannah, another child with Wilm's lost her battle on Saturday. She had a long and difficult battle with this horrible disease. Please keep her family in your thoughts and prayers as they go through this difficult time.
Tuesday, March 23, 2004 9:23 PM CST Well, I thought we had decided to do Ella's biopsy surgery. Then last Monday night, Kelly and I started talking about it again and rehashing it....So to make a long story short, we are having Ella scanned again tomorrow morning. It's been 2 months since her last scan and I think she needs to be scanned before surgery anyway.
I also have a doctor's appointment in the morning. I'm 38 weeks now and the baby could really come any day now. (Although I'm usually a week late!) Since the date is so close now I think if we do Ella's surgery we would do it after the baby comes. We've signed up with a private Cord Blood bank to save the umbilical cord blood of the baby. It's expensive but we feel like it can give us some extra assurance if Ella were to relapse and need a stem cell transplant.
Please say some prayers for some other kids battling Wilms or trying to stay in remission. There's Savannah, Josh, Autumn, Kaitlyn....If you want to read their stories, go to
www.acor.org/ped-onc/hp/wilmspages.html. We've added Ella's page here too!
Will update soon with the CT scan results. Thanks to everyone for your support and prayers. And thank you for signing Ella's guestbook!
Tina
Wednesday, March 10, 2004 9:43 PM CST Not much going on here. Ella is continuing her speedy recovery. She will sometimes still say "ouch" when you pick her up but I'm beginning to wonder if she's pulling my leg, based on her activity level! She certainly hasn't slowed down at all.
We saw the surgeon last week and we are looking at scheduling her kidney biopsy next week or the week after. I saw my OB today and nothing is happening there so we may be safe doing the surgery before I head into labor. Kelly's concern is that Ella will be in PICU at one hospital and we'll be in another hospital having a baby!
It would be so nice to know what's going on inside of Ella before the baby comes and have a plan to deal with it if there is still malignancy. Otherwise, we can celebrate and move on. (Well, we can "move on" as much as we emotionally can--if you have a kid with cancer, then you know what I mean.)
That's all for now. I'll post again as soon as we decide when to have her surgery.
Saturday, February 28, 2004 8:58 PM CST We are home now! Ella is doing very well. We are just giving her tylenol with codeine for the pain. She had a chest x-ray this morning and they said her lungs looked "beautiful!" We came home this afternoon and she has had a good time playing with her toys, especially her little kitchen. Jack is very excited to have her home. (It's amazing what a difference a year makes, developmentally in a child. Last year when Ella and I came home from the hospital, Jack was angry with me for a few days. I was fully expecting the same thing but so far, so good.)
We will go see the surgeon next week. We are thinking that we will do the biopsy on her kidney in 3 weeks. To add another wrinkle to this story, my due date is fast approaching. I'm 35 weeks now. I was late with both Jack and Ella so maybe....?
Thank you for all the support we've had during this surgery! From signing Ella's guestbook, taking care of Jack, or hanging out at the hospital...thank you, thank you, thank you.
Thursday, February 26, 2004 2:26 PM CST Another quick update on Ella's surgery......
We have wonderful news from the pathologist. The nodules are benign! Ella had her chest tubes removed today and is in the process of being moved to a regular room to continue her recovery. We hope to have her back at home on Saturday.
Ella is one strong little girl!
Thanks for all of your well wishes.
Kelly & Tina
Wednesday, February 25, 2004 9:55 PM CST Hi Everyone,
A quick update from Ella's surgery today. Ella had surgery today to remove two small nodules from lungs. The surgery was long but it went well. Both nodules were completely removed and have been sent to the pathologist for review. We should receive information about the nodules in 48 hours.
Ella has two chest tubes and an epidural so she will be in the Pediatric Intensive Care Unit tonight with Tina. Ella is resting comfortably and was watching Blue's Clues when I left. We expect Ella to be in the hospital for the next couple of days.
Once again our family and friends were with us the entire day, Tina and I am so grateful to have a close family to have nearby for support.
Thanks to everyone for your prayers for Ella.
Monday, February 23, 2004 9:58 PM CST Thanks to everyone who has signed our guestbook. Kelly and I feel like we have an extended family through all of the Wilms' kids and their families!
The trip to Houston was a success. We met with the doctor after waiting 4 hours but it was a good meeting and worth it. He definitely recommends that we biopsy the remaining kidney lesion and also the lung lesions. After speaking with our doctors here, we have decided to only do the lung lesions at this time. If they are still active tumors, then we know we have more work to do and we won't risk damaging her only kidney. If they are not active, we may be back to Square 1 and biopsy the kidney after all.
She is scheduled for surgery on Wednesday. Since it will be a CT guided biopsy of the lungs, she will be seen by the radiologist first so he can mark the lesions and then she will go straight into surgery. She will be under anesthesia the entire time. They have said Ella will probably be there 2 days with a possible stay in PICU. She's doing so well that I hate to put her through another surgery. But, whatever it takes!
Jack will be in preschool during the surgery then over to a friend's house. (Thanks for all of your help, Shannon!) He worries about Ella but we've tried our best to talk to him about it and ease his fears.
Thanks to everyone for your prayers, help, and support! We love you!
Saturday, February 7, 2004 11:04 PM CST Since the last update, Jack has learned to ride his bike without training wheels. His cousin Grace and her friend Julianne taught him one afternoon after school and he caught on very well. Now he's jumping off the curb and trying to do wheelies! He's very proud of himself!
Ella has recovered from her cold. We had to go in to the doctor's office a couple of times and get IV antibiotics and she did 10 days of an oral antibiotic. She hated the oral antibiotics. It was Ceftin and it tastes gritty and horrible. I tried mixing it with Hershey's syrup or yogurt but she would still spit it out. The only way was to let her play in the sink to distract her and then let her play with the medicine syringe. Whatever works! Thank goodness she's all better now!
We have been working with the doctors to get a referral to Texas Children's Hospital in Houston to see an oncologist about the remaining tumor in her kidney. We will meet with him on Thursday. We don't expect him to tell us anything dramatically different than what we all ready know but I guess we are looking for some reassurance about doing a biopsy.
It's hard to believe that it was last year this weekend that she was diagnosed. She was so sick. I will never forget the feelings of helplessness, despair, and confusion during what I call the "dark days," really months, following her diagnosis. She has come so far! And through all of it she has been an amazing trooper and has given me strength that I didn't even know I had. There have been so many good things that have come of this journey. No matter what happens with the rest of the journey, I believe that more good things will follow.
I've been following other kid's with Wilm's through their websites. It's funny how this childhood cancer is supposed to be relatively rare (500 a year in the US) and yet it seems like there are quite a few out there! Please say a prayer for those kids who are fighting so hard. If you can, give blood or platelets, and/or sign up to be a bone marrow donor! You never know who you are helping.
That's all for now,
Tina
Tuesday, January 27, 2004 9:46 PM CST Hi Everyone,
Ella had her CT scan yesterday. She did awesome! She just laid on the table sucking her thumb and holding her "blankie" while Kelly talked to her. She didn't cry at all this time. The hardest part was keeping her away from food for 4 hours, from the time she woke up to the time of the CT.
We weren't expecting to get any results so quick but there has been no change in the tumor. We were praying for it to disappear but I guess no growth in 6 weeks is almost as good! We will meet with the surgeons next week to talk about a biopsy. I asked Ella's doctor if it was normal to have remaining tumor after completing a protocol. He said it was "unusual" for it to happen and that sometimes he wakes up in the middle of the night thinking about it. Well, that makes 3 of us losing sleep over this!
Ella woke up late last night with a fever, runny nose, and cough. Hopefully her cold doesn't develop into anything major or spread to the rest of the family!
Tina
Thursday, January 22, 2004 8:55 PM CST Hi Everyone!
We hope you are all finding health and happiness in 2004!
Jack, Ella, and I have just been "hanging out". They are really cute when they play together. Ella has been feeling so well lately that she is getting into plenty of trouble. On Tuesday she broke a glass plate, and then threw a $20 library book into the bathtub with Jack. I guess I have a new cookbook courtesy of Ella and the Austin Public Library! She also enjoys playing (and sometimes even drinking) toilet water! That's something I won't tell her doctors!
As far as Ella's treatments, there really hasn't been much happening. We have been waiting on the doctors to get back to us about our options with the remaining tumor on Ella's kidney.
During the last 3 weeks: Ella's oncologist consulted with the head of the NWTSG (National Wilms Tumor Study Group) and he recommends that we go ahead and do surgery and get a biopsy so that we know exactly what the remaining tissue is (scar tissue or active tumor). He recommends taking an aggressive approach because Wilms can be a very aggressive growing cancer. However, when the surgeons saw the scans they were not thrilled about the prospect of doing surgery to get a biopsy since the tumor is on the working part of her kidney. (Big, big deal when you only have one kidney!) Yesterday we finally heard back from a radiologist at Children's and he said he would be comfortable assisting with a CT guided surgery to get some cells from the tumor.
Since it's been 6 weeks from Ella's last chemo treatment, we are going to do another CT scan on Monday. We are praying for a miracle that the "tissue" is gone and she won't have to endure any more surgery.
In other news, my mother has finished her 4 chemo treatments for breast cancer. She did really well! Other than hair loss she didn't suffer many side effects at all. Her oncologist wants her to do 4 treatments of Taxol before she starts her radiation. This will just give assurance that nothing will come back. Please keep her in your prayers also.
That's all for now!
Tina
Tuesday, December 30, 2003 9:28 PM CST Hi Everyone ----- Merry Christmas ---- Happy New Year!!!
Sorry for the delay in the update on Ella's site. Tina and I have been extremely busy over the past couple of weeks. We hope everyone has had a happy and healthy holiday season. Our main goal was to keep everyone healthy for Christmas and stay out of the hospital. I am happy to say that we achieved that goal, we had a great Christmas. Jack and Ella were so excited that Santa Claus made his visit. Ella figured out the unwrapping of gifts and that there is fun toys inside most of those wrapped presents. Ella's favorite toy is her new kitchen; she enjoys serving anyone interested tea. Jack is having fun with his new remote control Jeep and the many toys that dad spent 2 entire days assembling.
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Ella update from her latest CT scan. Ella had another scan yesterday. We had a good scan, although our ultimate goal is to see no signs of the tumor on her kidney or lung with the CT scan. This scan showed continued diminishment of the tumors both in size and density. We now have a decision to make about whether to have surgery to biopsy the remaining tissue of the tumors to see if the cancer cells are still active. Our other option would be to have scans on a very regular basis to monitor the tumors for any activity. We also might continue the chemo protocol that Ella was on for a few more doses since we have seen success with this medicine.
We'll update everyone with our decision on the next steps for Ella. Thanks to everyone for your continued thoughts and prayers! We wish everyone a happy and healthy 2004!!
Love,
Kelly, Tina, Jack, and Ella
Wednesday, December 10, 2003 8:32 PM CST Ella got her last dose of chemo today! This is a major milestone in that she finished her protocol. We go in again on Monday to check her counts and Tuesday she will have an EKG. She'll be put on a treadmill and she'll have to run to see how her heart handles the stress. Then she'll ride a tricycle, like Lance Armstrong. No, not really! It's just a quick scan of her heart to see if any damage has occurred due to the chemo medicines. It's similar to a sonogram but I can hold her in my arms. Then we may need to go in later in the week to get blood, depending on her counts. We will do her final scans in a few weeks. The doctors want the chemo to have time to do its job.
Although her chemo is done, as you can see, we really aren't "done". Kelly and I have looked forward to this day for so long. We thought we would feel ecstatic and we'd want to go celebrate. Instead, we just have a weird feeling of nothingness. It's very strange.
I haven't written about this yet but on Friday I go into the doctor's office for a sonogram. I'm 5 months pregnant! My doctor does a lot of sonograms but this one is THE sonogram. The technician will measure everything and make sure everything is right. (You can be sure I will make her take a triple look at the kidneys!) We already know it's a boy through amniocentisis--I had to have one due to my "advanced maternal age". Kelly and I just want a "healthy baby". After spending so much time at the Children's Hospital and seeing what can happen, that phrase has such a different meaning to us now.
I'll write again in a few days. I hope everyone reading stays healthy and well.
Monday, December 8, 2003 7:48 PM CST We really enjoyed last week. Ella was feeling good and she actually slept through the night. I took the kids to the park on Tuesday. Then on Thursday we went down to Central Market and walked around the duck pond. All of the ducks came out of the water to be fed. The ducks chased Jack for our cheerios. He was somewhat wary of the ducks but Ella had no fear at all. She wanted to chase them! I'll have to post her picture. The picture reminds me of the old lady feeding the pigeons in "Mary Poppins"!
Ella started her LAST chemo today! It is a 3 day treatment. Today she got doxyrubicin, vincristine, and cytoxin. Tomorrow and Wednesday she'll only get the cytoxin. She'll be hooked up to fluids the entire time. The fluids are a pain because we have to follow her around with the bag at home but I really think it makes a difference in how she feels. Her Aunt Pam took her to her Doctor's appointment today. Thank you, Aunt Pam! I'm sure Ella was tired of my boring entertainment. With her Aunt Pam, she went on a wagon ride throughout the hospital sightseeing and looking at all of the Christmas decorations.
I can't believe Christmas will be here soon and so will 2004! We are trying to get our Christmas decorations up. We have our tree, but not fully decorated yet, and our lights are on outside. (We have no ornament hangers! They disappear every year!) Jack loves to help with all of the decorating.
My mother started her second round of chemo today and she has already lost a lot of hair. It surprised me how fast it went. Other than her hair loss, she seems to be doing well.
I hope all the side effects from treatment are over for my mom and Ella so that they can enjoy the holidays. (And I'm going to try really hard not to think about getting Ella's scans and subsequent test results!)
Wednesday, December 3, 2003 9:28 PM CST I took Ella in on Monday and her white blood was up from one neupogen shot so we didn't have to give her any more. We did have to continue her 2 IV antibiotics through today. Since they have to be done in the middle of the night, she would come to our bed so we could hook her up, flush her, disconnect her line, etc. I guess you could say Kelly, Ella, and I have been up late doing drugs :-). I think Jack is the only one getting any sleep around here!
We thought that she would need blood today but her hemoglobin has climbed a bit and her platelets have jumped up. So other than being tired from her late night escapades, she's doing fine.
At the doctor's office today, they had an off-treatment party for a little girl. She has undergone treatment for 2 1/2 years. I didn't ask but she probably had leukemia. (I cannot imagine doing this for that long! Of course, I see kids up at the hospital for diseases and illnesses that there will never be an ending. They will always have some treatment or therapy for the rest of their lives. At least Ella has a chance for remission and a cure.) Okay, back to the little girl....her mother said that the little girl, I think she was about 8 years old, had saved up all of her empty prescription pill bottles over the past 2 1/2 years. Last weekend, they put them in a bag and ran them over with the car in the driveway!
Sunday, November 30, 2003 10:10 PM CST (I received some responses that you are still reading this "stuff." I'm glad people are reading it. It makes me feel like we aren't alone in this. And, because I'm operating on auto-pilot I'd like to read it later when this is all over and share it with Ella when she gets older. So here's some more!)
Ella and I spent several hours at the hospital today. She ran fever in the middle of the night and was fever free until about 8 pm tonight (100.4).
We did her 2 antibiotics last night from 4-5:30 am. We bring her down from her crib and let her sleep in our bed during that time. She's getting a little too comfortable in our bed with us!
We had to go into the hospital today because her doctor wanted to see her again. With this one antibiotic (vancomyacin) they draw blood before and after to check blood levels of the medicine. It's called a "peak and trough". If the levels are too high or too low, they can adjust the dosages. Ella's ears are clear, her urine is fine, and the blood cultures from her port have come back negative so far. All of this is good news but then we don't know what is causing the fever.
We won't start chemo tomorrow because her WBC is too low (.8) and her platelets have dropped to 84. Her platelets had already dropped from this last round of chemo and started coming back up when they dropped again. Weird. If her platelets get down to 20 then she'll get a transfusion. We started the neupogen shots again to bring up her WBC. Kelly gave her the shot tonight while I held her. I think he did a better job than I usually do!
I'll take her in again tomorrow. We spend more time up at Children's Hospital. Believe me, I may sound like I'm griping about it, but I'm so thankful for all of the doctors, nurses, Child Life volunteers and other staff. (I see them more than I see my friends and family!) They are wonderful with Jack and Ella and have really made this "adventure" bearable. And above all else, if it means we go up there everyday, then we'll do it until Ella gets better!
Saturday, November 29, 2003 8:44 PM CST We hope everyone had a happy thanksgiving! We didn't get to spend it all together for various reasons but it was happy nonetheless.
Ella has been running fever for the past few days. Originally the doctor thought it was some sinus infection and he put her on amoxicillin. But the fever continues. I took her up to the hospital yesterday for blood work and IV antibiotics. Then today we returned and she received some IV antibiotics and they took blood and urine. Then we were sent home on Home health care. Kelly and I are giving her 2 types of antibiotics by IV every 8 hours. They run over an hour. Basically, this means no one will be getting any sleep over the next few days. BUT we have to find out why she has this fever and take care of it! Last night it was between 103.5 and 104.1. If you have an ear thermometer you know what I mean with the range of temperatures!
The doctor will probably delay her (LAST!) chemo on Monday until we find out what is going on with this fever. Hopefully it's not another kidney infection or infection in her port. If it's an infection in her port, I hope the antibiotics will take care of it unlike the last time when she had to have her port removed and a new one put in.
On the good side, her HAIR is growing back in! It's very blonde and not very noticeable but if you look really, really, really close you can see some fuzz! Okay, you may need a magnifying glass to see it but it's there. She'll be back in bows in no time!
Monday, November 24, 2003 8:42 PM CST Ella's counts were good today! No more neupogen shots! Yay! She hates getting them as much as I hate giving them to her.
Ella was really cute today with another patient. Alexandria was leaving the office and she and Ella hugged and then blew kisses to each other.
I took Jack in for the second half of his flu shot today and he did great. Jack and I will take Ella in on Wednesday to get her booster flu shot.
Last night I was going through some paperwork when I found Ella's counts from her diagnosis. Wild! All of her blood counts were out of whack. It makes me realize just how sick she was and how far she's come.
That's really all for now. We hope everyone has a wonderful Thanksgiving. We certainly have lots to be thankful for!
Saturday, November 22, 2003 9:38 PM CST Hi Everyone,
(Does anyone still read this stuff?)
I took Ella in to get her counts checked on Thursday. They are very low. Her White blood count is 400. I think normal is 4000-14000. And her ANC (ability to fight off infection) is 48. They want that number to be over 1000. She is pretty much house bound until her counts get back up. She's been running a fever and has a runny nose. So we're giving her neupogen shots again at home to try to get her WBC back up. She's been sleeping a lot but when she's awake she plays and is very active.
Jack went with us and I think he actually enjoyed the visit. It wasn't crowded at all and it was, thankfully, a relatively short visit. He played with the Child Life specialists and made a very cute Turkey necklace that he has been wearing ever since. And he comforted Ella when she cried after her neupogen shot.
Jack will get his booster flu shot on Monday at his pediatrician's office. If Ella's counts are back up she'll get hers too. Kelly and I have already had our flu shots. Hopefully it will keep us flu-free this season. I have to say I've become a germ freak. No, I'm not wearing a mask in public but I'm very conscious of what I touch and I wash my hands frequently.
Anyway, that's about it for now. Ella's next appointment is Monday for a count check. If her counts are back up then we'll do her last round of chemo on December 1.
Tina
Tuesday, November 18, 2003 8:33 PM CST We made it through last week! Ella did wonderful. The only hitch we had was Friday night. Ella is so active that she worries me that she will pull her IV needle out of her port. And she did on Friday night, right before bedtime. She was playing around on the couch (flopping around, really) and she pulled on her line and pulled her needle out. Kelly, my wonderful husband, took Ella and Jack down to Children's to get her port re-accessed. I'm surprised she doesn't pull it out more often.
Ella has certainly bonded with her nurse, Jennifer. There were times at the office that she preferred Jennifer to me. On Friday, I was able to leave Ella with Jennifer and run down to the cafeteria to get us lunch.
Yesterday we went in for a count check and she needed blood. We go in again on Thursday to check counts and then we will probably start her neupogen shots for her white blood cells.
My mother started her chemo yesterday morning and she's getting the same drugs that Ella gets. I'm happy to report she's feeling fine.
Monday, November 10, 2003 8:25 PM CST We started our last 5-day chemo treatment! Today went well. Other than getting extremely tired toward the end, Ella did great. She was easy to entertain and she didn't run around too much. She likes to go behind the front desk and play with the "girls" who work there. They love her! They all stop working to play with her. I don't think much gets done the week we are there.
It was busy there today with patients. Several people came up to us and told me that they had heard that we were almost done with our protocol. Believe me when I say Kelly and I couldn't be happier to think that this chapter in our lives is almost over. At the same time, we don't know what the future holds for Ella. Will it really be over? What kinds of late effects will she have? I guess that's where trust comes in.
And what about all the other kids? Here we are, almost (hopefully!) done and then there was a little girl up there today who was recently diagnosed. And some of the kids with leukemia have a 3 year protocol! (I couldn't imagine!) All the kids are in different stages of their "cancer journeys."
And we are about to finish, and my mother is about to start on her own cancer journey. She gets her port put in on Friday and she'll start chemo next week.
Sorry this entry is so disjointed. I just had to get some thoughts out somewhere!
Tuesday, November 4, 2003 7:36 PM CST Ella had her counts checked yesterday. She's doing great. She had her flu shot booster and we were outta there! It was a nice, short visit!
We'll start our second to last week of chemo on Monday. That's really all to report for now.
Monday, October 27, 2003 8:15 PM CST Ella and I went in today for an appointment to check her counts. Her red blood was low so she had to get blood. It takes about an hour to get it from the lab and then 2 1/2 hours to infuse it. We were there about 5 hours. It was tiring. And I'll be giving her the neupogen shots again this week. Her immunity is down so she can't have any raw oysters, sushi, ceviche, or raw eggs! :-) We need to go in again to get her counts checked on Friday.
My mom received good news today. Her cancer has not spread to the lymph nodes. Thank goodness! She'll meet with her oncologist on Wednesday to determine her treatment plan.
Tuesday, October 21, 2003 8:17 PM CDT Ella started another round of chemo this week. It's only 3 days in the office and then she's on fluids at home. Kelly has been taking her in because I have a cold. During this week they give her a small dose of a steroid to help with nausea. It must work because she doesn't get sick but she's usually really hungry! Sometimes I have a slight panic attack because I can't find enough food that she "will" and "can" eat! Oh well, I guess that's a good problem to have.
Kelly talked more to the doctor about Ella's tests. The tumor on her kidney has shrunk and is more "ill-defined" than the last test. And she has 2 nodules on her lungs that are shrinking. She started with 4. The doctor mentioned to Kelly that, if at the end of Ella's treatment, there are still nodules on the scans, we have two options: we can follow her closely or biopsy whatever is left. I don't know what to think about that but I'm glad we don't have to decide today!
Friday, October 17, 2003 8:47 PM CDT We had Ella's chest x-ray, CT scan, and ultrasound today. She was not always cooperative. She can't eat or drink for several hours before the scans and she was awake most of the night so she was not very cooperative! Although we only have very early results we think it is good! We are somewhat in disbelief and we don't want to get too excited until we find out more on Monday. The ultrasound and CT technicians told us they didn't see anything. They probably aren't supposed to say anything but we are grateful for any niblet. We always have the same technicians so they know and remember Ella from past scans. It is a big relief to know that her treatment is working.
I've been crying all day out of relief for Ella and then because a teenager from the doctor's office lost his battle with cancer on Wednesday. I saw his obituary today in the paper. I didn't even know him, other than seeing him and his mother at the doctor's office all the time. I just feel for him and his family.
I hope everyone enjoys their weekend! I will update when we learn more!
Tina
Tuesday, October 14, 2003 9:01 PM CDT We had Ella's counts checked yesterday and she's doing great! Her white blood count is up (way up!) thanks to the neupogen shots. Her hemoglobin was 11.4 and holding. I was surprised because she was sleeping an awful lot, sometimes up to 17-18 hours a day. The nurse said that the effects could be cumulative and she could just be tired a lot. We will go in again on Thursday to get her port accessed for her Friday morning tests.
Jack, however, ran fever and vomited this afternoon. Ella has not learned tact yet--she was laughing while he was sick. Thankfully Kelly was on his way home but I still called him to tell him to hurry and get home because I had a mess to clean. Of course, when he gets home Jack is fine and up and around playing again. Ugh!
My mom received her pathology results yesterday. She will need to undergo 6 weeks of radiation and chemotherapy for Stage 2 breast cancer. She will have another surgery on Monday to remove lymph nodes. And she will be getting a port like Ella. I guess Ella can show her the ropes of treatment.
Thank you to everyone for your thoughts, prayers, and support. It's nice to feel like we aren't going through all of this alone.
Wednesday, October 8, 2003 12:39 AM CDT We have enjoyed the last few days. I took the kids to Mayfield Nature Park for a picnic. There are lots of peacocks running around and there are goldfish ponds. Ella and Jack liked it except Jack was worried about Snakes. The fear of snakes must be some gene from Kelly!
We checked Ella's counts today and she only needs Neupogen. I'll give her the shots at home for 5 days. Her hemoglobin is holding steady at 11. If it falls below 10 she'll get another transfusion. We'll go in again on Monday to check counts and then next Thursday we have her scan. There was a teenager in the office today with pretty, long, red hair. I don't know what she was there for but I'm assuming to get her annual check after cancer treatment. They were talking about her going to college next year. That will be Ella in 16 years!
My mother, "Omi", had her surgery yesterday and is at home recovering. She won't have the pathology report until Monday then the docs will determine her treatment plan. We are hoping and praying she will only have to do radiation.
Saturday, October 4, 2003 9:22 PM CDT Ella finished another week of chemo. At the end of the five days, we are exhausted. The only bump in the road was her needle came out of her port today while she was still getting fluids. So we had to go back to the hospital and have her re-accessed so she could get heparin so she doesn't clot. It was a pain but relatively painless. Jack and Ella walked around eating popsicles while we waited for the nurse. It was very cute.
We have to go in again on Wednesday so we can check her counts. Hopefully because she received blood on Thursday she won't need blood again. Her doctor lowered her dosages because he was worried about "mylosuppression", (spelling?) in other words, her white blood count and infections. I'll be surprised if she doesn't need neupogen shots again to get her WBC back up.
We will have a scan done on Thursday, October 16. We are praying for the best. Ella is doing so well. She is so active and personable. I only wish that was how we can gauge her progress. I'm almost afraid to think or write this down: If all goes well, Ella will have only 1 more 5 day treatment and 2 more 3 day treatments. That's only 11 days left!!! I can't believe it!
Thursday, October 2, 2003 9:10 PM CDT Sorry I haven't updated in a while. Ella's had a busy week. We are on Day 4 of a 5 day treatment. I was sick on Monday so Kelly took her in to the doctor's office to start her treatment. They were there for 6 hours. And of course she napped in his lap! She would never do that for me!
In addition to the in-office chemo, she is on IV fluids and an IV kidney protector at home during this time. Luckily we don't have to push an IV pole. Instead it's in a bag we can carry on our shoulder. Because the bag is too heavy for Ella to carry we follow her around like the Secret Service. It beats being admitted into the hospital every 3 weeks for treatment.
Today Ella had to get blood so we were there about 6 hours. My friend Lara came to the dr.'s office and helped push Ella's pole.
It seems like right now our family is surrounded with medical issues. Ella's Aunt Pam had surgery on Monday at the Georgetown Hospital. She's at home now and we wish her a speedy recovery. And my mother, Ella's "Omi", received bad news last week: she was diagnosed with breast cancer. She will be undergoing surgery on Tuesday followed by 6 weeks of radiation. Please keep them in your thoughts and prayers!
You all mean a lot to us. Thanks for your help, support, thoughts, and prayers. We couldn't imagine doing this all alone!
Tuesday, September 23, 2003 8:09 PM CDT Today, Jack, Ella, and I met Kelly for lunch at Shady Grove restaurant. The weather was nice so we ate outside under the trees--great for allergies! If you've never been there, you need to go. The food is great and it's a very Austin-y place. The bathrooms are a renovated Airstream camper. Jack had to go "potty" 3 times because he had to check them out just one more time! Afterwards, Kelly went back to work and the three of us went to the Arboretum and played around the cow statues and ate Amy's ice cream. With Ella being sick these are the times that mean a lot to me. Just being able to do some normal things with my kids.
Tonight Ella is running a little fever. She's at 99.5. If it goes above 100.5 I have to take her in. We'll wait and see.
Monday, September 22, 2003 8:04 PM CDT Ella and I went in on Monday and her counts look great! She doesn't need the neupogen shots anymore. Thank goodness! I was tired of poking her in the leg every day! She got a quick push in her port of Vincristine. It's a larger dose than what she's been getting. It can cause tingles and numbness in her fingers and legs and jaw pain. Sometimes after getting it she is wobbly on her legs. The good news is that we don't have to go in again until next Monday. That's when we'll start another long week of chemo. But at least we have a break.
Wednesday, September 17, 2003 8:56 PM CDT Ella's been doing wonderful since her latest round of chemo. No hiccups or bumps in the road. She's truly remarkable.
She is getting Neupogen to increase her white blood count (WBC). Before her port infection we would do a 20 minute IV pump at home. It was easy. But now the doctors are reluctant to access her port unnecessarily so we are doing the Neupogen via shots. And I can either go into the office or do them at home. Well, since we all ready spend ENOUGH time up there I've opted to do them at home. However, we're still waiting to receive the Neupogen from the mail order pharmacy so in the meantime we are going into the office for the shots.
I have to learn how to give shots. I wanted to practice on Kelly but he wanted none of that. I tried to give her the shot yesterday, with her nurse assisting, and just couldn't do it! I poked her with the needle but couldn't follow through. Today, I was able to do it. Ella started crying while she was on the nurse's lap because she knew what was coming. Jack was watching and afterwards he went to the reception area and came back with a lollipop to make her feel better! It was very cute!
We're going back in tomorrow to check her counts.
Hope everyone is doing well. Your entries mean a lot to us. Thank you so much!
Friday, September 12, 2003 8:29 PM CDT Ella had 2 days of chemo this week. When the nurse accessed her new port for the first time yesterday Ella cried. It hurt because she was still bruised from the surgery. Her doctor decided to drop the third day of Cytoxin to keep her white blood counts up. It's such a balancing act--kill the cancer but don't do too much damage to the child. I'm so glad I don't make those decisions on a daily basis. My concern is a relapse. I've met several parents in the past few weeks with kids that have relapsed. Once is a nightmare enough I can't imagine what they are going through.
We're home now and Ella is on fluids until tomorrow afternoon. The extra fluids are to keep her kidney flushed because the cytoxin can cause damage to her kidney. So far all of the tests for damage have come back normal.
In the doctor's office today, Brock Edwards and Chance Mock of the UT football team came by to meet the kids. They signed autographs and talked with the kids. The kids were really excited about meeting the players. When they were leaving I told them "Good Luck in the game tomorrow, guys!" Brock Edwards said, "Thanks, Ma'am." Ma'am???? I guess I seem old to them!
Tuesday, September 9, 2003 9:35 PM CDT The doctors put Ella's port back in. It's on her right upper chest now. It was on the left. She can still suck her right thumb which is THE most important thing! She did really well during surgery and recovery. Her throat is quite sore from the tube they put down her throat. We will start a 3-day round of chemo on Thursday.
Wednesday, September 3, 2003 9:47 PM CDT Kelly took Ella in to the green unit on Monday. Dr. Sharp was on call over the holiday weekend and we decided to have Ella get her small dose of chemo at the hospital. Otherwise we would have had to go in on Tuesday and the office would have been very busy. Her counts checked out good and so they also took out Ella's picc line.
We feel very "normal" right now, if you can imagine. The past few weeks we've been giving Ella an hour long antibiotic through her port in the middle of the night. Kelly and I would sneak in to her room and I would have everything ready (syringes, alcohol wipes, etc.) and Kelly would hold the flashlight. As soon as we walk in, Ella would wake up--she can be such a light sleeper. So we would bring her down to our bed and she would talk to us, eat cheerios, and drink a bottle. She was always in a good mood! We aren't doing that medicine anymore and it feels so good to get a good night's rest! We're seeing the doctor on Friday to talk about putting her port back in on 9/8.
Jack started soccer yesterday. His first game is Saturday. Jack has two buddies on his team, Riley and Joshua. This age group is really fun to watch play. Kelly is coaching Jack's team again. So we should be very busy over the next two months.
Sunday, August 31, 2003 8:43 PM CDT Well, Kelly and I were able to attend Jennifer's wedding. Only because Omi and Aunt Pam helped us out. During Ella's nap, her PICC line bled and then clotted. So, Omi and Aunt Pam took her into the Green unit and they were able to unclot it with some medication. Thank goodness or she would have had to get another PICC line. They wheeled her around the unit in a wagon for an hour until the medicine worked. We're thankful that someone else was able to take care of her. That's good for everyone!
We had a good time at the wedding. It was weird for Kelly and I to be by ourselves. That hasn't happened for a while. Jack went over to cousin Greg and Domie's house and played and swam with Maddison. He had so much fun.
Saturday, August 30, 2003 10:39 AM CDT Thursday morning the surgeon removed Ella's port-a-cath and put in a piccline. It took about 30 minutes for surgery and an hour for the piccline to be inserted. The picc is a central line in her arm and she can get all of her medications through it. After anesthesia wore off she was fine! You would never know she had surgery that morning. She was walking and playing. She's such a trooper.
Today, Jack, Ella, Aunt Pam and I are going to go to the hospital to the Oncology unit (a.k.a. "the green unit") for a blood draw. The doctor wants to check her counts and make sure she doesn't need blood or platelets. She was pretty low on Thursday. If she needs blood over the weekend then we will get it on the green unit. That's one thing that has surprised me about Ella's cancer. It's not a Monday-Friday illness. It's 7 days a week, 24 hours a day.
Tonight Kelly and I are going to Ella's nurse's wedding. Jennifer is a great nurse with a fun personality and she loves Ella. Ella and I see Jennifer more often than we our friends!
Wednesday, August 27, 2003 9:25 PM CDT Ella and I spent last night in the hospital. We all went out for a walk and we checked Ella's temp when we came back and she was running fever. Dr. Shaeffer wanted us to come in because of the problems we're having with her portacath. Over the past 2 weeks she's had some blood cultures come back positive for bacterial growth even after antibiotics.
We are home tonight but tomorrow morning we are going in for surgery to have the portacath removed. She'll have a pickline (?) inserted in her arm and then in a week or so she'll get a new port. Considering everything she's gone through, she's doing well.
My friend Shannon has been watching Jack for us while all of this has been happening. Jack loves to play with her 3 kids! Thank God for all of our family and friends that help us along the way.
Sunday, August 24, 2003 12:31 AM CDT Well, I'm so glad last week is over! We were in the doctor's office every day for 4-6 hours getting chemo. Ella is attached to an IV pole the entire time. And since she is now walking, she rarely stays in one place so I chase her around the office.
On Friday, the Child Life department in the doctor's office hosted an Off-Treatment pizza party for our friend Josh. (We've made a lot of new friends up there!) He's the sweetest and friendliest 10 year old you'll ever meet. He is going off treatment and now will only go into the office for lab work once every month. I can't wait for those days!
Tuesday, August 19, 2003 6:29 PM CDT To update everyone, back in late May, Ella had some tests done and it was discovered that she had some new growth on her lungs. The doctors decided that we needed to intensify her treatment and so she underwent radiation mid June and a new chemotherapy protocol. Getting radiation was easy. We went in every morning at 6am for 8 days and she got a little "cocktail" and fell asleep while she received radiation. Then about 10 days later she was horribly sick. Throwing up, losing weight. It was awful to see her go through this. But once again, she bounced back.
Her new protocol is 5 days chemo then we are off for 2 weeks while her body recovers, then 3 days chemo, 2 weeks off and then it starts all over again with the 5 days.
We are currently in the middle of a long week of getting chemo. Ella and I go in every day this week and she gets cytoxan and VP16 via IV drip and each take an hour to administer. In addition she's currently getting an IV antibiotic because she has some bacteria lingering in her portacath. That takes ANOTHER hour to administer. By the time we leave the office we are exhausted! She comes home on a fluid pac that is really nice because otherwise we'd have to do all of her treatment inpatient. I'm happy we have the option or we'd be back in the hospital every 3 weeks. Hospital stays stink!
We had some GOOD NEWS on Friday, August 15. Ella had some new tests done and they show that the new therapy is working. The largest tumor on her lung is gone and the tumor on her remaining kidney has shrunk somewhat and has become more hollow. I can't describe how nice it is to know that we've made some progress.
Saturday, August 9, 2003 9:49 PM CDT This is the original email that was sent to our family and friends on February 24, 2003 when Ella was first diagnosed.
Dear family and friends,
Most of you know we have had a health challenge recently with our beautiful 9 month old daughter Ella. Two weeks ago we took Ella in to the doctor for what we thought was an ear infection.....after several tests and two days later we found out Ella has a Wilms Tumor on her kidney. The tumor is cancerous and fairly large and is bilateral, meaning that the cancer has spread to her other kidney and lungs. The good news about this form of cancer is the fact that the cure rate is very high and Ella has a form of the cancer that has favorable histology. Currently Ella is under going Chemotherapy once a week to shrink the tumor for removal in 6 - 8 weeks. With the successful removal of the tumor Ella will continue Chemotherapy for another 41/2 months to eradicate the disease.
Obviously this is a very difficult time for Tina, Jack, Myself and our family and friends. We want to thank each and every one of you for your thoughts and prayers. We have been blessed to be surrounded by family and friends that are helping us through this difficult period. We still have a long road to recovery for Ella, so facing this with the support we have from everyone will have a positive effect on us.
Many of you have shown interest in the type of disease Ella has and the treatment she is receiving. I have included some links below for more information about Wilms. Ella is being looked after by one of the best Pediatric Oncologist (Dr. Sharp) and a great surgical staff. The Austin Children's Hospital has been great in supporting our medical and psychological needs. The Junior League of Austin has been excellent resource for supporting Child Life which helps children and their siblings understand illness such as cancer.
Once again we can not thank each and every one of you enough for the support you have given to us during this time. We love all of you and are grateful for your thoughts and prayers.
Kelly & Tina
Wilms Tumor Link: http://www.cancer.org/docroot/CRI/content/CRI_2_4_1x_What_is_wilms_tumor_46.
asp?sitearea=CRI .asp?sitearea=CRI>
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