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April 06'- Sept 08'Updates |
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JUST WANTED TO LET EVERYONE KNOW THAT SEPTEMBER IS CHILDHOOD CANCER
AWARENESS MONTH. I HAVE ATTACHED A POEM I FOUND FROM ANOTHER WEBSITE.
PLEASE KEEP ALL THE CHILDREN FIGHTING THIS DISEASE IN YOUR PRAYERS. ON
A POSITION NOTE, KATIE'S DIAGNOSIS ANNIVERSARY WAS SEPTEMBER 8th. IT
HAS BEEN 3 YEARS SINCE DIAGNOSIS.
WOW has it been a while. It seems like
this summer went way too fast. Katie had tubes put in her ears in July
since she failed her hearing test and kept having ear infections. She
did well with it. The kids have been enjoying the new pool at our
house. They both absolutely love to swim. Everyone is doing well at
our home. Tyler will start school this month at Cedar Hollow. He is
going to be in the 3rd grade. He's very excited to be starting a new
school with new friends. Katie will be attending St. Pauls Lutheran
Preschool 3 days a week. This will hopefully help get her ready for
kindergarten. She is such a ham. I cant believe some of the things she
comes up with. She definitely keeps us all on our toes. We are fast
approaching the 3rd anniversary of Katie's diagnosis. It is on
September 8th. I cannot believe it. We will celebrate this day and
Katie's life. Thanks for checking on us. I wont update as much which
is good since that means everyone is well. Take care. The Camerons
Sorry for the lack of updates. Everything is going okay here. We will be heading to Omaha on June 17th and 18th for some tests. Katie will have a nerve test done on her face to determine the amount of function she has left from the stroke. We will also see an plastic surgeon that specializes in eyes so they can evaluate and see whether Katie needs a weight put in her eye to help it close all the way and prevent more drying out. We just returned from the Curesearch Walk this weekend. Our team raised over $5,000. WOW. The total for the entire walk was over $200,000, which was double then last year. Katie and Tyler had a good time and Katie thought it was a party for just her, so we let her think that. We got to see some of our wonderful nurses and friends we have met along the way. It really puts in perspective what we have been through and how far we have come. We have been dealing with water issues at our home the last couple of weeks, along with everyone else in the City of GI. We just cant catch a break with the rain. I will try to update after her appointments next week. Thanks for checking on us and have a wonderful day.
Well, another appt done and over with. Katie is in excellent health and her tests all came back perfect. We will continue to go to her oncologist every 6 months until she reaches 5 years in remission. Her eye doctor was pleased with her eye and he doesn't want to see her for 6 months. We will be going back on May 6th and 7th to her neurosurgeon to check her shunt and make sure it is working okay. They do this yearly as routine. We are hoping to talk to the doctor about possibly having surgery on her face. They would take a nerve from her leg and place it in her face to help with the function on her left side. They talked about this last year, but wanted to wait another year to see her progress. Everything else is going good. We are still raising money for the Cureseach Walk on June 7th. You can donate online and join our team also. Its a fun event and really special to families affected by childhood cancer. Please consider donating to this great cause for Katie's Crew. We would love to have as many family and friends with us as we can. You can go to the Curesearch website and go under Omaha Walk and donate to Katie's Crew online. Thank you for your help and prays. Have a great day.
We are scheduled for a few of Katie's doctor visits on Monday, April 14th. We will be going to Hem/Onc to check her bloodwork and see her oncologist. We will also see her eye doctor for a follow up after her surgery in January. We could not get into her neurosurgeon until May 6th. Please pray for Katie to have a great checkup. We are in the process of raising money once again for the Curesearch Walk in Omaha on June 7th. If you would like to be part of our team, please visit Cureseach website and sign up. We also need lots of donations. Please, anything you can give would help our cause to fight childhood cancer. We are trying to beat our total from last year of $1,600.00 and we are not only at around $265.00 or so. You can use you debit or credit card and do it right online. It would mean so much for you to take the time to do this for all the little ones fighting for their lives. A cure needs to be found and without donations, they don't have money for clinical trials. Thank you. We will update after Katie's appointment on Monday. Love you all.
Well, we finally sold our house. We have to be out by the 28th of March. Our new address will be 3006 Sunflower Drive, Grand Island, NE 68801. Yeah. We are all so excited to be moving. We have been really busy packing and moving already and the kids love to help (and get in the way). We are all well here. Katie had a great 4th birthday. She already looks older... Wow how she has grown. We are truly blessed to have Katie here with us. So many kids have lost their battle with cancer or are currently fighting. Please continue to pray for them and donate blood and platelets to help them. Without it, they wont make it. Also, we are approaching the Milestone Childhood Cancer walk in Omaha in June. We will again be raising money for childhood cancer research. Last year was a great success and we want to raise more this year. If you would like to make a donation please make checks payable to Curesearch and send it to our address above. All the money raised goes to Childhood cancer research. Its also tax deductible. Thank you all for your continued prays and love. Have a great day.
HAPPY BIRTHDAY TO OUR KATIE GIRL ON MARCH 8, 2008. SHE WILL BE THE BIG 4... We are so proud to be celebrating this with her. She has come so far and we are so proud of our Katie Girl. Looking back since her diagnosis, we have learned so many things, met so many wonderful friends, and realized what is really means to live each day as if it's your last. Please help us in celebrating Katie and her life by leaving her a message on her website. We will read them to her on her birthday. She loves to look at herself on the website. Everything else is going great. Katie is learning new things daily. She received a mini guitar for her birthday from grandma and loves to sing songs to her babies. Thanks for checking on our girl. We love to see that people are still visiting the site, but please leave Katie a message. Thanks.
Thought I better update since its been a while. You know what they say, no news is good news. Katie has been doing great. We finally got the kids pictures taken a couple weeks ago and they turned out great. Katie loves to pose for the camera. We are getting ready to plan a party for Katie's 4th birthday. I cant believe our baby is already 4 on March 8th. WOW, how time flies. We are still in the process of trying to sell our house. It has been on the market for about 4 months now. Hopefully, the Spring market will pick up here soon. Thanks for checking on us. Continue to pray for Katie's good health.
Katie had a successful surgery on January 4, 2008. The dentist capped four of her teeth with silver caps. She ended up having to pull a tooth in the front because it was so badly damaged. The surgery took about 4 1/2 hours, Katie's longest surgery to date. She did so well and was ready to eat something about an hour later. The dentist said she will feel so much better because all she knew was the pain she felt in her mouth and now it will feel so much better to her and she should sleep better and eat better for us. Katie, otherwise, is very healthy right now. We don't have to go back to any doctors until April. Then we will have to see the Oncologist, Eye Doctor, Neurologist, Neurosurgeon, Ear, Nose and Throat Doctor and Dentist. That should be a really fun trip :) Thanks for checking on our little girl. Please continue to pray for good health for her forever. Thanks. The Camerons
Well, here we are again with another surgery scheduled for Katie. We went to the Tooth Fairy in Kearney on Monday. The doctor looked at her teeth and said she has to have several caps put on and she has a lot of cavities. She is sure this is from all the chemo and meds that Katie has taken. Her surgery is scheduled for January 4, 2008, at Good Samaritan Hospital in Kearney. She is scheduled for a 3 hour surgery. They will put her completely out so they can do everything at once. We also had another exciting weekend with Katie. We had pictures scheduled at Sears on Saturday. We were getting ready and I had my curling iron plugged in to fix Katie's hair (yes, you guessed it) she touched the hot curling iron and burned herself on the top of her hand and arm. Not sure what happened, we weren't present when she did this. Immediately we rushed her to the ER and they put burn cream on it and covered it. We had to see Dr. Kutliek for a follow up on Monday. Her burn was blistered all over. They had to peal the dead skin off the top of her burn. Boy did she scream. What next, hasn't this child had enough already.... On top of all that, she had the stomach flu on Monday when we took her to the dentist in Kearney. She even managed to throw up all over Grandma at the dentists office. I was kind of amused and glad it wasn't me. Thank goodness Grandma is such a good sport. Please pray for Katie to remain Cancer free and for her luck to turn in the right direction for once. Have a great Thanksgiving.
Well, we took Katie to the dentist for the first time on Thursday. She was really scared because it was a new medical environment with different chairs than she is use to. They did manage to get x-rays done and the results weren't good. She has several cavities. Also, the enamel on her teeth is coming off. We think this is a side effect from the chemo she received. If anyone else has had this issue, let me know. Anyway, the dentist referred us to a special children's dentist. So we are going to the Tooth Fairy on Monday for a consultation. From what I understand, they will put her under and fix everything at once. Great, that's all we need is more surgeries. Its always something with poor little Katie girl. I will update after our appointment next week. Otherwise, she is doing great, except for constant ear and sinus infections. It seems we are going to the doctor every week. Anyway, please pray for all the kids fighting this disease. In the last week, I know of 3 kids who have passed away from leukemia. This has got to stop. We are going to do the annual Cure Search Walk in Omaha this summer again. We raised over $1,600 last year and hope to raise more this year. Have a great holiday season and give those kids a huge. The Camerons
Another fantastic checkup on Monday. We went to the eye doctor and he said her eye looks great. They dilated her eye and he said we will watch her closely until age 9 or 10 to see if her vision is okay in her bad eye. We talked about putting a weight in so her eye closes, but that is something we have to talk to a plastic surgeon about. He doesn't want to see us for 6 months. We then headed to Childrens Hem/Onc. for her bloodwork and checkup. They were kinda backed up so we waited a long time to get her blood taken and they went to clinic and waited for over an hour to see the doctor. Her oncologist said her bloodwork looked beautiful and she looked great. She said we could now wait for 4-6 months before seeing her again. The longer in between the appointments, the better in the cancer world. Katie also received a flu shot at the clinic on Monday. It didn't go so well. She screamed, of course, and then pulled away when the nurse was putting the needle in her leg. All night last night she refused to walk on her leg and cried all night long. We tried to ice it, which seemed to help a little. She woke up this morning with a temperature and still refuses to walk on her leg. Hopefully it's just a side effect from the shot. We are so thankful for the great news at her doctor's visit. Praise God. Please continue to pray for Katie and all the other children and adults fighting this horrible disease.
I guess its time for another update. Katie's eye is doing GREAT. It looks so good. We will be heading to Omaha on October 29th for an eye appointment checkup and Katie's three month oncology checkup and bloodwork. Please pray for Katie to have normal counts. We have been busy around our house getting ready to sell our home. We put the house on the market a couple weeks ago. We will be purchasing Scott's mom's home at 3006 Sunflower Drive. We will probably be moving sometime early in March 2008. We have had a few lookers, but that's about it. If you know of anyone in the market for a house in a great neighborhood, call us.. October is a very frustrating month for us. It is breast cancer awareness month and everything is PINK and that is all you hear about. Well, what about last month when it was Childhood Cancer Awareness Month???? Where was all the publicity for that?? Don't get me wrong, cancer is cancer and we need to find a cure for all of it, however, why is childhood cancer not as recognized as others. Its very frustrating at times. We try to do as we can for the cause and to raise awareness and will continue to do so until a cure is found. We will update more after her appointment next week. Thanks for checking on us. We love that you still care enough to continue to check on us.
Katie made it through her surgery with no
real complications. We arrived at Children's last Friday at 5:30 a.m.
About 30 minutes before surgery, they gave Katie an oral med to relax
her. That worked great and she had not a care in the world. They
didn't start an IV until she was under with the bubble gum smelling face
mask. They really do think of everything at that hospital. When she
woke up from surgery she was very mad and was crying hysterically.
Finally, Grandma was able to calm her down. She was released about an
hour later. Her eye was really sore and swollen, but she handled it
like the champ she is. We got to stay a couple nights with Aunt Colleen
and Aunt Jo. Katie had a blast being spoiled by them. We will go back
to Omaha for her 3 month checkup with her oncologist in November as well
as the eye doctor follow up. Thanks for checking. Leave Katie a
message, she loves to hear from you all..
This weekend we had a slumber party for Tyler. He had three of his neighborhood friends over. Katie really enjoyed hanging with the boys. Here are some pictures to show how big the kids are getting. Katie absolutely loves preschool and is doing really good there. She has really grown up. Katie's surgery is in two weeks and we are getting nervous for her. We will be staying with Aunt Colleen and we cant wait to see them. We will try to update more often. Remember to read Katie's story on September 29th. Thanks for checking on us.
Just wanted to let everyone know that
Katie's story will be featured in the Grand Island Independent on
September 29, Saturday, in the "My Life" section. The photographer for
the newspaper took some really cute pictures of Katie, so you will have
to check it out.
Today is the 2nd year anniversary since
Katie was admitted to Childrens Hospital. Tomorrow is the 2 year
anniversary when she was diagnosed with cancer. It seems like a
lifetime ago, but yet like yesterday. I relive this event over and over
several times daily. It does get easier to deal with the more time that
passes, but there is always that fear of relapse in the back of our
minds. We will be celebrating Katie's life and all she has been through
tonight as a family. We will not think of this day as a horrible day,
but we want to celebrate how far she has come and the fact that 2 years
later she is with us and IN REMISSION... Please say a little prayer for
her tonight and leave her a message in her guestbook. She would really
enjoy that. She started preschool this week and absolutely loves it.
We are so proud of her. She has a long road ahead, but she is a very
strong little girl.
We went to Omaha last week for Katie's doctor appointments. Her blood work was normal and the doctor said she looked great. We also went to the eye doctor. He has scheduled Katie for surgery on September 28th at Childrens Hospital. It will be out patient surgery. He will be pinning her eye so it is not crossed and it will help with it being lazy also. I am not sure about the specifics yet, but hopefully it will help her use her eye more. He said if she doesn't start using it, she will be blind in that eye. She wont wear her patch, which helps make her bad eye strong, so surgery is really the only option now. Please pray for her surgery to be successful. The kids are going to start school soon. Tyler is not too excited, but Katie cant wait. She wants to be like her big brother and be in school. Not much else going on. Thanks for checking on us.
We are all enjoying summer and spending a lot of time outside swimming. School will be starting soon, so we are trying to get the kids ready for that. Katie will start preschool this year and she is so excited. We got her a Dora back pack for school and she carries it around everywhere she goes now. Tyler will start the 2nd grade this year. Katie goes to Omaha for a checkup on August 10th. Her last appointment was June 8th and they say we can wait 3 months, but I am a little over anxious and I think that's too long, so we will go a month earlier. A little girl Katie's age from Omaha had AML like Katie and finished her treatment in May of 2006. She just recently relapsed and her family is really struggling with this, as anyone would be. Take time and visit her site at www.caringbridge.org and type in lilyleyden. They would appreciate any support right now. We will continue to enjoy the summer and Katie's good health. Please leave us a message for Katie. She would love to know that people were still checking on her. Have a great summer.
Just wanted to pass along that Katie will be featured in the GI Independent as one of their cancer stories. The series begins in August so I am not for sure when hers will be published, but I will let you all know so you can watch for it. Katie is doing well otherwise. She absolutely loves going to day care with Tyler and is growing and developing each and every day and we are soooo proud of our little one for how far she has come. God Bless.
Well, Katie had another perfect checkup on June 7th. I was really worried about this appointment for some reason, but it turned out okay. We had the Cure Search Walk in Omaha on Saturday. Thanks to all our family and friends who were able to be there. Our team raised $1,705.00 and the total of all the teams was $100,000. WOW. All that money goes to childhood cancer research. It was an awesome walk and we were glad to see some of our nurses and doctors from the hospital. Katie received a metal of courage along with all the other cancer survivors. It was a great weekend. Nothing else new here. Scott and I will be going to Omaha with some friends on June 22nd thru the 24th for my big 30th birthday party. Cant believe I am that old. Thanks for checking on us. Have a great summer. We will be going back to Omaha around August or September.
Hello all. Well, it's been a while since our last update. We are all doing fine. We are going to Omaha on Friday, June 8th for a checkup. We are also participating in the Curesearch Walk on Saturday in Omaha. Our team has raised close to $1,600.00 for childhood cancer research. Katie continues to do well. Tyler and Katie started back at their previous daycare they went to "before cancer". She loves it and I think its really good for her to interact with the other kids. Tyler just goes with the flow. We will update after her appointment on Friday. Have a great day and thanks for checking on us.
Hello again. We need everyone's help. There is a little boy who is 4 months old and has leukemia. His doctors gave him a 15% chance of survival. He has been undergoing chemo treatments at St. Jude's Childrens Hospital. He will need to have a bone marrow transplant, but there is a problem. Just this week his parents were told by the doctors that they could not find a close enough match for him on the registry. His parent are asking people from every state to get on the bone marrow registry or hold a bone marrow drive in his honor. Here is how you can help:: Tanya Custer from Omaha, Ne, has set up a bone marrow drive in Ethan's honor and it will be on May 19th at a church. If you will be around Omaha during that time or would like to donate to their family, please contact me ASAP. We also need some volunteers to help us out that day. His website is www.ethanpowell.com. Please help this family. Without a transplant, he may not survive...
We had a checkup in Omaha on April 25th and Katie's bloodwork looked perfect. The doctor said she looks great. The eye doctor would like her to continue wearing the patch daily. We don't need to go back until July... Please consider joining my team for the Curesearch walk on June 9th 2007. We need some more team members. If you are unable to walk with us, please consider making a donation on Katie's behalf. They can be sent to me at my address: 2411 Cochin Street, Grand Island, NE 68801. Make the check payable to Cure Search. Thank you for your support. We need all the help we can get to fight and find a cure for childhood cancer.
Hello everyone. All is well with us. Katie continues to do well and is your typical 3 year old with an attitude. I would like to ask everyone to join our team, Katie's Crew, for the annual Curesearch walk in Omaha, Ne, on June 9th, from 8-10 a.m. at Village Point shopping center. We need people for her team and we want all of you to join or pledge money to help fight childhood cancer. Please contact me if you are interest. If you want additional information, you can go to curesearch.org to find out more. We would really appreciate your contribution and if possible, would love for you all to walk with us on this day. Thanks for your support. Wendy (308) 381-2881
All is well here. The entire family had the stomach flu last week and thank goodness that's over. Katie actually threw up at Menards, which was quit a scene. Anyway, we are all better. Tyler is getting ready for his birthday which is April 6th. He will be 7 years old. Just a quick note to tell everyone that 105.9 is doing a radiothon for St. Jude's Research Hospital on March 22 and 23rd. Please consider a donation to St. Jude's for cancer research and to help the families who cannot afford treatment for their children. Its a great cause. I have officially become a bone marrow donor. I felt like I should be doing something more for cancer and to help the kids win this fight. By being a donor, all I had to do was to log on to www.marrow.org/join and fill out a short form. The cost is $52.00 for the tissue testing. They will be sending me a kit in the mail to swap my cheek and send back to them. Then I will be able to hopefully save a life.... If anyone else is interested in this, please log on to the website at www.marrow.org and join. What a gift that could be for someone battling cancer. I know the cost is a little high, but just figure that is one night out at a movie and to dinner and instead, you can save a LIFE.... Thanks for checking on us.
HAPPY BIRTHDAY KATIE GIRL. Our little girl is 3 years old today. Wow, its hard to believe everything she has been through in her three short years of life. We are so thankful to have her with us today and cherish everyday we have with her. We will be having a birthday party for Katie on Saturday, March 10, at 4:00 p.m. at our house. Please join us if you can. Katie continues to do great. She is learning more and more words all the time and actually trying to put small sentences together. She adores her big brother and they have a great time playing together (most of the time:) We bought Katie a princess dress and doll in Disney Land for her birthday since she LOVED the princesses at Magic Kingdom. We will also have a princess cake for her. Thanks for checking on us. We love you all.....
Well, we made it back from Disney World safe and sound. Katie went for her checkup before we left on February 21st. Her bloodwork looked great and she doesn't need to go back for another 2-3 months. Our trip went great. The airplane ride there was quiet, but back Katie decided to throw a fit on both flights. We stayed at a place called Give Kids the World, which is a special place for kids with life threatening illnesses to stay. It was actually a condo and it was a really nice place. They had several Villas and lots of activities for the kids to do, a pool, free place to eat, ice cream shop with free ice cream whenever, train rides, visits from Disney characters, Santa visits, etc. We made it to 5 theme parks and they were great. Katie got a little fed up with all the walking and activities and boy did she let us know it. Tyler really enjoyed it, but he got sick on Monday with a high fever so the last couple of days were hard on him. The kids got lots of toys from every park and met a lot of their favorite Disney characters. It was a great time for all of us, but always good to come home. Katie will be turning 3 on March 8th. We will be having a birthday party for her at our house on March 10th, Saturday, at 4 p.m. Please join us if you can. Let me know ahead of time because we will be having supper. Thanks for checking on us and we will update when we get our pictures from the trip back.
Just a note to let everyone know that Make A Wish is having a send off party for us before we go to Disney Land. It will be February 10 @ 5:30 p.m. @ Valentinos. If you can join us, please call me 381-2881. We are leaving for Disney Land on February 21st, which is exactly one year from the day we came home from the hospital to Grand Island. Weird huh... We are all so excited about getting away for a while. Not much new going on. Katie continues to improve each and everyday. We are so blessed to have her with us today. Thanks for checking. Hope to see you on February 10th. Another party coming soon will be when Katie turns 3 on March 8, 2007. WOW.....
We went to Omaha on January 4th for another checkup. Once again, her bloodwork looks perfect and they say Katie looks great. We now only have to go once every two to three months. We are so relieved about this. It will be a little hard to not have that reassurance of going every month, but I know it will get easier, hopefully. We also went to the eye doctor and he said her cornea looks great and we are doing a good job of keeping it moist so it doesn't dry out. He wants us to continue to patch the good eye so she is forced to use the bad one. He also prescribed us some eye drops for the good eye which dialate her eye and force her to use the bad once in case she takes her patch off. It has some pretty bad side effects and he said if we would get it in our eye, we wont be able to see for two weeks... We are to call him in three weeks and let him know how she is doing. Make a Wish called and we will be going on our trip to Disney Land in Florida on February 21 through the 28th. The kids are soooo excited. It will be good for us all to get away and have some fun with no worries. On another note, I started working at the Law Office where I use to work when Katie was diagnosed. They called and said my job was open and I decided to go back. I started back on Jan 2 and I love working there again. Its a lot more money than I was making at the Crisis Center, but I loved both jobs. My mom continues to watch the kids and we couldn't do it without her, she is such a blessing to have around and makes our lives a lot easier. Thanks for continuing to check on us. Take care and we will update soon.
Another great checkup for Katie on Monday. We went to the neurosurgeon first and they took x-rays and a CT scan of Katie's shunt since she has been complaining that her neck hurt. They said the CT looks better than before and they think her neck hurts because she is growing and can probably feel the shunt. We then went to the eye doctor. He said she still has a very dry eye on the left side so he put some antibiotic in it and patched it up. He then told us to return today to see if that helped at all. Scott and my mom will be taking her back up to Omaha again today to see what he says. She kept the patch on the entire night, what a trooper. She did, however, get a new baby out of the deal. Lastly, we went to hem/onc. All the nurses and doctors cant believe how much Katie has grown. We did her bloodwork and it was perfect. THANK GOODNESS... We talked to Dr. Thompson about the chances of the cancer coming back. She said with the protocol that Katie was on, they have a success rate of 65% that the cancer wont come back with the chemo she was on. Katie has been in remission for over 15 months so that is definitely a good sign. Hope everyone has a great Christmas.
Make a Wish came to visit us a couple weeks ago and it sounds like we are going to get to go to Disney World soon. We will find out soon for sure, but the kids are sure excited about it. Katie has another follow up appointment in Omaha on Monday, December 4th, so pray for us that everything looks okay. February 1st it will be a year since her last chemo treatment so I believe we will only have to go to Omaha for checkups every three months. Everyday is a rollercoaster of emotions for me STILL after almost a year, but its not something that can be helped. I have good days and I have bad ones, but I am dealing the best I can. We will update after her appointment next week. Have a great holiday season and cherish your family:)
Another great appointment on Monday in Omaha. Her bloodwork was all normal (thank goodness). She got her finger poked and didn't even cry. We then had to have a nerve test done on her face by the Ear, Nose and Throat doctor. The test shocked certain parts of her face and she didn't cry once. The nurse said she was so impressed and said some adults don't even do that well with the test. The test showed that Katie's left side of her face has only 38% degeneration on it. He said this is very good news and has hope that the left side will continue to come back. He doesn't want to do surgery at this time because of the test results and with her young age, he's very hopeful. We will go back to the eye doctor on December 4th to see what we do next. So, all good news here. Thanks for checking on us. Love you all.
Well, we had another successful appointment on Wednesday. We went to the ears, nose and throat doctor first. He said he wants to do a test on her face to see how much function is there before they consider surgery. That test is scheduled for November 6th and they want us to give her some benedryl before so she is sleepy. Next we went to her oncologist and had her blood work done. Her bloodwork came back perfectly normal with no concerns. The doctors said she looks good. Her final appointment was with Dr. Wright, the neurologist. The last time Dr. Wright saw Katie was when she was in ICU last year. The doctor said I am surprised you even want to see my face again. I asked why and she said because she was one of the doctors who had to give us the bad news last year that our little girl might not survive. I told her we are grateful for everything they did to save her. Dr. Wright wants Katie to start working with a speech therapist and physical therapist to help with speech. She also thinks Katie should have a hearing test because she said sometimes with part of the brain is injured where hers was, the hearing can be affected if the speech is. The doctor will contact Katie's eye doctor and hopefully we can at least get her scheduled for eye surgery to correct that. Needless to say, it was a very long day. Scott had surgery for his nerve damage on his arm on Tuesday. The surgery took about an hour and he was in recovery for about an hour and a half. It was outpatient surgery so I was able to take him to Aunt Colleen's house to recover. Its never a dull moment around our house. We are wondering if moving to Omaha would be better for Katie and her recovery since all the doctors are there and Omaha would have more options for speech and physical therapy??? Well, thanks for checking on us. Sorry 5th floor nurses, we were not able to stop by and say hi because of all her appointments. I promise next time we will. We miss you all.
Well, we had a great checkup yesterday at Katie's doctor appointments. First, we went to her eye doctor. He has decided they will be doing surgery to pin her eye in place since it still is crossing. The plastic surgeon will also be putting a weight in her eye lid at the same time which will help her eye close better so it doesn't dry out so much. They will probably be scheduling it for sometime next month. Next, we saw Dr. Thompson, her oncologist. Katie's counts were perfect and everyone at the Clinic said she looks great. Lastly, we saw her neurosurgeon. He said her shunt seemed to be working great and talked to us about surgery to help her face a little since it has palsy on the left side. He referred us to a ear, nose and throat doctor who will be helping him with the surgery. This doctor will be responsible for finding the nerve in Katie's neck and then Dr. Puchioni will place the nerve in Katie's face to help it. He said she is not too young at this point and its something that could be done soon. So we scheduled an appointment with that doctor for September 27 so we can finalize the plans. That was the end of all our appointments and Katie was such a trooper. She actually started getting excited when we pulled into the hospital parking garage??? Just goes to show what an angel and strong girl she is. We always get so nervous when we have to go back because you never know. What a relief we feel right now. We are so blessed to have Katie back and in great health. Thank you all for checking on us. Love you all.
Well, its been a while since our last update. All is well with us. Katie has to go to the clinic in GI today because she has a strange rash all over her body. Hopefully its nothing, but of course I am freaking out. She is doing well otherwise. We are trying to potty train her, but you know how that goes. She is such a ball of fire, always keeps us on our toes. Tyler is getting ready for school next week. He says he is not excited, but I think he is. He will be going to Starr this year since its so close to our house. He can walk or ride his bike. Scott and I have been busy with work. We have appointments in Omaha on August 31, so we will be sure to update as soon as we know how it goes. Thanks for checking on us. Please pray for all the children fighting this disease. Love ya all.
We had Katie's checkup at the clinic in
Omaha on Monday. Her blood work came back good with no concerns and they
said she looks great. We also saw the eye doctor and he said her eye is
getting a little better with the crossing in the left eye. He wants to
put off surgery until he sees her again to see if there is any
improvement. We got to see all our wonderful nurses while we were there.
They couldn't believe all her hair she had and that she was walking. I
have finally gone back to work this week. I now work at the Crisis
Center and my mom watches the kids, thank goodness. I really don't know
what we would do without her. It was hard the first couple of days for
Katie and myself, but she did fine when mommy left. Not much else new
here.
Sorry it has been a while since our last update. We participated in the Relay for Life last Friday. Katie walked around the track for her survivor lap all by herself. She is now walking all over the place. I think she found out it is easier to get around that way. We didn't last long at the event because Katie was crabby. The next day she came down with a horrible cold. She had lots of green puss in her eyes and she couldn't even see out of them. We called the on call doctor and they called in a prescription for her along with eye drops. She is doing much better now. We get so scared when she gets sick, but we try not to worry too much. Scott did not win the Father's Day Contest, but we are so proud of him anyway. Not much else going on around here. Take care and we will update soon.
Well, Katie is thriving as usual. She is such a strong little girl. She is very healthy and gaining lots of weight. I think she is just making up for the time she couldn't eat when she was getting chemo. We will be walking in her honor on June 23 at Central Catholic at 6 p.m. for the Relay for Life. Please come and join us and walk a lap for her. We have some good news.
Katie had a successful visit with her doctors on June 1st. We saw the neurosurgeon first and he said it was very possible that her palsy in her face and eye would not come back because it has already been 9 months. We then had blood work at the hospital. They had a nice banner hanging on the wall in the clinic for Katie for her end of treatment. It was a nice surprise. We then went to the eye doctor and he wants to schedule surgery to have her eye pinned in place. We are looking at July, but still getting it all worked out. After all that, we then had to go to a plastic surgeon and wait over 2 1/2 hours to see him. The eye doctor recommended we see him because he would be the one putting a weight on her eye lid to help it close better, but he said its not the best. We could also choose to sew her eye half way shut to help it close, but I think we will pass on that one. So after a very, very long day we headed home around 5 p.m. Katie was so tired and screaming the entire way home. Mommy was speeding to get home faster and of course, got a ticket. Glad that day is over. So Katie is doing well and we are enjoying her.
Not much new going on here. Katie is growing everyday and learning
more things. Her hair is now standing pretty much straight up, but its
so cute.
We had Katie's monthly checkup on May 1st. We went to the eye doctor
and he dilated her eyes. He said she is cross eyed and has a lazy eye so
we have to patch her good eye all but two hours out of the day. He wants
us to call him in two weeks to see how that is working. Her oncology
checkup went well and her blood came back okay. Thank God everyday for
that. She then went to get her line out and did so good. Scott and I
were so proud of her. She barely cried and was so strong. She can take a
bath on Thursday so were are so excited to put her in there. Its been
over 8 months since her last bath.
Katie is doing fine. We went to the eye doctor today and they didn't really tell us anything we didn't already know. We will be going to Omaha for her checkup on Monday, June 1, and they will also be taking her central line out. What a relief that she is drinking what she needs to and we no longer need to hydrate her at home. It will be so nice to have that thing out of her. Not a pleasant time when they pull it out though. She continues to practice walking and we have started to teach her some sign language so she can better communicate with us. She is picking it up very quickly. Not much else new here. Continue to pray for her to stay in remission. Thanks for checking on us. We love you all.
Sorry its been a while since our last update. Katie continues to thrive at home and loves every minute of it. Tonight she started to walk on her own. She can now take about 5-8 steps on her own. We are soooo proud of her. We will be going back on May 1 to get her IVIG and then we go at 3:00 p.m. that day and surgery will take her central line out, finally. She will be awake, but they will give her a local to help, which it doesn't. We can now venture out to Wal-Mart and anywhere we want because her counts are up. She really enjoys shopping and she wants to eat all the food at the store. Her sore on her heel is not healing very well at all. It looks the same, except its now black. We want to tell Bob and Jeri Harness thank you so much for their generous donation to our family every month. Its so much appreciated and we hope you know how much we appreciate you. Thanks so much. Well, that's about all for now. No new injuries to the family. We did not receive a call from the Clinic about her bone marrow aspiration, but I am assuming that if they found anything bad, they surely would have called by now. So, no news is good news I guess.
Katie got her cast off
today. When they took the cast off we noticed a big black nickel size
scab on her ankle. They said it was a pressure spot and put her on
antibiotics. We are sending a picture and hopefully you can see what we
see. Its so gross, but it doesn't seem to hurt very much. We have to
go back to the doctor in GI in a couple days to see if its healing
well. She is so funny when she crawls because she keeps her leg
straight as if her cast is still on. Otherwise, she is your typical two
year old. Tyler's 6th birthday is Thursday so we are having a party for
him on Saturday. He is so excited he can hardly stand it. As nurse
Lisa said, there is always something exciting happening with us, most of
which is no good. So stayed tuned........
Well, we couldn't have asked for a better checkup on Friday. Katie's bone density test came back normal and her bone marrow aspiration looked good when Dr. Thompson looked at it under the microscope, but they have to send it to the lab for the official results. Katie's counts are up and where they need to be. It was a long couple days for us. We didn't get to see everyone at the hospital that we wanted to. We didn't get done until Friday after 5 p.m. and by then Katie was soooo tired from her long day that we decided we needed to just take her home. Sorry nurse Lisa. We promise to see you next visit. We love you. She will have a checkup in another four weeks and get her line out. Then she can actually take a bath. Its been seven months. She tolerated her IVIG well with no reactions. We stayed at Colleens house and Katie had a wonderful time with her and they made cookies like they use to. Thanks for checking on us.
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