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October Updates |
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 Katie has had a few setbacks on Saturday. She ran a low grade fever so they did a blood culture and found an infection growing in her central line on both lumens. They had to remove the central line yesterday to get rid of the source of the infection and they are treating her with antibiotics. They then had to start an IV in her foot so she could still get her medicine. It took three tries, but they finally got it. Aunt Colleen and Jo went in with her for these procedures and thank goodness for that because I don't think Scott or I could have handled it. Her counts went from 74 Friday to almost 800 yesterday
and now 1100 today. We will be getting another CT scan
tomorrow. They really cant do the shunt or any kind of
surgery now because of her infection. They will put in a new
central line on the other side in about 4 days, which will
require her to go under anesthesia. Her Please pray that this infection gets cleared up fast. Love You all.
Katie was a little irritable today. We just found out
they found a positive blood culture which shows Katie has an
infection in one of her central line lumens. They will start
antiobiotics and hopefully that will get rid of it. Love You all.
Katie had a pretty good day today. She received her flu shot and did remarkably well with it, better than I did watching it. She went for a car ride all around and walked a little with her walker. Her counts are still at 0, but should now start to increase over the weekend. Her next chemo cycle is only 5 days long, yah. Right now she is trying to sleep. She is running a temperature of 100.4 so they have to call the Resident and see what to do. We have been so fortunate so far, but we just have to be
extra careful washing our hands and all her toys constantly.
The doctors and nurses keep saying how good she is looking.
Love you all. Keep us in your prayers.
Katie had a good day today. She did the best she has ever done with drinking fluids for the feeding and swallowing people. She also walked a lot with her new walker. I wish I could post pictures, but we cant seem to send them with our camera phones anymore. She received the IV/IG, which is antibodies, that she had that horrible reaction to last time she received it. She did okay, but did get the shivers and a fever, which were taken care of with benedryl and Tylenol. She will be getting a flu shot tomorrow to protect her from getting anything when her counts are so low. The occupational therapist said she is about at her age level with her motor skills. She is doing things most toddlers her age are doing. Our nurses here on 5th floor are so great and take awesome care of us as well as Katie. They make it fun to be here when we are having bad days. Her oncologists are very good too and take the time to talk with us and answer all our questions in terms we understand. I pray that we have as good of a day tomorrow. Miss you all and cant wait to come home.
Katie had a good day today. She had a CT scan and the results were unchanged from last week. They will continue to do weekly scans to see if anything happens. She used her walker again in the playroom and went on a car ride around 5th floor. She does so well wearing her mask and knows she has to wear it to be able to go out and play. The oncologists seem to be happy with the amount of calories she is taking in each day. She had pureed peanut butter and jelly sandwich with some mashed potatoes and gravy for dinner. You can only image what that stuff looks like after coming out of the blender. I can hardly stomach feeding her sometimes, but as long as it tastes the same, right???... Tomorrow will be our 2 month anniversary since we arrived
here in the hospital. What unbelievable progress she has
made in a short time. She keeps everyone on 5th floor pretty
entertained. We received a letter from the Cancer Society
saying that they cant help us out with travel costs and bill
paying, which they usually do for everyone, because of the
recent hurricanes. I really don't understand because there
are people like us who need help to. Oh well, what can we
do. Please continue to visit us and pray for our little one.
We love you all.
Katie has had a pretty good couple of days. Her counts are around 0, but she has not had a fever yet. They will be doing a CT scan tomorrow to see what the ventricles look like. They will most likely still be putting in a shut in a week or so, but they are still going to do the scans on a regular basis. A shunt is placed on the inside of her head and a tube goes down to her stomach to drain the fluid, so you will not even notice it at all. She stood up on her own in the playroom on Sunday and they brought her a walker to practice with. She used the walker and walked from the playroom to about halfway up the hallway to her room. She is such a determined little girl and does what she sets her mind to. We are so thankful for each day with her. Katie is doing well with her pureed foods, however, she still cant have any liquids until they work with her more. She needs about 1,000 calories each day, and is currently only eating around 800. Thanks again to everyone for the cards, donations and
visits to the hospital to see us. We really could not do
this without all your support. Just knowing that you all
read this site daily to check on her progress means more
than you will even know. We are so lucky...
Katie's counts are now down to around 2. She received some blood today,
which seems to always make her feel a little better. We are back on
Morphine because she has been so irritable. We think her head is really
hurting her because of the increased swelling. She had a good time in
the playroom today and played with her babies there. Tyler, Grandpa and
Grandma left today. Tyler seems to be feeling a little bit better and
doesn't seem to be in so much pain from his broken clavicle. He keeps
asking us to go
Katie had a busy day today. She worked with Occupational Therapy, Physical Therapy and Feeding and Swallowing. They managed to fix her broken central line, thank goodness. The neurosurgeons said they will have to put a shunt in when her counts come back up. She ate better today than she did yesterday. Her counts are down to 70 so she is feeling a little irritable. She gets very well taken care of here from all the wonderful nurses. She got to see the dogs that come to visit on Thursdays and loved it. I want to say thank you to Al and Lutana Gunning (my dad's aunt and uncle from Texas) for sending us the check. We really appreciate your generosity. Also, thank you to all our wonderful neighbors from Grand Island who have been taking care of our house and lawn. We miss you all and cant wait until we can come back home for good. Also, Leslie, Tricia and Brian for taking care of all our finances and keeping track of Katie's fund at Heritage Bank.Leslie, thank you for paying all our bills and dealing with all our creditors. You spend so much time and energy into it and we really appreciate it. Also, to all of our family and friends from GI who continue to send us cards and messages which keep us going, thank you Kiffin and Tony for also taking care of our truck and placing our dogs in good homes, such as your own. I cant even mention everyone and everything that everyone continues to do for us. I love you all. My wonderful parents and patient sister who calms me when my nerves are shot. Also, thanks to everyone that helps her out so she can come visit (Brian, Carrie, Bev, Mom, Dad, St. Francis). To the City of Grand Island, we DONT know what we would do without all the donated time you have given to Scott. Thanks to all of you, he is able to be here with Katie and myself and still get a paycheck to pay our bills. Thank you....Jay, you are doing awesome with this site. Thanks for you dedication and for always making time for us to update Katie's progress and sending us feedback each night.
Katie's CT scan came back and showed that her ventricles were getting larger. They will more than likely be putting shunts in, but don't want to do it right now because her counts are too low and the risk for complications during surgery are high. We also got her central line caught in the chair and it snapped in two. Surgery came in to fix it and it took two times before it worked. We have to wait until tomorrow to see if the line is working okay, otherwise, we might have to have surgery to reinsert the line. Also, Katie got mouth sores on the roof of her mouth from the chemo. She doesn't really want to eat anything because it hurts her too much. We have had a few major setbacks the last couple of days. Both of our children are sick and in pain and there is nothing we can do to help them. When you pray for Katie today, please also say a little prayer for Tyler and pray for him to heal from his injury quickly.
Scott and Wendy
We had a pretty crazy day today. Tyler broke his clavicle bone while
eating breakfast at Grandma's this morning. They went to the ER and the
doctor put a sling and brace on him. He will have to wear them for at
least two weeks.
Now to Katie, she is eating well and keeping most of it down now. Still
needs a lot of practice on drinking things. She did really well with her
physical therapy today and stood for about 10 minutes. She is getting a
CT scan now to check the pressure in her brain. Counts are falling and
she is now on a couple antibiotics to prevent infections. She is getting
more irritable since her counts are down to around 440 as of yesterday.
They will bottom out to 0 in the next couple of days, which means she
will have no white blood cells to fight off infection. Thanks for all
your love and support. Miss ya.
Katie slept well last night. She is still having a little trouble keeping her food and liquids down. The doctors said her counts are dropping so we have to be careful around her. The feeding and swallowing lady is still working with her on learning how to drink liquids. Her head became swollen again today, more than usual, so we had the neurosurgeon take a look. He told us to watch for signs such as throwing up, being extra sleepy and throwing fits. They will do a CT scan tomorrow or Wednesday to see if the pressure is the same or has increased. She is still a very happy baby and laughs all the time. I want to say a special thank you to our aunts Barbie and Jody for selling their own belongings on auction and donating the money to us. Also, for all the generous people at Barb's work who donated money to us. We really appreciate that. You two are very special people and we are lucky to have such a wonderful family. I cant believe all the support we have been getting and letters from others we don't even know who share their special stories with us. Love to all of you. PS. If anyone wants a 1997 Ford Expedition, or knows someone who wants one, please let us know. We are trying to get rid of Scott's truck so we can get a smaller vehicle when he has to drive back and forth. Thanks. Wendy and Scott
Katie had a pretty good day today. She has been tasting new foods, which made her throw up today. They have started to decrease her TPN and took away the Lipids to see how she does just eating on her own. She continues to say new words and that helps because we can communicate with her and find out what's wrong when she is crying. Her counts have dropped a little, which is to be expected. Sundays are pretty slow around here and not much happens. Love you all. Wendy and Scott
Katie's swallowing test went well and we are able to start feeding her mashed potatoes and baby food. She is also back on her bottle to get the Pedisure from that. She sneezed her nose tube out today and they aren't putting in back in unless she doesn't get all her nutrients from the food she eats. She loves to eat normal food again and is doing really well with it. Katie had her last dose of chemo tonight at 9 p.m. Now we wait for her counts to drop and start the antibiotics to fight off infection. Tyler was up Friday and we had him baptized by the Chaplin who did it for Katie a couple weeks ago. He didn't quite understand what it meant and asked if he would have to get a shot with the holy water. We actually got out of the hospital for a night and stayed with Aunt Jo. Aunt Colleen stayed with Katie and had a great time with her. We have such a wonderful support system with our family and friends and we don't know what we would do without you all.
Katie has learned to say more when she wants more food and yummy. Lots of love to all of you. Keep the prayers and good wishes coming. Miss everyone soooo much. Scott and Wendy
Katie had a great day today. She had her scans to check for pressure in her head and that was unchanged. They also did a scan of her tummy and said they do not see any signs of the tumor. Its so amazing how well she is doing. She had PT today and wanted to try to walk with daddy's help. She was a little shaky, but did a great job. She ate her peaches again today and tried to drink from her cup. We will know more about what she can eat and swallow after they do the test at 11:00 a.m. tomorrow. Everyone here is so great. She gets lots of visitors from the hospital staff that seen her in ICU and they are so amazed at her progress. We have a Candlelighters meeting tonight, which is held here in the hospital. She has two more days of chemo for this cycle. They increased her feedings (pedisure) to 25cc/hour and she is doing well with it. Once they get her to her maximum level, they can quit giving her the TPN and Lipids. Love and miss you all. Hopefully, we can be home by her 2 year birthday (March 8th) if all the treatments go well. Its just a waiting game, but its well worth the wait. Scott and Wendy
Katie was up this morning at 3:30 a.m. throwing up and never wanted to go back to bed. She is done with two of her chemo drugs for this cycle and has one more drug which will run until Saturday. Katie's protocol is 5 cycles of chemo that last ten days each. Then after each cycle you have to wait 2-3 weeks for her counts to come up to start the entire cycle over again. We will be done with the second cycle on Saturday. Even if she is in remission after the first one, she still has to complete the entire protocol or the cancer will probably come back. She had to receive a unit of blood because her count was down to 8. Her counts are still pretty good and the only reason she needed blood was because they have to take so much from her to test her levels every morning. She was pretty tired and grumpy today because she couldn't get more blood until about 9:30 p.m. when her chemo was done. The eye doctor came in and said she can definitely see, but not sure how much and we will need to go to his office to run tests, which wont be until she is done with the chemo protocol. Katie has been working on saying Daddy, but still only saying Mommy. Cant wait until tomorrow when they do the CT scan and see if the tumor is gone. Katie just said night night. Ty Ty and Daddy. WOW. Everyone that comes to see her can't believe how far she has come in only two weeks. She is such an amazing little angel and she surprises us everyday. We love you all. Come and see us. Thank you to Jeri Harness for the donation and for all you donate to other hospitals for ill children like Katie. That's such a wonderful thing to do. Thank you.
Love Scott and Wendy
Katie has been getting sick to her tummy from the chemo. When she does
throw up, everything it lands on has to go into a special toxic bucket
and they burn it since it has chemo in it. Gross, I know, but its what
we have to deal with daily and are getting use to all the gross stuff.
The doctor told us that there is no sign of cancer in her spinal fluid
either. When they do chemo, they have to do the spinal tap at the
beginning of the cycle, which injects chemo into the spine and it goes
up to the brain, which the chemo given from the central line doesn't
reach because of a barrier or something between the head and her body.
So at beginning of each cycle she will have to go to surgery and get the
spinal tap to inject chemo. She has been pulling herself up with the
rails on the crib and trying to crawl around. They will do the swallow
test on Friday to check her progress with eating to see if she is
swallowing and its going where it needs to go. The staff and doctors
here are awesome and they take good care of her as well as the two of
us. The doctor said at this point we will not need to get tested to see
if we are a match for her bone marrow, but to wait and see if the chemo
does the job. She is such a happy baby and smiles all the time and
laughs. It is such a miracle to watch her overcome her stroke and do new
things that we thought were not possible. She still has a long road of
physical therapy, but has come so far in a month. Please continue to
post your prayers and messages on her site and PLEASE don't forget about
us.
Guess who is in remission? The doctor said there are no signs of cancer cells. They will do a CT scan of her tummy and head on Thursday to check to see if the tumor is still there or not. They also want to continue doing follow up scans of her head to make sure the ventricles are staying the same and getting larger. She is very active today. We went to the playroom for a while and went on a couple of wagon rides. She actually kept her mask on.. Aunt Colleen bought her a phone and she loves it. We got a floor mat and she has been trying to crawl around on the floor. She is getting stronger and stronger everyday. She had some peaches today with the feeding and swallowing people and really seemed to like them. They increased for feedings from 15 cc per hour to 20 per hour and she seems to be tolerating it well. No side effects from the chemo so far. She is on day 3 and this is an 8 day cycle, but she will have to have the steroid drops for 10 days due to one of the chemo drugs that irritate her eyes. Grandma Rick is here for a few days to visit. We are going to ask the doctor tomorrow about getting a blood test to see if we are a match for bone marrow, if she would ever need a transplant. Please continue to tell everyone to donate blood.
Katie has been pretty active today. She is still handling her chemo pretty well. She went for a ride in her little red wagon and only made it around once. We had lots of visitors, which we always love. We should have her test results back tomorrow and will let everyone know as soon as we hear anything. She is saying Mama more and more and we are now working on Daddy, but that takes a lot more mouth and tongue strength. We had very special visitors, Molly, who went through this a year ago with the same kind of cancer as Katie has. She has been in remission for a year now and is a very healthy, happy little girl, which is what keeps us going. That is her in the picture with her dad and sister. They are a very special family. Thank you to my Aunt Barb and Jody for the cute magnets you made, that was very special and we have them sticking all over our car. We have had many requests for them. Also, thank you to Tanya and Mike Custer for sending us the nice card and money. We really appreciate it. Well that's all for now. Katie is getting very restless being in her crib and wants out. Love you all. Scott and Wendy
Katie started her chemo treatments today at 9:00 a.m. She is getting Zonfrane for the nausea and seems to be tolerating it pretty well. She is getting so strong and lifting her head and her body up more than she ever has. She gives kisses to her babies. She had a lot of visitors today which is always nice to have. Grandma, Grandpa, Tyler, Brian and Tricia all left today which is very hard for us. Tyler has been working on a book from a social worker which has him draw pictures of his feelings and the changes in his life. We bought him a costume for Halloween-Batman. Her CT scan came back as unchanged as before, which means no swelling. I cant believe we have been here for a month. It seems like about 5 years. I know she is a survivor and will overcome this and we will have a normal life someday. No matter what, this experience has brought everyone together for our special baby.
Thank you for your continued prayers and words of encouragement.
Scott and Wendy
Katie had a pretty rough day today. When she got back in her room from surgery, she began to throw up several times. They couldn't start her feedings until she was done. She got quite a few more times and her nose feeding tube came out of her nose and the part that is suppose to be in her stomach was in her mouth. So they had to take the tube out all together and reinsert it into her other nostril. She then began to throw up blood from the nose tube. It was awful.
She did not get any sleep today and was very irritated. We think she got
sick from the anesthesia, but no one really knows. We will not know the
results of the bone marrow biopsy until Monday afternoon. They will not
start her chemo until Saturday since she had such a bad day. Hopefully,
all goes well with this round of chemo. You never know as she has had
such a hard time reacting to everything else she has been given. I cant
wait until this is over. Thanks Jay for being so prompt when posting
updates. What you are doing is appreciated by everyone who reads this
site. You have no idea how much that means to us. Thank you.
She went into surgery at 11:05 a.m. It took about an hour and we are now
back in her room. She was pretty mad when she woke up, but they said she
did well in surgery. She got Morphine when she got back in her room and
now she is feeling good. It might take a few days to get the results of
the bone marrow back to see if she is in remission because I believe
they have to send them off somewhere. We will update again tonight.
Scott and Wendy
Katie was pretty irritable today. She is no longer on Morphine anymore, just Tylenol. Tomorrow is her busy day. She will have her CT in the morning to check her pressure in her head. At 11:00 a.m. she has her surgery for the bone biopsy, spinal tap to put chemo into her spine and maybe a scan of her tummy to see if the tumor is gone. She will need lots of prayers from all of you as it will be a very eventful day for her. Hopefully we will find out soon if she is in remission. Katie has been playing with daddy's bald head (as she is doing in the picture). She went on a couple wagon rides and went to the playroom with Aunt Colleen and Nikki. They said she did not like it very well so they came back. Katie said Mama today and Scott was here to witness it. Better get to bed as we have a BIG day tomorrow. Please pray for her to come through surgery well tomorrow. We will post a message as soon as she gets out and let everyone know how she is doing. Her big brother, Grandpa and Grandma, Aunt Tricia and Uncle Brian are all coming tomorrow to see us. Cant wait to see them. We promised Tyler we would take him to look for a Halloween costume when he is here. Love you all and miss you lots. Thanks again for all your love and support. Scott and Wendy
Katie's ANC is up to over 1000, so they might start her chemo again as early as Friday. Dr. Thompson said they will do the bone marrow test and spinal tap before that to see if she is in remission and the spinal tap to put the chemo into her spine. She also wants to check to see if her tumor is gone from her stomach. She was taken off the Ampho antiobiotic which is the one that caused her to have low blood pressure. We went for a ride in the wagon today. We did 11 laps, which is a mile. She will have a CT scan tomorrow or Friday to check on her brain pressure. The doctor said that from what they can see so far, it looks like there are no more cancer cells in her blood now from the first chemo. That means she is responding well to the chemo.
She did physical therapy today and was not happy about it. She also
worked with the feeding and swallowing people and also did not like that
very well. Thank you to all for your continued support and prayers. Please give blood if you can for our girl. Also pray that she has success in the next round of chemo, as she did with the first one. Scott and Wendy
Katie had a good day today. Her levels are slowly climbing. The doctor gave us permission to take her to the play room after 8:00 p.m. when no one else was in there since she wont wear a mask. She played for about 5 minutes and got very tired. She is doing new things every day like waving bye bye, shaking her head yes and no and shaking her bootie. We still believe she can only see out of her right eye. They increased her feedings and she seems to be tolerating them so far. She has not pulled the tube out of her nose yet, which is surprising to us. They will be taking her off some of her antibiotics as soon as tomorrow. We received a phone call from another family who went through this same kind of cancer with their 8 year old daughter over a year ago. She is in remission now and it was sooo nice to talk to others who are dealing with the exact same kind of cancer. She has a website like us and it was helpful for us to read so we know what to expect down the road. The staff are taking really good care of our Katie girl and we are very happy with this place. Please come see us if you are ever in the area. Keep us in your thoughts and prayers. We love you all.
Katie had her CT scan today in the morning, which showed the ventricles are the same size as last week. That means they will not have to put a shunt in. They will do another scan in a week to see if anything has changed. She had an NG tube put back in to her nose which goes to her stomach and they started feeding her Pedisure. She has tolerated it so far. Last time she had that in her nose she pulled it out, so we are crossing our fingers. We are going to continue working with the feeding and swallowing specialist to get her to eat on her own. The problem is they don't come in everyday. Her counts are up to around 500, which is good. They talked about doing a bone marrow test to see if she is in "remission". Remission does not mean cured, it means there are no cancer cells present at that time. Regardless, she will still have to complete the protocol for this type of cancer, which is 5 chemo treatments. They will start weaning her off the antibiotics as soon as her counts go up some more. I want to say thank you to a special lady, Sharon Schmidt, who heard about Katie last week from E-Free Church and asked what she could do to help us. She has never met any of us, but wanted to help. We received a check for $250.00 in the mail today from her. Thank you from the bottom of our hearts. Also, thank you to everyone from the Downtown Center for your support through all of this. I enjoy receiving mail and prayers from all of you. Please pray for a family here who had a house fire in Nebraska City a week ago. They had twin 3 month old girls and a toddler boy. One of the twins died as a result of the fire and the toddler boy is up here in ICU. They also lost everything they had in the fire. So many sad stories. Love you all. Wendy and Scott
Katie slept better last night then she has since we got here. The intern did come in at 1:00 a.m. because her blood pressure read 70/24 or something like that. The nurse was concerned and went to get him. He came in and told her to take in on her arm instead of her leg. She did and it went way up (Thank Goodness). She had a really good day today. She is interacting more with us and working on sitting up and holding up her head. She was up all day until about 4:00 p.m. and she finally feel asleep. She did waive bye bye to Uncle Brian and her cousin Blake. Of course I missed it. We will be doing the CT scan tomorrow to see what's going on with her pressure in her brain. She is not demonstrating any signs of more pressure physically so hopefully we can avoid the shunt. She is making great strides, but we still have such a long road ahead, sometimes its hard to even think about tomorrow. We love and miss you all. I miss being home.
Sorry we did not give an update yesterday. We were ordered to leave for
the night and Aunt Colleen spent the night with her. She did awesome and
was on top of everything. They are still watching for signs of pressure
in the brain, but say she looks okay today. She is less irritable and
plays with us and smiles a lot more. Grandma, Grandpa and Tyler are
leaving today. We had a good visit and I think Tyler is getting more
comfortable with the situation. Katie's counts are climbing daily, which
is good. Once the counts are where they should be, we start chemo again.
We will have 5 cycles of the chemo which are 10 days each. The last two
are a little different then the first three. We are adjusting to the
environment and meeting a lot of people here who are experiencing the
same thing, which really helps. Thank you to Aunt Barb, Jody for sending
Tyler and Katie the toys and money, Aunt Cathy for giving Grandma time
off to care for Tyler and visit us. Aunt Jo and Colleen for coming up or
calling daily and getting us anything we need. So glad they live here,
we couldn't do it without them.
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