 |
November Updates |
||||
 Katie was very tired today and slept most of the day. When her counts are down she doesn't have much energy at all. Her surgery to put her central line in was moved up to tomorrow at 2:30 p.m. which we are very glad about. The sooner the line goes back in the less she has to be poked to check her blood levels. Katie has gained about a 1 lb since Monday. She will be receiving platelets tomorrow before her surgery. They help her blood to clot. Not much to report today as it was a slow one. Omaha is getting some snow this evening. Katie enjoys watching it out the window. That's all for now. Love to you all....
Katie didn't have a very good day today. First of all, they are doing maintenance on our room so we are now in room 507, #955-3507. We had to move all our stuff down the hall and if you know us, we had a lot of stuff. We have to be here for 2 days and then they want to move us back to room 511, but we are protesting and hopefully, we don't have to move again. Then Katie's IV went bad and quit working so they had to pull it out. We then went to the treatment room to start another IV. It took lots of nurses and 5 tries, but finally they got one to work in her foot. We are scheduled to have surgery to get her central line put back in on Friday afternoon. Also, she had to have her finger poked twice to check her antibiotic levels. They have to poke her finger before they start the med and then 1/2 after its done to make sure she is getting the right dose. Her echocardiogram came back good, which means no infection in her heart. Katie continues to amaze us with her spirit and will to beat this cancer. She definitely keeps us going and it helps that her mommy and daddy can both be here with her. We will probably be spending Christmas here, but we will manage as we have done so far. We have sooo much to be thankful for this year and all we need is to be with family.
Katie had a pretty good day today. She had to get another finger poke to check her blood levels. Her ANC went back down to 0 again, which they say is normal. Infectious disease changed two of her antibiotics since they were no longer working because she was on them last time she had this same infection in her central line. She was a little more agitated today than she was yesterday and her color was really pale. They are saying she can get her line back in on Friday so they can wait until her counts come up a little. She had a CT scan to check her shunt and it looks okay. She also had her echocardiogram to check her heart for infection, but we haven't heard back on that test yet. Thank you Jeremy for posting those pictures of the storm in GI. It helps us feel a little closer to home. Miss and love you all. Keep praying for us....
Katie had a much better day today. She has not been running a temperature since they took her central line out yesterday. Her counts are slowing coming up and are at 69 today. Katie got her second half of her flu shot today. They have had to poke her fingers in the middle of the night to check her blood levels for her antibiotics. She will be getting her central line put back in Wednesday or Thursday. Hopefully, things will continue to go uphill from here. Tyler went home today after being here for 9 days. We had a lot of fun while he was here and we got to spend a lot of time with both the kids together at Colleens house. Thank you to all for your continued love and prayers for our baby.
We found out this morning that Katie has an infection in
her central line again so it had to be removed today and an
IV was started in her hand until the central line can be put
back in, which is 5 days. She had a reaction to one of the
antibiotics and got the shakes and had a temperature of
105.2. She will be on 3 different medicines over 14 days to clear up the bad infection. She is very angry to be back here and was very spoiled at aunt Colleen's house. She will have an echocardiogram in the morning to make sure her heart is okay. Katie has been up all day screaming most of the time. They don't put her out to pull out the line from her chest so she is really sore from that. They actually had some of her fat come out when they pulled the line out. Kind of gross I know, but cant image how it felt for her. We will be here for a while through her next round of chemo probably. Again, we are in room 511. Thank you to aunt Colleen and her family for making us feel welcome and helping out with Katie. It was a nice break and we couldn't have done it without all of them. Love you all.
Well, we came back to the hospital on Friday night about
6:30 p.m. because Katie started to shake a lot, but she did
not have a fever. When we arrived she started to run a
temperature of 102.8 so they took blood cultures and started
her on antibiotics. She got sick to her tummy around 12:00
a.m. We are now in Room 511 and the number is (402) 955-3511.
We are still staying with Aunt Colleen and will continue to do so as long as Katie does not get a temperature. We went to the Clinic Friday and she received platelets. Her counts are at 10. We will be coming back on Tuesday to get her IVIG and flu shot if we are not admitted back to the hospital by then. We had a great Thanksgiving with Colleen's family and my sister and her family. Katie started walking on her own on Thanksgiving. She takes about 4 steps, but doesn't always want to do it. She is still a little nervous about it still. We have no computer access where we are staying so we are sorry there has not been any updates. We will be in a different room when we go back to the hospital so we will let you all know when that time comes. Love you all.
We are still at Aunt Colleens house with Katie. We have a doctors appt. on Wed. so Katie can get some blood and or plats. She is doing OK for now. We know her counts are dropping to zero so we will be back at the hospital on Wed.or Thur. for good so we will update you then. Thank you to all the angels out there that are helping us and praying for our Katie girl. God bless you all, Scott & Wendy =)
Katie had a pretty good day today. She continues to be fever free, she just has a rash all over her body. She received blood today and that always makes her red also. She had her CT scan today, but we have not received the results yet. When her chemo is done tomorrow, the doctor wants us to leave for a few days with Katie to get out of the hospital. We will be going to Aunt Colleen's house in Omaha and Home Health Care will be checking in on us daily. We will have to give her medicine through her IV so they will come tomorrow to teach us all that before we go. We will be back Monday to the Clinic to have her blood drawn to check her levels. As soon as her counts start to drop, we will come back again, but wont be in the same room or have the same number. We will post that information when we know what's going on. We are very nervous to be leaving. We will also have to mash up all her food since she cant eat normal food yet or drink liquids. Daddy went and got Tyler today so he will stay with us over the holiday. We will try to do updates from our new location. Love you all.
Katie has a pretty bad rash today from her chemo. She has not been running a temperature at all today. She refused to take a nap so she is extra tired and difficult this evening. She will have a CT scan tomorrow to make sure the shunt is doing its job. Her last chemo for this cycle will be Saturday at 8 a.m. then we wait for her counts to drop and then come back up and start all over again. The hospital provided us a video phone so Tyler can see what's going on in Katie's room when he is not here. Hopefully, we can figure out how to use it. She worked with the feeding team today and they fed her little pieces of crackers and some thickened Pepsi. She learned how to drink from a straw again which shows she is getting stronger with her mouth movements. Cant wait for the day we can feed her regular food and she can drink from a cup. We love and miss you all. Please remember to donate blood for Katie and all the other sick people who need it.
Katie had a pretty rough day today. She continues to run a temperature and has now developed a rash all over her body. Her blood cultures did not show an infection, so its most likely caused from the chemo. Because of her rash and temperature, she cant leave the room. Thank goodness she only has two more days of this cycle. We have been contacted by another family from Kearney, NE, whose 17 month old son was diagnosed with AML, the same as Katie. Sadly enough, we have so much in common with them and hopefully we can help them out and prepare them for what to expect. The doctor said the protocol she is on is ending soon, which means they have enough kids on the study to close it. She said that they could possibly have the statistics out in about 6 months or so. They are starting her chemo now so we better go for now. Love you all.
Katie has not been feeling well today. She has been running a temperature of 101.5 and has not been eating well. The doctor said its from one of her chemo drugs. She has also been very sleepy today. We know she was sick because she didn't even want to talk on the phone. She took a long nap today and then we tried to take her for a walk, but she didn't want to go. They took a blood culture to see if she has an infection, but those results will take a couple days to get back. By the way, the pictures from yesterday with Cruilla Deville is Aunt Colleen dressed up on Halloween. We hope for a better day for Katie tomorrow. Miss you all.
Katie had her spinal tap done today at 11:15 a.m. Everything went okay and she was back to her room around 1:00 P.M. She did not get sick after the surgery like she usually does. Her first round of chemo started around 8:00 p.m. This round of chemo is a much higher dose than the first two, so they said she might get sick from it. She is on Zofran for her tummy. Her spirit has been good as usual. Daddy got her a pooh
bear balloon and a puppy after she got out of surgery and
she really liked to see that when she woke up from surgery.
I hope this round of chemo Please pray for her recover as soon as possible. Love Scott and Wendy
Not much to report this weekend. Katie is doing well with her walking and is only holding on to one of our hands now. She finished her antibiotics on Saturday. Her surgery for her spinal tap and bone marrow biopsy is scheduled for Monday at 11:00 a.m. That is when they inject the chemo into her spine and check her bone marrow to see if there are any cancer cells in it. She will then start her five day chemo cycle. Tyler is visiting over the weekend and she loves to play with her brother. Thank you all for your prayers.
Katie had another good day today. She did well with occupational therapy and started to work on chewing food with the feeding and swallowing team. She continues to go on her daily walks around the floor and has to stop and talk to everyone she sees. Scott and I attended the Candlelighters meeting tonight. Its a group with parents who have children with cancer. Its nice to hear everyone's story and talk about our own experience with Katie. They asked us to talk about the holiday season coming up and how it would change now that our children have cancer and we are in the hospital. We will most likely be here on Thanksgiving, but as long as we have our family around that's all that matters. We have so much to be thankful for and it means more this year after what we have been through. Life can change in an instant and when you least expect it. If only we could have prepared for this or would have known this would happen... So many what ifs and whys, but as we have learned from other families, take it one day at a time. We have truly met so many courageous families and we have learned so much from their experiences. We will forever be better people, spouses and parents.
Katie had a pretty good day today. She had her swallow study and it showed that she is not quite ready for liquids yet. If she does have them, they have to be thickened with Thick It. She also needs to work on her chewing. We really appreciate the City of Grand Island donating Scott time to be here with his daughter as she is a daddy's girl. We would really appreciate if any more time could be donated because his time is running out and he needs to be here with Katie and Mommy. Thank you all for what you do. Katie enjoys talking on the phone so feel free to call here anytime. Tyler is coming up tomorrow with Grandma to stay over the weekend. Katie continues to take her walks around 5th floor with her walker. She is getting stronger each day. Hugs and kisses to you all. Love, Scott and Wendy
Katie had a pretty good day today. She took two steps by herself today when she was doing physical therapy in the playroom. She used her walker and went around 5th floor a couple times without stopping to rest. She loves to play with her babies and cooking toys. When you say your prayers tonight for Katie, please include another little Cameron baby, Aden Cameron-2 weeks old, who is currently in the hospital in Grand Island. May God watch over both of them and heal them quickly. Thank you for all your support and prayers. Its getting
hard being here for so long. We are so grateful that we are
both able to be here together with her, otherwise, I don't
know how we would make it through this. Love you all....
Katie had a CT scan to check her shunt. They then had her do a shunt study to see if it was set right. It wasn't draining enough fluid from her head, so they came in and adjusted it. They think that might be why she was vomiting and not eating like she normally does. Hopefully, they fixed it and it is working okay. We cant start her next round of chemo until Saturday when she is done with her three antibiotics she is on for her infection in her central line. They will probably do the bone marrow biopsy and spinal tap on Friday. We had a student nurse today who is a cancer survivor so it was nice to talk to her. She had a brain tumor when she was 12, so she totally understands what we are going through. Katie is scheduled for another swallow study on Wednesday so hopefully she will be able to start drinking liquids... It looks like we will probably be spending Thanksgiving here in the hospital which is disappointing, but we have to do what we have to do to get her treatments over with. We pray that she will stay in remission after her 5 rounds of chemo. The unknown is the scariest part of this, as we never know what the future will hold for her. After her 5 treatments are over, we will be coming back at least weekly for checkups. Pray for her to stay in remission... Lots of love to all. Please remember to donate blood and platelets.
Katie had a pretty quiet day today. Tyler left today and that was very hard on all of us. Katie loved to play with her big brother. Her blood pressure has been high today so they are calling the resident. She has been throwing up after her meals so we don't know if its from her antibiotics or if she has the flu.... Sundays are pretty quiet around here so not much to report. Talk to you all later.
Katie has been doing well since her surgery on Thursday. The burn on her arm from the IV is starting to peel off so she is sore from that. For having a brain injury from her stroke, she is still so smart and picks up on everything that is taught to her. Tyler came up to stay with us for the weekend. He is taking all this so hard. It breaks our hearts every time we have to tell him goodbye. Hopefully, we will be starting her third round of chemo next week. That cycle is 5 days long. Cant wait for this all to be over. We are very blessed to have the support and love from all our family and friends and the people we have met through this experience. It has definitely given us a new meaning to life. I thought we had worries before, but this takes the cake. Thank you all for your love and for being there for us. Love to all.
Katie finally had her surgery today at 3:30 p.m. They were able to put the shunt in her head and put a central line back in, which means no more pokes. She came out of surgery around 6:45 p.m. and has been getting sick to her tummy. The surgeons said everything went well and they had no problems. Her arm is another story. It looks a lot better than yesterday, but still has blisters and is very red. They want a plastic surgeon to come in and look at her to see if she may possible need a skin graft because the skin is burned. She is still acting like Katie and playing with all her visitors. She is truly our hero and we look up to her because we know we could not endure what she has had to. She is so determined and we believe that is what has got her this far and will get her to the end....Its still hard to believe we are actually here dealing with this, but then reality sets in. Everyday is a gift with her. She is such a joy to be around. Keep the prayers coming..
WOW what a day we had today. Katie's IV
came out of her foot so back we went to the treatment room
to start another IV. The nurse tried several times and could
not find a vein. They called anesthesia and they came in and
put an IV in her arm and wrapped it up so she could not pull
it out. Pray extra hard tonight for her to have a better day tomorrow. Love you all.
Katie has had a lot going on the past couple days when mommy was home in GI to go trick or treating with Tyler. She got a nasty infection in her central line and her blood work kept growing this. The infectious disease guy came in and changed her antibiotics, which she will have to stay on for 2 weeks. The neurosurgeons will be doing a shunt probably sometime this week. They will also be putting in her central line again soon. She has had to get several finger pokes a day to make sure they are giving her the right dose of the antibiotic. She also has to get blood taken from her arm. They usually did this through her central line and since that is out, it has been really hard on her. They have to wait 5 days until they can put it back in. She had a good Halloween with her daddy and they were pretty entertained all day by the staff here. Katie has been such a trooper through all of this. Keep us in your prayers as we will need them this coming week if she gets surgery. Love you all.
|
|
||||
|
Copyright 2006 © - CCOMM - All Rights Reserved |
|||||
