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January Updates |
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Katie has been feeling pretty well with this round of chemo. She finally received her blood last night around 10 p.m. which made for a long night for all of us. Her last chemo treatment will be tomorrow morning at 6 a.m., hopefully forever. We wont be coming home until her counts drop and recover, which could be three to four more weeks. The two people who have been the true heroes in this experience have been our two children, Tyler and Katie. Katie has endured more in the last five months than most people have to experience in their entire lives. She has suffered a major stroke and was not expected to recover much, if at all. She has went through countless chemo treatments, had three central lines pulled from her chest, while being totally awake. She has had several surgeries to get the swelling under control in her brain. I could go on and on, but the point is that our little girl has been a true fighter and has taken this nightmare and instead of giving up, she has fought and fought through it all. Each and everyday our Katie wakes up with a smile for us and is ready to start her day, even though its just sitting in a hospital room. Katie keeps her mom and dad inspired and she gives us hope and courage to go through another day. While its exciting that this is almost over, the worst part will be when we go home and have to worry each and every day if the cancer is back or if it will ever come back. Tyler is also a hero because he has been so strong for his family. He makes the car trip to Omaha at least once a week without ever complaining about being bored or how long it was. Tyler puts a smile on his little sisters face every time he walks into the room. He rarely complains about sitting in the hospital room and always seems to find something fun to do with his sister. He voluntarily gave a sample of his blood to see if he was a match for Katie. On Sundays when we drop him off he looks at us with those sad eyes and starts to cry, but never asks why, just how much longer we have to be apart. He has had to grow up faster than we hoped, but I know it has made him stronger and for that we are so proud of him.
We arrived at Clinic at 1 p.m. The doctor checked her out
and they drew her labs. We finally got a room around 4 p.m.
Her hemoglobin was 7.3, so she will be receiving blood here
soon. Usually if it goes below 8.5 she gets blood. Her chemo
will start at 6 p.m. tonight. Her ANC is 160. Katie had
We left the hospital Wednesday around 12:00 p.m. The doctors decided that she would not be receiving the chemo shot because it coagulates (clots) your blood and that would put Katie at risk for possibly having more strokes. They said she is getting the majority of the main chemo drugs she needs, so they are not concerned if she doesn't get this shot. She started to run a temperature of 101.5 around 4:00 p.m. the same day we got out. We called the doctor and the Clinic was still open so they said to come in so they could take cultures of her blood to check for infection. It usually takes 24-48 hours to grow anything, but they think it was just a side effect from the chemo drug she received the last two days. We will be returning Monday for her last two days of
chemo then we stay in the hospital because her counts will
be too low. The neurosurgeon said he would read her MRI scan
and let us know what he thought, so we will talk to him next
week. We will have to come to Clinic at the hospital once a
month for blood work and IVIG, which is a blood product that
she needs once a month.
Well, we arrived at Clinic at 10:00 a.m. on Monday
morning. They drew her labs and we waited until 2:00 p.m. to
get a room. They started her chemo at 4 p.m. and she will
get four doses every 12 hours. She is suppose to get a leg
shot of chemo on day two, however, the doctors are
discussing whether or not she will be getting it because it
can possible cause a stroke because it does something to
your blood. We will know more when they round tomorrow. We
will probably leave on Wednesday and come back the following
Monday for her other two days of chemo. Then we stay here
until her counts drop and she gets a fever. Katie has been
adjusting well to being back in the hospital. I think she is
so use to it that it doesn't even bother here. We will be
getting Tyler tomorrow so he can spend the weekend with us
at Colleens. Thank you to aunt Barb and Jody for remembering
Tyler every week and sending him a gift. That really means
the world to us and Tyler as well. We have been so blessed
to have such wonderful family support.
We are still enjoying life at Colleen's house. We will go back to the hospital on January 23, 2005, for the next round of chemo. We are a little concerned because they say this is the toughest round yet. Katie is doing so good here and even talking more than she usually does. She now says duck and taco.... We want to thank Deb Trosper and Stephanie Lilienthal at Home Federal North for all their help that they have given us. Its not everyday that you consider your banker as your family, but with these two we truly do. You two are wonderful and we appreciate everything. We cant say enough thank yous to everyone who has helped us throughout this experience. Its so amazing how much support we have had throughout this, we can never tell everyone enough how important your support is to us. And to Leslie, my friend, who has been stopping by my house daily to check my mail and pay my bills for me. She has done an amazing job and I truly couldn't do this without her. God Bless ALL of you......
Well we made it Colleen's around 4:30 p.m. on Friday. We were suppose to leave earlier, but her shunt needed adjusted so we had to wait for the neurosurgeon to get out of surgery. Her MRI showed a lot of calcification from her stroke, but that's about all we know because the neurologist never came in and explained it to us before we left. Hopefully, we will find out more when we go back for the next cycle. We had to take a visit to the ER Saturday morning because her central line site keeps bleeding so they wanted the surgeons to take a look at it. After lots of paperwork, bloodwork, x-rays and a dye contrast in her line, they decided they didn't know why it was still bleeding, but told us to keep an eye on it. We were there about three long hours. Katie is very happy to be at Aunt Colleen's house and is getting spoiled as usual. We will update when we have some news. Love you all.
Well, we are being sent home (Colleen's) for a while so she can fully recover before starting her next chemo cycle. You can reach us on our cell phones or at Colleen's house. Then we come back for three more days to do the first part of her cycle and then 5 days later we finish the last two days. We will really miss all the wonderful nurses and care partners sooo much. They have been wonderful to our family and we couldn't have done this without our special nurses. We will update soon.
Katie had an EEG myabout 11:00 am this morning. She did better than we thought she would do. She was awake for this procedure and it took about an hour. After that, she had her MRI done under anesthesia. The MRI took a little longer than expected because of her shunt. When she came up from the test, she had a low blood pressure and temperature, but is fine now. We will hopefully find out the results of the tests tomorrow. Poor girl couldn't eat all day until around 3 p.m. so we kept her entertained in the playroom and avoided any signs of food. Her counts continue to rise and she is producing her own platelets now. Scott, Grandma (Elaine) and I attended the monthly Candlelighters support group for parents with children with cancer. Its such a help to hear other parents who are living your life and going through the same things and talk your medical language.
Katie is scheduled for an MRI tomorrow at 12:45 p.m. She
will be put under for the procedure so she cant eat after 6
a.m. which is not going to be fun when she wakes up in the
morning and cant eat. Her counts went up to 960 today. The
doctor wants to start her chemo next week because she said
Katie needs a break and a chance to get her counts up before
her next and LAST cycle. The drug is Cytarabine, which she
has been getting before, but this is much stronger this
time. She will have chemo on day 1, 2, 8 and 9. On day 2 and
9 she will get a shot of chemo in her leg or arm. I want to
thank everyone who was been helping with our "moneypit" of a
house. We truly don't know what we would do without all your
help. Thank you...
Katie's ANC is up to 700 today. The doctors want her to be on antibiotics for another 5 days so it looks like her chemo will be pushed back to next week. Her left eye has not been blinking so we had the neurologist come look at her and he ordered her to have an MRI to check her brain status. They also want the eye doctor to come back and recheck her as well as the neurosurgeon to make sure the brain levels are okay. Her central line is still leaking blood so it has to be changed all the time, which makes for an unhappy little girl. We are trying to get things in order for future care with the doctors because when we leave here we will need to know what specialists we need to see and how to follow up with care for her stroke. Thanks again to everyone who has been supporting us. It has been a very stressful and hard time for us and I think each day here gets harder and harder. We are so ready to be done with this, but the reality is it will never be done, just hope someday it gets easier.
Katie's ANC is over 600, but still she has to have her antibiotics for 5 more days. Katie has been such a trooper through all of this. Hopefully we can start the 5th round next week. I would to thank everyone who has helped our Katie girl
with all of the love, prayers, gift donations, and the
people who tell other people about her. AND to my wife who
in the first hours of finding out that Katie had a mass in
her tummy, that said: I cant do this! LOOK at you now,
you've come so far and helped me and other families like
ours. I love you. You are my best friend and supporter. I
cant imagine going through this with anyone else.
Not much new here today. Her ANC is slowly climbing and is now 345. She received some blood today and she had no reaction to it this time. She has had a cough at night when she is sleeping, but they all say her lungs sound clear so they are giving her Donatussin and they think its just a virus. We went to the playroom again today. She really loves to play with the dishes and fake food. Her other love is the Kleenex box. She managed to take out every single Kleenex and stuff each one down her shirt. Katie can have fun in any environment you put her in.
Katie had an okay day today. She is having problems with her central line. When the nurse flushes her meds through, she can feel it going in her chest and she screams every time. They did an x-ray this morning to see if the placement was right and it looks like it is so they are puzzled as to why she can feel pain. Her counts are 325 today. She will be getting some blood tomorrow since her hemoglobin is around 9 today. The nurses and care partners here have been taking such good care of us and our girl. They go out of their way to make sure we have everything we need. We are sometimes difficult as they call us "experienced hospital parents" so we know what we can have and how things go. I am glad they are all use to us by now and know we only want what's best for our Katie.
Katie had her surgery at 8 a.m. this morning and everything went well. She was a little sore so they gave her morphine which really seems to help her with the pain. She has been eating better than she has in days, which is good because she is loosing so much weight. Her ANC is 288 today and her platelets are very high, which is a good thing. I want to say thank you to my parents for taking such good care of our Tyler. We truly don't know what we would do without them. He is very happy there and well taken care of. They are teaching him lots of new things that we cant right now since we are not with him. They are also here in a moments notice when Katie is not doing so well. Thanks mom and dad. You are our hero's and special angels. We miss all our friends and family sooo much. Life goes on for everyone, but when you are here in the
hospital, our life seems to stand still. Cant wait to get
back home. We hope someday we can give back something to
everyone who has helped us. We are so blessed...
Katie's IV in her foot finally went bad today so they had to put one in her arm. They actually got on it in on the first try which is really unusual since she is very hard to get an IV in. She is scheduled for surgery tomorrow at 8 a.m. to get
her line put back in. She had to get platelets today again
for the third time in a week. They ran them slower so she
didn't have a reaction, but her temperature did go to above
100.0. Her counts are up to 160 today. The surgeons would
like to see them a little higher before a surgery, but they
are going to do it anyway, which means no more morning
finger pokes for Katie.
Not much new to report today. Katie has been very agitated today and nothing seems to make her happy. Her ANC is at 60 today so they are hoping they can do the line on Friday. Katie woke up last night about 1 a.m. and threw up. Not sure why, but that was the last time she did it. Thanks again to everyone for their love and support.
Katie had been feeling a little bit better today. She hasn't had a fever until recently it is at 99.3 so they will monitor it throughout the night and take blood cultures if it goes above 100.4. She has an ANC now of 40 and the doctor would like it to be above 500 before they do surgery for the central line so I guess we wait longer. She has definitely been more irritable since she started this new antibiotic and one of the side effects is fits, but we are not sure what's causing her to act that way since she really doesn't communicate very well. She did get to go into the playroom for a while today. We haven't been able to take her from the room since we got her last week because she was in protective precautions with her fever and loose stools. She also went on a wagon ride with her brother, which she really enjoyed.
Katie has not had a fever all day. Infectious Disease said she will be on her antibiotics until her ANC is higher than 500 for more than three days in a row. They are talking about putting her new central line back in on Wednesday. She received her IVIG today and had a reaction to it and started shaking really bad. They stopped it and started it over an hour later and they will run it slower. IVIG is a blood product that she needs once a month, but I am not sure the reason for it. We still have Tyler with us and he doesn't go back to school until Thursday. He will be sad to go but I keep telling him this is almost over and we will live together as a family really soon.
Katie has not been herself lately due to her infection and high temperatures. It seems all she wants to do is sleep or lay on me. She got hives from her new antibiotic yesterday so they have to give her benedryl all the time to prevent this. She has not had any fevers today and seems to have more energy than she has all week. She received platelets today because they were down to 30. Her ANC is still 0, but her white blood cells are slowly coming up. The doctor said this e coli she has is very sensitive so I think that's why she is having such a hard time kicking it. We hope her line can come back in this week so they don't have to wake her up every morning at 6:30 a.m. to poke her finger. Hope this year is better than the last, however, we do have a lot to be grateful for. Love you all.
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