A week of tests.. Day 2

Today was a great day. William and his mother took Katie to get her bone scan today. She did not require anesthesia, which is a good thing because that means that she got to eat lunch. Katie did well with the bone scan. She didn't cry but she did get 'a little' upset (as Katie would say). William says that the only time he really thought she was going to cry was when they went upstairs and the library was closed...but then she got to see the large aquarium and was happy again. Thank you for all of your prayers. Please continue to be in prayer for Thursday and for the surgeon who will be performing the surgery on Monday July 6th.

A week of tests

Yesterday began our week of testing. Monday Katie had a GFR (a kidney function test that tells them how much chemo her body can take). The GFR is easy because they put medication in through her central line and then draw blood out at certain times through her central line. She and William had a good time playing in the library on the 16th floor and looking at the train room (a little bit of grandpa coming out in her!). Today is a little harder...she has a bone scan. She is not particularly fond of the bone scan, CT scan, and MIBG because she has to lay still in a large machine. It is open at both ends and William can be right next to her...but it gets awfully close to her face and body, which of course she does not like. Wednesday will be easy because all she has to do is get an injection through her central line. Thursday is the HARD day. Please be praying for us. William and I will both go with her on Thursday. (I am staying at home Monday -- Wednesday...someone has to work around here! LOL) We have to be at the hospital at 6 a.m. on Thursday morning to drink the contrast for the CT scan. Then we have the CT scan, the MIBG (similar to the bone scan but for soft tissue, like muscles and organs) and a doctor's appointment. We should know how things look after our doctor's appointment. If everything looks good Katie is scheduled for surgery on July 6th. By looking good, I mean that the large tumor on her left adrenal gland has gotten smaller. The surgery on July 6th is a long and very invasive surgery. We have been told that it will be any where from 13 to 24 hours long. Please begin to pray for Katie, us, all our extended family, and of course the surgeon (Jed Nuchtern). Thank you all in advance for your prayers.

Small accomplishments

Yesterday was our last round of the 'nasty oral chemotherapy' medication. Katie was so excited this morning when she did not have to take the medication. She is doing well so far with dealing with everything. We just wanted to say thank you to everyone who is bringing us food, gifts, money, and giving of their time to help us. We love you all so much. We can not express our gratitude to all of you. Thank you for reminding us that we are not going through this alone.

One Long Night

Well...Katie had surgery at 11 last night to put a new central line in. Everything went well with the surgery. In the recovery room I discovered that Katie's 'white blanket'(i.e. security blanket) was missing. As you can imagine I was NOT a happy mother. After some persuading I got our nurse to go and look through ALL the linen bins in the OR...and the blanket was found! Katie was happier and so was I. We got home about 4 this morning and I got a little nap in before I went to work this morning =) Thank you for all your prayers.

Here We Go Agian

Today I got off work early so that I could be home for the home health nurse to change Katie's central line dressing. During the dressing change the nurse cut Katie's central line & we have had to head to Houston. At first we were told if we clamped the central line they could repair it without surgery. However, after looking at the line they stated that surgery was required because the line had been clamped too close to the skin. So as I write we have been told that surgery will be performed tonight & then we can go home. We have been assigned a room on the oncology floor & will be allowed to go there after it has been cleaned. Please pray that the surgeon has had plenty of sleep & knows what he is doing! =) I know accidents happen but I am beginning to get frustrated with so MANY accidents... please pray for my patience, Katie's peace, & comfort for William who is at home & worried about his daughter. Pray as well for the surgeon who is preforming the surgery. Thank you in advance for your prayers.

Great Day

Today has been a good day. We changed up the medicine routine by taking it in the morning instead of the afternoon. For the first time she did NOT throw it up AND it was done in about 15 minutes (instead of the hour to hour and half). Then William, the girls and I went to see Great-Grandma. She made chicken and dumplings from scratch (her speciality) and of course they were delicious. Katie got to spend some time just her and Great-Grandma while William, Laura Beth and I went and did some errands (Katie can't be out in public right now). Great-Grandma and Katie had fun together. Then some ladies from the church (Linda and Sharon) came by to drop off food and spend some time with us. It is always nice to visit with them. Oh and we got a package of books from Ms. Tessa (friend from BVRC). So all in all it has been a great day.

Home Sweet Home

Sorry that I have not posted since leaving the hospital....We did get to leave on Tuesday night. Katie had to take the 'nasty chemo medicine by mouth' before we left the hospital...and she had to take it TWICE because she threw it up the first time. BUT we did get to leave around 6 and got home some time around 9. Since getting home, Katie has been doing pretty good. She hates taking the medicine and it takes alot of coaxing and crying (on both our parts) but we have been able to get it done every night. Other than taking the medicine she has been acting pretty normal. She loves playing with her dolls, fighting with her sister, dancing, singing, and coloring in her coloring books. As for me and William, we are having trouble finding where the time goes! I am working less and driving less (took the job in Madisonville at Riverwood Nursing Home instead of BVRC in Bryan) but it feels like I don't have time to do anything...most of my night is consumed by getting Katie to take her medicine and getting her hooked up to her IV fluids at night. It has been hard emotionally and physically. Keep praying for us to find peace & time to enjoy our girls. You never know how much you miss a routine until it is taken away from you!

The internet FINALLY let me post some pictures from the past several days...

The first one is Katie in her gloves with her doll Suzie...just getting ready to change the doll's central line dressing.


Katie is changing Suzie's dressing.


Katie is laughing and having fun with Suzie.

And here she is just clowning around and having fun in general...

Here is her new trick...riding on the IV pole.

This is a picture of the puppet show we went to in the playroom.



This is Katie with the puppet she made after the puppet show.

Next she is making some glitter glasses!


And here is what Katie looked like AFTER she & my sister made those glitter glasses =)

Going Home

We are going to get to go home today AFTER we take our medicine (the nasty one). Last night Katie threw it up the first time...the second time it took an hour and a half to get it down her. It is about to pull me apart at the seams. To be honest, when I am trying to get her to take the medicine and she is crying and so upset and I am upset and angry for having to do this...it feels like I am taking something from her that I can not give back. It has been a very hard couple of days. Everything else except the medicine routine has not been that bad...we will be home for a week and a half and then back for scans on 4 separate days. Keep us in your prayers. Thank you for everything all of you have done. We appreciate you so much.

Quiet..

The posts are sporadic because there is not much to tell. Basically we are just here for the chemo and nothing else. And... praise be to God because Katie has not had any real problems this time (vomiting or diarrhea). The oral chemo medicine did go down better last night after the nausea medication kicked in and made her sleepy. She doesn't even remember taking the oral chemo! So that is the route I plan to go again today. Hopefully we will get to go home tomorrow....

A day for meltodwns...

Today has been eventful! William, Aunt Karla and Laura Beth came to visit. We had a pretty good visit...however they were here in time for medication and it became a real struggle today! It took us an hour to get her to take about one teaspoon of etoposide (chemotherapy medication taken orally). BUT the good news is that she did finally take it and she got some anti-anxiety medication which has made her ALOT happier. After William, Karla, and Laura Beth left some youth from a local church came by and brought us a prayer blanket. It is soft and pretty...William also brought a beautiful blanket that some ladies from Madisonville quilted for us. So we will be warm tonight!

**I wanted to add some pics from the past couple of days but the computer is being squirly and not letting me...maybe at a later day.

Another Quiet Day...

Thank goodness for quiet days! Everything has been pretty quiet around here. Katie has been in a really good mood. So far, the chemotherapy has not affected her as bad as it did last time. But the reality of it is, she was a lot sicker last time. It gives me hope that this chemo is really working. She took her medication a little better today. We have begun a sticker chart. For now, every sticker she get something for her doll, Suzie. Once we get home we will start to increase it...for every 2 stickers you get something, then every 3 and so on. Some good news is that if she wakes up tomorrow without yucky eyes she can go to the playroom. She is excited about this. All she wants to do is play games that they have down in the playroom....so if any of you would like to get us travel games, have at it (they are easier to lug around with you)...

Also wanted to let everyone know how very much we appreciate all the wonderful things that you have done for us. I can not tell you how overwhelmed (in a good way) we have been by everyone's generosity. People we do not even know are sending us cards, money, and gifts. We are amazed daily by God's wonderful love for us. Because of this we KNOW that He is going to bring Katie through this. I can not imagine life without her...and I just know He has big plans for this little girl.

Quote for the day

Today is going well. Here is the quote for today:

"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot see. God gave his approval to people in days of old because of their faith."
Hebrews 11:1-2 NLT

We are believing that that which we hope for (Katie's complete recovery) will become what we can see!

Back Again

Today, Katie and I (Christa) headed back to Houston for our second round of chemotherapy at TCH. Daddy stayed home with Laura Beth this time. We got to Houston about 9 this morning....after some waiting we now have a room at 3 this afternoon. But to be honest it has been a good day. This morning there was a group of girls who danced some Chinese dances for the kids at the clinic.
Katie LOVED it. She was dancing around while they were dancing & then she got to actually dance WITH the girls. She was so excited. And then she made a dragon out of paper plates. To say the least she was impressed.
After we got to see the nurse practitioner & the doctor, we were put on isolation due to our pink eye. BUT that was okay...a little quiet was good. We played on the computer & read books. We even got free pizza delivered...And the Child Life Specialist gave us a doll with a central line & a kit for pretending to change the central line, taking blood, etc. She has named her Suzie. As I write she is changing Suzie's dressing for the fourth time.

So we are doing pretty good. The plan for right now is chemo through Sunday night, then a day to flush her line out with fluids & go home on Tuesday. Then we should be home for about a week & a half before we have to come back for scans. If the scans look good we will then have surgery to remove the large tumor on her adrenal gland & begin with a third round of chemo.

Another unplanned visit to Houston..one of many

Katie began to have diarrhea on Tuesday and it continued to get worse on Wednesday (20+ times we were running to the potty!). When I called the oncologist they suggested going to our pediatrician. The pediatrician thought Katie was becoming dehydrated and referred us onto TCH because she (the pediatrician) was not comfortable treating her (Katie) because of her complicated diagnosis. So on to Houston I go. We made it there about 6 yesterday. We were in the E.R. for about 4 hours. They gave her fluids, took some blood, and did a stool culture. Basically stuff that could have been done at the Med (at College Station). So to say the least we were frustrated. BUT the good news is that we did get some different pain medication. It is still suppose to be taken by mouth but MAYBE it will taste some better. We got home after midnight this morning, but at least we got to sleep in our own beds. Please keep us in your prayers for finding a pediatrician, in town, that will feel comfortable dealing with the little things that come up. Thank you.

And we are waiting AGAIN

Today William and Karla took Katie to Texas Children's Hospital (TCH) Clinical Care office for a weekly checkup and blood work. As usual there was a lot of waiting involved. (The appointment was at 12:50 p.m.) They were unable to draw back blood from her central line. This is usually caused either by a clot in the line or by the central line moving out of place. They had a chest X-Ray done and the verdict was that there was a clot. So...at 4 they gave her some medication to dissolve the clot. Then they had to wait for 2 hours for the medication to work. At 6 they were unable to draw back as much as they desired but sent them home anyway. Katie has a check-up at her pediatrician on Friday. We will see what happens then...but on a good note all of her blood counts looked good (they were better than her last count at the hospital).

Appreciation

Yesterday, May 31, was the dance recital for Lori's School of Dance. Our daughter, Katelyn, was unable to participate because she is unable to be around large crowds due to her low immune system. At the dance recital, several women got together and set up a benefit for us including a raffle and silent auction. William and I would like to thank everyone who made the benefit for Katelyn a success. Thank you to the mothers from dance class who got donations for the auction. Thank you to those of you who donated items, bid on items, and bought raffle tickets. A special thank you to the women who did all the hard work putting it together: Erica Blakley, Candice Boyd, Lori Hagaman, Lola Hardy, and Vicki Prine. The five of you are very special to us and Katelyn. Words can not express our gratitude. We are truly blessed to have such a wonderful community who has come to our aid when we needed them the most.

Christa & William Connor