Good News...sort of

The doctors came in to let us know the results of the CT scan. The spot in her pelvis is soft tissue located in the space in between the back wall of her pelvis and other organs. It is not on or pushing on any organ. The is also a spot of disease in the left lower lobe of her lungs about 6 millimeters. The good news is that she does NOT have any lesions on her skull. They thought that the MIBG scan was probably picking up growing skull bones or recovering tissue from previous lesions. Right now the plan is the chemotherapy in the outpatient setting next week (and maybe radiation). Also we are planning on going home tomorrow as long as she doesn't have any fever and there is no growth in the culture they took of her port-a-cath. From what the surgeon who took out the port-a-cath said, there wasn't really an infection. It was more because it was not healing right. There was a lot of space when he took out the port so they put packing in. This packing has to come out but hopefully we will be able to deal with this at home without much problems. Thank you again for your prayers.

Prayer request for today: No growth in the cultures taken so that we can go home tomorrow AND that taking the packing out goes smoothly.

Thank you for your prayers and support!

Also please continue to pray for the Hahn family (William's brother-in-law (Keith)'s mom & dad). His dad is currently in the ER about something related to his heard (we think) His mother is doing better but it looks like they are going to amputate both her feet and part of both ring fingers. I know Keith would appreciate your prayers.

Deja Vu

Katie's had complained of her port hurting yesterday (she has been doing it for several days but it looked okay). But when I looked at it last night it was swollen and draining a yellowish fluid with blood mixed in. We put a call into TCH and then headed that way. We arrived at the ER at 11 last night, got a room on the 9th floor at 6 this morning and had the port removed about noon today. The doctor removing the port stated that there was a lot of space inside so he packed it. The packing will have to be removed in a couple of days. We will be in the hospital for these days. We are hoping to get the CT scan while we are here. Also, the pediatrician called to say that nothing grew in her urine culture. Ironically she thought that she was telling us good news but in reality this probably means that the tumor is indeed soft tissue and that it is pressing on her bladder or other part of this system. On a good note, I was proud of William who made sure that they didn't give Katie an IV before knocking her out with gas BUT he did it nicely and got the job done without making anyone mad. I, on the other hand, got pretty upset when they took us to the surgery 'holding' area to be prepped for surgery and then TWO hours went by before anyone came in to talk to us or get her ready. Right now William is getting a little nap (he may head home tonight) and Katie is sitting in bed with her legs crossed while eating her McDonald's kid's meal.

***Prayer request for today: That we are able to get the CT scan done today or tomorrow...and maybe start the next round of chemo. Thanks.

Life is all about how you handle Plan B...

Dr. Russell called this morning. (The nurse called early this morning to let me know that there had been a computer glitch on Friday and they were unable to view the scans on the computer...and since no one could read the scan no one called me.) At any rate....Katie has two new spots of cancer and the previous seen spots have gotten bigger. SO...we are now switching to a different chemotherapy that has an oral and an IV component. We will stay in Houston all next week and Katie will get the chemo Monday-Friday. Also one of the spots on her pelvis looks like it may be soft tissue...so they are going to do a CT scan to find out. IF it is soft tissue then we will do radiation again...As you can imagine we have been knocked off kilter again! It is even harder as we near our one year diagnosis anniversary (May 14th). Please continue to pray for us. We truly are falling apart...the words from a christian song come to mind "Please don't fight these hands that are holding you" I feel as though God is there and holding us in his hands but we are fighting all the way. I don't understand His plan...and I desperately want to make some sense out of all this...again we can really use your prayers now... Thanks...

SIDE NOTE: Katie has a UTI (urinary tract infection) and is having a really hard time with it AND her port is still draining....that means an IV for the chemo next week...yeah! =(

Scan...

Katelyn did well with the IV that they had to do to inject her with the contrast for her MIBG scan (They did not use her port due to the infection that she had last week). The next day was the scan...she was able to do it without sedation but it was very difficult for her. The entire sheet was soaked from her sweat at the end of the test (of course they do wrap her up with like a mummy to assist with keeping her still). Dr. Russell was suppose to call me with the results yesterday (May 7th) but I did not hear anything...I called and left messages 4 or 5 times. From what I saw it looked like the cancer spots on her fibula, posterior pelvis and skull were some bigger. I didn't see any on her femurs (there were some there last time) but I did see that both of her hips lit up. I am not sure if that is due to growth spots like her knees or not. I can't remember what it looked like last time on her hips. In other news...Katie is doing pretty good. She is having some difficulty with diarrhea and a painful bottom. Hopefully we can get it resolved soon. Laura Beth has a cold but is running around acting fine. Thank you for your prayers and support. We appreciate it so much.

Happy Mother's Day to everyone!

Newspaper Article

A friend found the link to the newspaper article....I am lucky to have friends that are more computer literate than me! =) (Thanks Bonnie!)

The link is

http://www.madisonvillemeteor.com/articles/2010/04/29/lifestyles/life05042810.txt

Port Infection & Newspaper Article

We took Katelyn in to see the pediatrician today. He prescribed some medicine and will see us again on Monday to keep an eye on the infection. It was looking much better and not draining as much. Thank you for all the prayers.

Also I hope everyone got to see our article and picture in the paper. Katie was excited to see her picture in the paper. Unfortunately, when the author was talking about monetary support given to us, she forgot to mention all the help we received from Lori's School of Dance Recital fundraiser, all the churches in the area, and money raised for us by individuals such as Erin Richie, Becky Ware, several quilting guilds, and numerous others who have donated to our benefit fund. Many of you we don't even know your name but we are so thankful for your generous hearts.

Have a wonderful weekend!

Infection

Yesterday while changing Katie's clothes, I noticed that incision above her port was red and oozing. I cleaned it and put medicine and a band-aid on it. Today it still looked no better so I called TCH. They gave me some instructions on what to do and referred me to our pediatrician. We have an appointment tomorrow. We are packed and ready to go to TCH if needed...please pray that it is not needed. Her immunity (as measured by the blood counts this week) is doing about normal so we are hoping that her body can fight this off. Thank you for your continued prayers and checking in on how things are going.

Update

Just wanted to let everyone know that Katie's MIBG scan has been rescheduled for May 6th with injection on May 5th. The machine that they use to do the scan was broken. Thank you for your continued prayers. Everyone is doing good here.

Our garden is doing good...Katie is so excited to tell everyone that she has a bell pepper the size of BOTH of her thumbs! Here is a picture of it.

Our Amazing God!

Katie, Laura Beth, William, & I have been having pretty good days lately. Life seems to be getting back into a 'normal' swing of things. Of course, that all has the potential to change with scans next week. I ask you to pray extra hard for Katie and for us. Next week on Wednesday we have to go to Houston to get the medicine put in for her MIBG scan. This will be the first time that her port has been accessed since putting it in. I am a little nervous about how she will do with this. The area around her port is still very tender and they have to put a needle in it to access it. Then on Thursday she has her MIBG scan and we meet with Dr. Russell. Hopefully we will get to see the preliminary results of the scan at this doctor's visit. Katie's blood counts have been good the past week or so and I hope that is a good sign. Part of me wants to say that she is better and the cancer is going away but the 'cancer mom' in me knows that Neuroblastoma is a tough one to beat. I am having faith in God that He is taking care of it all. Today we had a tornado warning...as I stood outside looking up at the clouds rolling around I was awestruck! It is amazing to me that God can make the clouds move so fast and twist and swirl. It looked like someone pulling cotton candy apart and moving it around. And the colors were amazing! I don't think I had ever heard rumbling like this...it wasn't really thunder but just the sound of everything moving around. (No worries there was no tornado touchdown near us.) And I thought, 'if God can do amazing things like that I KNOW He can cure Katie.' I just pray that it is here on earth where I can enjoy her in the here and now. Thank you all for your prayers.

***I also would like to say a big thank you to Carrie Rose's Relay for Life team. They have been wonderful! The food that they have been selling to raise money for their team is delicious. They also got in touch with the Madisonville Meteor, who will be doing a story about Katie. Watch for it in the paper in the upcoming week or so. Thank you to everyone participating in the Relay for Life!

Good Days & Garden Blooms

Katie has had a good week. The girls went to daycare all week (Katie just went Wed-Friday). Yesterday neither William and I worked BUT we sent the girls to Granny's anyway. William worked out at the gym with a friend and then worked on his truck. And I went to eat lunch with some great friends! Katie had a fun time with Kate and Zoey! Her words were, "I had a great time with my 2 best friends!" Then last night we went to watch Nicholas play baseball. Thank goodness for people who bring their puppies to the game! The girls were entertained and had a wonderful time. (Big thanks to Tammy who kept up with our little monkey aka Laura Beth!)

AND our garden is growing! Katie is so excited! She loves to go out and look at it with her dad. (I am allowed to come but she said that daddy and her are the ones who take care of it! LOL) We even have our first bloom! And tons of the seeds (green beans, carrots, and pumpkins) have little shoots coming up!

Here is a picture of our first bloom!

A Port!

Today Katelyn had her central line removed and a port put in. We did this because with a port she can take a bath and swim (with a central line she cannot do these things). It was a VERY long day. For a procedure that was suppose to take 45 minutes, we were there 7 hours! And they wonder why my husband becomes frustrated and loses his cool. Other than being sore and tired she is doing okay.

**A funny side note: Today, Katelyn was playing with some boys in the waiting room. She came to me upset because they were calling her a boy. I told her to let them know that she was NOT a boy but instead had cancer and her hair fell out. A little later I hear my precious girl yelling at some boys, "I am too a girl! I have cancer and my hair fell out because of the chemo." A little later she came around the corner riding in a car that one of the boys was pushing! I couldn't help but laugh.

The Girls

Here are some pictures that Erica Blakely took of the girls for me. They are wonderful! Erica is truly a blessing to us.

Garden Time

I hope that everyone has been outside enjoying the wonderful weather & the beautiful wildflowers in bloom! Today was a beautiful day...so we decided to start our garden. I know it is a little late but we are hoping that it will do good anyway. Katelyn loves plants & vegetables & she has been wanting a garden for a while. We tried to do one in large buckets last year but when she was diagnosed last May all of that got forgotten. This year we went all out & made a REAL garden. Katelyn & Laura Beth were so excited. Here are some pictures from today.

Helping Out


Strong Woman! (Those tea jugs are full of fertilizer!)

Grandpa tilling up the ground & William watching it happen!

Gotta Love that Smile!

Inspecting the grounds

Teamwork!

Planting Away

Working Hard!

Farmer Girl!

Happy Easter!

I hope that all of you had a wonderful day. Our family had a peaceful Easter. I am grateful that my family and I serve a RISEN Savior. I do not understand why He does the things that He does most of the time BUT I do know that Jesus came to this earth to die for us because of our sins and that on the 3rd day He rose again. He has conquered death that we may live eternally with Him! For this I am thankful. It gives me some peace to know that even if God takes my daughter from me earlier than I would like that someday I will see her again. Of course that does NOT mean that I am giving up keeping her for as long as He will let me. I can't imagine life without BOTH of my girls. They are precious gifts from God.

But on to our Easter activities.... Last night Katie and I attempted to make Easter Cookies (basically divinity but they are suppose to rise overnight and have a hollow center to represent the empty tomb on Easter morning...unfortunately ours did not but they still tasted good). I felt so fortunate to be able to share with my daughter the meaning of Easter. It was a precious moment for us.

Yesterday we also were able to go to my parent's house for an Easter egg hunt at their church and spend the day with them. Katie and Laura Beth had a blast! Then today Katie sung "Jesus loves me" all by herself for the congregation. Unfortunately it was an impromptu thing and I wasn't able to get a video of it. (Hopefully next time it can be planned). Then they enjoyed time in Sunday School. The afternoon was spent with William's family. The girls always love to spend time with their cousins. They had fun hunting Easter eggs, playing outside, and taking pictures in the bluebonnets. All in all it was a wonderful Easter. I pray that yours was wonderful for you.

Here are some pictures from the day:

All the Connor grandchildren

Katie in the bluebonnets

Laura Beth

Laura Beth after her egg hunt today

Misery...

Just a quick note...Katie has had a very rough couple of days. And of course that means that William & I have had bad days as well. She is constantly tired and having HUGE meltdowns. She is very hyper and will not take a nap and then she is tired the rest of the day. We are at our wits end. And what scares me even more is that this is how she acted right before she got diagnosed.

She has taken 3 doses of her medication now and is doing fairly good with it. She hasn't been nauseous or anything. But she is beginning to lose her hair again. This is upsetting to her but hopefully it means that the drug is doing what it is suppose to.

Thank you for your prayers.

Yummy...

I just wanted to write a quick note of thanks to some wonderful people. Tonight our dinner was provided by Undercover Angels from FBC Madisonville. They were doing a fundraiser for Relay for Life. They provided us with King Ranch Chicken, dinner rolls, and salad. Our meal was donated to us but others paid/donated to receive theirs. It was a WONDERFUL meal. I appreciate what you guys are doing both for the American Cancer Society: Relay for Life and for us!

Also an update on Katie: She took her first dose of the oral chemotherapy pill today. She did great! No fuss or anything. And from the faces she made, I know it tasted very bitter. She had a fun day. She ate lunch with me and 6 of my friends...she was the life of the party! And then played at Granny's with Kate (again my apologies to Granny...we must have had her inside voice removed at birth by accident!). And then she got to enjoy dance class!

***Please continue to pray for Keith's mother. She is still in ICU. She has is in very critical condition and has only been given a 4% chance of survival. Please pray for the Hahn family.

News...

Katie and I have been up since 4! And we have been at TCH since 7. Amazingly we are in okay moods...a miracle in and of itself. =0)

Katie did NOT make counts today. Therefore, she can NOT participate in the study in Cincinnati. I am sad...and strangely so is Katie. I think is is just that neither of us like change. We are a little autistic in that way! **wink**

I have talked with Dr. Russell this morning. She said that due to Katelyn's low platelet count she is currently NOT able to participate in any clinical trial. William and I have chosen to do oral cyclophosphamide. It is an oral medication that can be crushed and put in food. She takes it every day. We will be able to remove her central line and put a port in. She will have scans again in 4 weeks. Please pray that this works. We picked this medication out of our 2 options because Dr. Russell said that it was safer and because it was 1 oral medication instead of 2.

***Please pray for the following people:
1. Dakota (a family from church's granddaughter): she is in TCH due to low iron levels. They are not sure what is causing these low levels.
2. Audrianna: another little girl who has neuroblastoma. Their story is very similar to ours. Her MIBG came back with spots in her liver. They are waiting to find out what this means for them.
3. Keith Hahn's mother: she is in ICU due to an infection and requiring a ventilator.

Thank you for all of your prayers....we appreciate them so much.

More Bad News

Katie did not make counts today so they did not collect her stem cells. We will try again on Monday. If she does not make counts, then we will give up and NOT be able to do the MIBG study in Cincinnati. Additional bad news...Her MIBG scan from yesterday came back with 2-3 more spots of cancer. Dr. Russell is going to look into options for us and we are going to regroup on Monday. Please pray for peace and discernment. Right now I just feel very empty and so far away from God. I actually sat down in the middle of the hall at TCH and cried today. Katie joined right in...what a sight to see for the doctors that got out of the elevator about that time!
Again thank you for your encouragement and prayers. We defiantly need it right now. The bright side is that Katie is feeling great and having a good time. We are looking forward to going to a birthday party tomorrow and just lounging around the house.

Coming Apart at the Seams...

This week has been VERY stressful for me. It could be that I had to be at TCH at 7 on Monday, Wed, & Friday (tomorrow). Or it could be that after I called and asked the nurses about 5 times to make sure that Katie didn't need any other type of test...and on Wednesday, they decided that she did indeed need a CT and a bone marrow biopsy THIS week! Or it could be that today we had to got to the 20th floor of the hospital to get an echo, 14th floor of the clinic to see the nurse practitioner, and then back to the hospital for her MIBG all in a 2 hour time span. OR it could be that on Tues night Katie woke up FIVE times crying for no apparent reason. OR IT COULD BE ALL OF THE ABOVE! =0(

Anyway this week has been stressful for me...to say that I am beyond exhaustion is an understatement. Maybe that is why I freaked out while Katie was getting her MIBG. I was looking at the scans and seeing a large mass in her abdomen. I kept telling myself that it is just her liver but none the less I was terrified. SO I went straight back to the clinic to see Dr. Russell and have her look at the scan. (No appointment or anything!) The scan never did come up in the system BUT Dr. Russell did come in to talk with me. We looked at her last MIBG scan to see if I saw something that was normal...and we are pretty sure that what I saw was normal uptake of the liver. Thank you GOD.

Tomorrow, we go once again to check her stem cell level. If she is not at the right level to collect, the doctor may decide that it is time to give up on getting stem cells. Without stem cells we can not participate in the MIBG study in Cincinnati. I am praying for God's will to be done in this situation and that whatever is best for her (that will heal Katie), will happen. Please join me in this prayer. Thank you for your kind words and loving support through prayer!

Pictures

If you would like to see some pictures of the girls please go to
http://wipingbuttsandcleaningup.blogspot.com

This is Erica Blakely's blog. Her daughter and Katie are the best of friends. Zoey, Kate, and Katie are the 3 musketeers! Erica is a wonderful mom and a GREAT photographer. We are grateful to have such wonderful friends.

Yesterday, Katie went to daycare at Granny's. She had a blast! Kate came over and they caught up for lost time. Granny said that during nap time the girls were talking, laughing, and wiggling around. I think they overwhelmed Granny's ears! LOL I am so glad that they got to have a great time.

Continued Waiting...

Katie & I spent the night in the Ronald McDonald house last night. When I attempted to get her up this morning at 6:30 she responded that she had not slept at it was NOT morning time yet. I explained that even though it was dark outside, that it was time to get up. Her response? "Prove it is morning time!" And then she rolled over and tried to go back to sleep! =)

We did get up though & are spending the day at TCH. Katie is NOT at the level to be collected for stem cells but she needed blood and platelets...so we are having to stay for that. And for some reason it is taking FOREVER to get blood products. So we have been here since 7:30 & now at 11:15 we are just about halfway through with platelets....good thing is that I have time to get through a portion of my at home continuing education class...bad news is that I am bored! LOL

We have to be back on Wednesday & then we have her MIBG scan on Thursday. Please continue to pray for the following:
1. Peace & patience for William & I.
2. Katie to have to right level so that we can collect stem cells.
3. Katie to have enough stem cells collected that she can participate in the MIBG study.
4. Katie & I to have traveling grace on the way to Cincinnati & that we can remain calm during the entire trip & time there.
5. Katie to have the same or fewer/smaller spots of disease according to the MIBG on Thursday.
6. That Katie handles the time in the hospital at Cincinnati okay. She can NOT take her favorite blanket or doll with her because if it became radioactive she would not be able to take it home.
7. Pray for Laura Beth...she is beginning to understand that mommy is gone and doesn't like it. She is so little to have to deal with all of this and doesn't understand why mom and sister are gone sometimes for weeks at a time.

Thank you for all of your prayers and support. It means a lot to us.

***There is a blood drive at the high school in Normangee tomorrow (3/23/2010)from 8-2. This blood drive is in honor of Katelyn. Please go & give if you can. I can't tell you how many times that Katelyn's life has been saved by getting blood products! Thanks.***

Waiting...

William, Laura Beth, Katelyn and I headed out the door this morning at FOUR a.m. We got blood work done. Katelyn is still not at the right level for collection. She did need platelets though...so we got those. We have to go back on Monday to monitor her level. We did find out though that she does NOT have hepatitis B. So that is good news. We are enjoying the beautiful day...hope that you are too!

Life in the fast lane

Sorry that I have not posted in a while. Life has been going pretty good for us. I have been wanting to post but just haven't had the words to say...

Anyway....Katie and I headed to Houston for blood work today. Katie had to get blood and platelets today. Poor Katie has a bruise the size of a quarter on one of her legs from where I gave her the GCSF shot last night...(of course it is no wonder since her platelets were 8 and they transfuse at 20 & below). There is a little glitch in the road...Katie's blood work came back positive for hepatitis B core antibodies. This usually means that you have an active hepatitis B infection. IF that ends up being true we will not be able to participate in the MIBG study in Ohio. HOWEVER, this has happened before. When we were at St. Jude's the same thing came up in her blood work and it ended up being nothing. I am praying for direction...and for God to just take care of the situation.

But at any rate...we are doing good. Katie is feeling good and enjoyed getting to go to daycare and dance class this week.

Thanks for your prayers...we will keep you updated on the situation

Sadness

Please pray for The Marsh family. Layla passed away this morning. She is in peace now but the family she left behind is hurting. She was a beautiful little girl with blue eyes and a quick smile. She will be missed not only by her family but all that knew her.

Week of Chemotherapy Day 2

Day 1 went well. Katie felt kind of sick right after chemotherapy was finished. Other than that she did not have any problems. She was very hyper last night and had a ton of fun with her sister...Welcome to having a preschooler and a toddler! =0) Please continue to pray for us to collect enough stem cells. The tentative date for collection is March 18th. Pray for us, also, as we begin to prepare Katie for everything that will take place in Cincinnati. Thanks!!!

A Week of Outpatient Chemotherapy

Katelyn and I got up early this morning and headed to Houston. For several reasons we were running late...we got here about an hour late...I was so frustrated! But we are back in the infusion room now and things are going smoothly. Katie is hooked up to fluids and the chemo orders are turned in (from what I understand they can not make it up till we get here...it is expensive stuff and has a shelf life...) She is playing and I am surfing the web...all is good. Thank you for all of your prayers and thoughts.

Going Home

We are going home today! Of course we will be back on Monday for outpatient chemotherapy in preparation for stem cell collection and then off to Cincinnati OH for MIBG therapy. Thank you for all of your prayers...we are in a really good place as far as emotions go...

***Please continue to pray for Layla. She is still hanging in there but it is very difficult for her and for her parents & 2 sisters.***

Decision...Made!

We have decided to do the MIBG therapy. Please pray that Katie can get enough stem cells collected to allow us to go on the study. Thanks.

Choices....Choices...

Today we spoke with Dr. Russell about our options for the next course of treatment (at this time). Basically we have 2 choices: IGF (an antibiody therapy) or MIBG Therapy (a type of radiation). Really there is no data that says one is better than the other. BUT we do have to decide by tomorrow! The IGF seems like the easier option because it is an infusion that is once a week without any type of oral medication. If this treatment keeps the disease stable or reduces it then we can stay on this regimen for up to 2 years. This would be done in Houston. Our second option is the MIBG therapy that is done in Ohio. It is a one time deal. It will make her radioactive for 2-3 days which means that I can NOT be in the room with her. She will have to have outpatient chemo first, then stem cell collection, then MIBG therapy, and then about 2 weeks of oral chemo. Just at first glance it seems the IGF will be easier but it really is a toss up! So please keep us in your prayers for discernment.....thanks!

AWESOME news!!!

During rounds today, the attending doctor told us that Katie's bone marrow biopsy and aspiration came back negative for cancer!!!!! We are beyond excited. Hopefully we will get to meet with Dr. Russell later today and make a plan for our next course of action. Thank you all for your prayers...they are working! Katie had a rough morning but is doing really good now. IF (and that is a big IF) she does not have fever for 24 hours AND her cultures come back negative for 24 hours we may be able to go home soon. AGAIN thank you for all of your prayers. I know sometimes it may not feel like you are doing much when you pray BUT it is the most important thing you can do for us! "But little is MUCH when GOD is in it!"

Ambulance Ride

Last night Katie spiked a fever of 102.7. TCH said that we could go to a local ER first so we headed to Madisonville. At the ER her fever went up to 104; her heart rate was high (160); her blood pressure was kind of low (76/35). At about one in the morning they decided to send her on her first ambulance ride. She was in good spirits and so was William. They spent the night in the ER and I went home to get our bags packed. This morning I headed to Houston. Katie's temperature has done better and her blood pressure is within normal range BUT her heart rate continues to be high. Therefore they are going to admit her to the hospital as a precaution and have started her on antibiotics. We will be admitted to room 908 within the next hour or so. Thanks for your prayers.

Craziness

The other night when I found out about Layla, I had been planning to blog about our fantastic trip to the aquarium in Houston. So here is that blog...

Katie, Laura Beth, William & I headed to Houston on Sunday to spend the night at a motel before getting Katie's bone marrow biopsy on early Monday morning. We left after church on Sunday so we had time to do something fun before going to bed. Katie LOVES fish and anything to do with the ocean so we decided to find out where the Houston Aquarium is located. And let me tell you....it is not an easy place to find! But we did find it...eventually...and both girls loved it! We had a blast. The following is my FAVORITE picture from that night:

Katie has had a really good couple of weeks. If you saw her & did not know better you would think that nothing was wrong with her. However, today she has not had the best day. She & her daddy spent the day together. They had a good morning/early afternoon BUT after her nap she was very cranky & whined a lot. She felt warm but not too bad. We are attributing it to having her bone marrow procedure yesterday & having had too much activity in the morning time. Please pray that nothing is wrong with her...NONE of us want to head to TCH! Thank you for your prayers for us & for Layla. From what I can tell off of the blog/twitter it looks like Layla is still hanging in there. When I think of what the Marsh family is going through & how HEAVEN FORBID that could be us in the future I am deeply saddened both for them & us. Please pray for us to be prepared for what God has in store for us & for a miracle to happen! Thank you for your prayers.

Urgent Prayer Request!

Please pray for Layla. She is dying and it is very painful for her. Layla was diagnosised a week before us.

Her blog is laylagrace.org

Bad News

Katie had a bad ear infection on Thursday and therefore could not tolerate doing the MIBG scan without sedation. The good news is that Dr. Russell gave her a dose of medication and it took care of it. She was back to her old self by the next day (today). The bad news is that Katie's MIBG scan showed about 8 spots of disease. This means that the cancer has come back and not gone away as we had hoped. These spots are new. Dr. Russell is going to look into all our options and we will meet again next Thursday. We are just trying to enjoy the time that we have with our girls and not focus on what may be coming. Please pray for us.

Week of Scans: Day 3

Today Katie had the CT scan. She did great! She drank the contrast (all 3 cups) without any fuss or problem. She laid perfectly still for the actual scan. No meltdowns at all! Without any fuss at all she also took the pre-medication for her scan that is tomorrow. (It is a not so nice tasting oral solution). I was so proud of her making it through all day without any problems. Thank you so much for all of your prayers. I know that they worked. Tomorrow we are headed back to Houston for her MIBG scan and to meet with Dr. Russell. Please be in prayer. Tomorrow's scan is a very difficult one for Katie and I know that your prayers will help. Thanks!

Week of Scans: Day 2

Yesterday was an easy day. They did a kidney function test...they put medicine in through her line and then do 3 blood draws through her line. It just takes forever...the draws are 1-2 hours apart. But we found ways to fill our time and did okay. Then we spent the night in Houston due to the snow. William thought it might not be a good idea to drive home in the snow and then driver back to Houston to be here at 8:30. We went to bed at 7!!!!!! It was amazing. Of course we were up at 5:30 because Katie just wasn't tired anymore! =) Well we are off to the CT scan and getting the injection for the LONG test that is tomorrow. (She has to lay still for an entire hour...part of that time the machine is really close to her face...not her favorite test so PLEASE keep us in your prayers.) Thanks.

***Update: My mom is doing good. They did several tests and found everything to be pretty much normal. They are thinking that two of the medicines that she was taking might have had a reaction and caused her problems. Thanks for all of your prayers.***

Week of Scans: Day 1

Katie had her central line put back in today. (This makes her FOURTH central line in less than a year!) We stayed in a hotel last night so that she could go swimming. She loved it! The pool was indoors but was still cold BUT they had a hot tub that was only warm so that worked just fine. Surgery was on time and everything went well. She was upset when we got back to the recovery room but it was manageable. We are back home now and just trying to let the effects of the anesthesia wear off. Tomorrow we have to be back at 8 in the morning for a kidney function test (they do this before most rounds of chemo &/or immunotherapy). Then on Wednesday she has her CT scans. Thursday she has her MIBG (similar to a CT scan but looks more closely at the soft tissue.) Please continue to keep us in your prayers. We are praising God that we had a month off from the central line and that we got to have a little bit of normalcy back....it was so good to see my 4 year old acting like herself again...and it is so hard to feel that normal little girl may soon become the crazy little girl that TCH makes her...

Excerpts from a Wonderful Day!

Today was a beautiful, wonderful, AWESOME day! Everyone was in a great mood and had a good day at work/daycare. The day was busy & a bit crazy but fun. The following are some fun excerpts from the day....

***Katie and I were discussing her having tests next week and here is what was said:
Katie: "When do I have to go back to the hospital? I mean Texas' Children's!"
Me: "Next week. You have to get your line back in and do tests."
Katie: "What tests?"
Me: "The one with the moon and stars and the one that you have to lay really still for."
Katie: "The one where you and the nurses stand on one side and daddy stand on the other?"
Me: "Yes"
Katie: "And daddy holds my hands and says 'Hey Turkey'. I love it when he calls me TURKEY!!"
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***The following conversation proves that William and I have lost it!
Me: "Don't forget to tell your boss you have a doctor's appointment tomorrow."
William: "What time?"
Me: "8:10" (Looking at my appointment book!)
William: "I thought my appointment was Thursday?"
Me: "Let me look....oh yeah it is Thursday not tomorrow."
A little bit later in the conversation....
William: "If you are taking Katie to dance class, what am I going to do with the baby while I work on the truck?"
Me: "Leave her with your mother I guess."
William: "But they have church tonight."
Me: "No they don't...it is Tuesday! I thought we already established that!" LOL
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Later Laura Beth drank some Jones Soda that grandma gave her and began to twirl around the room saying "whoa!!!!!!!!!" Then she would stop for a second catch her balance or fall down...and then get back up and start twirling again!
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Have a great wonderful day! =)

Sweet Home NORMANGEE

Please forgive me for not posting since we have been home....I just haven't had the time or been in the mood to write lately. Katie and I came home on January 31st. She has been going to daycare about 75% of the time (the rest of the time she is staying home with one of us or grandma so that she can rest). She has also gone to dance class twice! You can imagine that she is one happy camper. She does NOT like to get her finger stuck (Poor Aunt Karla has to be the bad guy! BUT we do love her so much! God truly knew what he was doing when he sent her to nursing school...He plans so well!) BUT Katie does like the bubble baths that she gets to take now that she does not have a central line. We are just enjoying our time off and trying to remember what it is like to have a normal life...oh and I am desperately trying to find the routine and schedule that I lost about a year ago! LOL (good luck with that huh???)

***Katie is scheduled for a central line placement on February 22nd with tests/scans to follow the next couple of days. Please keep us in your prayers...waiting to get the results back is always a very nerve-racking time.***

***Please pray for my mother as she is having some health problems and has some tests this week. Thank you for your faithfulness in praying for us.***

Going Home TOMORROW

We should be able to go home tomorrow after Katie's 9 o'clock (a.m.) dose of medication! I am so excited that I can barely contain it! She is doing great. Eating like crazy and playing most of the time. Nothing else new to report. We have scans/tests at the end of February and then will begin immunotherapy at the beginning of March. Other than that we should be able to just enjoy life!

Pictures

Thought I would add a recent picture of both of the girls. =) I can't believe that my babies are 4 years old and 18 months old! Time flies fast.

Update

Katie will get to go home on Sunday. She will NOT have a central line when she comes home. They will put it back in before we get our scans at the end of February and then begin immunotherapy at the beginning of March. Katie is doing great. Aunt Karla came and stayed with her for Tuesday and Wednesday night. I greatly enjoyed the break and the time I got to spend with Laura Beth and William. Thank you for the prayers and support. We appreciate you all.

Grrrrrr......

Katie had to be stuck TWICE today because the first time didn't work...and now they tell me that she has a NEW blood stream infection! Yeah go us! I covet your prayers for peace. I am so upset that my fuse is very short. Even with my little drunk girl (they gave her some adavan to calm her before sticking her...and she is one happy drunk!). Hope every else's day is going better than my Monday is. The infectious disease doctors should be coming by today to let me know what the plan is. So much for having a little break before beginning immunotherapy.

Hurry Up and Wait

They took out Katie's central line yesterday and placed 2 peripheral IVs in her left hand/forearm. She handled all very well and was in a great mood. After we were sure she was doing okay after anesthesia, William left to go home. Katie has been doing well. She has complained some of her hand hurting and tonight the nurse took one of the IVs out due to swelling in her hand. Please pray that the remaining IV will hold out until we can get out of here. They have found a name for the bug causing Katie's line infection. Apparently it is a common one among bone marrow transplant patients...you would think that they would have guess this then?!?! You would have been wrong. Also they say that Katie's pneumonia is getting better. They have done 3 separate chest X-rays now. Katie also had to have a blood draw today and didn't get to upset with it. Well that is not true...she did get very upset but it did not appear to hurt as much as she thought it was going to. Please pray for strength for all of us...this hospital will wear you down...but you have to continue to fight for your child and yourself. Thank you for all of your prayers.

9th Floor

Katie was moved to the 9th floor last night. They removed her central line this morning and put in 2 IVs in her hand. She is doing well and eating her Spaghetti O's & Meatballs right now. They are unsure of the exact name of the infection that caused her line infection (she had a line infection and a touch of pneumonia.) Once they know what the infection is then they can tell us how long we will have to stay here. Pray that it will not be very long. Right now we are all doing pretty good.

Life on the 8th Floor

Katie has not had a fever in about 48 hours. She also has not had problems with her blood pressure in about that long. She is eating well and is in a good mood for the most part (Tonight her giggle box has been turned on). Yesterday after getting to the 8th floor, I went home so that I could go to my doctor's appointment (annual exam...just a check up with my favorite doctor in the world, Dr. Smith) and so that I could go to work. I have started working PRN for a company that has contracts with home health agencies, the school systems, and early childhood intervention programs (ECI) in the area. So far, I am seeing one person for home health and am starting in Madisonville schools tomorrow. William stayed with Katie...and he has had a difficult day. They are now saying that she has a touch of pneumonia (much like her sister did a couple of weeks ago) and that they want to keep her until at least Tuesday to keep her on IV antibiotics. The first doctor that came in did not explain herself very well and as a result she upset William, who eventually told her to get out of his room. Later Dr. Simko came and spoke with him, explained things better, and William calmed down. Dr. Simko has been with us since Katie first came into the ER this past Tuesday. Of course, by the time that they came to talk with him, he was already upset because they had taken off Katie's dressing to do her echocardiogram and did not put it back on (in effect leaving her open to infection). It took me calling and speaking with Dr. Russel's nurse practitioner before they came in to put a new dressing on her. But it is fixed now. Well that is about all for now. Thank you for your prayers. We are doing better.

Update

We just made it to the 8th floor! Yeah! Other than that there is not anything new to report...they do not have any results back from the cultures yet. Preliminary tests show that it is not the flu or a rhinovirus. Time shall tell. Pray for a speedy recovery. Katie has not had any fever since about 2 this morning. Her blood pressure has, for the most part, stabilized and is within the normal range. Thank you for your prayers and loving texts, calls, and messages.

Continued Prayer

We were admitted to the PICU about midnight. They put us in the PICU because she had to have dopamine to help elevate her blood pressure. However, soon after getting to the PICU they weaned her off of the dopamine and her blood pressure has been holding its own. It continues to be low but not so low that she needs medication to assist her body in elevating it. Her fever continues to persist though it is coming down some. Katie's complaints of pain seem to get better when her fever is lower. They are suspicious of a line infection, though it is not as bad as last time. The nurse says that it is possible that we will get to go to the BMT floor today. Please keep us in your prayers.

Prayer Needed

As I write this, I am sitting in the ER with Katie and William. This morning we went to the clinic and got a check up with Dr. Russell and everything was going good. When we got home Katie took a nap. When she woke up she had a fever of 103. We called the oncology people, packed our bags, and headed to Houston. Please pray for us. Ironically we are in the exact same ER room that we were when we were here the first time back in May...it is not a happy time. =/

Home...

Katie and I headed to Houston on Tuesday. We spend TWO hours in the waiting room, just waiting to get blood work and then another hour waiting to get to see the nurse practitioner. They said that everything is where it should be except for her white count which continues to be a bit low. They did NOT have an answer as to why it is still low...We have scans and tests scheduled for the last week in January...and then hopefully we can get her central line taken out for about a month and half. We are planning on doing the immunotherapy beginning about the middle of March. It will be nice to have a break. The immunotherapy consists of 6 cycles that are once a month in the hospital for about a week each.

Tuesday night/Wednesday morning Katie woke up feeling bad and having a low grade fever. I gave her some Tylenol and some Imodium (the blasted diarrhea is back!) After some rest yesterday she seems to be doing some better. Laura Beth has had a cold since Sunday and Katie just finally caught it. William and I seem to have a little touch of it as well. Hopefully we will all get better soon.

As for my job...God has been doing some great things. A friend of mine got me a PRN job while her OT is out on maternity leave...it only will last a couple of weeks but I may be asked to help every now and then even after she comes back. I also have been talking to a woman about a part time job in the school system and with home health. And then today my rehab director called to say that they may be wanting me back full time at the nursing home in Madisonville because the lady from Conroe is not working out. So we shall see...God has a plan in mind and I just have to be patient! LOL (if you know me then you know that this is a very hard thing for me to do...I like to have control of life...hahaha)

Nothing new...

Katie and William headed to the BMT today. Her hemoglobin and platelets held steady since Monday. She needed some medicine to boost her white count. They took her off of the TPN/lipids (IV nutrition that we were doing at night...but now Katie is eating well and doesn't need it.) The BMT also released her from their care back to the solid tumor doctors (Dr. Russell). We have an appointment on Tuesday with them. All is going pretty good. Thank you for your prayers and support.

More of the Same...

Nothing much to report. Katie is doing well. We are still having to go to Houston 2-3 times per week for blood work and to get transfusions. Today was the first day that we did NOT have to get blood products! We were home by a little after noon (of course we left the house by SIX in the morning!) But of course I didn't stay home...I took William to the doctor in Bryan. As for me...well I now do not have a full time job. They decided that since I have to be away so much that they need someone more stable...I will continue to work PRN (as needed) for that company and am on the lookout for more opportunities for PRN work. Thank you all for your prayers and help. We appreciate it!

Merry Christmas...Happy Birthday...With a touch of sadness

I would like to say that we hope that everyone had a wonderful Christmas. I hope that as this new year begins that you remember, each and every day, how very important it is to enjoy every moment that you have with your family. We were reminded of this when we learned of a friend of William's who was killed in a car accident on Christmas day. Chris Heath was the son of William's boss and the son of William's first grade teacher. He was 26 years old. Please pray for this family. As we already know it is very hard to lose your child, no matter how old they are.

Yesterday was Katie's 4th birthday. And it was a wonderful day! She enjoyed the day with both sets of grandparents, all her cousins, and aunts and uncles. She even ate a little of her hot dog and birthday cake. We truly had a great day. As a result today was not so great...Katie was exhausted from playing more than she has in about 2 months. We had to go to Houston again today and she slept all the way there and back...and then took a nap when we got home.




Please continue to pray for us as we attempt to go back to life as normal...Katie will begin going back to daycare as she is able...I will go back to work (though there may be some changes there) and hopefully Katie will get to go back to dance class in January. Thank you for all of your prayers and support.

***Side note: Layla was discharged from the hospital the Monday after we were. She is having many of the same problems that we are. But just as we are...she is continuing to get some better every day.***

Home...

We have had a rough couple of days. Monday, today, and Saturday we had/will have to go to Houston for check ups and platelet transfusions. Katie and I have had a lot of trouble dealing with life in general. She really hates the medicine she has to take (why they can't make this stuff go through her line...I don't know). And when she melts down I get very angry and have trouble controlling it. I just have a very short fuse. I know that I should be so very happy to be home and be with both my girls and husband...but it has been very hard to not be depressed, especially with Katie so sad a lot of the time. It is hard when there is no end in sight for everything that is going on. Now, I look back on things my previous patients and their parents have gone through and I now understand a little better. It is so hard dealing with your child when they are in pain...especially when it happens all the time.

Any way...enough of sadness. We wish all of you a merry Christmas and a happy new year. Take time to enjoy your time with your family and friends.

Home At Last

We arrived home late Friday night. Today (Sunday) is the first time Katie has begun to attempt to eat...she continues to throw up a couple of times per day due to withdrawal from the morphine. She was sad this morning when she could not go to church...after daddy and Laura Beth left, Katie and I got out her Princess Barbie dolls and Barbie house and she forgot all about not getting to go to church. Every day she is getting some stronger. She continues to have meltdowns and cry about having cancer but hopefully that will get better as time progresses. Tomorrow, she and I have to go back to Houston to get a check up with the BMT clinic and probably get blood and platelets. Thank you for all your prayers and gifts...we really appreciate them.

Ode to Sleep...

Exhausted...laying on a hard couch...takes forever to fall asleep...brain is swimming with all the commotion during the day...almost asleep.

"MOMMY I have to go to the bathroom!" Awake again!

Falling asleep...BEEP BEEP BEEP...IV alarms going off....call the nurse, hit the silence button..

Falling asleep...PCA comes in to weigh my daughter...screaming because she doesn't want to

Help PCA...go back to bed...falling asleep...Nurse comes in to administer medication...

Falling asleep...BEEP BEEP BEEP...Alarms going off again..call nurse, hit silence button...

Falling asleep..."MOMMY I have to go potty!" Awake again...

Falling asleep...PCA comes in to take vitals and wakes me up to ask if she has a wet pull up!.... (how should I know...I WAS asleep)

Falling asleep...doctor comes in...it is morning already!

--Christa Connor

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Now you see why we want to go home! We are tired... Please pray that Katie does well over the holidays and that we all get some rest...love you all...

HOME

We are going home tomorrow! We are so excited we can barely contain ourselves! We have a lot to do before we can go home (get all the home care in order and appointments for blood work etc, and PACK a month's worth of stuff!) Katie is drinking more (I remind her about every 5 minutes to take a drink). And she has now taken her first dose of methadone (to help her body adjust to coming off of continuous morphine). They have taken off of all antibiotics, antiviral, and anti-fungal medications. She didn't need platelets today...for the firs time in about 2 weeks! Did I say we were excited? We will be home for CHRISTMAS. Thank you God! He is awesome!

Bliss...

Today I got to enjoy a wonderful day at the Spa! A little band of angels from BVRC bought me a gift certificate to a Spa and Salon down the street from TCH. My parents and sister came and stayed with Katie. She had a really good time and played the whole time they were here. It was wonderful for her to get to play with them. Once they left, however, Katie began to throw a "terrible, horrible, no good, very bad day" fit (a quote from a book...Alexander and the terrible, horrible, no good, very bad day...one of my favorites). She is very tired of people coming in and 'messing' with her. She is TIRED of being in the hospital. Thankfully as I write this she is sleeping. Please pray for her emotional state of being. She is completely and totally tired of being in the hospital. She is yelling at people, shaking her finger and beginning to hit at them. All things that under normal circumstances she would never do...well she does shake her finger at people normally but she comes by that honest!

Anyway, here is my rendition of what my day at the spa was like! (I got a body polish, balm massage, and a facial...I told you the women of BVRC are better than any other in the world!)

When I got there, they took me to a dressing room and told me to take off my clothes (underwear included) and put on the robe and shoes provided. The robe was SO soft! I then went with my massage therapist into a room that looked liked a supped up locker room (much nicer of course). I was given disposable bra and panties to put on and then got into a large pill shaped machine, where my body was steamed for 15 minutes. Then the lady came in and rubbed scrub all over me (legs, back, tummy, and arms). I then steamed again for about 20 minutes. Then she came in and rinsed me off. It was kind of like someone else giving you a shower! Good thing I am NOT modest. LOL Then I had a deep tissue massage with balm. I should not itch again for a while (winter makes my skin so dry). But I have a feeling I will HURT in the morning...when she said deep tissue that is what she meant! The best part was having a facial...I can't really tell you what she did because my eyes were closed the whole time but it was WONDERFUL. She massaged my face, upper chest (around my collar bones) and my arms...it was heavenly. I thoroughly enjoyed myself...and I ended the afternoon with eating a burrito bowl from Chipotle! **Now you know I had a good day! LOL** The only thing that could have made it better would have been a drink from Starbucks!

Thank you so much to the women of BVRC...it is the best place to work...even if you only work there in spirit. My Christmas stocking is up so I still consider myself to be working there! I know for a fact that there is NO better place to work...where else do you get to work with your friends and play around on the floor all day with kids...I mean do therapy with kids *wink*

And thank you to my family who took care of Katie while I was gone. It meant a lot to me.

Thank you to everyone who prays for us. Your prayers are very much needed and appreciated. Prayer is the most important gift you can give us. Thank you, also, for all of the gifts and monetary donations that you have given us. We could not have made it through this year without them. Thank you.

BMT Day 21

Katie's counts continue to go up. Today her ANC was 1.74; platelets were 15; hemoglobin was 8.1. She got platelets today and will probably need blood and platelets tomorrow. They have gone down on the IV nutrition to 18 hours instead of 24. Hopefully she will eat some today. She continues to have diarrhea but all of the studies have come back clear. Therefore they started giving her some Imodium today. Hopefully this will help and make her feel a little better. She has been up some to sit on the couch with me. The doctor even said that her mouth and rash looked better. We are looking forward to going home!

BMT Day 20

Wow...we have been in the hospital 20 days now! It is amazing...Today Katie's ANC was 0.98! If it stays this way or better we should be able to go home next week. They are working on decreasing all the antibiotics that she is taking, decreasing the morphine, and decreasing the IV nutrition she is on. Katie hurt more today due to the decrease in morphine BUT it was manageable. In the afternoon she was up and doing crafts on the couch. All in all, we are doing better. Please pray for continued healing and decrease in pain for Katie. Thank you all for your love and support.

BMT Day 19

Things continue to get better...Katie's ANC is 0.41 today. She had a good day...we decorated her little Christmas tree and are in the process of finishing the gingerbread house that she started with her daddy. She did have to get blood and platelets today, but that is normal. She did have a fever (101) once today but that could have been attributed to getting the blood products. Thank you for your prayers and encouragement. They are helping!

Looking Up

Katie's ANC (absolute neutrophil count; i.e. her white blood cells) was 0.13 today! This is the first time it has been above zero in over a week. When it is 1.0 for 2 days in a row, we will get to go home! She hasn't had a fever all day! And she even played some today...things are looking up!

A Turn for the Better

This morning, Katie felt truly horrible. She had to have platelets at 4 this morning due to throwing up blood and having low platelets. She was feeling truly awful all morning. BUT then her daddy showed up....and she soon was sitting up and playing with her Baby Alive (Isabelle is what Katie named her...because she has curly hair like her friend named Isabelle.) I gave her a bed bath and found that she now has a rash over 90% of her body. They don't know what has caused it but we are now putting steroid cream on her and some other stuff too. We cancelled the CT scan because Katie was unable to tolerate it last night and I would not allow them to sedate her for it. Her fever has gone down. The highest it has been today is 101. Thank you all for your prayers...they are working. I am going home tonight to be with Laura Beth who is sick now...Maybe the break will do me good. =)

BMT Day 14

Today is some better. Katie has felt a little spunkier today...she told several nurses to get out of her room! They did a chest x-ray and found nothing. They are now planning a CT scan for about 8:30 tonight! *This is better than when they woke me up at 11 last night and asked if it would be okay for them to take Katie for a chest x-ray right then! I said, "ummm NO".* Katie continues to feel poorly. Her blood counts are low...she got both blood and platelets today. She continues to have persistent diarrhea. Her mouth is getting some better I think...her throat and stomach/intestines still hurt quite often. Thank you for all of your kind words and prayers. It really does help. Life is not easy right now but I am looking forward to next year when she is better!

BMT Day 13

The doctors say that Katie has the common cold. This could be the cause of her fever, although they are not sure why it gets so high. My mom says that she has heard that this is due to the stem cells doing their job. I don't know, but I just want it to be over. I am tired of being the momma who has to make my child do things she doesn't want to do. I am tired of dealing with these crazy nurses and doctors. I am tired of having my poor baby being so sick. I am tired of seeing my daughter who just 2 weeks ago was running around and being a normal 3 year old...now in the bed and unable to stand by herself without shaking. I am tired of seeing my little girl go from getting some meat on her bones to being as thin as a rail. I am just tired. Hopefully the week will go by quickly.

Continued Fever

Well we made it through the night. Katie continues to have fluctuating fevers. It goes from normal to 104 randomly. Due to the mucusitis (spelling???) she has very thick saliva and chokes on it often. As she told the nurse, "something is just NOT right". Please pray for my poor little girl. And for me, the momma with no sleep. : /

Temperature

Katie had a rough night last night. Her fever spiked to 104. It went down during the night but now it has spiked back up to 104.5. Tylenol and cool rags are about all we can do at this point...please pray this stops soon! Thank you to everyone who prayed for us last night...we love all of you.

Thought for the day

The following is a daily devotional I get from the sermons of Adrian Rogers. It reminded me of what I am suppose to be doing...

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BIBLE MEDITATION:
John 12:24 - “Except a corn of wheat fall into the ground and die, it abideth alone: but if it die, it bringeth forth much fruit.”

DEVOTIONAL THOUGHT:
You can tell the size of a Christian by what it takes to stop him. Hebrews 12:1 says we are to “run with patience the race that is set before us.” And this word “patience” is not used in the sense that we use the word. It literally means “endurance.” Everybody knows that a runner is going to win or lose primarily by his endurance. You cannot quit. When it hurts, you cannot quit. When your lungs are on fire, you cannot quit. When your feet feel like lead, you cannot quit. When your sides ache, you cannot quit! You’ll never be a spiritual athlete if you’re a quitter! No pain, no gain.

BMT Day 11

Today was suppose to be a day of fun...unfortuanately Katie did not feel up to it. Yesterday she was put on isolation precautions due to her fever and runny nose; therefore Santa and his elves could not come in the room. The good thing is though that they let Laura Beth come in. She was so excited to see me and Katie. She was a bit confused when Katie didn't want to play or even sit up. The Chandler's Tree people brought a TON of presents. Katie got a set of princess Barbie Dolls, a Barbie house, a Baby Alive, a Littlest Pet Shop daycare, a Littlest Pet Shop toy pet, a leapster game, and some DVDs. Laura Beth got a pull toy/shape sorter, a piano, and a Elmo talking phone. William got a bag full of goodies to eat, and I got a bag full of stuff to pamper myself with (bath stuff, socks, and coffee.) They also brought a little tree for the room and stuff to decorate it with. Even though poor Katie didn't feel up to it, we had a nice time. We were truly blessed by these wonderful people. Then Laura Beth and I headed for the hotel to spend the night together. It is nice to be away from the hospital for a little while. William is having a tough time of it though (he is with Katie at the hospital). Today one of the lumens in Katie's central line got clogged (she has two so that the she can be hooked up to more stuff). They have put a solution in to dissolve it but so far that has not worked. If that does not work, they will have to do surgery. Please pray for Katie. She feels just rotten and now she is no longer hooked up to a morphine pump, is having diarrhea, and continues to have low grade fevers. All in all she is not doing too well. Thank you for your support and prayers.

BMT Day 10

Once she got a morphine pump, Katie slept...from about 4 in the afternoon until this morning. The one time she was awake, she attempted to eat some chicken nuggets and apples from McDonald's (her favorite) but after taking one bite she said that they tasted bad and she couldn't eat them. Unfortunately she didn't feel up to doing much when Nana and Aunt Ashley were here. Today, she has slept through most of the day with some exceptions. She livened up some to do a craft and a little while Grandma and Grandpa were here. BUT...today she began saying that her ears hurt and her nose was running. Then this afternoon she spiked a fever (103). She then threw up the Tylenol that they gave her. Her fever has come down some...please pray that the fever is just related to her low blood counts and that she gets better soon. Thanks =)

Sad Days

Last night and this morning were really tough for Katie. She was very upset and crying for several hours last night. I think that the meltdown was due to the pain she was having but to be truthful she needed to cry and get it out. She told me how much she loves and misses her sister and her daddy. She also told me how much she misses her 'normal' life (i.e. dance class with her friends, going to daycare with Kate Hagaman, playing with her sister.) It hurt so much to see her little heart breaking. And of course she told me how much she hates the nurses and being in the hospital where 'they do things to hurt her'.

This afternoon was some better after they got her a morphine pump that we have control of. It gives her a continuous low dose of morphine and then when I feel she needs more I can hit a button to give her a little more. The nurse also got her anti-nausea medication scheduled for every 4 hours instead of every 8.

But there is a bright spot....tonight my mother and sister are going to come stay with Katie while I go out to eat with a friend. Then tomorrow, Grandma and Grandpa are stopping by on their way home from Uncle Pie's funeral. And on Saturday Laura Beth and William are coming up for the Christmas celebration! Maybe this will lift her spirits. The nurse said it is going to be a rough week for us...but hopefully her blood counts will start to come up and the mouth sores will go away and she can go home soon.

A bright spot

Some ladies came by today with all kinds of things for Katie and her room. They brought a bean bag chair, a rug, a soft pink blanket, a Dora blanket, a Dora doll who dances, ballerina sheets, books, and pajamas. She wasn't too happy at the time but I did see a smile on her face for the first time today. Then the nurse gave her some morphine for her mouth pain and she felt ALOT better. She has been playing in her bed and drawing. Tonight the hospital provided me with food from Jason's Deli. The guy who brought it said that on the day of transplant that the BMT floor provides food for the family. They provided enough for 3 or 4 people! It was good and I have left overs for tomorrow and maybe the next day! So all in all the day has turned for the better. Thank you for all of your prayers...we can certainly feel them.

Stem Cell Rescue Day

Katie was given her stem cells back today. There were four small bags of cells that they gave to her, one right after the other. They were right....as soon as the cells hit her body, she coughed, & you could smell the strong creamed corn smell. It is enough to make you nauseous. And poor Katie has to smell it and taste it. She has thrown up twice since they gave her the cells. She is in a sad mood today. She says that is because she misses her sister. The good news is that she will get to see her on Saturday. On Saturday a group called Chandler's Tree Farm will be coming in to bring presents to the kids on the BMT unit and their siblings. (The rumor is that Santa is coming too!) For the four hours that they are here, the hospital is allowing siblings to come up. Please pray that Katie feels better soon. Thank you for all of your prayers and kind words.

**Also please pray for the Connor Family. Great-Grandpa's brother, Uncle Pie, died last night. It is a hard time for great-grandpa especially since Uncle Pie was Great-Grandpa's last living sibling.

BMT Day 7

Today has been pretty quiet. Katie has not felt well today and has had a couple of doses of anti-nausea medicine today. Tonight, after a little medicine and another nap, she felt up to playing. She loves playing with her little Polly Pocket "Cinderella".

The conversation goes like this:
Mom: Why do you put clothes on Cinderella if you are going to just take them off again?
Katie: Cause that is what you are suppose to do! Agggh...I can't get it on by myself *scream*
**Changing the clothes for Polly Pocket is somewhat challenging for my almost 4 year old.**

Now she is doing some crafts that the Radio Lollipop brought her. Oh the joys of glitter! Lucky for us we have figured out that the little pink buckets are for more than just throwing up in. An extra one can be used for glitter application!

**She should get her stem cells about 10 a.m. tomorrow. Please pray all goes smoothly.