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.