Good news.....Not so good news

Hello again to everyone. Today was the day Katie was to have her stem cell collection. The procedure went well, it lasted about three and half hours once they actually got started. The collection was so easy in fact that Katie slept through most of it. The only bad thing about it is that it is VERY boring. The not so good news is, that they did not get enough cells this round. They are going to collect again tomorrow morning in hopes of getting the rest of what they need. The magic number is 2,000,000. Right now they only have about 800,000. If they don't get enough cells tomorrow they will have to try again Monday. Please pray that we get the rest tomorrow because the catheter is uncomfortable for Katie, and she is having a little trouble walking. Katie is in a GREAT mood and is in rare form despite everything she has gone through the past couple of days. William is going home tomorrow because he has to go back to work. Karla is coming to get him in the morning and she is bringing the baby for us to see. Please continue for her counts to be where they need to be in the morning. Thank you all so much for everything.

The Exorcisim

Hello everybody, as we told you earlier Katie had a catheter put in her right leg so they can collect her stem cells in the morning. The procedure itself went very well. Katie even let the nurse her take away from us without any problem so they could get her ready. So we were excited about that. The procedure took about an hour or so total. The nurse then came and got us from the waiting room to take us to her and that's when it happened...... our sweet Katie was apparently possessed by some kind of demon that we have never seen before and hope we never see again. We thought we were gonna have to have an exorcism right there in the recovery room. Katie had the worst reaction to the anesthesia that we have ever seen. Katie told us that she didn't want us there, and she threw her blanket away and for those of you who know her know how much she loves her blanket. The recovery room nurse was very patient with her and was trying to keep her calm so she would'nt hurt herself and her new catheter. Katie was kicking and screaming bloody murder for about an hour straight, she hit her head on the bed railing and was kicking and flaling about. They finally gave her something to help calm her down, which helped some. Finally the demon left her body and she is back to normal. Katie is however pretty sore but in good spirits. We are staying in a hotel in Houston. We all came to the hotel and took a much needed nap. We have to be back at the hospital at 7:00 A.M. tomorrow. Thank you all so much for your prayers and support through all of this.

Update...

Katie is having the catheter put in to collect stem cells today. Tomorrow (and possibly Sunday) they will collect the stem cells. She will be sore and not want to run around much. We plan on laying around the hotel room and watching t.v. She will begin radiation on Wednesday (November 4).

These are the Days of our Lives...

Yesterday, Katie and I headed to Houston to get her blood drawn to test for her stem cell level. She was NOT yet at the right level, so they sent us home. We made it back into town in time to go with William to the doctor. The kids stayed at great-grandma & great-grandpa's house while we went to see the doctor. (Great-grandma made homemade chicken and dumplings MMMM) Dr. Veazey said that he thought William had a herniated or blown disc in his cervical spine (neck), so he sent him to get an MRI. Today, the doctor's office called to say that he does NOT have a herniated or blown disc but instead does have degenerative disc disease (kinda like arthritis in the spine). They have referred him to another doctor to get a shot. Right now he is doing well on pain medicine (aka vica-friend!!!!) Tomorrow, we are heading BACK to Houston for the THIRD time this week. They are prepared to give Katie blood and platelets tomorrow. Hopefully her blood levels will be at the right level and she can have her stem cells collected.

Update

Sorry that I have not written in about a week...William hurt his shoulder/neck/arm on Monday (Oct 19th) and has been in a lot of pain. I even had to take him to the ER on Thursday morning. They said that he had a strain in his shoulder and sent him home with a referral to an orthopedic doctor and some pain pills. So he has been pretty much out of commission this week. Laura Beth has had a cold. The doctor says it is just a virus..she has lots of drainage and I am sure she has a headache from it all. And she has two teeth that have come through this week as well! On the brighter side, she has really taken off with her walking!! She is going to be running before I know it. Katie has been doing pretty good. Nothing new really to report there. She had to get blood on Tuesday (Oct 20th) and platelets on Friday (Oct 23rd). Today we came to Houston for a radiation oncology appointment and a bone marrow transplant appointment. We got up extra early and got everything in the car and headed out. It was pouring rain and to say the least it was NOT a fun drive for mom. Katie slept all the way though. Thank goodness that we didn't get into too much traffic along the way. We made it to the radiation oncology appointment on time and got to see him in order to get things set up to begin radiation after stem cell collection (hopefully next week). We then headed over to TCH (radiation is at the Methodist Hospital next door). After taking her blood to run tests, they came back and stated that she was not ready for stem cell collection yet. AND that she needs to get blood and platelets today. They are running another test to determine when we might be ready for stem cell collection...stay tuned!!!

Change of Plans =)

Katie's hemoglobin was low so we made a run to TCH today to get a blood transfusion. Hopefully the rest of the week will be uneventful. We have an appointment on Monday with the radiation oncologist and the bone marrow transplant people. If Katie's blood levels are at the right amount, on Tuesday, she will have a phoresis catheter (central line in her hip) to have the stem cells extracted. Hopefully it will only take one day to do the extraction and then they can remove the phoresis catheter.

Yesterday we had a pretty good day (well most of it). Laura Beth had a 15 month checkup. Katie stayed with great-grandma while I took Laura Beth to the doctor. Katie had a GREAT time playing with great-grandma. Laura Beth got 3 shots and was very cranky all day (rightfully so!) Katie and I played candy land and memory when we got home and lounged around while Laura Beth napped. Well, that is about all the news for now.

Chemotherapy Day 3

Katie continues to do well with this round of chemotherapy...she has only been sick once (the first night). William and Katie are enjoying their stay with Aunt Marian and are having a blast.

William reported that he saw Layla again and that she started radiation yesterday.

William reported that last night after they laid down to go to sleep that the following conversation occurred:
Katie: "Daddy aren't you going to say a prayer?"
William: "Sure. Do you want to pray too?"
Katie: "No"
William: prayed and then said, "Do you want to add anything?"
Katie: "Yes"
William: "What would you like to say?"
Katie: "I don't know."
William: "Well, what do you want from God? That is what you ask Him for."
Katie: "To get better."
William & Katie: "Dear God please make me (Katie) better. Amen"
Katie: "Okay...now let's go to sleep, I am tired"

***Also please keep William's grandfather (Steele Connor) in your prayers. We found out today that his bladder cancer has returned. They have scheduled him for surgery on November 11. We appreciate your prayers so much and Katie is living proof that God is STILL in the business of healing. Thank you all so much.

Chemotherapy Day 2

William, Katie and I met with Dr. Russell yesterday. She was amazed at the miracle that has happened in Katie. They have decided that they will do one round of outpatient chemotherapy this week and then they will harvest Katie's stem cells about seven to ten days later. After that Katie has radiation and stem cell transplant. Katie did well with the first 2 rounds of chemotherapy yesterday and today (takes about 4 hours in the clinic infusion room). She and William stayed at the Ronald McDonald house last night. Katie found joy in playing air hockey! She had to go to the bathroom often to urinate and threw up once. They are staying at William's aunt's house tonight. Katie is doing well and being spoiled rotten. They went to Cracker Barrel and Katie got a harmonica, bean baby, and a face magna-doodle. And of course she got to feed the fish with Aunt Marian. One of her favorite things to do. She is doing well and not feeling too sick today.

I went back to work today...yeah...It is always fun to come back to a mess of paperwork. But it is a nice break from all the medical things....

***Update: Laura Beth is WALKING!!!! She will only do it when she feels like it but I have seen her walk about 10 steps at a time.***

William said that he saw Layla in the infusion room today but did not get to talk to her mom. He stated that she looked good. Please continue to pray for her as well as us. Again thank your for all of your prayers and support. We love you all very much.

Rest...sweet Rest

Today did not start so great...I have to be honest here...Katie & I have been in very cranky moods =/ I should be so excited I can barely contain it BUT I think all the stress of the past 5 months has gotten to me. Katie woke me up this morning by whining & crying because daddy was not here for her to kiss bye (he left for work at 6 & it was 8 at that point)...then Dr. Russell's office did not answer (I figured that they were closed because of Columbus day...but found out later that they just weren't answering the phone, even though they should have been open for about 45 minutes at that time)...so I was a very unhappy woman. THEN Katie continued to whine & I began to yell. After a much needed cry in the shower & Katie talking to daddy on the phone we are all better. I NOW RESOLVE THAT TODAY WILL BE A GOOD DAY... ONE OF REST & FUN TIMES WITH THE GIRLS THAT I HAD PLANNED!!!!

Tomorrow we have an appointment at 8:55 to see Dr. Russell...then we will begin a 5 day regimen of outpatient chemotherapy, followed by stem cell collection which will take 3-4 days. Pray for peace and comfort...and for me to not lose my cool...

St. Jude's Day 5

Sorry that this entry is a bit late...I have been busy since Friday.

Friday was fast & crazy day. Katie had her MIBG scan at noon. This test takes one to two hours to complete. She has done it without sedation previously but we thought it best to let her be sedated for this one because it is very stressful for her & we wanted them to be able to get the best pictures. Because she was going to be sedated she could not have anything to eat until after the procedure. She could drink up until 10 a.m. Of course, when she can not eat she is very cranky. (Me too!) To make matters worse, when walking to the hospital from where we were staying it began to rain...and HARD. By the time we got to the hospital we were SOAKED. Luckily I was pushing her in a wheelchair, so I ran like the dickens to get us there but we still got very wet. We found a warm blanket & in about an hour we were dry. We made it through our morning appointments & Katie played with a child life person for the hour we waited for the MIBG test to begin. After the test she was very cranky, unsteady on her feet & loopy from anesthesia & due to the stress I have been under, I did not respond in the best of ways...to say the least neither of us was very happy. THEN they had her scheduled to get her dressing changed. This is not the most comfortable thing for Katie & she was not happy about it. Afterwards we went to wait to talk to Dr. Navid. While waiting for that appointment, Dr. Russel called to 'try and clear up some confusion'. What she stated was the following: Because Katie did not get to the point where she showed No Evidence of Disease with the initial 5 rounds of chemotherapy (induction) the goal for treatment for her is no longer to 'cure' her but instead to 'maintain' her disease & to hopefully make it go away slowly. This upset me greatly...I cried for 75% of my conversation with her. Things changed (for the better), though once I got into talk with Dr. Navid. Dr. Navid stated that Katie had less than 1% disease in her bone marrow (previously 5%), no remarkable findings on her CT scan, and one spot of disease on her MIBG (which is lighter than her previous one). Because of this Katie does not qualify for the study...she does NOT have enough cancer in her to qualify for this study. I was in shock...from there I left to go & see when we could get a flight home (Dr. Russell wants us to see her on Tues to begin a round of chemotherapy & hopefully go to stem cell collection/bone marrow transplant after that). Transportation said that if I could get ready to leave in 30 minutes, I could fly out at 7. Luckily I had packed up that morning in hopes of getting admitted for the immunotherapy. I raced back to the room & put the last of our stuff in bags & was ready to go. The airport was confusing, Katie & I didn't have seats next to each other (luckily the man that Katie was going to sit beside switched seats with me), I hit my head on the overhead compartment, the ride was very bumpy, & we had difficulty finding Aunt Marian....BUT we made it home all in one piece! We stayed at Aunt Marian's house on Friday & William came to pick us up on Saturday. Katie has been very grumpy & whiny but we are very happy none the less. We praise GOD FOR THE HEALING HE HAS PERFORMED! Thank you for all of your prayers...they are working! Please continue to pray for 100% healing! And a big thank you to all of our church members who have done 24 hour prayer vigils for us. We love you all so much and thank God for our wonderful church home.

St. Jude's Hospital (Day 4)

Today has been pretty uneventful...which is a good thing. Katie got through her CT scan & her MIBG injection without too much difficulty (you have to take some oral sodium potassium drops with the injection that do not taste too good). Dr. Navid found us in the cafeteria eating breakfast & told me that Katie has tested positive on their screening blood work for Hepatitis B. We did more blood work today & will find out if she really has it or if she has just been exposed to it recently...we will meet with the infectious disease doctors tomorrow before our MIBG....probably got it from some of her blood transfusions (she has had 15+ transfusions since May). Not really a big deal, as far as I can tell, but just one more thing to put in the mix...GOOD GRIEF...LOL... Tomorrow Katie has the MIBG and then we will meet with Dr. Navid to discuss options again. I got a call from Dr. Russell (which I missed)...she was calling to try to clear up some things, as she had gotten e-mails from Dr. Kushner in NY and from Dr. Navid at St. Jude's... Anyway I will call her back tomorrow....Please pray that all these tests come back with good news...Katie has been complaining of headaches, leg, hip, and back pain the past couple of days...and of course this concerns me...but my prayer is that it is just related to all the tests & the stress of being so far away from home with a stressed out & crazy mom that sometimes has her OWN meltdowns... dang I wish I knew a good OT that could brush me! (little OT joke....) May God bless all of you for your kindness & outpouring of love for us.

St. Jude's Hospital (Day 3)

Today has been a little better. Katie had her bone marrow aspirations & biopsies today as well as her echocardiogram. She was asleep, of course, for the bone marrow procedure. Then while she was still asleep they did most of the echocardi0gram. By the time I got to her, she was just waking up and they were finishing her echo. We got her medication that she has to take before the CT scan and the MIBG scan, a line nurse changed her dressing, and met with the child life people. Katie and I even played Dora Scrabble Junior....she had a pretty good day. We have her CT scan tomorrow....they do things a little different than TCH...we have to give her the contrast 3 and 2 hours before the CT scan. So we will be getting up to drink stuff at 6:30 a.m. & 7:30 a.m. with the scan at 9:30 a.m. Thank you all for your wonderful messages and encouragement. I am doing better and an afternoon nap makes everything better =) We appreciate all of your outpourings of love.

St. Jude's Hospital (Day 2)

Well...today has not been as good as yesterday. We spent a lot of time sitting around and waiting and getting lost while trying to find appointments. Really nothing new in the world of hospitals. Of course we had to recount our life history to the doctors and Katie had to get examined twice (once by the nurse practitioner and once by the attending doctor)...and then there was the eye exam. This was Katie's first eye exam and she was happy to do it UNTIL they put the drops in her eyes to dilate them!!! But we made it through without too much trouble.....the hard part was when the doctor (who looked very depressed by the way) came in to talk with me. When asked what my goal was for this study, I of course said "To bring Katie to remission/no evidence of disease and get her to transplant." The doctor's response was "Then this is probably not the best study for you. This study does not have a goal of putting your child in remission but instead will give her an undetermined dose level of this antibody that will probably not be at a therapeutic level for her." I, of course, was very upset by this and was confused, as this is not what Dr. Russell had told me. William of course became very upset when told this...and to tell the truth after I got Katie set up with watching a movie I cried quite a bit. I even threw a fit, as Katie would say.... I am just very TIRED of people telling my child is GOING TO DIE.....Before coming here, William and I were sure that this is what God had in mind for us...but now we are rethinking that....but then I think, "what has changed??? God does not change his mind....it is us that change." I of course am very confused AGAIN....I know everyone who has a child with a catastrophic disease must feel this way... Anyway...pray for us to find out what God truly wants for Katie...and pray that we can accept His will if it is for her to leave this earth earlier than we had planned....and please pray your BUTT off that this is NOT his will because I do not think I could handle loosing my 'cuddlebug'...Thank you for your prayers and support.

AMAZING!!!!!!!!

Wow!!! I have been truly amazed since arriving at St. Jude's Research Hospital. They have thought of everything. They pay for your meals, your housing, and our airfare. And they are very nice to boot! LOL Our room at the Grizzly House (a Ronald McDonald House) looks like something a five star hotel would have! I am truly amazed. God has blessed us beyond measure. Thank you to all of you who have been giving us so much. Your prayers, kind words, love, and support have been invaluable. I was truly worried about traveling so far away from home with just me and Katie...but as God planned it, everything turned out fine. We made it to the airport and onto the plane without to much difficulty =) And Katie was pretty good during the flight and afterwards while finding our luggage and our transportation. She enjoys finding the car seat in the van to know where to sit! We arrived in Memphis a little before 6 and got to our room about 8:30 or 9 (we had to be registered, eat dinner, and get blood work and stuff done). Katie slept well and now we are ready for a full day!

Craziness!!!! It is a good thing!

This last week has been a little crazy. All the oncologists have been at a conference for the Children's Oncology Group in Dallas this week. When I say all oncologists I mean the ones from NY, St. Jude's, Cook's Children's, and TCH, among others I am sure...all the ones that I needed to talk with this week to make a decision about our next step. But of course God had a plan I did not know about. We had decided to do the 3F8 in New York. Once I finally got a hold of a doctor there, he stated that we should get 2 more rounds of high dose chemotherapy before beginning antibody treatment. Dr. Russell didn't agree with this, as she thinks it might cause more harm than necessary. While at the meeting she talked with some of the people from St. Jude's and found out about a study being done there. Once we agreed to this option the ball got rolling very quickly. Appointments begin for us at 9 in the morning on Tuesday October 6th. Katie and I should be flying out on Monday. (We will be there about 2 weeks). We do not yet have an airline ticket set up but St. Jude's should help us with that. The good thing about St. Jude's is that they do not have us pay co-pays. They will file with our insurance though. They also provide housing for free and help with meals. Please keep us in your prayers as this is a very stressful time...even more than previously if that is possible! Thank you for your continued support.

Needed Prayer

Today was a great day for Katie. It was her first day back to daycare! She woke up at 5:30 but was able to lay on the couch until 7:15 when mom got up. However, once she got up with mom she was BOUNCING...It was like she had ants in her pants. Once at Granny's she ran over the big girl's side of the room and began to play. The other girl her age did not arrive until lunch time, as she has school in the morning. From all reports, Katie had a great day. She ate TWO helpings at lunch time...and she was very excited to report that she got to sleep on a mat beside Kate (previously she had to sleep in another room because she talked too much). Katie ate a good dinner when we got home and continued to play. Her blood counts were good today. Tomorrow she will stay with her sister at grandma's house because all of her grandmother's sisters will be here tomorrow and of course they would like to see her. The rest of the week she will be at Granny's.

Please continue to pray for us. We have decided to go the route of the 3F8 in NY. However, the doctor in NY is out of the office all week. His secretary was out today but will be back tomorrow. We are very unsure of what to do and where God is leading to us. Please pray for discernment for us. Thank you.

More News

We spoke with Dr. Russell yesterday. Katie's MIBG (soft tissue/nerve scan) results came back. It showed that she still had disease on her right hip. She has had this all along (it has been the brightest spot) but it is less bright now. The other areas have gone away. The chemotherapy and surgery have helped...just not as much as we had hoped. Right now we have 3 options. We could go to New York for an antibody therapy (3F8)...this is also being done at MD Anderson in Houston and Cook's Children's Hospital in Fort Worth but Dr. Russell was not sure the trials were open right now. The second option is an oral medication that Katie would take. The third option is more chemotherapy, although it would be a different class of drugs than she has previously received. All options are outpatient treatment and they all have different side effects...but no one can say for sure what works best in the stage of treatment we are in. William and I are leaning towards going to New York not only for the treatment but also because we would like a second opinion. It is always good to have two people thinking about things that one....please keep us in your prayers as we have to make a decision over this weekend and begin working on getting treatment next week.

Katie is doing great! She is happy and playing all the time. She has her moments where you can tell she is worried or scared but 95% of the time she is just being a kid.

Fun Times

Katie had a really good day, yesterday, with Nana and Aunt Ashley. She was running and laughing just like she did before she got sick. However, I think she must have tired herself out because this morning she was very GRUMPY!!! Hopefully she will take a nap today and feel better. We go to Houston tomorrow and have the MIBG scan on Thursday. We will most likely NOT be meeting with Dr. Russell on Thursday and instead have a speak with her on Friday about the scan results. Our next course of action depends on the results from that scan. William and I are contemplating calling MD Anderson or Sloan-Kettering in New York for a second opinion. Please keep us in your prayers...pray that we may be able to discern what is best for Katie...

Good Days...

Katie has had a good week. She has been running around like a wild woman and having fun doing it. However, today it finally caught up to her. She was tired and cranky today, even though she slept about an hour later than usual, but after a good nap her crankiness wore off and she was up and going again. Please pray for William and I, as we will meet again with Dr. Russell next Thursday to discuss treatment options. One of those options could be going to New York for a second opinion and treatment. Of course this is not what we would like to do but as I have learned through all this... my plans are NOT His plans...thank you again for all the support you have given to us during these past 5 months...it is truly a blessing.

Continuation of Good Days...

Katie, Laura Beth, & I slept a little late today (till about 8). Her blood levels were good today & she did not need blood or platelets. Her white blood cell count was up & she no longer needs to have shots every day. She of course is very happy about that! Katie spent the day at grandma's house & had a blast. Katie talked for a long time with a friend of grandma's who came over today. This is unusual for her lately. I was glad to hear that she was being a 'nice girl' =) Katie & grandma also made me a birthday cake (yummy) & Katie colored me pictures. All in all she had a good time.