Happy Day!

Just a quick note to say, "Thank you God for the wonderful day!" Katie had a wonderful day. We had to spend most of the day at TCH but that was okay. She was smiling, laughing and happy for 90% of the day. After leaving TCH we went to the Butterfly Center at the Houston Museum of Natural Science. Katie loved it. She touched a butterfly and it actually turned to look at her! I was as amazed as she was. But then it flew at her and she practically lept out of my arms! She still isn't walking much but she is sitting up more and is having less pain. AGAIN...THANK YOU GOD!!!! Tomorrow all four of us are going to Houston for Katie's last day of radiation. We are going to go to a Dream Night at the Zoo. They have special exhibits and fun things to do. It is an invitation only kind of thing so there will not be a ton of people there. Please pray that Katie is feeling good and can really enjoy herself. Keep the prayers coming because they are working! =)

Goodbye May...and Good Riddance!

Hello June! Hope you prove to be a better month than May was. Katie has been in pain the entire month of May and continues to be so. She was unable to urinate completely on Thursday night/Friday morning (she could urinate some but was unable to completely empty her bladder and it was painful for her...by Friday morning her belly was swelling again.) At first they told us that we would have to begin straight cathing her (put it in, drain her bladder, and take it out...repeat in 4-6 hours). Even Dr. Russell came by and confirmed this. About 2 hours later the urology nurse came up and told us that her boss did NOT think that straight cathing was necessary and we could put the Foley back in even though she had a pretty nasty urinary tract infection. I was very very very ticked off! I was glad that we were not going to have to straight cath her BUT couldn't they have gotten their story straight before coming to talk to me AND making me wait and worrying for TWO hours. We were lucky that Becky Elbel came by to give Katie a present. Becky was kind enough to take Laura Beth with her since Laura Beth was having a hard time being at TCH and it was going to get kind of crazy with the Foley getting put back in. THANKS BECKY.

The weekend was tolerable. Katie continued to have pain, diarrhea, and to be hard to be around. I understand why she is being rude but it is still hard to deal with...This month has been the hardest we have had to endure...I think it has been harder to deal with than the whole previous year put together. We are tired...Katie is tired and it is very hard to deal with her pain. Please continue to pray for us. In our heads we know that God has a plan for our family and in our heads we know that he is a loving God who takes care of us at all times BUT in our hearts we are wondering about it all...at times it is hard to believe in God when your precious first born child, who you wanted for so long, in so much pain. Again thanks for holding us up in prayer...it is the most important thing you can do for us.

L...O...N...G... Day

Like Tuesday...today we spend ALL day at TCH. It is crazy that the Methodist hospital can push 100 cc of fluid in her in about 3 minutes while TCH takes TWO hours to do the same amount...Anyway...Katie has a urinary tract infection from having a Foley (probably bacteria from her diarrhea). They gave her some IV medication today, took out the Foley, pumped her full of some fluid and NOW it is just hurry up and wait for her to urinate. Hopefully she will be able to urinate on her own sometime tonight. If not we have to go back to TCH tomorrow (and I am sure spend the day! grrr...and I had just made a massage appointment for myself for tomorrow afternoon!)

On to better news....William and Laura Beth are coming in tonight. I am so excited to see my monkey again! I don't talk about Laura Beth enough on the blog but you should know she is a wonderful little girl who is almost two years old... she has endured so much while in the background...

Hopefully (keep your fingers crossed) we will get to go home tomorrow and spend the weekend there. I think it will do good for Katie. Also I signed up to work as a contract therapist with BVRC again! I am very excited. I loved my job there and know that I will enjoy it again. I will also continue working for Coker Rehab (the company that I have been working with for about six months doing home health, ECI, and the Madisonville schools). They have been wonderfully flexible and an absolutely wonderful company to work with! Strangely I will be working with COTAs (certified occupational therapy assistants) who are named Jennifer in BOTH places! The good thing for me is that I love them both to pieces! They are wonderful!

Also in in the good news venue is that Katie is eating more! She is still in pain and needs the morphine about every 4 hours as scheduled BUT she is eating more and that is a good sign!

Prayer for today: Katie can urinate without pain tonight!

Better Day...

Today was a better day...though a little frustrating! LOL Katie woke me up around 4 and said that she couldn't sleep by herself anymore! So I crawled in her bed and held her as we slept...it was precious. What was NOT so precious was when she woke me up at 6 (an hour before the alarm) to let me know she just couldn't sleep any longer! I guess sleeping for 3 weeks straight finally caught her up in the sleep department! Wish I could catch up on sleep. LOL When I did get up around 7 she was hungry and despite the fact that I should not have given her anything due to sedation I gave her some dry cereal. It was the first time she has wanted breakfast. They decided that they will radiate her leg. She was not very happy, though, when she woke up and had markings on her leg...she has pretty much gotten over it. She has eaten more today and is asking for food so that is a good sign. She continues to be pretty cranky but she hasn't needed as much pain medication and has had fewer episodes of diarrhea. So all in all it is an okay day. Today, I have been able to take a nap and read some (Glass Girl is a wonderful book! It is written by Laura Anderson Kurk who is a friend of a friend. She is an amazing writer!). I also get to have a strawberry smoothie every day when at the Methodist Hospital (makes for a great breakfast!) And today I got a free chair massage! Mix that in with the Dr. Pibb for lunch and you have a pretty good day....if you take away Katie's crankiness it would have been wonderful! =)

Bad Day...

Today has been a very bad day for me. We got to the Methodist hospital around 7:30 and were headed to Texas Children's by 9 for our clinic appointment. The main discussion revolved around pain management. It was difficult to decide which medication was best for Katie and what to do. I don't like seeing her in pain and I don't like seeing her a zombie but there doesn't seem to be a middle ground. Never really thought I would have to decide which narcotic was best for my child. William is ready to give up on morphine and just give her Tylenol for the pain. It was difficult to text him (didn't want to discuss it in front of Katie so that is the best way..) and get him to understand what was going on. I was very tired by the time we left at 5! They put her on TPN (IV nutrition) to prevent dehydration and hopefully make her feel better. The home health company couldn't get the TPN to me today so we stayed for TWO hours to get 100 cc of fluid in her to hold her off till tomorrow. The good side today is that Katie has eaten more and she is trying to get to the potty in time to have her diarrhea. She even laid in bed and watched Ice Age and was laughing today. However, Katie did get awful mad when I wanted to read a book with a 15 watt bulb on when she wanted to sleep. (I need to invest in a good book light). I became very frustrated with her and yelled...I should not have but I am past the point of breaking....The other good news is that they will probably radiate her left knee and possibly her left fibula. They are beginning to think her pain is coming from the cancer in that area and not from compression of the nerve to the left leg. On Thursday they are going to remove the Foley while she is sedated and then we are going to spend the day in clinic trying to get her to urinate and also get platelets (her platelet count was low today). If she can urinate on her own then the Foley will stay out...if she can't then it will be put back in for a little longer.

Pray for today: Katie to be able to urinate easily on Thursday and peace for my mind....I no longer have patience with any thing or any one.

Happy Anniversary!

Today is William and my 7th wedding anniversary. It is bittersweet to be apart today but I am happy that I have shared these past 7 years with my wonderful husband. Last year we celebrated together but it was in the hospital for Katie's first chemo treatment. I thank God that we are at least NOT in the hospital...at least not yet. Katie has not been drinking very much today. She is beginning to become dehydrated again. We will have an office visit with the nurse practitioner tomorrow and I am hoping to get them to put her on IV fluids so that we can prevent going back in the hospital. She is tolerating radiation okay...I am hoping soon that she will be able to do it without sedation. She continues to spend 95% of her time in bed but she is staying awake more and her diarrhea is getting some better. I try to get her up to walk a couple of times during the day, much to her disapproval.

Prayer request for today: That Katie does NOT become dehydrated!

Update

Karla brought Laura Beth to see us today. (THANK YOU SO MUCH AUNT KARLA!!!) Katie wasn't really feeling up to it but she sat in the stroller downstairs while I played with my little monkey. William, Laura Beth, and Karla went home while Katie and I stayed at the Ronald McDonald house. I was so sad to see half of my family leave...but I know it is for the best. I can't take care of both girls right now by myself and William has to work (Katie is very needy right now with her pain and diarrhea and Laura Beth is one busy little monkey!). We will probably spend most of the week (if not all of it) here in Houston. IF Katie gets to feeling a little better we may come home some of it. IF not then William will bring Laura Beth and they will spend the weekend with us. Other than having radiation every day we will not have to much to do. Hopefully Katie will get to feeling better soon and maybe we can make a trip to the zoo. Please pray for Katie's pain and diarrhea to subside. Thanks for keeping up with us and praying for us!

Free at last

Hey everyone this is William, just wanted to let all of you know that we are out of the hospital and in the Ronald McDonald house in Houston. Christa and Katie will be staying here the next ten days or so while Katie is receiving radiation treatments. We are excited about being out of the hospital. Katie is asleep in her bed and is not complaining of any pain. Katie is however on morphine, but it is as needed and not constant like it was before. We want to thank all of you so much for the time you spent on your knees on our behalf. Prayers do work and if anybody says that they don't then I will call them a liar. Thanks again and God bless each of you.

Freedom!

"There is no one like the God of Israel. He rides across the heavens to help you, across the skies in majestic splendor. The eternal God is your refuge, and his everlasting arms are under you." ---Deuteronomy 33:26-27 NLT

The past two weeks have been very difficult for William and I. To be honest, this week we have felt that Katie was the closest to death than she has ever been. She probably was closer at other times but due to the pain and fatigue that she has had this week we felt death could be imminent. And I think she felt it too. We, both, have been in tears dozes of times this week. BUT we have felt all of your prayers. We have felt the 'everlasting arms' of God around us. Even in the midst of sheer terror and sadness we have felt peace at times. Katie is beginning to feel much better. I think the first dose of radiation is beginning to make some difference and we have found the right dose of morphine. We even had her up walking this morning twice...of course she was yelling the whole way (not because she was in pain but because she was ticked that we are making her walk). Of course the OT in me had to have her get up and moving...She is sleeping now from sheer exhaustion. Her body is very tired but I am beginning to see her feisty spirit come back. We are going to get to leave the hospital tonight after her last dose of chemo for this round. We will stay in the Ronald McDonald house nearby. She will have 10 doses of radiation (until June 4th). I am hoping that after a couple of doses that she can once again do it without sedation. She will have the Foley catheter in until Tuesday. On Tuesday they will take the Foley out and see if she can urinate on her own. If she can then we will leave it out...if she can't then we will have it put back in for a little longer.

That is about all the news right now. I am looking forward to seeing my little monkey tomorrow (Laura Beth)! I miss her so much when I am here with Katie in the hospital. I know that she is well taken care of when I am gone BUT I miss her! She is growing so much...my little monkey is such a busy girl!

Thank you for all of your prayers. Several times during this ordeal, William and I just can't find the words to pray...and your prayers hold us up. THANKS! You are the warriors on our side!

"Elisha told him. 'For there are more on our side than on theirs.' Then Elisha prayed, 'O Lord, open his eyes and let him see.' The Lord opened his servant's eyes, and when he looked up, he saw that the hillside around Elisha was filled with horses and chariots of fire." --2 Kings 6:15-17 NLT

Update

Please pray for us. I was trying to encourage Katie today and she told me, "I have given up. This cancer is too big for us to kill." My heart broke into a million pieces. My little girl is so tired and in so much pain. She got her first dose of radiation today and our wonderful nurse Judy got her a morphine pump. We are hoping to figure out how to get out of this place today. We will get ALOT more sleep at the Ronald McDonald house. Thank you for your prayers.

MRI Results

Our suspicions were correct. Katie's tumor is pushing on the nerves that would allow her urinate. It is also very close to her sciatic nerve which would cause her L leg pain. There is also a possibility that it may cause some problems with pooping. They are restarting her chemo today. We also will meet with the radiologist today to begin radiation. I will have to learn how to in/out catheterize her until she is able to pee on her own. Thank you for your prayers. Please continue to pray for all of our emotional health as well as Katie's complete healing here on this earth.

Relief FINALLY

Katie and I had a very rough night. I don't think I got more than a hour of sleep at a time all night. Her poor belly was so distended. The did an in/out cath and was able to get about 250 ccs of urine out. And she went once in the middle of the night about 200 ccs. Normal for her is about 200 ccs at a time. I asked for a stay in Foley catheter but the doctors refused at this time. She had her MRI this morning at 6:30. It took 2 1/2 hours to complete. While in the MRI they decided to put a Foley in. PRAISE GOD!!! Just in recovery she had almost 800 ccs of urine come out of her! No wonder why my poor baby hurt. She is very groggy and still has some pain but she is not complaining of her leg hurting anymore. I had to tell a little white lie to get her to calm down...she was freaking out about having a catheter so I told her that I took it out. She calmed down some. Thank you for your prayers...they are working! I will update once we have the results of the MRI.

Hospital Again...

Katie continued to have fever and diarrhea through the night and this morning. They admitted her this afternoon due to dehydration. They have been pumping her full of fluids and she has not been able to urinate. They are fixing to do an in and out catheter. Please pray that this goes well. Her little belly is VERY distended. She is in a lot of pain and the morphine doesn't seem to be helping as well as it use to. Her chemo was put on hold for today due to the complications that she is having, but they should start it back up tomorrow. She will still have her MRI in the morning. Please pray for my poor baby's emotions...this morning she told me "I have too much cancer to handle." Please pray that she can feel better all over. Thank you for your prayers... And thank God for the small miracles...we were able to get into a room in about an hour, catching the elevators without having to wait and my parents coming so that I could get everything hauled over to the hospital from the Ronald McDonald house.

Day 2 of Chemotherapy

Day 2 is completed...Katie is now resting peacefully in her bed at the Ronald McDonald House. Dr. Russell seems to think that the fever is a result of the tumor and the body's reaction to it BUT they took cultures just to make sure. They also gave her an IV medication that treats staph positive bacteria (the vancomycin is for staph positive). Hopefully this will cover all the bases as far as bacteria goes. They also did a chest x-ray to rule out pneumonia (which they did...she is negative for pneumonia). All Katie has done all day is sleep. And she has even been polite to all the nurses and doctors who have come in to look at her or mess with her which wakes her up. If you know my daughter at all, you know this is NOT her...she is polite but only to a point! LOL My poor little girl is so tired and doesn't feel good. She has begun to have diarrhea and gas. I am giving her medication to help with both. She has not eaten anything since yesterday (Monday) at about 3 in the afternoon. She is drinking some though. Please pray that we can get this figured out and get back to living life while she can. Thank you for your prayers.

**Side note: MRI is scheduled for Thursday at 6 in the morning! Katie will be sedated for this procedure so that they can get a good picture and she will not be traumatized by having to hold still for an hour and half (that is how long the scheduler told me it would take!)

Chemotherapy

Yesterday we met with Dr. Russell and her nurse practitioner. They are thinking that Katie's difficulty with urinating may be due to the tumor in her pelvic region pressing on a nerve. We are trying to get a MRI scheduled for this week to confirm this. Also Katie is having significant pain in her left knee. We got a new prescription for morphine. This helps Katie but it also knocks her out. She is sleeping about 80% of the time. She spiked a fever last night. Dr. Russell thinks that it is probably related to the tumor and it does not look like she will be admitted (thank goodness). We will stay at the Ronald McDonald house tonight so that we will be close to the hospital. Katie handled the chemotherapy pretty good yesterday. The oral was difficult to get down her but it was doable. She hasn't had any real side effects from it. Please pray that they can find the reason for her pain and difficulty with urination AND that they will be able to fix it. My poor girl is so sick...and it hurts that just a week or so ago she was living life to the fullest. Thank you for your prayers.

Home

Katie was released from the hospital this afternoon. She is having a very rough time emotionally. She just wants to lay in bed and sleep. She continues to have difficulty urinating and has started to have an allergic reaction to the vancomycin (severe itching on her bottom). We have begun to give her Benadryl to counteract the allergic reaction.

Tomorrow, Katie and I will head to Houston. Please pray for us because I already know that it is going to be a difficult day...a day at the clinic is never fun but there is also some logistics that will be difficult to navigate. Also please pray for Katie because she has begun to have the same symptoms that she had a year ago...she is very whiny, is complaining of leg pain, and is having trouble walking at times. We are going to request an MRI of her spine and brain to make sure that we have covered all the bases. The MIBG and CT scan did not show that the tumor is wrapped around anything or pressing on anything but her behavior is telling me that something is going on. Thank you for your prayers.

Christa,

This is a special blog just for you. I want to thank you for being so strong throughout this past year. Many people dont know the extent of the sacrifices you made. I however do. You have been so wonderful through Katies illness. I want everyone to know what you have given up. Christa has a Bachelor of Science degree from ETBU. After she finished achieving that goal she went on to earn a Masters degree in Occupational Therapy. She loves her career, but she loves her family more. This is shown through the devotion to Katie. Christa doesnt get to use her talents as an OT as much as she would like, due to having to drop everything and take care of Katie such as going to Houston because of an infection, or the multiple appointments. Christa has also lost valuable time with our other daughter Laura Beth. Christa is constantly torn between the two of them. She wants to be with them both, but it is not possible. Christa has lost many an hour of sleep over her family. Christa has always been selfless, always putting other people first, this is one reason I love her so much. Christa has cried in my arms for hours over some of the stuff she has had to do to Katie. You dont know what your made of as a parent until you have physically had to hold your child down to force chemo down her throat, all the while Katie is screaming no no no and stop it please, it is as if you violateing her. I can tell you its not easy But Christa does it with grace. She is always strong for Katies sake. Christa is a beautiful Woman inside and out and deserves to lifted up on a pedastool. I want her to know how much I love and appreciate and respect her. She is the best wife a man could ever ask for and the best mom a child could ever be given. I heard it said somewhere that God gives a child the parent that he or she needs. This has never been more true in Katies and Laura Beths case, God really knew as he always does exactly what he was doing. This also proves the verse in the Bible that says before you were in the womb I knew you. Christa, you are a mother among mothers. Katie, Laura Beth and I are very blessed to have you in our lives. God loves you and he will see you through this. Stay strong my love. Thank you for being so awesome and for marrying me and sticking with me. Have a great day my love.



Love,
William

Hello everyone,

This is William and I just wanted to let everyone know that Katie and I are still in the hospital. Hopefully tomorrow morning we will get to leave, although we are not getting our hopes up because we have already been told this twice. I ask all of you to please put Katies emotional needs at the top of your prayer list. She desperately wants to go home, and she thought she was gonna get to go twice now. It is very difficult to say if she really feels bad or if she is so depressed that its making her feel worse than she actually does. I have tried to cheer her up, but she just doesn't seem to want to cheer up. I am worried about her because she is not acting like herself. She is acting like she was about a year ago before all this mess started. Katie is exhausted and she can't get any rest in this place. Please pray also that we can leave tomorrow in timely manner. I want to thank all of you for all the prayers, thoughts, gifts, and all the love that has been given to my family and I. This has been a very difficult year for us, but all the love and kindness that has been shown to us has made it easier. I don't know how people who do not have the God of heaven in there lives make it through this, because Christa and I are both saved and struggle everyday with the trials and tribulations of this dreaded disease. I see muslims on the cancer floor and wonder how they do it, because there god is not alive and can't fix anything. I am thankful to God for our family. Our family has been so wonderful to us, they have all sacrificed a lot to make sure we have everything we need. Our family has been there when we needed a shoulder to cry on and they have been there for rejoicing as well. I am also thankful for our church. Harmony Baptist church may be small in number, but it is big in love. Christa and I want our church to know how much we love each and every member. I am thankful for the friends and the strangers who have shown us support this past year. God gave each and everyone of us who believe in him faith, hope and love and the greatest of these is love. This scripture has been proven to me over and over again this past year, and it has been proven through each and everyone of you. Thank you and God bless you for everything.

PICC line placement

Katie had her PICC line placed this morning after much confusion and difficulty. They originally had her scheduled for nurse sedation. I had told them yesterday that the medication used with nurse sedation did NOT work because it causes her to RAGE for over an hour. So we were once again brought back to our room to wait and Katie still was not able to eat. After much 'discussion' we were scheduled for the procedure with general anesthesia. Katie is now finished with the surgery and we are back in our room with daddy and Laura Beth here. Katie is feeling some better. Thank you for all of your prayers.

Fever Update

Katie made it through the night without any fevers and without any more Tylenol! Thank you Lord! God heard your prayers and answered them. Thank you to everyone who prayed for Katie. She slept most of the afternoon and through the night okay. She woke up every couple of hours to go to the bathroom (still having diarrhea) but other than that she slept. We are now waiting for the PIC line placement. She is supposedly the first case and should to at 8...I hope. Thank you to everyone for all of your prayers...

A Year....

"The Lord who created you says: 'Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters and great trouble, I will be with you.'" --Isaiah 43:1-2 NLT

Today, May 14th, marks one year since we were told the news that Katie has cancer. One year ago today, I lay in a hospital bed with my scared little girl beside me and heard the news... Stage 4 High Risk Neuroblastoma. That is a lot to take in...I remember that Katie wouldn't let me leave the room...she was in so much pain and so very scared. A lot has changed in the past year...and a lot has stayed the same. It has flown by so fast...it is all a blur, yet it feels like it has been five years instead of one!

I sit here wondering, "what have you learned from all this...what has the point in this last year been?" Well I have learned a few things...

1. Money does NOT matter. I have always been somewhat focused on money. Now I know God will take care of the finances...the generosity of our community has been overwhelming. Also, I would recommend to ANYONE that they should get an AFLAC cancer policy. God definitely had a hand in me signing us up for that. Because of your generosity and AFLAC I have not had to worry about not being able to work...instead William and I have been able to focus on our family and how to get us through this.

2. Worrying over little things does not matter. When I look back on what I disciplined my daughters for before cancer I laugh. Really did it matter that my 1 year old couldn't be quiet in church? For goodness sakes why did I even try? Did it matter if she got her clothes all dirty while playing? Nope. Why oh why did I let those little things get to me. Sometimes I think that maybe the purpose for all of this is to remind me that my daughters are a precious gift from God and I should NEVER take them for granted.

3. Rejoicing in the little things DOES matter. What matters most is that my 4 year old and 1 year old get to play together...yell at each other and fight with one another. What matters is that my daughters get to laugh together. What matters is that Katie gets to plant a garden or take a bath and that I get to be there for all of it...that is what matters.

4. Family and friends are important...We are so grateful for our families (parents and siblings, as well as extended family) because they have really stepped up to the plate to help us. Each family member has really done their part in helping us get through this year. In addition to our family we have been blessed by wonderful friends and an awesome church family who have prayed for us, provided us with meals, given the girls' gifts and gave us a shoulder to lean on. We appreciate all of you so much!

5. God will carry us through this. Oh don’t get me wrong…there are many times that William and I have not been able to see God in all of this. But when I look back I can see that He was always there taking care of us. Many times I have felt that God was far away…but in my heart I know that He is taking care of my little girls. I still struggle with the ‘why’ of it all. I see people every day that do not care about their children or who abuse them…and I think why can't that child have cancer instead of Katie? But I know that God’s will will prevail. It is just hard to accept it at times.

When I look back over this year I see some great accomplishments...and some great sadness. Katie has been through so much...She has had 11 surgeries (that doesn't count bone marrow biopsies), 9 rounds of chemotherapy, 12 days of radiation, approximately 90 days in the hospital, and she has undergone NUMEROUS tests. And through it all she has been so brave...sometimes it is hard to remember that she is only 4 years old. Especially with the vocabulary that she has! I am saddened by what I have lost this past year...I lost a great deal of time seeing my little 10 month old grow into a 22 month old. And I missed getting to see what a normal 3 & 4 year old Katie would have been like. And my girls missed getting to grow up together a lot of this past year. I am also saddened by what I have gained....I have gained the ability to think about death...Before May 14, 2009 I would have never dreamed of thinking about the death of my daughter. I would not have had to wonder if I should bury my little girl with her white blanket and Jessy doll (they go everywhere with her) or if I should keep them so that I have something to hold onto while I grieve for her. I would have never wondered who my youngest would look up to if her sister wasn't there. Laura Beth wants so very much to be just as 'big' as her sister and do all the things that Katie can do. When I see them walking together hand in hand or playing together...even fighting together, I now think...this could be the last time. Oh I have hope that God will heal Katie. William and I have been fighting for her healing all year BUT there comes a time when you have to come to grips with the fact that her healing on this earth just might not be in God's will. And that makes me angry...I see how much she loves to learn and how much joy she gets in learning about God that I just can't imagine how it would do anyone any good for her to not get to grown up. It is very hard to let go of the dreams and hopes I have for her...I want to see her grow up, I want to fight with her when she is a teenager, I want to worry about her when she is on a date, I want to be there to talk with her about her first kiss, I want to be there for her graduation, her marriage, and the birth of her children. I WANT to see her grow up....But for now I just hold onto the hope that we can make it another year...

Fever...

Katie spiked a fever of a 101 about six tonight. They did a blood culture (fresh stick/poke) and are ordering a urine culture. We also changed the dressing on the site where her port was removed. As you can imagine, she was VERY upset. She is also having very urgent (RIGHT NOW) bowel movements. This is most likely due to the antibiotics but I am not sure. Her blood pressure was okay but her heart rate was high when they checked it earlier. I am praying that her infection has not gone septic (all over her body).

Prayer request for today: Katie's fever goes away and we get to go home tomorrow.

Bad News

We will NOT be going home today. After we got all packed up and ready to go the doctor came in and told us that a bacteria has begun to grow in the port that they took out of her. The ONLY way to treat this bacteria is IV antibiotics. Our choice was to either to stay for 5 more days for IV antibiotics or have a PIC line put in and we can go home tomorrow on IV antibiotics. After much screaming, yelling, and throwing of objects we decided to have a PIC line put in. BUT OF COURSE THEY CAN'T PUT IT IN UNTIL TOMORROW. So we will spend another night in this stupid hospital. A PIC line is similar to a central line but it is more temporary (it is designed to last only for a couple of months.) We hope that this will work out better than all the previous stuff.

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.***