Sleeping While Eating

We were told today by the Dr. that Lyric's procedure for her spinal tap and marrow aspiration are postponed until they can figure out exactly what is going on with her ptt numbers. Ptt numbers measure how long it takes to start to coagulate. Like I stated before this has them baffled since she is Factor 5 which means she clots easy. As soon as they can figure it out they will set up her procedure. Otherwise Lyric has been riding around the nurse station in her wagon, playing with the nurses, having visitors and eating well. As a matter of fact she had a pretty good lunch and fell asleep when she was full enough.

New Guestbook

We have got Lyric's new Guestbook set up. To read the messages & sign and leave one yourself please click the Guestbook banner found on the Right hand side of her page. We love getting everyone's messages and are saving them for her. We appreciate everyone of them. Thank you.

Chocolate Milk

Lyric woke up late this morning so instead of breakfast we had lunch. She ate Spaghetti O's, tater tots and apple sauce. She then drank a whole carton of chocolate milk. She obviously has her appetite back. I think we are seeing answered prayers. She is weighing just over 20 lbs now. She is in a great mood this morning.

Bath Time

Tonight Lyric took her first real bath since we have been at the hospital. We had to put a special bag over her Hickman line in her chest so that it does not get wet. She had a blast playing around.

Eating Well & Gaining Weight

Lyric is up and in a good mood today. It seems that she has put on about a pound and a half in just a couple of days ever since she was taken off her feeding tube and put on IV nutrients. This morning we took a spin around the nurse station in her wagon and then settled in for lunch. She had hot dogs & fries and enjoyed throwing the rest when she decide she was done.

Being the weekend there won't be much news, however a separate Dr. than the one who had told me about the genetic dilemma did approach me to make sure I was aware that they have not found any documented case of AML Leukemia like hers. I was told that the main Dr. at some point would be publishing a journal specifically on Lyric's case so that if and when the medical world stumbles across a like case there will be some documented information about it. I was also told that Lyic is the first patient to receive certin testing to determine why if she is Factor 5 (dangerous clotting) but has developed inhibitors that would cause her to have high ptt counts (take to long to clot). This is hard to understand. Trust me, if the DR.'s are confused there's no way I am going to understand it. We should have some new info next week some time.

Dancing

Here is a video we took of Lyric one night in the hospital before she lost her hair. She was dancing to her Pa Pa Frizzell's Music while eating a cookie. She can't even hear a jingle on the TV without stoping to dance a little.

Pictures From Home: Peeking

I will be posting old photos and videos here and there from before we were in the hospital. Everyday Lyric, Hayden & Kaleb would see me working at the drawing table. Hayden and Kaleb would normally go about there business playing but Lyric was hard to keep away from the table. She would always come crawling over and peek up from below. She would wine until I finally picked her up and sat her in my lap as I worked. I have done several portraits with her in my lap. On occasion I would even let her hold the pencil and scribble a little in the hair of the person I was drawing. She has never gotten credit for helping with those portraits though.

One Of A Kind

Lyric is now fast asleep. We will not be going to the OR today for her procedures. There is some issues with her ability to bleed and to clot. Until they can figure it out we won't be going. It will probably be Monday. Lyric is definitely a one of a kind. I just finished having a talk with the Dr about a couple things going on with her. Some time back we found out that she is Factor 5, meaning she has a tendency to clot. Today the Dr.'s are baffled as to why she has developed some inhibitors causing her to bleed even though she is Factor 5. They will be working to get that straightened out in order to have the procedure on Monday.

Besides the diagnosis of Leukemia, we have heard the most shocking news to date this afternoon and don't quite know how to take it. The fact that Lyric is so young and is diagnosed with AML Leukemia, which happens to be aggressive on top of it is very rare. But it appears that Lyric is the only known case of AML Leukemia like hers. Since around 1980 and the advent of cell genetic studies, Dr.'s have been studying and documenting Leukemia cases in medical journals. When a child is diagnosed with AML the medical team takes a closer look at the genetics of the Leukemia cell to determine what kind of mutation occurred. Once they have determined the mutation they are able to compare it to like cases and give the patient a road map for treatment and a % of recovery. These are the genetics we have been waiting weeks for. Today we were told that there is no other documented case of AML like Lyric's. In this situation they have nothing to compare her to. We will have a meeting with the medical team next week with more details until then Monday's procedure will be very important. The bone marrow aspiration they plan to do will tell them how well her marrow has reacted to the first round of chemo and determine if she will have a second round or divert to a bone marrow transplant. We would love for everyone that can to pray specifically for this issue. As you know you tend to fear the unknown and in this case there is no information you can even attain to learn from, no questions you can ask. They just don't know at this point.

Our Lyric is definitely a one of a kind.

See & Talk to Lyic On Skype

We are now using the Skype service for anyone who would like to see and talk to Lyric by video. It's a free service. All you need is to download the free software at http://www.skype.com/ and a computer video camera, you can purchase one for as little as $10 to $20. This service is a video conference call and is completely free. We have already used it for Lyric to see her siblings and she loves it. Sign up, search for Corey Frizzell and add us as a contact. You may find me as corey.frizzell on Skype. Talk to you soon.

Day 30 Plasma Transfussion

Lyric is supposed to be having a couple of procedures today. She is due to start her second induction or second round of chemo but will not due to her Nutra Fill numbers still being to low. Within your blood cells are found white blood cells. The white blood cells are broke down to various kinds of white cells, each having a different job. The Nutra Fills are white cells that kill bacteria. They actually are the cells that form puss. Essentially, when your Nutra Fills are low you have a week immune system or none at all. We are probably looking at starting the second induction around day 35. Lyric will however, have a spinal tap and a bone marrow aspiration today. The marrow aspiration is to see what her marrow looks like after her first round of chemo and a couple weeks of recovery. We have been told that if she looks like the marrow has reacted well to the first round than she will start the second on day 35. If not than they will start her second round immediately weather her Nutra Fills are where they need to be or not. What this has in store for her I am not sure. At that point they will also be looking more seriously at a bone marrow transplant. Her ptt numbers were a little low this morning also which makes her blood clot to slowly. So they have started her on a plasma transfusion to help that number be where it needs to be. Once that looks good we will go to the OR for the procedure.

Two Princesses Visit A Queen

Lyric had two special visitors today while we were gone. Miss America 2009 Katie Stam and Miss Tennessee 2009 Stephanie Wittler came to the hospital and spent a moment with Lyric. While vistiting Lyric tried to break Miss America's crown. However they signed a couple of photographs for her.

"Frizzell & Friends" Commercial For Lyric

Aunt Jamie Stallings stayed with Lyric today as Crystal and I went to be a part of something very special. Uncle David Frizzell, Jimmy Fortune and Dad (Allen Frizzell) wrote a great song for Lyric called "Sweet Lyric Alana" and performed it along with Grand Ole' Opry star, Helen Cornelius during the filming of a comercial which will air as part of David's "Frizzell & Friends" concert series on the RFD-TV Channel. On the series David teams up for performances with several legends of Country Music like Merle Haggard, Crystal Gayle, Jimmy Fortune and many others. Crystal and I were asked to be a part of the commercial and speak about Lyric and her fight with Leukemia. We are very honored to be a part of this and appreciate everyone coming together to help. It means a lot to us. You may catch the commercial during the airing of the "Frizzell & Friends" concert series on September 7th, 2009, Monday 7:00 PM CSTon RFD-TV, Comcast channel 136, Dish channel 231 & Direct TV channel 345. For anyone interested out of state, please check with your local cable subscriber for RFD-TV.

http://www.rfdtv.com/

http://davidfrizzell.com/news.htm

http://allenfrizzell.com/introduction/

http://jimmyfortune.com/

http://www.helencornelius.net/

White Board Lyrics

Just a little message on of our favorite night nurse's left on our white board.

Thank You, Picture This Gallery

We would like to sincerly thank our friends, David & Beth Bennett of "PICTURE THIS GALLERY" for framing Lyric's portrait. This portriat was created by her daddy, Artist Corey Frizzell for her hospital room.

Picture This Gallery

1035 Pond Switch Rd

Dickson TN

615.587.8895

Bouncing Off The Walls

Lyric is still up not wanting to go to bed. She has been just standing in the middle of her bed laughing and yelling.

Lyric Pull Out Feeding Tube...Again

I guess since she is not using her feeding tube but only IV nutrients right now, Lyric decided she didn't need it anymore. So She pulled it out. Now when she goes back to it (probably next week) we will have to insert a new one. She just stood there so proud and free.

Visit From Big Brother Kaleb

Lyric got to finally see her big brother Kaleb tonight. She was very happy. He made her a get well card in Sunday school. Kaleb said that the reason she was sick was because she missed him.

Great Mood

Lyric is in a really good mood this morning. Laughing, playing and talking. We still cannot leave the room but she enjoys sitting in her wagon just to get out of her bed.

Sleeping A Lot

Nothing major to report this morning. There is usually not much going on here on the weekends. Lyric has been sleeping a lot today. She has had only 2 diaper changes with diarrhea. a substantial difference compared to earlier in the week. Lyric will be 11 months old tomorrow. I have heard that during recovery in between chemo treatments, if the patient has good enough numbers (blood cells) they may get to go home for a few days to a week. We don't even know if this is in the cards for us but it would be great if we were home for her 1st birthday. If so we will have the biggest birthday party possible. Keep praying.

Hunger Pains

Lyric has had an ok morning. She has been a little grumpy. My guess is she's wanting something in her belly. Even though she has not ate much the last couple of weeks she will still have a little here and there but now that she is on IV feeds she has had nothing since yesterday at 4 pm. She will more than likely be on the IV feeds for a week before going back to her feeding tube.
One good thing is, she has had no diarrhea or vomiting today. She usually has had several accidents by this time of day. They put her on a medicine finally to help with the diarrhea and with no feeding tube there is nothing to throw up. She just fell asleep for her nap.

Bone Marrow Drive on The 26th

We met some friends, the Revera family while being here at the children's hospital who have recently been blessed enough to be discharged. They have sent word that there will be a bone marrow drive on the 26th in Brentwood, TN.

The address is 5250 Virginia Way; Brentwood, TN 37027 from 9am – 2pm. It normally costs people to join the registry, however he called the number and they told him that this drive was a sponsored drive, so they are accepting donations, but people do not have to pay.

Here is a link to their site: http://www.marrow.org/JOIN/Join_in_Person/drive_details.pl?drive_key=070-4-06398

Mr. Revera told me that anytime someone asks him how they can help, he tells them they can pray and they can get on the registry to help other children. I thank him for the information and if anyone in the Nashville area is interested, please check it out.

Quarantine

Lyric is not having the best morning. She has vomited twice and had diarrhea several times. The Dr.'s have put her on a no contact quarantine which means she cannot leave her room and anyone who comes in the room must ware gowns gloves and masks. This is because they can't figure out why she is having the diarrhea and vomiting and they don't want it to spread to any other children playing in the halls.

They have also decided to give her stomach a break from the feeds and put her on IV nutrition. This will eleminate vomiting since it will be directly in her blood stream.

Crystal Inserts New Feeding Tube

The nurses came in and said it was time to insert her new feeding tube (Third time). They really wanted Crystal to do this one, feeling she needed to see that she could handle it. Lyric of course was pretty mad but Crystal did great and inserted it right away. Just in time for her feeding.

Replacing Feeding Tube

Lyric is still having pretty bad diarrhea and vomiting. They have tested her for everything and can't figure out what is causing it yet. They may have to quarantine her to her room only until they figure it out. That means not wagon rides around the pod until we know something. While the doctors are trying to figure it out they are going to try switching her feed formula to see if that may me causing it.

Unfortunately she has vomited out her feeding tube again today. She will have to have it replaced in a few hours for her next feeding. They usually take her to a treatment room on the other side of the pod so she doesn't associate these things with her room. Even though she is about a hundred feet away behind a door we can still hear her screaming and crying when they have to put the tube back in. This time they want us to do it so that we know how to insert it in the event that we get to go home at any point in treatment and need to do it. We should be doing it in a couple of hours....this will be hard.

Losing Hair, Blood Clot, Skin Biopsy and Diarrhea

Lyric has finally lost the bulk of her hair. The interesting thing is, it kind of fell out in a way that looks like she had a haircut. She is still so beautifully.

She had a second ultra sound on her right leg to get a look at the clot that was caused from the blood dialysis catheter the first week we were here. News has come back that it isgone completely. During this process the Dr.'s have discovered that she has "Factor 5" which means she clots easy. They now want to check Crystal and I to see if one of us has passed this on to her genetically. Finding out would just be beneficial to one of us in case we ever needed any major surgery. That way they would know and could prepare for it.

We have also received news that Crystal and my blood test results have come back. Neither one of us is a match for a blood marrow transplant. We still do not know if a transplant is even an option for her treatment. The Dr.'s want to meet with us and have a discussion about this later in the week. We should know then if it is part of her treatment and where they will look for a donor.

Test results from the skin biopsy taken last week finally came back also. As soon as she broke out in the first rash, they immediately started her on several antibiotics. It now appears that by the time the biopsy was done the antibiotics took enough effect that the lab cannot identify what exact kind of infection she had. They do believe though that itwas a blood infection from bacteria that she normally carries. Since she has no immune system from the chemo right now the bacteria caused the infection. It has now almost completely receded. The second rash she had was a reaction to one of the antibiotics but it is now under control also.

Other than that she has had her good days and her bad. We have been battling diarrhea for a few days. Yesterday she had to have been changed 12 or 13 times...all pretty bad blow outs. I feel bad for the stuffed toys in her bed. (She will probably be mad some day when she reads this).

6A Pod Buddies

Lyric hanging with some of her new buddies on the pod.

Thank You

We want to thank everyone for their continued support, love and prayers. We have received the most wonderful messages and prayers from people all over the world. The prayer chain has reached far and wide. Please keep it going. I believe we are seeing answered prayers in Lyric everyday. Big and small. I would like to thank Crystal's family, my family and our neighbors for the day to day help. You have been wonderful. We don't know what we would do with out you guys. Thanks you. If anyone has a website or social page and would like to add a graphic banner linked to this page please feel free to do so. Just copy the code below and add the html to your site. The banner looks like the photos attached to this journal entry. Thanks.

A Few Hours of Freedom From Tubes & Machines

Lyric has been doing fine getting to be off her machine for a few hours a day and getting to ride her new red wagon around the pod. There probably won't be any news for a few days. She is now going through a recovery period after her first round of chemo. The chemo kills all the cells good and bad and in turn also wipes out her immune system. During recovery her body will build the cells back up. This can take 3 or 4 weeks, it just depends on her body. Once she does she starts her second round of chemo.

Personalized Plate

No new news to report today. Lyric has just been enjoying her time off the machine today riding in her new little red wagon with her buddy. Daddy had to make her her own personal licence plate.

Finished With Portrait

I feel like I am finished with the portrait of Lyric for her room. Check it out. We will also be doing something special with it. Stay tuned.

Visit From Mi Mi Singleton

Lyric had one last visitor from her great grandmother, Mi Mi Singleton. Mi Mi has been making sure Lyric's mommy and daddy are eating good. Lyric had fun spending time with her as daddy ate.

Special Vist From Statler Brother, Jimmy Fortune

Lyric had a special visit from Jimmy & Nina Fortune tonight. Jimmy was a member of the great Statler Brothers. Lyric did a little dancing for Jimmy as he sang to her.

Special Gift From Uncle David & Aunt Jo Frizzell

Lyric has had several visitors tonight. Uncle David & Aunt Jo Frizzell stopped by and brought Lyric her a doll that she loves and her very own little wagon to ride around the pod.

Making Laps at 3:00 AM

Lyric just did not want to sleep last night. I had to put her in her little car and give her a spin around the nurse station several times until she was finally tired enough to go to bed at about 3:30 this morning. She woke up in a good mood about 8 and ate some pancakes, eggs and cream of wheat. I feel like prayers are being answered and she is getting her appetite back. After eating she was able to be off her machine for a few hours so we played on a mat where she had some freedom to move.We are still waiting for full diagnosis results, an answer on what kind of blood infection she has, whether her rash is an infection to antibiotics and if the Crystal and I are a possible bone marrow match. Hopefully some of these questions will be answered next week.

Done With First Round of Chemo

Lyric is done with her first round of chemo. She now will go through a recovery process where her blood cells will build back up. The length of time all depends on her. It may take 3 or 4 weeks. After her recovery she will have her second round of chemo. 10 days straight. Late last night I noticed the first small clump of hair came out into my hand. We know it will happen but it is still hard to see. Her hair is thinning out. This morning she was in a great mood. She got a visit from cousin Justin and was playing. Today is the first day she gets to be off the machine for about 4 hours a day. We let her crawl around on a mat. She's having fun today.

Giving Blood For Lyric

Tonight Crystal and I finally had our blood drawn to see if we may be a match for a bone marrow transplant. This does not mean that she is having one. We are still waiting for some diagnosis results that will determine if having a transplant is part of her treatment. Also, still waiting for results on the skin biopsy to tell us what her infection is. Yes, giving blood hurt!!!

Spinal Tap & New Rash

Lyric had her 3rd spinal tap surgery today. She is fine and is still sleeping. When she wakes I am going to try to get her to eat something. She has not ate since midnight. Right now she is getting nutrients using her feeding tube. She has broke out in a new, separate rash. The infection team has been in and out all day looking at her. They believe that this is a reaction to the antibiotics she taking for the first infection. Still no word on what type of blood infection it is. Hopefully tomorrow.

Creating a Lyric

Lyric finally went to sleep about two hours ago. Now I can't sleep. Been up working on a portrait of Lyric for her room. Just felt moved to do it. I have moved my art table into her room. I have work I need to be or should be working on but just felt I needed to get this out. Here's a sneak peek so far.

Spinal Tap Cancelled

Lyric did not have her spinal tap surgery today. After waiting several hours we were sent back to the room. Her PTT count was to high and never dropped enough to do the surgery. This is the part of the blood that helps it to clot and of course they won't perform any surgery if her blood won't coagulate. Once back I spent the next couple of hours trying to get her to eat. Although she was hungry, and you could tell she was, she just has lost interest in food. She slept about 30 minutes, then we went for a spin in her favorite car. They will try the surgery tomorrow. I also did not get my blood drawn and tested today. That may also be tomorrow.

3rd Spinal Tap & Bone Marrow Matching

Lyric is having her spinal tap surgery anytime now this morning. We are just waiting for the team to take us to the OR. They will sample the spinal fluid to test for the presence of Leukemia and also give her a round of chemo in the the fluid. We pray that this sample will come back "clean" so that she will be in remission in that area. We have also been told that Crystal and I will have to give blood today for testing. They want to see if we might be a match for bone marrow testing. They will do it right in our room and take several tubes of blood. I hate needles and won't be able to scream or cry because Lyric will be looking at me.

Riding Around The Pod

There hasn't been much news in two days. Lyric is slowly feeling better since her skin biopsy. She slept a lot today but has ate some and has been playing the rest of the night. She loves to get in this little red car and go for a ride around the pod. We figured out that 26 laps around this pod equals a mile...we have done it twice over the last two days. Tomorrow morning between 10 and 12 PM Lyric will have her spinal tap surgery. Hopefully if the results from this tap come back clean than the Leukemia will be in remission, at least in her spinal fluid. We then have to concur the Cancer in her blood and bone marrow. We may also get the results back tomorrow on her skin biopsy. If not tomorrow then maybe Tuesday. Once we know what kind of an infection were dealing with, they can better treat it.