Bone Marrow Registry

I received some information on joining the bone marrow registry for free from a great family we met here at Vanderbilt. AJ Revera was also being treated here and received a bone marrow transplant that saved his life. He is doing fine and getting more healthy everyday. Please visit AJ's blog at http://ajrevera.blogspot.com/2009/11/day-115-please-join-registry.html and pray for the rest of his recovery.

I know a lot of people don't understand the process of having a child with cancer. Some may think these children get sick, go to the hospital, have chemo and there good. Of course it rarely works this way. I wish it did. Just in the four months we have been here, we have got to know other little children who have went through a course of chemo (usually lasting four to six months) just to relapse some time later and have to do the whole course again. We have even met a child that at four years old has spent their whole life in and out of this hospital having several courses of chemo and marrow transplants.

In Lyric's case, being so unique, we do not have an exact plan for treatment like the other children have. She is treated one round at a time and re-evaluated. In all actuality, we have been told, if everything goes well, this may be a five year treatment, including courses of chemo and clinic visits. We have no idea if a marrow transplant is in her future or not. It still may be. If at any point it is, then that changes everything. Sadly a patient I met our last round, died a week ago. This patient had been treated for about three years, coming and going, even receiving a transplant. And just like that....gone.

This is an unbelievable roller coaster of emotions. All these families have dealt with times they believed everything was going to be fine and next thing you know there not. A bone marrow transplant in most cases, is a last resort, the only option left. Some patients don't have a match and may die waiting. Like I said, we don't know if a transplant is in Lyric's future or not. If things take a turn for the worse, I know I would want more than anything for her to have a bone marrow match. In more cases than not, the match is a stranger some where else in the world.

AJ has a Christmas wish to get at least 100 people to join the registry. It is free from now until the rest of the year. Please help him reach this goal. The National Bone Marrow Registry has set up a special link to help him reach his goal.
Here is how to do it:

1. Log on to http://join.marrow.org/ajchristmaswish
2. Follow the directions.
3. They will send you a packet to complete and swabs for your cheeks.
4. Mail it back. You are one the registry. It is easy.

AJ's brother, Austin is only 5 and he did! So can you! Remember you can help save a life.

Second Thanksgiving Dinner

Lyric enjoyed a second Thanksgiving dinner with all the fixen's delivered from her great grandma, Mi Mi Singleton and aunt Jamie. With all this good food today it will be hard to get her to go back to eating the hospital food. Thank you to the Singleton family.

Thankgiving Thank You's

I want to thank Greg & Ciny Revera for providing our Thanksgiving dinner, it was a surprise and a blessing. Lyric has some turkey, potatoes and gravy, stuffing, and even ham. Lyric also received a new stuffed singing toy from the Revera's freind Dianna that she loves. Thank you Dianna for bringing it.

I would also like to thank those that have never stopped praying for Lyric, who call, leave comments and email, sometimes every day with concern for her. It means so much to us. It's not easy being in this hospital every day, sometimes not going outside for as long as a week and seeing your baby go through so much. What has amazed me the most is the people who I didn't even know that well before she got sick, that have supported us any way they could without even being asked. Thank you.

Large Volume Blood Transfussion

Lyric had to have a blood transfusion this morning. Normally if she has ever had to have one, it would only take 30 min to an hour but the Dr.'s decided to give her a high volume transfusion today to help her numbers stay up where they need to be due to the aggressive chemo she has received this round. This transfusion took a little over four hours, causing her to not feel real well and not have such a good day. Although she has finished the chemo the round continues during recovery, which has been a rough one. You can see that this new chemo is taking a different toll on her.

Goofing Around

Lyric was just having a little fun tonight. She is off her chemo pump for several hours today so she spent a lot of time in the halls and playroom. This is going to be a long round through the holidays so it will be tough. Not much news to report. Tomorrow should be her last dose of chemo this round. Then we wait for her numbers to bottom out and recover. I think it will be a long wait.

Getting Sick

Lyric vomited twice this morning. First time in a while. She has also been more tired lately. The new chemo is really strong. She has lost most of her eyebrows and her eyelashes are now falling out. I am thankful that this round of chemo is only six days long. Her recovery will keep us here the longest. Please pray for Lyric to get through this round fine.

New Chemo

Lyric started her new chemo tonight. This drug is very aggresive and will really wipe her out. Recovery could take as long as 4o days. Since this chemo could possibly lead to heart issues for Lyric later on, there is a lifetime limit that will have to be kept track of. Once the limit is reached that's it. The Dr.'s doubt she would ever reach that limit, never the less it's still a pretty serious drug.

Round Four

After arriving at the hospital we received some great news. It appears that the results from Lyric's second procedure confirmed the Dr.'s suspicions. What was first thought to be the Leukemia becoming more aggressive and no longer reacting well to the chemo was just her marrow kicking out what was left of the Leukemia cells. She is still reacting well to the chemo and will continue on with the same treatment. We checked back into the same room we had for the first two rounds and started round four of her chemo. This round will be aggressive with a new chemo drug added. The Dr.'s told us that this round will really wipe her out. Including recovery time, we may be here for 40 days if everything goes well.

Recovering Fine

Lyric came through the procedure fine. After recovery, we will go home for the weekend and be back around Tuesday to be readmitted for the next round. We should hear some results from the marrow biopsy on Monday or Tuesday. Please keep Lyric in your prayers.

Back For Procedure

We are back at Vanderbilt for Lyric's second bone marrow biopsy in a week. Hopefully this will bear good results. She will have this procedure to sample her marrow and compare to last weeks biopsy. The Dr.'s suspect that since Lyric's situation is so unique, the first results may not necessarily be that accurate. There is a chance that her marrow may have been kicking out whats left of the Leukemia cells and that's what may have recorded on the results. Were praying this is what's happening. If so than we will be back Tuesday to be readmitted for round four of her chemo. If it's not what's going on, then we will have to sit down with the medical team and reevaluate her treatment.

Waiting For Next Procedure

We have just been trying to relax and enjoy some time at home. Lyric will have to be back at Vanderbilt on Friday to have another procedure so we can get a better idea what is going on, whether the Leukemia is not responding well to the chemo and getting more aggressive. In the meantime we let her get out just a little and enjoy the the front yard.

Bad News - Leukemia Is Back

Word came back tonight that the results from Lyric's procedures, performed earlier had bad news. Even Lyric's team of Dr.'s were surprised at what came back. Two different tests are done on the marrow taken during her procedure. One test is showing a 3% Leukemia cell presence and the other is showing 7%. It appears that her body did not react well to the third round of chemo and the Leukemia, being aggressive is fighting back. Some of the confusion comes from that fact that no team of Dr.'s has ever dealt with her kind of Leukemia. Because of this Lyric will not be starting round four of her chemo as planned. Instead the team will be performing the same procedure's during surgery again on Thursday or Friday to get a second look and in the meantime we will go home a wait it out for a week. This is the first time we are sent home with bad news. It will be a tough week. After her next procedure results come in we will have to sit down with the team and have a serious discussion about Lyric's course of treatment. The results may change everything.

Recovery

Lyric came through her surgery fine. After recovery she will go back to her room and and finally have something to eat. Later tonight she will start her fourth round of chemo. We are now half way through this course of treatment. Half way as long as things keep looking good. Of course if we run into any issues it may change her treatment. The Dr.'s are also anxious to know the outcome from her procedures and may press the lab for quicker results.

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Ready For Surgery

Lyric went to the O.R. early this morning gripping her baby doll. She will have

a spinal tap and bone marrow aspiration. These procedures will tell us how well she is reacting to the third round of chemo. After the first and second rounds the procedure results came back that there was no presence of Leukemia in her marrow, blood and spinal fluid. We are hoping and praying for the same. We should get results whiten a couple of days.

Visit From Vanderbilt Cheerleading Coaches

From right to left: Pam, Jason, Lyric & Valery

Lyric had a special visit tonight from the Vanderbilt University Cheer leading Coaches, Pam, Jason and Valery. We met the coaches at the Nashville's 2009 "Scrubs For a Cause" event last week. After hearing about Lyric, they just had to meet her in person. The visit means a lot to us and Lyric really enjoyed it. Thank you. For more information on the Vanderbilt Cheer leading Team, visit www.vanderbilt.edu/cheer

4th Round Starts Friday

The Dr. told us today that Lyric is schedualed to have a bone marrow aspiration and a spinal tap procedure on Friday morning with chemo starting Friday afternoon or night. We won't go home inbetween the end of the 3rd and the beginning of the 4th round but this is fine, I want to just get going on the 4th. Maybe by Monday we will have results from the procedures and will know how well she reacted to the 3rd round of chemo.

Finally Out of The Room

At about 10:30 PM tonight the nurse came into Lyric's room and announced that Lyric was not off precautions for her cold and she was now aloud to leave her room. We put Lyric on the floor and opened the door. She couldn't get out fast enough.

Still Waiting

Not much news today. We are still confined to the room since Lyric has a cold, although she has no symptoms. We have been waiting a while for culture results to let us know if the antibiotics have killed the cold or not. Lyric was supposed to start round four of her chemo tomorrow but we are not sure now if her numbers will be good enough. They may postpone it for a week.