Valerie Lopez-Robinson

Thomas Stone Swim Team Tee Shirts

2007-01-08T10:57:00.000-05:00

The Thomas Stone swim team will be selling t-shirts to raise money in Valerie’s name; all profits will be donated to the Make-a-Wish foundation. The t-shirts are sizes S – XXXL and are $11.00 for short sleeve and $14.00 for long sleeve, with $1.50 added for each size over XL. The t-shirts are Royal Blue with Gold lettering and on the front of the t-shirts is STONE SWIMMING and on the back is We Swim 4 Valerie. I’ll be taking pre-orders for the shirts until February 1st, and then the orders will be available to be picked up from Thomas Stone after February 15th.

Please make checks payable to Thomas Stone High School and send to:
Katie Hunt
300 Willow Lane
La Plata, MD 20646
Please email me at khunt@ccboe.com if you have any questions. Thank you!

Valerie's Letters

2006-10-31T15:35:00.000-05:00

Hello everyone,

For everyone that was unable to attend Valerie's funeral service, she wrote a letter to Thomas Stone and to everyone who knew her. She also wanted to make sure everyone had a smile on there face, by causing someone to hit the fire alarm during the service, the wrong song being played and her slide show of pictures was cut 3 pictures short. Even with all the bloopers, the service was beautiful. I was so amazed to see how many people came to show their respects. Valerie touched so many lives in the short 16 years she was with us. So many people have sent me e-mails telling me that I raised a beautiful person, and that she was so kind and giving because she was raised around that. Well I guess that could be true, but I think Valerie had a natural gift of giving. Being around her made you become all that she was. So my point is that she made me the mother I am, not me making her the beautiful person she was. To know Valerie was to love her. She once told me she wanted someone to love her, when I would not let her date yet. She was so modest that she did not see how many people loved her. I hope she saw that, while watching down on us during her service.

Here are her letters to all of you.....

Dear Thomas Stone,
I am writing good bye letters and there is so many of you, I can't write that much. I'm so sorry that we did not get to say good bye in person. I want to start off by saying sorry to anyone and everyone I ever hurt. I love all of you! Let me continue by saying thank you to my teachers and staff for the wisdom I have and thank you for your friendship. To the students, thank you for your help, trust, and friendship. Thank you so much for being there, you made me who I was. Your friendship meant so much to me and I will hold on to it in HEAVEN. I will remember every pep rally, battle of the classes, home coming game, dance and sports event. I will remember you my high school experience and to those who grew up with me keep our memories in you heart. I love and will miss all of you, I'm watching over you.

Valerie

The letter to everyone, that she wanted read at her funeral.......

I'm not really sure how to start this off, but this is how I'm going to do it. I will forever miss all of you and will be with you always. I don't want you to cry and be upset that I'm gone. I want you to remember the good and fun experiences we had. Being alive and writing a letter for my death is hard but there are feelings that need to be expressed. In the beginning when I first got sick, I did not want to believe it. I was so strong and tried to be as strong in the end, but it has been harder. I just wanted to say thank you for all your prayers because you're the only reason I was so strong. Your support was AMAZING, and it keep me alive longer. If I ever hurt any of the people in this room or anyone anywhere I'm asking for your forgiveness and if you could just answer in your head I'm sure I'll get the message. I love and cherish all of you, your all so wonderful. I want you to know you all made my life beautiful and made me who I was. I thought I was a great person and it was because of the great people in my life, YOU! Thank you, I love you. These are my final words to you.

Good bye.

poems read.....

Poem One
When I must leave you

When I must leave you for a little
while, please so not grieve and
shed wild tears and hug your sorrow
to your through the years, but start
out bravely with a gallant smile:
and for my sake and in my name live
on and do all things the same, feed
not your loneliness on empty days,
but fill each waking hour in useful
ways, reach out your hand in comfort
and in cheer and I in turn will comfort
you and hold you near;

and never,never be afraid to die,
for I am waiting for you in the sky.

Poem on Prayer Cards
Do not stand

Do not stand at my grave and weep
I am not there, I do not sleep
I am a thousand winds that blow
I am the diamond's gift of snow

I am the sunlight on ripened grain
I am the autumn's gentle rain.
When you awaken in the morning's hush
I am the swift uplifting rush

Of quiet birds in circled flight
I am the soft stars that shine at night.

Do not stand at my grave and cry
I am not there, I did not die.

Poem Two
Afterglow

I'd like the memory of me
to be a happy one,
I'd like to leave an afterglow
of smiles when life is done.
I'd like to leave an echo
whispering softly down the ways,
Of happy times and laughing times
and bright and sunny days.
I'd like the tears of those who
grieve, to dry before the sun
Of happy memories that I leave
When life is done.

Eulogy read by Best Friend, Kirstyn Hughes

Valerie was my best friend. Actually best friend is only for lack of a better word. Everyone has best friends… but us we were something different. I had known her since a little ways through the first grade when she moved in next door to me. She used to tell me that if they had never moved in we would have never been friends at all because me and her are complete polar opposites. From the day we met… with me running in and out of my house, which I don’t remember doing, we’ve been inseparable.

We’ve done everything together from building huge snowmen, going to school together, playing with shaving cream, playing on train tracks, talking about the most pointless and yet hilarious things in the world, going on 2 cruises, camping, staying over each others houses, playing dress up and Barbie’s and house and Spice Girls, and going through this whole experience of her getting sick together. You name it; we’ve done it all... together. And no matter what we were always there for each other.

One day she told me we made a whole person. She’s the nice push over half and I was the straight forward tell you how it is and not care what you think half. Now even though she’s gone her half is still rubbed off on me… every bit of her has.

To quote a letter she wrote me…
“We never really had any bad memories, we never really fought and we always made up the next day and that’s because you’re really supposed to be my sister. You are my sister and I love you forever.”
I don’t think I could have put that in any better words.

I hope this gave you a piece of the beauty of Valerie's service, if you were unable to attend. Now if I have not given you to much to read already, I would like to thank the community, Valerie's teachers, friends, swimmers, Charles County Government, Arlington County Fire Dept., the MD Independent, and all the businesses that supported Valerie and our family. It has been a very hard long year and you all made it possible to deal with it. I will never be able to show you all how grateful I am. If any of the medical staff that helped in the care for Valerie is reading this, I want you to know that we are very pleased with the care Valerie received. Without you all, Valerie would not have made it to Hawaii. Thank you

Love always,
Bernice

Arrangements for Valerie are Below

2006-10-21T13:00:00.000-05:00

It was one of Valerie's wishes that any of her friends may bring a small token that would remain with her.

Monday, October 23, 2006
Viewing
Raymond Funeral Home
5635 Washington Ave.
LaPlata, MD 20647
301 934-2920
2:00 pm - 4:00 pm
6:00 pm - 8:00 pm

Tuesday, October 24, 2006
Service
Trinity Baptist Church
2671 Mattawoman-Beantown Road
Waldorf, MD 20601
301 645-7889
11:00 am

Burial at
Trinity Memorial Gardens
3221 Mattawoman Road
Waldorf, MD 20601

Reception to follow.

For directions, please use Mapquest at http://www.mapquest.com

Valerie's obituary will be in the Washington Post on Sunday, October 22 and in the Maryland Indpendent on Wednesday, October 25.

It is the family's wish that all eulogies be approved prior to the services. If you would like to speak, you may contact Teri directly at teri@babychatter.com or 301 751-5234 and she can get the message to Bernice.

Update 10-19-06

2006-10-20T11:36:00.000-05:00

Hello,

Wednesday the 18th Valerie went down hill around 6pm. She started to breath very fast. I checked her lung sounds and she had quite a bit of fluid in her lungs. She was very sleepy but did respond and follow commands. She was no longer able to swallow any of the meds that were still in pill form. We did not get much chance to see how the thick it worked. She is just unable to swallow much at all. I called hospice and we got a medication called transderm scop. This helps with what they call "terminal congestion", what Valerie has. I was not sure if she was going to make it through the night. She did and then all day Thursday she had visitors and perked up quite a bit and talked to everyone. She was still having the congestion, swallowing problems, and rapid breathing. After her last visitor left she started to go down hill again. We increased her morphine and lorazepam to make her comfortable. Her oxygen levels are very low and falling. She is no longer responding. Her breathing is starting to slow down. So this is the last update. Thanks for you concern.

Arrangements will be posted,
Love,
Bernice

10-20-06 Update

2006-10-20T11:13:00.000-05:00

Hi,

Valerie passed at 9:09 am this morning, Friday, October 20th. As soon as I have arrangement information, I will post it to this website.

Sincerely,
Teri Hanson
Webmaster

10-17-06 Update

2006-10-17T20:54:00.000-05:00

Hello everyone,

Well in the last week Valerie has deteriorated quite a bit. It seems all too real now. Valerie decided she did not want to take her chemo any longer. She assured me that it did not matter to her if it was slowing the growth down. She said it was making her sick and she would rather it grow faster and not be as sick then to be sick all the time and live longer. She stopped taking it on the 11th. She is not getting as sick but I am not sure if that is because she stopped the chemo or if it is the marinol she has been taking. She does not eat very much at all now and has been sleeping most of the day and night. Some days she will sleep the entire day and not eat a thing and then the next day we will be able to get her to eat 2 or 3 times. About half bowl of soup is all she will take in for a meal.

The other changes are with her throat. She takes a while to swallow. It is as if she has to think about it and prepare to swallow. A lot of the time she chokes on drinks. So we have "thick it". This is something you put in liquids to make it thicker. This should help with her swallowing drinks. The swallowing problem does make eating a big issue. She will hold food in her mouth and not chew it. We have to keep reminding her to chew and swallow. We are feeding her now. She spills everything if she holds it. Her speech is slurred now. This is due to the tumor in her brain. She is having problems with her eyes also. She has double vision and she is dizzy most of the time she is awake. It is hard for her to look to the left, to look at whom ever is at her bed side. Sometimes more than others. It seems to be worse the first half hour after waking her up. When she is awake she often has a right sided stare. She will look off at nothing, and if you get her attention she will stop. However she will gaze off again.

We have changed some of her medications today. Trying to lower the pills she has to swallow. Her decadron (steroid) will be a small amount of liquid now. We are stopping her methadone and have replaced it with a fentanyl patch, that we will change every 72 hours. This is for pain. We are slowly taking her off the neurontoin. She has been on this for a long time. It was for pain in her legs before she lost movement in them. We are also taking her off zelnorm. it does not seem to help her bowels anyway. Also stopping the zofran, that was for nausia caused from the chemo. She has other meds for that now and she is not taking the chemo now. So with all those changes we have taken quite a bit of the pills she was taking away. The medication changes started today so I will keep you updated if there is a problem with the changes.

I want to thank everyone for their continued support and prayers. It has been a long year for us and it seems we are coming very close to the end of this hard journey. I am not sure how much more updating I will be doing, but if I can't I will get someone to take over with letting you know what is going on.

From the bottom of our hearts, thank you for everything!
Bernice

10-05-06 Update

2006-10-05T18:49:00.000-05:00

Hello everyone,

7 1/2 hours later she was done her blood transfusion. Her color is much better and she is not as tired as she has been. That is great. She is feeling a lot better, however she still has nausea and vomiting. This is from the Chemo I would suspect, since we have fixed all the other issues. Well this is the first chemo that Valerie has been on that has given her any side effects. However that is ok since it seems to be slowing the growth down. Looking back at the speed it was growing and how fast it was taking away mobility before this chemo. She has not had much more deterioration of her hands or any major problems with her breathing. So I guess the nausea and vomiting is a small price to pay for more precious moments. The doctors have given us another medication to try and help with her vomiting. They gave her marinol. They said she will most likely need a blood transfusion once a month while on this chemo. We will be checking her blood work bi-weekly.

Well that's all for now. Thanks for your concern,
Bernice

10-03-06 Update

2006-10-03T05:30:00.000-05:00

Hello everyone,

For the last few weeks I have been waiting for Hospice to get on the ball. I have been having problems with communications. I have been asking them to get the orders from Children's to have her complete blood counts checked. They always checked them every other week. So when Hospice took over it was going to get set up for them to take her blood. That way we did not have to take Valerie to clinic every other week just for that. Well to make a long story short it took several times of me asking Hospice to call and get the order before it finally got done. So here we are now. I got her levels back today they are LOW.

Hemoglobin measures the amount of oxygen carrying proteins in the blood. Normal is 12-18. Valerie's is 5.1

Hematocrit is a measurement of the proportion of blood that is made up of red blood cells. It reflects both the number of red cells and their volume. I believe normal is 40%. Valerie's is 16%.

White blood cells protect the body against infection. They attack and destroy bacteria. I am not sure what the normal is for that but I know she is very low on that too. Valerie's are 1.8

Platlets help with blood clotting. Normal is 150-450 Valerie is 190. So we are ok on that.

Tomorrow morning we are going to Children's and she is getting a blood transfusion. This should make her feel so much better. I just wish we could have found this out two weeks ago so she did not spend this last two weeks as sick as she has been. As they always say. If you want something done right, do it your self.

Thanks for your concern and prayers. I will update tomorrow and let you know how the transfusion went.

Bernice

9-20-06 Update

2006-09-20T06:42:00.000-05:00

Hello everyone,

Sorry I have not updated in a few weeks. Things are not much different. She has a few good days and then a few bad days and it goes back and forth. We have not been able to pin point any certain cause that makes her get sick. But when she does have her sick days, she can not keep anything down and she pretty much sleeps all day. That will last about 2 days and then she will feel good for about 2 days.

Her appetite is gone down. When she is not sick she eats but small amounts and not as many times a day, like she was last month. She has got addicted to Starbucks . Mother like daughter :-)

She does not seem to be as depressed as she was. She excepts people coming to visit now, when she is feeling ok that is. With her being sick so often it is hard to make plans to go places or have people set up to visit. It is like one minute she is fine and then the next she does not feel good and then it lasts for a couple days.

She is still able to use a spoon on her own. However she can not pick up her pills or any small candy. So we have to feed her that. She uses her home oxygen from time to time and we use the morphine more now.

There is not much else to say right now. I will update as changes occur. So if time passes without an update that means she is not getting worse.

Thank you all for your thoughts and prayers,
Bernice

8-29-06 Update

2006-08-29T15:24:00.000-05:00

Hello everyone,

Valerie has her good days and her bad days. Some days she is in more pain than others. She has lost a lot of her strength in her hands. She can hardly hold on to forks and spoons to eat with. We use plastic ware now because it is lighter and easier for her. If I had to take a guess within a week we will have to start feeding her. She also has a heavy feeling in her chest now that makes her feel like she has to work a little harder to breath. We now have home oxygen for her to use when she feels she needs it. 2 lpm via nasal cannula right now. We have had times lately that her neck is hurting her and she can't get comfortable and then she get very upset. So with that in mind the Dr. has given her lorazepam to calm her when she needs it and they have also given her another pain medication - morphine 10mg sublingual (under her tongue) every 2-4 hours as needed. She still takes her other pain meds. This started yesterday. So I guess now we have everything we need to keep her comfortable. A few days ago she had nausea and vomiting, not sure why that stated all of a sudden. She has not had to deal with that much. So we also got a medication called prochlorperazine to help her with the nausea and vomiting. So far so good with that. I wish I could update good news but it seems now we have hit the time where there is not much good left without a miracle. So as always I will keep you posted as I can.

Thanks again for your continued concern.
Bernice

8-17-06 Update

2006-08-18T06:53:00.000-05:00

Hello,

Well we went to Children's today. The tumors have grown, and are now all connected up the spine. They are about 2 inches away from the danger area. The area that will effect her breathing. She is having a lot of pain in her shoulders now along with the weakness. They told Valerie that their was no sense in continuing the IV chemo because it was going to make her sick and she has not had any signs of the tumor grow being slowed down. They gave her the option again to do nothing but treat her pain and symptoms OR to try another chemo pill form that would not make her as sick as the other would have if she had keep taking it. Another chemo that has worked for some with this type of cancer. She chose not to give up, so we are going to start the new chemo as soon as Walgreens get it in. We also increased the dose of her pain meds to help her. We also are going to start her on any anti-depressant medication. I know you must all be saying that will not take away the depression she has every right to feel. YES that is very true, however she has shut down to others and does not want to do things to have some enjoyment or go out of the house for much of anything. So this medication will be a helper. Kinda like a ladder in the deep end of the pool, you need it to get out but if the pool is empty you can not reach the ladder. So the medication will be the water way to the ladder. So I am hoping the medication will give her a boost, so she may have better quality of life.

As you all know if you have ever been or know someone who has been very ill, you see many different doctors. Some are like good cop/bad cop. Meaning some give you the glass is half empty response and some give you the glass is half full. Well anyway Valerie's two main doctors are that way, both great but their outlooks differ a bit. Valerie asked them both separately how much time they though she had before losing her arm function and breathing issues to begin. One told her any time now for the loss of her arm function and not far after the breathing problems. The other said I don't thing it is going to be like next week. He felt a month or two. So I guess we need to ask God for the answer to that one.

Valerie will not be returning to school. Going to school for the day is out of the question. We talked about home school, however Valerie's hands are weak and her hands shake. That makes it hard for her to write. She also can not read for very long before getting a headache. So school at this point is not an option. We would like to give our very best to all the teachers, staff and students at Thomas Stone High School for all their love devotion for Valerie for the past 7 months.

Thanks for your prayers,
Bernice

8-10-06 Update

2006-08-11T08:08:00.000-05:00

Hello,

Valerie is doing really good with her new chemo, meaning she is not getting sick and her blood counts are still normal. This is her off week, then she will get her next treatment on Thursday the 17th. She had her MRI this past Tuesday. She had to be sedated for it because she cannot lay flat on her back anymore. The MRI went well, the sedation worked well. The worst part for her was not getting to eat for 10 hours before the MRI. We have not decided if we will call for results or just wait until Thursday. We don't expect it to be good news, so we might as well just wait. It was done more as a update on her prognosis, I think. Valerie is having more weakness in her hands. But she is still able to use her arms and hands for everything. The only other change with her is she is depressed now. I think she was in a denial stage for a long time and she is now moving through the stages of dealing with having a terminal illness. She is frustrated with her body. Her weight gain, feelings her body puts off that are different all day long. She said she can not read her body anymore, can't tell what the feelings are. You know, if she is hungry or she is having stomach cramps. Sometimes she has a tiny bit of feeling in her legs and other times she does not. That is all I have for now.

Thanks for your continued concern. I will update again when we get the results of her MRI.
Bernice

Update 7-27-06

2006-07-28T06:26:00.000-05:00

Hello,

Valerie is doing good. We went to Children's today, she had a picc line put in her arm. This is the permanent IV for her IV chemo. She also got her first IV chemo today. The name of it is Irinitecan or (Camptosar) the short version CPT-11. The possible side effects are.......diarrhea, low blood counts, sweating, fever, nausea and vomiting, loss of appetite, stomach pain & cramping, hair loss and fatigue. She has not had any problems with it yet. She received one dose today and she will get the next dose next Thursday, then she gets a week off to recover a bit. She will then start the next round. The nice thing about her picc line is, they can do her blood draws from this, so no more bruises from IV sticks. The Dr. said this Chemo has reported to have 20-30 % chance of helping with blastoma's and sarcomas that have not responded to oral chemo. It most likely won't shrink it, but may slow it down. Let's all pray for the shrinkage.

She has not had any more changes with the numbness in her hands. She is also having more problems dealing with this all now. She is more frustrated for what she is losing and scared. It makes it hard for all of us. There is just nothing I can say to make it better. I wish I could tell her it was going to be OK.

To any of her friends reading this, She has taken her myspace down and she does not check her e-mail. Using the computer gives her a headache. I do read her the comments posted on this web site. When Valerie's blood counts fall, she will not be allowed to have visitors. It is just too risky for her. Her body will be to open to infections that would be to hard to get rid of. SORRY. I know she miss all her friends.

Just a note to anyone looking for a good charity to donate to. I suggest the Make A Wish Foundation. When People donate to them 100% of it goes to making kids wish's come true. It does not pay for anyone's paycheck. They sure did work wonders for Valerie. The other good place is the Charles County Hospice. Their organization is so small, that they are way under funded. This hurts people that have lower quality insurance like Medicaid and medicare I believe. It makes it hard for people to have the medical care they need and the home health care they need at the same time. So far I have been lucky, I have not ran into any of those problems. However, many people do.

Thanks for your continued compassion for our Family,
Bernice

Update 7-21-06

2006-07-21T08:53:00.000-05:00

Hello everyone,

We are home from our trip. Valerie had a good time. There were some things she did not get to do, that she wanted to do. However we did go on a helicopter tour of one of the island. We saw lava and lots of water falls. The ship was nice and the employee's were great. They all wanted Valerie's trip to be the very best and they did all they could to make sure it was. We had a nice beach day in Maui. It rained on the mountain behind us. The wind blew a fine mist on us while we sat on the sunny beach. It was great. Hawaii is just beautiful and you see rainbow's every day.

Valerie did very well on the trip. The long plane ride went well, she slept most of it. Some days she was more tired than others. When she did not drink enough she would not feel real good, but once we got her hydrated again she was back to enjoying herself. She did have a few changes during the trip that suggests tumor growth, but nothing that put us in the medical center. Her lip is now numb feeling. This is due to the tumor in her brain. It is pressing on her 5th cranial nerve. That is the nerve that controls feeling in your face. Her shoulders and arms are in pain now. So the concern that she will be fully paralyzed soon is scaring us. Pain in the legs was the first sign of losing feeling and movement of her legs. She also is having numbness in her fingers. This is pressure in the nerves in the area of C5-T1 in the spine. The C2 and C3 are the biggest area of concern. If the nerves in this area get damaged Valerie will not be able to breathe on her own. So now is time to pray hard to keep the growth from this area.

We went to the Dr. today. She is getting a MRI next week and Valerie told the Dr. today that she want to fight harder on the cancer and try the IV chemo. Even if it makes her sick. She wants to keep it from growing anymore or slow it down. So the DR, is going to think about different chemo's for her and call us early next week. She will get a Med. port placed in her arm for the chemo. This is how she will get the chemo. It is like an IV that will stay in, so they do not have to keep sticking her with needles for every chemo treatment.

So this is where we are. So keep praying for her and maybe we will get more time. A miracle would be GREAT!!!

Thanks for keeping up on Valerie's condition

Bernice

7-7-06 Update

2006-07-06T23:32:00.000-05:00

ALOHA,

Valerie went to the Dr. today and she is doing good. Her surgeon said that her headaches were low pressure headaches. Her brain has been under high pressure for a while and now that the shunt is doing its job the brain thinks her pressure is low. She advised it would take one to two weeks to adjust. She sat up almost all day today with only a small headache, so it is already getting better. This means we are headed to Hawaii. :-) Lets all pray that we have no problems on her trip. We are going to get a MRI when we get home. So the next update will be about our trip. Thank you all for all your love and support.

ALOHA
Bernice

Update 7-4-06

2006-07-04T17:21:00.000-05:00

Hello everyone,

Valerie is doing good compared to last week, however we are having problems with headaches every time she sits up. So I am not sure if we will be making our Hawaii trip. I just don't see how she can make a 12 hr. flight. She is very upset about it. I am hoping that the Make a Wish can change her trip to a cruise from Florida and maybe we can drive or take a train down there. That way she can lay down on the way. She does not seem to care about what she will be able to do wherever we go, she just wants to lay on different beaches with blue water. I don't care what we do, I just want her to be happy and gets to see everything she wants. If we did not have to worry about what may happen the next day, we could drive or take a train to California and cruise to Hawaii from there. Who knows what the next days or week will bring or take us. Lets pray what ever it may be, that Valerie is pain free.

Love,
Bernice

Update 6-30-06

2006-07-01T16:30:00.000-05:00

Hello Everyone,

We have had some up and downs the past few days. It started at 4 am on Wednesday. She woke me up complaining of a headache 10 out of 10 pain, and she started to vomit. I called the on call Dr. at Children's and it happened to be one of her Drs. We took her to the ER and she got a CT. It showed the ventricles in her head were enlarged. Due to all the tumors in her spine we could not do a spinal tap to find out what her pressure was in her head. So we were sent to the opthamalogist for an eye exam. This would tell us if she had pressure on the optic nerve from increased ICP. She did have pressure build up again. So we were admitted to the hospital for her to get a shunt placed in the ventricles of her brain. It runs down to her peritoneum (stomach) to be reabsorbed by the body removed by the kidneys. This was scheduled for 10 am Thursday. Valerie had a hard night Wed. night. Every time her pain medicine started to wear off she got very agitated; she was unconscious for the most part. At about 8:15 Thursday morning Valerie was getting agitated again and the nurse and I were trying to manage that when she started to vomit and then has a seizure that was decorticate posturing and she stopped breathing. This lasted about one minute. Then she was back to being unconscious. When this started to happen the nurse called out for a CODE BLUE. I was NOT READY FOR THIS AND COULD NOT BELIEVE THIS WAS HAPPENING!!! THANK GOD IT DID NOT GO THAT FAR!!!! As they cleaned her up I was talking to one of her Drs. and he advised that the surgery was not a good idea at this time and told me I need to think of what Valerie's wishes would be for life support. I did make Valerie a DNR, however I was not ready to give up on getting the surgery. There was only one way to find out if it was the tumors or increased ICP causing the seizures, and that was to take one of them out. So I talked with the surgeon and told her if she felt she could do the surgery without Valerie having any grave complications while on the table, I wanted it done. She agreed so we changed the time of her surgery for afternoon and would see how she was doing then. To make sure she was stable enough to get it. Her neurologist thought tt was risky. He thought if we intubated her for surgery that she would not be able to be extabated and would then be in ICU on a vent. This was not Valerie or my wishes. However I felt it was more important to see if this would work and if we could not get her off the vent in a reasonable time I would deal with that then. Valerie went down to the holding area for surgery at 12:30 and we had a prayer with her pastor. Then 5 minutes later she had another seizure. This one was not as bad as the first one that morning. They took her in to the OR while having the seizure. They did not want to give her more meds to stop it when they had to give her other medication to put her out for surgery. When they got in the OR they found that Valerie's IV got pulled out during the seizure and they had to get another one while she was a bit combative from the seizure. So to say the least she has a few bruises from the IV attempts. Well, she came out of the surgery fine and was able to breath on her own. The surgeon felt very good about how everything went during the surgery. However Valerie was not waking up as soon as they would have liked. They were hoping for Valerie to be awake in a few hours after the surgery. They kept her on pain meds all night and she was sleeping good. However we still did not know if we fixed the problem behind the seizures or headaches. During the night I had to keep getting up to fix Valerie's IV, she kept bending her arm and cutting the flow off. So the pump beeps at 2 am when I was fixing her IV again and she woke up and talked to me. She was now alert and was wondering what was the bump on her head. She has been doing very well ever since. We went and got a CT again this morning and the shunt is placed good and their is no bleeding. It also showed that her ventricles have got smaller. So far so good. She ate some breakfast and watched some TV this morning. She had some visitors and a few naps today and is acting like normal Valerie. The DR has said she can still go on her make a wish trip as of now. I hope we do not have any more bad days coming our way. I was taught how to straight cath her, so I can drain her bladder for her. She is now sleeping for the night and we should be going home tomorrow.

Thank you to everyone that came to the hospital. I hope the next update will be to tell you how much she enjoyed her trip!

Thank you for your love and support
Bernice

Update 6-15-06

2006-06-16T05:56:00.000-05:00

Hello everyone,

I have more information. We went to the Doctors on Tuesday. Valerie's condition has deterioated. The last MRI we had showed that the tumors are growing very rapid. Faster than any grade 4 the Dr. has ever seen. They are wrapped around her spinal cord now in many areas through out her spine. As they get bigger it compresses the spinal cord. This can cause many problems for Valerie. From the bladder problems to being paralyzed or even able to breath on her own. Right now the effects she is having is leg pain and weakness that is increasing a little more each day. This is making it very hard for her to walk. She is also having the same bladder problems however as of yet they have not got any worse. She has been referred to The Charles County Hospice for her upcoming home health care. They will help us get a wheelchair for her and any other things she may need. I was given 3 options for the upcoming treatment for Valerie.
1) High dose chemo via IV, that would break her body down significantly and has a high risk of deadly infections that her body would not be able to fight. With this she would spend most of her time left in the Hospital, and it may not even effect the tumors at all because they have not responded to chemo at all.
2) A different low dose chemo that she takes at home and get another MRI in 20 days and see if it slowed them down at all. This chemo will drop her blood counts however not as severe as the IV chemo would. If the tumors responded to this chemo it would be worth the side effects and risks of the IV chemo.
3) Do nothing but treat her pain and keep her comfortable. Now this is the hard part. The Dr. said if it continues to grow at the speed it is now, she may only have a few weeks or few months left, depending what area of the spinal cord gets compressed. She has tumor at the level C3 in the spine and this is the most critical point. This area controls her ability to breath on her own.

Well, I was not ready to just give up on trying to slow or kill the tumors, so we picked the low does chemo at home. Valerie does not want to spend any more time in the hospital nor do I want her to spend her final days in the ICU. The Dr. also did suggest that we see if the Make A Wish Foundation was able to move up her trip. I am not sure if that is possible, due to the dates of cruise's they gave us before, I picked the first one. Valerie said she does not want to change her trip to anything else. She said she wants her cruise and she did not care if she was in a wheel chair. Let us all pray that she gets her trip with no more physical limitations. Or even better a MIRACLE, and the tumors respond to this chemo and start to die.

I am sorry if you know Valerie and me, and are finding out about this over the internet. But it is very hard for us and telling the story over and over gets hard. I will try and update as I can or have someone else do it so you all know how she is doing.

Thank you all for your care and concern for us.
Love,
Bernice

Update 6-7-06

2006-06-07T18:33:00.000-05:00

Hello,

We have some changes as to the last update. Sorry, this happened the next day after the last update. I have been busy and did not have time to get a new update out. So this is dated back to Friday the 6/2/06

She is not going to get the bone biopsy right now. Her surgeon and oncology Dr. along with the radiologist that does needle biopsy had a meeting while looking at Valerie's MRI's and they came to the decision that the areas they were referring to as new, were to small to get a good biopsy. They did not want to put Valerie through that and not be able to get a answer. They are more leaning to the side of that these spots on her bones are caused by the radiation. This would be great and would heal on their own. So she has started back on the Temodar (chemo). All of her doctors are going out of the country for a brain tumor conference and will be gone for the next two weeks. This does worry me, because all the Drs. that know about her will not be in the clinic if we have any problems. And as they say the cat's away the mice will play.....

OK, that was last week. Over the weekend Valerie started having problems urinating, and weakness in her legs like she had before when we were taking her off the steroids. I called the on-call Dr. on Sunday and they gave us some ideas to try at home to see if it helped her and if it was not better by Tuesday she should be seen. Well of course it was not better. So we went in to see one of the other cancer Drs. in the clinic. Valerie was not happy to see a Dr. she did not know and was very unhappy when they told her they needed to cath her bladder, so they could make sure it got emptied. We also were sent for another MRI, to find the cause of the bladder and leg problems. This was done Tuesday night. Valerie was put back on the steroids. It is most likely that pressure in the spine is causing these problems.

Well, I keep getting more information to update before I can even get it to you. The Dr. that Valerie was seen by yesterday called and told us Valerie needs to come in to be seen again tomorrow (6/8/06). It is not good. The MRI yesterday shows the tumors have grown in the last two weeks. So this is what has caused her bladder and leg problems. So we will go in tomorrow and talk about what the next steps are. There may be some things we can do to relieve the pressure in the spine. We will be meeting with the Dr. from yesterday and her surgeon. Well I don't think I will be able to bring good news tomorrow but I will update again as soon as I can.

Thanks as always,
Bernice

6-2-06 Update

2006-06-02T14:19:00.000-05:00

Hello again,

Well we went to Children's today to see what the results were for the CT"s and bone scans she had. They did not show any lesions on the other bones in her body. This is good, however it does not answer our question as to what the lesions are caused from on her bones in the spine. So this means she has to get a biopsy of one of the lesions in her bone. This will be done by needle and she will be awake for this, but she will have some sedation. This will be done while she is in the CT, so they can watch where the needle is going. It should be an in and out procedure unless she needs to stay for pain management. She then will start back on the Temodar (chemo). They do not want to start the chemo back until the biopsy is done because the chemo can effect the results of the biopsy. The biopsy will be done next week. We are also going to get a PET scan at NIH also. This might be able to tell us if the lesions are necrosis (dead tissue from radiation) or tumors. However Pet scans don't do as well with small tumors and can not tell us as much as the biopsy.

Well That is where we are right now, back to not knowing what is going on in her body. She is still handling it good, much better than me. That is good. We did get a medication to increase her appetite. I hope it works! She is getting skinny. That stresses me out daily, just trying to get her to eat. Thanks for your continued support. I will let you know how she came through the biopsy.

Thanks so much
Bernice

5-20-06 Update

2006-05-21T07:33:00.000-05:00

Hello everyone,

Well we have the results from her MRI. There is no change in the tumors that she had on the first MRI. They have not got any bigger or smaller. I guess it is a good thing that they are not bigger, but the Dr. was hoping to see them smaller. We also have more bad news, she is showing some lesions on her bones in her spine that were not there before. They are not sure what they are or what is causing them. The glioblastoma does not move to the bones or any other place in the body. So this means she is either having more than one type of cancer at the same time or that the first thought glioblastoma is actually Gliosarcoma. Gliosarcoma is a rare subtype of glioblastoma. Glioblastoma is a relatively rare malignant neoplasm accounting for about 2% of all the Glioblastoma. Gliosarcoma has the same prognosis as the glioblastoma and what I have looked up about it so far, seems to be treated identically. Another possibility is that she has the glioblastoma and something called Histioytosis. It is thought to be a cancer-like condition. This is one of the conditions they thought she had prior to the biopsy. But they did bone x-rays and did not find any spots on her bones then, so that was ruled out. There is a small chance that the spots showing on her spine are caused by the radiation. The Dr. does not think that is it but it is not ruled out yet.

So now Valerie has a few more tests she has to go through in the next few days. She will be getting a bone scan of all her bones and a CT of her chest, abdomen, and pelvis. If they cannot figure out what the spots on the spine are, she will have to get a guided needle biopsy of the bone. Lets hope she will not need that, it is said to be a painful procedure.

Well that is all I have to report, when I know more I will let everyone know. Valerie said she is not going to worry about it until they tell her what she is dealing with. She is so amazing. I tell you she is the strongest person I know.

On a personal note, I would like to thank the Tailgates staff for all their hard work on the benefit on the 13th. I also want to send a big thank you out to all the customers and the businesses that donated money and items for the raffles. I was so amazed at the amount of donations there were. And of course thanks to the people who came out to join the fun and good food.

Thanks for your continued love and support for us.
With much love,
Bernice

Update 5-5-06

2006-05-06T15:02:00.000-05:00

Hello everyone,

Valerie is not doing too bad. I did take her to see her Dr. on Thursday because she started having headaches again on the 3rd. They did a CT and found she has a sinus infection. She has been having a lot of problems with this time of year. So she is on a strong dose of antibiotics for 5 days. The only other change is she is very tired again. We are both getting tired of the waiting for the next MRI. It is on the 15th so in 10 more days we will know where we stand. We are both scared to find out what The MRI might say but still are hoping and praying for the best.

I just wanted to say thank you to the Maryland Independent for the nice articles on Valerie. I also want to send a BIG THANK YOU to Thomas Stone High School, ALL OF THE SWIMMERS, and everyone that made a pledge to a swimmer for the Swim-A-Thon. I could not believe how much they raised for my family. So thank you again. It was nice to have dinner with everyone that came to Applebee's on Tuesday night.
I hope you all can make the Tailgate's function on the 13th, I am going to try and get off work early so we can be there. So I hope to see you all there.

Thanks again for all the thoughts and prayers
Love,
Bernice

Make a Wish

2006-05-05T14:22:00.000-05:00

Make a wish granted Valerie's wish of taking a cruise to Hawaii. She and her family will be going this summer. Special thanks to the Make a Wish Foundation for making this a dream come true for Val. Aloha!

Update April 7, 2005

2006-04-07T09:35:00.000-05:00

Hello everyone,
Valerie had her Children's Dr. appointment today. Now that she is done with radiation they are giving her a break on the chemo drug until we get her MRI and see where we stand with the tumors. She is also off of the steroids and has had no problems coming off of them. We are also taking her diuretic (water pill for brain swelling)down from twice a day to once a day. I thought we were going to have the MRI in 4 weeks, however it is going to be more like 6 weeks. More prayer time :-) The wait is hard but they said due to the radiation if they did the MRI to soon everything would show up bright and they would not be able to see the tumors. This is because of swelling caused form the radiation. She is feeling more tired and has been feeling nauseous more now. They said this is normal for about 10 days after radiation is finished. Then she should feel like her self again. She has a lot of skin changes that are bothering her. She has like tan lines on each side of her neck and down the center of her chest and spine. Her head is tan also. Her skin is very dry, so it is peeling. This is also caused from the radiation. That should go away in about 2 weeks. She just needs to put moisturizer on her self a few time a day.

She is going back to school after spring break. Lets all pray that the other kids will be sensitive to her physical changes and not tease her. You know kids can be harsh. Well it might be awhile before I update again due to the wait for the MRI, So thank you all for your care and concern for Valerie and for everyone's donations of their time and money with the fund raisers. Hope to see you there

Love,
Bernice

Update 3-29-06

2006-03-29T09:42:00.000-05:00

Hello everyone,
Valerie is doing great. It is hard to believe she is sick. She has 5 more radiation treatments left to go. April 4th will be her last one. She had her last treatment on her spine on Monday. Now they are treating the brain only. After April 4th we have to wait 4 weeks to do a repeat MRI to see if the radiation killed any of the cancer. So we have 4 weeks for prayer treatments :-). So give it all you got. We are down to 1mg a day on her steroid. We have decreased it with no problems this time. The next step will be to get her off the water pill. That is for brain swelling. So if we take her off that and she still does not get headaches that will be great!!
I am working on trying to get thank you notes to everyone. If I miss you, I am sorry. I want everyone to know that I am so thankful for everyone's generosity. Whether it be your time, prayers or donation.

Sincerely,
Bernice

Update 3-20-06

2006-03-20T16:01:00.000-05:00

Hello everyone,
Sorry I have not updated in awhile. Last week has been great for Valerie. She feels great and has more energy. For weeks she has had tingling in her feet all the time; you know like when your foot falls asleep. That is gone now. I asked the Dr. if that might mean that the tumor has got smaller by the radiation and he said yes, it sounds like it. :-) So we are trying to take her off the steroids again. Remember the last time we tried she started to have bladder problems and weakness in the legs, due to swelling from the tumors. We took the dose down by 1mg a day for the last 3 days and then we are taking it down another 1mg tomorrow. She really wants to get off of it because it has caused her to gain some weight. So far so good. She has not had any more problems. We are half way done with the radiation. She gets weekly blood work done to keep an eye on her blood cell counts. She has had some drops in the blood cell counts. Each week it drops a little more, however they are still in the normal range.

Thank you to everyone for your continued support and prayers.
Bernice

3-11-06 Update

2006-03-11T23:14:00.000-05:00

Hello everyone. I just want to say thank you to everyone that helped and came to the breakfast. It was very heart warming to see so many people who care for me and Valerie. I also want to say thank you to the people that bought a ticket and were not able to come. Sorry we missed you. If I missed coming by your table, I am sorry. I tried to get around to everyone. However the turn around was fast, it seemed like I saw new faces as they were leaving. Well I hope everyone enjoyed their breakfast. I say every one should visit Applebee's more often. It was so nice of them to give us a nice place to have breakfast.

I also wanted to thank Thomas Stone High School and all of the swimmers that busted their butts on the Swim a Thon. I am sorry we were not able to stop in on the one at Lacky High. Thank you to every one that placed a pledge for a swimmer. It continues to amaze me, how people come together for one another. So thank you to everyone helping us, praying for us.

For an update on Valerie, well she is doing very good. She feels great and has had lots of energy. She even did some swimming when we stoped in for the Swim a Thon. Well that is really all I can think of right now. No news is good news, RIght.

Sincerely,
Bernice

Valerie spotted on a Zamboni!

2006-03-09T13:08:00.000-05:00

Last nights Washington Capitals hockey game was a huge success. Not only did the Caps defeat the Penguins, 6 to 3, but Valerie got to ride the Zamboni ice resurfacer machine! You may have caught a glimpse of her on tv if you watched the game. While Valerie was an in-patient at Children’s Hospital, the Washington Capitals visited the hospital and Valerie was given tickets to last nights game by Olie Kolzig. Valerie and her family had a great time and Valerie made friends with a bird that wouldn’t leave the ice she named “Paco”. Olie made this a very special night for Valerie and her family. Thanks Olie!

Update 3-8-06

2006-03-08T07:12:00.000-05:00

Hello everyone, sorry I have not updated in a while. There was not much change until recently. Valerie has had 10 radiation treatments and has done well with them. Some days are long and some are quick. A few times a week they do films to check her alignment. Her leg weakness has gone away and she is walking with her feet closer again. Before, she was walking in a wide stance for balance. The bladder problems have got better also. I am not sure if it is the radiation doing some good or the higher dose of steroids. I am just glad to see her be more active. She had her sweet 16 birthday party this past Saturday. Every thing went well with that. She looked great and felt great. It was like she pulled energy from everyone in the room and she danced all night. She was breath taking. A few days later she came to me after taking a shower and showed me that she was now losing her hair. :-( Only after 10 treatments. I hope the cancer is as sensitive to the radiation as her body is. Well she was upset, we talked about it and she decided she did not want to watch more and more hair fall out as the days passed. So today we went shopping for hats and wig's and other fun stuff. We had a pizza and hair shaving party at her best friends house. We gave her different cut's and styles as we took pictures and then shaved it all. She is happy that she shaved it but she is upset that her hair is gone. She said she just could not watch her hair fall out a little at a time. But she will get use to it.

Well that is all I have for now, thank you all for your support.
Bernice

Update 2-23-06

2006-02-23T20:40:00.000-05:00

Hello everyone. Again Thank you for your interest in how Valerie is doing. Today was her second radiation treatment. It was much better for her today. It was in and out 20 min. She is starting to have some side effects with the Radiation. It started last night and got worse after today's treatment. Part of her ear, below the ear drum has some swelling and is red ( on the inside). So it is causing her quite a bit of pain. They said that she seems to be sensitive to the radiation but that her body should get use to it soon and the pain will go away. Now let's hope the cancer is sensitive to the radiation too and dies!

We did another urine test Clean catch this time and it does not show any infection. So this means that the tumor in her spine is pressing on a nerve that control's her bladder and this is why she is having problems urinating. They raised her steroid dose to help this while waiting for the radiation to make the tumor smaller. As for her sleeping problem they want us to try tylenol night time and see if that helps.

We also went to the clinic at Children's today for her weekly blood draw and she received her first Iv medication to prevent pneumonia. She gets that once a month. Her blood draw, checks her red and white blood cell count and a few other things in her blood. They have to watch these due to the chemo drugs. They can lower them and cause lots of problems. They came back normal for today. :-) Between the two appointment, it was another all day run around.

Thanks for keeping us in your prayers
Bernice

Update 2-22-06

2006-02-22T22:08:00.000-05:00

Valerie had her first radiation treatment today. This one was hard for her because she had to get a CT done while she was strapped down in the position for the treatment. This was to make sure they were not going to hit any vital organs when pointing the location of the radiation beam. It lasted 2 hours. The good thing is that the rest of the treatments will only be 15 min. now that they have all the proper measurements.

Valerie also has a bladder infection caused by the catheter placed in her bladder while she was in the hospital. So she is having problems urinating. This started last night. We will get an antibiotic tomorrow when we go for her clinic visit at children's. She is also having problems sleeping and we will get something for that also tomorrow.

At this point the biggest change for Valerie is that she is now starting to get very weak in her legs. They gave out on her last night while trying to go to the bathroom. The Dr said it could be one of two things causing this. One, that when they decreased the steroid for swelling from 3 times a day to 2 times, her swelling could have increased or that the tumor in her spine has got bigger. Either one of these these things could be putting pressure on nerves that control her leg muscles. :-(

The good thing is, the Dr. said she should notice the leg weakness get better after a few treatments.

Thank you all for your thoughts and prayers
Bernice

Update 2-17-06

2006-02-17T22:26:00.000-05:00

Valerie attended her first oncology weekly visit at Children's Hospital Thursday, 2-16 where she was given her prescription, Temodar, for chemotherapy. The worst side affect they are expecting is nasea and she has been given a medication to be given a half hour before taking the Temodar to prevent that side effect. Once a month she will be given an IV medication to prevent phenumonia which is a high possiblity with the particular chemotheraphy treatment she is receiving. The IV medication treatment will start next Thursday and continue every month from then on. She went to her first set up appointment for radiation today at NIH in Bethesda, MD. There was no treatment at today's appointment, purely set up, measurements and fitted devices. She will start going to NIH daily for radiation possibly starting next Wednesday. In my opinion, CVS has made it very difficult for us to get Valerie's prescriptions in a timely fashion, therefore forcing us to use other more efficient pharmacies. Eckerds has been great so far.
Bernice

Valerie is Home!

2006-02-12T00:33:00.000-05:00

After spending over a week at Children's Hospital in Washington, DC, Valerie came home in style in a big white stretch limo courtesy of her Grandfather on Wednesday, February 8, 2006! She was feeling great and very happy to be home. (That's her best friend Kirstyn with her)

Prayer Service for Valerie

2006-02-11T21:52:00.000-05:00

As an active member of Trinity Baptist Church in Waldorf, MD, a prayer service was held on Wednesday, February 8th, 2006 for Valerie. Many people from her church as well as many friends and fellow students from her high school attended.

Check out the room!

2006-02-11T18:44:00.000-05:00

Well, you sure can tell Valerie has a lot of friends and is very loved by looking at her hospital room. There were so many stuffed animals, cards and flowers. She and her mom gathered up their collection of Beanie Babies at home and gave them to other children in the hospital.