Update 7-27-06

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

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

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

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

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