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About Skylar
- Skylar
- Roanoke, Virginia, United States
- Just a girl fighting cancer that won't give up until she is cured!!!
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Relay for Life
9 comments:
OK so everyone wants to know what on earth is the update on miss Skylar...well this is what has went on so far...Skylar finished up some of her chemo and we went to meet a new doctor in Richmond to discuss a possible stem cell transplant. Since our trip up there, she has had a biopsy on both legs and it came back that the cancer cells were dead. We have finally gotten a result that made us all smile. So because of this positive, we are now perfect candidate for stem cell. We are currently in patient at Roanoke Memorial Hospital in Roanoke taking chemo that will prepare Skylar for her stem cell harvest, scheduled @ the 21st of this month. The chemo that she is taking now, she has seen before but not in the dosage amounts they are giving. So far last night was a train wreak of crying and pain in her legs and hips but she has finally crashed out for the morning hours. We are having a sample of her bone marrow taken sometime today to double check that there is no disease in the marrow before they harvest her own stem cells. After Friday, we will go home till the 21st and we will go to Richmond for a 5 day stay. There they will insert a catheter in her neck for the harvest and over the days we are there they will take blood out and return it until they collect enough cells. After that we will take the catheter out and come back home. Hopefully we will be able to enjoy our Halloween and Skylar's Birthday here together as a family. After her birthday, the game plan is to shoot off to Richmond for a extended stay of HIGH dose chemotherapy and stem cell transplant. We are told that it can take anywhere from two to three months depending on how well she recovers for the medicines. It is scary. Not only for me but for her because we have no family in Richmond...so please keep up with us and stay in contact with her it will definitely help. But this is the plan so far and I will try to keep it updated as much as I can.
Hello everyone, this is dad posting for Skylar. Just wanted to post an update on Miss skylar and what she has been going through this last few days. Skylar and I came in Friday, October 19th for a transfusion before our trip to Richmond Sunday. While here she began to run a fever out of nowhere and Dr. Meck decided to keep her in the hospital overnight, just in case. Most of that night and the first part of Saturday morning she ran a fever between 101.5 to 103.1.
Saturday, around 1 pm, her fever broke, and she has not ran a fever since then. It is now Sunday morning around 11 am and she is hanging in there and getting some much needed sleep. She did have a rough morning today. Her top line in her chest stopped flowing properly and we have now been trying to figure out a solution to get it running again for about 6 hours now. They have tried to re-access her now 4 times and we think its in the right position now finally. She must feel like a pin cushion with all those needles in her chest.
Dr. Meck has ordered us to go down for an Angiogram, in which they will push dye through her ports to check the flow to her heart. Its kinda of like an xray that shows us whats going on, but its like live pictures or video feed. Hopefully this will help us discover the problem and find a solution to fix things. Skylar is exhausted ans depressed and just wants a break from things. She misses being at home and laying down in her own bed.
As of right now, it looks as if we will be in here at Roanoke Memorial Hospital until we transfer to Richmond for her stemcell harvest. So we shall see and keep everyone posted. Keep her in your thoughts and prayers always. Special thanks to all the doctors and nurses that have been treating Skylar like gold here at RMH. Even through the tears and screams (from accessing) and all, she really loves you guys like family and knows you are taking excellent care of her.
I will post more later today if possible.
-Dad-
Hello again everyone. Its me dad again. I wanted to post an update real quick before Skylar and I go to sleep. Today was a day of dissapointment, anxiety, stress and tears. Skylar's top port is unresponsive and we believe has clotted and cannot be used anymore. The presents a new problem that we must figure out a solution. We believe she will have to go into surgery to have the port removed. As if we did not have enough stress going on, lets add another surgery to our list.
Dr Meck spoke with Dr Godder in Richmond and she has asked Skylar to be transported to Richmond tomorrow around 12 noon. It will be about a three hour ride. They will have an ambulance transport her and Marcy to the Bone Marrow transplant clinic to begin preperations for her treatment and harvesting. Skylar will have to go into surgery on Wed to remove the port in her chest and place a line in her neck for the stem cell harvesting and transplant. Her counts are so low, her mother and I are very worried if its the right time for all this to take place. Her white counts are barely registering at .1 when they should be between 4.5 and 13.5, this is her immune sytem and why we are fighting infections with so many antibotics. Her platlettes are at 10 and should be anywhere from 130 to 400, being this is so low the risk of bleeding is very high. She has had two transfusions of platlettes since friday evening.
Its about 9pm on Monday October 22nd and things have quieted done. All of the news from the day has sank in and we are all tired and are going to try and get some rest for tomorrow. Marcy and the boys are at home and I miss them very much. I looked over and Skylar is sleeping well and its comforting to look over and see her so peaceful in her sleep. God knows she has been through so much over the last 4 years. My little trooper and her battle with cancer shows me each and every day to never give up and appreciate all life has to give us good and bad. People say everything in life happens for a reason. No matter if we cannot begin to understand that reason, we must put our trust in God. I know without a doubt that God will take care of my baby girl Skylar and that he will guide us to what is the right treatment for and the right people to do it for her.
Thank you everyone at the hospital today that helped Marcy and I with our explosion of stress we were dealt today. Skylar's nurses Karen, Leslie and Rachel were the best today. They kept Skylar positive and helped her remember everything we do is to save her life. Rachel even sat with Skylar and watched a scary movie to keep her company. Dr Meck thanks for the talk today in the hallway, we really needed it. Also I wanted to say a quick thank you to a lady at the Ronald McDonald House room on the 14th floor at Rke Memorial Hospital. She came over and spoke to me when I was very upset today and reminded me that God was gonna make everything better. She reminded me to turn all my problems over to him and in him I would find strength to make it to a cure for my little girl. Some days we all need to be reminded of that.
Just a quick post before we head to bed tonight. It is Saturday October 27th. This week has been one of the longest weeks we have ever had to deal with. So much has happened, its hard to know where to begin.
We have good news and some bad news, so let me give you a brief account of this past week.
Skylar left for Richmond on Monday October 22nd. Her experience there was just a nightmare and without going on and writing a book about all the mistakes and problems we had, I will just say I don't believe we will go back to MCV or ever suggest them to anyone.
Anything and everything that could have happened to Skylar did. Total miscommunication between nurses, doctors and other staff caused us all such a headache and wrecked our nerves. Lets just say poor Skylar went thru alot of needless hassle for what I do not know. They we not able to harvest enough stem cells from her because her body is pretty wore out from the chemo over the last few years. So basically her body did not respond the way they expected and produce the amount they needed for a harvest. Which this possiblity was never discussed at anytime before we beagn. Or that heavy chemo prior to this causes issues sometimes.
MCV from the first night, fell way behind on the care we expect a hospital to give. If not for the fact we are so hands on and knowledgeable about Skylar's treatments, I really fear what would have happened to her if we had not been on top of things and watching out for her. Things like her medicines missed and not given, wrong doses, losing multiple labs drawn, not collecting urine, mixing up her records from 2005 with now, doctors prescribing incorrect medicines and doses, runnning pumps incorrectly and those are just a few of the things we have dealt with.
If Skylar had any hair, she would have pulled it all out becuase of this week. I was on the phone numerous times with doctors, residents, nurses, social workers and even hospital administration. I had them in her room at 3:30am in the morning seeing why things were not being done properly. Skylar was so upset she was begging me to come get her at 2am and bring her home. Poor Marcy probably has had about 10-15 hours sleep all week because she was constantly having to monitor the doctors and nurses for Skylar's care and to protect her from anymore of their mistakes.
Oops and sorry can only be heard and accepted as an excuse once or twice. MCV has alot to work on and I will be speaking to the head of Pediatrics hopefully on Monday to place a formal complaint on the hospital. If for nothing else but to protect and help out the next family that has to deal with a mess such as this.
So more good news.....SKYLAR IS BACK IN ROANOKE.....YEAH!!!!!!!!!!
Medical transport brought her back today to Roanoke Memorial for a few days to finish antibotics. Its nice to have her so close even if she is not at home. As for whats next, we do not know. We thought that stem cell transplant was the end for us. They are wanting to try an experimental drug that is not approved by the FDA yet and get special permission to use it on children. I DON'T THINK SO!!!!!!!
My child is no test subject or anyones guinea pig. We will start to look at our options when we get so much needed rest this weekend and begin our journey again on Monday towards getting Skylar to a cure. Thanks everyone for your thoughts and prayers. We will take every prayer we can get.
Good night..........
Hey everyone its dad again. So sorry for the delay in posting. So much has been going on since we last posted.
The stem cell harvest failed and the possiblility came up of harvesting Skylar's own bone marrow and getting the much needed stem cells this way as a way of rescueing her from the heavy chemotherapy. We have been in the process of speaking to doctors at Cincinnati Children's Hospital and coming up with treatment options for Skylar also.
Two weeks ago while repeating the scans to send to Cincinnati, we received news that we did not want to hear. The doctors believe Skylar's cancer has began to grow again and they see the tumors spreading upwards past her knees into the thigh bone area in both legs. Also an area is showing up in her ankle that could be ewings there also. They assume it is because of the diseases growth in other areas.
So her trip to Cincinnati is on hold until we get back to a stage of remission. She started two types of Chemotherapy last week and this week is to begin some pinpoint radiation. I will post more later in the week and do my best to keep this updated more often. I amy also begin Skylar a pweb page on a site called Caringbridges.com. If I do I will post on both, but from other families I have meet at out hospital, they say they love that site so we shall see.
I will post more abouththat this week.
Thanks to everyone for your prayer and thoughts each and everyday. We can't thank you enough.
Hello everyone. Dad here again. I wanted to take a minute to post an update on our Skylar girl and let everyone know how its been going for us.
Thanks to everyone who helped us this Christmas. So many people came together and made our Christmas one we will never forget. The kids were so happy and we had an amazing Christmas meal and invited lots of family over and had a wonderful day.
Skylar has been continuing on with radiation on her legs and it is going great. Some of her blood counts have been low for a few eeks and she has not been able to do Chemo for three weeks now. Hopefully they are headed up and on Monday Jan 7th we can start back with chemo and get back on track.
All in all she is doing well. Just my normal happy, crazy, sometimes mean, silly Skylar all in one....Anyone that knows Skylar knows that it is her personality that keeps her going and fighting so strong.
So continue to always keep Skylar in your prayers. Also just heard yesterday that some good news may be coming in March from Dr. Meck's other doctor connections in Cinncinnati. A new drug for Ewing sarcoma relapses and Skylar is thought to be a good candidate. It is showing lots of great results in their clinical trials and labs, so we shall see.
Thanks to everyone for everything you do. Doing something as small as caring can make the difference in someones day.
Thank you all and take care.
Also feel free to email Skylar at her new emaill address:
skylarsvoice@cox.net
Greetings all....Dad here. Just wanted to post a few things here on Skylar's website.
To all who don't know, the Big Give is a show by Oprah Winfrey. Our family got a phone call one evening from a guy named Cameron Johnson. He told us he had been sent back to his hometown of Roanoke, VA to find someone to give big too.
The next few days was like a dream. We never thought we would be part of something so special, so great, so big as the Big Give. In the end Cameron found our family at a time when we up againist the wall and needed a helping hand. What he left us with was an unforgetable experience that would forever give us the boost needed to make it through hard times. Taking the time to do something as simple as care, helped renew our faith in our fellow man and that all people need to care is a little incentive and it becomes contagious.
hi my name is darren from new zealand
the big give has just aired here id just liked to say hi and to say high and hopefully you will get better
Hey everyone. Wanted to post a long overdue update on Ms. Skylar. IN July of 2008 Skylar had a new tumor arise on her jaw. After a few weeks of radiation it went down and we hope to have it under control.
It is August now and Skylar latest scans show numerous tumor throughout her body. One on her left side of her skull pressing on her brain. two small tumor on her left lung. and numerous tumors are spreading in her legs.
WE are as always looking for a miracle and will be trying a new medicine nexyt week that is supposed to help cut off the blood supply to new tumors.
Skylar has decided to go back to school instead of Home schooling. She is in Junior high now at Madison middle school and loves it.
It will be posting new info more often to keep folks aware of her condition.
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