We are so happy to say that Shelbie did very well during her surgery to have her port removed on Friday. Before surgery the nurse and Dr's asked her if she was nervous or scared at all for the surgery. Her response was "are you kidding me! I have waited for this day for like 17 months! I am excited, not scared." She is so strong to endure everything she has with such a possitive attitude. It really puts into perspective the everyday trials the rest of us go through and makes them seem so small.The hardest part of the port removal surgery, is her not being able to get her chest wet for a week. That means no showers, just sponge baths and she is definately not happy about it! She loves her long relaxing baths and showers.
The headaches seem to be getting further and farther in between which has been a blessing. Hopefully with the higher dosage of seizure meds they will go away all together.
Shelbie is very excited for the upcoming Spring break. She says it will be nice to take a break from school without her being sick from chemo, or it being a hospital day.......Typical 5th grader!!!!We will keep everyone posted and like always thank you for all the prayers and support.
Tuesday, April 7, 2009
Friday, March 27, 2009
MRI RESULTS
Just a quick update.......
Shelbie had another MRI on Wed night. When we met with the Dr's on Thursday they said everything looks stable. Yea!!!! Everything in her spine looks fine also. The plan now is to have her port-a-cath removed. The surgery for that will be on Friday April 3rd. From there, we will continue to go to Primary Childrens monthly for blood counts and to check in with the Dr's. Of course we will be watching her like a hawk for any possible signs of change. She will continue to take the increased dosage of her seizure meds(Topamax and Trileptal)and hopefully that will continue to help control the headaches and seizures. Shelbie is so excited she almost can't even stand it......We will update more later after the surgery and will add some pics. Thank you for all the prayers. Please continue to pray for Shelbie (as she is not out of the woods yet)and all the other little ones out there that are fighting this monster.
Shelbie had another MRI on Wed night. When we met with the Dr's on Thursday they said everything looks stable. Yea!!!! Everything in her spine looks fine also. The plan now is to have her port-a-cath removed. The surgery for that will be on Friday April 3rd. From there, we will continue to go to Primary Childrens monthly for blood counts and to check in with the Dr's. Of course we will be watching her like a hawk for any possible signs of change. She will continue to take the increased dosage of her seizure meds(Topamax and Trileptal)and hopefully that will continue to help control the headaches and seizures. Shelbie is so excited she almost can't even stand it......We will update more later after the surgery and will add some pics. Thank you for all the prayers. Please continue to pray for Shelbie (as she is not out of the woods yet)and all the other little ones out there that are fighting this monster.
Thursday, March 19, 2009
Sunday, March 15, 2009
I can't believe it is March. Where in the world has the time gone???
There is alot to update everyone on so please be patient if I start to ramble :)
Since I am obiously not very good at keeping the blog updated I need to back track a bit. Last update I mentioned that the Dr's planned on having Shelb be done with her chemo protocal between the end of Feb to the first part of March and follow up with radiation. Keeping in mind that overall she has tolerated the chemo treatments very well with little complicaton, Shelbie's Doctors decided to take her case to the Tumor Board again so the "what's next"plan could be discussed with several other doctors and so they could get several more opinions. The tumor board discussed her case on Feb 13th.
On Feb 25, Gracee (Shelbie's 4 yr old sister) had to have surgery to fix an ambilical hernia and to "make her a new belly button" as her puts it. One of Shelbie's Dr's came to visit Gracee while she was in the hospital but even though we pressed him for info on what the Tumor board decided he would not budge. He made us wait until the next day for our clinic appt.
On Feb 26th, Shelbie, Mom and Daddy Justin went to the appt. Mindy (one of the nurses) came in and axcessed Shelbie's port and took blood for labs just like always. Shelbie was not in the greatest mood because she had been on a 2 week break between chemo cycles and never looked forward to starting a new 10 week cycle. Every week during weeks 1-4 she went to the hospital to have two kinds of chemo administered thru her port. Week 5 and 6 she got a chemo break, week 7-8 she did chemo pills at home daily and weeks 9 and 10 she got another chemo break just to start the same cycle over again. This is how things have been for the past 16 months and a routine that we have gotten used to. This visit was different. Two of her doctors came it to talk with us and then they broke the news to Shelbie. Are ya ready for this.......NO MORE CHEMO.......for now atleast. They said she could be done with her chemo protocal! Instead of doing radiation right away, they are going to hold off a little bit longer. The Doctors said she has to come up to the hospital every month to be checked out and for blood counts to make sure everything is ok. She will need to have an MRI on her brain, T-spine, L-spine and C-spine every 12 weeks to monitor the tumor and see if the chemo has prevented it from growing. The Doctors agreed that as soon as they see any change in the tumor she will start radiation and a new chemo protocal. YEA!!!!!!I don't know what we will do with all the extra time we are gonna have LOL :)
Despite the good news, Shelbie has still struggled with severe headaches. They have gotten to the point that oxycodone and imitrex are not helping. She had another seizure that was noticable (her brain has seizures even though being on meds to control them and sometimes we don't even know she is having one)so we called and spoke with Dr. Filloux her neurologist. Even though she is scheduled for a MRI on the 25th of this month, he insisted she have one sooner. He prescribed her hydroxizine and compazine to help get her to sleep hoping that would help her get on top of the headaches awaiting her MRI on March 13th. The MRI showed that there was no visible signs of tumor change...we are very relieved as this was her first MRI since being off chemo..... After the MRI she had an exam with
DR. Filloux. He said she has increased pressure behind her optic nerve. He feels that this is being caused by her headaches and seizures. His belief is that if she can get on top of the seizures it will help control the headaches and vise versa. He said the headaches are causing more seizures and the seizures are causing her more headaches. His solution is to again increase one of her seizure meds and see how she does with that. He still wants her to have another MRI on the 25th of this month and see him again so hopefully this will help!! We will keep you posted...
Thanks again for all the prayers!!!!
There is alot to update everyone on so please be patient if I start to ramble :)
Since I am obiously not very good at keeping the blog updated I need to back track a bit. Last update I mentioned that the Dr's planned on having Shelb be done with her chemo protocal between the end of Feb to the first part of March and follow up with radiation. Keeping in mind that overall she has tolerated the chemo treatments very well with little complicaton, Shelbie's Doctors decided to take her case to the Tumor Board again so the "what's next"plan could be discussed with several other doctors and so they could get several more opinions. The tumor board discussed her case on Feb 13th.
On Feb 25, Gracee (Shelbie's 4 yr old sister) had to have surgery to fix an ambilical hernia and to "make her a new belly button" as her puts it. One of Shelbie's Dr's came to visit Gracee while she was in the hospital but even though we pressed him for info on what the Tumor board decided he would not budge. He made us wait until the next day for our clinic appt.
On Feb 26th, Shelbie, Mom and Daddy Justin went to the appt. Mindy (one of the nurses) came in and axcessed Shelbie's port and took blood for labs just like always. Shelbie was not in the greatest mood because she had been on a 2 week break between chemo cycles and never looked forward to starting a new 10 week cycle. Every week during weeks 1-4 she went to the hospital to have two kinds of chemo administered thru her port. Week 5 and 6 she got a chemo break, week 7-8 she did chemo pills at home daily and weeks 9 and 10 she got another chemo break just to start the same cycle over again. This is how things have been for the past 16 months and a routine that we have gotten used to. This visit was different. Two of her doctors came it to talk with us and then they broke the news to Shelbie. Are ya ready for this.......NO MORE CHEMO.......for now atleast. They said she could be done with her chemo protocal! Instead of doing radiation right away, they are going to hold off a little bit longer. The Doctors said she has to come up to the hospital every month to be checked out and for blood counts to make sure everything is ok. She will need to have an MRI on her brain, T-spine, L-spine and C-spine every 12 weeks to monitor the tumor and see if the chemo has prevented it from growing. The Doctors agreed that as soon as they see any change in the tumor she will start radiation and a new chemo protocal. YEA!!!!!!I don't know what we will do with all the extra time we are gonna have LOL :)
Despite the good news, Shelbie has still struggled with severe headaches. They have gotten to the point that oxycodone and imitrex are not helping. She had another seizure that was noticable (her brain has seizures even though being on meds to control them and sometimes we don't even know she is having one)so we called and spoke with Dr. Filloux her neurologist. Even though she is scheduled for a MRI on the 25th of this month, he insisted she have one sooner. He prescribed her hydroxizine and compazine to help get her to sleep hoping that would help her get on top of the headaches awaiting her MRI on March 13th. The MRI showed that there was no visible signs of tumor change...we are very relieved as this was her first MRI since being off chemo..... After the MRI she had an exam with
DR. Filloux. He said she has increased pressure behind her optic nerve. He feels that this is being caused by her headaches and seizures. His belief is that if she can get on top of the seizures it will help control the headaches and vise versa. He said the headaches are causing more seizures and the seizures are causing her more headaches. His solution is to again increase one of her seizure meds and see how she does with that. He still wants her to have another MRI on the 25th of this month and see him again so hopefully this will help!! We will keep you posted...
Thanks again for all the prayers!!!!
Monday, December 22, 2008
DECEMBER 2008
Sorry it has been awhile since the last update. Things for Shelbie have been going pretty well. We had been having a hard time controlling some severe headaches she was having (yes, headaches are still an issue). So just to keep it short, the doc's increased some of her seizure meds thinking her brain was having temperal lobe seizures that we were not aware of. They also put her on Imatrex to help treat the headaches as migranes. This has actually seamed to help (quite a bit actually). If she does get a headache, and the Imatrex is not helping, she takes a codene or oxycodone (depending on how bad it is)and goes to bed to try and sleep it off. Poor girl huh!!!!!
School has been going well. Shelbie brought home her first report card for the year and has straight "A's"!!! We are very proud of her, especially with how much school she misses!! The 5th grade went to Clear Creak(just overnight) the second week of December and Shelbie was really worried she would not be able to go. Since she made counts (blood counts) she was able to go and had a blast. She even said it was warmer there than it was at home. Thank goodness there had not been alot of snow for the season yet!! I have to admit, it was kind of hard letting her go and letting someone other than Mom be responsible for giving her all her meds and everything...but she was on a chemo break and make counts so I bit my lip all night long and worried until I knew she was safe at home.
Dec 15, 2008 Shelb had another MRI....it is always stressful anticipating the results....She is just starting her 14th month of chemo treatments(WOW!!! I don't know where the time has gone). The good news of the MRI result is that the tumor in her brainstem has not grown in size. The mass in her temperal lobe remains unchanged....The frustrating news is the Doc's can tell that the tumor in her brainstem is still active.... In a nutshell.... as of right now the plan is to let her be done with chemo the end of Feb to the first part of March ( happy b-day Shelb March 19) and start 6 weeks of radiation. She will be having radiation 5 days a week for the 6 weeks.
On a lighter note.... and humbling one..... we had the opportunity to go the The Children with Cancer Family Christmas Party and had a great time. It is amazing to me each year the amount of love, time and energy all the committee members put into this. Each year there are more tears... more smiles... and more memories.
We want everyone to know how much we appreciate your support and prayers. We hope you have a very Happy Holiday Season!!!
As always, please pray for all the "little fighters" during their battle as well as the ones that are with the Angels now....
School has been going well. Shelbie brought home her first report card for the year and has straight "A's"!!! We are very proud of her, especially with how much school she misses!! The 5th grade went to Clear Creak(just overnight) the second week of December and Shelbie was really worried she would not be able to go. Since she made counts (blood counts) she was able to go and had a blast. She even said it was warmer there than it was at home. Thank goodness there had not been alot of snow for the season yet!! I have to admit, it was kind of hard letting her go and letting someone other than Mom be responsible for giving her all her meds and everything...but she was on a chemo break and make counts so I bit my lip all night long and worried until I knew she was safe at home.
Dec 15, 2008 Shelb had another MRI....it is always stressful anticipating the results....She is just starting her 14th month of chemo treatments(WOW!!! I don't know where the time has gone). The good news of the MRI result is that the tumor in her brainstem has not grown in size. The mass in her temperal lobe remains unchanged....The frustrating news is the Doc's can tell that the tumor in her brainstem is still active.... In a nutshell.... as of right now the plan is to let her be done with chemo the end of Feb to the first part of March ( happy b-day Shelb March 19) and start 6 weeks of radiation. She will be having radiation 5 days a week for the 6 weeks.
On a lighter note.... and humbling one..... we had the opportunity to go the The Children with Cancer Family Christmas Party and had a great time. It is amazing to me each year the amount of love, time and energy all the committee members put into this. Each year there are more tears... more smiles... and more memories.
We want everyone to know how much we appreciate your support and prayers. We hope you have a very Happy Holiday Season!!!
As always, please pray for all the "little fighters" during their battle as well as the ones that are with the Angels now....
Thursday, October 23, 2008
A LONG OVERDUE UPDATE
The first week of October, Shelbie started another cycle of chemo. It has been a pretty frustrating couple of weeks as she has been battling major headaches. Codine, oxycodone... nothing really has seemed to help relieve the pain. After several trips to the hospital, and after meeting again with her neurologist it was decided to increase one of her anti-seizure meds and try treating/preventing the headaches with migrane meds. They prescribed Imitrex. So far between the increase in her Topamax(one of her anti-seizure/migrane meds) and the Imitrex we have been able to keep her off the oxycodone!!!! YEA!!!!!! Her blood counts have been pretty good lately and she has been holding her own (no transfusions). We are almost to a close with this years cheer/football season which will free up some time for her to get some much needed rest. The Dr's reitterated to Shelbie that she needs to listen to us when we tell her she needs to slow down a bit and rest more. She has been determined from the beginning that this stupid tumor and the treatment she needs to get better will not slow her down. It always amazes me how head strong she is for just being 10 yrs old. Ok, ok, I guess she does get some of that from her mom! I also have to say I have been very proud of her. She is always so possitive, she keeps up with her school work and is trying to make sure others are ok even though she is not feeling well. I love you Shelb, thank you for being such a good example to everyone around you... Love Mom
Wednesday, September 17, 2008
Just a quick note......
Shelbie just finished up with her chemo pills for the week and is glad to be on another two week break before the next cycle starts. She is doing very well in school (like always) and hates it when she has to miss. Her school has a program that all the 5th graders get to participate in. They go overnight to a camp called Clear Creek and do learning activities at camp rather than at school. She is looking forward to going as long as she is on a break and her blood counts are good. She is still reading "Twilight" but hopes to have the whole series read before the movie comes out in November. She had a couple headaches this week that were kind of hard to get under control (even with codene). I have to admit, it always worries me what could be going on in her head when the headaches are that bad.
For those of you who don't know, Shelbie started cheering again this summer. She doen't have quite the energy to cheer as much as she used to, and hasn't joined a team again, but she is cheering for the NYFL UTAH again and loves it (especially on chemo breaks). Cheer practice is every Tues and Thurs and there are games every Sat so it is DEFINATLY keeping her/us busy. Thank goodness Landon has football practice the same days so it is not to crazy. I am so proud to say that even mid cycle, she has not missed practice. She may have just sat there instead of practicing, but she has been there!! She even passed down her old uniform to Gracee and has been trying to teach Gracee some cheers. Yes, the uniform is still too big for our Midget but that does not stop her from wearing it!!!
For those of you who don't know, Shelbie started cheering again this summer. She doen't have quite the energy to cheer as much as she used to, and hasn't joined a team again, but she is cheering for the NYFL UTAH again and loves it (especially on chemo breaks). Cheer practice is every Tues and Thurs and there are games every Sat so it is DEFINATLY keeping her/us busy. Thank goodness Landon has football practice the same days so it is not to crazy. I am so proud to say that even mid cycle, she has not missed practice. She may have just sat there instead of practicing, but she has been there!! She even passed down her old uniform to Gracee and has been trying to teach Gracee some cheers. Yes, the uniform is still too big for our Midget but that does not stop her from wearing it!!!
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