History

Tuesday, September 23, 2008 11:45 PM CDT

To Our Friends and Family,

I have not posted here in such a long time, because we have been so fortunate to have been on "cruise control" for so long. As with NF, you always know things can arise that you will have to deal with, but you always think it never will.

Carly has now been off chemo for almost 2 years in October and had been getting her MRI's of the brain every 3 to 4 months. This last MRI has shown great news that the tumors on her optic nerves have gotten smaller...this is truly a blessing we are thanful for. As you know, she began treatment for these tumors in April 2004 with weekly chemo for almost 3 1/2 years, and now...change, yeah!

For the not so good news. There is an area on her brainstem that was not there until recently in 2007 and has grown. They are not sure if this is a new tumor, or just an odd NF thing. We will scan again at the end of December, and we have some second opinions coming up in a couple of weeks.

PLEASE pray for Carly, and that this will be nothing more than a spot that eventually just goes away.

Our family, as most of you know, is "under construction" right now. Please keep us in prayer as we adjust and are now possibly faced with a new treatment for Carly.

Blessings to you,
Chris

Thursday, October 18, 2007 9:13 AM CDT

Just a quick update, Carly's tumors are stable! Her next MRI is in January, and with another stable report in January, we will spread the MRI's out to every 4 months for a year, then every 6 months, then yearly forever.

Thanks again for your continued prayer, support and friendship!

On another note about Carter. He participated in a program at school where they can submit artwork, film, etc with the theme "I can make a difference by..." and he made a film on his running for the NF marathon team for a cure for Carly to the song of Mellis Etheridge "run for life". We went to an awards ceremony last night because he was top 3 of his devision and found out he won to go onto the next level to compete against other schools in our district. If he advances from there, he will go on to state, etc. He said last night, "I really am making a difference, because now alot of people are going to see my video and learn about NF". I wish I could post the video on this site, it is really cute.

Also, Kaitlyn has gotten into the running thing since running for the NF Team now completing 2 half marathons. She runs for her school on the X Country team and each week continues to advance and shave minutes off of her finish time. She is great! Needless to say, I have now lost my running partner, too fast for me!

Thanks again, have a great weekend, Chris

Tuesday, October 16, 2007 7:07 PM CDT

Carly is 7 years old today!

She had her 3 month MRI today (yes I know, on her birthday!) I heard this all day. The entire Children's Hospital in San Diego knew it was her birthday today. I will post the results by Friday hopefully.

Now that we have only go to the hospital every 3 months, Carly has begun to forget alot of people and things that she used to do when she began this journey, not suprising since she was only 3 when it started.

She remembers her favorite nurse Susan, who was there today, Carly was glad to see her, but isn't the same because she has doesn't really remember alot of her treatment.

She didn't remember some of the things we used to do to pass time when I showed her certain areas of the hospital. She didn't remember funny things she used to say when we would check in for our appointments, and she doesn't remember he make a wish trip to Disneyland. She also doesn't remember how LONG everything takes when you are waiting to be seen by the doctor, get tests, etc., because she hounded me all day on "how much longer" would it be.

I am happy that Carly doesn't remember the countless needle pokes, endless hours of waiting, numerous trips to offices. But sad that she doesn't remember the people who made our visits bearable.

Today I was again reminded of how precious life is as I saw kids getting their chemo, with the little "black box" next to their bed(used for severe chemo reactions) that Carly had to have after a severe reaction that I later realized was life threatening, numerous bald heads, parents with that look of worry they try to hide, nurses and doctors doing their job to make things look so "ordinary" for the kids. As we left Children's today after a typical MRI day taking 5 1/2 hours, I had to stop myself from saying as I did just after Carly's 1st MRI at age 1, "I would never be going back there again, too depressing".

Instead, I left thinking to myself how thankful I was that we weren't there every week, and Carly no longer thinks that chemo and needle pokes are a way of life, and that all kids do it.

Thanks for following this journey with us, happy to report that this last year has been "normal" for Carly with just doctor visits every 2 or 3 months and her biggest concern up to this last week was what she wanted for her birthday! It is good to be 7!

Thank you for your continued prayers for Carly's stable tumors,
The McKay Family

Tuesday, July 24, 2007 8:52 PM CDT

Hi,

Carly's MRI showed stable tumors! We are very happy about this. Her next MRI will be in October (her 1 year mark for being off of chemo). If the scans still show stable, we will spread her MRI's out to every 4 months for the next year, instead of every 3 months. She is also going to try and do her MRI next time awake. She is usually put to sleep for this, so wish us luck!

Thanks for checking in on us. Things are pretty calm here with Carly and her care...thats the way we like it:)

Chris

Sunday, July 15, 2007 12:53 AM CDT

Hello,

Carly will be having her regular 3 month MRI tomorrow to check for tumor growth. It will be a long day for her with an appointment at 9am with her doctor and the MRI scheduled at 12:30pm under anesthesia (which means nothing to eat or drink for her until ater her test). The MRI usually lasts about an hour, then off to recovery for about an hour and then home. I will post when we get the results. Please continue to pray for stable tumors. We are now 9 months off of chemo. Carly has begun getting her vacinations again. The chemo has wiped out all her vacines she did as a baby. She gets about 5 shots every 6 weeks until she is caught up. Her vission continues to be good, she gets checked every 3 months.

The Rock N Roll Marathon is now past and we all survived it! I ran it in 6 1/2 hours. I hit the wall at mile 23 and walked until mile 25, where I somehow pulled it together and ran the last mile in. I would love to cheer you on next year:)

Our next event for the NF Marathon Team will be October 14th in San Jose for a 1/2 marathon. I will post information on that soon for those interested in joining us!

I hope you are having a great summer!
Chris

Thursday, May 31, 2007 11:35 PM CDT

Hello,

Just an update on how things are going here. Carly is just about ready to finish kindergarten. She had a great year and reached all her milestones! She is now 6 months off of chemo, port a cath has been removed, has had 2 MRI's of the brain and one of the full spine, and she continues to be blessed with stable tumors in her brain and none in her spine!

We are very optomistic for her future, but also realize the uncertanty of NF, so we will be vigilant and keep up all of her care and keep raising awareness and research $$ for NF and the tumors it causes.

We are headed to San Diego this weekend for the Rock N Roll Marathon! Third time is a charm I hope, because this will be my 3rd crack at it! The first year I walked 18 miles of it, last year I walked the full 26.1 and this year I decided to train, 16 weeks of training, and I am as prepared as I can be to run 26.1 miles of pure fun :)

I will let you know how things go with our team this year and post our next run if you want to join us!

Below is my fundraising site if you would like to make a donation.

http://www.active.com/donate/nfsandiego2007/CMcKay3

and here is a short video clip made from last years run..check it out Carly is adorable.

http://www.digitalstandard.com/marathon/marathon.html

See you at the finish line!
Chris

Saturday, February 10, 2007 11:03 PM CST

Hi Everyone, I thought I would dust off the cobwebs from Carly's site and update it. I figured it was time for the Christmas trees to change into Valentine hearts.

Carly has been doing great and playing on her first team sport- soccer! She is getting stronger every day off of chemo.

Her next MRI will be in April. She will have her usual MRI of the brain, and an additional MRI of her entire spine. The last one of the spine was 2 years ago. After seeing her neurologist last week, he would like to have the scan of the spine to maybe help explain her continued weakness on her left side, which could be caused by tumors.

She will see her pediatrician next week and begin the process of re-vacinating with ALL of her vacines she received since birth. The lovely chemo wipes out all vacinations she has had to date.

Carly will be having her vission tests in March. Please continue to pray for stable vission and stable tumors.

ALSO, it is that time of year again. We are lacing up our shoes for the Rock n Roll Marathon in San Diego this June! Anyone crazy enough to join us, we would love to have you walk or run either 18 or 26 miles! Or come cheer us on! Last year the majority of us "walked" the 26 miles, and I say never again! Way to long on the course. This year I am going to run and finish the full 26...really, I am not kidding. Rob ran it last year in 4 hours!! More importantly than the finish line and the sweet medal! is spreading awareness and raising money for research--lets solve the puzzle of NF!

Thanks again for all of your prayer and support,
Chris

Tuesday, January 9, 2007 6:02 PM CST

Carly's MRI was stable! They compared this MRI to the orrigional one and three other previous MRI's and the results remained stable!

Carly's next MRI will be the first week of April. She will also have her Neuro-Opthamology, Endocrine, Neurology and dermatology appointment in the next few weeks.

Thanks again for all of your continued prayer and support.

The McKay Family

Saturday, January 6, 2007 11:29 AM CST

Carly did great getting her 3 month MRI yesterday. She had lab work done that showed her counts have all returned to normal again. We are asking that the scans not only be compared to the previous MRI, but back to the first one in May 2004 also. Please keep Carly in your prayers that there has been no tumor growth since being off chemo now for 3 months.

I will post when we get results, probably around Wednesday.

Thanks again for your continued prayer and support for Carly and all of our NF Heroes out there!

The McKay Family

Friday, December 15, 2006 8:42 AM CST

Hi,

Carly's next 3month MRI will be January 5th...we are obviously going to be anxious about this scan, as it is the first one she has had since stopping chemo in October. Please continue to pray for stable tumors for Carly.

Carly is doing great and is looking forward to playing on a soccer team in the next few weeks, since she has her port a cath out, she can play all the contact sports like other kids...and she is very excited.

Thanks for checking in on us....I hope you have a wonderful Christmas!

The McKays

Saturday, November 25, 2006 2:48 PM CST

I hope everyone had a great Thanksgiving. We have so many things to be Thankful for this year, one of them being Carly's end to chemotherapy! She had her PortACath removed the Tuesday before Thanksgiving. It was an outpatient surgery and she did great. She continues to heal from the surgery, it has not slowed her down any. Infact, it was almost impossible to get her to rest and take it easy.

We will continue with her MRI's every three months, along with vission checks with her neuro-opthamologist and the many other specialists that follow her NF.

I know my updating on this site has slowed down from what we used to do over 2 years ago...and as long as we continue with such thankfully uneventfull doctor checks, I will only be updating after her MRI's. Her next MRI will be the first of January...and we will be nervous for that because will have been of chemo for almost 3 months at that point...please continue to pray for stable tumors.

We know that Carly's tumors may grow over the years, and additional treatment may be necessary. We also know that God is faithful and He is bigger than all of this and we "can do all things through Christ who strengthens us", Phillipians 4:13.

Wishing you and your family many blessings this holiday season!

The McKay Family

Friday, October 13, 2006 1:25 AM CDT

Hi Everyone...I am so sorry I have not posted since our big appointment last week. We actually have big news that I have not shared yet.

We have decided to give Carly a break from chemo. We had a long discusion with her oncologist, and she is at the end of her 2 1/2 year plan. She is also starting to develop some toxicity to the chemo, that affects her nerves and she has been falling alot because her foot "drops" and makes her trip. At first we thought it was her eyesite.

PLEASE continue to pray for stable tumors for Carly, we are far from the end of our battle. We are scheduled for a consultation with the surgeon to take her port a cath out. This will be an outpatient procedure.

Our plan is to do MRI's, Eye appts, every 3 months (with the next MRI at the end of December). If at some point her vission begins to deteriorate, or the tumors begin to grow, our doctor has suggested radiation as the next step and has referred us onto a radio-oncologist to speak with to be prepared in the event that happens.

Carly is very happy to not be doing "tubies" anymore. She hated missing school. I can't believe she was 3 years old when this all began, and on Monday the 16th she will be 6! She was such a baby when this all began.

Thank you for continuing to check in on us and praying for Carly's battle with NF.
Chris

Friday, September 29, 2006 2:24 PM CDT

Hi Everyone...

Carly had her MRI yesterday and chemo. We received a preliminary result late yesterday and it sated, "no significan change-stable". We are happy for that and will be meeting with her Oncologist to determine the next course of her plan.

Please pray for us to make the best decision for Carly's care. The doctors will not give us a "stop" or "keep going" answer. Only, that we could go either way.

There are no long term studies, like most cancers, that have a pre-determined best course of action for Carly's type of tumors and her NF1.

We, unfortunately, are the long term study for families in the future.

I will be meeting with some NF specialists in Los Angeles to get a second opinion, along with her doctors here in San Diego...until a decision is made we will continue with her weekly chemotherapy along with her other specialists that see her and the 3 month MRI's.

Thank you for your continued prayer for Carly and support! It is greatly appreciated.
Chris

Tuesday, September 19, 2006 0:47 AM CDT

Sorry I have not posted in a while..busy with back to school, work and doctor appointments.

Carly had a visual field test that did show some "blind spots", however it will take a few tests to get a good pattern on just what this may mean for her. Her teachers have noticed some "tracking" issues with her in school on reading along with them.

Carly has a big MRI on Sept. 28th..keep those prayers coming for stable tumors. We had thought of stopping chemo if they are stable, but now with the poss. vission issues, her neuro-opthamologist said there is increased paleness on the left optic nerve, so we need some second opinions on her chemo plan.

On a happier note! We are off to Unniversal Studios in Florida for a work/family vacation! The kids arep excited, we will be staying at the Hard Rock Hotel in the park...Carly can't wait to fly (I can).

Back to school for Carly has gone smoothly. She had her IEP plan done and will be getting an hour a week of Adaptive PE...this will be great for her, as she has had so much weakness on her left side from chemo and NF. The school is also working very close with us and informs us when any kids have come down with any illnesses, so we can monitor Carly for fevers, etc. If the teachers see that she is getting too tired to focus in class, they send her to the nurse for a little resting break...she likes to see the nurse, but she hates to miss class.

Overall, things are going great...Kyle is the kicker on his JV Football team, and a really hard hitter. His coach said he has never seen a kicker hit so hard..they also have him starting line defense. Kaitlyn is doing great in school and very active in the ASB at her school..and is helping to do a fundraiser for CTF with the JR High School.."silver wars" where each grade donates change and the class with the most will win a prize..Carter is starting roller hockey, a new sport for him, and it should be alot of fun to wath..he is still trying to get the hang of skatting.

Thanks for checking in on us..will post pictures on our trip to Florida..the first thing Carly wants to do is ride the Cat in the Hat ride :)

Chris

Friday, August 25, 2006 10:12 AM CDT

Hey...just a quick update. Today is Friday and Carly is almost done with her first week of kindergarten. She has had a BLAST, and hates missing the one day a week for chemo. Her teachers are great and send her with work to do at the hospital. She has been VERY tired though...and that results in her tripping alot, and she wont slow down, even when she is tired.

Her chemo dose was upped because she is now taller and weighs more than she did a year ago when the dose was assigned.

Her next chemo day is next Wednesday, and on Thursday she has an appointment again with her neuro-opthamologist for a visual field test. This will be a big test, to see if she is loosing her peripheral vission...which the doctor suspects and that is why he has the opinion of not stopping chemo in October, even with a stable result.

Thanks for checking in on Carly...please pray for again stable tumors and great vission...Carly needs a break!

Thanks, Chris

Saturday, August 19, 2006 7:50 PM CDT

Hi Everyone...Carly is getting VERY excited to start kindergarten in a couple days! She keeps saying, "what if I miss you"...okay, break my heart. I keep reasuring her that she will have the best time and wont be missing us...but what if I miss her....

We had an appointment with Carly's Neuropthamologist. The report is her right optic nerve is showing increased paleness and the left appears to be the same as her last exam. When I told the DR of our plan to stop chemo in October if her next scans were stable and his response was, he would not stop chemo. I was a little taken back by the response and didn't think to ask why???dumb. I am left to assume he was referring to the increased paleness of the nerve. I will find out soon enough because he wants us to schedule visual field test for her in a few weeks. I will make sure I get all the questions across at that time.

We will be seeing the NF Clinic DR for a second opinion soon.

Thank you for your continued prayer for Carly.

Blessings, Chris

Friday, July 28, 2006 2:36 PM CDT

Hi Everyone,

Carly is doing great and continuing with her weekly chemo injections. She has her next MRI scheduled on September 26th at 11:30 am. This will be a big MRI, because another stable MRI will end this journey of her chemo that she began at age 3, now 5 and going into kindergarten. You can imagine there will be a big celebration! It is almost overwheling to write the words down, that an end to chemo is coming. I try not to focus on the fact that she still has the tumors that have led to 2 1/2 years of chemo....and be hopeful that these two years have stopped the tumor growth forever.

Thank you for your prayers, support and friendship through Carly's journey....it has meant alot to the McKay family.

Will update soon, Chris

Saturday, July 1, 2006 11:12 AM CDT

Happy 4th of July!

Great news from our doctor late Friday night, no tumor change. Not sure what was causing her headaches, but apparently a $7,000.00 MRI is the cure. haha.

Since her MRI she hasn't had any forehead or headache pain.

She will have her next chemo appointment on Monday, still weekly. Not sure how this MRI affects her normal schedule, she wasn't due for one until the end of July and then again in October when we would probably take her off chemo if the scans still showed stable tumors.

I hope everyone has a fun and safe July 4th. I remember 2 years ago on the 4th I was in tears when Carly was watching the fireworks and wondering how many more years would she have to see the fireworks, would the tumors take her vission....praise God for stable tumors!

Chris

Wednesday, June 28, 2006 3:34 PM CDT

Hi Everyone, sorry I have not updated in a very long time. Carly was due for her 3 month MRI in July, however at chemo yesterday I told her doctor about headaches she has been having, so they wanted to do the MRI ASAP, and she had it done at 9:30 am today. I will hopefully get the results by late Friday or at her next chemo and doctor appointment on Monday the 3rd.

Carly has been really tired lately and her ANC has been low the last couple of weeks in the 500 range...but are working themselves back up.

will post again soon.

Chris

Thursday, May 4, 2006 12:55 AM CDT

Hi Guys,

Carly's MRI showed again stable tumors, no significant change. This month is her 2 year mark of weekly chemotherapy, MRI's every 3 months(a total of 10 now!) under anesthesia and no significan vission loss.

Our plan is to continue weekly chemo until October. Between now and October, we will have 2 more MRI's and if they continue to show stable, we will be giving Carly a break from chemo at that time.

She also had a Neuro-Opthamology appointment that showed her right eye to be fine and her left eye still at 20/40 with her optic nerve looking pale.

The dirrection our Oncologist has given us is, if the tumors should begin to grow at a later date off chemo, radiation would be a possible next step..so the older she is if radiation is needed, the better as far as neurological problems it can cause. The other downside of her to ever get radiation, is a significant increase in the chance of developing a secondary cancerous brain tumor, lets pray we are never faced with having to do radiation. Having NF puts Carly at a higher incidence rate of developing leukemia, being on chemo raises the rate even more.

Thank you for your continued prayer, support and love for Carly,

Chris

Monday, April 10, 2006 11:29 AM CDT

Hi Everyone,

This week is Carly's spring break, and the doctors just cleared us for a week free of chemo so we are planning to go do something fun and get away...last minute as usual.

Carly is rescheduled for next Wednesday the 19th for a full day of chemo, lab work and doctor check..Rob will be taking her for that because I will be on a 3 day overnight field trip with Kaitlyn's entire 7th grade class on a science trip...wish me luck!

We have an MRI date of Wednesday the 26th. It will be a very LONG day for Carly, please pray for her that day. She will start with her chemo appointment at 9:30, then check in for her MRI at 11:30 with an MRI scheduled time of 1:00pm..and because it is with anesthesia she can't have anything to eat after midnight on Tuesday.

It will probably be the week of May 1st that we get her MRI results and at that point if all is still stable, the options of continuing or stopping will be discused.

Thank you for your continued prayers...have a great Easter.

Chris

Monday, April 10, 2006 11:29 AM CDT

Monday, April 3, 2006 10:16 PM CDT

Hi everyone,

Carly will have her next chemo appointment this Wednesday. I will try to find out then when her MRI is this month. She also has an appointment with her Neuro-Oncologist at the end of the month....these will be big appointments, if all checks out stable, then we may get to take a break from chemo on her two year mark in May.

Carly has now lost her 6th tooth??? She has 3 missing on the top and 1 missing on the bottom....will get a photo on the site to show you...pretty funny. I would be worried that at 5 she has lost so many, but you can see the big teeth starting to come in...so it was time for them to fall out...not a chemo thing making it happen.

Take care, Chris

Thursday, March 16, 2006 4:09 PM CST

Hi Guys,

Carly and I just got back from her chemo appointment today. She had lab work done, which was fine and a doctor check. Since we are almost at our two year mark now, April 2004, and she has an MRI next month, I asked my famous question of "when should we stop chemo".

Well....after asking this question so many times and hoping for the answer of sooner than later, I finally got the sooner I have been wanting and it really makes me nervous!

Because she has not had any tumor growth, we thought it had shrunk a little, but the radiologists can't seem to agree, so we may push for a third opinion on that question, and her vission has remained great with no problems, our oncologist said if all the next tests turn out great as in the past, we can look at stoping chemo in May.

What that would mean for Carly is, she would continue with all of her MRI, Vission, Neurology appointments on a 3 month basis for about a year, and then possibly spread them out to 6 months checks and finally once a year. At any point if there were tumor growth, we would begin chemo again. Because NF is so unpredictable, we have no reason to believe they will ever grow again, or that any new tumors will arise.

Please pray for us to make the best decision for Carly's care on her chemo plan and for continued stable tumors forever.

I will let you all know when this chemo plan is over and would love for you to come celebrate with us!

Also, we are so excited for Carly, she just took her kindergarten test to attend the school that her brother's and sister go to, and passed! She is allready known on the campus because of her cheering (all by herself see photo above) at Kyle's football and soccer games and at her sisters soccer games..........next year will not come soon enough for her when she can attend cheer camp with the cheerleaders.

Thanks, Chris

Saturday, March 11, 2006 11:44 AM CST

Hi Everyone,

Carly was able to get her weekly chemo this last Thursday. She is feeling much better after her cold she had. Her next chemo/lab/doctor check is next Thursday. I will be asking then about her next MRI coming up in April- I can't believe it is almost time for her 3 month check again. April will be 2 years since we began all of this- Carly was just 3 years old and from the begining she has never complained, cried, or gave the nurses a hard time when they accessed her port a cath or take the needles out. There was another little girl there this last week, 3 years old, and really affraid of the needle pokes and getting chemo- and watching her it reminds me of just how little Carly was and now she is so much older and ready for school- she was such a baby when this all began. She thinks that everyone does what she does- she doesn't know what it is like to not do this. I need to video tape her days at chemo now. The room is full of gurneys with a chair beside each one and a TV mounted above the bed to pass the time for the kids. We used to sit and play games, watch TV, have lunch, whatever, to pass the time. Now I sit alone as Carly goes from bed to bed talking to anyone and everyone. The nurses now give her small jobs and she helps get other kids chemo stuff together, or runs down to the pharmacy or lab to drop stuff off. I heard her tell one of the nurses last week she was going to be a nurse and give kids their "tubies" when she grows up, I really think she will. One day at preschool she was playing with the oversisized legos and while other kids were building towers, houses, etc...Carly was building a contraption that she stuck her head in and said, "look Mom, an x-ray machine". She can frequently be seen using toys to check other kids heart, listening to their breathing or giving them their "tubeies".

As much as I can't wait to be done with treatment, I can't imagine our lives without weekly trips to Children's Hospital. I look forward to our 3 hour drive each week, it gives me a chance to focus on what is really important and the time we spend in clinic is humbling.

On another note...Carly just lost her third tooth. It is one of her top front teeth and she looks adorable. She was child of the week at preschool last week and she shared her snoopy her stuffed animal, pictures from her make a wish trip to disneyland and her "ducks" jersey that she wears to the hockey games-

Please keep Timmy and his family in your prayers www.caringbridge.org/nj/timmyp We have to keep storming heaven for a miracle.

And visit Genna, she just had some awesome answered prayer on her tumors, check out her site and say hellow at
www.caringbridge.org/nj/gennahenna.

Thanks for checking in on Carly,
Chris

Tuesday, February 21, 2006 9:33 PM CST

Hi Everyone, I have not posted about Carly's weekly chemo visits on a regular basis for a couple of reasons, one is things are going so smooth there isn't much to say other than we go, we get chemo, we go home and it doesn't seem to affect Carly. And the other is, the more I don't post, the more our life seems back to the days of no weekly visits. We are now in our 21 months of weekly chemo that Carly began when she was just 3, she is now 5 and getting ready for kindergarten next fall. I don't feel like there is an end in sight, I don't even ask that question to our doctors anymore, which I am sure they are glad, because it was a weekly question from me.

Carly is however sick today and wasn't able to get her chemo. She has had a cough and fever and after xray-s and lab work today, we have found out she has bronchitis and is on antibiotics and a strong cough medacine. They get concerned with a fever for her, because of her port a cath- and if her counts were low today, she would have had to stay the night in the hospital, which she would have loved- because she likes to talk 24/7 and would spend her time calling down to the nurses station asking questions. I can't get mad at her, she is so cute, even after keeping me up for the past two nights with her cough and throwing up..still cute but now I have special medicine that I can knock the cutness out tonight and get some SLEEP.

We are scheduled for chemo again next Tuesday. Thanks for checking in.

Chris

Tuesday, January 10, 2006 6:24 PM CST

Carly's MRI this last week showed again "stable" tumors. Thank you again for your continued prayer for Carly. We are continuing our plan of weekly chemo/lab work.

Carly has gotten an MRI every three months since her diagnosis in April of 2004.

Carly has gone for chemo treatments weekly since May of 2004.

Because Carly was only 3 when this all began, she doesn't remember what it was like to not do this.

Carly thinks every 5 year old endures and is doing what she does.

Carly has never once complained about the needle pokes, long days at the clinic waiting to see the doctor, waiting for her blood to be drawn, waiting to get her chemo. The long hours of nothing to eat before being put under anesthesia for her MRI's. Visits to numerous doctors for her vission, hearing, neurology, endocrinologist.

She, along with all the other kids and adults fighting NF, dserve a cure. I hope you will consider joining us in our "run for a cure" again in June of 2006 at the Rock N Roll Marathon in San Diego.

Matthew will once again be there in his fight for himself and all of us for his 2 mile walk of the course. His training has now begun and he could use some encouragement. PLease stop by his site and wish him well, and that you will join in the fight with us!

www.caringbridge.org/visit/matthewleibowitz.

This year he has dedicated his walk to Carly and Destanie. I have promised Matthew I will be back again also. Last year I completed 18 miles of the marathon......my goal in June is to run/walk the full marathon.

Chris

Tuesday, January 3, 2006 3:54 PM CST

Happy New Year!

Carly had last week off from chemo. She had her usual chemo appointment today with no problems.

Our next MRI is Tuesday the 10th at 11:30am- I will post the results as soon as I get them.

Wednesday, December 21, 2005 12:07 AM CST

Merry Christmas!

Rob took Carly to her chemo appointment yesterday. She didn't have lab work or a doctor visit, so it was a somewhat quick visit. We are taking next week off from chemo-yeah.

Carly's next MRI scan will be in January. The kids are excited for Christmas and allready got their order in to Santa-

Thank you for your continued prayers and support.

Monday, December 5, 2005 10:51 AM CST

Carly has been doing very well with her weekly chemo injections. She just had an eye appointment with her neuro-opthamologist and her vission remains 20/40 and 20/30. The only thing new is her optic nerves are now looking "pale". Not sure what that means for the future, but it is an effect of the tumors on her optic nerves.

As far as chemo duration, three doctors have now said to keep her on weekly chemo, and not stop at this time, because she tolerates it so well. She has now been on chemo since May of 2004-18 months! We are excited because she will get a week off at Christmas.

Carly's next MRI will be in January. Have a great day, thanks for checking in.

The McKay's

Friday, November 11, 2005 12:23 AM CST

Hi,

Sorry I have not update in a very LONG time. We have been busy with Kyle on the JV football team...he has been asked to be the back up kicker for Varsity in the playoffs this next week..we are really excited for him!

Carter has been playing flag football and now starting basketball...so our weekends are non-stop sports.

Carly's MRI of the brain came back stable tumors again, and the spine was clear of any tumors. We are thankfull for the results and are continuing with weekly chemo at Children's. Her next MRI will be in January.

Now that we have been going for chemo treatments for 18 monhts, and approaching our second Thanksgiving, second Christmas at the hospital for chemo...it is really starting to feel like this is not going to end anytime soon.

Carly handles all of her treatment with no complaints and a constant smile........I don't know how she does it.

Thank you for your continued prayer and support!

The McKay Family

Wednesday, October 12, 2005 10:08 AM CDT

Hi Guys,

Yesterday was a LONG day for Carly getting her MRI. She couldn't eat or drink until after exam...and they were running late..but she hung in there.

We arrived at Children's for her Chemo at noon. Then checked into day surgery for her MRI that was supposed to be at 3:00pm, but ended up going at 4:00pm and lasted almost 2 1/2 hours. After being asleep for so long, she took an hour to wake up, then another 45 minutes in recovery....we finally got home at 9:15pm last night. Did I mention it was a LONG day!

They did the MRI of the brain, orbits, neck and full spine. I am hoping to get the results by Friday.

Some of you know about Destanie. We met her and her family through the San Diego marathon last June also running for the Children's Tumor Foundation. Destanie also has NF1 and tumors on her spine and by her lung that they have been watching. Well, yesterday just before Carly was going in for her MRI, Destanie got her results of an MRI she had just done. They have now found she also has optic gliomas, plus an additional tumor in the brain. The tumor she has by the lung may be of concern and it may have to be operated on. Please keep Destanie and her family in your prayers. It is such a scary time for them...Destanie is 4 years old like Carly and we are doing the Long Beach with them this weekend. There will be 12 of us on "Carly's Team" and 9 on "Team Destanie" this weekend. If you can, please join us, and keep these little ones in your prayers.

Thanks, Chris

Thursday, October 6, 2005 9:51 AM CDT

Hi Everyone, I hope you checked out our new photos on this website........I think the kids looked so cute for Mandy and Dave's wedding. We had a great time and Carly LOVED being the flower girl, it is all she talks about. Mandy was the prettiest bride I have ever seen. Alot of people thought Kaitlyn was 18 with her hair and makeup done..help..no makeup for her for a long time..they couldn't believe she was only 12-me either.

Carly had her doctor appointmen and chemo yesterday. It was her physical before her 3 month MRI this next Tuesday the 11th. Please keep Carly in your prayers........besides doing their routine MRI of the brain and orbits(eyes), they have added one of her neck and full spine, because she has had a lump on the back of her neck. his lump has been checked out by endocrine, and they found nothing abnormal. But the lump is still there. I wasn't concerned thinking it was from her weight, but the doctor said the lump is not centered on her spine, off more to one side, so they will be checking that out now along with the entire spine.

Her MRI was orrigionally scheduled for 11:00 am that day, but has now been moved to 3:00pm because she needs a longer time slot for the additional tests. The problem with a later time slot is, Carly has to be NPO(nothing to eat after midnight) before her MRI as she is put to sleep for the tests.........this will be a LONG day for Carly.

I will post when we have the results, usually takes a few days..........hopefully by Friday of next week, before our Long Beach Marathon........not too late to join us!

Take Care, Chris

Saturday, September 17, 2005 11:22 PM CDT

Wow, we have not updated in a long time! Carly is doing great. She is going to pre-school 3 days a week and loves it. She has now lost a second tooth! Her two front bottom teeth are missing now, very cute.

She has been doing her chemo on Tuesdays now and has not had any problems. We have an appointment this Wednesday for a second opinion with a neuro-oncologist at an NF clinic in LA- we just want to double check on the length of chemo time for Carly, since her scans have been stable since the begining of treatment.

We have also been scheduled for her next MRI in a few weeks-can't believe it is that time again.

We are getting ready to head to Tahoe for Mandy's wedding in two weeks! Carly will be the flower girl, Carter an usher, Kyle and Rob will stand up with Dave and Kaitlyn and I are bridesmaids- it will be a really pretty wedding in Tahoe with a view of the Lake, perfect place to get married! Now all the McKay kids will have gotten married in Tahoe- we were married in Tahoe(15 years ago!), Mindy and Cam were married there also(12 years ago) and now Dave and Mandy.

I will post again after the second opinion on Wednesday, Chris

Monday, August 22, 2005 5:36 PM CDT

Carly had her chemo with no problems last Wedesday and is scheduled again for this Thursday the 25th- were she will get lab work and a doctors check this time. Her vission exam came back great and we are not sure what is causing the eye pain???

We are in Marathon Training mode again for the Long Beach Marathon/Half Marathon/5K on October 16th- Carly's 5th b-day. Click on the links listed below for more information on the marathon and to check out our fundraising page.

Take Care, Chris

Tuesday, August 16, 2005 5:53 PM CDT

Sorry I have not posted alot lately, we are so busy this summer. Carly will go for her chemo tomorrow and also has an appointment with her neuro-opthamologist. She has been having eye pain, not sure what that means yet, if anything. It may be she has been having headaches that feel like eye pain to her. We are not overly nervous yet because her scans came back stable just a few weeks ago. Will post when we know something more.

We also have an appointment for a second opinion in a few weeks with a neruo-oncologist to determine the length of time Carly should stay on chemo with stable scans---we are now 15 months into weekly chemo injections.

Thanks for checking in on us, your prayers and words of encrouagement mean so much.

Have a great day! Chris

Sunday, July 24, 2005 11:12 PM CDT

Hey exciting news here............Carly just lost her first tooth while eating corn on the cobb at her aunt Mandy's and Uncle Daves house. She is so excited and can't wait for the toothfairy to come tonight......I really need to get a picture of her new cute smile on her site.

Of course my first thought is that the chemo is making her teeth fall out. Her tooth was never even wiggly? I am so paranoid with anything that happens with her. All my other kids lost their teeth around 5, and she is only 4?

Anyway, lots of excitement tonight.

Saturday, July 23, 2005 9:42 AM CDT

We got the results yesterday that Carly's MRI is again stable, no change, and nothing new showing up- all great news and I still can't help being dissapointed that she still has tumors. We get the results over the phone so casually like we are taking about an everyday occurance. After 14 months of this the reality that Carly will always have brain tumors is becoming more and more of a reality. This sucks. I noticed how "routine" our life around chemo and MRI's have become. In the begining Rob and I would both take Carly for her MRI's, get teared up when the doctor says to give her a kiss on the cheek as they put her to sleep in front of us, then wait on edge in the waiting room as she gets her tests done and hurry to recovery to make sure we are the first thing she sees waking up..........now 7 MRI's later I take Carly by myself, bring plenty of magazines to read to pass the time and watch anxious parents waiting for their child getting tests, surgery's, ect, and I find myself telling Carly in recovery- hurry up, wake up, lets go, things to do....There was a little guy who was getting an MRI right after Carly of his leg, nothing serious, and the Mom and Dad along with their other two kids were there and anxious, worked up and nervous over him getting put to sleep and getting his test and the whole hospital setting......so when the Mom saw how casual I was about the entire process of checking in, waiting, sending Carly off on her gurney, the Mom finally said "what is she having an MRI for", thinking it would be something along the line of her son.......so when you throw out "brain tumors" you get the standard shocked look and mouth falling open- and you can't leave them looking like that so you have to play it up like it is no big deal- she is fine-tumors are stable, etc, etc...again, this sucks.

So we will continue our plan of weekly chemo and her next MRI will be in October. We will have a vission exam coming up soon also.

We are still planning on doing the Long Beach 1/2 Marathon on Carly's B-Day- October 16th to continue to raise money for research and awarenfess for Carly's NF, we HAVE to find a cure, there is no other option- please consider joining us, it is alot of fun!

Thanks for checking in on us....The McKay Family

Tuesday, July 19, 2005 9:00 AM CDT

Hi Everyone,

Sorry I have not updated since our vacation- it has been crazy around here with no end in site until school starts again!

Tomorrow is Carly's MRI- please pray for stable tumors- or no tumors would be nice. We have to be there at 8:30 am to do a history and physical, chemo, lab and then check in for her MRI at 11:30 am- all of this with nothing for her to eat or drink after midnight- poor kid. She usually starts rumaging through my purse around 9:00am for food.

Our vacation was alot of fun and I will try to get pictures online today- we all caught fish- even Carly- but she wanted to keep them- and take them home.

Have to run and get Kyle to football practice- they have started "conditioning" for two hours every morning- so no sleeping in.......and Carter has started trumpet lessons this week, which he loves so far.

will update later, Chris

Wednesday, June 29, 2005 10:55 PM CDT

Carly had her chemo appointment today and it went fine, just some low blood counts- but she is cleared for camping this next week! To go "pole fishing"- she can't wait, she wants a Barbie Fishing Pole- but does NOT want to catch any sharks.

We also had a dermatology appointment today. Besides her normal cafe au lait spots and bumps checking out fine- I pointed out a new bump to the doctor. We are told this new bump- it looks like a yeloow/red mole on her stomach- is a Juvenile Xanthogranuloma or JXG. Which in a non NF person is not a big deal. In an NF person it raises their Lukemia risk to 30 to 40%- The Lukemia it is a concern for is Juvenile Chronic Myelogenus Lukemia or JCML-

Just having NF puts you at a higher risk of cancers. Being on the chemo that she is on with NF puts her at an additional risk of Lukemia, now with the new findings there is an additional risk for this JCML.

Please keep Carly in your prayers that she will never have to deal with any of these cancers- She also has an MRI on July 22nd, please pray for stable tumors and to stop the chemo! Carly would want you to also pray that she catches a fish, not a shark.

We are headed for a week and a half camping trip with our good friends, The Bouchers-

I almost forgot to mention this.........I was just asked by Steve Kendra, head of the NF Marathon Team, to join their NF Marathon Advisory Council- it is an honor and I can't wait to see what the future holds for research!

Thursday, June 23, 2005 9:34 AM CDT

Hi Guys,

Carly had a special treat for her chemo yesterday! She had a quick appointment- no lab or doctor check this time. Rob took her along with her brother's Kyle and Carter. I called in "sick". I have had a cold- and being in a room with kids who have no infection fighting cells is not a good idea. So I felt a little guilty not taking Carly at first and having the whole house to myself- but I soon got over it. ha ha.

We just had the newspaper and a photographer come to our house on Tuesday to interview Carly and us regarding the Rock N Roll Marathon- I forgot that when I signed up for the Rock N Roll Marathon there is a section where you can write to them why you are doing this race, and I entered Carly's story. We got a call from a guy with the RNR Elite Racing team, saying out of thousands of stories submited, they chose Carly's to do a cover story on- WOW.

The story will appear in three different papers on July 22nd. We are very excited to be getting the word of NF out there and hopefully get more interest in the NF Marathon Team.

We are also excited because at next years RNR Marathon we are going to have a booth at the Expo! which means one of the NF Marathon Fliers will be in each participants bag- and we can raise alot of awareness at the booth. It is all good!

Have a great day!
Chris

Monday, June 13, 2005 7:37 PM CDT

Hi Everyone!

We had our appointment at the NF Clinic in LA. The doctors (neurologist/genetics) were very helpful and checked Carly out from head to do. Carly was her usual funny self. We will follow up with them on a yearly basis or sooner if needed. We are being referred by them to their NF Oncologist to review Carly's 3 year chemo plan. Hopefully we will get to see the doctor in the next few weeks.

I did ask for the blood test to determine if Rob or I had NF or if Carly's case is a spontaneous one. They said that we would have Cafe-Au-Lait spots, and we do not- so they are 99.9% sure we do not have it and can assume Carly is the first in the family to have NF.

We will be heading to chemo on Wednesday. Carly's MRI is now officially scheduled for July 21st- and we will be anxious to get the report on that-

As you can see we are getting geared up for Long Beach- to do a half-marathon. We will be holding an event this time to raise money for NF research- if you have any ideas or suggestions, please feel free to email!

Thanks, Chris

Thursday, June 9, 2005 0:15 AM CDT

Well....back to our normal routine after a very emotional weekend. Carly saw the doctor and had lab work and chemo today. The only problems she is having is she is really tired lately. Pre-School wipes her out- she sleeps the rest of the day and she keeps wetting her pants- she just can't seem to help it. Her ANC is around 1600 as usual.

She will be having her next MRI in mid July- lets keep praying for stable tumors- Carly needs a break from the chemo- I need a break from the hospital.

We are going to an NF clinic finally on Friday. Childrens of LA- I am going to take Carter also- I have a gut feeling that he may have NF......Rob and I are going to get tested- and if one of us test poss. for NF, then we will have the kids tested. It could be a spontaneous case with Carly, we will find out soon enough.

I can't believe one week until summer break. Kyle will be graduating from Jr High- I will have a high schooler- eek. Kyle had a great year, and Jr High experience. He was an awesome soccer player and football player, we are looking forward to watching him play high school sports.

Kaitlyn will finish her first year of Jr High- she did awesome 4.0 all year long and played on the Jr High soccer team with Kyle- Rob coached.

Carter is finishing his first year at Linfield Christian Elementary and loves it- off to the 3rd grade now. He has such a kind heart and has fit in well. He will be learning to play the trumpet this summer through the school and be in the band at Linfield.

Carly is finishing her half a year at pre-school and will continue in pre-school next year in Ms. Vikey's class. She continues to learn new things each day and is always eager to share her love for the Lord with anyone who will listen.

As for me, I have turned Matt's passion for a cure into an obsession for a cure for me. I can't wait to get my running shoes on and get ready for Long Beach!

There is no way I could ever thank you all enough for your kindness...

Chris

Friday, June 3, 2005 3:24 PM CDT

Hi Everyone!

We are busy getting last minute things ready for the Rock N Roll Marathon weekend to raise money and awareness for NF. We are excited to say we have a team of 150 representing "CARLY'S TEAM"- with the first 100 being Carly's Pre-School who did the Cupcakes for Carly and raised $4044.00 for The Children's Tumor Foundation- WOW. The other 50 consist of runners/walkers and course volunteers that together we have a raised around $17,000.00! How cool is that.

We will be meeting 9 other NF Heroes at tomorrow nights Pasta Dinner put on by the CTF. This weekend will be fun, emotional, physically exhausting and well worth it all.

We all know that the finish line will be bittersweet on Sunday- but that much closer to a cure.........if you were unable to join us this time, we are considering our next marathon/half marathon on October 16, 2005 in Long Beach (Carly's Birthday).

Thank you all who have donated your time, love and support for our team this weekend- we are so blessed.

Love, The McKays

Friday, May 27, 2005 7:51 AM CDT

Hi Everyone,

If you are a local here in Temecula, check out the Californian newspaper in the local section and you will see Carly! The paper covered "cupcakes for carly" relay that her pre-school did to raise money for the Childrens Tumor Foundation for NF. Which they did an awesome job and raised around $3,700.00! They were so adorable, I am going to get pictures on this site today so check back. I am happy that they covered the story and mentioned two of her teachers, and NF...BUT the title of the story really bugs me..."Team to run for sick girl." I know it is part denial for me and the other other part is they have to get the attention of the reader to read the article.. BUT BUT BUT, oh well. I am happy to get the word about NF out there.

Hope you have a great Memorial weekend- we are in marathon planning mode...personalizing around 55 shirts with "Carlys Team" on it and last minute training ha ha.

I have an email dated Jan 5th to the Childrens Tumor Foundation asking for information on their marathon team because THREE of us would like to take part in a fundraising marathon with Carly in a as hour NF Hero. Our goal was to have 36 on our team- with each person to reperesent a month of chemo that Carly will do, and now five months to the day, June 5th, we are honored to have the love and support of over 150 people on Carly's Team who have given their time and efforts and as of yesterday has raised around $13,000.00 ! ! !

I give all the praise to God, it is His team he has put together, I would like to think I could get so many people to do what I say ha ha, but the best part is, it wasn't me. The real story in the paper should be about the "Team", of which 100 on the team are her classmates that really "get" why they were out in the hot sun running, not for cupcakes, but for their little friend..okay now I am crying. Her team is made up of people who have loved her from the minute she was born to others who have yet to meet her, but were drawn to her joy.

We are SO blessed.

Have a great weekend, love the McKays

Thursday, May 19, 2005 2:18 PM CDT

Hi everyone.....it is count down time at our house for the Rock N Roll Marathon and I am freaking out a little bit. Those 18 miles will be a little brutal- but we have an awesome team and I am planning on chatting with all the ladies through many of miles to keep distracted of the pain in our feet. Carly is a HUGE inspiration to get us to the finish line- her weekly pokes with needles to draw blood for lab work and receive her chemotherapy this last year and for the next two years AND all with the biggest smile you have ever seen- is leaving me with the question "what more can I do- this marathon doesn't seem like enough". I now realize that this event is only the beginnig for our family- we are forever dedicated to helping find a cure for NF. Thank you all so much for your donations- you never know which dollar will find the cure.

On another note- never a dull moment at Children's Hospital for Carly. When she was there this last Wednesday getting her chemo- and all went well again as usuall- there was several people from Hyundai with a car covered in children's handprints and news media along with Carly's oncologist doing an interview and receiving a check from Hyundai for $50,000.00 for children's cancer care/research- WOW- Carly was able to put her handprint permanetly on the car and one of the newscasters fell in love with Carly and asked to interview her on air- she was on the 10:00 pm news last night- so cute.

We will be heading to Disneyland this weekend- hope you all have a great weekend.

Chris

Thursday, May 12, 2005 0:31 AM CDT

Hi all-sorry I don't update as much as I probably should. Carly had her 28th weekly chemo (vinblastine) today with no problems. We also saw her Oncologist and discussed again the famous question "how long do we stay on this!!!" I THINK I finally feel confident of the decision to stay on chemo until at least October 2005, but most likely until Octoberish of 2006- sounds like forever- but so did a year from May 17th 2004- Carly's first dose of chemo. Yes, next week is her one year mark on chemo.

As you know the tumors Carly has on her optic nerves will never be gone. Typically when people have tumors and finish chemo they know to stop because the tumors are gone and the chemo worked, you know that it was a success and can move on- we will never have that option. So we play a guessing game and weigh our options of stopping chemo and when they grow again, not if, you begin the process again and hope that her vission is not compromised. The only sure thing to stop her tumors from growing is radiation, and at her age that is not an option. So, basically we are buying time to keep her tumors stable as long as possible so in the event that they do grow again- she will be much older and the effects of radiation will be less noticable- I have been reading of kids in their teens having to discuss radiation for these tumors- it appears that hormones can cause the tumors to begin growing again- and again all casses are different- which also adds to the guessing game.

We will be going to an NF clinic in a few weeks. One thing we have never done is get tested as a family to see if Carly's NF is hereditery or a spontaneous case. There is a blood test that can be done to determine this- and we will be having that done on Rob and I. If one of us test possative, we will check our other three kids at that point. Most people with NF never even know they have it, as it doesn't cause any problems- Carly's case with her tumors are rare.

Thanks for checking in on us.....lots of info.

The McKays

Sunday, May 1, 2005 8:48 AM CDT

Carly has been getting her weekly chemo(vinblastine) on Wednesdays with no major problems. This week will be her 26th injection. Her ANC continues to stay in the 600 range (normal is 1500 at the low end), but she has been going to school as usual. We are going to talk with her Oncologist about going back to Temodar(chemo) now that she is a little older and may be able to swallow the pills. We have found other NF kids having some tumor shrinkage with Temodar.

We will see her Neurologist this week also for her 6 month check up. Still trying to get into an NF clinic in LA- what a process.

Rob and Kyle headed out to Washington DC early this morning for the week with Kyle's 8th grade class-they should have a great time.

The clock is ticking for "Carly's Team" to run the San Diego Marathon on June 5th. Check out our team above, 25 have joined us. Thanks to all of the people who have donated in Carly's honor- we have raised about $2,600.00 so far- and our team is also doing an awesome job raising money for the Childrens Tumor Foundation for NF- I will update our total amount raised soon! If you are interested in joining our team or volunteering along the course with CTF at one of their stations, please email me for more information.

Have a great Day!

Friday, April 15, 2005 8:57 AM CDT

One year ago today we were packed up to go to the desert for the weekend to ride our quads, one last trip of the season.

Carly had an MRI that week and we hadn't gotten the results and weren't even concerned about them- we had no idea they were even looking for brain tumors at that time.

We got a call just as we were leaving, about 4:30p.m. from our doctor. He said her scans showed "optic gliomas, several along her optic nerves on both sides". My response to him was, "okay is that a big deal", I didn't even know what he was talking about. As he went on to explain that these were brain tumors on the optic nerves I couldn't even comprehend what he was saying. I wrote it all down, size, location and our appointment time he had allready made with an oncologist for us- I thought, "wow, what a nice doctor to make the appointmet for us- great customer service".

It was only as the weekend went on that I realized the seriousness of this all, and I didn't want to be out having fun in the desert at that point, I wanted to come home and get on the computer to try and find some answers and some dirrection of what this all meant.

I came home early with Katitlyn and Carly from the desert and we went to the movies that weekend. Carly was sleepy and she fell asleep in my lap at the movies. I can remember so clear the fear of the future for her as she lay asleep in my lap with her head on my chest and praying, "please God, don't let anything happen to her", giving her a kiss on the top of her head and thinking how can something be going on in her sweet little head so scary, she seems so fine.

When we got home from the movies, I put the kids in bed and got on the computer until about 2:00 in the morning. Reading and printing out everything. It was then that I found others all over the United Sates that were going through the same thing we were going to go through- such a comfort to have others to talk to- and now a year later it feels like we actually know these other families and their children. It is like we have joined a club, their joys, triumphs and set backs become your own and you know that this "club" has no end, just a begining. A begining of the fight for these children and their future.

At the start of the treatment at Children's Hospital we would hurry at our appointments. Hurry to get signed in. Hurry to get her tubes put in. Hurry to the waiting area. Hurry when our named was called to see the doctor. Hurry back to our gurney to get her chemo. Hurry and wait for results, answers, miracles. And somewhere along the way this clinic became too familiar and our pace slowed down and we stoped to play and laugh on our way to get tubes, wait for the doctor, have lunch on the gurneys and look forward to seeing these new friends again the next week.

We have seen families come and go at the clinic this last year. The new ones come in and "hurry" by and we know we will meet them soon when their pace also slows down, and then there are the little ones who got their "angel wings" that are no longer with us. This place is surreal.

The McKays
Rob, Chris, Kyle, Kaitlyn, Carter, and Carly

Thursday, April 7, 2005 6:18 PM CDT

Good News! ! !
Carly's MRI showed again stable tumors- no growth. We are very happy and relieved.

A year ago on April 13th 2004 was our first MRI that showed Carly had brain tumors. Her first dose of chemo was May 18th, the day after her Port A Cath was inserted. This last year Carly has had 6 MRI's, 2 Hearing Exam, 3 eye exams, 4 Neurologist exams, 1 Endocrine exam, Foot braces because of nerve damage, hair loss-minimal, 2 units of donated blood, 2 overnight hospital stays, 10 injections of Carboplatin (chemo) 10 injections of Vincristine (chemo) 2 months of Temodar (chemo) and 22 injections of Vinblastine (chemo).

We are now facing our one year anniversary, and the possability of ending treatment for now. We have been told two different opinions of continuing treatment because she is doing so well, or stoping chemo and watching with regular MRI's.

I couldn't wait for this year date, now the thought of stoping treatment seems more scary than staying on treatment.

Thank you for your continued prayer and support for Carly and our family. For now we will continue with chemo and her next MRI will be in July. We will make a determination if the tumors are stable to continue or take a break from chemo.

Thursday, April 7, 2005 6:18 PM CDT

Monday, April 4, 2005 2:58 PM CDT

Carly's MRI went fine. She had her chemo also and lab work done- which showed her ANC(infetion fighting cells) to be low again this week at 660, last week it was 760. We don't think she will be going to school tomorrow. A good range is 1,500 and up and under 500 is stay at home time. Our doctor said she would call us Thursday with the results-will update when we get them.

MAKE A WISH FUNDRAISER......................

Cold Stone Creamery is having their annual fundraiser to benfit Make A Wish.

Carly will be at the Escondido, Cold Stone on Valley Parkway April 25th from 5:00pm to 6:00pm handing out ice cream. Proceeds will go to the local San Diego chapter, which granted her wish this last December to Disneyland.

Hope you will come by and see us!

Wednesday, March 30, 2005 5:28 PM CST

Just got back from Carly's chemo apointment. She was a tropper again today and was excited that she had Rob and I with her today along with her favorite nurse Susan. She also had an appointment with an Ednocrinologist today for the first time. They drew several vials of blood and will check to see if her thyroid/hormone levels are off because of the tumor location. We wont have the results for about 10 days. We are glad to finally get a baseline endocrine evaluation to compare to down the road.

We are getting a little nervous for Carly's next MRI on Tuesday April 5th. Keep Carly in your prayers for no tumor growth. Tuesday will be a long day- with an 8:00am Hystory and Physical appointment followed by chemo/lab work with an MRI under sedation at 11:30am. The MRI usually takes an hour with about an hour in recovery so we will hopefully be home by 3:30pm or 4:00pm.

One thing we just noticed on her last MRI of the brain, that we will question with the doctor this next week, is a pineal cyst of 7mm noted on her MRI that was said to be unchanged since her last MRI- but was never pointed out to us???

Overall, it was a good day with the doctors and we are enjoying the rest of the spring break with the kids this week!

Just got Carly's lab results from earlier today and her ANC(infection fighting cells) is at 760, lowest it has been on Vinblastine. A good range to be in is 1,500 and up- glad there is no pre-school this week!

Saturday, March 19, 2005 10:55 AM CST

Our visit to Carly's NeuroOpthamologist went well. There is only slight vission change and the optic nerve still looks great. We were seeing him every 6 months, but now wants to see her very 3 months. Chemo is scheduled again for this next Wednesday.

Friday, March 18, 2005 3:13 PM CST

Big Mud Puddles and Sunny Yellow Dandelions

Author Unknown

When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard.
My kids see flowers for Mom and blowing white fluff you can wish on.

When I hear music I love, I know I can't carry a tune and don't have much rhythm so I sit self-consciously and listen.
My kids feel the beat and move to it. They sing out the words. If they don't know them, they make up their own.

When I feel wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk.
My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.

When I pray, I say thee and thou and grant me this, give me that.
My kids say, "Hi God! Thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don't want to go to Heaven yet. I would miss my Mommy and Daddy."

When I see a mud puddle I step around it. I see muddy shoes and dirty carpets.

My kids sit in it. They see dams to build, rivers to cross, and worms to play with.

I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!
Enjoy the little things in life, for one day you may look back and realize they were the big things.

I wish you Big Mud Puddles and Sunny Yellow Dandelions!!!

Thursday, March 17, 2005 9:25 AM CST

Carly had her chemo yesterday, her 19th injection of Vinblastine! I can't believe we are allready at 19 doses. We have an appointment with her neuro-opthamologist today to check her vission, she tested at 20/40 a month ago. We are scheduled for chemo again next Wednesday.

Thursday, March 10, 2005 0:31 AM CST

Carly did not get her weekly chemo today. She still has a fever and now ear infection. She had come home Monday with her port a cath still accessed and her tubes in, so no additional pokes for her today when they gave her 3 hours of I.V. fluids- she was a little dehydrated and she received an I.V. antibiotic in addition to her four day plan of antibiotics at home. Her blood counts remained good so they sent Carly home to recover!

We are scheduled for her weekly chemo next Wednesday if all goes well and no more fever.

We will shop this weekend for an adorable dress for Carly to wear in her Aunt Mandy's wedding in October as the flower girl. Mindy (matron of honor) me (bridesmaid) Kaitlyn (jr bridesmaid) will also be searching for dresses along with Mandy. This will be a fun wedding with Rob (groomsmen) Kyle (jr groomsmen) and Carter (usher) in the wedding along with cousin Jake (ring bearer).

Have a great weekend!

Wednesday, March 2, 2005 6:40 PM CST

Carly has come down with a cold over the weekend with a fever. I had to take her into Children's Hospital yesterday (Monday) so they could draw blood and do a culture- there is a risk of infection to her port a cath when they have fevers over 101 degrees. She woke up at 3:00 am this last night having a hard time breathing and a fever of 102 degrees, so I may be off to Children's again with her today- her blood counts were high enough that they sent her home yesterday while we wait for the blood work to come back, otherwise they would have admitted her. They accessed her port, so she came home with her tubes still in place with the plan that her chemo will still be on Wednesday, but with the fever still going on and now the congestion and cough, I may just have to go in to get her tubes out today or tomorrow.

Thursday, February 10, 2005 9:06 AM CST

Carly had her chemo visit and saw her oncologist yesterday. She is doing good on her chemo, her blood counts have remained in a good range and she is off to school two days a week. She will be seeing an Endocrinologist soon.

If you are interested in joining Carly's team, sign up under rnrmarathon.com and ctf.org to fundraise, email your address also for more information. This is going to be a good time-hope you can make it!

Wednesday, January 12, 2005 6:09 PM CST

We just got back from Carly's doctor visit with the MRI results and the tumors are again stable- which is great news. Carly started chemo this last May and we were told she would have a year of treatment. We assumed that her chemo would be done around May of this year. Now the doctors are saying that they would like to see her continue this current chemo for two more years, as long as she tolerated it, to prolong any future radiation- it feels like this will never end.

On a better note.........Carly starts pre-school finally tomorrow and is so excited! She was supposed to start in September, but we kept her out until we saw how she would handle the chemo. She is very excited about packing a "lunch" and has told me a million times what to pack and that she would have her teacher help her open her lunch box if she couldn't do it. I will let you know how she does tomorrow and any tears that are shed- by me I am sure.

Wednesday, January 5, 2005 2:38 PM CST

Sorry I have not updated in so long. This holiday season has been wonderfully hectic. First we started off with Carly's Make-A-Wish trip to Disneyland to ride the Pooh ride with Pooh, however he couldn't fit on the ride-so Carly just played with him for a bit. I will get pictures on this site for you to see. I think she liked the character meals the best and her favorite ride was Splash Mountain, she is a thrill seaker!
We then came home for Christmas with Mandy, Dave and his family and Cam, Mindy and boys. We had a fun visit. Then we headed off the Big Bear for New Years Eve. Carly loved sledding, snow ball fights and Coke snow cones- Now back to our routine. Rob took Carly to her 10th chemo apointment on Tuesday, her ANC is low, but otherwise she is doing great. She has another MRI, can't believe it is time, on Jan. 10th. Please pray again for continued stabalization or shrinkage. I have yet to get my Christmas cards out, so they are now New Years cards and hope to update you all with pictures and updates. Thank you for all of your support this last year and we are looking forward to continued healing and off of chemo for Carly in 2005!

Wednesday, December 15, 2004 11:13 AM CST

Carly had her chemo yesterday, 8th injection and doing great. Just low blood counts, but nothing that keeps her from her normal self. We are excited because she gets next week off from chemo to enjoy her week from Make A Wish. She had a fun day at Children's Hosptial yesterday getting her chemo. What seemed like the entire San Diego Police force, was there handing out teddy bears to the kids. The officers pulled up to the bulding with lights flashing and their cars stuffed with bears hanging out their windows-about 20 cars, 10 motorcycles-the kids loved it. I will hopefully get some photos of Disneyland on the website when we are back!

Wednesday, December 1, 2004 10:29 AM CST

Carly has now had seven straight weeks of chemo. Her side effects are thinning hair, tingling feet and a low hemoglobin of 7.9 making her look very pale, they start suggesting transfussions at 7.5.

The kids are getting excited about Christmas and especially Carly's Make a Wish in a couple weeks to Disneyland.

Tuesday, November 23, 2004 10:10 PM CST

Carly did great again getting her chemo. This is now her 5th dose of Vinblastine and she is more energetic than ever. The kids have been having a great time on Thanksgiving break. Since our weekend of theme parks, Carly has been bowling today after a morning of chemo- can you believe it. Rob took the boys to see a movie this evening afer bowling, Carly wanted to go do that also, but we opted to stay home and watch movies instead. She will get to go to the movies tomorrow to see "Christmas with the Kranks". We are expecting company for Thanksgiving and will be going to the zoo later this week.

We hope everyone has a wonderful Thanksgiving. We have so much to be Thankful for this year. Thank you so much for your prayers and support.

Friday, November 19, 2004 11:01 PM CST

Praise-
Carly has had two MRI's since her treatment has started and the tumors are stable! Please continue to pray for stabalization over this next year of treatments.

Carly has now completed 4 weeks of weekly chemo injections with the only side effects being low blood counts. Her ANC(infection fighting antibodies) is now at 1080, when it reaches 500 or less she has no immunity and chemo will be stopped until it builds back up again.

We are taking advantage of Carly feeling well and will be headed to Magic Mountain and Unniversal Studios with all of the kids tomorrow- they are very excited.

Monday, November 8, 2004 10:23 PM CST

Carly has now had two rounds of Vinblastine. She will go tomorrow, Tuesday, for her third dose. She has started getting mouth sores, a side effect of chemo, but they are getting a little better. She has had a cold/cough/fever the past few days, but is still her spunky self.

Tuesday, October 26, 2004 4:02 PM CDT

Carly just received her first dose of Vinblastine. She hasn't had any problems with this. We gave her medication for nausea and that should do the trick. Her favorite nurse, Susan, was there today and was very good to Carly.

The nurses were laughing at Carly today. The tv/nurses remote on her bed is what she can hear the TV mounted on the wall through. Carly was watching Dora and if you know this show it asks the kids questions and the kids yell the anwsers back at the TV. Not Carly, she would push the button to call the nurses and say the answer. I guess since she could hear the TV through it, she thought it was a walkie talkie and her answeres were going straight to Dora instead of the nurses station!!!!!!!!!

Thursday, October 21, 2004 4:59 PM CDT

Carly's MRI showed the tumors as "no change-stable". We are changing her chemo plan. She will now do Vinblastine, that is given weekly through her port-a-cath at Children's in San Diego. We are stoping the Temodar because of the high risk of secondary malignant cancers it can cause in the future, and the pill form was not working for a 4 year old. The side effects of Vinblastine are more short term and are, nerve damage again like the first chemo-but we will watch for that, hair loss, nausea, low blood counts that could lead to blood transfussions again( like her previous two). Thank you all for your prayers and concerns. Please pray that Carly wil be able to continue on this next chemo with no allergic reactions- we need a year of stable tumors to get her off the chemo.

Monday, October 18, 2004 6:38 PM CDT

Carly did great getting her MRI today. She started out with getting her port-a-cath accessed and had blood work done and a doctor check up. We have an appointment on Thursday to get the MRI results and discuss our next chemo treatment. Thank you for all your prayers, especially to all the MOPS Moms who have prayed arround the clock since yesterday for Carly- you're awesome!

Tuesday, October 12, 2004 2:46 PM CDT

Carly is doing great. She loves wearing her leg braces, and she is getting stronger all the time. Her blood counts are good, but she hasn't gotten the full doses of chemo down. We are still scheduled for her MRI on the 18th, please pray for stabalization of Carly's tumors.

We are set for Carly's Make a Wish trip on December 18th through December 23rd for Disneyland. Carly is very excited and asks daily if she will still get to ride the Pooh ride with Pooh.

Thank you all for your love, support and prayers.

Monday, October 4, 2004 5:24 PM CDT

We just got back from Carly's doctor visit and lab results are pretty good. Her ANC is 1300, half of what it was last week so she got enough chemo in her to do something. We will be making a choice of staying on her current chemo that will have to be given a little differently until she can swallow pills- with an NG tube (it is a tube that goes down her nose and into her stomach. This tube would be inserted on Monday and left in until the end of her five day treatment on Friday. I would be mixing and injecting the chemo through her tube once a day for five days. Our doctor said this tube usually doesn't work for her age because the kids pull it out really easy- so we will see. Our other choice is another IV chemo called Vinblastine that is given through her port-a-cath IV once a week at childrens every week for at least a year. Both chemos have side effects to consider- the Temodar (that we are on now) has a side effect of secondary cancers latter in life- and the Vinblastine causes low blood counts and weakness similiar but not as severe as the Vincristine that she was on and had to stop because of nerve damage. Overall, Carly is doing great and we are eager for her next MRI on October 18th.

Friday, October 1, 2004 10:56 PM CDT

We just finished Carly's five day chemo. She only threw up the first day, but complained of stomach aches throughout the week. She is more tired than usual and cranky. She didn't get all of the doses down each day, so we will see what her doctor says on Monday about this plan. Carly's leg/foot braces will be done on Wednesday and we picked out some tenny's that should fit with the inserts inside. We see the Oncologist to discuss Carly's plan again and check her blood counts. We will keep busy this weekend with soccer games for Kaitlyn and Carter along with soccer pizza parties. Rob and the boys are excited to be going to the Chargers vs Titans game on Sunday. That leaves us girls with the mall and movies! Have a great weekend!

Tuesday, September 28, 2004 8:56 AM CDT

Carly started day one yesterday of chemo. We were only able to get half of her dose down her, and she threw it up two hours later. Hopefully today will be more successful-her incentive (bribe) today is to get her chemo taken before we go to Starbucks today and see some of her new friends from MOPS (mothers of pre-school chrildren.

Friday, September 24, 2004 9:01 PM CDT

Carly just had some fun news given to her! She just had a visit from Make A Wish volunteers to see what she would like. When they asked her what she wanted she said, "I want to ride the Winnie the Pooh ride with Pooh at Disneyland". Make a Wish is unbelievable, they are so generous and caring about the entire family. They brought something for all the kids and made sure they felt involved in the wish also. They are sending us to Disneyland for 5 nights! They will contact us in a couple weeks with an exact date and schedule, but the said it would consist of Disneyland, California Adventure, Knotts Berry Farm, a museum in the area and probably a Mideaval Times show. All of the kids are so excited, we are also!

Monday or Tuesday Carly will start her 2nd round of chemo- wish us luck on getting all of her doses down her before Noon time. Also, her next MRI is October 18th, please keep Carly in your prayers, last MRI showed no change- we are praying for some shrinkage.

Wednesday, September 15, 2004 3:29 PM CDT

Carly is doing great on her new chemo plan. She had blood work done this week and it looks good, so she can skip next weeks blood draw. We will start her second round of chemo in two weeks.

She had a hearing test that came back normal, which is great because her first chemo she was on for three months can cause hearing loss. Next week Carly will get fitted for AFO's (inserts that fit into her shoe and attatch to a brace up her leg and end just below her knee). The AFO's will help her build the strength back in her legs/feet that the first chemo damaged.

Thank you for your prayers, The McKay's

Thursday, September 2, 2004 9:54 AM CDT

Carly started her new chemo plan of Temodar on Monday. It is in capsule form (4 of them a day) to be given for five days in a row. Then 3 weeks of weekly lab and doctor check ups- and repeat the process for 1 to 2 years if Carly does well with this. The tricky part is breaking open the capsules and hiding it in drinks, when she taste the chemo she throws it back up- and we have to do it again. I am not sure if this plan will work because I have only been successful one of the four days to get all 160 mg down her in a day. We will have another MRI 3 months from this new chemo start date.
Carly received a letter from "Make a Wish" today. They will be asking her in the next couple of weeks what she would like to do or see, and will be granting her wish in the next six months. We will let you know what she chooses.
It is almost back to school time for Kyle, Kaitlyn and Carter. Carly will miss them during the day. Kyle is busy getting ready for the 8th grade and football for his JR High- he will be their quarterback this year. Kaitlyn and Carter just kicked off their soccer season with Rob as their coach! Thank you for checking in on Carly's site- please keep her in your prayers.

Wednesday, August 18, 2004 8:55 AM CDT

Carly attempted to receive her chemo on Monday but had a severe allergic reaction which resulted in an overnight stay at the hospital. We had just started her chemo and about ten minutes into the infussion she began to swell in her face hands and feet. She started getting hives which turned into blotches and then she was compleley red from head to toe. Before I knew it Carly had a team of nurses and doctors working on her to control the "anaphylactic shock" (causes the airway to shut)she was now having. Each patient has an emergency kit next to them and they quickly ripped into that and began giving her epinephrine along with a couple other drugs to counteract the chemo. Along with the four nurses and two doctors now working over Carly a team from the ICU with their "crash cart" and social workers for Kaitlyn and I show up. After 5 to 10 minutes the drugs began to work and she started returning to her normal color with no swelling. They admitted Carly for the night and gave her medication through the night with oxygen.

She bounced back to her normal self after a few hours and was excited to stay in her hospital room with Rob for the night. She liked when her dinner tray was delivered to her and asked if she could have "sprinkled donuts" for breakfast- of course she got them! She was getting whatever she wanted at that point. She is such a brave little girl. She did start giving the doctors a bad time that evening by faking like she was asleep when they came in and removing her oxygen mask then covering her head with her blanket and hiding from them.

We are faced with a new plan now for treatment. She can no longer continue with the current chemo. In a couple weeks she will begin a different chemo with a plan of 1 to 2 years if she can tolerate it.

Please keep Carly in your prayers, that she will be able to tolerate her medication and keep the tumors stable.

Wednesday, August 11, 2004 6:17 PM CDT

Carly ended up having two weeks off from chemo. The doctor wanted her to have a break and build up some strength with her walking and neurological difficulties she was having. She started back again this week, Monday the 9th. Rob and Kaitlyn took her to her appointment and she enjoyed the day with them watching movies and playing cards (poker). She had an allergic reaction to the chemo again, but was able to get it under control. She will return again next Monday. Her plan will be 4 weeks on and two weeks off of chemo as along as she tolerates it well.

Sunday, August 1, 2004 7:43 PM CDT

Carly had her MRI last Tuesday and the results showed no change in the tumor size. We were dissapointed that they did not shrink, but glad they did not grow. Her blood work last week on the MRI date showed a low hemoglobin again, but we opted not for a transfussion and she has been doing fine. She is having neurological problems, falling, fine motor problems with her hands that we will discuss with the doctor. Her new chemo days will be Mondays and if her blood counts are good she will begin chemo again tomorrow after having only one week off. Carly got her hair cut short and she loves it, she looks adorable, I will try to get a picture on the website. Thanks for all of your prayers. The McKays

Tuesday, July 13, 2004 10:15 PM CDT

Carly received her 9th chemo treatment today with no problems. She has one more treatment next week before they do an MRI on July 27th to check for progress on her tumors. Please keep Carly in your prayers that the MRI will show great results. Thanks!

Wednesday, July 7, 2004 12:37 AM CDT

Carly received her 8th chemo yesterday and also had to have another blood transfussion for a low hemoglobin, 7.7. It was a long day, our appointment was at 11:00 am and we finally got home at 8:00 pm- but she was a little trooper. Kaitlyn was with us for the day and helped pass the time with movies and games to play. She is sick to her stomach, throwing up and very tired today. So we will be taking it easy for the next couple of days.

Friday, July 2, 2004 9:55 AM CDT

Carly received her 7th chemo this last Tuesday without any problems. She was excited because her brother, Carter, joined us for the day. He helped pass the time with us watching movies, trips to the vending machine and lunch at McDonald's. Her blood counts are on the way up again, and we are looking forward to having friends over to celebrate the 4th of July with us. We are scheduled again for next Tuesday, the 6th of July.

Wednesday, June 23, 2004 10:58 AM CDT

Carly received her 6th chemo infussion yesterday. She had a low hemoglobin and had to get a blood transfussion. Having a low hemoglobin causes you to be pale in color and to not have alot of energy. When we arrived at the hospital she was very tired and slept through the entire 3 hour blood transfussion. By the time she was finished with the blood transfussion, it had done wonders for her. She had color back in her face, was playing, coloring and throwing things at us for us to pick up off the floor.(a fun past time of hers while she sits in her hosptial bed). She even perked up to color a picture before she left for her favorite nurse while we were there, she usually cranks out about 5 of them at a time for Nurse Susan, who hangs them on her fridge at home. Now the only bad part of her feeling great is she can't go anywhere. Her ANC (which determines her risk of infection from germs) is 419.A normal ANC is anywhere from 1,500 to 5,500. Anything under 500 keeps her from being in public places, or having visitors to our house. A simple cold while her ANC is low could put her in the hospital. So we are being very careful until next Tuesdays blood work when she will hopefully have a higher ANC. At this time she is scheduled for chemo again next Tuesday.

Wednesday, June 16, 2004 11:54 AM CDT

Carly had her 4th chemo last week and now received her 5th dose yesterday, the 15th. Her lab work showed that her hemoglobin was low and we anticipate that she will be getting blood for this possibly Thursday or Friday. The plan is for her to get her blood checked tomorrow and if it is in the range of 7.5, she was 8.9, we will need to take her to Childrens to get blood. We have been told that the process is over a 4 hour time span when she receives the transfussion. She has not been as active and is pale most of the time. If her blood work comes back fine, her next appointment will be this next Tuesday again for her chemo.

Thursday, June 3, 2004 10:15 AM CDT

Carly did great getting her 3rd chemo this last Tuesday. Because she had a couple of nosebleeds, they were not sure if she would be able to get her chemo, or need platelets, but she was fine and able to stay on schedule. We are starting to see familiar faces of other patients and nurses that Carly remembers from each visit, and they remember her. Thank you for your continued prayer. Her next scheduled chemo will be Tuesday June 8th. Carly's blood type is 0-, and we will be contacting the San Diego Blood Bank for instructions for those who wish to donate blood in Carly's name, incase the need arises. Please email us dirrectly if you would like more information on the San Diego Blood Bank.

Monday, May 31, 2004 6:11 PM CDT

Carly is scheduled to get her third chemo treatment tomorrow. She has had a couple of nosebleeds, but otherwise is great. Her visit tomorrow will begin with her porta-cath bieng accessed and administering fluids before her chemo. She will have her blood drawn to see if her counts are where they should be to get her chemo. After we have seen her doctor and the blood work is checked out, the pharmacists get her chemo ready. She receives two types of chemo- one is a slow drip over an hour, and the other is shot into her port in a matter of seconds. This entire process took us five hours last week. Even though Carly is attatched to an I.V. poll (that is on wheels) from start to finish, it doesn't keep her from going to the playroom, getting snacks from the vending machine (a fun pastime) or playing with the many volunteers. She is all smiles- but reminds the nurses who see her to "be careful" as they get close to her port-a-cath. She is so funny!

Friday, May 21, 2004 11:52 PM CDT

Good News! Carly's MRI results were great. We were told by her neurologist that they "expected to see tumors all along the nerves of the spine", and there was nothing! We are so relieved to know that as of now she is only having to fight the brain tumors.

She has had a few aches and stifness from the chemo, and is more tired than usual during the day. Otherwise, she is her normal playfull self.

Wednesday, May 19, 2004 8:39 AM CDT

Hi everyone. Carly's surgery for her port-a-cath went great. We wont get the results of the MRI yet until the end of the week. She had her first dose of chemo on Tuesday and hasn't had any side effects. We came home with her Tuesday evening and her sister and brothers gave her a big welcome home.

All of the doctors and nurses that came in contact with Carly could not believe what a happy and easy going patient she was.

Thank you for your prayers and support. Carly is doing awesome! Our next chemo is scheduled for Tuesday the 25th.

Sunday, May 16, 2004

Carly is packed and ready to go to the hospital. She is excited to play in the inpatient play room because they have a very fun kitchen she enjoys with alot of toys.

Our oncologist gave us the plan for Carly. She will have an initial induction (ramping up) period of 9 straight weeks of two chemos, with the intent of stoping any new cell growth. She will then have 3 weeks without drugs, but we will still have to report to the hospital each week for blood testing. On the 12th week she will receive her next MRI, where they hope to see the tumor exactly as it is now, and a bonus if it has shrunk (God is faithful, we are praying they shrink).

On week 13, she will start a series of 8 5-week cycles of "maintenance" chemotherapy. The maintenance involves three weeks of both chemos, the 4th week with just one chemo, the 5th week with no drugs, but still report to the hospital for testing. After week 5, she starts Cycle 2, and repeats the same process. We will be at Children's Hospital once a week for 52 straight weeks. She will receive a total of 75 chemo injections during that 1 year span.

In addition to the Chemo, she will receive two other drugs as well. One is for nausea and the other is an antibiotic that she will get three times a week, as she will have basically no imunity. Additional drugs will be introduced as needed depending on her reaction to the chemo. She may or may not lose her hair, become sick, have nervous twitches, etc. during the year's time, but all of those conditions are not permanent. Loss of hearing and the possibility of obtaining Leukemia or other cancers is the greatest risk during this next year.

We expect to be back from the hospital late Tuesday night or Wednesday. We will keep you posted. Again, thank you so much for your prayers!!!!

Tuesday, May 11, 2004 0:21 AM CDT

Carly will be admitted to San Diego Children's Hospital on Monday May 17th to have a Port-A-Cath inserted in her chest, this will allow easy access for chemo, blood tests, and IV's. She is scheduled for a 4pm surgery with an MRI of her brain and spine to follow at 5pm (while she is still asleep). They are doing the MRI to get an exact size of the gliomas and of the spine to look for neurofibromas (benign tumors) as they expect to find them because of her NF. She will get to her room late that evening, Chris will stay the night with her in her room, and Rob will be nearby at Mandy and Daves place. If all goes well, she will begin her first dose of chemotherapy on Tuesday May 18th. We are not sure how many nights she will be staying at Children's Hospital, we were told to plan for at least two. Grandma and Grandpa Blaylock (Chris's parents) will be staying at the house with Kyle, Kaitlyn and Carter during this time.

Tuesday, May 11, 2004 0:04 AM CDT

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