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Sunday, December 18, 2011

6 Month Check-up

Today we head back to St. Jude for Courtney's 6 month check-up.  She will have a full body check at the dermatologist on Monday, blood work, brain MRI & chest x-ray on Tuesday, and a PET scan of her body on Wednesday.  I have been so scared for this week to come.  I am sure she will get great results, but I still get so nervous .... especially these last few week.  After this check-up we can breathe easy for the next 6 months. Please pray for her.  Thank you so much!!

UPDATE:  We returned from the hospital yesterday and ALL of Courtney's scans are CLEAR!!  While we were waiting for the results Courtney was very scared and was crying a lot.  I felt very positive that everything was going to be okay, and I told how I felt.... which made her feel much better.  A few mintues later we received our results, and we cried happy tears.  We were so relieved.  Praise God!!

We will continue our monthly trips down to Memphis, but do not need any scans for another 6 months.  I tried to make a vow to myself that I will worry less and do less research, but I came home last night and got right on the computer.  Ughhh!  It will take more time I guess.  :)

Wednesday, November 23, 2011

November 22, 2011 St. Jude Visit

Courtney had another wonderful check-up.  All of her numbers look good.  We return December 20 & 21st for a MRI of her brain, PET scan of her body, chest xray and dermo full body appt. 

On Sunday I could not get Courtney's temperature above 95.6 and I was getting worried.  I did ask the dr about this, and it is fine as long as it only happened one time. 

She is feeling great.  The side effects are mild and she continues to be positive and is living her life to the very fullest.  She is an amazing young lady!! <3

Friday, November 4, 2011

October 2011 St. Jude Visit

Courtney had a good check-up at St. Jude in October.  Her liver numbers are still a little high, but they are continuing her treatment.  They thought they felt a lump in her neck, and we were worried, but it all turned out good!  She goes back the week of Thanksgiving, and she will have a PET Scan, MRI of her brain and chest xray December 20, 2011.   I worry about the scans and what they might find, but I try to push those thoughts out of my mind and I go back to feeling positive.

Make-a-Wish came to our home on Wednesday and asked Courtney what her wish is.... she chose Maui, Hawaii.  We are both very excited as we have never been anywhere tropical.  We hope and pray that her wish will be approved.  It really gives her something to look forward to. 

Thursday, October 6, 2011

Picture of Courtney's Melanoma

This is a photo of Courtney's melanoma the day she had it removed.  It started as a regular size brown mole and it grew within months and started itching and bleeding.
Stage II C Malignant Melanoma; Breslow 7mm, Clark level IV, mitotic rate 20, invasive, ulcerated 


Wednesday, September 28, 2011

September 27, 2011 St. Jude Visit

Courtney had her monthly check at St. Jude yesterday.  I went in with a postive feeling, but the blood work showed that she is having liver problems.  Her AST (SGOT) was 142 and it should be 5-40.  The ALT (SGPT) was 218 and it should be under 58.  They temporarily stopped her treatment until her liver enzymes go back down.  All other numbers look great.  Monday I need to take her to get her blood tested, and St. Jude will over night her peginterferon if her numbers are low enough.  Courtney is not too worried about it.  She is happy that she gets to skip a shot this week.  I, on the other hand, am worried that the cancer will be come back during the time there is no interferon in her system.  She missed 1 week of the high dose treatment due to her liver also.  Other than that, we had a really fun trip, as always.  We laugh so hard at times.   I have been doing much better with the worrying for the last week or so.  I have decided to put the computer aside and quit doing research on melanoma since I cannot find very many positive things.  I feel so much better too.

There are 2 more girls about Courtney's age at St. Jude.  We met one yesterday.  She is an 18 year old who has had melanoma for about 10 months now.  She had a Stage 2, like Courtney.  She went through the high dose and was taking the peg interferon, and had to stop at 23 weeks, I believe, because they found a lump on her neck.  They did surgery to remove 2 lymphnodes and they tested positive for melanoma.  She is currently doing 5 radiation treatments.  So, in 10 short months, she went from a Stage II to a Stage III while on treatment.  This is so frightening.  There is also another 16 year old, but we have not met her yet.

We return to the hospital on October 25, 2011.  She is almost due for her PET scan and that will tell if the cancer has spread to any of her organs.  I asked the doctor to see if they can tell if the cancer is spreading by her bloodwork.  He said no, but her LDH may rise a little bit if it was.  It is all we can do .... is watch and wait, and hope and pray.

UPDATE:  October 4, 2011
Courtney had her blood drawn yesterday to check her liver, and St. Jude just called to tell us that her counts are back to normal, and she can resume treatment tomorrow.  Thank the Lord!!

Wednesday, August 31, 2011

August 29 & 30, 2011 - Monthly St. Jude Check-up

Courtney had a wonderful monthly check-up yesterday.  The melanoma has not spread, and her blood work looked good.  They said her liver enzymes were a bit high, but that was from her peginterferon and it was not anything to worry about.  She continues to have some achiness, fatigue, and some memory problems.  Besides that, she is enjoying her life...doing lots of things with her friends and boyfriend.  We are also waiting patiently for Make-a-Wish to come visit.  She has been approved, but now it takes 4-8 weeks for MAW to visit the house.  She wants to take a Mediterranean Cruise.  MAW told me to look up our favorite cruises and countries that we would like to go.  Next St. Jude appt is in 4 more weeks. 

Saturday, August 20, 2011

Peginterferon shots

Courtney has had 6 shots of Peginterferon alpha 2b so far, and is really doing well.  She does get a few side effects with this shot, but they are not as bad as the high dose interferon.  I have read several reports and articles saying that peginterferon takes away your quality of life for the year that we have to take it, but I have to say that it is not effecting Courtney negatively at all.  She does get some achiness, nausea, and maybe a slight memory loss at times... but she leads a regular life and is very happy, upbeat, and extremely positive about kicking this cancer. 

Courtney was approved for Make-a-Wish, and we are waiting on a local representative to contact us.  She is leaning towards a Mediterranean cruise ... Spain, Italy, France.

We go back to St. Jude August 29th for her monthly check-up.  She will go once a month for the next year, then 3 times a month for two years, etc... it is a 10 year protocol.  

Wednesday, July 6, 2011

Interferon & Peginterferon Treatment

Courtney started her interferon treatment 3 weeks ago, and did have a few problems.  First, she was sick after every treatment and on the 2nd week she began having problems with her liver so they had to stop treatment for a week.  Yesterday they told us that her liver was back to normal and they resumed treatment today using 25% less.  So far she seems to be feeling good.  She has to take nausea meds around the clock and advil every 6 hours.  We will be leaving St. Jude next week... hopefully Wednesday.  We are both so happy to get back home.  I am glad that she will have a couple weeks of summer vacation left before she starts back to school on Aug 1st.  She will start the 2nd phase of her treatment on Monday... peginterferon.  She will receive 1 shot a week for 48 weeks.  We will come back to St. Jude once a month for a year, and then every 3 months for 2 years... every 6 months for 3 years... once a year for 5 years. 

Thursday, June 16, 2011

Ronald McDonald House

Today Courtney and I moved into the Ronald McDonald House in Memphis.  This place is wonderful.  I have been feeling a bit depressed lately, and my mood has changed so much already after meeting some super nice people... talking ... laughing.   I got Courtney up to go down and eat and she felt better after for a little while.  Right now she is not feeling very well again.  She gets achy all over and has a temperature.  So far these are the only side effects she is having.  She will have treatment through Sunday.

Courtney at Ronald McDonald House in Memphis, TN

Wednesday, June 15, 2011

Treatment starts...

Yesterday we received the best news... the cancer did not spread to her lymph nodes!  I was terrified that it was because they had to do additional blood smears... like they did for her melanoma, and that came back positive.  I am thanking the Lord!!  Before we spoke to her doctor, I was holding back tears all day and was very emotional.  I felt like there were a ton of bricks in my stomach.  When they put her to sleep to put her PICC line in, the tears started coming as it is very emotional watching them put your child to sleep.  They put me in a hospital room and I cried for about 20 minutes.  The nurse that was putting the line in came in and held me and prayed with me.  She told me she prays over every patient before they insert the line.  I have not had a real good cry since I have been here because Courtney has always been at my side, and I try not to cry in front of her because I do not want to scare her.  Afterward, I felt good, like all the weight was gone... and my positive feelings came back... She woke up... I wheeled her to the doctor, and that is where we received the good news... yes, more tears!  but tears of joy!!!  I prayed to God and thanked him for this wonderful news all throughout the rest of the day and night.  Now we have to KEEP the cancer from spreading for the rest of her life.  I am not going to think about the statistics of a stage IIC cancer (which they say the 5 year survival rate is 47%).  At first it made me sick, but now I am going to think that she IS going to be the 47% that survives.  She is young and so healthy... and very strong!!  

Today Courtney starts her treatment of the peg-interferon alpha 2b.  This drug is new and Courtney is part of a research study using this drug.  They have not tried this drug on children and approximately 15 other kids from St. Jude and MD Cancer hospital will be on this protocol.

Today will be a long day.  We go to the nurse so they can teach me how to care for her PICC line, and then treatment is from 11:30 am to 7:30 pm.  We have to be there so long so they can take a lot of blood samples.

This is our last day at Grizzy House... we move to Ronald McDonald House tomorrow.  Courtney was concerned that they didn't have maid service at RMH like they do here.  LOL

Thank you dear Lord for hearing and answering our prayers!  Now we will need prayers to get her through these next 4 weeks as there are a lot of side effects.  The nurse said that she may have all the side effect, none of them, or people even make up their own.... Courtney found this funny, and thinks she is going to come out of  this talking Chinese!!  Please nooooooo... I can barely understand her now as she talks too fast... and non-stop!  Ahhhhh.... I love my daughter more than anything... she always makes me smile and laugh so hard, even through all of this.  <3

8:30 pm
Courtney completed her first treatment.  She was doing well at first, and then started to feel achy about 6 hours after... She is resting.  It was a long day.

Tuesday, June 14, 2011

Treatment

Yesterday we received the results of Courtney's surgery.  As of right now she has a Stage IIC cancer, although the results of the lymph nodes are not back.  I am still praying that this will come back as negative today.  The doctors told us that she has a very high risk melanoma, it is dividing quickly, and it has ulceration. The depth of the melanoma tumor was 7 mm, which is very deep, and the likelihood that it will spread is high.  She will receive the new drug, peg-interferon alpha 2-b.  She will get her line put in today, and she will start her treatment tomorrow.  The first part of her treatment is called induction, and will last for 4 weeks.  She will receive a high dose of interferon alpha 2-b (Intron A) 5 days per week for 4 weeks.  She will also receive something before her treatment to help prevent possible side effects.  The 2nd part of her treatment is called maintenance, which will last 48 weeks.  She will receive Peg-Intron once a week.  Peg-interferon has been used mainly in adults with Hepatitis C.  Peg-interferon has been shown to work just as well or better than interferon.  There are a lot of side effect that i will not get into, but I feel that she will do very well on this as she is otherwise very healthy, young, and very strong.  We have a lot of people praying for my sweet girl, and all I do lately is pray.  I do believe our prayers will be answered, and she will be the percentage that survives this awful diseases.  I was telling a friend this morning that she is going to kick the cancer's ass and then I went on Facebook, and Choose Hope.com has a new shirt that says Kick'n Cancer - one day at a time.  This is Courtney's motto... One-Day-At-A-Time!!  I am learning from her.... I love my daughter so much!!  She has so much life, love, she is so smart, and sooooo funny.  She makes me laugh every day.  I know it may sound corny, but she really is the light of my life as she is such a "sunny" happy person.  <3

Saturday, June 11, 2011

Surgery

Courtney had her surgery on Monday, June 6,2011.  Everything went really well.  They did not do a skin graph like they said they would do and just stitched her up, which is good.  Yesterday she had her drain removed and they removed the bandages and it really does look good for the amount of skin they removed.  We were supposed to receive our test results on the lymph nodes, but they will not be in until Monday.  The surgeon did say that her lymph nodes look clear, but we still need to wait for the results as they are doing a more thorough test.  We are so very happy about this.  I was very scared, but I prayed every moment that I got.  So we will know for certain about the lymph nodes on Monday, her stage of cancer, and her treatment plan.  She is really doing great!!  I missed her sunny personality while she was on the morphine, but she is definitely back to her happy self. 

Wednesday, June 8, 2011

Melanoma Awareness

Please read Ryan Ritchie's Story:   http://www.melanomaawareness.com/

Melanoma Awareness for Teens and Kids/ Beware of Tanning Beds/Salons

Even after my daughter was diagnosed with Malignant Melanoma, her friends are continuing to go to the tanning beds and laying out in the sun without sunscreen.  Teenagers are NOT aware of how deadly melanoma can be, or they just think it will not happen to them.  I, as an adult, was not aware of melanoma and I thought it would not happen to us.  I mistakingly allowed my daughter to go to a tanning booth for 3 one month sessions over the last 2 years, which is not much at all considering how much other teens and kids are going.   I do believe now that there should be a law banning anyone from under 18 years of age from going to tanning salons, as there is just not enough awareness on melanoma out there.  I had NO IDEA that melanoma could spread as fast as it does and go into the organs and can be deadly.  This is absolutely terrifying!!  I thought skin cancer was topical only and was cut out and that was the end of it.... of course I never thought we would even get that.  Melanoma awareness needs to be brought to our middle and high schools as melanoma is on the rise for teens and they also need to know that they can DIE from going to the tanning bed.

Thursday, June 2, 2011

Make-A-Wish Foundation

Our social worker at St. Jude told Courtney that she will get a wish from Make-A-Wish Foundation.  This surprised us as I always thought it was for terminally ill kids.  It is for kids with life threatening illnesses, and so many of these children go on and get completely better.  Make a wish is amazing that they help children going through very difficult times to think about something positive.  She is thinking about an international trip or a college scholarship of some kind.  She does get all A's and B's.  I know I will never be able to afford to send her to Australia or Germany, so this is what she is thinking about.  I asked her if I could give her one wish (before we knew about Make a Wish, and she said she wanted me to take her to Disney World.  So I will save all the money I can, and take her and the kids as soon as it is possible. 

St. Jude

We finally got the call from St. Jude and we arrived on Monday, May 23, 2011.  We have had a lot of appointments and they did additional PET scans, an MRI of the brain, and a CAT Scan.  We found out yesterday that the cancer has not spread to her other internal organs, and we were SO HAPPY!!  Yesterday we had an outside appointment to see a plastic surgeon.  They are doing surgery to remove the rest of the tumor on her arm, and will need to take out a lot of the surrounding skin, so she will get a skin graft from her hip.  We are just now waiting for all the doctors to get together and set a date for her surgery as I want to get this cancer out of her body.  Before her surgery, they will shoot dye into her lymph nodes and see if the cancer has spread there.  We will know what stage cancer she has once the surgery is over.  We can check off Stage 4 cancer as it is not in her organs.  Now we need to check off Stage 3 as I feel positive it is not in her lymph nodes.  I will continue to pray.   

Sunday, May 22, 2011

Waiting for St. Jude...

I thought there may have been a chance that the hospital would call us this weekend to finish registering Courtney, but they did not.  I am sure they will contact us tomorrow so we can get her out to Memphis ASAP to get this cancer removed completely.   I need to be more patient...

The beginning...


My daughter, Courtney, was diagnosed with Melanoma Skin Cancer Stage IIC (2C) on May 12, 2011.  It started as a regular mole that she had from the time she was a little girl.  It started growing, bleeding, and it itched.  The tumor was 7 mm deep, ulcerated, invasive, and a high mitotic rate of 9.  The prognosis or 5 year survival rate is 47% for a tumor 4mm or larger, and 30% with a tumor 6 mm or larger, ulcerated and high mitotic rate.

This blog is to help others to be more aware of melanoma as I was not.  I did not even know what it was, how it looks, and how deadly it can be.  If I was educated about it, my daughter would not have it today.

Since we are just beginning our battle, I am still not completely educated, but I will share our experience as we go.  I started doing research on the internet, but found it to be so grim and all it did was make me cry.  As of right now, I am just waiting to hear what the doctors say since I do not know much and we all should not worry needlessly (even though I do still).

Courtney is 16 years old and a Sophmore in high school.  She has beautiful blond hair and gorgeous fair skin.  She lights up a room.  She has a very “sunny” personality and is always making me laugh.  She is very positive (even through her diagnosis), and is very intelligent and has all As and Bs in school.  She will be going to Western University  in Bowling Green, KY when she graduates High School.  She plans on living here, getting a job and attending school full time.  She wants to be a counselor for teens who are troubled.  She has never wanted children in the future, but in the last week has changed her mind and would like children when she is 30 to mid 30s.  She has 2 siblings here at home a brother who is 9, a sister who is 7, and an older sister 21 who lives out of state.

She has not had a lot of exposure to sun growing up as I always put 30+ spf on her, with the exception of this summer and last as she was more into tanning and wanted to look pretty.   I allowed her to go to a sun tanning salon for 3 one month sessions for special occasions, which I completely regret!!  We do not know exactly how she got it or how long she has had it.  The dr said it looks like she has had it for a long time by the size of it.   She has always had a raised mole on her left arm from a little girl.  She always called it her skin cancer kind of as a joke.  I told her it was not skin cancer as I looked up photos and the pics I saw of cancer did not look anything like what she had.  I wish I would have done more research even at that time, but I had absolutely no worries about her having cancer.  She just didn’t.  I should have known that a mole that grows in size is a sign of melanoma, but I didn’t again.  She started picking at it a few months ago.   The mole started to grow at that time and it would bleed when it was hit by accident in gym or against the door or wall.  I asked her if she wanted it removed since it bled constantly from bumps here and there. I tried making an appt with the first doctor, but they could not get her in until June 4, 2011, and her prom was May 14th, so I called another dr.  They got us in on May 6, 2011.  The doctor said that he has never seen anything like that before and he looked to be about 60-70 ish. He only removed the top of it and sent it to the lab to have it biopied.  He told us to call him on Tuesday, May 10th for the results.  At this time, I cancer does not even cross my mind as I just know that it will come back negative.  I call him on Tuesday and he said the results are not yet back as they had to do additional blood smears.  This was the first time I felt any kind of fear... but only slightly.  I said my first prayers that night and waited for Friday to come.  I received a call from him on Thursday, May 12, 2011.  I do not recall the entire conversation as I think I was in shock because I was truly expecting him to say... “everything looks great,” but he did not.  He said she has melanoma and it is active.  He said he works closely with a plastic surgeon and he will have to remove the tumor.  I told him I do not understand, “what is Melanoma?”  He said the tumor is malignant and it is cancer.  I hung up and started doing research immediately as I needed to be educated on this awful cancer when we go to the doctor..  The first thing that comes up is that Melanoma is the deadliest skin cancer.  I almost vomited and called my best friend.  After trying to do a little more research, I decided that I do not need to see or hear anything negative about this and I will just wait to hear from the doctor.  Dr. Hulsey saw us on Friday, May 13th.  He said it was very serious (as all cancer is) and he thinks she has had it for a while.  I told him that it only started growing the last few months bc she was picking it.  He said he will take all the “miracles” he can right about now.  He said the size was 6.2 mm and the tumor was a Level 4 (not stage of cancer, but depth).  I knew this was not good by the research I did. He told me about a few children’s hospitals that specialize in pediatric cancer, and we have chosen to go to St. Jude in Memphis, TN, if needed.   They then called Courtney into the room and he examined her.  She did not have any lumps under her unpits or anywhere on her body, which was great news.  The dr was very good with her.  After he left she asked me if he told me what kind of cancer she had as I did not tell her the day before.  The night before she did her own research and was hoping it was not melanoma.  She also found some terrible statistics on the internet and I told her that we cannot look up anything as it does not apply to her... she agreed.  So I told her the truth .. That she has melanoma.  We cried and I held her.  I told her that we are going to do anything and everything to get rid of this and we felt optimisitic that we will receive the care that she needs.  Dr. Hulsey scheduled a PET scan for Monday, May 16, 2011  at 11:00.  The PET Scan will tell us if the cancer has spread to her organs and/or her lymph nodes.  That night we had so many ups and downs.  She sat in my bed with me and we held hands and cried and talked.  She was very positve all weekend long and had a great time at her prom.  She looked absolutely beautiful.  She said she felt like she was getting married.  I will need to get those photos on my facebook. 

Monday, May 16, 2011
Courtney had her PET scan done and she did great.  She has never been sick so she had no idea what an IV felt like.  She said it was nothing... like a bee sting.  They had us sit for 45 mintues while the medicine went into her system.  The test then took about 30 minutes.  The technician told us the results will be in in about 48 hours.  We went to lunch at Red Lobster and had a great day.  At 5:30 the dr’s office called and said her results were in.  That was fast, and it made me worry.  They said they wanted us to come in at 8:30 am the next day.

Tuesday, May 17, 2011
We woke up early to go to the dr office to receive the results of her PET scan.  Before we left that morning, the doctor called and said he didn’t want us to waste a trip to BG and said they may see a spot on her liver and they need to do an ultrasound and MRI of her liver.

Thursday, May 19, 2011
Courtney had the MRI and ultra sound done on her liver at 6:30 am.  We stopped for breakfast and to drop Courtney off at school.  On the way home we received the results of the test.  The doctor said they still cannot tell if it is on her liver and that a PET scan needs to be repeated in 2 weeks, but they cannot wait that long to do surgery.  He said he would call us back today as he wanted to get her registered at St. Jude.  St. Jude called Friday to register her and they were supposed to call me back that day, but they never did.  Now, it is the weekend and we are waiting to hear when she will go to the hospital.  They need to get this terrible cancer out of her body ASAP.