Journal History
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Saturday, September 26, 2009 8:13 AM CDT
Jorge lost his battle with stomach cancer on September 13th. He is now cured in heaven alongside our darling angel Mark. He has left a huge hole in our lives, but will remain in our hearts forever.
Friday, September 11, 2009 1:27 PM CDT
I just wanted to update those of you who hve been checking in with me on Jorge's condition. Jorge was placed on hospice almost three weeks because his scans showed that his cancer had progressed even though he was doing chemo. He is going downhill very rapidly and it is so hard to watch. His mom is here from El Salvador visiting with him and the kids have been able to spend time with him. Brandon has gotten to the point that he would rather not see Jorge. We went through something similiar with him when Mark was sick, so we are not pressing the issue. Please say a prayer that Jorge does not suffer much longer is soon out of pain. It is going to be really hard on all of us, especially Ryan. He is so very close to his dad. But we will always carry him in our thoughts and hearts. Thanks!
Friday, July 17, 2009 8:55 AM CDT
Hi, it's been awhile since I have updated and not even really sure if anyone besides out family even looks at this page. But if you are reading this, I ask that you keep our family in your prayers. Jorge, Mark's dad, was diagnosed with Stage 4 Gastric Adenocarcinoma. Basically he has a tumor that has taken over his stomach and has spread throughout his abdomen. He has lost 35 pounds in the past two months, has had surgery to place a stent in his stomach to allow liquids and some foods to pass through, and has had one round of palliative chemo. His counts have recovered from the chemo and he will be starting another round either on Monday or the following Monday. The chemo is supposed to give him a few more months of life. This is obviously very devestating to our family as we already lost Mark to cancer and now my children are going to lose their father. Just doesn't seem fair. Please pray that he has some time left so that the kids can make some more memories with him. I will update again soon.
Thursday, December 25, 2008 7:16 AM CST
I just wanted to write and wish everyone a Very Merry Christmas! This year has just flown by and of course we miss Mark as always. This year, Ryan started fullday Kindergarten. He is getting so grown up and is so full of energy. Brandon is in 4th grade and although we have had some more issues with him this year, he is making progress and such a joy! I decided to go back to school fulltime in the fall and hopefully with get my degree sometime in this lifetime. :) I want to thank all of you who still check in to see how we are doing. My prayers go out to all the angel familes, the familes still going through treatment, and all the rest of the familes who have had their lives touched by cancer. Merry Christmas and Happy New Year!
Thursday, January 3, 2008 7:38 PM CST
Happy 10th Birthday Mark! I know you hated birthdays, so I will keep this short and sweet. You are always remembered and always loved. I miss you Marquito!
Tuesday, November 27, 2007 11:38 AM CST
It has been a really long time since I have written any kind of update. It's really hard to believe that this will be our 6th Christmas without Mark. As usual, we will be goin gup to Children's Hospital to take toys up to the kids on the Oncology floor. This year will be different because they opened a new wing and the kids will be in the new wing. I am quite excit4ed to see what it looks like. Also, anyone who iwll be in the DC area, should come down to the Old Post Office Pavillion to see the Candlelighter's Tree. www.candlelighters.org It really is a very special event.
As far as our family, we are doing ok. We have had sort of a rough year, but hopefully 2008 will bring better things. Ryan is 5 now and is finally in school. He goes to Head start everyday. He is really enjoying it and is making lots of new friends. Lately I have been having a little trouble with him. Ryan was born after Mark passed away, but he has been having tantrums lately telling me how much he misses Mark and asks me to go and get him and bring him home so that they can play together. Oh how I wish I could...
Brandon is doing great. He just turned 9. Yes, I feel very old...He is going to anothe new school this year. He seems to be making a lot of progress and is doing well. He is just the sweetest child.
Anyway, I hope everyone has a very Happy Holiday and please keep all the kids who are still dealing with this damn disease and for the families who have lost their children in your prayers.
Thursday, January 4, 2007 6:11 PM CST
Hello all! Sorry it has been so long since I have last written. I hope everyone has a nice Holiday and Happy New year! Ours was great! I am writing today on what would have been Mark's 9th Birthday. Mark hated birthdays....I have no idea why. Maybe he knew something in his short life here, that we didn't. Anyway, Happy Birthday Mark! Please remember to keep all the kids who are still fighting this dreadful disease, the families who are just finding out a new diagnosis, families who have just gained an angel, and the doctors and researchers who are trying to find a cure for this disease and all other childhood cancers in your thoughts and prayers. I will try to update how we are doing sometime soon. But for today, I just wanted to celebrate Mark's Birthday.
Friday, July 7, 2006 9:06 AM CDT
I have been wanting to update Mark's webpage for sometime, but for some reason, I have not been able to. July 1 was 5 years since Mark died. It seems so odd that it has been 5 years since I last held my baby in my arms. Sometimes it feels like just yesterday and sometimes it feels like another lifetime ago. I think this year was especially hard for me because Ryan is now the same age as Mark was when he died. He looks so much like Mark and definitely has his spirit. That's not always a good thing. ;) It's funny, sometimes when we talk to people about Mark and about how much Ryan reminds us of him, Ryan will turn to us and wink like he knows something that we don't.
Anyway, for the most part, we are doing very well. Brandon just started back to summer school. He is making so much progress, but he definitely does better when he is in school and has a set schedule. He will be starting a new school in the fall which is due to how much progress he is making. He will still be a special ed class, but it will be more advanced with kids more on his level. Hopefully I will be able to enroll Ryan into Pre-k or daycare in the fall. He really needs to be around more kids.
Thank for remembering my son and coming to visit his webpage. It means so much to all of us that his memory is still alive. Please say a prayer for all the familles that are just receiving the news that their child has cancer, the familles in the middle of treatment and the familles that are no longer able to hold their children close to them.
Friday, July 1, 2005 9:06 AM CDT
Four years ago today, Mark made has journey to heaven. It is hard to believe that he has been gone longer than he was with us here on earth. We have so many memories of Mark and he remains in our thoughts everyday. Sometimes we get little hints that he is still here with us. Something will happen and we will just say, "Mark is visiting." His little brother, Ryan, looks more and more like Mark everyday. He also has that same mischievious way about him that makes us think that Mark is definitely helping him out.. :) We don't have any huge plans for today. We will be going up to Children's Hospital tomorrow to deliver some things to all of the kids on the Hem/Onc floor. Thank you to everyone at Hess Construction for donating stuff to take up there. It is wonderful that you help us keep Mark's memory alive. I found this poem on the Heavenly Lights website and thought it was nice:
A FACE IN THE CLOUDS
I looked towards the clouds today
and for a moment saw your face
And wondered just where you have gone
with a hope it's a better place
Did you show yourself to me today
to tell me you're alright ?
Or was it just a daydream
playing tricks upon my sight
Then I thought of when you left
you did not say a word
Yet the look you gave us said it all
in our hearts, your good-bye was heard
You have changed our lives forever
Your time here not in vain
and hope you know we tried it all
to keep you safe from pain
We will always feel the void inside
because you are not here
But each new thought you send our way
lets us know you're always near
So until our journey nears it's end
And we hear the angels sing
We'll face each new day as it comes
and live off the love you bring
Author Unknown
Anyway, I hope everyone is having a wonderful summer!
Kelly
Friday, March 18, 2005 8:07 AM CST
My goodness, I cannot believe ithas been more than a year since I have updated this page. No wonder my mom has been getting on my case about doing it. So many things have happened and changed since I last wrote. Jorge and I are no longer together. We do still remain great friends and he has turned out to be a better father than I could have ever imagined. He is very involved with the kids and has actually been brave enough to take both of the kids with him for overnights at his house. I sold our house in Upper Marlboro, MD last October. It was very sad leaving our house since we had so many happy memories of Mark there. That is also where he died... So, it just felt odd leaving... I really needed to get Brandon into a better school system if I wanted to see any improvement in him. He was officially diagnosed as being on the Autism Spectrum about two years ago. The schools where we were living were just not up to par. I cannot even believe the improvements he has made in the few months since starting his new school. He is now talking more, potty trained, writing, reading some... It's just amazing... I bought a townhouse in Damascus, MD. This is where I grew up and had never imagined moving back up here...My mom is about 5 minutes away. So, that is a big help. But it is nice, if not a little boring being out in the country... Ryan is now two and a half. He is so tiny. But definitely has Mark's spirit in him. He is a handful and a half... He looks a lot like Mark now. And keeps me on my toes with all of his tricks... He is now on his second daycare since we the move. Just cannot seem to find the perfect place like we did at our old house...
I try to remain active in childhood cancer activities. This past Decemeber, we helped with the Gold Ribbn Tree in Washington D.C. That was through Candlelighter's. We continue to visit Children's National Medical Center in Washington, D.C. where Mark was treated. It brings such a good feeling to see the kids light up with a simple little toy or gift. I am still a member of our online Neuroblastoma support group and online Neuroblastoma Angel group. This past summer I went to Chicago again for the annual CNCF Neuroblastoma convention. It was nice to be able to get together with a lot of families who have or had children with NB. I'm not sure if I will be able to attend this year, but we will see how that goes. There are so many children that we have come into our lives either through the internet or in real life who are really struggling right now or who have recently become angels. Please say a prayer for those kids and their families. Cancer is such a horrible thing and no one should have to go through the hell that we did. Please say a prayer that one day a cure will be found for this dreadful disease. I think awareness and raising money to look for new treatment options is the key. In the 6 years since I have been in the NB world, there really have been no significant increases in the prognosis for a child with NB. It remains to be very poor. Depending on where you look for the data, a child has about a 10-30% chance of living more than two years with this disease. Thanks for checking in and take care.
Thursday, January 15, 2004 1:22 AM CST
I cannot believe it has been about 5 months since I have updated Mark's webpage. It certainly does not mean we do not think about Mark anymore. Nothing could be further from the truth. We remember Mark every minute of the day. And if an hour goes by that he is not in our thoughts, he sends us a little sign to let us know he is doing ok. :) We made it through Christmas. It was so hard to believe that this was the third Christmas without Mark here with us. This year was fun because Brandon is finally starting to understand Christmas. Of course it is now three weeks past Christmas and he still wants to sing Christmas carols... He even got a little upset with me that I took down our tree and was telling me I need to put it back up... Ryan had fun too ripping open all of his gifts. We went up to the hospital on January 3 to give quilts to all of the kids up on the hem-onc floor. It is always so nice to be able to go up and visit. It almost feels like going home. Of course, it seems like there are so many new nurses up there, we hardly know anyone anymore. But that's ok, it still feels good to see the kids' faces light up when you knock on the door and walk in with a little surprise for them. January 4th was Mark's Birthday. He would have been 6 years old. It is so hard to belive my little boy would have been in Kindergarten. I do get sad when Brandon goes to school everyday, knowing that Mark should be getting on the school bus also. But I need to remember to be thankful for the time I did have with him and not the times we didn't get to share together.
I guess I should update on how we are doing. Ryan started daycare in December. He is loving it! I actually like it also. Which is saying a lot since as my mom tells me, I criticize everything and I have nothing but good things to say about this center. He is all over the place, running, jumping, dancing... He is such a little ham and daredevil as well... I won't go into the gory details, but let's just say that we have already had to make a trip to the ER to get stitches on the day before his birthday because of him trying to do wild tricks! :) He reminds me so much of Mark at that age. Now if he would only grow some hair, I would be so happy! Brandon is doing well also. He is still in school. He went back to school last week after being off for winter break. He had been sick with hand-foot-mouth disease over the break, but is 100ine now. I am counting the days until the school year ends and we can get him out of that darn school he is in... Can you tell I am not in love with his teacher? We do have a lot of work to do in making decisions in where he will be going next year and we really need to get the ball rolling. Sometimes I really think that dealing with cancer (not the death part),was easier than dealing with Brandon's issues. with cancer, there are protocols that are followed and for the most part, doctors agre on the plan of action. With Brandon, we have different doctors, telling us different things, and the school telling us other things, etc... It is enough to drive someone crazy. I've already told Ryan he is not allowed to have any sort of problems or he is going up for adoption... (I'm kidding of course...) And I guess the most exciting part of the update is I am FINALLY going back to school. I will be starting classes at our local community college next week. I graduated from high school ten years ago, but I guess better late than never... I'm not sure what I want to major in yet. I'm leaning towards nursing or something else in the medical field, but we will see. For right now, I am just going to start with the basic classes to get my feel wet. Anyway, I hope everyone is doing ok, and had a Happy New Year! I will try to update again soon. Please remember all of our children who are still in the battle and remember those parents who do not their angels to hold any longer here on Earth.
Kelly
Thursday, August 14, 2003 9:41 PM CDT
Ok, I'm going to try again to update this webpage. Everytime I get on, Brandon knocks me out of the way to get on the computer and play his games. He's my little computer geek... :) Sorry for not updating since March for those of you who still come and visit. Things have pretty busy here. July 1 was the two year anniversary of Mark's death. It was a hard day for all of us. Sometimes it feels like just yesterday he was here with us and sometimes it feels like another lifetime ago. I think most people believe it has been two years, so we should be over it now. That is so untrue. It seems to get harder with each year, but we survive. Mark would not want us to give up as he was such a fighter and he showed us what it really means to live. He lived more in three and a half years than some people live in a hundred. And we know one day we will all be together again. I do get very mad knowing that Brandon has to grow up without his big brother to play with. They were the best of friends and now, I don't know if he will actually remember Mark. He loves watching the home movies of the two of them together. He will sit there for hours laughing and touching the screen. And Ryan, well he will only know Mark through photos and by us sharing our stories of Mark.
This past July I went down to Tampa, FL to visit a good friend whose son died of a brain tumor two months before Mark. We went to see John Edward. No, we didn't really think we were going to be read. It was just a fun trip to make and get the chance to get together.
Brandon is doing great and making so much progress. He is out of school for August. We are so ready for him to go back to school. He will have a new teacher this year. I'm not too sure how I feel about that right now. Guess I'll have to wait until I meet her next week. Brandon is starting to talk a lot more and he even asked me for a peanut butter sandwich today. For those of you who know him, you know this is truly a miracle...He lives off of fruit and McDonald's french fries the rest of the time.
Ryan is awesome. He is almost a year old. I can't believe how time flies... He is all over the place. He is not walking by himself yet. But he loves to cruise the furniture. He is such a cutie. If I wasn't such a bad mommy, I would have more pics to put up of him. But, unfortunately he suffers from third child syndrome. He looks so much like Mark. And he has the biggest dimples just like his daddy. Well, enough about us...
September is Childhood Cancer Awareness Month. You can check out the link at the bottom of the page to find out more about the events being planned for this year in DC. I will definitely be there this year. Had to miss last year because of a medical emergency with Brandon, but nothing will stop me this year...
We have so many friends that are losing the battle with this beast we call cancer right now. Please say a prayer for their families that they do not have to suffer and that they gain their wings peacefully.
Take care everyone.
Love,
Kelly
Sunday, March 2, 2003 9:53 PM CST
Well, I have finally dug myself out of the snow to be able to write a quick update on our family. :) I hope everyone is doing ok. The Salvador's are doing just fine. Never boring... We found out that Jorge is going to have to have surgery on his foot in the next few weeks. So, he will be home with me and the kids for a few weeks. Can't do much landscaping with his leg in a cast. I can't imagine Jorge sitting around for very long though. He gets bored just beiong off on the weekends. But he is a very good daddy and husband, so he deserves the break. Brandon is doing great at school. School has been closed quite a bit this past month because of the snow, hopefully we won't be getting any more of this white stuff... He is starting to talk a lot more and he is doing ok with his new little brother... Ryan is almost six months old now. I can't believe how fast the time goes. Before I know it he will be walking and talking. He is just so cute, and everyone asks where I found him because he looks so different than Mark and Brandon. He looks a lot more like my side of the family and less like Jorge than the other two did. Ryan is rolling over both ways now. Of course, he always seems to do it while I'm in the other room, so I never get to see him do it... I am working part time and enjoying getting out of the house. I'm still considering selling our house so we can move to a new school district, but everything is just so expensive right now. We'll see how that goes. I guess I should at least for the end of the school year so Brandon doesn't have to switch schools in the middle of the year. Anyway, that is about it for us. Take care and I'll update again soon.
Love,
Kelly
Tuesday, December 24, 2002 at 08:14 AM (CST)
First of all, I would like to wish everyone a very Merry Christmas! I am sorry that I have not updated Mark's website for a few months, but I don't really have a lot to say! I guess I should tell you that Ryan is almost four months old now. He is getting so big. I put a picture of him on the website, but it didn't turn out that great. I think I'm going to have to go back and edit it. Anyway, he has had colic and that has been such a pain, but he is finally getting over it. Thank God! Brandon is still going to school. He is off right now for Christmas break. Hopefully will return to school the first week on January. We have been having a problem with him not wanting to ride the school bus, but hopefully, he will go back without too much of a fight. We kept quite busy in November and December helping get ready for the tree lighting for Candlelighters. It was a beautiful event. This will be the second Christmas without Mark. I think this one has hit me harder than the first year. Last year, I acted like everything was fine, just to prove to everyone that I was fine, but this year, I don't feel the need to prove anything to anyone. So, I can cry if I want to, scream if I want to, and it is my choice... :) Anyway, here is a little poem anout Christmas that I came across this morning.
MY CHRISTMAS IN HEAVEN
I see the countless Christmas trees
Around the world below,
With tiny lights like Heaven's stars
Reflecting in the snow.
The sight is so spectacular,
Please wipe away the tear
For I am spending Christmas
With Jesus Christ this year.
I hear the many Christmas songs
That people hold so dear,
But the sounds of music can't compare
With the Christmas choir
Up here.
I have no words to tell you
The joy their voices bring,
For it is beyond description
To hear the angels sing.
I know how much you miss me,
I see the pain inside your heart,
But I am not so far away,
We really aren't apart.
So be happy for me, dear ones
You know I hold you dear.
And be glad I'm spending Christmas
With Jesus Christ this year.
I sent you each a special gift
From heavenly home above.
I sent you each a memory
Of my undying love.
Please love and keep each other,
As my Father said to do.
For I can't count the blessings or love
He has for each of you.
So have a Merry Christmas
And wipe away that tear,
Remember, I am spending Christmas
With Jesus Christ this year.
I hope everyone has a safe and happy holiday. I will update again soon.
Love,
Kelly
Sunday, October 06, 2002 at 10:37 AM (CDT)
Hi, I thought it was about time that I updated Mark's webpage. First of all, I should let everyone know that we have a new addition to our family. Ryan Alberto Salvador was born on September 7, 2002. He was five weeks early, but is doing great. He weighed 6 pounds 7 ounces and was 19 inches long. He is such a good baby and is almost sleeping through the night. He looks a lot different than Mark and Brandon did when they were born. I'm thinking that one of my children is actually going to look like my family and not exactly like their dad. I will put up a picture of Ryan as soon as I get my pictures developed. Brandon is doing good. He started going to school full-time in September. He was really enjoying it. Unfortunately there was an accident at school and one of his fingertips was cut off. He was rushed up to Children's Hospital in DC and they took care of it. He seems to be doing ok, but has not been to school for the last two weeks. I am really hoping that he will start back tomorrow as he is getting really bored sitting at home with Mommy and the baby. I guess I should mention also that my mother-in-law is here visiting from El Salvador. She's going to be here for a month. Please say a prayer that I don't go crazy in the next three weeks. :) Another thing going on right now is that we are looking into selling our house and moving to another county. The school system in our county is not the best and since Brandon is now school age that is an important thing for us to consider. So, hopefully we will be able to sell our house and find something else that we can afford. Well, that is about it for us. I hope everyone is doing ok. Please keep all of the children who are fighting NB and all other cancers in your prayers. And pray for strength for the parents who are going through this as well. Take care.
Kelly
Wednesday, July 31, 2002 at 12:12 AM (CDT)
Hello everyone. I haven't updated this page in so long, I don't even know where to begin with everything that is going on with our family. We are doing pretty good, I guess. I am still pregnant. I have had a few scares and ended up in the hospital with some complications, and was threatened with having to stay in there until the end of September if I didn't take it easy. So, I was good and stayed in bed for a little while. Let me tell you, that certainly is not easy with a very energetic three year old running arond the house. But thankfully, things seem better and I am out of danger for now. I had another sonogram while in the hospital and yes, I'm still having a little boy. Everyone keeps asking me what I am going to name it. I am so bad about thinking about names. I keep calling him Bob. I'm not really going to name him Bob, and my family is getting so mad that I won't stop calling the baby Bob. We really need to get started working on the nursery, but things have been so hectic, that we haven't had a chance yet. We did manage to redo Brandon's bedroom over the weekend. It looks so cute. But I have learned one thing. I am not doing anymore wallpapering with either my mom or Jorge. They get really mad when the paper is lined up perfectly :) Brandon is doing really well. He is out of school right now. I've been busy with him and his new doctor. I have been fighting so much with the school system lately to get him the proper help and I am learning that at least in PG county, that it is not easy to fight with these people. I don't think they realize though that I fought for three years to get Mark the proper care and I am not afraid to fight with them to get Brandon the proper schooling. We'll see how things go when school starts back up in the fall. Brandon will be going fulltime five days a week. I really hope he likes it.
I guess I forgot to mention that in June my mom and I went to Chicago for a Neuroblastoma Conference. It was put together by another mom whose child died of NB. There were so many families and doctors there. It really was a wonderful experience and I learned so much. Can't wait to go again next year. Well, I guess that's it for now. Thanks for keeping us in your thoughts in prayers. I will update again in a few weeksand hope to put up some different pictures soon. Take care and God Bless...
Thursday, June 06, 2002 at 03:54 PM (CDT)
I have a bit of good news to report!!! We found out a few weeks ago that we will be having a baby boy. It's not twins as we were very worried about. THANK GOD!!! They just moved my due date up to the beginning on October. Brandon doesn't understand that he will now be a big brother and that mommy will be having a baby. He has noticed my huge stomach though. Kind of hard not to notice, He keeps grabbing it and saying tummy. How nice, he finally learns to talk and it is to make fun of me!!! That's about it for right now.... Take care...
Kelly
Wednesday, May 15, 2002 at 08:48 AM (CDT)
Well, it's been a few months since I have written. And I have been reminded that people still come and visit our website, so I'll make a short update... :)
Things are going good at our house. Brandon is loving school and mommy is loving the break in the afternoon that it offers her! Brandon has been making a lot of progress at school and will start going full-time in the fall. Jorge is keeping very busy with work. And when he is off, he decides he does not just want to sit around the house. He starts new "projects" in our yard. He is a landscaper so he thinks we need to landscape every square inch of the yard. I am looking forward to the end of June when I will be heading out to Chicago for a meeting with other Neuroblastoma parents that I have had the pleasure of getting to know online over the past three years, It will be really exciting to finally put a face to the name of so many people that I have become very fond of over the years. I did manage to take a quick trip down to Tampa in March to visit a friend for the weekend. She lost her son, Dalton, to Pineoblastoma, just two months before Mark died. We were in the hospital together when the kids were getting treatment, but she moved to Tampa last year and we had not seen each other in a long time. I had a great time!!! But I realized I will never be moving to Florida, it is very hot!!! Oh, and I guess I should share the big news. I am pregnant again. I am due in October. I have a sonogram on the 24th of May to make sure everything is ok and to see if it is a boy or girl. I am at a point where I can start to relax as I made it into the second trimester without miscarrying... So, hopefully everything is just fine... Well, I guess I have rambled on enough. Thank you for coming to visit and have a wonderful day!!!
Love,
Kelly
Tuesday January 22, 2002 10:56 PM CST
It has been such a long time since I have updated. I don't even know where to start. We made it through the holidays. It was so hard to wake up on Christmas morning and not have Mark ripping open the gifts. We spent the day at my mom's house and Brandon received A LOT of new toys and clothes. Good thing he's not spoiled!!! We went down to Children's Hospital on Christmas Eve to give out toys to all the kids on the Oncology floor. It was so nice to see all of our old nurses. New Year's Day was really hard for me. It was the six month anniversary of Mark's death. I can't believe it has been six months since I held my baby boy in my arms. Then on January 4th, it was Mark's 4th Birthday. Brandon has kept me very busy during all of this time though. He started going to preschool five days a week. He seems to enjoy it. Although it was a little bit of a hassle to get him onto the bus at first. Today whan he say the bus, he skipped down the sidewalk to get on. I'm glad he is getting used to it. He really needs to be around other kids. He really misses Mark a lot. He watches the home videosof Mark all the time. He has been imitating the videos and sometimes he scares me. He sounds so much like Mark and he is really starting to look like him. Anyway, we took Brandon to see a nutritionist last week to see if there is something we can do about his food aversions. The doctor seems to think it is something mental and not physical. so, she will be looking into getting brandon into a feeding clinic. She said he definitely looks healthy. He looks like a football player to me. Let her try to pick him up all the time. He weighs about 44 pounds now. Anyway, Brandon has an appointment to see a neurologist next week. I'm not sure if I have said this before on here, but Brandon is speech and developmentally delayed. So, we are trying to figure out what exactly is going on. The following week he will have a hearing test to make sure everything is ok there. Well, thank you for checking in... we appreciate all of your thoughts and prayers.
Love,
Kelly
Tuesday, December 11, 2001 at 11:26 AM (CST)
Sorry it has taken me so long to update this page. It seems like every week something bad is happening to us. Anyway, the latest is that I had a miscarriage last week. So, I guess Brandon will have to wait a little while longer before he gets a anew little brother or sister.
Thanksgiving was very hard for us. It just didn't seem the same without Mark being here and running around the house like a mad man. It was just very quiet. I can only imagine how Christmas is going to be. Although we spent last Christmas in the hospital, it was still very special. I think because we knew in our hearts thatit would be the last Christmas that we would be able to spend with Mark. I have not even had the strength to put up a Christmas tree or decorations. I am thinking about doing that sometime this week as it is not far to Brandon for us to just forget about Christmas. He is still here with us.
Brandon will be starting a special preschool at the beginning of January. Hopefully it will help him with his speech problems and other delays that he has. The teacher seems very nice and we will be going sometime next week to watch the kids and see how everything works at his new school. I hope everyone has a wonderful holiday season. You all will remain in our thoughts and prayers.
Kelly
Friday, November 02, 2001 at 10:36 PM (CST)
Sorry I have not updated for quite awhile, but nothing has really happened in the past few months. We are still trying to get used to living our lives without Mark here with us. There are good days and bad days. I'm sure with the holidays coming up, a lot of new feelings will appear. I do have a bit of good news. I found out that I am expecting a baby and I am due in early June. I know that a baby will not replace Mark, but I believe it will be nice to have another baby around the house. I know that Brandon is getting lonely being an only child and now he will be a big brother. Brandon will be turning three in two more weeks. At that time we will start him in a half day preschool. I'm really looking forward to that. All in all things are going well here. I will update again soon. Thanks to all.
Kelly
Wednesday, September 05, 2001 at 03:25 PM (CDT)
It has been a little over two months since Mark died. It has been rough, getting used to not seeing his smiling face around the house. It sure it a lot quieter with out him singing all of his favorite songs and dancing along to the videos. It is calmer without trying to catch him before he tries to escape the house on one of his adventures. It is weird not having to break up one of the many fights between Mark and his younger brother Brandon. It sure has been lonely not hearing his sweet voice and not having his precious body to hold at night.
We are still adjusting to the void he has left in our home, but unfortunately, we know it is a void that will never be filled. I am still trying to go back to work. I have had many job offers, but still have not found the perfect place for Brandon during the day. I have been at home so long, I can't imagine putting him in daycer, but I know he would really like to be able to be around other kids his age. And I know I need something also to focus on.
September is Childhood Cancer Awareness Month. You can take a look at the website at the bottom of the page to learn more about the activities that will be going on this month and things you can do to bring awareness to your area. Next week, I will be going to Washington, DC to attend different events and meeting many people who's lives have been affected by childhood cancer. The prurpose is to bring awareness to Capitol Hill of all the different issues that need to be addressed on Childhood Cancer. I went last year and met so many wonderful people, including Dr. Reynolds a truly amazing man who is one of the leading researchers of Neuroblastoma. I look forward to seeing him and many other parents there this year. I will try to udate again next week and let you know how things are going...Take care...
Wednesday, August 01, 2001 at 09:45 PM (CDT)
Today marks one month that Mark passed away. It was a pretty uneventful day. I was very sad to realize that a month has passed already since I have seen my precious son. I went to the cemetery to visit his grave. These past few weeks have been very hard on all of us trying to go on with our lives. We all feel a big void that no one could ever fill like Mark. Brandon seems to really miss his big brother even though he is too young to realize where Mark is. He goes and gets the photo albums off the shelf everyday and likes to look through them and look at the pictures of Mark. He also really enjoys watching Mark home videos. He just sits there in awe of his brother and laughs so hard. Everyone has returned to work. I am in the process of looking to return to work. Which for me is a big deal since I have not worked since I became pregnant with Mark over four years ago. I think it would do Brandon good to go to daycare and be able to play with other kids his age instead of sitting home with mommy all day. Also, it would be nice for me to
start getting out of the house again.
I wanted to mention a CD I bought a couple of weeks ago. The singer is named Cindy Bullens and the CD is Somewhere Between Heaven and Earth. I highly recommend this CD. It is just awesome. She lost her daughter a few years ago to cancer and sings beautifully. She speaks what so many of us parents of angels are thinking. She truly is very talented. You can checkout her website at www.cindybullens.com.
Well, that's about all I have for right now. Thanks to everyone who continues to check Mark's website. We really could not get through all of this without everyone's help. Thanks for all of you thoughts and prayers.
Kelly
Monday, July 02, 2001 at 07:29 PM (CDT)
This will probably be my last update for awhile. I will check in from time to time to update how the family is doing. First of all, I would like to thank everyone who has been there for us these past few years. I will not even try to name names as I know I will forget someone very special. We have had so much help from our family, friends, and perfect strangers. I want you all to know that we appreciate it so much.
Mark's funeral service was very nice. We had Mark's viewing last Tuesday, and so many wonderful people showed up to lend their support to us. On Thursday, we had the funeral service and it was just beautiful. We played Precious Child and also Tomorrow from Annie. Afterwards we went and had the ceramony at the graveside. It all turned out very nice I thought. I think I held it together pretty well, I figure I have time to have a nervous breakdown after all of this is over with. Brandon does not seem to know what is going on. Since he is not really talking, he hasn't asked about Mark. But it is obvious that he misses Mark very much. He loves to look at the pictures of Mark and watch the Mark videos. He just runs up to the TV and starts kissing the screen when Mark comes on.
I will end this for now. I will thank everyone once again. We would never have been able to make it through these pat few years without everyone's help. THanks and we love you all...
Monday, July 02, 2001 at 05:02 PM (CDT)
We will be having a visitation tomorrow July 3, between 2-4 and 7-9 at Kalas Funeral Home in Edgewater, MD. The funeral service for Mark will be held at Davidsonville United Methodist Church in Davidsonville, MD followed by the burial at Lakemont Cemetary in Davidsonville. Thanks to all for your love and support.
Sunday, July 01, 2001 at 05:37 PM (CDT)
Mark passed away around 1:45 this afternoon. He died peacefully in the arms of his daddy. Thanks to all for all the love and support you have shown us in the past two and a half years. We love you all. I will update again soon as oon as I know more more about the funeral arrangements.
Saturday, June 30, 2001 at 03:51 PM (CDT)
Not much to update today. Mark is about the same. He has been up a lot today and is responsive to our voices. But he has a look in his eye like he is so scared. I have noticed in the past two days that it seemed Mark's eyesight was going. I am sure of it today. I don't think he can see anything anymore. That is probably very scarey also for him. He has had some more bleeding from his nose and mouth. Last night he coughed up a lot of blood. He is still drinking some juice. But I hesitate to give him anymore because he ends up throwing it up and up comes more blood. It is so sad to watch this happening. Thanks for checking in and I will update again soon...
Friday, June 29, 2001 at 04:36 PM (CDT)
Mark had a very restless night last night. He just could not seem to get comfortable to go to sleep. We finally went to sleep sometime this morning. He has been bleeding more in his mouth and nose. He has been sleeping most of the day today and seems to be a little more peaceful. All the grandparents came to visit and Uncle Rusty came too. We had dinner delivered by some very nice people. We were so thankful for that because everyone is really getting tired of cooking. So, thank you. Anyway, I'll update again soon and thanks to all for your thoughts and prayers.
Thursday, June 28, 2001 at 12:17 PM (CDT)
Sorry for not updating Mark's page yesterday. There has not been much change though. He is still sleeping most of the time. He has been bleeding more also. He feels so terrible, but seems not to be in any pain at least. The hospice nurse came for a visit this morning and just cried. She said she did not know what to say and then left. Thanks for checking in and I will update again soon.
Tuesday, June 26, 2001 at 06:42 PM (CDT)
Mark slept all day again today. He has had some bleeding from his bottom, (I hink he was straining to have a bowel movement), bleeding from his nose and blood in his mouth. He look terrible and it is breaking my heart. I pray that God will take him soon and will put an end to his suffering. That has to be the hardest thing a parent can pray for. I would love to have him with me for a 100 more years. But I know that is not possible. Thank you all...I will update again soon...
Monday, June 25, 2001 at 09:36 PM (CDT)
Mark slept all day today. The only time he even opened his eyes was when we tried to move him around and he just would start to cry. I finally got him into our bedroom tonight. He has been in the living room for the past few weeks. Not wanting to leave there. But I moved him to the bedroom hoping that he would be more comfortable in the bed. The hospice nurse came today. She was glad to see that the pain patch is helping him. She did not have much to say except that she could not believe what a fighter Mark is and that she cannot believe he has held on so long. We cannot believe it either. I will update again soon. Thanks for all your thoughts and prayers.
Sunday, June 24, 2001 at 07:43 PM (CDT)
Mark has kind of a rough night last night. He did not sleep well. He kept waking up crying. Today has been ok, not terrible, but not great. He managed to drink some, but not as much as yesterday. The tumors he has growing on his head really seem to bother him. He keeps feeling around his head and making me feel them. It is so heartbreaking to watch. Thanks for checking in...I'll update again soon.
Saturday, June 23, 2001 at 08:46 PM (CDT)
Mark seemed to feel a little better today. The Fentanyl patch is definitely making him more comfortable. Also, it is nice not to have to hold Mark down to give him his pain meds every few hours. So, that helps. He was more alert today and stayed awake almost all day. He is drinking a little more today. He even had the strength to yell at Brandon to get out if his way because Brandon was in his way when Mark was trying to watch tv. He is sleeping soundly now. So, I think I will take advantage of this time and get some rest. Thanks for checking in and I will update again soon...
Friday, June 22, 2001 at 06:54 PM (CDT)
Mark is not well at all. I'm not sure how much more his little body can handle. He has been throwing up soem more. And when he does, he has a lot od blood in his vomit. He did not wake up too much today. THe hospice nurse came over again today. She talked to Mark's doctor and he finally agreed to start Mark on a fentanyl patch. It is a very strong dose, so it will probably keep him pretty much knocked out, but at least he should be comfortable. That is what is most important. I put the patch on his back tonight. The doctor said it should take about 8 hours to take effect, but after that, I don't have to worry about giving him medicine for three days. He is still allowed to take Oxycontin for breakthrough pain, if he has any. But he now off the Methadone. Thanks for checking in and I will update again soon.
Thursday, June 21, 2001 at 09:51 PM (CDT)
Mark is not doing well at all. He is sleeping all day for the most part. He is drinking some juice, but most of it, he ends up throwing right back up. And his breathing seems very shallow. I am just amazed that his poor little body is still holding on. Tomorrow we should be receiving a more concentrated dose of Methadone from the pharmacy so that he does not have to swallow so much. We'll se if that helps at all. Thanks for checking in...I will update again soon...
Wednesday, June 20, 2001 at 10:12 PM (CDT)
Mark had a pretty uneventful day again today. He woke up pretty early and just stayed in the living room watching movies. He is very bossy and makes us change the movies a lot!!! He doesn't seem to know which one he wants to watch. So, we have to put them in the VCR one by one until we hit the right one...His pain seemed about the same today. The doctor upped his Methadone dose today and also his Oxycontin. So, we'll see if that helps any. He still has not reached the level he needs to be able to go on a patch. He has thrown up a few times today. I think a lot of it has to do with taking medicine on an empty stomach. He mostly just sleeps off and on throughout the day. He still is at the point where he is not very comfortable being held. Uncle Rusty and Christina came to visit today. Of course, the grandparents were here...We can't seem to get rid of them even if we tried...Just kidding...Then this evening, Aunt Angie came over with Charlie, Elizabeth, and David. That was a nice visit. Mark is up right now watching Beauty and the Beast with his Daddy. They dod not get to spend a lot of time together as Jorge has to go to work everyday...I know it is hard on him not being able to stay here with MArk and spend more time with him, but somebody has to work to pay the bills. Anyway, thanks for all the love and support. We really appreciate it. I'll update again soon...
Tuesday, June 19, 2001 at 08:51 PM (CDT)
Mark is really not feeling well anymore. He wants to sleep a lot and does not want to be touched too much. The hospice nurse came to visit today and told me she was going to talk to Mark's doctors about better forms of pain management. She didn't call them...She says that she cannot believe the difference in Mark this past week. Well, he has gotten so much skinnier and has more tumors. She also said that she thinks his skin has changed colors. I received a call tonight from Mark's Nurse Practioner asking me about Mark and how he is doing. She told me that I could up his dose of Methadone tonight and she will talk to the doctor tomorrow about what else we can try. We had a special visit tonight from a family that lost their little girl, Emily about a year and a half ago. They brought Mark a little angel bear that had been hers. It meant so much to me. Mark used to like to flirt with Emily when we were in the hospital for treatment the first time around. Then we had a visit with the Farrell's. That was nice also. They really are so sweet. Mark is sleeping soundly now as I write this, so I think I will try to get some rest also. Thanks for checking in and I will update again soon.
Monday, June 18, 2001 at 07:28 PM (CDT)
Mark seems to be slipping further and further away from us. He is sleeping a lot in the days and nights. The pain meds are controlling his pain somewhat, but not all the time. Sometimes he acts as if he is confused as to where he is or who we are. It is so scary to watch this process. And so heartbreaking. A month ago, I had a little three year old boy who got into so much trouble and was driving us crazy and now, well, now, he can hardly lift his head off the pillow without being in pain. This is so unfair. At this point I am just praying that God has mercy on my sweet baby and takes him home. Away from the pain, away from the suffering, and away from CANCER!!! Have I said lately how much I hate cancer??? I want to thank everyone for their prayers, love, and support. I want to thank those who have been here for us through this ordeal...You know who you are...I will update again soon...
By the way, many people have asked for our address so they can send a card or something to the family or to Mark and Brandon. I will post it at the top of the webpage...Thanks for thinking of us...
Sunday, June 17, 2001 at 06:33 PM (CDT)
Mark woke up early this morning with his right eye totally bruised. His right cheek is very swollen also. He is really not comfortable being touched, but when he lays by himself he seems ok. He really hates taking his medicine. I took all of his clothes off today to give him a sponge bath and could not believe how skinny he is. He was 35 pounds a month ago and I would be surprised if he is even 20 now. He is drinking some juice today. Although in the morning, he did throw up a couple of times. All the grandparents came to visit today as usual as well as Uncle Rusty. The hospice nurse will be coming again tomorrow. She had called on Friday to see how things are going. I had told her about the same and she said she didn't need to make the trip out here then to see him. I guess I was just expecting a little more involvement with the hospice people then they really do. I will update again soon...Thank you for all your thoughts and prayers...
Saturday, June 16, 2001 at 11:15 AM (CDT)
Today is starting out pretty good. It is almost noon and Mark has already been up for a couple of hours. He is watching some of his favorite movies. You would think since we have hundreds of movies to choose from, I would not have to watch the same movies over and over again. Wrong... Anyway, he took his medicine okay this morning and is actually drinking some juice. He is starting to get a little moody right now, but I think he needs to take a nap. The tumor on his left eye is still growing. Yesterday he woke up with a a black eye and his right eye is black and swollen also. He can harldy open his right eye and cannot manage to close his left eye. Poor thing. His grandparents just showed up with Brandon, so now he has a little competition...I will update again soon. Thank you all for your love, prayers and support.
Friday, June 15, 2001 at 08:00 PM (CDT)
Mark has slept almost all day today. He only is waking up for a couple of minutes every couple of hours. He is not really taking any fluids in anymore either. He is deteriorating quite quickly. He is not dehydrated yet. But it won't take much longer. His oncologist told me the other day, that when children have such advaced cancer, they start to waste away. I probably could have put that a little nicer. But that is the reality. We are just treasuring what little time we have left with him. Thanks for all your love and support...I will update again soon.
Thursday, June 14, 2001 at 09:41 PM (CDT)
Mark is going downhill very quickly now. I noticed that his breathing seems to be different today. It seems he is working harder to breath. He sounds hoarse also. He is irritable and does not even want me (mommy) around him very much. Probably because I'm the bad one who gives him his medicine. Anyway, he just gets skinnier everyday. He spends most of the days and nights just sleeping. It makes me feel better when he sleeps though, because at least then he is comfortable. I talked to Mark's oncologist yesterday about starting Mark on a Fentinel patch, but he says that Mark is not on a high enough dose of narcotics to equal the lowest dose of the patch. He says if we put the patch on him, he will be totally knocked out. The hospice nurse is coming out again tomorrow. We will see how things go with her. Thanks for all of your love and support...I will update again soon.
Wednesday, June 13, 2001 at 01:35 PM (CDT)
Mark slept a lot yesterday (Tuesday) He is very weak, but still strong enough to boss everyone around and make his demands on us....The hospice nurse came yesterday and saw him. She said she could not believe how much he has changed in the week since she last saw him. He has lost more weight and has quite a few new tumors growing everyday. We had a nice visit yesteray with the grandparents and Mr. and Mrs. Farrell. Mark slept well last night. He has started throwing up though. So, it is tricky to get him to keep down his medicine. This morning, he really slept in and so did I. We woke up around 12:45. Pop-Pop came early in the morning to take care of Brandon. Now the rest of the grandparetns are here to keep us company. Mark received a very nice surprise today from his chemo angel. He got a huge bouquet of helium balloons. He loved them and they really brightened up his day. I will update again soon...Thanks for all the love and support.
Monday, June 11, 2001 at 10:06 PM (CDT)
Mark is not doing well. He is sleeping most of the day and night now. At least when he sleeps, he seems comfortable. So, I guess that is a blessing. It is so hard to see him getting sicker each day. I don't know how much more his little body can handle. The nurse from hospice is supposed to come and visit tomorrow. I am going to talk to her and see if she can get a more concentrated pain med. Mark really is fighting taking his meds and it is getting really hard to hold him to give the medicine. His arms are sooooo skinny, I am afraid I will break them if I try to hold them to give him his meds. Oh, I hate cancer and what it is doing to Mark. Thanks everyone for all of your love and prayers.
Sunday, June 10, 2001 at 06:46 PM (CDT)
Mark had a pretty good day today. Of course, he did not wake up until almost noon. He got up a few times and even talked and yelled at the tv, which is always a sign that he is feeling ok. We had lots of company today. Mark even let Uncle Rusty lay down with him. Usually he justs points Rusty right out of the room. It is now seven in the evening and Mark is asleep. He was only awake about five hours today. He doesn't seem like he is in a lot of pain, but I definitely think we need to talk to hospice about adding another pain med as the two he is on seem to wear off before it is time to give the next dose. Thank you all for your thoughts and prayers. I will update again soon.
Saturday, June 09, 2001 at 11:14 AM (CDT)
Sorry for not posting yesterday. Things are about the same though. Mark is sleeping a lot. He still is comfortable for the most part, just hates having to take medicine. He enjoys just laying down and watching his movies and bossing everyone else around. Mark has had so many visitors and reall enjoys seeing all of them. He really warms up to the ones with gifts for him. (He's no fool!!!) Even if they are complete strangers. He still manages to make us laugh. Mark will be lying ther ehalf asleep and I'll be trying to be very very quiet and all of a sudden he will start singing along with the movie he is watching. Well, thanks for checking in and I promise to not skip a day in updating so everyone is not worried....
Thursday, June 07, 2001 at 10:48 PM (CDT)
Mark had another not so great day today. He is getting very weak. He is not eating anything and only drinking juice. He did have several visitors today and enjoyed seeing them. He still seems to be comfortable most of the time. But I can tell he is starting to feel bad also. He just keeps making me touch his face and head to feel the tumors and it just breaks my heart. I know the end is near. It is just a matter of time. Mark was baptized today. He did very well. He just laid in his spot in the living room and din't complain at all. We did it very quickly so he would not get upset. He was a little annoyed that we were taking him away from watching Annie...I can tell his Hemoglobin must be getting low now also. His lips ar white, the only reason they have any color at all is from the juice that stains them. He gets so mad if I try to clean him at all. But I guess all little boys like to be messy. He knows what he wants though. He takes his turn with all of us. He sends one of us out of the room at a time just pointing his little finger and motioning for us to leave and signaling for another to join him in his spot. He mostly likes to send me away since I am the mean one who has to hold him down so that I can give him his medicine. Thanks for checking in and I will update again soon...
Wednesday, June 06, 2001 at 08:13 PM (CDT)
Today Mark was not feeling as well as the past few days. He did get up and play some, but it was obvious that his head was bothering him. He kept taking my hand to feel the tumors growing in his skull. He is hardly eating anything at all also. When he woke up this morning, he had some dried blood in his nose, but I did not notice any on his blanket or anywhere else. That is a sign that his platlets are getting low. Also the hospice nurse warned me that if I start noticing him bleeding either from his nose, mouth, or in his urine or stool, it is sign that the end is very near. I am just so greatful for the time we have had at home to enjoy him. Tomorrow we are having someone over to baptize Mark. I know he is three and a half, and we should have done it a long time ago, but at least we are finally doing it. At least my mom will be happy...:) Thanks for checking in and I will update again soon.
Tuesday, June 05, 2001 at 11:40 PM (CDT)
Mark had another good day today. He woke up in the morning and had a visit from a Hospice volunteer. She kept him company for a little while singing and telling stories so that I could have some time with Brandon. Then the hospice nurse came to visit and could not believe how much better Mark felt this wek compared to last...Thank God for Methadone. Grandpa came to visit in the afternoon. But Mark was feeling a little tired so he just laid and watched movies with me. Also Pop-Pop came to visit and Mark seemed to pep up after I gave him a little more of his medicine. The highlight of Mark's day was a visit from Cousin Charlie. Mark had a lot of fun playing with him and it was the most active he was all day. I guess we will have to invite the kids over more often. Grandma came a little later and stayed with Mark and Brandon while I went a took a much needed outing in the car. I think it did me good to get out of the house even if it was just a trip to the grocery store. Mark went to bed kind of early to night, but that is probably because he has not been napping lately. Thanks for checking in...
Monday, June 04, 2001 at 11:55 PM (CDT)
Today Mark had another very good day. I am so thankful that the Methadone is helping him with the pain. It really hurts to look at Mark and see how much he has changed in the past two weeks. He just went downhill so quickly. He is very skinny, his pants keep falling down. And he has tumors growing out of every part of is head. I just look at him and cry...I try not to do that too much in front of him, but it is hard...Thanks for checking in...
Sunday, June 03, 2001 at 05:03 PM (CDT)
These past two days have been wonderful. Mark has been happy and so full of energy. I guess the Methadone is really helping him. We have had lots of visitors this weekend and Mark has been having lots of fun playing with everyone. Today he is eating Doritos and drinking some Pedisure. Mark's grandparents went home today to El Salvador. They were very sad to leave, but were very thankful that they were able to meet Mark and spend some quality time with him. Thanks for checking in...
Friday, June 01, 2001 at 08:25 PM (CDT)
Mark is feeling a lot better today. We switched him to Methadone today. He feels good and is playing. He only slept for a little while in the afternoon. But it definitley helps with the pain. The hospice nurse came out today and said Mark looked good. He does have a lot of tumors growing on his head, face and neck. They really change from hour to hour. We'll see how tomorrow goes. Hopefully he will continue to feel well. Mark's grandparents are returning to El Salvador on Sunday. It has been a nice visit, bu it will be wonderful to have the house back to ourselves. Thanks for all the love and support everyone has shown us.
Thursday, May 31, 2001 at 08:51 PM (CDT)
Mark did not have such a good day today. He slept all ight and woke up around ten this morning. But he laid on the living room floor all day and watched movies. He did not get up at all today. He just kind of slept all day off and on. We do not know if it is the cancer causing this or just the change in his medicine. He will be starting Methadone tomorrow to see if he can stay awake a little better with that. Thanks for checking in.
Wednesday, May 30, 2001 at 05:54 PM (CDT)
Mark has been feeling very good these past two days. Yesterday we met his hospice nurse and she seemed nice. Although I don't think she has a lot of experience working with kids. We have had some problems with the pain meds. But we seem to have reached a dose that works well for Mark. We have had many visitors over the past few days and Mark just loves getting so much attention. Today, I took Mark out for a few hours. It was the first time he had left the house for a car ride. He had a very good day at the park and going out to eat. I pray for a few more days like today. Thanks for all of your support and love.
Monday, May 28, 2001 at 10:21 PM (CDT)
Mark had a pretty good day today. He woke me up at 5:30 in the morning. He was quite uncomfortable since he had gone all night without any pain medicine. But I gave him his medicine and after awhile he was ready to play. He stayed awake until about noon. I received a call from the hospice nurse letting me know that they want Mark to discontinue using the Tylenol w/ Codeine. The reason being, the doctors want to see how he handles the new medicine by itself. That way they will be able to make a pain patch for him. I tried just giving him the one med, but he was really hurting, so I gave in and gave him the Tylenol also. A nurse from hospice is coming tomorrow, so we can discuss this further then. Mark had a few visitors this afternoon and he was feeling great. He took another nap and needed more meds. But now it is quite late and he is up still playing. It is hard to see him with his ups and downs. But hopefully we will find the right medicine to keep him comfortable all of the time. The lump on Mark's left temple continues to grow and seems to move around a bit. That is very weird. The lump on his neck and in front of his ear seem to be about the same today. Thanks again for all of the love and support.
Sunday, May 27, 2001 at 08:30 PM (CDT)
Today was a pretty good day. Mark woke up around 10:30 and played outside with daddy for about 45 minutes. Then he came back inside and watched The Emperor's New Groove. He fell back asleep until 3:00p.m. In the afternoon, the family came over to visit and Mark was feeling great. He played on his swingset and played outside for a couple of hours. He also did a very good job flirting with Uncle Rusty's friend, Melissa. He is such a flirt. We did fingerpainting and got his handprints. It looks good, but he also managed to get his handprints all over everybody else. Around seven, he started feeling kinda bad. So, he took his medicine and laid down. He fell asleep around eight and is sleeping soundly as I write this. Thanks for checking in and thank you for all your love and prayers.
Saturday, May 26, 2001 at 07:49 PM (CDT)
Last night hospice brought four new medicines for Mark to start. One is for anti-seizure, one is anti- inflammatory, and two are for pain. Mark is was not able to start the Oxycontin for pain though because it is in a pill and he cannot swallow the pill. His pain seemed a little worse today. He was more uncomfortable and slept a lot more. Our family came today again to visit and Mark was able to play for awhile, but slept through most of the visit. Thanks for checking in and I will update again soon.
Friday, May 25, 2001 at 01:03 PM (CDT)
Mark is still feeling pretty good for the most part. The Tylenol w/ Codeine seems to be managing his pain okay. We had a visit yesterday from a hospice nurse to admit Mark into hospice. She seemed very nice and was here for a few hours explaining to us how everything works. I think we will receive another visit on Monday as long as there are no problems over the weekend. Mark woke up yesterday with his left eye almost swollen shut. The cancer seems to be spreading quickly. I noticed yesterday a little bump on the right side of his neck and in front of his right ear. This morning the are quite a bit larger. For the past few days Mark has been still playing outside and enjoying visiting with family who have come to the house to see him. He has been making me put his Barney Halloween Costume on him everyday. He runs around outside in the hot weather sweating with this costume, but it doesn't seem to bother him.
Thank you all for your prayers. They mean so much to us. I hope everyone has a wonderful holiday weekend.
Wednesday, May 23, 2001 at 04:01 PM (CDT)
Mark is feeling a better today. We have managed to keep his pain under control so far by upping the dose of Tylenol w/ Codeine. The doctors are planning on giving Mark some kind of patch next that will give him a continuous amount of pain meds. But for the time being, he is okay. We were not able to have scans done on Tuesday when we went to clinic, but hopefully within the next few days we will know something. Mark has been very active today. He has been up and running around which is a good sign that he is not in pain right now. He is sleeping well and today he started to eat a little more. Thank you all for all of your prayers and support. I will update later.
Monday, May 21, 2001 at 01:55 PM (CDT)
Mark has started to show signs that he is getting sick. Over the weekend, he started slowing down and was uncomfortable. He also has a lump on the side of his face that is probably a new tumor and he is limping quite a bit. We have started Mark on Tylenol w/ Codeine and that seems to help him with the pain for now. At least today he is up and walking around. We will go to see the doctor tomorrow and discuss things further. I will update again after our doctor visit. Thank you all for your love and support.
Monday, May 14, 2001 at 10:46 PM (CDT)
I have added some different pictures to Mark's album. I haven't had a chance to get new pictures developed yet, but I thought it would be nice to see some different pics. Mark is doing okay. We have noticed he is going to sleep a lot earlier. We are hoping that it is because he is wearing himself out playing outside all day, but who knows. It very well may mean the cancer is starting to spread more. Mark has a clinic visit tomorrow. So, we will discuss this with his doctor. He does not appear to be having any pain. So, that is good. Mark and Brandon are continuing to enjoy their visit with their grandparents. Mark finished up his Fenretinide tonight. He will get a two week break now from it. It is so weird to have a drug that the only side effect is chapped lips. It's hard to believe that it could actually be helping.
Thanks for checking in. We appreciate all the love and support.
Friday, May 11, 2001 at 02:59 PM (CDT)
Mark just continues to amaze all of us. He is doing great and is feeling wonderful. He is half way through his course of Fenretinide this week and has been very good about taking it. It really is a lot to ask a three year old who does not eat solid foods to take 15 pills a day, but he somehow manages it. Mark and Brandon are both having a great time with their grandparents this week. Mark has managed to run his off Grandpa off, he said Mark really wore him out and decided to go to work with Jorge during the day doing landscaping. And two days ago, Mark managed to make his grandmother fall down a hill and sprain her ankle. Poor people are never going to want to return to the United States for another visit... Mark has a clinic check-up on Tuesday the 15th to see how his counts are and just so the doctors can have a look at him. Mark and Brandon will be going to their other grandparents house tonight for the weekend and possibly to go see Barney at the Baltimore Arena this weekend. Mommy is just so sick of Barney and is letting the grandparents have the pleasure of sitting through yet another Barney program....Thanks for checking in and for all the support and love that everyone sends us.
Monday, May 07, 2001 at 09:52 PM (CDT)
Mark continues to do well. He really enjoyed meeting his grandparents. They arrived Friday night from El Salvador, but Mark and Brandon did not see them until Sunday. They went to visit with my parents for the weekend and that gave Jorge a chance to see his parents. He had not seen them for nine years. Anyway, Mark ran his grandpa all over the yard today. They can not get over how much energy he has. Since they never saw him sick, it is not really reality to them yet, that he is sick. Mark feels great. Although he has starting limping for about three days now. He does not appear to be in any pain. I called his oncologist and he said he did not see any reason to bring Mark into the hospital for a check up unless Mark seemed to be in pain. So, we will start the next round of Fenretinide tomorrow and Mark will go next Tuesday for a regular clinic check up. Thanks for all the prayers and support that everyone has shown us.
Friday, April 27, 2001 at 02:00 PM (CDT)
Mark continues to do well. He is really enjoying this beautiful weather we are having this week, and loves playing outside with his little brother, Brandon. Although I really have to watch him as he likes to climb the fence to go check what is happening in the neighborhood. Mark finished his third round of Fenretinide without any problems. Just chapped lips. He will start his fourth round in a couple of weeks.
Mark and Brandon will be going to Grandma's house tonight for the weekend and give mommy and daddy a well deserved break. We are getting the last details ready for the arrival of Mark and Brandon's grandparents next week.
Thank you again for all of the prayers that everyone has been sending. It really means so much to us to know that people from all over the world are thinking about us and praying for our family. I hope everyone has a wonderful weekend.....
Tuesday, April 24, 2001 at 10:20 PM (CDT)
After sitting and waiting three hours to see the doctors today, we found out that Mark's nose is fine. It is not broken. The doctors even seemed a little pleased that Mark has enough energy to cause injury to himself. Does that make sense? What I mean is that he is feeling good and just being a normal kid. As for Mark, he is feeling great and is back to his dare devil self again. Thanks for all of your support and prayers.
Monday, April 23, 2001 at 07:51 PM (CDT)
Just a little update on Mark... Life with him is never boing. He is always doing something crazy and trying to drive me into the nuthouse at a very young age. Well, tonight he almost did it. While running around the house, he ran smack right into a wall. He hit it face first. He was bleeding from his mouth and holding his nose. He has stopped bleeding and gone to sleep now. But his nose looks a little bent and he has a fat lip. Poor baby. I called his doctor and they want me to take him in the morning to be checked out and make sure that Mark did not dislocate his nose. So, for tonight I just have to keep an eye on him to make sure there is nothing else wrong with him. Isn't it nice to worry about regular childhood accidents??? It's a big change from worrying about cancer. I'll update tomorrow after our doctors visit. Thanks for visiting.
Wednesday, April 18, 2001 at 12:46 AM (CDT)
It's official. Mark's tumors are stable and have not grown or changed in two months. Of course, I am only talking about the tumors in his brain as he did not have scans of his whole body. But this is still encouraging. I have never seen Mark's oncologist actually smile. But today he came into the examine room beaming from ear to ear to deliver the news. Mark started back on the Fenretinide tonight. Geez, I've really missed thrying to get him to take 15 horse pills a day. Just kidding. We don't have to return to the hospital for a month as long as Mark continues to do well. Mark's doctor said that it is up to me if I would like to have scans done in a couple of months to see if the Neuroblastoma has spread any further. I guess I'll think about that one and let him know. Anyway, thanks for all the prayers and support. They are working.
Also, another thing. Mark's grandparents(abuelos) will be here in two more weeks from El Salvador. They were able to get a visa to come to the United States to see Mark. This will be wonderful for them to see Mark for the first time and I am so glad that he is feeling so well.
Monday, April 16, 2001 at 03:49 PM (CDT)
Today went quite well. Mark was not allowed to eat this morning because he had to be sedated for the MRI. He did a very good job at not complaining too much. The "unofficial results" are there is no change in the tumors in his brain. This is good news. But I will not know until tomorrow when we go to clinic if this is official. I seemed to get the results a little too quickly and that always makes me nervous. So, I will post tomorrow if we got the same news from our oncologist. Mark also got his Broviac out today. He will be allowed to take a bath in two days. YEAH!!! Mark loves the water, but has just flat out refused to get in the tub with that line in his chest. So, we are happy today!!! I hope everyone had a Happy Easter.
I also wanted to say thank you to Mark's Chemo Angels. (www.chemoangels.com) This is a wonderful organization that adopts a person who is going through chemo or treatment and sends them cards or gifts or something special in the mail. I wanted to let you all know that Mark received his things and loved them. Thank you so much. It means so much.
Thursday, April 12, 2001 at 10:31 PM (CDT)
I'm sorry that it has taken my so long to update, but things are pretty normal here. Mark is amazing. He has so much energy and has no idea what to do with it. I probably should not share this story, but I just want to to show you all what a crazy little boy he is. Today, I (Kelly) was cleaning the house while the boys were in the living room watching a movie. I was vacuming and suddenly I did not see Mark in the living room. I walked all around the house looking for him and checked out back in the fenced in yard. I didn't see him. Well, there was a knock on the door on the door. My neighbor across the street with Mark in her arms. I almost died. She said that she saw Mark walking around our front yard and wasn't sure if I knew he was out front. Oh My God!!! He had pushed the screen out of the window and jumped out. He acted like it was nothing. I felt like the worst mommy in the world. I can't take my eyes off of him for a second.
Thankfully, Mark and Brandon will be going to visit Grandma this weekend so I can get a much needed break. We are planning on taking some candy and other goodies up to the hospital to the kids and nurses.
We are having a MRI of Mark's brain on Monday. I hope it goes well. Depending on the results we will see if Mark can continue on the Fenretinide or not.
I want to wish everyone a Happy Easter and Happy Passover. Thanks for your prayers and support.
Tuesday, April 03, 2001 at 07:45 PM (CDT)
Hello, I have not posted recently because not much is going on in our lives. Mark did go to clinic today. First we met with the surgery clinic to discuss removing his broviac. The doctor would feel more comfortable removing it when Mark is asleep. So, it will be done after his MRI on April 16th. We also met with Dr. Dindorf, one of Mark's oncologist. She says that Mark looks awesome and that whatever we have been doing to continue doing it. When Mark has his MRI on the 16th, the doctors are going to be checking on the status of the tumors in his brain. If they have continued to grow or spread, he will discontinue the Fenretinide. If they are the same size or shrinking, Mark will continue on this experimental therapy.
Mark had a good week. He is continuing to sleep better at night. Although some nights are better than others. I guess he just likes to spend quality time with me at 2:30 in the morning. He is getting along a little better with Brandon, but they still have their moments. I think Brandon is finally learning to defend himself. We took the boys to see the circus this past weekend. Mark and Brandon both really enjoyed themselves. I hope Mark didn't get an ideas from the guys on the highwire, he was checking them out pretty closely.
All in all, it's been a very queit week. I will update more later. Thanks for checking in....
Monday, March 26, 2001 at 10:40 PM (CST)
Well, it's been another uneventful week for us here at home. I guess I should be thankful for that. Mark is feeling great. He is starting to sleep a little better at night. Although he kept Grandma up all hours of the night Saturday night. Mark and Brandon had a great time spending the weekend visiting Grandma and Pop-Pop. Mark finished up his second round of Fenretinide and is scheduled to go to clinic next Tuesday for a check-up. He will have a MRI on April 16th to check on his progress. Mark's hair is finally starting to grow back in. He looks like a little soldier. His eyebrows seemed to grow overnight. He went to bed one night without any and woke up in the morning with a unibrow. I promise I will try to get some updated pictures very soon on his website. I just bought a new scanner, but can't seem to figure out how to use it.
Oh, Mark is featured this month as one of the Hugs and Hope children. It is a website that is set up for sick children and people are able to send cards or gifts to the kids. You can check it out at www.hugsandhope.com
Again, thank you all for your thoughts, support, and prayers. We really could not have the strength to make it through this without all of your help. Thanks.
Tuesday, March 20, 2001 at 10:44 PM (CST)
Sorry I have not updated in a few days. But there is not really too much to tell. Mark is doing okay. He's been a little cranky the past few days, but he doesn't really appear to be in pain. He just wants a little extra attention and to be held. He is very jealous of Brandon also and it's not getting any better. Mark has been having a little trouble sleeping lately. He is sleeping, but doesn't seem to want to sleep for very long at night and not at all during the day. The doctors suggested I put him on Valium to help calm him down, but I really don't want to fill him up with drugs unless I think he really needs it. Mark started his second round of Fenretinide today and is taking it a lot better. For those who don't remember or haven't heard, Mark has to take 15 capsules a day for a week at a time. And you know what a good eater Mark is. Ha Ha!!!
We went to dinner at Grandma Harriet's house last night. Mark and Brandon had a wonderful time playing with the kids over there. They also loved the two cats. Although I think Mark was trying to pull one of their tails off. Not sure if we will be daring enough to get a pet just yet...
Mark and Brandon went up to Grandma and Pop-Pop's house tonight to spend the night. (Thanks Mom)I think she realized I was going crazy with the both of them. So, Mommy gets a little time tomorrow to do some things that she wants to do. Even though I can't think of anything better then spending the day watching Blue's Clues or Teletubbies!!! Just kidding. Uncle Nocky came up for a visit from Florida and is staying at Grandma's house. I hope the kids don't keep him up too late after driving up here last night.
Things are almost worked out to get Mark and Brandon's abuelos (grandparents) up here from El Salvador. Hopefully it won't be too much more longer before they are able to come.
Thanks for all the support and prayers. We love you all....
Kelly
Thursday, March 15, 2001 at 05:51 PM (CST)
Hello, well there is not much to update, but I guess that is a good thing. Things are going okay with Mark. He had a clinic visit on Tuesday and he has gained a pound in the past two weeks. He will be starting his second round of Fenretinide on Tuesday. Mark has a MRI scheduled for April 16th to see if the Fenretinide is helping control the growth of the tumors in his brain. We were not able to get Mark's broviac out on Tuesday and will have to wait another three weeks for the next available appointment.
Mark's younger brother, Brandon, is finally back home. He had been staying with Grandma while Mark was in treatment. What a change at home. Mark was happy to see Brandon for about five minutes. But all good things come to an end. Mark is used to being the king of the castle and now he has to share the spotlight once again. He is not taking it too well. And is trying to show Brandon who is boss. I don't think Brandon realizes yet that he is about an inch taller and ten pounds heavier than Mark.
On another note, I am in the process of trying to get Jorge's parents a visa to come here. They are Mark's paternal grandparents that live in El Salvador. They have never had the chance to meet Mark or Brandon. They only know the kids through pictures that I send them. I think it is very important that they get a chance to be able to see Mark while he is still feeling well. Thank you for your support and prayers.
Thursday, March 15, 2001 at 04:17 PM (CST)
Hello, well not too much to update. We went to clinic on Tuesday and the doctors say that Mark is doing great. He managed to gain about a pound in the past two weeks thanks to starting him on Scandi Shakes. He will start his next round of Fenretinide next Tuesday. Mark will have a MRI on April 16th to see if the new drug is helping at all. We missed our appointment for the surgery clinic to get Mark's broviac removed. He seems to want to party at night, so appointments first thing in the morning don't work out too well. Oh well, I guess we have to wait three more weeks to get the line out.
Brandon, Mark's younger brother is back home with us. He had been staying with Grandma while Mark was in treatment. It had been wonderful for mommy and daddy to see Brandon. But Mark is not taking the split attention too well. He is used to being the king of the castle and now he has to share the spotlight. He enjoyed Brandon the first five minutes he was home. Then he started beating him up. I don't think that Brandon realizes that he is about an inch taller and ten pounds heavier than Mark and can defend himself. Hopefully they will start to get along soon.
On another note, we are in the process of trying to get visas for Jorge's parents to come up and see Mark. They are Mark's paternal grandparents and live in El Salvador. They only know Mark through pictures. So, they really want to get a chance to see Mark while he is still feeling good. I hope it works out.
Thanks for all the thoughts and prayers.
Monday, March 12, 2001 at 02:48 PM (CST)
First of all, I just want to let everyone know that Mark continues to do well. He actually had me up last night until 5a.m. singing and dancing. He is such a ham.
Our trip to Disney World was fabulous. Mark had such a great time and enjoyed himself. We stayed at Give Kids the World Village. They really treat the kids so special. One thing that was very nice about our trip, was that we got the chance to meet a family from Israel, who has a son with Neuroblastoma also. His name is Dror and he was such a cutie. I will try to get some pictures from our trip up in the next few days.
Mark has to go tomorrow for a clinic check-up. He actually has two appointments. The first one will be with the surgery clinic to see about getting his broviac removed. Then he will see Dr. Perez, his oncologist. Thank you everyone for your support , thoughts, and prayers.
Sunday, March 04, 2001 at 07:22 PM (CST)
Well, if all goes well we are leaving for Disney World in the morning. Yeah!!! I haven't even started packing yet. Mark is feeling great and even managed to give his little brother a black eye this weekend dragging a wagon overtop of him. He is almost finished finished with his first round of Fenretinide. All went well. I wasn't sure I was going to be able to get 15 pills into him a day. But we have somehow managed. The only side effect that I can see is chapped lips. I will update more when we return. And I will make sure to put some pictures up from our trip. Oh, I almost forgot. Mark has an appointment for next Tuesday to have the surgeons look at him and see when we can get his broviac out. I can't wait. He refuses to take a bath when it is in and I am tired of sponge baths. Have a good week.
Kelly
Thursday, March 01, 2001 at 07:57 PM (CST)
I don't really have much to update on Mark. He is still feeling great. I'd like to know where it is that he gets all of his energy from though. We went to visit Grandma at work today. That was so much fun. And Mark even got his very own hard hat. He looks so cute. The Make-A-Wish people came back out to the house today. They brought more toys for Mark and gave us all of our travel arrangements for next week. A limo will be at our house at 5:30 in the morning on Monday to take us to the airport. Well, I guess that's about it. I'll update more later. Thanks for all of your prayers and support.
Tuesday, February 27, 2001 at 08:07 PM (CST)
Hello, well after a few problems at the hospital today we were finally able to get Mark his Fenretinide. I'm not quite sure how we are going to get him to take it though. He needs to swallow 7 capsules in the morning and another eight at night. Mark will take the Fenretinide one week on, two weeks off. We've been told that there are not too many side effects other than dry lips and skin. So, I guess I better stock up on Vaseline. I talked to Make-A-Wish today and we are definitely leaving on Monday for Disney World. Thanks for all of your prayers.
Monday, February 26, 2001 at 02:44 PM (CST)
I have set up this website to help keep our friends and family updated on how Mark is doing. Mark is a three year old little boy who was diagnosed with Neuroblastoma IV in January of 1999. He went through five rounds of aggressive chemotherapy, surgery to remove the tumor at his primary site, 12 days of local radiation to his stomach and six months of Accutane. He had check ups every three months to follow up to make sure the cancer had not returned. In November of 2000 after showing no evidence of disease for 18 months, a tumor was found in his brain, one on his ribs, and his marrow was packed with NB cells. Mark underwent surgery to remove the tumor from his brain, and was started immediately on chemo again. After one round of chemo his marrow was checked and there was almost no NB cells. He had a stem cell harvest to collect stem cells to prepare for a stem cell transplant. After his second round of chemo, we did scans to prepare for transplant. Two new tumors were found in Mark's brain. So, transplant was cancelled and we are going to be starting on a new drug, Fenretinide in the next few days. Hopefully this drug will give us some more quality time with Mark without the side effects that the chemo had on him. Right now though, Mark is a happy, energetic, little three year old who is driving all of us crazy. But in a good way!!! We are planning on leaving next week for a trip to Disney World thanks to Make-A-Wish Foundation. I think it will be a nice trip to make many memories and to let Mark have the chance to have a blast. Thank you for all of your thoughts and prayers. We couldn't make it through this time without the help of everyone. Thank you.
Thursday, March 30, 2000 at 10:46 AM (CST)
Well, it's been seven months now since Mark has been in the hospital. Sometimes it seems like just yesterday and other days it feels like it was years ago. Looking at Mark you would never believe he had been so sick. We just pray everyday that this horrible disease never returns. And that one day soon the doctors find a cure for it so that no more children have to suffer like ours have. Mark is doing extremely well. He is very active, has a full head of hair, and has more energy than me. His blood counts are normal and all of his scans last month were negative for Neuroblastoma.
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