It's been five years since Marky's birth. I thank God today for bringing
Marky to us even if it was only for a short time. He has been such an amazing son. He has taught me more
than I could have ever imagined. He's definitely taught me different things than he would have if we were having
his birthday party here today and I really miss being taught those things....
Today Mary Cate celebrates her first
Holy Communion. It seems an appropriate celebration of faith and family. Mark and I took sometime together yesterday
to celebrate our boy and today we will have a 5 year celebration cake for Marky along with Mary Cate's cake.
We will again be holding the Second Chance Foundation Golf Tournament on June 22nd at Red Rock Country Club in honor of
Baby Mark, Jr. I hope and pray that even in these tough times we are able to fill the field and have a great tournament.
I'm sure tansplant patients and their families need more help than ever due to the current economic climate.
I love you Marky, I miss you and I wish I could squeeze you and tell you Happy Birthday!
It is so hard to believe that Marky would have been four years old today! It just doesn't
seem as if that much time has passed since that Mother's Day morning in 2004. I try to imagine what we would
be doing with him and what activities he'd be involved in.... his cousin Kate was born two months before him so when we
see her we get a glimpse of where he would be if he were here.
Mary Cate has finally learned about the cemetary.
When we visited Hawaii in January our first room had a view of a little Hawaiian cemetary and I just knew the question was
coming. Fortuneately, Mark was there to answer because he did an amazing job of answering her questions and explaining
all about it. I knew that she thought Marky was in heaven body and soul and we were waiting for the right time
to talk to her about it. Hawaii actually was the perfect time because we were all together with plenty of time to talk
and listen without having the distractions and the day to day rush of being home. She brought it up many times during
our trip and still does today when something pops into her head. I think we're going to take her to the cemetary
for the first time this weekend.
I wish I could say that things were better on the organ donation front four years
later. The waiting list continues to grow, as of today it's 99,254 men, women and CHILDREN waiting for a gift of
life. Four years ago that number was in the 80,000's if I remember correctly. When Marky died, 17 people died
every day waiting, that number is now quoted at 19 people per day. There have been some positive changes proposed for
how organs are allocated to young children. These changes were actually proposed by one of Marky's doctors and we
were thrilled to see them. It should make the system work better for the sickest children.
to be the President of the Second Chance Foundation. We have both spoken at an UNOS regional meeting. I'm
speaking this weekend at a women's breakfast about my little guy and his message about the gift of life. I know
it's the right thing to do but it's days like today that I especially wish things had been different four years ago....
I wish, oh how I wish I would have delivered a healthy little boy. He was such a sweet soul and so happy.
He brought so much joy into our lives. We love him so much and miss him so much.
Happy 4th Birthday Marky!
Marky died 3 years ago today. I must say that this anniversary of his
death was much more difficult than I had anticipated. I'm trying to figure out why.... and the only thing I can
think of is that to get to the point where I am able to live a new normal I just don't focus on his death as much
during the year. Marky kind of "lives" in our family as a part of the family that we just don't ever physically
see except for his photos. So focusing on his death really reminds me that he's gone and it brings back all of the
Gracie even knows who her brother is and says baby Marky when she sees his picture. Out of the
blue she'll say baby Marky and it makes me feel like she can see him or something, then I realize that
we just walked by his photo. Mary Cate talks about her brother all the time and I'm really happy about that. I
remember speaking with someone who said that their mother had a child who died before they were born and it broke my heart
because they referred to the child not as their brother or sister but as their mother's child. I want the kids to
know their brother and for him to continue to be a part of our family.
Mark and I spoke last week at
a United Nework of Organ Sharing (UNOS) Region 5 meeting to mostly people that work for organ procurement organizations (OPO's).
UNOS is "the list" and OPO's are the organizations that are responsible for asking families to donate their
loved one's organs. We sat through about 30 minutes of their meeting and then we gave our talk. What was really
depressing and great at the same time. It was one of their charts on the powerpoint that showed organ doantions
by month for the past four years. What was depressing was that organ donations are at the lowest each December which
was when Marky needed his transplant.... what was really exciting was that organ donation has increased each year in the past
four years. What was even more exciting was to see the work the group is doing and the focused effort they have on increasing
donation. It was a very difficult talk to give. These people have probably heard and lived many, many transplant
stories and I really wanted our talk to be meaningful. It was especially hard for me to get through it and I think that
I just need to realized that December is a hard month for me. If they heard anything that day, I hope they heard me
say that "I wasn't praying for another child to die so that my child could receive an organ, I was praying that another
parent would say yes when faced with the decision." I don't know why I think that statement is important but
it took me a while to make peace with my prayers when Marky was alive and that's finally where I ended up.
I miss you, I love you and I wish I could chase you around the house!
was strange today, I did a lot of thinking about Marky and how things would be if he were here with us. I sang to him
and told his little sister about him. I'm thinking about him a lot lately. I think it's because it's
mid-October which is the time I call the "beginning of the end". It was in October of 2004 that Marky became
very sick and was hospitalized in Las Vegas and then airlifted to UCLA. We had no idea what was ahead of us and we had
no thought of him dying.
I hadn't noticed that posting from July when someone asked why Marky's grave had
not been marked with a headstone. Well, it's because deciding what we wanted and what we should say and all the
details of the headstone were very overwhelming to me. It was almost like the last thing I'd ever do for my son
and I wanted it to be perfect. I didn't want it to be ordinary, I wanted it to be artistic and beautiful.
I know the headstone means nothing to him, but it was VERY important to me and I wanted it to be perfect. We actually
found a company in TN to design it as my first attempt to have it done at Palm was a disaster. Unfortunately, it's
still not perfect as it has two typos..... I couldn't believe it, typos on a headstone. We're working to have
them corrected and hopefully they will be soon. So, that's the story of why it took so long to get the headstone.
Happy Birthday Marky! He would have been three today..... wow it's
hard to believe that he'd be walking, talking, taking swimming lessons, getting ready to go to preschool in the fall.
I miss my little man so much.
We looked at videos of Marky for the first time over the weekend. It was good
to see him and hard to see him at the same time. Looking back at them it's easy to see that he was very sick and
there were days when he just didn't look good but he also had days when he looked just like any other little boy.
Mary Cate actually asked where his tubes where in part of the videos. Of course we don't have nearly as many videos
as we thought we had or we'd like to have. We NEVER thought that our little boy would die, really we didn't,
not until that very last day in December did we face the reality that he wasn't going to get the precious organs that
This year we told Mary Cate that it's Marky's birthday. We're having a cake for him
which she has decorated like she did on his monthly birthdays we had for him and we're sending him balloons. She
asked me what his favorite thing was and I told her binkies so she's going to draw a cake on one balloon and a binkie
on the other. She's amazing.... she often tells me that "Mary the Mother of God" is taking care of Marky
in heaven. I sure hope she's right.
I wish I could say that things have improved on the organ donation
front over the past three years. It's frustrating that the shortage of organs is only getting bigger. I pray
that things will change. I wish I could find a way to make a big difference to honor Marky.
to work with the Second Chance Foundation, (Mark Sr. is the president of the organization), to help transplant patients.
We're having the 3rd annual Baby Mark Jr. golf tournament to raise money for the cause. I'm still raising money
through the bracelet project and will soon be making a donation to the new pediatric intensive care at UCLA. I continue
with the web site in hopes of helping other families who have similar situations. I do hear from people every few months
so I feel that it's helping in some way.
I miss my baby boy so much that it hurts. I just want to hold
Tomorrow night we'll mark the 2nd anniversary
of Marky's death. I am really amazed that it's been two years....... I feel like we've lost a few years
of our lives. I am happy to say that we're finding a new normal for our family. We had heard from other parents
that the second year after their child's death was harder than the first. I think I'd agree with that.
The first year you're in a fog and running on adrenalin. The second year the reality of it hits you and the adrenalin
is gone. No one has told us what the third year brings, but I think that it will bring us to our new normal and we will
start to focus on the happy times with Marky both at the hospital and at home. We did have many happy times, he was
a great baby and we loved and still love him very much. Marky will be a part of our everyday family in a matter of fact
way rather than in a sad way (if that makes sense). We're not there yet, but I think we can be and I hope we can
My Christmas wish this year is that some family out there who, like we did two years ago, desperately needs
an organ will get it. I pray that the new year will bring better education and understanding about the need for organ
donation and the never ending number of names on the list will begin to go down instead of up.
Watch the Rose Parade
on January 1st and look for the Donate Life float. We've dedicated roses on the float for Marky, Tina & Aiden
Quigley and Aylcia Levy & her family. I've always loved that parade!
Last night we had the second annual Second Chance Foundation Roast. It was a great success thanks
to all of the great committee members, staff, volunteers and attendees. It's hard to believe that we're closing
in on two years since Marky died.
Today Grace is 7 months old and she's doing great. Marky only lived
to 7 1/2 months so it really feels strange........ I know that God really does take care of us. Marky's 7 1/2 months
felt like they lasted much longer than the past 7 months of Gracie's life.... I am SO thankful for that. Even though
we only had him here for a short time it really felt like it was a VERY long time when I think back on it.
the fall will forever be different for me. Marky went into the hospital for the last time in mid-October, we had Halloween,
Thanksgiving, my birthday and almost made it to Christmas. So it feels heavier to me this time of year, I'm not
sure if that makes sense but that's how I'd describe it. As much as we're getting to our new normal, we
still have a long way to go. I finally copied this journal to a file that I'll be able to read in the future.
I'm afraid to go back read it now, I haven't been able to since Marky died, but I know that some day I will be able
to and I'll be glad that I have it.
We miss you Marky and we will love you forever and ever.
Much has happened over the past four months............. it seems that it's harder for me to share in my journal.
I don't know why, I always want to update but then I don't do it and now it's been four months. Some have told us that
the second year after the death of your child can be more difficult than the first. I don't necessarily believe that
but it is definitely different in the second year.
Marking the anniversary of Marky's death on December 22nd was not as hard as I had imagined it might be. I re-live
that day so often in my head that don't think I could re-live it any more vividly or completely and thankfully on the 22nd
I didn't go through an hour by hour reenactment. I find that holidays are the most difficult thing. Christmas
was very hard again this year...... I just imagined my little 19 month old toddling around the Christmas tree and all
the fun he and his big sister would have had. There is definitely someone missing from our celebrations, there is a
hole in our family that can never be filled.
As the new year began I found it more difficult to get things done, return calls, emails and reach out to others.
This is what I've found is different about the second year.... It was almost as if Mark and I were running on fumes
in the first year, getting everything done, being involved in our support group and organ donation awareness and then
we both kind of hit the wall once we reached the first anniversary of Marky's death. We are forcing ourselves to stay
involved and know that these feeling will pass. Our grief will never leave us......but it will always be changing.
On April 12th at 5:54 p.m. Marky became a big brother! Grace Elizabeth joined our family and looks a lot like her
big brother. She was very small but very healthy and a gift from God. Mary Cate is thrilled to have a little sister
and was very happy that she came home from the hospital right away. During my pregnancy she asked how long the baby
would be in the hospital and how long she would be with us before she went to heaven. Since Grace has come home, I haven't
had any questions about how long she's staying so hopefully Mary Cate is feeling more secure that her sister is around for
keeps. I STAND CORRECTED! Tonight at dinner Mary Cate said "remember
that big black car that we took to church?" I thought I knew what she was talking about but I said "I thought it was
white". She said, "no Mom, it was black, the one that we took to church when Baby Marky died and we're going to take
the same one when Baby Sissy dies." As time passes I'm sure she will become more secure that her sister isn't going
anywhere........... I'll pray for that.
Grace's birth has made me miss Marky even more...... I'm sure he kissed her goodbye when she came to be with us here.
I know that during her first 7 1/2 months I will be making lots of comparisions to her big brother. Oh how I wish he
were here with us!
Time is going by very quickly and I'm not sure how it gets to be over a month since I update. I'm always thinking
of things to "say" but just don't make it to the website.
Last Sunday night was a special night for us. We coordinated the Compassionate Friends Worldwide Candle Lighting
here in Las Vegas. It was a really nice event and we had a great turn out. Compassionate Friends is the support
group that Mark & I joined. It helps parents of children who have died. We had two news outlets there.
The Fox 5 coverage is on their website:
If you click on the red camera icon to the left of the story, you can see the whole news report.
I can't believe that next week it will be a year since Marky died. Today on the way to school Mary Cate said
she saw Marky and that he really wanted to come home to his Mommy. Oh, I so wish that that were true! We miss
him so much and are really feeling his death this week.
I've realized that I don't really like Halloween anymore....... the goulishness of it really bothers me. On Halloween
I wanted to take a balloon to the cemetary but the only balloons I could find had skeletons or ghosts on them and they just
didn't seem like the right think to take to the cemetary. I then beat myself up because I didn't even go to the cemetary
on Halloween.... then I realized that Marky doesn't care about Halloween. The roller coaster ride continues and I think
about Marky even more now than I did a few months ago.
Mary Cate has a new plan..... a few days ago she asked me to buy "air for balloons" her way to say hellium. She
had written Marky some notes and wanted to send them to him. The next day she said she had decided to tape the
note on the balloon instead of putting it inside because Marky wouldn't be able to open the knot on the balloon. She
was thrilled when I bought a tank yesterday and today we sent our first balloon aloft. She took it outside and then
said to the sky "Marky you are the best brother ever". She watched it until it was gone and told me that Marky had grabbed
the string and he was holding onto it. So if you notice lots of balloons coming from our house you'll know that Mary
Cate is very busy sending notes to heaven.
Marky went to heaven 9 months ago last night..... and he is still making a difference. I am so glad that
people continue to find his site and are moved to become organ donors because of it. Just today his web address was
in the Washington Post newspaper. The article focused on using web sites to gain awareness for organ donations and solicit
organ donors. Many of the ethicists are against the use of the web to gain awareness and make solicitations. Mark
and I will be on a panel next month discussing the issue from the "pro" position for awareness.
It makes me crazy when I read the articles..... like the one today in the Post.... People (that's men, women
AND children) die every day because there are not enough organs donated and we have a solution to the problem! It's
not like a terrible disease without a cure, WE HAVE A CURE. The cure is to change people's mindset when it comes to
organ donation, that's it, that's what we need to do, but why can't we seem to do it?
When Marky was first listed on the UNOS list there were about 87,000 people waiting for transplants. Now, 13
months later, the list is up to 89,587. During that time people have received transplants and an estimated 7,000 have
died but the number keeps going up and up. I'm wondering when the public will notice this problem and something will
be done about it.
I believe a campaign needs to be created to show those who have died waiting. Perhaps that will move people
to think about organ donation and consider becoming donors. The current campaign shows transplant patients who are leading
successful and happy lives because of their transplant..... Although it's wonderful that they received their transplants
and they are doing well, I don't think it calls anyone to action. I thought that was the purpose of ad campaigns.
I wish I knew of a way to get more attention for this cause in a big way.
Wow, I can't believe it's been so long since I've made a journal entry..... I think it's maybe because I really want
to be positive but I'm having a hard time with that right now. I thought that after getting through Marky's first birthday
and all of the emotions surrounding it, I would be feeling much better that that was the worst of it and it would be uphill
from there. Now we're starting the anniversary of many events in our life with Marky and the memories are sometimes
Last August 25th we woke up to find Marky on the front page of the Las Vegas Review Journal. A huge photo of
our sweet boy, above the fold, with the headline "I Need An Organ Donor". Shortly before the article my sister created
this website and that's how Marky got on the front page of the paper. I think what is so painful for me is my naivety,
my hope.... just never once thinking that Marky would die. I know that may sound strange but that's where I am right
now. I know I could go back in this journal and see how strong and positive I was a year ago but I can't read it now,
someday I will.
As we progress through the fall every day I'm scared of the memories and reliving all of the events. I'm
really trying not to do it.... I hope I don't. What I'm trying to focus on is that September was about the very best
month we had at home with Marky. Mark Sr. and I were more comfortable with his medical care, we had a plan and
Marky was doing a lot of laughing and having fun with his sisters.
Mary Cate still comes up with those amazing statements........ this week's was "Mom, you should have had Marky stay
with me in my room" when I asked her why she said "because I would have held him VERY tightly and not let the angels take
him away." I couldn't really respond to that one.... now that I've had time to think about it I can think of lots of things
that I could have said, next time I will.
Happy Birthday Mary Cate! She's four years old today and it's hard for me to believe it. It's days like
today that I really miss Marky. This morning Mary Cate came into our room and got in bed with us, it was nice, just
the three of us....but I so wish it could be the four of us.
We spent the day at my moms house in the pool. At one point Mary Cate and I were playing "volleyball"
(using the term very loosely) and Mary started looking at the sky, talking to Marky and asking him for help. I have
a feeling that she'll be doing that for the rest of her life. He is her special angle in heaven.
I'm usually not at a loss for words but I have been, on this issue anyway, for the past two months. Friends
of ours, the Dodds, gave me such an amazing gift for Mothers Day that it's left me speechless. They re-wrote a song
and their daughter Traci recorded it for me. It's a variation of the song "Mary Did You Know?" It goes like this:
Sara, did you know
That your baby boy would smile and coo so sweetly?
Sara, did you know
That your baby boy would steal your heart completely?
Did you know
That your baby boy would leave us all too soon?
But that his still, small voice could change our hearts
About life donation?
Sara, did you know
That by seven months he'd need so many prayers?
Sara, did you know
That he would not live but others have a chance
Did you know
That your baby boy could make us all believe
That we could change our hears and make a difference
By giving of ourselves?
Oh, Sara, did you know?
Sara, did you know?
We heard his voice
He changed our hearts
And we would spread the word.
Others still can live
If we will only give
The gift of renewed life.
Sara, did you know
That your baby boy, his time would be so brief here?
Sara, did you know
That his humble voice would impact us so greatly?
Did you know
He's with Jesus now and though your heart is aching
His story will be told.
He wants us to be bold.
Oh, Sara did you know?
Oh, Sara did you know?
Thanks so much to Tommy, Teri and Traci for being there for me and our whole family...... what else can I say?
Happy Birthday Doc! Today is Marky's uncle's birthday.
Great news........Aiden Quigley received his transplant last Friday, July 8th at LA Childrens Hospital.
He received a portion of his mothers liver and both mom and Aiden are doing just great. What an amazing gift to give
your son.... just wait until he's 16 an giving her a hard time!
The family will be in Los Angeles for a while. The good news is that since the liver came from his mother,
rejection problems may be less than with another transplant. Let's all pray for that and their speedy return home to
Here are some updates on our friends:
Little Natalie Morales ( www.babynataliemorales ) flew to heaven on Wednesday, June 29th. She was just 6 months old. Her mom was planning on donating part of
her small intestine to Natalie, but Natalie became too sick before she could get big enough for the operation.
Alycia Levy's graft (transplanted small intestine) is not doing well. Her parents have quit counting how many
weeks she's been in the hospital....I think it's about 16 weeks now. The doctors may need to "explant" or remove the
graft and place her back on the list for a new small intestine. This little 5 year old and her parents are fighting
very hard to avoid that.
Aiden's parents are looking at many options this week........
Please keep all of these families in your prayers.
Oh, these poor kids and their families............they need our prayers so badly. Aiden is back in the hospital
and not doing well. His parents are looking at other medical centers that may allow his mother to give him part
of her liver. UCLA felt the operation too risky due to they way his mom's liver is structured but another center is
not agreeing. What a decision to make..... do we move forward with what may be a risk but a certain transplant or do
we wait for what may be safer situation but unknown if it will ever come.
Also, baby Natalie is not doing well at all. Her heart stopped last night and her lungs are bleeding.
Marky's heart never stopped but what finally took him was his lungs filling with blood. She is just six months old,
Marky was seven and a half.
Please say prayers for these families and especially these little children. I miss Marky so much.......it just
hits me like a ton of bricks sometimes.
We had a quiet Father's Day this year, not like last year. Last year, Marky had been home from the hospital
only about two weeks and on Father's Day his G-Tube fell out. Mark and I reminisced about it this year.... We were both
so scared, so worried, paged all of his doctors and rushed him to the ER. At the time we had no idea that in a matter
of months we'd be taking the thing out on a regular basis and it was really not a big deal. We learned so much in such
a short time, each new event brought new education; I only wish we could have known everything right away. Perhaps we
would have made different choices.
Aiden Quigley has been in and out of the hospital since my last post. Now he is dealing with bleeding issues.
His parents are looking to other centers for other options. I hope you'll all continue to pray for them, especiall this
Friday, June 24th as they celebrate Aiden's 2nd birthday.
The golf tournament was a great success! We raised over $40,000 for the Second Chance Foundation. We
are very thankful to all of our sponsors and our volunteers for making it such a great day. I was doing well all day
until Mark Sr. got up to start the program and said "We want to thank you for coming to the 1st annual Baby Mark Jr. Memorial
Golf Tournament. At that point I just wanted to break down and run out..... I knew I couldnt' as the room was filled
mostly with men some of whom probably really didn't know what the event was all about or that our son had died not too long
ago. So I held back and made it through. It feels good to do good and I think it honors Marky and his life.
Now we need lots of prayers for some kids and parents:
Aiden Quigley is almost 2 and needs a liver. He just spent a week in the hospital here in
Las Vegas with infection and he really needs a new liver. Please pray for him and for his parents and sister.
Alycia Levy is 5 years old. She received her small intestine transplant at Georgetown University
Medical Center in November. She has been in the hospital for the past 10 weeks battling infection, rejection and serious
pain issues. Please pray for Alycia, her parents and sister. If you can visit her web site at www.caringbridge.org/md/alycia and leave a message of encouragement, I know they would really appreciate it.
Natalie Morales is 6 months old. She was born the day before Marky died and needs a small
intestine and liver transplant. She is having lots of issues right now and needs a transplant soon. If you can
visit her web site at www.babynataliemorales.com and let them know you're praying for her, I know they would really appreciate it.
Lastly, Mark and I are involved in a group called Compassionate Friends. It's a support group for parents whose
children have died. It's a very small group (I'm not sure whey because there are a lot of parents out there who could
use it). We met last night and several of our members just don't want to go on living without their children and that
breaks my heart. Although I can appreciate their pain and understand their feelings, I am not feeling the same as they
are and I wish I could give them some peace. Please say a prayer for them too.
I'm so excited about the golf tournament..... it's a week from Monday on the 13th and it looks like it's going to
be a huge success. So far we have 122 golfers (out of 144 max) which everyone is telling us it great for your first
Okay, let me back up..... It's the Second Chance Foundation's Baby Mark Jr. Memorial Golf Tournament at Rio Secco
Golf Club. Right now we're probably going to make about $35,000 for the cause. This is the Second Chance Foundation's
first major fund raising event so that makes us even more excited that it's been so well received.
We are so thankful to everyone who has so generously supported the tournament. It's really great to be able
to focus my energy on something that is so positive.
It's funny, Mark and I were talking earlier in the week..... a little more than a year ago we both wanted to be more
involved with charities and give back not only monitarily but with our time and talents. For myself, I just didn't know
how to get involved and for both of us the big question was finding the time to do it. What a difference a year makes.
Right now we're on the brink of a very successful golf tournament that our committee has learned to put together as we go
along. I know it's going to be a great day, a big boost for Second Chance Foundation and a great tribute to our
Wow, I can't believe it's been so long since I've written in this journal....... I've been feeling much stronger
and was even considering wearing makeup again (I figure why put it on when I end up crying it off at some point during the
day) and then I had this conversation with Mary Cate this morning....
“How did Marky die Mom?” His liver failed, I answered. “Was
he all by himself and he went up to heaven?” No honey, Mommy and Daddy
were with him, I replied. “Oh, so you took him there and then came back?” No he went by himself. “Why did
he go by himself?” Well, um, because that’s how it works, I said……..
“Oh, did the angels come and get him?” Yes, I said thankful that
she came up with a better answer than I did. The nice angels came and took him
to heaven. “Oh, she said, then he wasn’t scared!”
Then she went to the piano and made
up this song:
Marky was a good boy.
And he is alright.
And he loves me.
And he even does.
He was a special boy.
He’s a special boy.
And he loved me so much!
I haven't cried
that much since his birthday. She is such an amazing little girl. I'm amazed too that she's concerned for HIM
and how he was feeling at the time. Three year olds spend so much time thinking of themselves that it's great to
see this side of her.
|Marky's 4 month birthday, 9/9/04
Today would have been Marky's first birthday. I can just see him toddling towards me with those beautiful eyes
and great big smile. We did have 7 birthday parties for Marky and I'm so glad that we did. Each month on the 9th
we'd have a cake which Mary Cate usually made, put on party hats and sing Happy Birthday. I think Mark Sr. thought I
was a little crazy at first but I think he grew to enjoy our monthly birthday parties for Marky. I'm not sure Marky
thought it was a lot of fun putting the hat on though........ I really think that I started doing it to prove that we knew
Marky's life might be short, probably prove it to myself because I know I never believed that it might be.
We went to church on Saturday. I don't know what it is about church but it's always difficult for me.
It's either a reading the the homily or the baby we happen to be sitting next to. This time there was a little 5 or
6 month old boy several rows down in front, he reminded me a lot of Marky. He was very happy and expressive. I
saw that Mary Cate noticed him and all of a sudden, she started crying like she'd fallen down or smashed her fingers.
She said, "I miss my brother". It broke my heart. We haven't told her that today is Marky's birthday, it would
be to confusing for her I think. But it's amazing how sensitive she is and how much she notices everything.
I feel that it's time to make some changes now. This anniversary of Marky's birth feels like an ending point
for some things and a starting point for others. It's REALLY scary to write that as I'm not sure I'm ready or strong
enough yet to live up to it. During the past week, I've spent sometime in our office at home. It has been a complete
mess since Marky and I left for UCLA last October. Since I've been home I've avoided cleaning it and I think I've realized
that it was because I didn't know what I'd find. Last Friday I tackled it and I finally put away all of Marky's Christmas
presents and found all of the hospital id bands, dirty binkies, notes and journals I had written in LA. It's probably
gross, but I can't throw away or wash dirty binkies. Just like everything else, I want to save every little connection
to or tiny scrap of Marky that remains.
Thank you God for bringing Marky into our lives. Thank you for letting him touch so many people. Thank
you for giving me a beautiful son who has changed my life so much.
I love you Marky!
Wow, it's May already......I just can't believe that a week from now one year ago was one of the very best and very
worst of my life. Marky was born on Mother's Day, May 9, 2004. When my water broke at 1 am on Mother's Day I was
excited and anxious about Marky's arrival. I thought, what a nice thoughtful boy that he'd decided to arrive as a very
special Mother's Day gift.
The excitement changed to fear when at 5:05am Marky was born via c-section and I heard no cry. We could NEVER
have imagined what was ahead of us in the next days, weeks and months. The very next day when the surgeon discovered
that Marky's small intestine had withered away because the blood supply was gone Mark Sr. and I had to make the decision that
no parent should have to make..... should we make the "heroic effort", as the doctors put it, to save Marky and move forward
and wait for a transplant or should we let him go to God. Mark Sr. was with Marky and the surgeon at Valley Hospital
and I was at the other hospital when the call came with the news. I will never forget that moment for as long as I live.
For us, it wasn't a decision to make....we knew that we had to move forward.
In retrospect we were VERY naive. We knew nothing about transplants and how very difficult it is to actually
get a transplant. I know that I absolutely thought that if we did everything right and took very good care of our boy
that everything would work out, there was no question about that. So Mark Sr. and I pushed forward and with the help
of very supportive family and friends we did take very good care of our boy.
I just can't believe that twice in 2004, Mark Sr. and I had to make such a horrible decision.......on December 22nd
when the doctors told us that Marky's system was shutting down and he wasn't going to make it. We had to decide if we
wanted to keep him going with machines and drugs for a few more hours or a few more days or should we let him go as he wanted
to. Again, for us, it wasn't really a decision to make. We didn't want Marky to suffer and if God was calling
him home then we needed to let him go go, no matter how much we were going to miss him. On both occasions I have to
say that Mark Sr. and I were just so together on these decisions that we already knew what the other was thinking. I
am so thankful for that.
December 22nd was the absolute worst day of my life and I hope that it remains the worst..... I can't imagine having
to go through anything worse than that in my life.
I've learned in the past year that God's plan is not necessarily MY plan. That's a very hard thing to learn
especially for a person who is a planner like I am.......... I know that one day we will understand why Marky had to die,
but I already know why he lived for those 7 1/2 months.
I usually don't ask for anything for myself........ but please keep our family in your prayers this week. Mother's
Day this Sunday and the anniversary of Marky's birth on Monday are going to be very difficult days for us. We are so
very thankful that Mark was born, made it through birth and lived for 7 1/2 months. We are also so very sad that he's
not here for his first birthday and all those that would have come after it. We don't cry for Marky, we cry for ourselves
and our family who is missing out on getting to know such an amazing little boy.
Happy Birthday! Happy Birthday! Today Marky's big sister Sarah turns 18 and Marky's Grandmother Bea Ricciardi
is also celebrating her birthday.
Please pray for Todd Krampitz and his family. Todd flew to heaven last Wednesday. He was the inspiration
that started this website. My sister Lisa saw him on Good Morning America. After seeing Todd talk about his quest
to find himself a liver, Lisa came home and created this website for Marky. I'll never be able to thank her for what
she did. By creating this website Marky was (and still is) able to touch so many people with his message. I still
get emails from people letting me know that they hadn't thought about organ donation and children and that Marky's story has
changed their opinion. This website has also been such a source of support for Mark Sr. and I. It has been just
Todd's site ( www.toddneedsaliver.com ) created quite a stir in the transplant community and because of that controversy Marky ended up on the front page of our
local paper because of this website. And because he was on the front page of the paper we met the people with the Second
Chance Foundation and became involved with them. Without Todd's inspiration and my sister's amazing gift,
our journey would have been very different. I know that God had a hand in making all of these things happen, I am so
thankful that He did.
Tonight I decided that I could read Maria Shriver's book about Heaven to Mary Cate. I hadn't picked it up since
January but thought that I was ready again to read it to her. She asks a lot about heaven and I struggle to find answers.
Well, I didn't make it very far and the tears started to flow. She was okay with it and then after some time said, "Mommy,
why are you so sad?" I told her that the story made me think of Baby Marky and I miss him so much. She replied,
"Mommy, when you miss your baby so much you need to cry VERY loudly." So I guess I should put an extra $110.00 in her
college fund this week for the therapy session.... I'll read the book to her again and at some point I'll be able to
make it through all the way. It just will take some time.
Please say a prayer for little Morgan. She flew to heaven last Sunday, 4/10. She was born 7/23/04 and
was waiting for a small intestine and liver transplant. You can visit her website at www.caringbridge.org/nc/morgan. That's three little ones in a year that have become angels while waiting for the same transplant. I wish there
were some other way to save them, some other way to keep their livers from failing so fast.
Please also pray for those who have received their transplants. It's not an easy road for them. Alycia
is a 5 year old who received her small intestine transplant in November. She's been in and out of the hospital and is
once again in. Her mother Stephanie does an amazing job of keeping it all together but I know it's not easy to
have half of your family in the hospital and the other half at home.
I was looking at pictures of Marky from November and December..... it's amazing how I was able to fool myself that
he was sick but not too sick. Seeing him now really makes me know that the fact that he made it through most of December
was a gift to us from God. He was so very sick. One of the hardest things about caring for him was that he wasn't
able to communicate (with words) how he was feeling. I just pray that he wasn't in pain.
We made it back safe and sound from New Jersey. It was actually at times harder than I thought it would be
to see my new nephew. Grief is a very strange thing one minute you're able to function very well and then the next minute
you're unable to.
We've had a name change, the baby is Johnathan Paul. He's very cute and is home and healthy.
Easter was really hard....... but I've never been so thankful for Easter in my life. It's amazing how my faith
has changed in a year. I went from hoping there was a heaven to knowing there is one, there just has to be. It's
the only thing that makes sense out of all of this. I know that Marky is in heaven and he is safe, happy and loved.
Oh, do I miss him so.
Mary Cate is at it again..... she has a baby that she has named Mary. We have to take Mary everywhere with
us, Mary has a car seat and Mary even went to the Wiggles today with us. She wants me to carry Mary and wanted me to
hold her in my lap so she could see the Wiggles. I do it because I love her, but I don't like to do it, it's hard.
We have a new baby in the family. Mark Sr.'s sister Heather gave birth to Scott Paul Nalbandian this morning.
Both mom and baby are doing just fine. Mary Cate and I are on our way tomorrow to meet the new arrival. Right
after Marky died I thought that travel would be a great way to distract myself. Now I'm not so sure.
It's been three months now without our little guy. Although the swings of emotion are not as high as they once
were, the missing and the wishing haven't stopped. I don't know if they ever will. Everything has new meaning
now for me. As we approach Easter, I've noticed things in a way that I've never noticed them before.
The readings as mass have been especially powerful. Several weeks ago was the story of the blind man who regained
his sight. The first part of the reading asked, "Is his blindness because of the sins of his parents?" the answer
was no. Then, "is his blindness because of his own sins?" again, the answer was no. During Marky's hospitalization,
the first question really troubled me. I questioned what I had done that I needed to be taught such a horrible lesson.
Those much brighter than I assured me that this wasn't the case and I've come to believe them.
Last year I saw the Passion of the Christ while 9 months pregnant and really connected with the character of Mary.
I always knew that it must have been horrible to watch her son die but really didn't feel her pain. The thing I walked
away from the movie with was her deep agonizing pain that she felt. Little did I know at the time that in less than
9 months I'd be watching my son die. I'm not saying it's the same, I'm just saying I connected to her on the level of
one mother to another mother. I will never be able to hear the story again without feeling her pain.
Another thing that struck me was last week's reading of the passion. When Jesus asked that his life be spared
if it could be and if not, he would submit to God's plan. I had many a bargin with God going during Marky's hospitalization.
I believe that there is a plan, I trust in the plan because that's really all I have right now keeping me together.
Marky taught me so much during his short, sweet little life. I was his caretaker and protector and he was my
teacher. Not really what you'd expect from the parent / child relationship. I know that it's not what I had in
mind a year ago as I anticipated the arrival of my "perfect" son. The doctors and ultrasounds all said that everything
was perfect physically, I had no worries about that at all. Obviously his delivery brought us a big shock. But
my son was "perfect", his body just wasn't.
Happy Easter everyone!
Please keep Aiden Quigley in your prayers. He is a 21 month old waiting for a liver transplant.
He has been in the hospital with an infection. Pray that he moves up the waiting list and gets his call for a transplant
very soon. Also pray for his parents, that they might be given the amazing strength they need to travel down this road
This whole experience with Marky obviously has made an impact on the entire family. It's hard to know what's
going on with our older children.... because they're not three year olds, they're not as expressive as their little sister.
Sarah wrote an essay for a college application that she shared with us, it brought us both to tears and gave us some insight
into how a 17 year old feels when her baby brother dies.
Where Life Ends - Hope Begins, by Sarah A. Ricciardi
My life, as like many others, is one often compared to a roller coaster, a never-ending thrill ride full of various emotions
and experiences, twisting and turning toward an unfathomable fate. Most go by unnoticed, but, every once in a while,
I come across such an intense, penetrating situation that I can't help but be affected by it. One, above all others,
remains poignant in my mind until this day.
I can still feel my heart beating at an unnatural pace as I walked into the ICU. I couldn't believe how somber
it seemed. It was one of the most unnerving places I had ever been. No one was moving quickly or talking loudly
-- a world of mimes. My hands shook as I spent the required three minutes washing and drying them, cleansing myself
from dangerous bacteria. The nurse dressed me in a hospital gown and placed a mask over my mouth. I could feel
the warmth of my breath on my face and the sweat collecting on my body. The only lights I could see were those above
the cage-like cribs in which the unfortunate babies lie, so small, so helpless. It was hard to imagine that my own baby
brother was among them. He, who had only been born two days prior, had alrady been through so much pain and suffering.
As I approached my stepmother's familiar figure, I prepared myself for what I was about to behold. At the time,
I didn't really understand my reaction, nor expect it. All I knew was that, at the sight of my innocent brother surrounded
by intimidating machinery and physicians, I was overwhelmed with emotion. His fragile body simply lay there, no movement
whatsoever. Blood stained bandages and rags lay beside him, where a teddy bear should have been. He seemed more
of a robot than a human. The wonders of modern medicine.
At the realization of the precariousness of his life, my body involuntarily began slowly to shut down. The room
started spinning, the sounds faded. I couldn't talk, think, or breathe. As soon as possible, I staggered out of
the ICU into the hallway, ripping off the gown and mask as I went. Several people passed and stared at me, leaning on
the wall by the elevators, but I didn't so much as glance at them. My head was pounding, my chest was pounding, my body
was pounding. I slid down the wall and just sat there, for how long I don't know.
After a while, I was able to stand up and go downstairs where my father was waiting. Knowing that it would only
hurt him further, I kept my experience to myself. Why was he forced to deal with this type of pain? Wasn't his
life already complicated enough? Soon sadness was replaced by guilt. As a digestive disease victim myself, I complained
about sore throats and stomach aches. I had always thought of Crohn's disease as a painful curse, but my situation was
far less dire than my brother's. He was waiting for a small intestine, liver, and kidney transplant - which, as I soon
learned, was not a small order.
Every other week, I traveld to UCLA. With each visit, I hoped that we would get a call that there were organs available.
Nine weeks he stayed on the top of the regional transplant list. Nine weeks he patiently waited. For hours, I
would hold his hand and talk to him. I spoke about everything and anything. As long as he was listening, I was
there. When I would have to leave and go back to school, I prayed that the next time I saw him, he would have new organs.
On the last day of semester finals, those prayers were shattered. During my sixth exam, I received a message to go to
Student Services. Tears treaming down my face, I listened as my counselor told me they were taking my brother off of
life support. I was to get to LA as soon as possible.
My family and I sat with him for hours -- the shortest and longest hours of my life. I never ralized how contagious
tears were until that night. We took turns holding him and telling him not to be scared, that he was going to a better
place. I think we were reassuring ourselves more than him - telling him that he would not have to experience any
more pain. He would be in the arms of the Lord.
He passed away at 11:34 p.m., seven hours and seven minutes after I arrived. As I look back at his short but eventful
life, I am filled with a sense of pride. I thank God every day that I am a member of such a strong and loving family.
For the longest time, I had underappreciated what was right in front of me - the courage of my parents, the support of my
friends. However hard it is to see the light, I know my family will stay strong. Where life ended, hope began
- a hope that others may never face the pain that we have. My stepmother resolved that my brother's life was meant to
be a crusade, a crusade for organ donation. With the help of his web-site, local and national newscasts, and newpaper
articles, he has spread the word on the importance of organ donation. Thousands of people have responded to his story,
raising hundreds of thousands of dollars for the cause. I can only hope that someday, I can touch half the number of
lives that my seven-month-old brother did.
While we have raised tens of thousands of dollars, we hope over the years that our work with the Second Chance Foundation
will raise hundreds of thousands of dollars..... I see Sarah's slight mis-statement as a hopeful prediction.
Time seems to be going by very quickly, I don't know if that's a good thing or a bad thing but I'm taking it as a
good thing. Busy remains the best for me. We are working on the memorial golf tournament with the Second Chance
Foundation and making lots of progress. Harrah's Entertainment has come through with a significant contribution to underwrite
the event which is very exciting. The details so far are:
Monday, June 13th
Rio Secco Golf Course
7:30am Shot Gun, Best Ball
$175 per golfer with bbq lunch
$250 for tee sponsorship
$900 for a corporate sponsorship (includes foursome & tee sign)
Now we just have to fill the field and get lots of fun raffle prizes. If you know of anyone who might have
a raffle prize to donate, please email me.
A friend emailed me, her husband died about 10 years ago leaving her with two small children. She said she
hopes my "ups and downs aren't as volatile every day". I just think that's really what the healing is all about.
We know that our life will never be the same, we know that we will NEVER "get over" Marky's death and he will always
be a part of our lives, but the emotional ride that we go on every day is hard. I pray that we can get to a place of
peace. As time goes on the emotions are not as volatile as they were a month ago so I have hope.
Please join us today in a prayer for the Annunziata family. Craig is a partner in the Chicago office of Mark
Sr.'s firm. They lost their 9 year old daughter Ema this morning. She died in her sleep completely unexpectedly.
I'm sure their pain at this time is unspeakable.
I had a whole lot more to say today, but it just doesn't seem quite right to say it now.
It's been two months now since our sweet boy flew to heaven. I feel just like Mary Cate when she says "I just
want him back". Wish as I might I constantly must remind myself that he is never coming back. Yes, we'll see him
again but he's never going to be the little boy that was.
I've realized that for me, busier is better..... the days that I have a lot going on are much better than those that
aren't so busy. Filling my days with activity keeps things feeling more "normal".
One thing that we should be happy about is through this all our 3 year old has developed a very personal realtionship
with God. Over the weekend she looked at the ceiling and said "God, you please turn my shirt right side out!"
I kept myself from laughting and tried to explain that God works through people and that I was sure that she could do it herself.
Mary Cate talks about and to her brother all the time. Last Friday on the way to preschool I asked he what she was going
to say about the snow globe she was taking for show and tell. She told me that she wanted to talk about Marky in heaven
and not the snow globe. I wish I could have been in the room that day for show and tell. This week she had me
read a story to both of them, then asked "does it rain in heaven". This is not exactly what I thought
we'd be talking about when she was three.
We're almost set on the golf tournament..... I should have information by next week. Also, we will have the
adult 8" bracelets ready to go very soon. I'll post as soon as we're ready to go with them.
02/15/05 Tuesday (later)
Dylan Faith passed away this evening. She fought the good fight but her little body just had had enough.
Please keep her family in your prayers. ( www.caringbridge.org/il/dylan ) .
Happy Belated Valentines Day!
I found this on my computer and thought I'd share it with you. Mark Sr. wrote it shortly after Marky died but
never posted it......
This is Mark Sr. writing
today. Sara has graciously given me some space in her journal. I have not had the strength (courage?) to write down my feelings either publicly or privately since Marky
was born. I now fear that unless I crystallize my thoughts some of what I have
learned will be lost or forgotten in the busy rush of life that will no doubt return.
I guess a good journal should be more like stream of consciousness---just a pouring out
of feelings. However I cannot shake the legal training which requires me to organize things as neatly as I can. Perhaps its also a male thing---talking about one’s feelings is a major event when you are a man
and is usually only done under the pain of paying $150 per hour to the listener. I
will be learning new things from Marky’s short life for a long time but I have already learned at least the following:
The importance of organ donation.
Of course much has been written about that both on Marky’s home page and elsewhere. I believe that many people fail to designate themselves as organ donors through inertia
or ignorance. Speaking just for myself I for many years foolishly thought that
the only way one could become an organ donor was to take some action when renewing one’s drivers license. Every four years for a long time I would forget to designate and then say “Darn, I’ll have
to remember in four years”. For some reason, possibly as part of some divine
plan, last year at license renewal time, (not too long before Marky was born), I remembered and designated myself as an organ
donor. Could that just be a coincidence?
Now I know a little more and there is no need to wait for a visit to DMV—any one at
any time can fill out the form (available at http://www.nvdonor.org/pdf/DonorRegistration.pdf.pdf for Nevada residents and at http://www.donatelife.net for other states).
Of course one critical organ donation decision—whether to donate the
organs of a deceased child—is much more complicated. Prior to Marky’s
death I had sort of a subliminal understanding that if he did not make it of course we would donate his organs—how could
we refuse to do what we were asking others to do? But upon his death I was surprised
at how uneasy I then felt about the prospect of having his little body disturbed in such a way. We did some soul searching and Sara and I ultimately decided we must offer his organs. But the experience caused Sara to say something that only our tiny local newspaper picked up: “Organ donation is not the easy thing to do but it is the right thing to do.” Marky’s life and death enabled us to walk in two different pairs of shoes—those of parents
whose child needs a transplant and those of parents of a deceased child whose organs might help others. We learned a lot from those walks but I pray we do not get any new shoes for a while—our emotional
closet is full.
2. Don’t let anything become more important than spending time with the family. How easy it is for people, (especially husbands and fathers) to make family time the lowest priority. I recently ran across this by Lee Iacocca:
"No matter what you've done for yourself or for humanity, if you can't look
back on having given love and attention to your own family, what have you really accomplished?"
Marky made it easy for me to decide to spend time with him—we knew his
time on this earth could be very short and I made it my priority to spend hours and hours at his bedside. The harder challenge is to make lots of time for our three year old –she’s so healthy and vibrant—aren’t
there still plenty of years for me to spend time with her? Maybe yes, maybe no.
Harder still will be spending time with our high school senior and college sophomore.
They don’t always have time for me.
No one on
his or her deathbed ever said: “I should have spent more time at the office”.
Reach inside yourself and you will find your inner strength.
During the last seven months I have confirmed what I suspected since my wedding day: Marky’s mommy is the strongest person I have ever met. Sara
endured Marky’s close encounters with death with a calm and courage that I would not have thought possible for anyone,
let alone a mother. Until Thanksgiving she was at UCLA without me and shouldered
the good and bad news alone at least 5 days a week. Just hearing the developments
by phone sent my heart into my throat yet Sara was right there taking every blow in person and standing right back up again
for the next one. There is no doubt that her faith in God and the love and support
from her MOMS Group and her friends and family gave her what she needed to remain steady.
My inner strength came
very slowly. For example, technology always seems to come with mixed blessings. When I got a new cell phone over the summer it included a camera. I was able to take
a cute picture of Marky and make it the wallpaper on the cell phone screen. As
his condition worsened I dreaded making or receiving calls because seeing the picture would quickly reduce me to tears. Now, having seen Sara’s example and with God’s grace, whenever I am feeling
weak or down I open the phone to gain courage by looking at one of the bravest people in the world—my son.
The old cliché is that
God does not give you more of a burden than you can bear. I think the old German
folktale says it best:
There once was a woman who had so many problems,
so many worries, so many troubles... that at times she felt she had more troubles than anyone else in the world.
One night she fell asleep while worrying about
her troubles and had a dream.
She found herself in a vast candlelit cavern,
surrounded by gray bundles of all shapes and sizes, as far as she could see. Walking toward her was a woman with flowing long
white hair and dressed in a long dark cape.
"Who are you?" asked the dreamer
"and what is this place?"
"This is the cave of the bundles of troubles and I am the
Keeper of the cave."
"Bundles of troubles?"
"Yes," the Keeper explained,
"each person who walks the earth carries a bundle of trouble on their left shoulder." The dreamer turned to look and there
was a gray bundle on her left shoulder - it had been there all this time and she never noticed! "If you wish," the keeper
continued, "you can take your bundle down and exchange it for another."
"Really? I can?" The woman lowered the bundle from her left
shoulder. Oh it felt so good to put it down. Then she began picking up different bundles, feeling their weight, trying them
on for size... She did this for hours until finally she said "Can I take this one? This one feels just right."
"Certainly you may" the Keeper told her, "but first, why don't
you open it up and look inside."
So the woman put the bag down and pulled on the gray drawstrings
and looked inside... "But these are the same troubles I brought in here!"
The Keeper of the cave smiled softly and nodded. "That's usually
what happens, but do not despair, for there is another bundle on your right shoulder that should help lighten your load."
The woman turned and saw another bundle on her right shoulder.
It had been there all this time and she never noticed! Only this bundle was woven of silver and gold threads and it sparkled
like a diamond in the sunlight.
The Keeper spoke - "Why don't you take down that bundle, and
So the woman did. The bundle was light as down. She pulled
the silver and gold strings and looked inside. And there were... all of her experiences and all that she had learned. There
were her talents, her gifts, her hopes and opportunities yet to come. The woman felt her heart fill with joy and she looked
up to thank the keeper of the cave. But the Keeper of the cave was gone. All the gray bundles were gone. The cave was gone.
And she found herself sitting up in her own bed with the morning sun streaming through the window, shining in her face.
Marky is certainly responsible for many of the gold and silver
threads in the bundle on my right shoulder.
Mary Cate and I have been spending lots of quality time together and it's really nice. One of the things that
was so difficult about being in Los Angeles was that I was separated from Mary Cate. While I was gone I had more than
one pitty party for myself about missing her 3rd year. Not that I'd ever change spending time with Marky but it
was one of the difficulties of being so far away from home. So I guess I've made a point of making the most of my time
with Mary Cate now that I have lots of time to spend with her. Last week we planted seeds to be transplanted to our
garden. The next morning she wanted to see our plants that we had "gardened", it's going to be a lesson in patience
I've been having a really hard time lately. I know that I'm going to have my ups and downs but I'd like an
up for a while please! Please don't be offended if I don't answer and email or phone call. Although I love to
receive them, I sometime have a hard time returning them right now.
Over the weekend we had my Mom's birthday celebration (Happy Birthday Mom). I found myself missing Marky more
and more. I need to remember my vow to not think about what might have been but to focus on what was and be happy for
Please remember to keep Dylan in your prayers, she's still hanging in there and can use all of the prayers she can
Just when you think you are doing better something hits you and you realize that you're really very far from it.....
But that's okay because I know it's going to take a lot of time. Last week was a good week because I was so focused
on projects and getting things done. It's easier to forget when you have to get things done.
I know that it's not "forgetting" or "getting over it" that I'm trying to do or should be trying to do. The
healing an acceptance are the important things and they take time. Right now I just really wish that I could turn back
time. I just want my baby boy back. I want to hold him and take care of him and make him "all better" like mommies
are suppose to do. I look forward to the day when the cut doesn't feel so new.
Now onto projects! The adult bracelets will be here sometime in mid-February, the youth & child sizes will
take longer since they are creating the size for me. We'll be selling them for $2.00 each with profits going to a new
foundation in Marky's memory. The new foundation will support the Second Chance Foundation and support families and
children who are hospitalized.
Mary Cate Minute- This week's questions were "why didn't Marky grow up?" and "what are him's friend's names?".
The first question is difficult to answer in a way that a 3 1/2 year old can understand. It's hard enough for me to
understand so I just kind of dodged that one..... the second question at first was difficult because for some reason I felt
the need to be honest and say I don't know. And not knowing kind of broke my heart. Then I realized that it's
okay to tell her names of other kids we know of who have died, I'm sure they're all his friends. We'll see what this
week brings for her.
Well, the above is nothing that I had intended to write today so I'll have to write again this week. Also, please say a prayer for Dylan. She is a 9 month old who is waiting for the same transplant as Marky
was. We don't know her family but I have emailed with her grandmother. Dylan is very critical and may not make
it to transplant either. Her web site is: www.caringbridge.org/il/dylan.
It's been a busy week. It's been a week of moving forward.....
We donated all of the formual we had left over (and it was a lot) to the Women's Resource Center. It's
a group that helps pregnant women and new mothers who need a little help with all sorts of things. We also donated all
of our left over medical supplies and understand that they may be going to southeast Asia for Tsunami relief efforts.
It feels good to be able to help others since so many people have helped us for the past 9 months.
We also met yesterday to discuss the first annual Marky Ricciardi Memorial Golf Tournament to be held in June.
The Second Chance Foundation is graciously naming the tournment after Marky! We are very honored. Mark and I will
be working on the event.
Lastly, I'm getting into the bracelet business to raise funds and awareness for organ donation..... I've ordered
several thousand DONATE LIFE bracelets (just like the LIFESTRONG bracelets). I'm excited to be able to do something
like this and it feels good to do it.
Like I said, it's been a busy week. Now if I could just start sleeping at night I think I'd be doing pretty
Well, it's been a tough few days. Saturday was the one month anniversary of Marky's death. Although I
tried not to, I spent the day looking at the clock and remembering what was happening at that time one month ago. In
a way, it seems like it's been a millions years since his death and in many other ways it seem like it hasn't even happened.
I keep thinking this is just a very bad dream.
On Saturday we also picked up the hand prints we did in September for Mark's Christmas present. The big one
with all of our prints broke in the kiln and the woman was trying to redo it but she wasn't able to so she just glued it together
since she knew I would want it no matter what condition it was in. I can't tell you how glad I am that I threw the kids
in the car one night in September, drove about an hour across town and then tortured them by pressing their hands in clay.
Today, with the help of a friend, we cleaned up Marky's room and put his clothes away. I guess for me, putting
the clothes in bins was the hardest part. Marky never actually spent any time in his room so I didn't have any of those
feelings of being in his space, it was just taking the clothes away. I've decided not to wash his bear blanket (the
one in the photo from 12/7) since it still smells like him. I'm glad to have this project over with.
Hopefully the rest of the week will be a little bit easier.
I've been learning a little more about organ donation over the past few weeks. I say a little because I just
haven't been able to really focus very much on projects. I can't tell you how many times I get distracted or just forget
to do something. Anyway, a report from July 2004 states that only 10 to 13 thousand people annually are even eligible
to donate organs, meaning that they die in a manor that keeps the organs alive. Of those only about 50% of families
asked say yes to organ donation. Sadly, 16% of families are NEVER ASKED if they would like to donate their loved one's
organs. If we could just at least get all families asked, think of the difference that could be made.
After reading the first part of the report I really wondered to myself why we were ever hopeful that Marky would
get a transplant. There are just so few organs available, especially when you have to be so careful about size as we
were with Marky. Many people, like our friends the Quigleys, are turning to living donations. Tina Quigley is
getting ready to give her son Aiden part of her liver. Unfortuneately, that was not an option for us, Marky needed
a whole liver and small intestine transplants with a living donor have only been done a few times with sometimes
very bad outcomes for both donor and recipient. I'll finish the report and give you more information later.
Today's Mary Cate minute...... she found one of the baby wash clothes in a kitchen drawer and just said "Mom, Marky
forgot to take this to heaven." I told her that you don't have to take tubbies in heaven. I'm not sure she liked
that since she LOVES tubbies.
What has really amazed me throughout our journey has been the love and support we have received from complete strangers.
In the hospital Marky received a box of wonderful things for him and for us from a group of women, we received a box via the
Second Chance Foundation with Christmas gifts for Mary Cate and Marky, and we have received many guest book entries and emails
from many people who we don't know. Now a woman named Mary, who lost her niece Sarah some years ago, has created a memorial
web site for Baby Marky. If you have a minute, take a look. She's done such a nice job. The address is:
We have been so blessed by all of the love and support we have received. In the past I sometimes didn't act
when I heard that someone was in a difficult situation or had experienced the death of a loved one for fear that I would do
or say the wrong thing. I know that I will never let that fear stop me again. I know that you just want people
to let you know they care, just like all of you have done for us. Thank you for making a big difference in our lives.
I know that all mothers think they're little ones are adorable but when I look at his photos that we now have all
over the house I just see such a sweet boy. He had such an expressive face, his eyes, his smile, his great big cheeks.
He definitely would have been a heartbreaker some day.
Yesterday we were leaving the house and we got about a mile away and I just had a feeling in my gut like we
forgot and left Marky at home alone. We've had such an intense time since May. When Marky was home I'd sometimes
get a little crazy, worried that I would miss something with his TPN or his other care. I guess I'm just temporarily
programed that way now. I know it will be part of the healing process to just be able to relax and not worry every moment.
Hopefully that comes sooner rather than later.
I actually think we're doing pretty well. Even though I may not feel like doing anything productive right now,
at least I'm aware of it and am trying to pull myself along to get things done. I actually cooked dinner for the first
time in months last night and it turned out just fine. I have tons of papers to sort through and things to organize
(oh yes, exercise is on the list too!) but I'm not ready to jump in just yet. I'm just giving myself plenty of
I'm stuck in a time warp..... the calendar in my closet still says October. Yesterday, Mary Cate and I found
a Halloween decoration in the front yard and I have lots of things that are undone at home. It's just kind of hard to
get back into the swing of things.
We received a card yesterday that was pretty perfect:
It's hard to reamin in the world and not feel a part of it--
to watch others rush about like nothing has changed when everything has.
Grief makes you feel alone.
I know all will get better with time. It's just going to be hard.
It's back to reality today, whatever that is! We returned from Maui yesterday after a very long overnight flight.
On the way home we were just talking with Mary Cate and lately she has been asking each of us "where's your mommy? and
where's your daddy?" Then she goes on to talk about GaGa being her grandma and that I call her grandma mommy.
Anyway, I told her that someday she would be a mommy and then I would be the grandma. With that she says "I want baby
Marky back. I want him to grow up into a big boy." I'd forgotten that Mary Cate always considered Marky "her baby"
It's hard to be back to "normal" and into the routine. I think it's going to take a while for things
to feel right again. I realized today that I'm a lot more distracted than I think I am. I made three wrong turns
on the way to an appointment today. I'm usually very good with directions.
While in the bathroom I hear from just outside the door a little three year old voice say: "Mom, you crying",
I answer, "Yes, a little bit". The voice says back, "Baby Marky?". I say "Yes". And she says, "He died?".
Well, that's about all I can take........ Every once in a while out of the blue she'll just report to us "Baby Marky
died". I guess it's good for us all to hear it, to make it more real.
From what we've read and what we've been told by the childlife professionals and social workers and therapists, this
is typical behavior for a three year old. They don't understand "object permanence" so they will repeat the condition
over and over.
Yesterday she said, "Baby Marky's diaper died". When Mark asked her about it and told her that diapers don't
die, she told him "Baby Marky was wearing a diaper". Therefore I guess she thinks it died right along with him.
Mary Cate loved her brother very much and I know that she misses him and is very confused about why he's not here
with us. She's been asking a lot about Sissy, as I write this I wonder if perhaps she's wondering why Sissy hasn't been
with us lately. We'll see Sissy on Wednesday so hopefully that will make her feel better.
My niece Kate is 10 months old today. I can't believe how the time has gone by since she was born, we've really
experienced so many of lifes challenges in such a short period of time.
Marking her 10 month birthday makes me think that on Sunday Marky would have been 8 months old. I've been thinking
a lot about that today. Every month since he was born we've celebrated his "month birthdays". Every month we would
have a birthday cake (many created by Mary Cate with the help of Carly) and I'd put a big party hat on him and take his picture.
Now I know that we can't keep track of the months or years anymore...........it's not going honor Marky for us to keep remembering
that Marky would have been X age now or he would be starting school or graduating high school. Marky's life here with
us was for 7 1/2 months and to honor him I will remember his 7 1/2 months that he lived so well and so happily instead of
dwelling on the "he would have been or he would be's".
This might not make a lot of sense to you because it's hard for me to express but thanks for listening today.
Happy Birthday to my wonderful husband. I'm sorry that our little boy isn't here to celebrate with us but I
know he's in heaven making sure that we have a great, sunny day here.
Some good friends told us last week that we were still numb and wouldn't really feel all of this for several weeks.
At the time I thought they were wrong. I thought I was feeling plenty then..... well, I'm beginning to think they were
right. It just hurts to not have our boy with us and when I see a baby it just makes me think of the "only if's".
My brother, Doc, gave us a wonderful book that Mark and I have both been reading. It's by Zig Ziglar, "Confessions
of a Grieving Christian". Zig's oldest daughter needed a lung transplant and became to sick to be transplanted so there
are some similarities to our family. It's such a great book. One thought that I'm clinging to is that if we believe
in God's plan then there is nothing that any of us could have done differently to change the outcome.
In the past few days I've just felt so much guilt thinking that I should have done things differently. The
last fews days of Marky's life were such a whirl wind, if only I would have changed something....... maybe he would still
be with us. Then I force myself to remember that it's not my will but God's plan that is working here. Thanks
for the book Doc!
While in the hospital with Marky we met many wonderful families. At times I would envy those who didn't have
any other children at home. It was so hard to be separated from Mary Cate even though it's what had to be done.
I thought that if Marky would have been our first child (first of the little kids) that things would be just a bit easier.
Now that Marky is in heaven, I can't imagine my life going on without Mary Cate to pull me through it. She
forces me to "be happy Mom" and the way she talks about her brother always makes me smile. God knows what he's doing.....
we just need to try to understand.
One thing that has been hard is that we've been surrounded by so many wonderful medical professionals that became
part of our daily life. In an instant, they are gone from our lives too. It may sound strange but it seems life
we lost some of our extended family too.
The Celebration was beautiful, a real tribute to our baby boy. We have so many people to thank that have been
so wonderful to us during this time. Some worked during their vacations, pulled things together quickly or tried
to shelter us from the rain. So thank you everyone! We sincerely appreciate your caring efforts.
Mark Sr. said that rain was appropriate, it's a tradition in the Ricciardi family. I'll take that as a sign
from Grandpa Joe that Marky is safe with him since it only rains about 5 days a year here.
Thank you also to all those who have left guest book entries or sent emails. The support we get from reading
them in indescribable. The Second Chance Foundation has received many contributions as well, thank you for that too.
This year as we approach the New Year, resolutions just seem so easy to me. I think this will be the first
time in my life that I've ever kept my resolutions. I have an angel in heaven who will be keeping his eye on me to make
sure that I do.
Marky's story is in the Henderson Home News today. This week his story was in the Las Vegas Review Journal,
Reno Gazette Journal, LA Times, USA Today, Yahoo News, Fresno, Palo Alto and other papers that carried the AP story.
He was also on our local ABC, CBS & NBC nightly newscasts. I am glad that his story is getting out and I pray that
Marky's story will help another child or adult waiting for organs.
This morning Mark said, I don't want today to end. I knew just want he meant. We want today to last forever
because neither of us wants to lay our boy to rest tomorrow. It is so final. But as I write that I realize that
it's not really final, it's just the beginning. My son showed me how to live and he gave me a mission to change the
world (as it relates to organ donation anyway). I will honor him every day when I, and the rest of the family, work
to make things different for others waiting for organs.
We have been overwhelmed today with support. Our story has now gone far and wide and more and more people are
learning the story of the little boy with the great big smile and amazing blue eyes. We pray that more people will consider
organ donation and continue to talk about it.
Please say a prayer tonight for a friend of Marky's. Zane Staebler was in the PICU at UCLA two beds down from
Marky, he was 6 months old. Today they are playing together in heaven. We pray for his Mommy and Daddy too.
They are very brave and loved their boy with all of their hearts.
I miss my baby boy. What do I do with his Christmas presents? I pray we have strength to get through
the day on Tuesday. Mary Cate keeps saying that Marky is playing with the angels in heaven and then he's coming home....
it breaks my heart.
Arrangements for Tuesday, December 28th will be finalized this morning and I will post them this afternoon.
We ask that in lieu of flowers donations be made in memory of baby Mark to:
The Second Chance Foundation
2069 E. Sahara Ave., Suite B
Las Vegas, NV 89104
We continue to draw strength from all of the emails and guest book entries that we have received. Please know
that we sincerely appreciate each one.
It is very strange to finally be home after 10 weeks. Even more strange to be home without my baby boy.
I don't know how we will ever heal our hearts, I know we will but right now we are just so very very sad for our loss.
It does bring us comfort to know that Marky is in heaven but we are sad that we won't ever be able to see what that little
boy with the great big smile would have become.
I'm really not strong enough to share much right now...........
I am happy that my baby boy flew to heaven sleeping in his Daddy's arms. That's just the way it should have
happened. I just can't believe that it happened even though I should have been ready.
We are making arrangements and I will update the site when they are complete. Right now we are planning to
have a Celebration of Marky's Life on Tuesday, December 28th at St. Thomas More Catholic Community in Henderson, NV.
We would like to ask that in lieu of flowers donations be made to one of several organizations that we hope to support.
I will put that information in my journal as soon as I have it.
I can't thank all of you enough for all of the love, support and prayers we have received from you. It has
made all of the difference in the world to us. Even though baby Marky's stay on earth was brief, he was able to
touch so many lives. We hope through donating his tissue he will help even more people.
12/21/04 Tuesday & 12/22/04 Early (Morning) Wednesday
This has been the worst night of my life. Marky is hanging on but he's not doing well at all. He had
an okay day post surgery. We weren't particularly worried all day. At about 8pm his dialysis machine stopped working.
After that it was all down hill. He was having a hard time breathing and his staturation of oxygen of his blood went
way down. They suctioned him and found that he had blood in his lungs. They're not sure if it's blood from a bleed
in the lungs or just blood tinged fluid that has come into the lungs. It has slowed down at this point.
He is on the dialysis again and they are pulling off some fluid but he's still way overloaded because he has had
so many blood products. His ventilator settings are way, way up too. He's now on all four of the blood pressure
medicines (he hadn't needed 4 since 11/26.
Please pray for strength for the three of us, especially Marky. He needs to be VERY strong to get through this
Happy Birthday to my sister-in-law Beth Bodensteiner! Her birthday is
Tuesday, December 21st. I hope she has a great day!
Nine weeks! It's been nine weeks since Marky was put at the tippy top
of the list! Hey list makers...... he's here and still waiting..... don't forget he's here..
I spent the night with him last night. I held his hand a lot and
I hope he really liked it. Mark Sr. had to go back to Las Vegas to do some work. Marky doesn't
like it when he leaves so he made it an exciting day so that Daddy won't leave anymore!
His dialysis machine finally clotted at 5:15am. They put the clot
busting drug in the catheter in his leg and left it there until 12:15pm. At that time they tried to put him back
on dialysis but almost right away he clotted the circuit.
Before we knew it the doctors decided to take him to surgery right away
to put in a new "porta-cath" . It's bigger than the other catheter and it goes into his chest. Going to
surgery is VERY risky for him right now because he's on the blood pressure medicines and he's generally a very sick little
boy. Well, he did really well! He was back to the PICU by 6:00pm and now he's back on the dialysis and everything
looks good. Right now he has about 2 extra liters of fluid on board (think of a two liter bottle of soda).
he's really uncomfortable but we're hoping that we can get some of the fluid off very soon.
I'm exhausted! It's been a tough couple of days. Last night we had a few things happen that weren't so
great so I stayed with Marky all night. I took some cat-naps but stayed up most of the night. (those of you that
know me well know that I need my sleep) Then when the ciruit clotted we started out day.
Marky was growing puffier and puffier. At one point they'd talked about rewiring the catheter in his leg but
they decided that wouldn't be a good idea and that surgery was the only way. As it was summed up for me "he'll die if
we don't get the dialysis going and he may die in the operating room getting his new catheter". Not much in the way
of choices..... Of course this all happened on the day Mark Sr. went back to Las Vegas to have a few meetings. After
a long afternoon, things started to look up and at this point Marky is back to dialysis and reasonable blood pressures.
Happy Birthday! (December is a big month for birthdays in our family.)
December 20th is my niece Joy Lynn Bodensteiner's 20th birthday. She is a sophomore at Arizona State University.
Marky's dialysis machine clotted again during the night. Oh how I
wish his kidneys were working so that we didn't have to use the dialysis machine. It makes us all (Mark Sr., Mark
Jr. & me) crazy at times.
His blood pressure hung pretty low most of the day so he once again
had fluid build up. When his blood pressure goes low they cut back on how much fluid they take off of him. Also,
they have to increase his epinephrine. They increased it a little bit but it's not too high.
Towards evening his pressures came back up. He got some plasma,
plateletts and cryo today. Oh how I wish we didn't have to deal with the dialysis machine. It is
so stressful everytime you hear the warning beep. Tonight it almost clotted again and they had to reduce the flow.
But by reducing the flow you increase the chance of it clotting. Next time the catheter clots the doctor want to keep
him off for 6 to 8 hours and put a clot busting medication (TPA) into the lines to see if that will help.
We've tried this before but not for that long.
Marky is just so bloated I'm afraid to have him off the machine for so long. When we gave him a bath today
it was hard to get under his arms and under his chin. He's about ready to pop.
As of tomorrow, Marky's been at the top of the list for 9 weeks. I really want to change the laws when this
is all over. I think the public thinks that there is "the list", one list that has everyone's name on it and you get
organs in the order that you're on the list. Well, there is a list but then it's broken down by regions. Organs
are offered to the region first (for kids, for adults it goes to the area first then region) and then if no one needs them
they go national. That means if organs come up in another region and they have someone that needs them but hasn't been
waiting as long as Marky, they will get the organs. I think there should be one list for kids since kids have to deal
with size issues that adults do not. Marky is what is called Status 1, that's the highest spot on the list. It
means that you need a transplant within one week. Adults usually do get their transplants within one week of becoming
Status 1. As we can see, the same is not true for kids.
Please say a prayer for LaNeigha. She was a little girl that couldn't wait anymore. She flew to heaven
last Wednesday. She was waiting in Pittsburgh for a liver and small intestine. She was 17 months old. She
and her mother Jessica fought the hard fight but now she is at peace.
Marky had another good day! His blood pressure was very good today. They did put him back on
the epinephrine overnight but the amount he's getting is very, very low. His dialysis machine clotted
this morning TWICE! and while he was off of it his blood pressure was very high.
They were able to take off some fluid today thank goodness. He's
just so bloated. He has over a liter of extra fluid on him right now. We're hoping to take a little bit off each
day until he's not so bloated. We're doing it a little bit each day because the times when they've taken a lot off in
a day his body has reacted poorly.
Thanks for praying for good blood pressure for Marky! Keep it up,
We had so much fun today (yes, we do have fun at times!) when Marky was of off the dialysis machine. We dressed
him up in his holiday shirts and had a big photo shoot. I think he was giving me the look and trying to tell me that
he had had enough of the flash in his eyes!
We don't move him when he's on the dialysis machine so that the machine will not have any pressures in the line.
If it senses pressure the machine stops and if it stops it clots. It is so freeing to have him off of the machine.
When he's on the machine I feel like he's very fragile and I don't want to do anything to make the machine stop.
We all had a very early start this morning. Marky's dialysis
machine decided to clot at about 3:30 am. The doctors decided that since he was off of the machine they would take
advantage of it and have a CAT scan of his head. (Marky can't travel while I'm hooked up to the dialysis machine)
The doctors were worried that his high blood pressure might mean that he
was bleeding in his head. He finally gets high blood pressure and then they're worried it's a bad thing!!! The
good news is that his scan was perfectly normal. He did have some fluid at the back of his head but they expected
that since the back of his head is flat now from laying on it for so many weeks and not getting up.
His blood pressure was good for most of the day so they took the epinephrine
off completely! Then they dropped the dopamine a little too. They ended up raising the dopamine a little but they
didn't have to put the epinephrine back on. Mark Sr. and I were so excited that they told everyone. He hasn't
been on just ONE blood pressure medicine for a long long time. He will be able to handle the surgery so much
better if he's on one or no blood pressure medicines.
Marky is doing such a great job. We are so very proud of him.
Both of his big sisters and Grandma Joan arrived this afternoon. They will all come over for a visit tomorrow.
When I'm woken up in the middle of the night my brain goes in two directions very quickly. The first is hopeful
that it's our call that organs are available. We've been told that many times they come at night. The second direction
is worry that something bad has happened. It's a really a strange bunch of emotions that run through my brain in a split
I was so glad that they did the scan this morning. We knew that a brain bleed was something that they were
worried about. The test this morning took a dark cloud away from our high blood pressure party.
What a difference a day makes........Marky's blood pressure was high today!
The doctors aren't sure why but we're all very happy about it. We were able to reduce his epinephrine almost in
half. He still has a lot of extra fluid in his body but the doctors want to remove it very slowly and hopefully
his blood pressure won't drop. He was pretty uncomfortable today because of all of the extra fluid.
It's a good thing that he's doing so much better today because tonight
his dialysis machine decided to quit working. I guess we've had a pretty good run with this one since it's
been working without stopping for five days. Mark Sr. is going to hold his hand while they put him back
God answered our prayers! I was so scared yesterday when his blood pressure was so low all day and then even
lower last night. Today it was so good, it was actually high. I pray this trend continues.
Well, it's been nine weeks since Marky has been in the hospital. It's hard to believe that we went into the
hospital in Las Vegas for a possible infection, a three day course of antibiotics and then we'd be out by Sunday.....
life is certainly unpredictable.
Thanks for checking in on Marky today! I know there are lots of people
out there praying for him and he can feel it. He's been as strong as has because of all of your support.
His blood pressure was pretty low today. They had to increase
the epinephrine drip a lot today. He also spent a lot of time sleeping. The biggest change is that they started
him on insulin today because his blood sugar was too high. The doctors say that it could be high due to stress. If
that's the case we all need to be on insulin!
The child life department at UCLA is so great. Today they brought
snow for the kids to play with outside and then everyone watched the Polar Express. A big group of kids in red robes
came and sang Christmas caroles. They were really great. Finally, I went to the "toy room" and was able to pick
out some toys for Christmas for Marky and Mary Cate.
I'm worried that we're headed back down the slope..... his blood pressure was very low today and the increase to
his epi really didn't do a whole lot for him. I pray that he was just resting today and that he'll be better tomorrow.
He has to hang on a little longer..........
I was speaking with Marky's transplant surgeon about the current lack of organs. He said something must be
going on out there, there just aren't organs for anyone right now. He said the best month for donations they've ever
had was a year or so ago when Oprah did a positive story on organ donation. So if anyone knows Oprah, please ask her
to rerun that show!
Happy Birthday! Happy Birthday! I'm saying it twice because
tomorrow, December 15th, is my sister Lisa Bodensteiner Myers and brother-in-law Paul Ricciardi's birthdays. I hope
they both have a good day!
Marky is very bloated today. He's over a liter positive, meaning
that he's taken in that much more than he's put out. With the dialysis machine having to stop so much over the past
few days he's built up a lot of fluid. That's a lot for a little guy like Marky. His nurse has been doing a great
job of taking some fluid off today but it's a slow process. If they go too fast his blood pressure will go down.
Over the course of the next few days they will work to get the extra fluid off of him slowly.
The good news is that the dialysis machine has been working pretty well
since Saturday night. It alarms all of the time which makes me VERY crazy but it hasn't stopped long enough to clot
He had a little more bleeding today than he's had in a long time from
the tube that comes out of his tummy. He needed platelets and red blood today to help him clot his blood better.
The doctors have been able to keep his bleeding under control.
I woke up very frustrated this morning. There have been many articles in the media about the United Network
of Organ Sharing's latest meeting. At the meeting they issued a statement that frowns upon people putting up web sites,
billboards and making media appeals for organs. I wish they would spend as much time educating the public and appealing
to everyone in the country to become organ donors.
What about changing our laws so that we're like Spain? Spain has an opt out policy meaning that you're an organ
donor unless you choose not to be. Would it be controversial? Most likely yes. Would it save lives?
Most likely yes.
All I continue to hear from UNOS is that 87,000 people are on the waiting list. That's a big and impersonal
number. It doesn't mean a lot when you hear it. It's just a big number. How about putting faces and names
to those numbers? What about the fifty percent of children that DIE waiting? Why doesn't the media grab
I'm sorry for ranting but I'm just frustrated. This is happening to my son and there is ABSOLUTELY NOTHING I
CAN DO ABOUT IT.
Wow, Marky has been at THE VERY TOP OF "THE LIST" for eight weeks now.
I can't believe that it's been that long. If he were an adult he probably would have been transplanted weeks ago.
Marky is just so small and he needs a whole liver and a small intestine that will fit inside of him. Sometimes
I wonder if he will ever get a transplant.
His blood pressure was pretty weak again this morning but it got better
in the afternoon. He needed lots of blood products today: plasma, platelets, red blood and cryo. That's pretty
much one of each available! Thanks to all those who donate blood.
The dialysis machine didn't quit today but it kept alarming. They
did an ultrasound of the line to make sure it's not clotted and everything looks just fine. The nurse has
been repositioning his leg around to try to keep it straight so that the alarm doesn't go off.
As far as the kidney transplant goes, the transplant surgeon is worried
that he won't be able to handle being on the operating table for very long. He's already planned to do the 10-12 hour
transplant of the liver and small intestine in two stages so that Marky has a better chance. The first surgery
will connect the blood supply of the liver and small intestine with his and in the second surgery several days later
he will connect everything else. The kidney part of the operation takes even longer. The plan is to see how he
handles the operation and make the decision during the surgery if they will be able to handle connecting the kidney.
If the surgeon feels he can't do the kidney it will be given to another child in need.
We have a plan, now we just need an amazing gift of organs.
Marky had us pretty worried this morning. He just didn't seem to be bouncing back from one of his low blood
pressure episodes like he has in the past. He's also been sleeping a lot more than before. He was much better
by afternoon and we felt a lot better about things.
It's amazing how Christmas has taken on a whole new meaning this year. I did do a lot of shopping for
the kids before Marky was hospitalized and have done some on the internet since then but it's just not the
same. I've known that Christmas is not about the material things but this year it's I feel even more that way.
I was asked what I want for Christmas and I really don't want anything at all and I really mean that for the first time in
my life. I just want people to have some relief from their pain and suffering - whatever that might be- because so many
people are dealing with so many things.
So far so good with the dialysis machine today. I don't want to jinx
anything but I'm thinking he may make it the whole day without a switch. He does have a weight on his leg to keep the
pressure stable but it's not bugging him too much.
His blood pressure has been low tonight. They had to increase
his blood pressure medicine and give him some more fluid to bring it up. With the dialysis machine starting and stopping
so much Marky is getting a little bloated. I think they tried to take too much fluid off of him today and his low
blood pressure is Marky's my way of telling everyone that he doesn't like it.
The doctor is coming to talk to us about the plan for the kidney part of
his transplant. I did find out (from the UNOS website data) that they've only done two Liver, Small Intestine and
Kidney transplants in the country and both of those people were over 18. So he'll be the third person and first child
to receive this type of transplant.
I really didn't want to leave Las Vegas this afternoon. Mary Cate wasn't happy about it and neither was I.
It's not that I don't want to be with Marky, it's not that at all. It's just that I want us all to be home and I want
him to be well.
I'm glad that I went to Mary Cate's recital. I thought I was surprising her with my visit but she was expecting
me there. She told Grandma Joan that I was coming. Thank God that I did.
I'm constantly amazed by the support we've received from complete strangers. Last week Marky received a box
from three women in Las Vegas that we don't even know. Inside it was all sorts of great things for him and us.
We put his new blanket on his bed and the treats in our tummies right away! Thank you so much for everything.
CVVH (the dialysis machine) is a four letter word around here! The
machine clotted this morning and again tonight. Marky is starting to get a little mad and he's always been such a happy
boy. I wish we could just start a machine and have it last for a week or so like it used to. The doctors aren't
sure what's wrong. Now they're thinking maybe it's the catheter that goes into his leg that's the problem. We
just want it fixed whatever it is. The good news is that he's tolerating it very well.
My blood pressure has been good today. My white count is back up
again so Mommy isn't quite as excited as she was yesterday.
Santa and Barbie (it's the Mattel Children's Hospital) came to visit me
today. They had a big party downstairs for the kids that could go and then Santa and Barbie came upstairs and took pictures
with us kids that aren't mobile. I told Santa that I needed some very specific requests for Christmas this year.
I'm trying to get the ball rolling by leaving town today. Mary Cate had her first ever dance recital in Las
Vegas so I decided to break away and see her. I'm hoping that by leaving town that organs will come up so that I have
to rush back to LA.
It's strange to be out of the hospital and doing "normal' things again. I don't know why but I was
a little scared to come back to my house. Once I got here I was very happy to see it, I miss our boring life in
I really wish that we could get this dialysis thing figured out. I just shouldn't stop this often.
Marky's white count is down! We're really excited about it.
It's not normal yet but it's the lowest it's been in a long time. We're all hoping that his infection can be beat before
he gets his transplants.
Once again we're having trouble with dialysis. This morning he had
to be taken off and put back on and then tonight we had to do it again. They don't know if it's the machine or the way
the whole thing goes into his body that is causing all of the trouble. I've posted a list of the dialysis machines that
Marky doesn't get along with. I hope we can find one that will work for a while. The good news is that he's been
tolerating it pretty well.
They were able to decrease one of his blood pressure drips today just a
little bit. Just a little bit each day will make us all very happy.
I can't believe all of the trouble we've been having with the dialysis. It's very stressful everytime it fails
and it's hard on Marky. I hope we can figure out what's going on and solve the problem.
Our surgeon is planning how he will coordinate the three organ transplant. What we've now learned is that a
separate transplant surgeon will do the kidney. They're concerned about how to do them all three at once because
of space issues (inside Marky). Also, no one can tell me if they've done a kidney transplant on a baby less than one.
Our transplant surgeon is at a conference right now and we can't wait until he gets back so that he can explain his plan to
us. We've been hearing lots of things from lots of people, some of which conflicts, but it's really Dr. Farmer who will
have the answers.
Happy Birthday to Marky! He's seven months old today. I brought
a cake and I made him wear the birthday hat but he didn't feel much like having a party today. He was very tired
from his big day of travel yesterday.
This afternoon the dialysis machine decided to fail again. It filled
with air and thankfully his nurse caught it just before the air went into Marky. They had to take him off
of the machine and get a new one. In the middle of all of this the nephrologist came to talk to me about the
results of yesterday's test. The doctor told me that Marky needs new kidney too. Both of his kidneys are in the
same but they only give you one new kidney because that's all you really need. They will leave his kidneys
in his body and add the new one so he'll have three kidneys. His kidneys aren't doing well from either reduced
blood flow from his failing liver and / or all of the medicines they've been giving him to stop the infections.
The nephrologist (kidney doctor) explained that Marky's kidney's are at 50% and they're not sure they will come back
after transplant. Since he's not sure they will come back, he feels it's best to transplant a kidney that he knows will
work instead of hoping that Marky's kidneys will come back after transplant. The good news is that kidney transplants
are "easy" in the great big world of transplantation. They've never done a small intestine, liver and kidney combo at
UCLA so Marky will be the first.
The only other excitement today was that two very tall men came by and
signed a basketball for Marky. I took his picture with them and had a hard time getting them all in the frame
because they were so tall. They play basketball for the LA Lakers. One of them was named Vlade Divac and the other
was Devon George. It was so nice of them to take time to come to the hospital to visit all of the kids.
I think I lied in my last journal entry. When they told me that Marky needed a new kidney today I wasn't numb....this
just shouldn't be happening to my little guy. He shouldn't have to go through this. He is so brave but I can tell
he's getting tired.
There is some good news here. A little boy named Daniel, who is turning one on the 26th, got his gift of life
with a new liver yesterday. He's doing very well and he's just so cute. His blood type is different than Marky's
so he got this amazing gift of a liver. Maybe Daniel is starting a trend and more organs will come up soon.
Mark and I want to thank all of you who joined us in fasting and prayer today. We really appreciate it!
Thanks also to everyone at Bishop Manogue HS! All of your prayers mean a lot to us.
We went on a field trip today to nuclear medicine to have a study
of Marky's kidneys. Field trips are major ordeals and he did very well. They had to disconnect him from the dialysis
machine before we went and he tolerated it well. Nuclear medicine is all the way in the basement and he hasn't
been moved from his spot in about three weeks so this was a good test of his ability to be moved. Hopefully his
next move will be to the operating room sometime soon.
He's been on dialysis for three weeks and the nephrologists (kidney
doctors) wanted to see how his kidneys are doing. They've shut down either because of his failed liver and
will most likely come back after transplant or they've shut down because they're failing themselves from all of the medicines he's
been on. The test he had today may help determine if he needs a kidney transplant along with the liver and small
intestine. If he does need a new kidney, Dr. Farmer will do it along with his other organs.
Marky just did so well being taken off and put back on the dialysis today. It's the best he's ever tolerated
it and I'm so proud of him. He did spike a temperature when they took him off of it (the process keeps him cold so we
don't know if he has a temp until he's taken off) but I guess that isn't much of a surprise.
I guess I'm getting a little numb to everything.... today when they told us they listed him for a kidney transplant
in addition to the liver and small intestine I didn't really react at all. Having Mark Sr. here does make all of
this a lot easier to deal with.
Marky is pretty amazing..... he had an excellent day today. Everything
is going well with his dialysis. His blood chemistry is really good too. We haven't had any trouble with the machine
for a week now.
His white count is still in the mid 20's and they can't find any infection.
He's still on lots of antibiotics and the doctors are trying to decide how long to keep him on them. Having an infection
at the time of his transplant will make things more challenging. When he gets his new liver and small intestine he will
be started on anti-rejection medication which makes him more open to infection. Not the best way to start. His
increased white count could also be just due to his failing liver, they just don't know.
They made some changes to the ventilator settings today too. Marky
is now working to initiate all breaths on his own. The ventilator is providing him with support to keep his lungs open. Since
his liver and spleen have gotten so big, they're pushing against his lungs and making it difficult for him to breathe.
More great news is that his blood pressure has been really good.
The Epi has been cut from .22 to .14 today and the Dopa is down to 10. This is a great trend!!!
Wow, what a boy we have! He's just fighting so hard and hanging in so well. His blood pressure was down
right high this afternoon. He's been very awake and his eyes have been more clear in the past few days.
The nurse said that Marky may be happier with the new ventilator settings because it puts him in control of his breathing.....
she said he may have control issues..... of course that doesn't run in our family does it?!?!
Marky had a really good day today. The doctors were able to
reduce both of his blood pressure medicines a little bit. HIs blood pressure stayed pretty good all day long.
Today he needed some platelets and plasma.
He was very awake today. We read his animal book and he
watched his Elmo balloon a lot today. I put the strings of his balloon into his hand and he moves it around.
Dr. Farmer says that this is a good window of opportunity for the transplant
since he's been pretty stable for the past few days. Maybe we'll get something soon.
Mark Sr. and I intend to dedicate this Wednesday, December 8th (the
feast of the Immaculate Conception) to a day of prayer and fasting for Baby Mark. As in ancient times, denying oneself
food for a day is a simple act of sacrifice that we offer to the Lord along with our prayers. We invite you to
participate if you are able. The extent of the fast is up to each individual.
He had a pretty stable day today. He's still on the two
blood pressure medicines and they had to go up on one of them last night. We're hoping that they'll be able to reduce
them back to where they were.
Marky needed some blood products this morning. He generally needs
something every day. It's either platelets, plasma or red blood cells. It's an odd day when he doesn't get anything.
Mark spent most of the day with Marky today. The boys did some
manly things like watching CNN and talking about manly things. I spent most of the day today with Mary Cate.
I can't wait until we're all together again.
We're very lucky that Marky has had such a good week. I
hope we continue to have many more good days. "Celebrating" my birthday at the hospital helped me to realize even more
that during all of this waiting we need to continue to live our lives as best we can and celebrate each day with our little
guy. It's just so hard sometimes when you have and 8x8 space and lots of medical professionals hanging around.
Happy Birthday to me! Boy did we have a fun party at the hospital.
Mark arranged to have lunch brought in for everyone in the PICU and I thought that was all that was happening for my party.
When I came in Marky had lots of balloons on his bed for me. Then a Mariachi band showed up to entertain everyone!
The trio played in the PICU and then strolled around the rest of the Children's hosptial. Everyone really enjoyed it.
Marky was stable today. His blood pressure was a little better
but they weren't able to reduce any of his medicines today. They were able to reduce the setting on his ventilator.
He was pretty comfortable most of the day even without any strong medicine.
Everytime I start to get frustrated about the fact that we haven't had an offer for organs and it's been almost 7
weeks at the top of the list, I just remind myself that our wait means that others out there aren't experiencing loss and
it's a good thing. I just hope and pray that a family that does experience a loss will say yes to organ donation and
Marky will be saved.
I really have a wonderful husband. He made my birthday very special under the worst of circumstances.
Thanks to all of my family and friends who called or sent special things. I am very lucky to have you in my life!
The prayer beeper was ringing off the hook today. The area codes
were from all over. Marky sure has a lot of people praying for him. He is a very lucky boy.
He had an okay day today. His blood pressure was pretty
low so they bumped the Epi back up and didn't take off any fluid. He's getting puffy again. I REALLY didn't want
them putting me back on the third blood pressure drip so I did everything I could to excite him into a better blood pressure.
The nurse put the NorEpi to Marky's forehead to remind him that he didn't want it (the nurse and I got a little punchy this
afternoon). As of now, they haven't put him on the third drip.
They were able to go down a little more on his ventilator settings.
He was a lot more comfortable today and didn't need the strong medication to keep him calm. We're not really sure why
he's more comfortable but we're thankful for it. Other than that, things were pretty much the same today.
I can't believe it's Friday already. Mary Cate arrived this afternoon
with my Mom. It's great to see her, I miss her so much. I'm missing out on a lot of her daily life right now but
it's what we have to do. Tonight out of the blue she started singing "Home Means Nevada" which is the Nevada State Song
and not an easy song to sing. It was so cute! She must have learned it at school for Nevada Day (October 31st).
Marky's day started out pretty slow and then his blood pressure got a little
better so the day ended up being very good. They were able to decrease his ventilator settings and the Epi amount.
He's still on Dopamine and Epi to support his blood pressure but not as much as before. And yes, the dialysis machine
worked well today!! They were also able to get a lot of fluid off of hime. He's not nearly as puffy tonight as he
was this morning.
Mark Sr. found a great Christmas tree for his bed space and I found some
Santa booties and a Santa elf for his bed. (we just love the hospital gift shop!) Marie at Mark's office
sent a Christmas bib and Santa hat for Marky's first Christmas. I'will have to dress hime up and take lots of pictures.
It's beginning to look a lot like Christmas in bed 8 of the PICU at UCLA!
I'm glad that we had a quiet day today. We got Marky a board book by Mary Engelbreit. It has big pictures
of cute animals and it's very colorful. Marky's eyes opened wide when he saw the book. We "read" it several times
today and it was great to see him react to it.
Again this morning the dialysis machine had to be replaced although this
time they said that his line may have been the problem. He's the kid who can't clot his blood at all and they say it's
his line that's the problem?!?! Mark and I can't figure that one out.
He's still on the two drips for blood pressure support and they haven't
been able to reduce them today. His blood pressure is okay but not great. He's retained a lot of fluid in the
past 24 hours since he's had to be taken off of dialysis twice. Finally this afternoon they were able to start to take
some fluid off of him.
He didn't quite bounce back after being taken off and then put back on the dialysis machine today like he did before.
His blood pressure is acceptable but not great and they weren't able to come down any on the Epi that they had to increase
I'm glad that he's comfortable now that he's medicated but I also worry about him being "hazy" all the time.
I think tomorrow we'll back off a little on the medication during the day and see how it goes. We just need to strike
a balance between calming him and making him hazy.
I've decided that we're going to put up a sign that says ALL I WANT
FOR CHRISTMAS IS A LIVER AND SMALL INTESTINE just incase anyone is unclear. Thank you all of checking in on Marky and
praying for him. Knowing that he has so many prayers and so much support makes this road a lot easier to travel.
He had a pretty good day today. After several hours of being uncomfortable
this morning they finally gave him some medicine that allowed him to sleep for 5 hours. I was so happy that he was comfortable
and not thrashing around.
He's still on the two drips for blood pressure support but they were able
to reduce both of them a little today. The doctors are so happy with his progress. The doctors said that
they would probably take him to transplant if they get a call with organs.
About 5pm the dialysis machine decided to quit working again. This
time his temperature didn't go as high without the machine on so that's a good sign. By about 9pm they had him hooked
up again and he got another blood transfusion. They had to increase one of his blood pressure medicines but hopefully
that is only temporary.
Wow, where did November go? I'm still stuck in October. Marky and I have been at UCLA for 6 weeks today
but who's counting?!?!
Marky is still working on his tooth. It hasn't quite made it out yet. I'm glad he had some relief today
and was able to rest. I could have done without changing out the dialysis machine again.
Finally, please say a prayer for a different Mark.....over the weekend a 10 year old boy named Mark passed away.
He had the very same condition as baby Mark but his volvulous didn't happen until he was 8 years old. He was doing so
very well post transplant and was almost ready to go home. His mother gave me a lot of support and I can't believe he
is gone. I can't imagine the pain she and her family are in right now.
The good news this morning is that he's now only on two drips
for blood pressure support, Epinephrine and Dopamine. Today they are reducing the Epinephrine and he's been doing great
so far. We're hoping that he continues this positive trend!
Machines and Marky were not friends last night. The dialysis machine
had a programming failure last night. Thank God he's as stable as he is so he could handle it. When the machine
fails all the blood in the machine is lost. They got a new machine and gave him a blood transfusion and we were back
While he was off of the dialysis machine his temperature went way
up so the infection is not gone yet. An infection will complicate his post transplant recovery. He's still
on lots of antibiotics so hopefully one of them will work.
He's very uncomfortable and I wish that he could tell us why.
He's constantly moving his arms, legs and head. This makes the monitors crazy and they were beeping all night.
Finally about 1:30am they gave him some medicine to calm him down and he was able to sleep for a few hours.
I'm so proud of him, he is so very strong. I just wish that he were more comfortable. The doctor
said he may be so uncomfortable because of the dialysis but we're just not sure why he's constantly in motion.
Let's all just pray for organs! They will ultimately make the call to transplant or not when the offer comes
in but he is definitely in a better place than he was last week.
He's just like "The Little Engine That Could"......... he's working
so hard to get more stable. His blood pressure is better and he's ALMOST off of the NorEpi. He should be off of
it completely tonight if things keep going the same. His doctors are very pleased with his progress so far. His
white count is still high so the infection isn't gone but they're happy that the blood pressure is more stable.
I got him some Orajel for his gums. Poor baby, he can't have Tylenol
or anything for pain but the doctor said the Orajel was okay. I just remember when Mary Cate was teething, she had a
lot of pain. His tooth isn't quite out yet but it won't be long now.
Marky's taking a nap right now but he's holding onto his Elmo balloon while he's sleeping.... it's so cute.
He's done a great job with his blood pressure over the past 24 hours. I pray that he continues to improve. With
all of the blood pressure issues my mind has been taken off of the wait for organs.
Now that the blood pressure seems to be under control our focus will be back on the organs. As of tomorrow
it will be 6 weeks at the very top of the list and we haven't had any offers. It's pretty scary to think about.
I tried to run a report on the UNOS web site to see how many >1 year olds with type O blood are Liver Status 1 (top of
list) and it came back with only one in the country. A few weeks ago the same report said 4 so maybe this is good news
but at this point I'm not getting my hopes up.
It was nice to have all of our family in town for Thanksgiving. Mark Sr. is taking the girls home today but
will be back tomorrow. It will be nice to have him here.
The big news from the PICU is not that he's on dialysis or the ventilator
or that he has 3 drips to support his blood pressure, it's (drum roll please!) he's cutting his first tooth!
It should be here by tomorrow. I thought I felt something a few days ago but now I'm really sure. I keep putting
my finger in his mouth and he doesn't like it. We're very excited about it and as it will come in handy when he gets
his new intestine.
He was very strong today! The doctors were able to lower one of the
blood pressure drips to almost 1/2 of what it was. His blood pressure has been good for most of the day. If he
can keep his blood pressure up, the doctors will continue to reduce the medicine (NorEpinephrine) until it's gone. We'll
have a party when it's gone because then he might be strong enough for transplant.
Marky's big big sissy Sarah spent the entire afternoon talking to him and
he loved it. She was telling him about all of the fun things that they're going to do when he gets better.
All in all it was a good day today..... we just take it hour by hour or lately 15 minutes by 15 minutes.... Marky
has his blood pressure taken every 15 minutes and Sarah and I spent the whole afternoon cheering him on every 15 minutes to
have a good blood pressure. It worked! It would be nice if Sarah could stay out of school next week so that
she can cheer her brother on. She did a great job.
He's still battling low blood pressure. They feel it's due to an infection
but they can't find an infection. They're doing cultures again today to see if they can find anything. They had
to start the fourth blood pressure drip which is not a good thing but they were able to stop it about 6 hours after they started
it as his pressure improved.
The doctors said that today he's not strong enough to be transplanted.
They will make the ultimate decision if/when the call comes in about organs. He really needs to have the blood pressure
support reduced to be able to make it through surgery. We keep telling him that he can do it, he's really trying
Marky's big brother Ben was here visiting today. Marky really enjoyed
seeing his big brother.
We were able to have a nice Thanksgiving dinner last night. My mom arranged
for it to be brought into the hotel across the street so Mark and I didn't have to be away from Marky any longer than we normally
are (the make you leave the PICU at shift change in the morning and at night). It felt odd not to have Marky with
us, I kept feeling like I'd left him somewhere..... it was a nice time with family but I wish we had been able to have our
whole family there.
Today we're back on the roller coaster. I know that this is the way it's
going to be from now on but I'm fighting it. I just keep thinking that I'll wake up and this will just be a bad dream.
I've heard lots of people say that before but I didn't really understand it until now.
11/25/04 Thanksgiving Day
Happy Thanksgiving everyone! He's pretty much the same as yesterday except
that the doctor says that his chest xray looks better today. We're all happy about that. He's still on the three
blood pressure drips and his blood pressure is okay right now. The goal for today is to take some more fluid off and
then work on getting him off some of the blood pressure drips. He needs to have the blood pressure support reduced before
the doctors will feel comfortable taking him to the operating room. We just hope that when organs become available that
he's ready for the operation.
We are thankful for all of you that we know and don't know that are praying
for Marky. God has a plan for him and He knows that Marky has tons and tons of love coming from all of you. Thank
Mark Sr. and I can't thank everyone enough for their love and support
over the past 6 1/2 months. All of those we know and all of you that we don't know have made such a difference in all
of our lives. Baby Mark is so surrounded by love, prayers and support. That's why he has been such a fighter so
far and will continue to fight.
I am thankful that my mom is here to take care of everything here behind the
scenes....I have clean clothes, things to drink and food to eat. I really don't have to make any effort outside of the
hospital and for that I am thankful.
We are thankful for the medical professionals who care for Baby Mark.
They give so much to him and care so much for him. It makes us so much more confortable to know that he's more than
a patient ID number to them, he's Marky and they take great care of him.
We are thankful for all of the support of our families. They have been
so wonderfully supportive of us.
Mostly we are thankful for our four amazing children. They are gifts
from God and blessings to us every day.
Wow, what a difference 12 hours can make. It's a good day in bed 8 of
the PICU at UCLA. We're all feeling good today. Late yesterday Marky's blood pressure started to improve and they
were able to take some fluid off of him. He was sooo puffy because his IV's kept putting fluid into him but nothing
was coming out of him. Yesterday they took 600cc's out which made him feel so much better. His body was about
to pop and now he's just rollie pollie again. His blood pressure is still good this morning and they're still getting
extra fluid off. They've gone down on one of the blood pressure medicines but he still has three of them going.
Mark arrived last night and he stayed with Marky all night long. I'm
glad that he's here. Sarah and Mary Cate will see him this afternoon. Ben is also coming for a visit on Friday.
Dr. Farmer said this morning that Marky may just interrupt his Thanksgiving dinner for a transplant after all!
We would all be so thankful if that happens.
Just when I start to loose faith something happens to restore it. Last night the mom of the little girl next
to Marky shared a song with me. The mom told me that they are not religious and don't go to church but her daughter
(about 10 with cancer amoung other things) woke up two weeks ago and sang a song to her. It was about Jesus and his
love. The little girl told her that she sings it with the angels.
Afternoon update- The doctors say that he can't be transplanted
right now because he's just too unstable. Please pray that he gets over this problem he's having right now so that he
can get his transplant. The doctor thinks he may have an infection that is causing his blood pressure to be low.
They've put him on antibiotics again (they just stopped them yesterday) and they're doing lots of cultures. He doesn't
have a temperature because the dialysis keeps his body temperature low.
His blood pressure is hanging pretty low. They've put him on
Epi, NorEpi and Dopamine to help keep it stable. He's very puffy because they're not able to take a lot of fluid off
of him due to my low blood pressure.
He's pretty uncomfortable and I wish that he could tell me what is making
him the most uncomfortable. He loves it when I rub his head and forehead. It makes him very happy and he
closes his eyes and rests. Once I stop he opens his eyes and he's not very happy.
I'm so glad that Mark Sr. will be here tonight. Marky loves him so
I'm very worried. I can't believe he's been at the top of the list for 5 weeks and now if organs come up they'll
have to pass. I'm just going to pray that nothing is available until this weekend.... that will give him time to rebound.
I hope he still has fight left in him. He's been fighting so hard, I just hope he can do it again with this.
He's still on dialysis and the ventilator. He's retaining a
lot of fluid but everytime they try to take fluid off of him his blood pressure goes down. The doctors are working
to keep it stable so he's on a few drips to take care of it.
His eyes look good and I'm happy about that. Yesterday he started
sucking on his fingers again. He hasn't done that in a few weeks so I got very excited. I told EVERYONE
about it.....sometimes I get excited about the strangest things!
Yeah! Mark, Sarah and Mary Cate arrive tomorrow. It's been ten days since they were here last.
I'm really looking forward to their long visit for Thanksgiving. Lisa, Bill and their two little girls are coming down
for Thanksgiving and Joy, Carly, Tommy and Jaymie are stopping by on their way to the beach. It's going to be
a busy week here at UCLA. Maybe with all of the visitors he'll get his organs this week.
Thanks to my mom and a friend of hers, I now have my very own rocking chair! I had one of the hospitals rockers
but when Marky went on dialysis and I wasn't able to hold him anymore I had to give it up. This way I'll have one as
long as we're here and when we leave we'll donate it to the hospital. Psychologically I need to have a rocking chair.....
maybe it's strange but it's better than taking Valium! :)
He's been on dialysis for two days now and his blood chemistry is looking a
lot better. He slept for about 24 hours after they put his new line in and that worried the doctors a little.
When he woke up and opened his eyes they looked better than they've looked in a while. He's not crying or
talking because he's on the ventilator. He is able to communicate with his eyes, eye brows and forehead.
Marky has always been a great communicator.
Dr. Farmer told us today that he's increased the size for an acceptble donor
to 25 kilos (about 55 pounds). That's much bigger than Marky is so the whole organs won't work for him. He will
have to take a graft of the liver and a section of the small intestine. This type of surgery has a greater risk but
at this point we have to do whatever we can to get a donor. Marky has been the first one on the list for more than a
month now and we haven't had any offers. We're still praying that organs come that are just the right size for him.
Wow, it seems like yesterday when I updated was a million years ago. A lot has happened but then at the same
time not much has happened. The roller coaster ride continues but I'm feeling like we're on the up end of the ride right
now. I just keep thinking about another mother they've told me about. Her daughter was in worse shape than Marky
is and the mother just kept telling everyone that her daughter would be fine. Guess what, she is fine now...... I just
need to keep believing that he will be fine and be thankful for all the time that we have right now.
It's been a busy few days here at UCLA. The doctors took out Marky's
Broviac from my chest on Wednesday. Even though it hasn't cultured positive for infection since 10/14 they decided that
it should come out just in case. We were kind of sad about it since he's had it since he was 10 days old.
It lasted 6 months which everyone said is very good for a baby. The Broviac is the line that he has been getting his
TPN through. They will now use a line in his leg to do the job.
Yesterday Dr. Farmer put another catheter into his right leg. Last
night he started on dialysis. His kidneys just aren't doing their job so the dialysis will clean his blood. The
levels of amonia in his blood are very high. The doctors have told us that when they get this high Marky feels like
he's drunk. They took him to surgery to insert the line so now he's on a ventilator to help him breathe. The doctors
aren't sure how long he'll need the ventilator. The dialysis makes him very cold so he has a warming blanket so he doesn't
get too cold. The dialysis is 24 hours a day. I don't like to see his blood leave his body and go into a
machine but I'm trying to be very strong for Marky.
He REALLY needs a donor soon. He's fighting very hard to keep going until
a donor can be found. Please pray that he can make it. I know that God has a plan for him but I
don't understand the plan right now.
I'm scared now. This decline has been so rapid over the past month.
He doesn't have much time to wait. Please keep praying for a miracle for baby Mark.
Not much new here at UCLA. He's still in the PICU and it's been a month
now that he's been in the hospital. He's getting lots of blood products most every day. He did take yesterday
off and had zero transfusions!!!
His breathing is very fast and they still have him on the vapotherm.
He's getting more used to the tubes in his nose but he does still try to pull them out sometimes. He had more fever
this week. The doctors aren't sure where the infection is because all of his cultures have been negative.
His kidneys aren't doing so well. The liver failure makes the kidneys
not work very well so the doctors are trying to keep him "balanced" so that he doesn't have too much fluid in his system.
Once he gets his new organs his kidneys should be just fine.
Marky is sleeping a lot these days. It's one of those things...... I'm
glad he's comfortable and can sleep but I also worry that he's sleeping so much. He doesn't have any interest in toys
and he hasn't smiled in a long time. The good news is that he's hanging in there. We really can't ask him for
anything more. He just needs to hold on until organs can be found.
Happy Veteran's Day! Thanks to all those who have made and are keeping
our country safe and free!
He's still in the PICU, it's been a week now. He's doing pretty well,
his breathing is still fast and I'm getting plasma, platelets and blood on a regular basis. His fever is gone and
he's more comfortable. He survived his shots very well! The nurses were going to do it in batches so that he
wouldn't get too upset and bleed too much. When they gave him the first set he slept through it and didn't bleed
much so I told them to just get them all over with. He didn't wake up at all and hardly bled at all. We were
very surprised but very happy.
Dr. Farmer told me yesterday that he has increased the maximum weight
for Marky's donor. What this does is increase the chances of getting organs but then it requires two operations.
If the donor is larger than he (right now he's about 18lbs) the doctor will cut down the new organs a bit and then in
the first operation he will leave the new organs outside his body covered with gortex. After the swelling goes down he
will have a second operation to put the organs inside his body. It's not the preferred method but if it's what we have
to do, it's what we have to do.
This weekend is the National Donor Sabath. Churches across the country
will be educating their members about organ donation and their faith's stand on organ donation. All major religions
approve of donation but many people don't know it. We're excited that our church, St. Thomas More, is participating
in the NDS. A little boy, Joey Parrish, who received a liver transplant at UCLA several years ago is going to speak
about his experience and also about Marky.
Lisa (my sister, Marky's Godmother) was in town on business so she is taking
today off to visit with us. It's nice to have her here. I can't believe that Mark and Mary Cate will be back tomorrow.
Grandma Joan will be back tonight.
It's kind of scary that the surgeon increased the acceptable weight for the
donor. I think it means that Marky doesn't have a huge amount of time to wait for organs. I've met people here
who have waited 2 months and 4 months in the hospital. For us so far it's been 4 weeks all togther (3 weeks at UCLA).
He's been Status 1 for 25 days now.
Wow, six months....... it seems like it's been six years. He looks so
much bigger to me than he did when he entered the hospital four weeks ago. I just can't believe that he's six months
old. Some days I'm more afraid for him than others and as the days of waiting drag on I get a little more scared.
I'm hoping in the next few days as the infection clears that he'll get back to some more stable days of waitings. I
actually made him laugh last week playing peek-a-boo. It gives me strength each time I see him smile.
He's still in the PICU. His breathing continues to be very fast.
The nurse was telling me that since his liver and spleen are so large, his lungs don't have as much room as they should so
he has to work harder. Most of the bleeding is under control right now. He has a blister in his groin and
because his blood is not clotting as it should, he's bleeding from the blister a lot. His temp has come down pretty
much too. Today he's getting all of his 6 month shots and 2nd flu shot. What a way to spend your birthday!
But he's hanging in there and not getting any worse. The doctors say
that he's a fighter and he's going to continue to fight.
Well, he's back in the PICU. He
was able to stay out for a week but yesterday he developed breathing trouble so he was moved back in. He was really
working hard to breathe so now he's on vapotherm which is humidified forced air into his lungs. They gave him plasma,
platelets, red blood and cryo yesterday so he's feeling strong today. They took out his right femoral line and put a
new one in on his left as the right side was the infected side. As soon as we get this infection under control he
should be feeling much better. He slept pretty well last night but he HATES the canula in his nose.
His breathing is better today but he's still running a temperature.
I'm able to rock Marky in the rocker from time to time and it settles him down.
He just has so many wires, tubes and monitors that it's not easy to get him from the bed to my arms but we do it anyway.
Mark Sr.'s mother Bea arrived yesterday from New Jersey for a visit.
This afternoon Mark, Sarah and Mary Cate are arriving. I think Marky misses his Daddy a lot. Everytime he sees
him he gets so excited.
Yesterday was pretty scarey for a while. It's just
so hard because we know that he's very sick but just how sick can/will he get and how will we know it's the end? When
he was having difficulty breathing I asked if Mark needed to fly in or not and they told me to hold off until the afternoon.
By the afternoon when they had him back in the PICU and on the vapotherm I was feeling much better so I'm glad that he didn't
He's sleeping A LOT today which I hope is a good thing. When he's
awake he spends most of the time trying to pull the canula out of his nose and grunting a lot. I'm hoping that yesterday's
cultures come back negative today and they can knock out the infection with the three antibiotics he's on.
I can't believe it's November already..... Mark and Mary Cate visited
last week. It was so nice to have them here. Mary Cate is so great with Marky, she is very concerned about him
and wants him to come home. I'm so thankful that she's able to visit him in the hospital (even in the PICU). The
hospital had a Halloween party for the kids on Friday and siblings were invited. Mary Cate (Ariel the little mermaid)
was so exicted to be able to trick or treat at the hospital. I think she likes the hospital a little better now.
Mark, Mary Cate, Sarah and Mark's mom Bea are visiting this weekend.
He was sprung from the PICU on Thursday and has been doing pretty well since
then. They've got the bleeding minimized and he hasn't thrown any up since a week ago Sunday. He has been
pretty uncomfortable for the past few days and doing lots and lots of grunting which means that he doesn't feel
very well. He started to a temperature yesterday (really Monday) and they're testing all of his lines
Marky slept pretty much all night last night thank God. He hasn't
done that in many days. He had hardly slept at all in the last few days. He was just grunting and grunting and
couldn't get comfortable. He's had a temp and was dehydrated. They've corrected his hydration, now we just need
the temp to get back to normal.
He's been in the hospital almost three weeks now. Some days (or
hours) I think I'm getting used to the idea that we now live at UCLA and then other times I long for our life back and
want to just take him home. We're just waiting and trying to be patient. It is a lot easier to wait when
he's feeling okay. Thanks to everyone for all of your love and support.
Marky is stable this morning. He’s still in the PICU and nobody is talking about moving him just yet. We’ve been here one week and have been in 5 different places: PICU, regular
room, PICU, step down PICU and now PICU again. His clotting factors are not good
so he’s been having lots of bleeding from his G-Tube. Because Marky has
a “closed” system, meaning that his stomach is capped, liquid can only come out from his G-Tube site or from his
mouth. So when he bleeds if the blood and clots can’t come out of his G-Tube
he will throw up blood. Well, that’s exactly what’s been happening
he’s been throwing up blood and it scares me.
Thursday night when it started he
was in a regular room so there wasn’t a nurse there. I don’t think
I’ll ever forget screaming at the top of my lungs for a nurse. I have no
idea what I said but after the second scream I had three nurses in the room. The
episode lasted for about three hours and after that they moved him back to the PICU.
Since then we’ve had 2 other episodes that were similar but those times he was in one of the PICU’s so
the nurses were right there.
Marky should be a vampire this Halloween. Since he was transferred to UCLA last week he'shad 4 blood transfusions, 2 plasma
transfusions, 4 platelet transfusions and 1 cryo transfusion. That’s a
lot of blood products donated by very nice people that we’ll never be able to thank.
The doctors say that until the transplant the bleeding will continue.
He's doing more sleeping than
usual. He just doesn’t feel too hot. His billirubin is up to 62.8 and the
doctors tell us that that will make me itchy.
I can’t believe Marky has been
in the hospital for almost two weeks. I really thought we’d be in for a
few days for the infection and back out again. When we arrived at UCLA a week
ago, after a VERY bumpy air ambulance ride, we didn’t know if we’d be here for a couple of days, week or more. Now we’ve learned that we will be here until a transplant is done. We met a little 15 month old that had her surgery about 4 weeks ago.
She waited in the hospital for 8 weeks before transplant. I don’t
mind the wait; I just worry that he won’t be able to hang on until organs become available.
If all goes well, we should be home
about February. Of course nothing ever happens just as it should so my goal is
to be home by his first birthday in May! I had a hard week last week, just getting
used to the idea that we were here for the duration. It’s so hard to think
about and it’s so hard to be away from Mark and Mary Cate. The plan is
to have them visit on the weekends.
We’ve been doing a lot of praying
and we know that many of you have been doing a lot of praying too and for that we are very thankful. I see little miracles happening every day with Marky so I know your prayers are being answered.
We made it to UCLA safe and sound yesterday at about 5PM. It was a very bumpy flight because of the storms
in Las Vegas and Los Angeles. Marky slept the entire time and was just fine. When we arrived at Santa Monica airport
we were met my an ambulance that drove with lights and sirens to UCLA. It was strange to be in the ambulance.
I never want to do that again.
Everyone here is really terrific. The doctors thought it would be best for Marky to wait for donated organs
here at UCLA so that they can keep a close eye on him and try to get my clotting factors under control.
They are not sure how long we'll be here so we're trying to settle in and get comfortable.
Mark is still the Pediatric Intensive Care Unit at Sunrise Hospital in Las Vegas. He started bleeding
on Sunday afternoon and lost a lot of blood (for a little guy!). He's been getting lots of plasma, red blood cells and
platelets since then and he's feeling better.
He may be transported to UCLA. The doctors there want to keep an eye on him. The good news is that he's
back on the list. The antibiotics did their trick and his infection is gone.
I'm home for the first time since last Thursday (today is Monday). We took Marky to his doctor's appointment last
Thursday and he had been running a temperature. The doctor had us go over to the hospital straight from his office to
be admitted. By Sunday his fever was gone and it looked like he was going to be just fine. Sunday afternoon he
started bleeding from his G-Tube site. It was pretty scary. They moved him to the PICU and have been giving him
lots of blood products for the past 24 hours.
Mark was with Sarah over the weekend checking out colleges on the east coast. Thankfully, he was able to catch
the last seat on the first flight out Sunday morning so he with me during the bleeding. I don't think I would have been
able to take it had I not had him there. Thank God for that blessing.
I'm home now because we've been told that Marky may be transported to UCLA tomorrow. The doctors there want to
keep an eye on him. The bleeding has stopped but his blood work is still troubling. We won't be sure if we're
going until we actually board the plane. There are a lot of hoops that must be jumped through to get the transfer completed.
I'm just getting a few things together so that I'll be able to be at UCLA with Marky.
Marky is in the hospital because he has an infection. Sara hasn't left his side. She sure is amazing! He
needs the infection to clear up fast so he's ready to receive organs when they become available. Please say a quick
prayer to help him fight the infection as soon as possible. If the antibiotics do their job, he should be able
to go home by Tuesday. Lisa (Sara's sister) updated since my Sara is busy with Marky!
Mark is 5 months old now! Wow, the time has flown by...... he was doing pretty well this week. Mark had
some major nose bleeds last weekend just to keep us on their toes. Mark's liver numbers were at all time highs this
week (not good news). We continue to pray that a donor will be found very soon.
He hasn't been sleeping like he usually does. I'm not sure why and am worried that he is having some
pain. I wish he could talk to me and tell me how he feels.
I have been busy getting ready for "the call". I'm trying to make sure that Mark Sr. and Mary Cate are well
taken care of while Mark Jr. and I are in LA for 3 months.
Mark Jr. met his cousin Joy Bodensteiner over the weekend. She goes to college at Arizona State University.
She is a lot of fun!
We went to UCLA on Friday. Marky and I flew and everything went well. Thanks to Mr. Bennett at
McCarran for taking such good care of us at the airport, it was very easy to fly. Marky slept almost all the way
on both flights so it was really pretty easy. We were picked up at the airport in LA by Ryan Falvey. He took us
to UCLA and back to the airport. It was so nice of him.
The doctor said Marky was very "robust" and Mark Sr. really liked that word. Dr. Farmer is very happy
with his weight gain and growth. He's up to 16lbs 10oz as of yesterday
and still growing! So weight wise, he's cleared the minimum that they would like him to be to transplant. Now
we just wait and pray for generous parents out there to Give the Gift of Life.
We ask that you pray with us that a donor will be found in time for Mark Jr. and for everyone on the list. Also,
we ask that you pray for all parents that are faced with the decision of donating their child's organs.
Otherwise, we sure didn't have a very good week last week. Marky just wasn't feeling good. He is usually
very happy and laughing a lot, last week he was just not himself. It scared me because as hard as things are right now
for us they really are easy compared to what we're going to be dealing with during transplant and post transplant. He's
feeling much better this week and has started smiling again.
Happy Birthday Heather! We're so glad to hear that you're going to have another cousin for baby Mark
to play with!
We are flying for the first time this week with baby Mark. We're going to UCLA for another check up.
I'm a little worried about trying to get through security with Marky attached to a backpack.
We're almost there weight wise. He weighted 16lbs 4oz when the nurse came to draw his blood today. Then he
had a bad bloody nose! It's so scary when he had them, this time we ended up with blood all over us and Mary Cate was
crying I think she was scared about what was going on. I did get it to stop thank goodness and now he's sleeping because
he cried so much.
We found out that he'll need shots for RSV. Although he was not a premie, they want him to have them so that when
"the call" finally comes he'll be well. If he has a cold when the call comes they won't do the transplant.
We had fun at the Valley NICU reunion yesterday. It was nice to see all of the doctors and nurses who took care
of him. They were so good to us.
Wow, have we had a week! Marky and I are on the front page of the Henderson Home News. It's a weekly paper
here in Henderson. I love the photo. I'm usually the one taking the pictures so we don't have many of Marky and
He had to have a platelet transfusion on Wednesday night. His platelet count has been low so the doctor wanted
to give him a boost. He's been having bloody noses a lot this week so I'm glad that we're going to see the ENT today.
Not only are the bloody noses not fun, but then his G-Tube gets clogged up from the blood.
The good news is that he weighed almost 16.5 pounds at the doctor yesterday.
This week's bilirubin is the highest it's ever been. It makes me nervous and I'm glad that we're going to the Doctor
He's really "taking" a lot these days, it's just so darn cute! We're so lucky that he is such a great baby.
He just smiles and laughes all the time.
This week's weight is 15lbs 11oz, at this rate he'll be almost
16.5lbs by his next visit to UCLA. We've working on physical therapy and he's doing really well. The
baby massage person came out last week and he cried most of the time. I haven't tried to massage him since.......... but
I''m sure he'll learn to love it.
He had a pretty bad bloody nose over the weekend. We are going to the ENT Doctor on Friday to see if
he can figure out why he keeps getting them. He also gets to see his GI Doctor and Surgeon this week!!! Oh, the fun
I have with Marky!
This weekend we're going to the Valley Hospital NICU
reunion. We're looking forward to seeing the great caregivers we met while he was there in May.
He weighed 15 lbs this morning! The doctors say the bigger he
is, the better his outcome will be. He also had an iron infusion this morning.
He went to the doctor last week for his four month check up and got three shots. He was pretty grumpy and
in pain but I can't give him anything by mouth because it won't do any good. Next time I'll see about getting a tylenol
suppository to go. We have to get Marky a flu shot as soon as they're available. The doctors want him
to have a flu shot because his immune system will not be very strong after the transplant. The drugs that they
will give him to keep him from rejecting the new liver and small intestine will also make him more likely to catch the flu
or a cold.
He had his first visit from the physcial therapist last week too. She said he's about a month behind physically.
It's mostly because he hasn't spent much time on his tummy because of the tubes that get in the way. The therapist
showed us how to excercise Marky and he is making progress already. This week the infant massage person is
coming out..... I think that will be a lot of fun.
Mary Cate start school last week so I have a little more time to focus on Marky all by himself. I think the three
mornings a week that she's busy will be good for all of us. I'm so happy Marky is growing and now up to 15lbs.
I'll feel better once he gets to the 16.5 pound mark but then I'm sure I'll find something else to focus on!
Today was the last day for our nurse Chris. She's moving on to a new job. She's been visiting us a least
once a week since Marky came home from the hospital. We will miss her.
My sister Lisa visited with her two youngest this weekend. Kate is two months older than Marky. It made me
nervous because Kate is very active, sitting up and grabbing everything. It's makes me wonder what it will be like in
a few months when I'm trying to hook him up to the TPN or change his dressing. I'm afraid that I'll have a little helper
and just when I'm done cleaning with my alcohol and betadine I'll have to start all over again.
He's up to 14lbs 4oz! We're all very excited
about his continued growth. He may have picked up Mary Cate's cold, he's started to cough a lot. Hopefully
it wil go away soon.
Wow, we were at the hospital all day yesterday. Marky had to have a blood transfusion. His blood
work on Monday showed that my blood leveles were low. He was VERY good and slept most of the time, I wonder what it
will be like in 6 months if we have to do them. We're hoping that he won't need anymore transfusions until
his transplant. I think I may donate blood..... I've only done it once when my brother needed it for surgery and
I almost fainted then. I just feel like I should do it to help others as others have helped Baby Mark.
He had his blood draw for his weekly work up and an iron infusion. He's been getting iron infused because
his body has no other way to take it in. The iron will help him to produce more blood. The good news is that he's
now up to 13lbs 13oz, we are so excited that he's growing so well.
He also got a new G-Tube today, that's the tube that drains his tummy. He's been going through about 10 outfits
a day because it's been leaking so much (okay maybe not always 10 but it feels like 10 every day). They're hoping
that this new tube won't leak as much.
I have been so overwhelmed by all of the support we have received from family, friends, coworkers and strangers.
It really does make a difference for us. I also want to especially thank everyone at CALPINE. I have always known that my sister Lisa has enjoyed working there but now I think
I know why. You are fantastic people! Thank you all so much for your guest book entries and emails.
We're back from UCLA. Mark Jr.'s check up went well and he weighed 13lbs 9oz. The whole thing
was pretty boring for him so he slept through most of it. The doctor said that his liver is hanging in there for now
and he has time to grow bigger at this point. The doctor says the bigger he gets before transplant, the better his
chances are for a good outcome.
Today is a big day, Mark Jr. gets to meet my Uncle Doc, Aunt Beth and Cousin Brian for the first time today. They
live in Virginia and are stopping by on their west coast tour! Brian is a good golfer so maybe he'll teach Mark Jr.
or Mary Cate a thing or two.
Wow, we've had such an outpouring of support from so many people. We will get back to you soon but we're on our
way to UCLA for a check up so we won't be able to get back to you right away.
If you missed it, go to the In The News / Favorite Links section and read the article
from yesterday's Las Vegas Review Journal.
Today was a busy media day for us. We were all surprised to see baby Mark on front page of the Review Journal this
morning. We are excited to be getting the message out so that people will consider organ donation BEFORE they are faced
with the decision. We also learned yesterday that nationally only about 50% of parents donate their children's organs.
Although we can understand and respect their decisions, we can't help but think that if organ donation was something
they considered before their tragedy, perhaps a different decision would be made.
We also had a short piece on the CBS local news. Some find it "controversial" that we created this web site.
They think that we're "advertising" for organs. Again, everyone can take what they want from this site, but our motives
are simply to get more people donating organs in this country so that ALL those on the list can be helped. Yes, it helps
our son, but it hopefully also helps many, many others at the same time.
Blood results today were okay, he shouldn't need a blood transfusion which is great news. So we'll be off to UCLA
on Thursday for his appointment on Friday. Hopefully the rest of the week is uneventful on the medical front!
He weighed 13lbs 9oz today, only 2lbs 15oz to go until he's at the minimum weight for transplant.
We're waiting for the results from today's blood work to determine if he needs a blood transfusion this week, hopefully his
numbers will look good and he won't need it. We're headed to UCLA this week for an appointment on Friday. Mark
Jr. sees the transplant surgeon every 4 to 6 weeks so that he can monitor his condition.
8/19/04 HE'S ON THE LIST!!!!! The list of people who need organs that is. We are all very excited about this.
He weighed in at 13lbs 7oz at the doctor today so he has 3lbs 1oz to go before he's at the minimum weight they
want him to be before transplant. Please keep him in your prayers.
He's growing like a weed! He is up to 12 lbs 14 oz. His labs this week were okay, nothing went
up which is what we like to see. The insurance company sent the letter to UCLA approving the liver/small intestine transplant.
We're hoping to be on the transplant registry this week. It will make me feel so much better just to have him finally
on the list even if he's not quite big enough yet.