Marybeth, Ode, and CC left the NICU on Wednesday. Thank God all is ok. While at the hospital, they enjoyed 2 nights with their little girl. Now they’re getting situated at home. Carrington has 10 toes, 10 fingers, and is just perfect in every way. She keeps them busy, but nothing is more important. Marybeth is very tired, like every mom on Earth. She is enjoying it though. Ode is of course the doting father.
We truly believe that sweet Jude and Thad have watched over their little sister. We continue to pray that those little angels have built a wall of protection around her, and will continue to protect her all of CC’s life.
Marybeth, Ode, and CC love you all, and appreciate ever call, text, prayer, and love sent their way.
“I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord.” And he worshiped the Lord there. (1 Samuel 1:27–28)
June 7, 2016
This is Jacquelyn, Marybeth's friend. She has asked me to update you all since she cannot get to a computer.
Carrington Grace came into the world today at 4:35pm. We are so excited! CC looks just like Jude, but she's like four times the size. She weighs 9 lbs. 3 oz. She came very fast and the cord was stuck around her neck and tight. With each push the cord got tighter and tighter! I got to hold her for about 20 minutes and then they sent us to the NICU of all places. They're worried about respiratory issues or an infection and took some blood for testing. They started her on 2 antibiotics as a precaution. We will most likely be here 24 -48 hours and see what happens. They tell me not to worry, everything will be fine. We will keep you posted. We love you.
June 7, 2016
It is hard to believe that it has been over a year since I have last given you all an update. I have been on an emotional roller coaster, and I am ready for a new adventure. We have experienced so many ups and downs since the boys have passed; it’s almost hard to know where to start.
Some say that rain comes from God’s tears; yet no one ever mentions if they are tears of sadness or joy. If we wait long enough after the rain, we might be blessed with his smile, another of God’s miracles we like to call a rainbow. After the boys passed away, we saw a beautiful double rainbow, and we felt like it was their way of communicating with us. That they were letting us know that after the rain comes beauty, and that they were just fine. It was pouring rain on Sunday. God was crying his wondrous tears, and when it stopped, he smiled his amazing double rainbow. Thad and Jude were with us. They wanted to let us know, let me know, that they were smiling too. The timing could not be any more perfect! Friends near and dear sent text after text with pictures of the double rainbow. My perfect little angel boys sent mommy a message.
Today is a very special day to me. It’s not only the day that I found out I would be a mom in 2013, the day Ode and I buried the boys in 2014, but it’s also the day that our daughter Carrington Grace will be born! Yes, you read right. Ode and I are expecting another miracle later today! We cannot wait, and I cannot sleep!
Over the last 9 months, we have been anticipating the arrival of our little girl. It's been so exciting. Ode and I simply cannot wait to shower our beautiful CC with love. We certainly have an abundance of it.
There has been so much to do and to prepare. I felt like I was hanging on by a thread. After Jude passed away and we were able to bury the boys, we received an update on Ode’s health. His tumor has not grown in size. That is encouraging. He still has a long road and we aren’t sure exactly what this means, but it is a prayer answered! We have many more that we are waiting on. We hired an incredible nutritionist that is going to get Ode on the right path towards healing. We are full of hope that this could be just what he needs. Please continue to pray for his healing.
All this stress has really gotten to me. A few weeks ago I was hospitalized for what I thought was acid reflux. It turns out that I have an aortic aneurism. We will need to monitor this. The doctor mentioned that if it doesn’t grow, this might be something I have had my whole life. Please pray that is the case, and it doesn’t grow.
I have a really special person in my life named Allison. She has such a giving heart. Her son, Johncarlo, recently turned one, and to celebrate, they threw a huge birthday party where all the presents they received were donated in Jude’s name to children suffering from cancer. I am overwhelmed by the kindness from everyone who donated in some way. (If you’re reading this, I adore you and think you are wonderful).
Carrington Grace hasn’t yet made her way into the world, but she certainly has captured the hearts of many! So many of our special friends came together to celebrate her. She does not have to want for anything! Thank you to my amazing friends for the beautiful gifts of clothing, toys, towels, blankets, bibs, strollers, car seats, bath tubs, binky’s, shoes, books, sugar, spice, and everything nice! She is truly blessed. We are truly blessed. There are no words.
On May 28th, Ode and I said “I Do!” It’s official. We were always going to get married, but the timing was never right. Someone said to me that the timing for life’s biggest events is never right. There is probably more truth in that statement than anything else. We are always waiting for God’s perfect timing for things. May 28th couldn’t have been more perfect. Ode looked so handsome that day. The sun was shining and our wonderful family and friends witnessed us becoming one. It was perfect. The day was perfect. We danced to “Hey Jude”, and it was magical.
I strongly feel as though we are all put on this Earth to serve a purpose. Thad and Jude were only here a short time, but they did so much. It is because of them that God has brought me so many amazing people. People that I can count on, people that have become life long friends.
Thank you! If I don’t say it enough, I just want to thank you. Thank you for reading this. Most of all, thank you for taking time out of your day to think of me, Ode, Thad, Jude, and Carrington. I love you all, and I cannot wait to update you once we get settled.
I know I am forgetting to share so many things with you, but I promise I will go back and write about what I missed. For now I will leave you with this:
The Bible says, “I have set before you life and death, blessings and curses, positive and negative; therefore God says choose life.” This is not a once-and-for-all matter. It’s a choice we have to make on a moment-by-moment basis. We must choose to dwell on the positive, choose to dwell on the good. The negative is always going to be around us. We have to choose to dwell on what’s right, rather than on what’s wrong. Choose to dwell on what you have, not on what you don’t have. Choose to think the right thoughts.
You cannot prevent negative thoughts from knocking at your door but you can control whether or not you’re going to open the door and allow them to come in. If you will stand guard over that doorway and keep your mind focused on the good things of God, the Bible says that “God will keep you in perfect peace.” You can have peace in the midst of your storms if you’ll simply learn to choose the right thoughts. That means in the tough times of life, instead of dwelling on your problems, you must decide that you will dwell on your God. Dwell on the fact that Almighty God is on your side. Dwell on the fact that He’s promised to fight your battles for you. Dwell on the fact that no weapon formed against you can prosper. If you start thinking these kinds of thoughts, you will be filled with faith and confidence, no matter what comes against you in life.
You may have gone through some disappointments, and things in your life may not have turned out as you had hoped. People may have treated you wrong. You may have suffered some major setbacks. But you never come to a dead end with God. He always has a new beginning available for you. Start dwelling on the solution. Dwell on the fact that God still has a great plan in store for your life. When one door closes, God will always open a bigger and better door. But you have to do your part and stay in an attitude of faith, stay filled with hope.
…Let us not love in theory or in speech but in deed and in truth…1 John 3:18
Love isn’t just about our words or thoughts; it’s about our actions. It’s about reaching out and meeting the needs of others. Step out and show others what real love is. Every act of kindness is a seed that will produce a harvest in your own life in return. Let your love be in word and in deed and watch how God pours out His blessing in every area of your life!
Have a Super Blessed Day! :)
Psalm 37:4
April 19, 2015
There are no words to articulate how grateful I am for everyone's kindness. This last year has been the most difficult for me, very hard to stay focused or to do much of anything. I have yet to return many messages nor have I written 1 thank you card. That will come, but for now please know that I am deeply appreciative and take comfort from the love and support shown by all
This coming Monday, Lisa Miele will be running the Boston Marathon in memory of my sons Jude and Thad. Since following Jude’s story Lisa has become impassioned about helping children in need. Lisa has worked tirelessly raising awareness and money for pediatric cancer research through One Mission. One Mission also helps put a smile on the faces of children dealing this horrific disease.
A strong, dedicated woman I am blessed to know. I admire her commitment to this deserving cause. Although only here for a short time, I know my sons made a difference. I see that through many things, one being Lisa's commitment to pediatric cancer.
Thank you to everyone who donated to this cause that's so near and dear to my heart. Best of luck on Monday Lisa.
May my angels' wings carry you throughout this journey....I look forward to waiting for you with your little angel at the finish line.
Good luck and God Bless.
April 12, 2015
Words fail to express the depth of my gratitude to Seth, Margie and the board of Stomp the Monster for an incredible honor and also for their
dedication and support to cancer patients and their families.
Stomp the Monster is a 501 c3 that was started by my close friend Seth Grumet. It was about 5 years ago when I met Seth, he was
impassioned about starting this organization and looked to Hope for Children Foundation for advice. I recall being deeply inspired by his
passion and ambition to start this charity. What I didn’t realize prior to our meeting, was that Seth was just diagnosed with Hodgkin’s Lymphoma
During the beginning of Seth’s battle, like Jude and I… Seth was extremely blessed to have so much support surrounding him.
However, what Seth quickly realized was there were many going through this fight alone. Some could not get rides to treatment sessions,
while others still had to take care of their families and homes while suffering through the sickness that comes with treatment. Instead of
focusing on himself as most do during such a difficult battle, Seth dedicated his efforts to help others in need. This is the reason Stomp the
Monster was started. Over the last 5 years Stomp the Monster has gone on to help thousands of families. They are currently helping people
in need everyday.
This past weekend, Stomp the Monster had their 5th Annual “Life is Sweet” Gala in honor of our late friend Craig Bars. It was an inspirational
night filled with many heart felt moments. The energy in the room was overwhelming. It was such a moving and powerful event! During the
gala, I was honored to be presented with the Thomas Rosamila Inspiration Award. Although the board chose to honor me, I believe its Seth
and the STM board that deserve the honor for helping so many people dealing with this terrible monster!
I’m grateful to my friends and family who attended this event, sent well wishes and donated to this amazing cause.
I would like to thank The Stomp the Monster Board for all they do. I am truly humbled and touched by this recognition given by such a special
group of people! You all helped during the most difficult time in my life, I will never forget!!!!
Finally, I would like to thank Seth and Margie Grumet for all they do. They have made a tremendous difference in this world.
I am blessed to call them my friends.
If you are interested in donating or getting involved with Stomp the Monster please visit their website. www.stompthemonster.org
Thank you all again and KEEP ON STOMPING!!!!!!
MARYBETH
FEBRUARY 27
A SPECIAL GIFT FROM A GREAT FRIEND. THANK YOU MATT ZOTAC
FEBRUARY 22, 2015 A Snowman for my angels
DECEMBER 31,2014
As I reflect back over the last year, I am grateful.
Most of all, I am grateful for my faith. It’s my faith that keeps me going every day.
My belief, there is a higher power, a reason for everything in our lives, a purpose.
Knowing that I will be with my loved ones again for eternity in a world filled with peace.
I am grateful for my family. My "family", not just through blood, but through love. This last year has shown me that the love of family and friendships can hold you up even
when you can’t bear to stand. The kindness of strangers can make such a difference in one’s life.
I am grateful for my experiences. Although the most difficult year, I would not change a single
second. This one year has shown me more love than I have seen in all of my years.
Last year on New Year’s Eve, I couldn’t help but dream about being home with my son. Thinking about what
the future would bring. If I had only known that it would be the last New Year’s that we would celebrate with him.
This last year has taught me to be in "THE NOW", be grateful for what you have, be grateful for life.
Appreciate every single second.
For 2015, I wish for you to be in the now. I wish you love, faith, happiness and good health.
I hope this year we all find "OUR PURPOSE", we love, we help and we make a difference.
Make a difference in your life, your family’s life, in a strangers life because that’s the true beauty in this world.
God bless you and yours in the coming year. xo
Happy 2015!
November 19, 2014
A year since of the birth of my precious sons. The day I received the most beautiful gift imaginable from
the most caring person I know. Life… The life of my twin boys.
One year ago to the day at 6:10 a.m. my sweet baby Jude arrived at 29 weeks gestation, 4 minutes later my precious
Son Thad. Carried by their Aunt Colleen via emergency c section, these beautiful boys were my dream come true.
The best day of my life. It’s amazing to me how one day can be better than all of the greatest days combined.
That was my day last year, a day that will never be surpassed. A day to be cherished forever…
It’s crazy how life can change in the blink of an eye.
On November 20th, 2013 when Thad was taking off the ventilator, he suffered a pulmonary hemorrhage.
After hours of trying to save his little life, my precious baby passed in my arms. Although I wanted to crawl in a ball and die,
I couldn’t because I had another life to love, another life to care for.
I had to learn to separate my emotions, to concentrate on my son that was fighting for his life.
Although I knew I had to bury one son, I also knew that I had to bury my emotions in a deep place. A place that I could
Keep put away.
I chose to spend every second next to Jude. The only day I was not by his side, was the day I had to go home
To make arrangements to lay Thad to rest. There was talk of Jude coming home on February 1st so I knew
I had to deal with Thad’s passing, the place I put away.
Arrangements were made for January 25th. I wanted to make sure prior to brining Jude home I mourned my precious Thad.
Unfortunately I didn’t get too. When I returned to Wilmington it was discovered that Jude had a large mass in his abdomen.
The day I was supposed to bury Thad, was also the day that Jude and I were airlifted to Children’s hospital Of Philadelphia.
After being diagnosed with Infantile Fibro sarcoma my brave son spent months in the fight of his life. In a place filled with hope,
I felt hopeless. Not a second passed when I wouldn’t have traded places with my son. I would have done anything to take
away his pain. I would have died, if he could live.
With all the suffering came so much love and I know Jude felt loved. Although every day was a treacherous battle, this little
soul brought so many together with faith and prayer. His life, though short, was not in vain. During the hardest days of our
lives the love and support of so many carried us through.
On May 22nd Jude left this world and reunited with his little brother. Not a moment goes by when I don’t think about my beautiful
Boys. I also think about all the people they touched during their short time in this world. I know they were here for a reason, to bring
Faith to so many and show the importance of love and hope…
Thank you for your kindness, for your support and for your love on my sons' birthday and during this most difficult time. It’s the love and
support that is helping our entire family deal with our loss.
Although I believe my sons have already made a difference, I believe God has a plan, and their story will continue to live on and help others.
With love,
Marybeth
Please pray for our friends: Joey Weikel, THE BORG fAMILY, Jude Cozzliono, The family of Missy MALONE, MARY Murray, Bob Howard, The Marchese Family,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Nolan, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Logan,Claudia Collins, Caden Zanes, Jamilia, all of Jax's little 1p36 buddies,
Kristen S, Sandy and Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia, Kenny, Avery, Kenndey, William ,
Crystal, Donna, Baby Phoenix, Michael M, Brady, Ryan, Lori, Alec, Donna & Delaney , Dina, Adam Drapczuk, Irene and Baby Maria, Joseph, The Osero Family, Fran Albrecht, Sa'Mya , Baby Ares,
Sophia Judit and Alexander James, Baby Isabella, Baby E'mya and Baby A'mon and Baby Kenny
Oct 2, 2014
My love and prayers go out to Doris Cofone and family. May Christian rest in peace.
Please pray for my close friends, The Marchese Family as Baby Joey lost his battle with cancer. May God be with his family during this terrible
time. We love you Baby Joey, you will be forever in our hearts.
Message from Katie Marchese below…
My precious baby Joey is in heaven now with the baby angels. God called upon my beautiful baby boy while in my arms surrounded by so much love this evening.
He won his fight. My precious love defeated cancer and survived two liver transplants and that was enough. Thank u so much for your love, concern and prayers
during this journey and life with my son. We are devastated. He was taken suddenly too soon. There are no words. His strength was unmeasurable.
We would of celebrated his first birthday August 3 in the hopes of shortly after that taking him home.
His yacht finally hit land but the land of Heaven. I miss him so much. Thank you all again my friends for your prayers.
Xoxo's it's just not fair.
JULY 4, 2014
Cancer has struck again, one of my best friends sons. Please pray for little Joey Weikel. Maria, be strong..We love you xo
MESSAGE FROM MARIA BELOW...
I want to thank everyone for the overwhelming support we've received so far.
I'm truly sorry that I have responded or called back. Please know I do appreciate them.
I've learned so much about cancer, people and just how great my "our" support system
is in just two days. I know "Team Joey" will come out ahead and Leukemia is going to
There are many to thank and so much to say, too many people praying to just walk away. Please dont' stop checking our site as there
are so many others in need of our prayers. I know that my sons will be smiling down from Heaven knowing that we are still gathering
together in prayer for those in need. Today I ask that you pray that both Dottie and Christopher to return home safe.
Thank you for your love, support and prayers .
Marybeth
Please pray for our friends: Mary Murray, Michael Champon, Don, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, Laura, Jolene, Calder, Ode, Bob, Ed,Colin,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Nolan, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Logan,Claudia Collins, Caden Zanes, Jamilia, all of Jax's little 1p36 buddies,
Kristen S, Sandy and Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia, Kenny, Avery, Kenndey, William ,
Crystal, Donna, Baby Phoenix, Michael M, Brady, Ryan, Lori, Alec, Donna & Delaney , Dina, Adam Drapczuk, Irene and Baby Maria, Joseph, The Osero Family, Fran Albrecht, Sa'Mya , Baby Ares,
Sophia Judit and Alexander James, Baby Isabella, Baby E'mya and Baby A'mon and Baby Kenny.
June 6, 2014
The Walz Boys – Middletown, NJ
Precious Angel Thad November 19, 2013 - November 20, 2013 Sweet Baby Jude Walz November 19, 2013- May 22, 2014
Heaven’s gain was our loss when our Precious Angel Thad & our Sweet Baby Jude were called back home by the Lord. These beautiful babies were so
desperately wanted yet taken way too soon.
They were born at 28 weeks via emergency C-section on November 19, 2013 at New Hanover Regional Medical
Center in Wilmington, North Carolina.
These beautiful boys were carried by their Aunt Colleen as their mom Marybeth is a cancer survivor and could not carry.
Jude Edward Lavery Walz was born at 6:11 a.m. He weighed 2 pounds 4 oz. and was 14 inches long.
Donald Thaddeus William Walz “Thad” was born at 6:14 a.m. He weighed 2 pounds, 1 ounce and was 13 inches long.
Sadly, on the second day of Thad’s life our little angle was taken by a pulmonary hemorrhage. Thad went to his heavenly home at 6:25 p.m. on Wednesday
November 20, 2013. Thad’s last moments were spent in the perfect spot… his mother’s arms. Although there were so many that did not get to meet Thad,
this sweet little angel gave us all a lifetime full of love during his extremely short time here on earth.
After Thad’s sudden passing his brother struggled every day, he was close to going home when they discovered a mass in his abdomen. On January 25, 2014
the day Thad was to be buried, Jude was airlifted to The Children's Hospital of Philadelphia where he was diagnosed with Infantile Fibro Sarcoma, a very rare
form of congenital cancer. Jude spent four months fighting harder than anyone should ever have too. Yet through this precious baby’s suffering his un-wavering
strength brought out so much goodness and made such a difference in so many lives. Faith was restored for many, thousands came together in prayer.
This little soul unlocked somuch love and compassion.
On Thursday May 22 after a long and very courageous fight Sweet Baby Jude lost his battle with cancer. Jude left this world at 7:04 p.m. while being held in his
mommy’s arms surrounded by family and loved ones. Jude’s family is at deep peace knowing that the boys are now reunited. As we try to comprehend this
profound loss we pray that the love, compassion and most importantly the faith that the boys brought to so many will always remain in everyone’s hearts.
If you would like to celebrate these sweet souls their service will be held on Friday June 6th from 2 -4 and 7-9 at Thompson Funeral Home, 310 Broad St,
Red Bank, NJ 07701 (www.thompsonmemorial.net)
Funeral services will be held at the Church of the Precious Blood Monmouth Beach, NJ on Saturday June 7th at 10:00 a.m.
(http://churchofthepreciousblood.org ) burial to follow at Fairview Cemetery in Middletown, NJ.
Both the service and the funeral will be open to the public.
In lieu of flowers we would also be honored to have you support an organization that the boy’s mom co- found, Hope for Children Foundation, NJ
Thad and Jude are deeply loved by their mommy, daddy, grandparents, their aunts and uncles, cousins and many others. They have touched so many
lives and brought so many together in prayer and love.
They will both be held in God’s hands until their mommy, Aunt Colleen and their whole family will hold them again in heaven.
We all have faith that that day will come and that day will be more beautiful then we can ever imagine.
Until then… they will always remain in in our hearts.
Friday May 30th, 2014
We've needed some time to breath, to mourn, to pray. We started to plan arrangements for the boys. Services will be held on Friday June 6th
from 2 -4 and 7-9 at Thompson Funeral Home 10 Broad St, Red Bank, NJ 07701 (www.thompsonmemorial.net) The Funeral will be held
on Saturday June 7th, 10:00 a.m at the Church of the Precious Blood in Monmouth Beach 72 Riverdale Ave Monmouth Beach, NJ 07750
(http://churchofthepreciousblood.org) Both service and funeral will be open to the public. Additional details and obituary to follow.
Please keep our family in your prayers.
With love,
Marybeth
Then little children were brought to Jesus for him to place his hands on them and pray for them.
But the disciples rebuked those who brought them. Jesus said, “Let the little children come to me,
and do not hinder them, for the kingdom of heaven belongs to such as these.” - Matthew 19:13-14
Sunday May 25th, 2014
With the heaviest of hearts I regret to inform you that after a long and very courageous fight our precious son
has lost his battle with cancer. Sweet baby Jude left this world at 7:04 p.m. on Thursday night while being held
in his mommy’s arms surrounded by our family and loved ones.
There are no words that can ever describe the anguish that I feel however I am at a deep peace knowing that
my babies are now reunited. As we try to comprehend this profound loss I pray that the love, compassion and most
importantly the faith that my sons have brought to so many will always remain in everybody’s hearts.
There were countless people that have reached out to us to let us know that Baby Jude had restored their faith,
showed such a deep love and brought so many closer to God. My deepest fear after Jude’s passing is that because of
this painful loss, because the miracle did not turn out the way we all prayed for; that people will lose faith and think
this miracle didn’t take place.
Regardless of this painful outcome I still believe that my babies were miracles. I trust that my sons were sent here for
a reason, for a great purpose. In my heart I feel that in my sons’ short lives they have done more for God than most people
do in a lifetime.
There is no body on this earth that loves my children as much as I. I used to tell them “I love you more than any person
has ever loved another, past, future or present”. I’ve always known true love but the love for my sons is greater than
anything that I had ever imagined or experienced. They are my heart, my soul, my life, they always will be.
I would be lying if I told you that I wasn’t angry, that I wasn’t broken and so truly disappointed. I believed with all of my being,
from the bottom of my soul that my Jude was going to survive and live a long, healthy life. I believed that he was put on this
earth to make a difference.
Although I don’t understand Gods plan this is what I do believe ….
I believe that my babies made a difference in this world
I believe that even though my sons never spent a day outside of the hospital they showed more love than most people do in a lifetime
I believe my babies turned so many people back to God
I believe my babies are in Heaven now
I believe when it’s my time; I will hold my babies again. I will also understand why
I believe that Heaven is pure perfection… It’s beautiful, it’s peaceful and it is bliss
I believe that in Heaven there’s no more sickness, no more fear, no more pain and no more sadness, there will be nothing that separates us from our loved ones
There will be nothing that seperates us from the Lord.
I believe once we see Heaven we’ll never want to come back
I believe that my boys are together again and that is where they were meant to be. They are watching us and smiling down knowing the difference they made in so many lives
I believe my babies were my miracle, I also believe they were God’s.
I still believe… I will never stop.
Thank you for your love, support and prayers. I will be back in touch soon, until then please continue to pray for my family.
With so much love,
Marybeth xo
OUR LAST HOUR <3 FOREVER IN MY HEART
The Brave Little Soul By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there
and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He
approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and
replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused.
"What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering?
Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other
motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as
God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed.
I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone.
They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this -
it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle
for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little
soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in
people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request.
But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for
this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however
they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you,
far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so
through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and
you will be ok." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he
unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.
Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual
journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old
friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone
prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened.
God was pleased.
Wednesday May 21, 2014
We are in desperate need of your prayers. Yesterday Jude was in severe respiratory distress so they had to have a Chest tube thoracostomy
done in order to drain the fluid from the space around Jude’s lungs. The chest tube insertion is a very painful procedure so my main concern
was Jude’s comfort which thank God seemed to be addressed. Initially the surgery went well and seemed to help Jude yet over night the tube
stopped draining and the problem remains. They have increased Jude’s oscillator settings until they figure out next steps. In addition to Jude’s
new infection, the UTI seems to be back. They held off on meds yesterday as they were concerned about the Medications taking a toll on Jude’s
renal function however we are now moving forward with antibiotics as Jude’s counts have reflected an active infection. Jude is still in complete
renal failure and once again is extremely edematous which is most likely due to this infection. The kidneys are no longer able to work at a level
needed for day to day life so we are now working with nephrology to determine what can be done to profuse the kidneys. Unfortunately diuretics
are no longer helping so the Hydrocortisone has been doubled. In hopes between this and the other treatments we can get Jude back on track.
I thank you for your prayers for Baby Jude. I also thank all who have been praying for Ode. I just received a phone call after his MRI and thank
God there is no new growth on the brain tumor. I pray that God continues to hear our prayers.
With love and gratitude,
Marybeth
Monday May 19, 2014 (Jude is 6 Months Old)
Yesterday Jude's silo culture came back Gram-positive with Enterococci bacteria. Enterococci can cause many types of infections
including urinary infection which has been the root cause of Jude’s problems over the last several months. I'm disappointed that it's
taken this long to determine an additional infection. I have asked for silo cultures many times and I'm always turned down by surgery.
Thank God Jude’s primary Oncologist suggested this culture. We are now waiting on microbiology to do a sensitivity test on the culture
to determine which Medication should help. Internal bleeding has finally stopped and Jude had a blood transfusion. We replaced the silo 2
times in the last 24 hours. It’s been a busy few days but all and all… Jude’s still fighting strong. Please pray we find something that kills this
infection and other infections once and for all. Please pray Jude gets on the right path
Thank you for your prayers for Baby Jude! They are working.
Marybeth xoxo
Sunday, May 18th (Happy Birthday Cousin Chad)
Thank you to Sarah, Cora, Halie, Jess, Mya (and her mom) Aunt Linda, Darleen and everyone else who helped or attended Sarah's
bake sale. Jude is so lucky to have such wonderful cousins and such a great family who would do anything to help us. We are
so thankful for all of your love, support and prayers. It's that which get's us through every day.
And now these three remain: faith, hope and love. But the greatest of these is love. - Corinthians 13:13
Friday May 17th, 2014
We are still watching Jude's chest tube output; it looks like we may have to replace his chest tubes as the output has slowed.
Primary surgeon will be by tomorrow to address the silo as it's been leaking fluid. So far, silo culture is negative. In addition to past issues
Jude's been bleeding internally; they are hoping it's a bleeding ulcer. They have provided meds to try to address this condition. Thank God
Jude's very sedated and seems comfortable. My little warrior is still fighting very hard and winning this battle. We will conquer cancer,
we will stomp this monster, we will win this fight! Please pray that Jude continue to do what's needed to get to a healthy, happy place.
We need your prayers! Thank you and God bless
Thursday May 16, 2014
Last night was a long night. I was woken up around 3 a.m. as Jude's respitatory alarm was going off. There was fluid buildup
in Jude's lungs which caused a need for higher oxygen. They did an x ray which reflected plural infusion. In addition, Jude's
lung issue, his silo came off for the 18th time. Fortunately, we were able to get both the respitatory condition and the silo under
control. Jude's urine output is still down and his white count is higher today than they were yesterday. Jude's primary oncologist
came by and expressed concern about the white count. He seem to think there is an infection brewing within the silo. They did a
culture that we should have back within the next 48 hours. Please pray for no infection. As usual we also need to pray for pee!
Thank you for your continued thoughts and prayers.
Marybeth xo
Thursday May 15, 2014
Jude’s had a very good few days. His edema has decreased significantly and numbers have been steady. He seems to be improving
with the exception of rising white blood cell counts and decreased urine output. With regards to low urine output the medical team did
cut his dose of Hydrocortisone and Bumex this morning so decreased renal function really isn’t a surprise. I’m assuming that they’ll
up his diuretic again tomorrow to see if that helps to profuse Jude’s kidney’s. They are trying to lower the does of hydrocortisone because
excessive doses can cause adverse effects such as infection and delayed wound healing. As far as the white count goes, it’s higher than
it’s been in weeks which can mean an infection is brewing however there’s nothing to do at this time with the exception of keeping a
close eye on it. Please pray that Jude continues to heal, that his white count decreases and his urine output improves.
As always, we truly appreciate your prayers. xo
We love you Aunt Lainie xo
Please pray for our friends: Mary Murray, Don, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, Laura, Jolene, Calder, Ode, Bob, Ed,Colin,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Nolan, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Logan,Claudia Collins, Caden Zanes, Jamilia, all of Jax's little 1p36 buddies,
Kristen S, Sandy and Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia, Kenny, Avery, Kenndey, William ,
Crystal, Donna, Baby Phoenix, Michael M, Brady, Ryan, Lori, Alec, Donna & Delaney , Dina, Adam Drapczuk, Irene and Baby Maria, Joseph, The Osero Family, Fran Albrecht, Sa'Mya , Baby Ares,
Sophia Judit and Alexander James, Baby Isabella, Baby E'mya and Baby A'mon and Baby Kenny.
Wednesday May 14th, 2014
It was a quiet day yet a special day for Jude, Ode and I. We received a visit from Jude's cousins Halie, Brooke
and Christian. We also got to see Aunt Nancy and Aunt Lainie. Not much to update which is a beautiful thing.
Please continue to pray for Jude's healing! Thank you and God bless xoxo
Tuesday May 13, 2014
This weekend was off to a terrible start but by the Grace of God on Sunday Jude began to turn a corner. It was a very special Mother’s
Day. Please pray that Jude continues to move in a positive direction. We need his kidney function to pick up, his body to stay
infection free and the swelling to decrease. If we can get Jude in a good spot we can start to speak about starting chemo again.
Who knows, maybe we can even start talks of putting those intestines back in his little body. Please pray for my son, please pray
for all of our friends in need! Thank you and God Bless.
" Then I told them about how the gracious hand of God had been on me..." Nehemiah 2:18, NTL
Father, thank You for Your gracious hand of favor on my life. I choose to believe that with You, all things are possible. I know that You are making a way
where there seems to no way. So I will brag on Your goodness all the days of my life in Jesus’ name! Amen.
Please pray for our friends: Mary Murray, Don, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, Laura, Jolene, Calder, Ode, Bob, Ed,Colin,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Nolan, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Logan,Claudia Collins, Caden Zanes, Jamilia, all of Jax's little 1p36 buddies,
Kristen S, Sandy and Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia, Kenny, Avery, Kenndey, William ,
Crystal, Donna, Baby Phoenix, Michael M, Brady, Ryan, Lori, Alec, Donna & Delaney , Dina, Adam Drapczuk, Irene and Baby Maria, Joseph, The Osero Family, Fran Albrecht and Sa'Mya.
Sunday May 11, 2014 / My First Mother’s Day
Remembering my beautiful grandmother….the woman that showed us all how to love. You’re truly missed.
To my loving mother… You’re my best friend and role model. Thank you for teaching me the way.
To my amazing sister law…. You’re my rock. Thank you for your role in making my dreams come true.
To my precious sons, You have ALL my love for ALL my life.
My precious angel Thad, I miss you every second of every day. You’ll always have my heart! Some day I'll hold you again.
My Sweet Baby Jude, You’re my everything. You have shown me the true meaning of love and life. I can't wait to hold you again.
Wishing all of you moms a special day! God Bless xo
Saturday May 10, 2014
Jude had a rough night. His urine output was still extremely low and the third spacing has become a huge problem. Jude’s edema has caused his
skin to swell so much that it’s now cracking, blistering and bleeding. My heart is broken worrying that my baby is in pain however the team has
reassured me that they have him sedated enough that he should be comfortable.
Due to his renal failure Jude now has hypokalemia (low potassium) which had caused his heartrates to drop overnight. To address these issues, the
medical team decided to cut the diuretics, to give a potassium bolus and stop the fluid replacement. Even though everything that was done would
normally slow down the urine output, to our great surprise at 2 a.m. our little warrior began to pee. His output is much lower than it should be but it’s
better than it was. I believe that everyone’s prayers are being heard. Please continue to pray that Jude’s urine output increases, that his kidney’s continue
to function and that the doctors get a handle on this third-spacing. I know some have lost hope but like I’ve said many times, I feel like my son is supposed
to be here, he doesn’t want to give up so I won't either!
I thank you all from the bottom of my heart for your love, support and prayers. I would also like to individually thank a few others who have touched
us this week...
Thank you to Scott and Dina Wolfe for having a fund raiser at their restaurant to help with Jude’s medical bills. I’m overwhelmed by your support. l appreciate
everything that you are doing to help my family during this difficult time. I treasure your friendship and love you both. I also want to thank all of our friends that
went out to support this event. I’m taken aback by everyone’s kindness.
Thank you to Jennifer Bosco. You have the heart of gold. I truly appreciate everything that you have done for us since my son has been sick.
You are an angel on earth and I am grateful for your support.
Thank you to Katie Dunn Marchese for your love and wisdom. You've been such a blessing to me, I believe God sent you, Joe and Joey into my life to help
me get through this trying time. I love you all xo
Thank you to my family for loving and caring for us, you are our life. Thank you to my girls for keeping me strong. You are my SOUL MATES and I thank God for you
every day. I’m so fortunate to have been blessed with the best family and friends but over the last few months I’ve been so moved by all of the support of their
children who have reached out to pray for Jude.
To Tori Lee, You have proven to my son that he can fight this fight and beat cancer, you are an inspiration. We appreciate you doing your bake sale in honor
of Jude. Someday Jude will be by your side helping you do the same for someone else! God bless you always.
My friend Kristen and her children were in the park this week when she watched her children pick dandelions then made the wish amongst each other.
She walked over to listen to their conversation when she heard them wish that baby Jude could come play in the park with them. Kristen, I look forward
to that day.
The Luttrell girls spent their Easter Sunday raising money to help Baby Jude. They raised $48 which I used to purchase Jude his very first piggy bank. I figured that
I can use that to teach Jude how to do the same thing that they did. I can’t wait for the day that Jude can work together with the Luttrell girls to raise money to give
back to other children in need. That day will come… Thank you Isabella, Madison and Payton… you girls all have such big hearts. xo
A very special thank you to Avery for Jude’s personalized book “ON THE NIGHT YOU WERE BORN”, it’s our favorite bedtime book. I read it to Jude every night
before he goes to sleep. I'm sure it helps him have sweet dreams each and every night.
This past Wednesday my best friend Colleen’s daughter Isabelle turned seven. Since Jude was born she has made sure to pray every day for her little
cousin. I spoke to Col earlier today and she told me that Izzy spent last night making me a Mother’s Day card because she remembered that it’s her Aunt Tink’s
first Mother’s Day. I was especially touched when I found out that Izzy’s birthday wish this past Wednesday was for Baby Jude to get better. To my beautiful
little Isabelle Rose… Tink, Ode and Jude love you so much. We thank you for your acts of love and for every single prayer. Always know that God blessed
us on the day that you were born.
I’ve had so many friends reach out speaking about how much their children pray and how they always ask for Jude. These kids never cease to amaze me in their
selflessness and their love for others. I truly believe that God hears every one of their prayers!
Thank you for your prayers, good night xo
Thursday May 8, 2014
It's been a busy few days with Jude, there's been quite a few changes. Jude's sedation seemed to be an issue and the most important
thing for me is to make sure that my baby's not in pain. Since Tuesday, we changed his pain meds from Morphine to Fentanyl. We also
removed his Medazepam and increased his dose of his Ativan. Thank God that seemed to do the trick, he looks so much more comfortable.
Jude is still in renal failure, unfortunately the diuretic Lasix that Jude has been on has stopped working. On Tuesday, they started a new drug
by the name of Bumex, the recommendation of Bumex actually came from Baby Joey's mom Katie (Thank you Aunt Katie). They used Bumex
on Joey when nothing else worked and the fluid fell off. The Bumex seemed to work for Jude initially, however it looks like it has now slowed
down. It's so important that Jude's urine output pick up, if we can get Jude's renal function to work and if we can get a handle on the third-spacing,
Jude's overall condition should improve.
Jude is in such a critical state , I beg you to please pray. Every day I hear that my son will not likely make it. As a parent, no matter what the reality is
no one should ever have to hear those words. Today, I asked the medical team to please stop repeating these words over and over. I also ask if
anyone comment on Jude's page to please only post positive words. I know that everyone is only trying to help and show their love but I don't want to
even think of my son not surviving. I've dealt with this already and it's unthinkable. Please only be positive!!!!!
I believe in the power of positive thinking
I believe in the power of prayer
I believe in God
Tonight, I ask that you pray that the Bumax will reduce the swelling and that Jude's condition will improve.
I ask that you pray that Jude will fight and survive.
I ask that you pray that GOD grant my son a long healthy life, I know if He does Jude will make us all so proud.
Below are words from the bible that came from Jesus's lips. My hope is that you have faith in my son and in these words the way I do.
Psalm 37:4 Take delight in the LORD, and he will give you the desires of your heart.
Matthew 7:7 "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you
Matthew 18:19 "Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven.
Luke 11:9 "So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.
John 14:13 And I will do whatever you ask in my name, so that the Father may be glorified in the Son.
John 15:7 If you remain in me and my words remain in you, ask whatever you wish, and it will be done for you.
John 15:16 You did not choose me, but I chose you and appointed you so that you might go and bear fruit--fruit that will last--and so that whatever you ask in my
name the Father will give you.
John 16:23 In that day you will no longer ask me anything. Very truly I tell you, my Father will give you whatever you ask in my name.
Matthew 21:22 If you believe, you will receive whatever you ask for in prayer."
Mark 11:24 Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Tuesday May 6th, 2014
It was a very difficult night but Jude remains strong. His potassium is still very high and urine output still dangerously low.
The medical team sat with me once again to inform me that they don't feel Jude will turn the corner. I continue to stand firm with
my belief that Jude will survive. There's been 5 nights since January 25th that I have been told that my son may not make it through
the night yet he continues to fight so hard. Please continue to pray for Jude, please pray for my baby's comfort and will. Please pray that my
son lives a long healthy life. Tonight I also ask that you pray for me. Although I truly believe, it makes it difficult when everyone tries to
convince you otherwise. I need prayers for my continued strength. Our faith and your prayers are what are getting us through this! Thank you xo
Please pray for our friends: Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, Laura, Jolene, Calder, Ode, Bob, Ed,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia, Kenny, Avery, Kenndey, William , Crystal,
Donna, Baby Phoenix, Michael M, Ryan, Lori, Alec, Donna & Delaney and Dina.
Monday May 5th
Please pray for Jude, he's in total kidney failure. He received the chemo on Friday; we thought this was the reason for decline in urine
output however after 3 days of the max dose of diuretics and steroids Jude's kidneys are still not functioning. Due to the latest renal
issues, Jude's potassium levels have now become dangerously high. The medical team is doing everything that they can to help.
I truly believe that everyone's prayers are what has kept my son alive and fighting. I ask tonight that you continue to pray for my baby.
We need your prayers more than ever.
Blessed is she who believed that the Lord's words to her would be fulfilled. For nothing is impossible with God!
Sunday May 4th
I ask that you join in tonight's universal prayer at 8 p.m. for Baby Jude. We need Jude to turn the corner very soon, every minute is crucial.
Please pray that God surround Jude's medical team, that He guide their hands and their minds.
Please pray that Jude starts to heal, we need his renal, respiratory and GI function to improve.
Please pray for Judes comfort, I can't stand the thought of my baby being in pain.
Finally, please pray for my miracle. We need a miracle!
I thank you for your prayers for Jude, I also thank you for your prayers for Christopher, his transplant surgery was a success.
Please know that I also pray that God always be with everyone that is here for my family at this difficult time.
I am forever grateful for your love and support.
Please pray for our friends: Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, Laura, Jolene, Calder, Ode, Bob, Ed,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia, Kenny, Avery, Kenndey, William and Crystal.
Saturday May 3, 2014
Jude continues to have a difficult time. Swelling has become worse, he's in renial failure, there are still complications with his respiratory condition,
silo and sedation. Jude's oncologists decided to administer chemotherapy yesterday, they gave Jude Vincristine but held off on the Dactinomycin
as they thought it would be too harsh under the current circumstances. Please continue to pray for Jude. We need him to turn a corner very soon.
Please also pray for our friend Christopher who is currently undergoing transplant surgery. He went into surgery around 7:45 pm tonight, the
surgery should take anywhere from 10 to 12 hours. Christopher’s family has been so active with prayers for Jude so I ask that we do the same
for Christopher! Thank you, good night and God bless. xoxo
Thursday May 1
For the last week I have been told that it's not likely that my son will survive however as long as he shows me that he's
Still fighting and not suffering I will continue to fight for him. I'm broken, I'm tired but I would spend every minute for
the rest of my life trying to help my son. I'm not going to give up and I can feel in my bones Jude will not either. I feel
like God is all around us. They tell me it would be a miracle but I still believe. I thank the Lord for giving my
baby such a will to live. Please pray.
April 29th
Jude's broviac line isn't drawing back which means no blood return. Unfortunately he is so swollen that the heal sticks to test his blood
are showing inaccurate results. The medical team tried to an arterial line but unfortunately they had no luck. I'm waiting to hear what
we can do in order to get accurate blood tests which are crucial for moving forward. Jude's silo came off last night for the 16th time. The
latest problem with the silo is due to the skin and fascia breaking down around the silo bag. Today I ask that you pray for Jude's healing.
It's been over a month and Jude's clinically not getting better. Please pray that God guide Jude's medical team. Continue to pray for my
miracle. I'll always be grateful for your prayers.
Sunday April, 27
There were a few issues but overall Jude had a quiet weekend, thank God. I pray this continues and Jude's little body begins to heal.
Please do the same. Today at the Vatican in Rome, Pope Francis canonized Pope John Paul II into sainthood. Pope Francis described
Saint John Paul as "the pope of the family." Pope Francis stressed his faith, saying he was filled with the Holy Spirit. Below are words
from our former pope that always stood out to me .
“I plead with you--never, ever give up on hope, never doubt, never tire, and never become discouraged. Be not afraid.” - Saint Pope John Paul II
God bless our newest saints, God bless Baby Jude and God bless all of our friends in need.
Thank you for your prayers.
Please pray for our friends: Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, Laura, Jolene, Calder, Ode, Bob, Ed,
The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke, Brady, George, Javier, Caleb, Zachary, Keagan, Chelsey, Barbara, Don, Beau, Angel, Connie, Barrett, Nathan,
Hannah, Qwendelyn, Margie, The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family,
Melissa, The Smith Family, Mr. Jacoby, Fran, Jude, Mr. Mejias, Mike, Mari, Jackson,Shyla, Julianna, Caden, Colin,Tabitha, Graclin, Izzy, Melanie, Kobe, Nicole. Lillie , Maxx, Chloe, Aiden,
Keya's family, Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie, Baby Michael, Barbara's family, Madison, Sophia and Kenny.
Saturday April 26th, 2014
Aunt Colleen and Uncle Donnie had to go back to North Carolina today, Jude and I are missing them already.
It was so helpful to have them at the meeting and extremely special to spend time with them and the rest of our family.
Unfortunately, the meeting didn’t go as originally planned. Jude has been so sick over the last several weeks that the
Doctors alluded that it’s not likely that he will recover. They said they would do everything possible to save my son but they
want me to be prepared. As a mother who already suffered this loss, I told them, there is nothing that anyone could ever do
to be prepared for the loss of a child. You feel like life is over, the pain and anguish are indescribable.
I also told them that I believe. I believe in them, I believe in miracles, I believe in my son and I believe in God.
I reminded them that we were sitting in CHOP, the best Children’s Hospital’s in the world, the place where “HOPE LIVES”
I asked them to think about the miracles that they’ve witnessed since they’ve been working here. I am pretty certain that
most attendee’s in the room had witnessed a miracle or two.
If nothing else came out of this meeting, the most important thing for me was to have these doctors leave with belief.
I want them to believe in my son the way that I do. I want them to have faith that Jude can recover. I want them to feel
the love I have for my baby because I know if they do, then they TRULY will do everything in their power to save his life.
Please pray for Jude.
Thank you
Mb xo
Aunt Colleen, Uncle Donnie and Sweet Baby Jude
Grandma and Pappy
Thursday, April 24 (Happy Birthday Uncle Ed, We love you )
Jude’s had a rough few days but he’s still fighting very hard. We are anxiously awaiting Aunt Colleen and Uncle Donnie’s arrival.
They should be here within minutes. Tomorrow’s a big day, we have the family meeting with Jude’s entire medical staff at 11:00 a.m.
Please pray that all goes well, pray for God to guide Jude’s Medical team and pray for my baby's complete recovery.
Thank you so much, God Bless.
Mb xo
Please continue to pray for our friends in need. Tonight I also ask that we say a special prayer for Tori Lee and Joan!
Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke,
The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith
Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family ,Mike Butler, Joan, Amar, Robbie and Baby Michael xo
Wednesday, April 23
Jude’s not in a good way. I feel the doctors losing hope, I know that they are doing everything they can to help my son but Jude’s just not
getting better. Please pray that Jude’s renal function improves and his little body starts to heal. Today I ask that you to pray for Jude’s medical
team. Pray that God guide their hands and their minds, pray that God gives them the faith to know that with Him anything is possible.
The picture below was taking within the first 10 minutes of Jude's life. I remember taking it and praying that God give both of my sons long
healthy lives, praying that they grow to be good men that make a difference in this world. I lost my Thad, today I ask that you to pray for God
heal Jude, today I beg that you pray for my miracle.
Monday April 21, 2014
It was a sleepless night and a long day for Jude and I. Jude is still in renal failure and extremely edematous. Jude's respiratory condition
continues to be a problem. The latest Chest x ray reveals collapsed lungs as well as fluid trapped in small pockets around the lungs.
The Respiratory team is working with Jude as we speak. Jude’s silo ring came off at 4 a.m. then again at 7 a.m. this morning. Jude's not
ready to have the silo removed however this has become a chronic issue. The most recent problem with the silo bag is that the areas of
Jude’s skin and fascia around the defect are breaking down causing the ring that holds the silo in place to continuously come out. Surgery
has fixed this temporarily however we are waiting to hear back from the surgical attendee as to a game plan for closure of the abdominal
cavity. Chemo is still delayed due to Jude’s condition. They were supposed to do another cat scan this week however that has also been
delayed because the contrast used for the cat scan can have a negative effect on Jude’s kidneys which are already a problem. On a positive
note, there is a family meeting this coming Friday. This will be the first meeting that will being held between the neonatologist, oncologist,
surgeon, and our family. I requested this meeting to ensure everyone is on the same page. I'm being told every day how critical Jude is so
although I know that I am in the best hands at Chop, I want to make sure we are doing every thing in our power to help my son and keep him
comfortable. My sister in law Colleen who carried the boys will fly in for this meeting. Col's in the medical field so she'll be able give her
medical input as well as help to express all of our concerns. The last few months have been so hard I'm so relieved to know that Colleen
will be here with us. She has been my rock during every low in my entire life. She gave me the only gift that made my dreams come true,
my beautiful sons. Col would give her life for Jude and I. We are so lucky to have her here with us, tremedously grateful to have her in this
meeting and truly blessed to have her in our lives. Tonight I ask for you to pray for all of our friends in need, that you pray for my precious
baby and that you pray for God to give the doctors the wisdom they need to save my son's life. I will be forever grateful for your prayers.
Good night and God Bless
Mb xo
Please continue to pray for our friends in need:
Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke,
The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith
Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster, Mikey D, Valerie, The Bevacqua Family and Mike Butler. xo
Jude’s first Easter April 20, 2014
Jude is in renal failure; his lungs are worsening, his silo came off again last night and there’s been fresh blood coming from his saline tube which can
mean internal bleeding. My son is in a very critical state. I was told on Wednesday that he may not make it through the night. I was told on Thursday
that anything can take his life. Since then I’ve been in a funk worried about my baby and even feeling sorry for myself. It’s been 5 months in the hospital
watching my child suffer.
Instead of my first Easter with Jude waiting on the Easter Bunny, we are waiting on doctors to come to Jude’s bed side.
Instead of getting water to color Easter eggs, we’re getting water to wash my son’s body after his silo came off for the 14th time.
Instead of having family over for dinner, my loved ones are visiting the hospital.
I feel exhausted, run down and stressed.
However, as I closed my eyes last night I thought about two words that a special friend told me when my sister in law was in early labor with the boys.
Those two words are I BELIEVE!
On Easter and moving forward, I will not accept anything negative because I BELIEVE.
I have to believe...
I can’t accept the words “he will not make it” or “anything will take his life”.
I BELIEVE!
I believe in my precious son
I believe that we are meant to have a beautiful life together
I believe that I love him way too much to let him go
I believe that he’s meant to do great things in this world
I believe that God will hear our prayers
I believe in the miraculous conception
I believe in the Resurrection of Jesus
I believe that nothing is impossible with God
On the holiest day of the year I am making a commitment to never stop believing in my son. I ask that you do the same.
Enjoy and appreciate this Easter with your loved ones because that is what life is all about.
Thank the Lord for his sacrafice which was the ultimate sacrifice on our behalf.
Wishing you all a very Happy Easter! May God Bless you all with good health and happiness.
Please continue to pray for our friends in need:
Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke,
The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith
Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster, Mikey D, Valerie and The Bevacqua Family. xo
Thursday, April 17
Last night was horrible. Once again I was told that Jude may not make it through the night. Jude’s blood pressure
was extremely high; his heart rate went dangerously low and it took hours for both to recover. They did multiple
tests to try to determine the cause of this issue. Although there were no findings related to last nights epidode
one of the tests uncovered that Jude has cerebral atrophy which is a decrement in the size of the brain. This is
likely due to long term steroid use. Although it’s a heartbreaking finding it’s something that we will have to deal
with down the road. I was told Jude is very critical so we need to concentrate on what needs to be done today for
Jude’s survival. He is still in multiple organ failure however he is in a better place tonight than he was last night.
I pray Judes little body heals from the latest episode, that Jude heals from this cancer and all of the related
complications and I pray that God will let Jude live a healthy life. Please do the same.
Thank you for your support and prayers.
With so much gratitude,
Marybeth xo
Tuesday April 15
Jude's been having a very hard time. He's been on antibiotics for over a week, however as of yesterday, he was continuously getting worse. Last night they changed
the antibiotic back to the one he was on during his last infection. Although he looks worse today, clinically his numbers are better. Oncology was in to check on Jude
this morning. They let us know it’s so important to get this chemo back in his little body but they are afraid to administer it under these difficult conditions. Please keep
your prayers coming for our little fighter. We need to get him back in a good place.
Thank you for your continued love and support.
Monday April 14
Please pray for my son. He needs your prayers.
xo
Sunday April 13
Jude continues to struggle. This infection seems to be taking its toll on him. He's more edematous than yesterday, urine output is extremely low and he seems very
uncomfortable. I ask that you please keep him in your thoughts and prayers.
Thank you,
Mb xo
Saturday April 11, 2014
Unfortunately, Jude's had a terrible weekend. His heart rate has been low since last Friday. I've been told not to worry but over the last few days
it's been dropping to a more dangerous level. He's been taking a new medicine (Precedex) since last week which can cause low heart rates. They
began to wean that med today, let's hope that helps. He’s also been very edematous however his electrolytes and potassium levels are off so they
can't give Lasix to help reduce the swelling. His intestines were out again last night. I've lost count of how many times the silo fell off. I have requested
a meeting with the surgical team so we can come up with a plan to ensure we tackle this problem once and for all. Please keep praying for our little
warrior. He’s needs all the prayers he can get. Let’s also pray for our other friends in need.
Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke,
The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith
Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster and Mikey D. xo
Thursday April 10, 2014
It’s been a very emotional few days for multiple reasons… good and bad.
First and foremost, I was informed that Jude has the same infection (Pseduomonas) that made him so sick last month. A Pseudomonas infection
is caused by a very common type of bacteria called Pseudomonas aeruginosa. Healthy people often carry these bacteria around without knowing
it and without having any problems. But for people who are weak or ill, these germs can cause very serious—even deadly—infections in any part of
the body. Earlier in the week we thought Jude’s symptoms were due to other issues mentioned in Tuesday’s post but now that we know about the
Pseduomonas, that’s likely the cause. Chemo is being held off indefinitely. Please pray for Jude; once again he’s in a critical state.
For those of you who don’t know me I am the Co- founder of Hope for Children Foundation (www.hfcf.org) HFCF is a 501(C3) that raises money
with the end result of making a significant positive difference in the lives of children. To date HFCF has donated over 2 million dollars to local charities
and individual families in need in our community. Even though the task of HFCF takes quite a bit of time and effort; it’s has been by far one of the
most rewarding accomplishments I’ve ever experienced. I’m sure I can also talk for our board when I say that. Through my work with HFCF I have
learned that giving is the most rewarding experience one can receive and lately I feel like everything positive that we’ve ever done has come back
ten-fold.
Today we received a very special visit from an HFCF past honoree. Michael Doherty was 12 years old when he went into cardiac arrest in
September, 2012. Mikey was playing in a basketball game when he suddenly dropped to the floor. He received CPR and was taken to the nearest
emergency room and then transported to CHOP by helicopter. Due to the lack of an AED and response time he suffered a Traumatic Brain Injury.
He is still an outpatient at the hospital where he receives intense speech, physical, occupational, and cognitive therapy rehabilitation daily. Since
his cardiac arrest, Mikey D has been improving every day. Today, Jude had the pleasure of meeting Mikey D. Jude was also lucky enough to receive
holy water, holy salt and holy pendants that helped Mikey D during his journey at Chop. I look forward to the day when Mikey D and Jude can pass
these gifts on to someone else in need, that day will come!
Tonight… my close friend Steve Bidgood; managing partner at Salt Creek Grille in Rumson is hosting his annual fundraiser to benefit HFCF.
I am deeply humbled to say that proceeds from tonight’s raffle will go to help with Jude’s medical expenses. I’m extremely grateful to Steve & Lynn
Bidgood for hosting this special event. Your friendship means the world to me. I am also so thankful to Eric & Karen Hinds and the incredible board
of Hope for Children Foundation. You have made such a difference in my life, you all have the kindest souls. I am honored to be a part of this
amazing organization and I treasure every aspect of what we do. Lastly, thank you to all of the HFCF donors and all of our friends that contributed
to tonight’s special event. Your kindness has and will touch so many lives.
Over the last 5 months we have seen so much love and compassion. We have had so many people reach out and want to give, want to help. It
almost feels odd to some extent to be on the other end - receiving vs. giving. It is certainly quite a humbling experience. I do believe it’s because of
all of this support along with our faith that we are getting through what is the most difficult time in our lives. As Jude grows older, I’ll make sure to
always let him know how blessed we’ve been to have received so many prayers and so much love from friends and strangers alike. I’ll always
teach him the value of compassion and try my best to make sure that he knows how significant giving can be.
Tonight I thank you for giving to us.... we truly appreciate your love, support and prayers.
God bless and Good night,
Mb (Jude’s mom) xoxo
You give but little when you give of your possessions. It is when you give of yourself that you truly give.” Kahil Gibran
P.S. Happy Birthday Lala xo
Tuesday, April 8
Please pray for Jude! He has become much worse over the last 24 hours.
Jude has quite a bit of blood coming from his saline tube. They hope this is due to ulcers and Gastritis which can be a symptom of the ongoing
steroid use. They have given Jude Zantac in his fluids which should help if this is the problem. Jude is also in severe respiratory distress. Last week
they decided to stop replacing all of the abdominal fluid when drained from the silo in hopes this would assist the issue of the silo coming off. It looks
like that change resulted in Jude becoming volume depleted so over the weekend they started giving Jude excess fluid to make up for the fluid loss. At
the same time Jude’s urine output dropped. X-ray from last night reflected a collapsed lung and today shows excess fluid in the lungs. In order to try to
help they switched Jude back from the conventional ventilator to the Oscillator. This change should deliver the pressure that Jude needs from the
vent without beating up his lungs. They have also done septic work up to rule out another infection. Chemo has been delayed again today, we will wait to
see how he is tomorrow. Please pray this setback is resolved soon so we can get Jude back on the right track! As always, I appreciate your prayers.
Monday April 7, 2014
It was a sleepless night for me and so far it’s been a rough day for Baby Jude. Jude’s been in respiratory distress which seems to be caused by the hypotension and
reduced renal function. They have been trying to replace fluid in hopes that would help but no luck yet. Unfortunately, Oncology decided that they want to hold off on
chemo until Jude’s respiratory conditions improve. Please keep Jude in your prayers. Thank you for your continued support.
Sunday April 6, 2014
The last few days have consisted of ups and downs. It was a tough weekend with lows but we had some family visits which always makes for a better day.
As far as sedation goes, Jude is definitely more comfortable then he was last week. In addition to starting the sedative Precedex they adjusted Jude’s
medication dosages based on his recent weight changes. This seemed to do the trick and now Baby Jude now seems content. Unfortunately we had some
scares with the silo. It came off again on Friday night but thank God it was fixed right away. On Saturday there was quite a bit of drainage which caused
surgery to make a visit. Before changing the dressing the surgeon put his fingers inside of Jude’s stomach to ensure the silo ring was placed correctly.
During that procedure there was quite a bit of blood coming from the silo site. The surgical team seemed to think the bleeding was due to the breakdown
of abdominal scar tissue in the gut. The bleeding did stop so surgery wasn’t too concerned however I was. During both silo issues, there was quite a bit of
fluid lost but they decided not replace it due to past history. Jude’s little body could not handle the loss of fluid which in turn caused him to have very low
blood pressure and decreased urine output. In hopes some of the changes made today should help. Looking forward to ‘Stomping this monster tomorrow...
another dose of chemo Week 2 of Round 3. Please pray that my little warrior conquers this beast! Let’s also pray for our other friends in need.
Thank you so much, God Bless xo
Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Colin, Jack M, Tori Lee, Lilly, Luke,
The Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith
Eurie, Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau Hendrix, Andrew, Toni and the Lagarra Family, Jamilia, all of Jax's little 1p36 buddies, Kristen S, Sandy and
Ryan, Betty Oster and Mikey D. xo
Thursday April 3, 2014
Jude still remains uncomfortable. Over the last few days they have increased both his Ativan and Fentanyl infusions. They also gave him multiple
rescue doses of those meds along with Phenobarb which is another pain medicine. Unfortunately we've have had no luck, Jude still seems very anxious.
His doctor started him on Precedex today. It's a drug that's normally used to sedate children for surgery; hopefully this will do the trick. His bowel looks significantly
better over the last several days, the swelling has come down drastically. His face and body are still very edematous so they started him on a diuretic around the clock
and will also provide Lasix for 3 days. In hopes this will help with the overall swelling. He's at fairly low settings on the oscillator, they're trying to wean down
his support in preparation for getting him back on the standard ventilator which should also help with his comfort level. Please pray everything works so we can
get Jude in a good place for chemo on Monday. Thank you for checking in and thank you for your prayers.
Good night xo
Please continue to pray for all of our other friends in need....
Mary Murray, AT, Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Jack M, Tori Lee, Lilly,
Visone's, Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith
Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria,
Kaya, The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau H, Andrew, Toni and the Lagarra Family, and all of Jax's little 1p36 buddies.
Tuesday April 1, 2014
Although things have been quiet, Jude seems to be less comfortable over the last few days. There are concerns that he may becoming tolerant
to his Fentanyl due to prolonged use. I’m anxious for the team to come up with a way to effectively manage his pain. Between the breathing tube,
the chest tubes, the silo, the broviac, the picc line, and his swelling; our poor little guy must be so anxious. It’s been over three weeks since he has
opened his eyes and almost two months since his intestines have been out of his body. It breaks my heart at the thought of my son being
uncomfortable, I would give anything to trade places with him. Jude may be incredibly small but thanks be to God that he has the fight of a Giant.
His Aunt Lainie compared him to David from the bible, Samuel 17. Jude being David and his cancer being Goliath. Then my friend Steve sent the
message below via email yesterday. I thought both were apropos...
"There may be times in our lives when God allows us to go through difficulties to enable us to eventually comfort others who are suffering. If this
is what God permits in our lives, then we can be assured we are able to handle it because he promises never to allow us to go through more than we
can bear. It may feel as if we’re never going to overcome the challenges we’re facing, but if we look back at the lives of believers in past centuries,
we see that God gave them the strength to overcome the “impossible.” Just like David faced Goliath...
I CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS ME- PHILIPPIANS 4:13
Goliath was a nine-foot-tall soldier from Gath. He bragged that he could beat any Israelite soldier but all the Israelite soldiers were afraid to fight him.
David was a young shepherd boy who believed in God. He said, "The Lord who delivered me from the paw of the lion and from the paw of the bear,
will deliver me from the hand of this Philistine." David took his sling and five smooth stones from the brook. Then he went to fight Goliath.
King Saul wanted to put his heavy armor and helmet on David. He also tried to give David a big sword, but David said he could not wear them.
He knew that his strength and protection came from God. Goliath cursed the boy coming out to fight him. David said, "You come against me with
sword and spear; but I come against you in the name of the Lord Almighty, the God of the armies of Israel, whom you have defied."
David threw a stone with his sling at Goliath. It hit Goliath in the forehead and the giant fell face down. Without a sword in his hand he struck down
the giant and killed him. David believed in God, and God helped him win over the giant.
I BELIEVE with the help of God and with your prayers, Jude has the strength to overcome 'the impossible'
Thank you all for your continued support. xo
Tonight our friends Danielle, AT, Keya and Beau need special prayers!
Please continue to pray for them and all of our other friends in need....
Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Jack M, Tori Lee, Lilly, George, Javier, Caleb,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith Family,
Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria, Kaya,
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning, Beau H and Andrew.
Monday March 31, 2014
With the exception of two very special visitors, a quiet weekend it was... Jude has been slow and steady since Friday. They still consider him
critically ill but in comparison to the last three weeks he's been relatively stable. Today Jude started his second week of the third round of chemo.
So far, so good. Please pray Jude stays strong and we continue to have positive results.
Saturday March 29th, 2014
It was a quiet day and in the current scenario, that's a beatuiful day. I hope yours was too.
I thank God for today. I thank you for your prayers.
Good night, God Bless...
Friday March 28, 2014
Happy Friday! No major events to report, thank God. Although Jude is still very sick he had his first good day in a while. His intestines are
slowly reducing in size, his numbers have stabilized and he is looking a little less edematous. We still have the issue with marks on the intestines
but his doctors don't think they look necrotic. They tell me not to worry, there's nothing that we can do right now anyway. Although it's an eventful
weekend for our extended family, we are hoping for a quiet weekend with Jude. Please pray for the same. Happy Birthday to Uncle Darren and
Cousin Ryan, wishing Sarah good luck at her cheer competition and best of luck to Cousin Ed at the National Scholastic Wrestling Tournment.
We miss you all more than you could know.
Mb xo
Please continue to pray for Jude and all of our friends...
Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Jack M, Tori Lee, Lilly, George, Javier, Caleb,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith Family,
Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina, Kristin, Cayden, Victoria
The Bohuk family, The RYAN family, Marc, Michael, Daniele Bruning and Beau H.
Thursday March 27, 2014
It's been a fairly quiet day for Jude. There's serious concern with his intestines, they are still extemely enlarged and today
they have turned gray and dusky. At this point, there is nothing that can be done except to to keep a close eye on them. My little
love continues stay strong, his small body has been through so much but thank God he keeps fighting hard. When ever I get tired
and weak his strengh inspires me and keeps me going. Although this road has been so difficult I would never change a thing.
These two tiny babies have brought the greatest love into my life, more than I could ever have imagined. I'm blessed to be a mom
and so fortunate to have a child that has united so many people together in prayer. I thank you all for keeping up to date and praying
for my son. I also want to say a special thank you to Kristin Macik Junia for the St Peregrine Medal and beautiful wood cross from
Bethlehem. I will keep this close by Jude always, I know it will bring him the same luck that it brought to you. Thank you to Jennifer
Bosco for the spiritual braclet, I absolutely love it! Thank you to Aunt Maura for the yummy candy apples, they made Jude's doctors
and nurses smile and when these wonderful people are happy I know the "apple of my eye" will be well-taken care of!
I hope you all have a good night and here's to a great tomorrow.
Love,
Mb xo
Please continue to pray for Jude and all of our friends...
Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Jack M, Tori Lee, Lilly, George, Javier, Caleb,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith Family,
Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia, Zachary. Selina and Kristin.
Wednesday March 26, 2014
The last few weeks have been very challenging for Jude. It seems like one issue is fixed and something else pops up. On Monday
they untied the silo which helped with the blood pressure, heart rate and plural effusion but since then his intestines are extreemly
swollen filling up the entire silo bag. I am hoping that the latest issue is due to his bowel being manipulated so much over the last 9
days, surgeons beg to differ. In this case I think MOM is right! Jude had chemo on Monday which went ok. This is the first week that
urine output is actually better since they gave the Vincristine. Yes, I said urine output is picking up, thank God. I'm hoping that this
infection is out of his system and he just does better from here on out. Please keep the prayers coming in.
Thank you and Good night,
Mb xo
Monday March 24, 2014
It was another long night for Baby Jude. Throughout the night his heart rate was dropping extremely low, blood pressure continued to rise and an x-ray
showed that Jude's Plural Effusion had come back on the right side of his chest. On top of that, his silo popped off for the 8th time. All recent symptoms
seem to be a reflection of the latest procedure. After rounds this morning the neonatologist and surgeons decided to reverse the silo tie in hopes that will
help. During conversations, the spots on the intestines had come up again. We are now getting infectious disease to take a look because no one
else knows what to make if these marks. In hopes everything is ok so we can return his intestines back into the abdominal cavity soon. There
were talks of delaying chemo today however we will definitely move forward, I’m waiting on oncology now. Hoping for a better night tonight.
Thanks for your support, love and prayers. xo
Sunday March 23, 2014
Jude's issues still remain, in addition we are dealing with high blood pressure and heart arrhythmia. Although his kidneys are still having
problems they have decided to move forward with chemo tomorrow. They are concerned about this tumor and although there are risks with
chemo and kidney function, they feel the benefit outweighs the risk. Hoping tomorrow is a brighter day for Baby Jude. On a positive note,
it was a great night for Little Joey Marchese. His new liver arrived at 1 a.m. and they did transplant number two. Although the next few days
will be a waiting game they feel optimistic that little Joey's surgery was a success. Please keep Jude, Joey and all of our friends in your prayers.
On the topic of prayers, thank you in advance for praying during tonight’s Universal Prayer for Jude. I believe that's what’s keeping my son
strong. It's amazing not only to see the love and support of so many adults but also to hear about so many children joining in prayer. My Nephew
Frankie and his cousins put up a prayer site for Baby Jude (#prayforjude) on Twitter. It's my understanding that so many kids are spreading
the word! Thank you to Laura, Mary, Emily and Frankie for starting this page. Below are a few other notes, pictures and messages from Jude's
cousins and friends who are also praying for him, I thought I would share! It's so amazing to have so many prayers for my son but the power
of prayers from all of these children are really extra special! Thank you all and God Bless xoxo
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith Family,
Wanda, Hannah's Family, The Haynes Family, Caden, Suzi, The children and families of momcologists unite, Linda A , Nurse Christia and Zachary.
Saturday March 22, 2014
Earlier in the week we noticed dark spots on Jude’s intestines which concerned the neonatologist. Surgery came to check but didn’t
think the spots looked like necrosis or dead tissues therefore they’re just going to watch it over the next several days. What did
concern them is how much fluid and air were in the silo bag especially since we had it replaced two times this week. They decided
to treat Jude the way they would treat a patient with Gastroschisis. Currently Jude intestines are in a suspended silo bag. The
suspension normally allows gravity to slowly return the intestines to the abdominal cavity. In Jude’s case this didn’t happen so the
plan is to aid in the return of the intestines by sequentially tying the end of the bag almost like you do with a tube of toothpaste.
They will closely monitor Jude and gently squeeze the pouch every day until almost all the intestines have returned to the abdomen.
When they are all back, they will take Jude in for surgery to close up the 6 cm opening in his little belly. Jude’s urine output is still
very low. We are hoping it slowly pics up so we can get the chemo in him. Prayers that we have a good week and that everything starts
looking up. We also need special prayers tonight for Jude’s little friend Joey. As of last night they didn’t seem to think Joey needed
A new liver however today things changed due to issues with the current donor liver. The good news is that they found a new liver
and will have surgery as soon as they can get it to CHOP, maybe even tonight. Please pray for Joey, his family and for all of our
warriors in need! Thank you and good night!
Mb xo
Friday March 21, 2014
I spoke too soon on Wednesday. Over the last 24-36 hours Jude has taken a turn for the worse. His renal function is still an issue, respiratory
function is unstable and he has become much more edematous. They did both blood and urine cultures today to ensure he doesn’t have another
infection brewing, we should get those results in the next few days. Yesterday Jude and I received a visit from our close friends Seth and Margie
Grumet from STOMP THE MONSTER (stompthemonster.org) My deepest appreciation to Seth, Margie and he board for thinking of us during this
difficult time. Unfortunately during Seth and Margie’s visit we had yet another mishap with the silo. Although it was just fixed on Monday it popped
for the 7th time. Once again Jude's intestines were out on his stomach and the silo had to be replaced. This time surgery replaced the current silo with a
larger one in hopes this will fix the issue. While looking at Jude's intestines the surgeon noticed what they think is venous congestion. At this point they
are just going to watch them. I can’t wait for the day that they put my sons intestines back in his little body. Although I have gotten used to seeing this
happen, I worry that all of the manipulation to his little organs will cause damage. Oncology was in today and advised that we will hold off on chemo
until Jude’s renal function picks up. At this point it we’ll just wait and see. Keeping my fingers crossed this infection clears up soon, there’s no new
infection and our little warrior gets back on track so we can administer the wonder drugs!
Jude’s little friend Joey is FIGHTING hard and isn't giving up at all!!!! Yesterday, they put Joey back on the transplant list however today the
overall feeling is optimistic for the liver he has in him.Please keep your prayers coming for Baby Jude, Joey and all of our friends in need!
Thank you and God Bless xo
Wednesday March 19, 2014
Between Joey and Jude the last few days have been very scary. Thank God, Joey is holding his own yet still very critical. He had a few head
seizures over night and the levels of his liver are not where they should be. Respitory status is unstable. It seems that a portion of his new liver
is damaged and we are praying it will rejuvinate. Please continue to pray that Joey's little body accepts this new liver. Please also pray for his
family's strength during this difficult time. My little guy has been in kidney failure for over a week now. Over the last 7 days the doctors have
told me that 'THEY' are keeping Jude's body stable. Finally today they said Jude is showing clinical improvements. Although urine output in
still very low, renal function seems to be getting better and Jude is starting to look like himself again. Chemo which was supposed to be
administered today but was delayed for the second week. In hopes we can get our warrior back in fighting shape so he can continue to get
the treatment he needs to shrink this tumor. Your prayers are truly appreciated!
Continued prayers for our friends...
Baby Joey, Baby Jax, Christopher Prefer, Harper, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Jack M, Tori Lee, Lilly, George, Javier, Caleb,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina, Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith Family,
Hannah's Family, The Haynes Family, Caden, Suzi and Nurse Christia.
Jude Edward Lavery Walz- 4 months today :)
Tuesday March 18th
It was a very long night for baby Joey. Thank God after more than 12 hours Joey came out of surgery with a new liver.
His day has consisted of ups and downs. The next few days are crucial. Please continue to pray for Joey and family
they need your prayers. As far as Jude, he is still in critical condition. Kidneys are still considered in failure. Jude has lost
quite a bit of fluid over the past week. We are increasing his fluid intake in hopes that assists with kidney perfusion. Please
continue to pray. Thank you xo
Baby Joey Update...
Little Joey just went up for surgery, the kidney was a match! Surgery should take 8 hours, I will update when I know more.
Please please please pray for our little friend. Sending so much love to Joey and the Marchese Family.
Monday March 17, 2014 / Jude's first St Patrick's Day
Happy St Patrick’s Day! As it turns out today has become a VERY lucky day. We just received the fantastic news that they have found a liver for Jude's friend
Baby Joey. They are in the process of operating on the donor and they are preparing Joey for this transplant. Jude, my family and I have been so blessed with so
much love and so many prayers. Today I ask everyone to please send their blessings to Baby Joey. I ask you to pray that surgery is a success, this liver is a match
and little Joey goes on to live a LONG HEALTHY LIFE! I truly believe God has such special plans for all of our little warriors! I will make sure to keep everyone updated
Thank you so much for your support! God bless xoxo
Mb xoxo
PRAY FOR BABY JOEY (see our little "lad" below, Happy 1st St. Patrick's Day Baby Joey)
St Patrick's Day Continued....
Jude has had a busy morning. Aside from praying for our little friend Joey we had another mishap with the silo. Surgery was in to look at his bowel and while they were
changing his dressing his intestines came out for the 6th time. Luckily the surgeon was right there so they addressed things pretty quickly. We still have issues with
Jude’s kidneys, no urine output. We need kidney function to pick up very soon. PLEASE PRAY FOR PEE! Other than that everything is status quo...
Wishing you all a very Happy St Patrick’s Day filled with luck and love!
Thanks again for all of your prayers. xoxo
Sunday March 16th 2014
Baby Jude's sugars have become more stable, potassium is at a good range and although Jude’s still breathing through Oscillation Ventilation
he's at a better place with regards to respiratory function. Jude is acidotic, continues to have issues with his kidneys and remains in critical status
however he has been getting stronger every day. As we approach 8 p.m. I would like to thank everyone in advance for joining in tonights Universal
Prayer. When we first learned of Jude’s diagnosis odds were certainly against us. Jude has an a very rare cancer with an extremely poor prognosis. Over the last
7 weeks I have witnessed such a strong sense of faith and love. Although this week has been difficult last Tuesdays results proved that we should never
underestimate the power of prayer. Tonight as we began to pray, I want to thank everyone for your love and support.
I BELIEVE that God will continue to listen to our prayers.
Thank you from the bottom of my heart!
Saturday March 15, 2014
While trying to maintain Jude's potassium levels with insulin his sugars have dropped extremly low. They have now taken him off the insulin and are working
to maintain potassium and glucose. Kidney function is still an issue. Please pray for our little warrior. He's certainly causing quite a stir here at Chop and needs
as many prayers as you can send! With the help of God we will have better news tomorrow.
Friday March 14, 2014
The last few days have been really difficult but Jude has managed to keep strong. His potassium levels were extremely elevated last night however they administered
insulin and were able to bring them down to a normal range throughout the day. Jude still has low urine production but being that his potassium levels are normal they
are holding off on talks of dialysis. Although urine output is low, Jude has lost quite a bit of fluid from the chest tubes and the silo. At this point they are working to manage
his fluid balance and electrolytes. We are keeping our fingers crossed that our little warrior continues to get stronger every day, hopefully tomorrow will be a better day.
Thanks for checking in and most importantly THANK YOU for your prayers.
Good night!
Thursday March 13, 2014
We are overwhelmed by everyone’s love, support and prayers. It was a very long night but thanks to God Jude is still fighting hard.
The bilateral chest tubes that were placed relieved the fluid in Jude's lungs. Removing the excess fluid also helped with Jude's respiratory
issue. Jude's kidneys are still in distress however they have determined the type of infection so they will now tailor the meds to his specific
condition. In hopes this helps with urine output. If urine output does not get better they are speaking about dialysis. We are just taking it
one day at a time...Please continue to pray for Jude and all of our other friends in need of so many prayers. Thank you SO much!~
Continued prayers for our friends...
Baby Joey, Baby Jax, Christopher Prefer, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Harper, Jack M, Tori Lee, Lilly, George, Javier, Caleb,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa, The Smith Family,
Mr. Jacoby, Fran, Jude, Mr. Mejias and Mike.
Wednesday night update
Jude has an infection which caused a pleural effusion. He went into renal and respiratory failure tonight.
He just had bilateral chest tubes placed between his ribs and into the space between the inner lining
and the outer lining of his lung. We are hoping that this will help with the fluid buildup in the chest.
They are giving him dopamine in conjunction with steroids and diuretics to try to help the kidneys.
Potassium level is dangerously high, also hoping tonight's treatments will help. In the meantime, they
are trying to determine the cause and type of infection. Your prayers are needed and appreciated.
With love,
Marybeth
Wednesday update
Nothing seems to be working today. Jude has gone into renal and respiratory failure. Please please please pray hard.
Wednesday March 12, 2014
After we received the good news yesterday they also made a discovery that Jude has a plural effusion which is fluid collecting in the
membrane or lining of the lung. This can be a complication from multiple things however they believe the main cause is an infection.
Jude has become critically ill overnight and has gone into kidney failure. Please pray.
Tuesday March 11, 2014
THANK YOU, THANK GOD, TUMOR SHRUNK!!!!!!!!!!!!!!
Monday March 10, 2014
There was a mistake with the scheduling Jude's cat scan. It's now tomorrow at 8:30 a.m. instead of today. I'm trying to look on the bright
side... One more day of prayers, one more day for this tumor to shrink. On a positive note, Jude looks great this morning. Thank God, over the last
week he seems to look better every day. I will update the page as soon as we learn results tomorrow. In the meantime, my cell phone broken so
I apologize in advance if I am returning texts, I'm not seeing them. I also have not been able to return in box messages on Facebook however I do
see those messages and I truly appreciate each and every thought and prayer. Everyone's love and support has been such a comfort during
these difficult days. It's been amazing to see so many people praying for Jude, we will always be grateful. xo
Continued prayers for our friends...
Baby Joey, Baby Jax, Christopher, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Harper, Jack M, Tori Lee, Lilly, George, Javier, Caleb,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa and
The Smith Family.
Sunday March 9, 2014
I want to thank everyone for checking in. Jude’s still doing well, thank God. Tomorrow’s an extremely important day as Jude gets his first cat-scan
at 8:30 a.m. to determine if the chemotherapy is working. Tonight, I ask that everyone to join in prayer at 8:00 p.m. and ask the Lord to heal my son.
I pray that Jude will be rid of this cancer and return God’s love throughout a long healthy life. Please pray for positive test results.
Please pray for my miracle! I thank everyone from the bottom of my heart.
With love,
Marybeth xo
Saturday March 8, 2014
Thank God my little peanut is still doing great. He's becoming less swollen every day and he’s really starting to look like himself again. Doctors are weaning
him off of his pain meds (Fentanyl) and he'll just be on the Ativan to relax him... so far so good. His gases have been great so they are also weaning down the vent.
I found out today that they have decided not to wait on the cat-scan, they are now moving forward on Monday morning at 8:30. Please say prayers
that this treatment is working to shrink Jude's tumor. Thank you so much for your continued love and support.
Enjoy your Saturday. xo
Thursday March 6, 2014
Jude's been doing great over the last few days. He had his 5th dose of chemo yesterday which went really well. As usual his urine output is
low but I'm not concerned because his swelling has decreased dramatically over the last week. His weight is down from the highest which was
over 9 lbs to just under 5lbs. He's really starting to look like himself again and he seems so much more comfortable. He had an eye exam today
and the ROP that Jude had has subsided. God is good! Yesterday was a special day- we celebrated Ode's birthday along with Jude's first Ash
Wednesday. I'm so fortunate to have a beautiful son along with so much love in our lives. Sometimes in life blessings are in disguise and may
not always be apparent to us due to the hardships and struggles. Life isnt always the way we plan it to be but life is good... our life is good.
Thanks for praying for Jude and thanks for checking in.
Tuesday March 4, 2014
So much for uneventful days. They tell me everything with Jude is rare, uncommon and a mystery however I'm starting to see patterns.
On Monday's we always seem to have intestinal issues and on Thursday's my little guy has problems with his kidney's. Last night we
had to change the silo for the 5th time. I stayed up all night Sunday staring at his stomach because the silo looked the same way it did in the
past before it came off. Surgery came by a few times and told me that the silo was fine but unfortunately that was not the case. At
about 7 p.m. last night the intestines were back out of the bag. They placed them back and removed the air from the silo in hopes
this will address the issue. Dose five of chemo tomorrow, we have kept Jude on Hydro-cortizone to see if this helps with the low urine
output that normally happens after chemo. I was advised today that the cat scan may be delayed until the end of next week, I'm so anxious
for that day to come. Praying for positive results. Also praying extra for Jude's friends Mary, Jax and Joey tonight. Please do the same.
Thank you xo
Sunday March 2, 2014
Thank you to all that joined in Jude's universal prayer. We had a wonderful UNEVENTFUL weekend. Jude's numbers were stable,
his urine output is great and for the first time in 3 weeks he opened one of his eyes. We are hoping this cycle continues. Counting
down the days until Jude has his cat-scan (7), we pray this test will show tumor reduction. Please join us in our prayers, I also ask
that you pray for our other friends in need. Thank you for checking in.
Good Night xo
Baby Joey, Baby Jax, Addie, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Harper, Jack M, Tori Lee, Lilly, George, Javier, Caleb, Zachary,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa and The
Smith Family.
Friday February 28, 2014
A SPECIAL PRAYER TONIGHT FOR AMANDA ROSKO. COLLEEN, MY PRAYERS ARE CONSTANT!!!!!!!!
Today was a quiet day which in our new world is a good day. Although Jude is still very swollen and edematous all of his numbers looked good,
urine output is increasing and he seems to be comfortable which is more than we can ask for. The surgeon was back in today and adjusted the
silo to decrease excess fluid, he was happy with the way the intestines looked. Oncology came in to check on Jude and seemed pleased with all
of his numbers. They let me know that they intend on scheduling Jude’s next cat-scan for Tuesday March 11th. Please pray that this treatment is
working and the scan shows reduction in the size of Jude’s tumor. During their visit oncology informed me that Dr. Richard Wormer Jude’s
Attending Oncologist will be Jude’s primary physician. Jude has congenital infantile fibrosarcoma which is so rare it represents less than 1% of
all pediatric malignant tumors. Dr. Wormer specializes in pediatric sarcomas and is also involved with the world’s largest childhood cancer research
organization. We have been so fortunate to have a variety of amazing doctors help treat Jude but knowing that Dr. Wormer will follow Jude so closely
is extremely comforting. Thank you to Dr. Denehy for making this introduction. Speaking of “RARE” cancers a huge thank you goes out to my
nephew Luke and Miss O’Hara’s 4th grade class at Manasquan Elementary School. Everyone in Miss O’Hara’s class wore jeans today to promote
Rare Disease Day and to show their support for Baby Jude. I’m so excited to read your cards to Jude, it was such a special gesture. I also want to
thank Gina Onesti, Amy Smith and Kathy Campbell for traveling to Wilmington to pack up our condo. Kathy flew to NC and drive my car home.
Over a 24 hour period Gina and Amy flew to NC, rented a truck, packed up, cleaned and drove the rest of our belongings back to NJ.
Throughout this journey so many people have gone above and beyond to support my family. We even had a few VERY special friends from
Wilmington fly in to comfort us during this difficult time. It’s been such a reminder of how lucky we are to have such a HUGE support group and so
much love in our lives. Thank you all for your kindness, support and prayers! We are truly blessed.
PLEASE CONTINUE PRAYING FOR ALL OF OUR SPECIAL FRIENDS AND LOVED ONES : Baby Joey, Baby Jax, Addie, Ode, Mary, Bob, Christian, Corben, Christy, Mrs. K, The Vargas's, Danny, Jade, Scarlett, Harper, Jack M, Tori Lee, Lilly, George, Javier, Caleb, Laura, Jolene, Calder, Don, Beau, Angel, Connie, Barrett, Nathan, Hannah, Qwendelyn, Christopher, Margie, The Visone's, Richard (Scott) and Amanda & The Rosko Family.
Thursday February 27th, 2014
Jude has had some struggles over the last few days. We had another ‘intestinal incident’ earlier in the week, intestines came out of his silo bag.
Although doctors say this is uncommon it’s becoming commonplace for my son. The first time I saw his intestines lying on his stomach I almost
passed out. The second incident I felt nauseous and the third time I was surprisingly calm. It’s amazing what someone can get used to so
quickly. He had another procedure to fix this issue which caused more swelling, however they tell me his intestines will be ok and swelling
should go down. Since Sunday night Jude’s hemoglobin levels were gradually decreasing. He had blood transfusions every day this week and
until today the donor blood did not help. At first we were concerned that the blood loss was due to the tumor however after repeated blood tests
his numbers have improved which hopefully indicates that is not the case. Yesterday was his 4th dose of chemo, 2nd cycle. As usual his urine
output decreased so they gave him Hydrocortisone and Lasix which appears to be helping. The poor little guy is so swollen its heartbreaking
to see him like this. Please continue to pray that this treatment will dissolve Jude’s tumor. I believe God is listening to our prayers.
Tonight I also ask everyone to say a special pray for our friend “Baby Joey”. Joey was born 3 months premature and like Jude was diagnosed
with cancer. Joey’s currently 6 months old and has been fighting to survive his entire life. He’s been on the liver transplant list but
unfortunately has not had much luck. They tested Joey’s mom and Dad this week but sadly they are not a match. They were told that instead
of a child’s liver they can also use a section of an mature liver from an adult between the ages of 20 and 40 whom has a O positive blood type.
We are praying that Katie and Joe can find a match for their son. Please join us in our prayers.
Thank you for your support.
PLEASE CONTINUE PRAYING FOR ALL OF OUR SPECIAL FRIENDS: Baby Joey, Baby Jax, Addie, Ode, Mary, Bob, Christian, Corben, Christy, Mrs. K,
During the last few months I have experienced so many emotions. Joy and deep sadness…loving and grieving…bonding and letting go.
The loss of my son Thad has been the most devastating experience and by far the hardest time in my life. At least I thought it was… the day that
I was supposed to lay Thad to rest became the day Jude was diagnosed with a mass 1/3 the size of his little body. As you can imagine the shock
and disbelief of Jude's diagnosis combined with the grieving of his twin brother has been overwhelming. I can honestly say that I would not have been
able to go on the way I have without my faith combined with the love and support of family and friends. Over the last few months so many people
have stopped everything in their lives to help us get through these trying days. Acquaintances have become like family members, strangers have
become close friends. Ironically the most horrific time in my life has also become the most special. The outpouring of generosity shown by so many
has been immense. Last night’s universal prayer for my son was another example of that support. I truly believe in the power of prayer and knowing
that so many people came together to pray for Jude's healing was surreal. The Lord God Almighty hears the prayers of His children. He commands
us to pray, and He promises to listen when we do. “In my distress I called to the LORD; I cried to my God for help. From his temple he heard my
voice; my cry came before him, into his ears” Psalm 18:6. Words can never fully express my gratitude to all that are praying for Jude.
I look forward to the day that I can let you all know that God has answered our prayers!
With love ,
Marybeth
Sunday February 23, 2014
I want to thank The Imperale's, The Deo's and Weikel's for starting the universal prayer chain for Jude. Tonight at 8:00 p.m. there
will be a universal prayer being said on Baby Jude's behalf! Thank you to everyone joining in prayer for my son.
We will be FOREVER grateful!
With love,
Marybeth xoxo
We know our prayers are heard but maybe if we are all pray for Baby Jude's healing at the same time our message and request will be heard from a powerful voice vs our independent efforts. Please join us this Sunday, February 23 at 8pm (EST) as we pray (from wherever you are) for Baby Jude's healing. Feel free to pass this event along to your friends and family!
Our life has become like a rollercoaster with ups and downs. Wednesday was great and yesterday not so much. Jude had been on hydrocortisone
due to his low blood pressure. He was weaned off on Tuesday and unfortunately we hfad another incident with low blood pressure which in turn
caused issues with low urine output. They tried catheterizing him last night in hopes that would help but no luck. Although doctors were hesitant
about putting him back on the steroid they felt that was the only option. The good news, after a day with no urine our little guy is going strong again.
Output is at a normal level tonight. Jude's breathing well, he's still on the vent but they decreased the level today from 20 to 15 and he's breathing
at 21% oxygen which is great. Lungs and kidneys look better this week since they increased the size of the silo bag. Prayers still needed for our
little fighter. This is going to be a long road but I know he can do it.
PLEASE CONTINUE PRAYING FOR ALL OF OUR SPECIAL FRIENDS: Baby Joey, Baby Jax, Christian, Corben, Christy, Mrs. K,
The Vargas's, Danny, Jade, Scarlett, Harper, Jack, Javier, Caleb, Laura, Jolene, Calder, Don, Beau, Angel, Connie, Barrett, Nathan and
Hannah.
Wednesday Feb 19th 2014
Today was a great day. Jude is 3 months old, his numbers were right on target and our little warrior completed week 3 of chemo. So far, he's
taking very well to the treatment, thank God he's a fighter. I have a funny feeling that Baby Jude is going to follow in some incredibly strong
footsteps. Thank you cousin Luke for your beautiful letter, metals and holy oil. I read Jude your letter every day. I know Jude will conquer cancer
just like you did. Jack Mcloone, your necklace is hanging right over Jude’s head. He's too small to wear it but I will make sure to keep it right by his
side until he is healthy enough to meet you in person to give it back. I also use your holy water daily, we love everything you sent over and know it
will help Jude battle cancer the same way it helped you win your fight! Seth, Tracey and our friends at Stomp the Monster, thank you very much for
everything. I have the angle right by my side. I look forward to hearing your story Seth, I know Jude will STOMP THIS MONSTER like you did my
friend! Anthony and Cinda, I will wear my St Jude and St Peregrine medal always, it means so much to me! Alexa and Max, I’ve got your oil from
Greece on Baby Jude. I think it will make him so strong just like it made you Alexa. Over the years we have known some real warriors who battled
cancer and won. You are ALL an inspiration to us and I know Jude will win this fight just like you did. We look forward to the day when we can
celebrate Jude’s recovery with each and every one of you. That day will come...
Thank you for checking in! Good night and God Bless xoxo
Tuesday Feb 18th
Sorry for the delay with updates, it’s been overwhelming. Over the weekend Jude’s blood pressure got so low that they gave him an increased dose
of Dopamine and hydrocortisone both suggested byJude’s Aunts who work in the medical field. (THANK YOU AUNT COLLEEN AND AUNT BARB)
Together these drugs not only helped to increase the blood pressure but also helped to profuse Jude’s kidneys and get the blood flowing which in
turn increased Jude’s urine outputs. Thank God Jude is now peeing like a champ. J
Everything seemed to be going really well and swelling started to go down however last night there was an accident and Jude’s silo
ring popped out which caused his intestines to come out thru that defect. They surgically addressed this issue, increased the size of
the silo bag and now have Jude stable. Although they tell me everything is ok it’s so scary to see your sons intestines in a clear bag
outside of his body. He’s much more swollen again today due to last night’s procedure. In hopes we can shrink this tumor quick and
they can put our Sweet Baby Jude back together.
Jude’s 3rd round of chemo starts tomorrow, one of my new favorite medicines Vincristine! Please pray hard that this chemo does the trick.
On that note, I want you all to know that I truly appreciate every prayer. I’ve been advised multiple times over the last few weeks that
there may be nothing that can be done for my son. I heard those words again on Friday when they thought that Jude’s kidneys were shutting
down. As a mother I feel so helpless, you feel like your world will just end. The only thing that I can do is turn to God and I really believe that
HE is listening to all of us.
Over the last few months we have been so fortunate to have so many people praying, sending love and positive energy our way.
We are blessed to have so many people spreading the word. Jude has had over 8500 hits on his website in less than a week.
There are Prayer chains, Churches, Synagogues, Schools, etc. all praying on Jude’s behalf. There could never be any words that
can describe how much every thought and prayer means to us. Please continue to pray for my sweet son.
Tonight I also ask that you pray for some other really special friends… Baby Joey, Baby Jax, Christian, Christy, Mrs. K, The Vargas's,
Another tough day. Jude’s having critical problems with kidney function due to compression from tumor on the kidneys. There has been no urine output for over 16
hours and blood pressure is not stable. Renal issues are causing him to have excessive accumulation of fluid in his tissue which is why he is so swollen. They are
giving him a higher dose of dopamine and also hydrocortisone. The neonatologist, oncologist and nephrologist will be here first thing in the morning in hopes to come
up with additional game plans. Jude is critical, please pray we get through this. Prayers are needed more than ever...
(Judes first Valentine from cousin Izzy. We love you Iz)
2/13/14
Jude is still recovering from surgery. He has elevated uric acid levels, they gave him bicarbonate which should help. Doctors are very nervous that the tumor is
compressing against the kidney. They were hopeful that the surgery would take some pressure off but no luck yet. They said a drug called Vancomycin which was
used for the treatment of his active MRSA infection may also be an issue with kidney function .Unfortunately he has an excessive accumulation of fluid in his tissue
and his urine output is still real low. We need to figure out how to control this issue with Jude being edemas and hope the kidneys start to function better. The last
few days they gave Jude an iv with albumin than a lasix flush however that has not seemed to treat this problem. Jude had his 2nd dose of chemo yesterday, he
took it like a champ. Please pray this works. My son has been through so much, I just want him to have a good, healthy normal life.
Prayers are truly needed and appreciated.
2/12/14
Thank you Cousin Halie. We love you xo
2/11/14
Uncle Ed has Baby Jude and Mommy "up in lights" in Time Square... now even more people will be praying for him!!!
2/10/14
Aunt Colleen Update... try They called in a nephrologist, a kidney specialist, to try to find out why Jude's body is so swollen and his urine output is so low. The surgeons decided that the pressure in little Jude's belly was too much so they did surgery today and opened up his incision that they had repaired the other day. They call it a "silo". They put a clear bad over it to allow more room inside his abdomen for blood flow to his organs, especially his kidneys. So far only a small amount of fluid has come out. His vancomycin levels are to high today so they are holding that antibiotic but are keeping him on the Zosyn. He's getting a low dose of dopamine to keep his blood pressure up and to help his kidney function. He now needs calcium as his levels are to low. They placed an "A" line in him but had to take it out as it stopped working which means it will be harder to get blood from him for testing. On the bright side... all of his other cultures so far have not grown anything. Little Jude, our dear sweet boy, hold strong. You are small but you are mighty!
"The people who trust the Lord will become strong again. They will rise up as an eagle in the sky; they will run and not need rest; they will walk and not become tired." Isaiah 40:31
2/9/14
Aunt Colleen Update... Jude continues to be very swollen throughout the tissue of his entire body (anasarca) due to third space fluid shifting, where the fluid comes from inside his cells to the space outside. They are giving him platlets, fresh frozen plazma and blood to increase his albumin/protein level and draw the fluid back into his cells. They believe that this will also allow his urine output to increase. They have decided that he doesn't need a diuretic such as Lasix as he doesn't have too much fluid in him, it's just in the wrong place. Also the tumor is "using up" a lot of his blood volume and depleting it from the major organs. His electrolytes remain good and his pH balance has improved with the modification of his respirator and the sodium bicarb. The echo of his heart didn't show any congestive heart failure or issues. This kid is a wonder. Keep fighting sweet baby Jude and hang in there Mommy!
2/8/14
Aunt Colleen update... well it looks like it's not peritonitis (thank goodness). They think maybe that his red belly was a reaction to medication. All of the tests have come back "ok" so far. We are still waiting on the wound cultures but the respiratory culture has come back positive for MRSA. He seems asymptomatic but they are treating him with two antibiotics, Vancomycin and Zosyn. He had several de-sats, episodes of low oxygen, today so they changed his respirator setting from pressure to volume and he seems to like that much better! He is still swollen and so is getting a diuretic, Lasix, to remove the extra fluid from his little body. He is an unbelievable fighter. Please pray for him and his very special Mommy!
2/7/14
Mommy is busy watching over sweet Jude so Aunt Colleen is giving the update today... Jude's amazing Mommy noticed that his belly was red and told the doctors. They are doing testing to see if he has an infection in his belly called Peritonitis. Mommy also noticed a blister on his skin that they cultured to check for infection. There is also a possibility that he has a respiratory infection, possibly MRSA. They decided to start two IV antibiotics just in case. The good news is that his electrolytes are normal (sodium, potassium, calcium and phosphate) which is very important for his heart. Jude has an IV of morphine running just in case he hurts. He is being fed hyperalimentation or TPN with lipids (fats) through his IV to give him the nutrition he needs. His breathing is still being helped by the ventilator. This little fighter has had to battle everything imaginable - more than most adults have to experience in a lifetime. Please pray HARD that he stays strong and gets better!
2/6/14
The CHOP Doctor called Jude "super human" today as he is such a fighter. He continues to hold his own and is truly our miracle warrior!
2/5/14
Our sweet baby Jude is holding his own. His first dose of chemotherapy has been given. It's the same chemo (vincristine) as his cousin Luke was on a few years back when he had leukemia. Jude's calcium, potassium and sodiums are getting closer to normal. His blood gases are looking good. Bone marrow biopsy is negative! He is such a fighter. Keep praying hard as our little warrior fights this battle and wins just like his big cousin did!
2/4/14
Jude has had a major setback today. His tumor is growing so large that it pushed his intestines through his biopsy incision. He had emergency surgery this afternoon. Potassium, sodium and calciums are at an extremely dangerous level. Chemo ...has been delayed. Heart is being monitored. I beg you to pray for Judes healing. Please pray they get this chemo in as soon as possible and it begins Judes healing process. I need my son, I need your prayers.
2/3/14
Jude's calcium is high which can effect his heart so the doctors are going to give him some medication to try to bring it down. They decided not to try IV fluids again as the last time it overloaded his system and they needed to give him Lasix, a diuretic, to get the fluid out of his body. The doctors think that the tumor is effecting his hormones and that is causing his calcium to go high. Good thoughts and prays needed as we look to starting his chemotherapy tomorrow.
2/2/14
Jude was diagnosed yesterday with a very rare cancer, Infantile Fibrosarcoma. Jude’s tumor is wrapped around the aorta which makes it inoperable. The only option for treatment is chemotherapy which is successful in 1 out of every 3 to 4 patients. PLEASE PLEASE PLEASE pray that this treatment cures my son of this horrible disease. Thank you xo
2/1/14
The biopsy has come back and the doctors say it isn't a Neuroblastoma but Infantile Fibrosarcoma. The cancer is wrapped around baby Jude's aorta and all of the vessels to his heart, lungs, kidneys and liver. Due to the size of the tumor, surgery is not an option right now. The plan is to start a course of chemotherapy on Monday. Jude is resting and remains on the ventilator to help him breath and get stronger. He is being fed intravenously through his central line (Broviac) so he can get the nutrition he needs. We are still waiting on the bone marrow biopsy. Please pray strong and hard for our little miracle warrior!
1/30/14
Mom met the Vice President today. He's praying for me too. Please also pray for his son Beau xo
1/29/14
Baby Jude is having a rough time recovering from yesterday's surgery. The biopsy shows that Jude does have cancer however it is not a neuroblastoma which is what was originally suspected. We are waiting for the biopsy results to determine the type of cancer. Please pray that this is curable and that we can get my precious son healthy again, I need him. Thank you very much for all of the good thoughts, love and prayers. We’re really lucky to have so many special people reaching out.
1/28/14on his way to surgery...
Good Luck Sweet Pea. Mommy loves you xo
1/28/14
Later this morning Jude is going into surgery to have a biopsy of his tumor, bone marrow aspirations and a Broviac catheter placed into his chest. These tests should give us more answers as to Jude’s condition. Today I ask all of my friends... and family to pray so hard for the most positive outcome. Both Jude and his brother Thad were named after St Jude Thaddeus (and Grandpa and Dr D) so I have added that novena below. Please pray that my son wins this fight and lives a long, happy, healthy life.
1/26/14
Resting on mommy's lap after a long night
1/25/14 10:15 p.m.
Jude arrives at CHOP
1/25/145:00 p.m.
Jude leaves his friends at New Hanover Regional Medical Center and takes his first plane ride to Children’s Hospital of Philadelphia
1/24/14
There is a large mass in Baby Judes abdomen. Jude and I are about to be airlifted from the Wilmington NICU to CHOP. We hope to have more info soon. Thank you for your continued prayers, please keep them coming
1/19/14
We need extra prayers for Sweet Baby Jude, his calcium is extreemly high but we can't figure out what is wrong!
Genesis 21:14 - 20 God hears the prayers of children
