This is Jacquelyn here again. Marybeth hasn't written because they are enthralled with beautiful baby Carrington. I will tell you she wrote a post in the note section of her phone, but she accidently deleted it and has been unable to retrieve it.
She did post this to Facebook:
“I've been meaning to write on the website, but I've been so enthralled with this beautiful little princess, I have not gotten to computer. In the meantime, our close friend Lauren who carried the baby is having a very hard time. While receiving the epidural, the Anesthesiologist punctured her spine. Unfortunately after multiple tries, they have not fixed. She was sent home yesterday, but was back in the ER last night. We were so blessed to have this beautiful soul carry CC. She's one of the sweetest people you'll ever meet. Everyone who knows her loves her. It breaks my heart to see her so uncomfortable after everything she has given to us. Please pray that Lauren Flanagan Kelly is OK so that she can go home to her beautiful family. She needs your prayers.”
I didn’t really elaborate before on the specifics:
Carrington Grace Pritzlaff
June 7, 2016
9 lbs 3 oz, 22 inches long
Born at 4:35 p.m.
Marybeth, Ode, and CC left the NICU on Wednesday. Thank God all is ok. While at the hospital, they enjoyed 2 nights in their own room 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.
Please keep praying for Lauren. Everyone who meets her loves her, and we hate seeing her in pain. Just keep praying she gets back home to her beautiful family very soon.
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)
Children are a heritage from the Lord, offspring a reward from him. Like arrows in the hands of a warrior are children born in one’s youth. Blessed is the man whose quiver is full of them. They will not be put to shame when they contend with their opponents in court. (Psalm 127:3-5)
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. (James 1:17)
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.
MB says that Carrington is a giant compared to all the other babies and she looks like she could eat one of them! :) Her and Ode have a room right there, and Marybeth can stay with CC 24/7. She said this experience just adds to her story! Keep praying for her, Ode, and Carrington. I know you will!
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 Ode and I buried the boys, 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!
One of our angel friends is helping to carry her. We have been so blessed to have Lauren Kelly in our life. She will forever be apart of the family. It is so nice to have someone so loving to help your dreams come true. Lauren has been such a blessing to us, and we will be forever grateful to her and her little family for making this happen for us.
Over the last 9 months, I have gone to all the doctor appointments. I have seen my baby girl grow as the months have progressed. 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 friend 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! :)
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!!!!!!
A SPECIAL GIFT FROM A GREAT FRIEND. THANK YOU MATT ZOTAC
FEBRUARY 22, 2015 A Snowman for my angels
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
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.
Please pray for our friends: Joey Weikel, THE BORG fAMILY, Jude Cozzliono, The family of Missy MALONE, MARY Murray, Bob Howard, The Marchese Family,
Richard (Scott), Amanda & The Rosko Family, The Mason Family, Ron, Dina Sophia, Maria, Ari, Grace, Gene, Abby, The Fleming/Velecamp Family, Melissa and The
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 ,
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!
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!
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)
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.
Thank you Cousin Halie. We love you xo
Uncle Ed has Baby Jude and Mommy "up in lights" in Time Square... now even more people will be praying for him!!!
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
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!
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!
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!
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!
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!
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.
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.
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
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!
Mom met the Vice President today. He's praying for me too. Please also pray for his son Beau xo
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
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.
Resting on mommy's lap after a long night
1/25/14 10:15 p.m.
Jude arrives at CHOP
Jude leaves his friends at New Hanover Regional Medical Center and takes his first plane ride to Children’s Hospital of Philadelphia
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
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