So I have not blogged in quite a while and I am upset and sorry for not being able to. Our blog was attacked and then took a while to get restored. Howeverwe are back up and running. Thank fully in time for me to put share some of my life experiences.
My wonderful husband and I have had a difficult time trying to have a family. For some people it is easy, others like us not so much. This is our seventh pregnancy. We have 2 beautiful children on earth, 4 born to heaven and I am currently 18 weeks pregnant and am feeling terrific! Even my own journey has not prepared me for the past 2 months. ( I will go more into my own journey in another post but I want to share how deeply affected I am by the Matthews story).
I am in a MOPS Group at my local church and have had the wonderful pleasure of knowing an amazing mother, Robyn Matthews who has 3 little boys. There journey has inspired me, changed me, humbled me, and broken me. Let me explain in my own words a tiny bit. To fully understand the journey Robyn and her family have had you can read the brief version written by Kyle Matthews below or visit thematthewsstory.com.
At our September 2010 meeting Robyn shared a prayer request for her 2 year old son, Ezra. Ezra had been diagnosed with stage 4 *Neuroblastoma in October 2009 at just 13 months old. Robyn, her husband Kyle and their son Ezra had been through several months of treatments, chemo, radiation, tumor removal, stem cell transplants and then just 1 day before Ezra’s 2nd Birthday they found out that Ezra’s cancer was back. They needed a miracle. They went to Orlando, FL for a drug trial but were pulled from the trial just an hour before the first dose because Little Ezra was deteriorating too fast. There have been a lot of ups and downs with Ezra’s condition and the past 8 weeks have been a test, a trial of my own life and heart. I fasted for the first time ever. I have prayed for Ezra to be healed on this earth like he is my own son. I have begged, cried, prayed, and hoped to God for a miracle. I have seen myself, my life, my children, my soul, through new eyes (and I did not like everything I saw). My heart has grown because of the love of a child not my own. I know that I am forever changed. I am a better daughter of Christ, a better wife, mother, friend, and person because of Ezra. Time matters, it is something so many people including myself take for granted. It should not be. I hug my little ones longer, tighter and so much more often (which we have never been short on doing My husband and I have slowed down the pace of our everyday lives so much. Our perspectives have been altered, piorities changed. Life is just so precious and we want to capture every second we can. I want to thank Ezra for changing me. Ezra went to be with Jesus on Nov 8th, 2010.
The Full Story:
“Ezra was diagnosed with stage 4 neuroblastoma on October 4th, 2009 at the age of 13 months. On October 6th we found out we were pregnant again. After weeks in the hospital and an initial round of chemo, in early November we were able to do our first ultrasound and already see Robyn was pregnant with twins. As the months progressed, Ezra went through 6 rounds of chemo, various treatments, and moving towards having the main tumor (above his left kidney) removed.
On March 1st, Robyn and I went to her dr for her scheduled pregnancy checkup, and the dr told us she was 1-2 cm dilated. Her due date was July 21st – this was nearly 4 months early. We took Robyn straight to the hospital where she was on bed rest for 2 weeks, but those babies weren’t waiting in there, and on March 15th, at 26 weeks (3 1/2 months early) our twins Price and Charley were born. Price was 1lb 13oz, and Charley was 1lb 15oz. They both had multiple heavy complications, including level 4 bleeds in the brain, and on March 22nd, the twins’ 1 week birthday, God took Price back from us.
Charley was still critical, and had many of the same issues as Price. He was rushed to All Children’s hospital in St Pete, who had better drs to handle the brain trauma. He received multiple surgeries, including having a shunt put in his brain, then removed as it wasn’t working correct, a new shunt put in, then another surgery to move that shunt. It’s now working great and will remain with him for life. He also had heart surgery to fix a murmur, which went well. Charley is now home! He is on a very low flow of oxygen (he should be off in a couple months) and has a G tube in as he can’t yet take a bottle. These are temporary issues which will fade with time, and before long he should be just like any other kid.
Talk about a whirlwind of emotions. 2 weeks after Price died, on April Fools Day, 2010, Ezra had his neuroblastoma tumor successfully removed. His left kidney was fully involved with the tumor, and was also removed. He recovered well, and we spent the entire month of June living in a hospital for stem cell transplant for Ezra – in an isolated, HEPA filtered room. Charley was in the same hospital (and still is), only 1 floor away, so we were able to visit him often, although Ezra wasn’t allowed to leave the room the entire 30 days.
The day before Ezra’s 2nd birthday we discovered he’d relapsed already, less than 4 months out of stem cell transplant. This means his neuroblastoma is very aggressive, and at the moment there is no cure. We’ve been through a couple options since then, but his cancer is still showing no response. We were slated to start a trial using a drug called Nifurtimox, but Ezra’s condition began deteriorating rapidly, and he was unable to qualify for the trial – literally less than an hour before he was about to get the first pill.
On November 8th, at 2:50am, Ezra passed on. The Neuroblastoma had kept growing, and although we did one last round of chemo in Orlando, it didn’t stop, and early early on a Monday morning we lay in his bed with him and held him as he died. We miss him”.
*Neuroblastoma is a rare cancer of the sympathetic nervous system — a nerve network that carries messages from the brain throughout the body. Each year there are about 700 new cases in the United States. It is usually found in young children, and is the most common cancer among infants specifically. These solid tumors — which take the form of a lump or mass — may begin in nerve tissues in the neck, chest, abdomen, pelvis, or, most commonly, in the adrenal gland. They may also spread to other areas of the body, including bone and bone marrow.
The cause of neuroblastoma is unknown, but most physicians believe that it is an accidental growth that occurs during normal development of the sympathetic nervous system.
Treatment for neuroblastoma differs depending on many factors, particularly the stage of the disease and the age of the patient. Neuroblastomas that have recurred, or come back, may require different types of medicine.
Source: Memorial Sloan-Kettering