March 5, 2014: Very good news and a frustrating new wrinkle
About an hour ago, an oncology resident stopped by Edward's room to let us know that his bone marrow is completely free of cancer. Praise the Lord! We still haven't talked with his oncologists directly, but obviously this is very good news. =) However, another wrinkle in Edward's progress has developed. During his morning visit, the surgeon, Dr. Robertson, noticed a milky fluid in Edward's chest tube. Apparently during the surgery, the thoracic duct was damaged somehow which has resulted in a chyle leak.
From what we understand, the thoracic duct transports lymphatic fluid (chyle) to the upper left chest where it enters the blood stream near the heart. Now, instead of doing that it is leaking chyle into Edward's chest cavity, a condition known as chylothorax. It seems there are two ways to address this problem: 1) stop his ingestion of food to halt the use of the thoracic duct and thus allow it to heal on its own or 2) perform a thoracotomy to stop the flow of chyle through the thoracic duct permanently. While there are pros and cons to both approaches, Dr. Robertson has decided the best option for Edward is to fix the problem surgically sooner rather than later.
So, Edward will most likely be having another operation this Friday, although no details are set yet. Further treatments for Edward's opsoclonus-myoclonus are being postponed until this issue is resolved. This development means that Edward must be given nutrition intravenously and may not breastfeed or eat anything else until further notice. This is understandably hard on both Emilie and Edward, so please continue to keep them in your prayers. On a related note, the most immediate need for both of them is sleep. The combination of post-op pain (which hasn't been under control since about midnight--we're working on that), no food (even IV, for some 10 hours now), and pre-existing ataxia makes for a very restless, unhappy baby... and mommy.
Thank you for your continued prayers. We are buoyed up by your messages of encouragement, even though we do not have time to answer or tell you individually how much we appreciate you. -Kameron
Comments (41)
That's great news about the bone marrow! We will continue to pray for the upcoming surgery.
"Cast your burdens on the Lord and He will sustain you". I am praying and shall continue. May The Lord who loves you grant you rest and sleep.
My heart aches for Emilie...I can understand her "mother's heart" wanting to comfort her sweet baby. Our family, our school and our church are keeping you all in our prayers. The Lord is with you every minute of every day.
Thank you so much for the update. It is greatly appreciated! I am so sorry to hear about the frustrating "wrinkle". I will continue to pray for healing and strength and guidance. If there is anything I can do for you all or get for you just let me know.
Although, it is a problem, hopefully it is a problem that can be solved in 2 days, not a long term problem. Also, Praise the Lord, no cancer in his bone marrow. What a blessing is that? The Lord continues to provide good news. Hoping he is able to use his arm and hand again.
Thank you so much for taking the time to keep us updated. So very glad to hear the good news of cancer free bones and praying this latest "wrinkle" will soon be ironed out. Psalms 63:7 "Because thou hast been my help, therefore in the shadow of thy wings will I rejoice." May you all find rest and peace in the shadow of His wings.
Our hearts go out to you all, especially Edward and Emilie. All we can do is pray. But nothing is more powerful than that.........
Praise God for the Bone marrow report!!! That is terrific news!! I know you guys are not out of the water yet and especially frustrating with this new wrinkle. Here's a promise for Edward right now: "But now, thus says the Lord, who created you, [Edward], And He who formed you, [Edward]. "Fear not, for I have redeemed you; I have called you [Edward] by your name; You are Mine. When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, Nor shall the flame scorch you. For I am the Lord your God, The Holy One of Israel, your Savior…" Isa. 43: 1-3. You all are walking through the fire right now, but even in the fire, He will continue to walk with you! Prayers continuing. Love, Mel
Being an optimist, I hang onto the blessing of no cancer in the bone marrow! I'm so sorry for the stress to Edward and Emilie of no oral feedings and will continue to pray for this precious child as you move forward in his care. Hugs to all,of you:)
Praying! So thankful for no cancer but so sad about another surgery. Wow. Praying for courage through this experience. Hang on to Him! We wish Jesus to give you some peace as you are sleep-deprived, hungry, and in need of comfort. Hugs.
What heart wrenching news and yet good news about the bone marrow. Joining everyone in much prayers for Edward and Emilie!
Thanks for all the updates. I can only imagine what you all are going through, but your strong faith is shining through! You are in our daily prayers (from your friends in the Philippines :)
This made me want to cry. I am praying so hard for everyone but especially for Edward and Emilie tonight. I know Emilie wants to continue nursing so I am feeling her pain. Prayers, Prayers, prayers. I wish more than anything right now I could give Em a big big big hug!!! Prayers for you too to be a strong Papa!!! Hugs!!!
Thankful for the good news and praying for you on the wrinkle. My heart aches for Edward and Emilie. It is so hard for a mother to watch her child in distress and not be able to suckle him. Praying for the Great Physician to be especially near you all and lay His hand on Edward and Emilie to get some much needed sleep. This is hard on Daddy too, so you are lifted in prayer as well.
Praying! So glad to hear of the good news. :)
Thankful for the good news of no cancer in Edward's bone marrow! So sorry about sweet Edward having to go through another surgery. I am praying for good sleep for Edward, Emilie and entire family. Praying for wisdom for the doctors and for strength and peace for the whole DeVasher family.May our loving Heavenly Father be very near to Edward and all the family!
I am so thankful that the bone marrow contained no cancer! What a blessing! However, I really hate to hear that this other complication occurred. I'm SO sorry that precious little Edward will have to go back to surgery again, and so sorry for what Mommy and Daddy are going through in this additional process, too. I'll pray for rest for tonight's most immediate need, and for continued strength, comfort, and wisdom in the coming days. I love you all SO much!!!
We are praying for Edward.
Praying for peace and rest tonight.
Heavenly Father, we hold Edward Devasher up in prayer. Little do we conceive of the pain his little body is going through, or that his Mother must reject him her life giving nourishment. But you Lord know pain, suffering and rejection and we must put our trust in you for Edwards recovery. Lord give your servants Emilie and Kamron peace, rest and strength to endure the waiting for the upcoming surgery. I pray this in the true name of Jesus YESHUA HaMashiach
So thankful there is no cancer in the bone marrow, but SO sorry about the complications. May the Lord grant you all His peace and a good night's rest. We continue to pray for you and especially for Edward. Bon courage!
My heart also aches for Emilie with not being able to nurse and comfort Edward. We are so happy for the cancer free news! We are praying for all of you, especially Edward, during this time and for the upcoming surgery. God answers prayers!
Sending much love and holding all of you up in prayer.
De
With love and prayers. Auntie Terry
Praise the Lord for the good news of cancer-free marrow!! Sending all of you prayers for strength, calmness inside this storm, and for heavenly wisdom for the medical team that is doing the best they can to remediate this difficult situation!!
Kameron, you are a tower of strength for your family! We uphold you all in our prayers.
Joan and Bill Bromme What a wonderful witness of trust and strength your family is to all of us who see your family going through this awful,trying time. God is using even the pain and suffering of your little innocent boy to bring Him glory because of your faithfulness of trusting in Him. Our prayers continue to be with your little one and all of you. It's hard to understand but we must trust that God's loving heart aches even more than yours.
Janie and I continue to pray for you all! Praying for peace and rest...
Continuing to pray for you all.
Kameron & Emilie, Thank you for keeping us posted so we can better focus our prayers for you and little Edward. It's great news that there's no cancer in his bone marrow. We pray for you all often as you go through this dark tunnel experience. Jesus will be with you in the tunnel and will bring you safely out the other side. He is faithful! (Lam. 3:23). With much love and prayer for you, May-Ellen & Gaspar
Emilie and Kameron, Our hearts and prayers are with you and Edward. We prayed for you all at prayer meeting last night and will continue to be praying. May you be strengthened, guided, encouraged and blessed. Our love to you. Dan and JoAnn
You are in our thoughts and prayers. We will continue to pray for The Lord to give little Edward more strength as as goes through more procedures and treatments. Take care.
We are all praying for your little one and for you. May God's love, comfort and healing surround you. Mark and Audrey
I am praying that the chest tube drainage stops before tomorrow's surgery and the Octreotide drip works. May God's healing hand touch little Edward. Blessings on your family. Amy Benedict
We continue to pray for all of you. I am SOOOO excited to hear the bone marrow looks good! At the same time I know how miserable it felt to have Anja NPO during her hospitalizations and I am keeping you both in my prayers. Lots of love from the Sandholms.
We have prayed, and will continue to pray. May GOD HEAL your precious son by His grace. God CAN do all things! In JESUS' NAME we commit Edward to you for healing, and health, and joy. Oh God we trust in You.
We are continuing to pray for Edward and your family. We are grateful that we have a God who will see you thru this very trying time.
Praying for comfort and rest for Edward, Emilie, Kameron, Henry and those holding onto them through this time. Debbie Wood
continuing to join everyone in praying for your family and especially little Edward and Emilie.
We are praying for your whole family during this stressful time. Thank you for sharing the progress as it happens. God will give you strength and healing.