March 15, 2014: We're home!
As a wonderful Sabbath gift, Edward and Emilie are home! This will probably be our last post for a little while, as we settle back into normal life. Of course, there will be follow-up visits with the surgeon, neurologist, and hematology/oncology team, and we'll let you know about any new developments, especially as Edward shows improvement with various treatments. Also, we have many, many pictures to share, and as soon as we have time to share them, we'll let you know!
As of today, Edward has bandages over his two chest tube sites and there are still steri-strips hanging onto a few incisions from his two surgeries. He has tiny bruises where he has had various IVs over the last three weeks, as well as on his epidural site and central line access point. Most obvious and sad-looking of all are all his tape injuries. Apparently, Edward has very sensitive skin, because he still has scabs from where the tape pulled skin off his face after the first surgery, and there are tape burns and irritations nearly everywhere on his little torso. But... he's home, and the only tape left on him will come off on Tuesday when we can remove his chest tube bandages!
Cancer-wise, he is looking good, with most of his neuroblastoma having been removed from his brachial plexus, and the tests showing that his cancer was not n-myc amplified, and will therefore most likely not need chemo.
The major thing we are left with is the opsoclonus myoclonus syndrome (OMS), which we will hopefully see diminishing with the IVIg treatment he just received. At present, Edward is not able to sit up on his own, let alone crawl or walk--things that he used to be able to do. However, we are very glad to report that the chaotic eye movements (opsoclonus) are now nearly non-existant!
We hesitate to mention everyone who has helped us survive this ordeal because there are simply too many to name, but please know we are eternally grateful for the tremendous love, support, and especially prayer that has been offered on our behalf. We are humbled and thank the Lord for your friendship and care.
Happy Sabbath!
Comments (34)
So wonderful to hear you both are home!! We will continue to pray for Edward's full restoration. He is such a precious Little Bud!!! God must have a great work for him to do some day!!
Wonderful!!!! PTL. Prayers continue... Rest and heal! Blessings!
Yay!! So glad you are home again. What a special Sabbath blessing.
Congrats and welcome home! Will continue praying for healing, rest, and normal life to return for all.
Praise the Lord, home at last, home at last! This is great news! I am sure little Edward is thrilled, but i'd love to be a mouse in the corner and see big brother Henry's expressions knowing all are home for some normalcy! We're so happy for you all! Prayers never ceasing for little Edwards healing! Zooming out, I am looking forward to the day we get to see the whole family in Church! Love you guys, Jer & Deb
What a road you have travelled, and now to be at home once again together! How mighty is our Lord! Thank you for all the updates over these past few weeks. We keep you all in our prayers and thoughts. If there was a prayer for every visit to this site (and there must be more), how awesome knowing Jesus is listening and answering all these prayers! Blessings, Peter & Nerida
You're in our prayers and we praise the Lord for every positive development you've seen.
So happy for all of you and very grateful to our Lord and Savior for His loving watch care over you all during this trying time. The scars that Edward carries on his little body will fade away with time as I hope will any remembering of this time he might have. But never as long as time last will we or you ever forget Gods answers to the prayers offered on Edward's and his families behalf. And as you remember may it increase your faith and trust in His love for you all.
God is good! And we thank Him for answering prayer and also forgiving Edward parents who love and trust The Lord! Continuing to keep you in our thoughts and prayers!
Wonderful news. So happy for you, that you could be home today. Edward is such a 'fighter' and God is blessing him. We continue to pray for you, Geri and Ekkehardt
PTL! I like Jerry Townsned's comment "zooming out"! We're going to have to 'wean ourselves' from checking several times a day for updates, ;0), while still remembering to pray! Take care Little Mama! And thanks again, for keeping us all posted, but remember, your health and sanity come first!
Kameron and Emily, praise God, praise God, praise God!!!!! I am so happy your family is under your own roof and you are all together and I am even happier that little Edward appears to be doing so well and responding to treatment. Prayer vigil will still continue until this neuroblastoma and the OMS are both gone completely from his little body. I am sure God has great plans for Edward as well as Henry. Love you both. Auntie Penny
Amen! So happy for all of you. You will be covered by prayer for th dats ahead. Rest. Relax. Enjoy.
So happy that you are home! Praise God for answered prayers! We pray that all of you can recover from this ordeal and soon enjoy the blessing of a happy, healthy family again. Thank you for all of your updates. God has a special plan for Edward's life.
Praise The Lord! May He continue to help you day-by-day...
So thankful to know you are all home! Thank you for taking the time to keep us updated so we could pray intelligently - even our 10 year old has been happy to hear the daily developments and join in praying for Edward.
So glad he is home! Praying all goes smoothly.
So happy for you!! Enjoy your night's sleep without hourly rounding!
Blessings have been silently. wonderfully and fully come in the way of God hearing and answering our prayers for Edward. Jesus loves the little Children... He has a plan for "our" Edward. Pastor, thank you for your message today, God has brought you to our church family and to my family. Love to all of you. M
Yes... Praise The Lord! I'm claiming the promise of Phil. 1:6, that HE that started the work in little Edward will be faithful to complete it!! Will continue to pray. Rest sweetly in your own beds now, and God's healing blessing continue to overshadow your home. He is faithful!
Thank you for sending the good news! Enjoy being at home. We will continue praying for your family. Lynne and Mickey.
We are so happy for you. PTL
Congratulations on being home! So thankful for all of the good so far and praying for continued healing! Love from us!
Glad you are home. Thank you for sharing the good news with us. Maybe Ikey can cook some soup beans and hoecakes.
Welcome home Emilie and Baby Edward. This gospel song keeps coming to my mind and I will share the refrain. "Praise Him, praise Him, praise Him, praise Him Jesus blessed Savior He's worthy to be praise. Indeed He is worthy! May God bless and keep you; we will keep you in our prayers. J Arthur and Velma
SPENCERVILLE Adventist Academy have prayed for Edward, the doctors, and your family! What a wonderful Sabbath Blessing you received! Continued prayers for ALL!
We are so happy for you and will continue to pray for him to improve and return to a happy healthy little boy.
Praise God for listening to our prayers!! Glad you are back home!' Will continue to pray!! 🙏🙏
So thankful for Gods gracious mercy! Praising The Lord you are home, what a wonderful sabbath blessing!
I know you are so happy to be all together at home as a family again. Thank you for sharing Edward's story with us - he has had to endure a lot over these past few weeks with all the treatments and procedures. My heart goes out to you all. God has a plan for little Edward. I will pray for his continued healing. Linda McEowen
Praise the Lord for answered prayers. We will continue to pray for Edward and his family. Thank you for the opportunity of being a part of your spiritual journey.
Feels good to read your blog! All the bruises and tape irritations will soon disappear. So glad to know that Little Edward and mommy are back home. We continue to pray for Edward and your family. He whose heart is kind beyond all measure, gives unto each day what He seems best! God bless you !
Praising God for good news and continuing to pray for you through the healing process. Mark and Audrey Walker
Looking forward to seeing the bright smile again on this little boy! this prayed for boy! continue to catch up on life and rest. The healing will come, and scars will deminish, but the want to shield Edward from all this is like our Heavenly Father, and how He so longs for each of us to cling to Him so one day we will not have to suffer anymore.