April 10, 2014: Changing plans
We called the clinic yesterday and described Edward's worsening symptoms--increased opsoclonus and myoclonus, increased fussiness, sleeping less, and not wanting to be put down. They squeezed us in this afternoon at 1:00, and we had a long discussion with Dr. Mitchell. We love her! She had talked with her colleagues, and they had agreed it would be best for us to start rituximab. It's a monoclonal antibody with a complicated mechanism of action that I don't fully understand, but I gather that it wipes out B cells, which is where the antibodies that are attacking Edward's brain are being made. Wipe out the B cells, wipe out the attack.
We waited for a long time while the clinic got permission from our insurance company to give this treatment. We worried that they wouldn't allow for outpatient infusion and Edward would have to be admitted. Finally, we got word that Edward could have the infusion as an outpatient! Praise the Lord!
Ironically, by then it was too close to closing time at the clinic for him to start and finish the 5-to-6-hour infusion, so we actually had to go down to the HemOnc unit (just one floor down) to be admitted, so that the night nurses could give Edward his first dose. We are here, now. Edward is sleeping (yet another praise!). The rituximab has been infusing for just over three hours, and there have been no adverse reactions, so far. God is good!
We had the option of staying all night or leaving as soon as his infusion is done, which will be around 12:30am. As wonderful as the staff is, we've spent too much time in these hospital rooms to want to stay five minutes longer than we have to! As we get closer to being done I'll call Kameron, and he'll bundle Henry into the car and come get us. We'll get several hours in our own beds, and wake up to have a normal day tomorrow. Yay!
Edward's IVIg schedule will continue unchanged, as he now needs the IVIg to provide him with immunity, since the rituximab will be wiping out his B cells. IVIg wears many hats, it seems.
I write this post with a much lighter heart. Thank you for the outpouring of love in the form of messages, emails, and OMS-related journal articles and websites (keep sending them as you find them, please)! You are wonderful! We so appreciate you scouring the internet and sending requests to your friends in medical and academic fields. Thank you!
Comments (23)
Prayers tonight... Thanks for the continued updates. Jesus is the gentle shepherd and I believe His strong arms are wrapped around you and cradling little Edward. Courage!!!
Just wanted to come out of post-reading silence to let you know what a blessing all your updates have been for me - I've been praying for you and the family, so hearing how God is working is a real encouragement. It's especially crazy for me since everything you're talking about is right in line with what I've been learning this semester in med school (just finished our immunology course a couple weeks ago, so B cells and IVIg are all too familiar!). Anyway, there's a prayer line going up to God from Nashville on your family's behalf - may God continue to bless you with strength and ever-strengthened faith! Love, Melinda
Praying for you & precious Edward right now my friend. May Jesus be so very close to you both.
Oh, so happy for you! What a stress, but praise God for the refreshing blessings upon the way! Hugs! Kamil & Annette
It's wonderful to hear a tone of relief in your post. Know you are prayed for! Jesus' arms are around Edward, and around all of you.
I know what you mean about to much time in hospitals, they get old real quick. So thankful you get to go home tonight even if it is late. It is these little blessings from God that help get through the tough times. Sandy and I thank of you and little Edward everyday in our prayers. thankful you are getting some helpful info, praying God will send you what you need, and give you peace and hope. God bless
Ditto to what Nicole wrote. God is on the throne still… Praying, and hope you get a little sleep tonight! Love Mel
Many people continue to lift you and your family up to God and especially little Edward! We serve a miracle working God and we will continue to join in prayers! Let us all know when you have Edward anointed, so we can join you in fasting and prayers.
Happy for you regarding the good in the latest developments. Praying for all of you. With Love.
We continue to pray for your son and to all of his family. Praise God for we all know that He loves us all.
Emily, praising God for His wonderful love and care of Edward!!! Emily, I have posted on Revived by His Word asking all my family and friends on that website to pray for Edward and the responses have been incredible!! You need to know that people around the world are praying not only for Edward, but the whole DeVasher family. I just praise God for all He is doing. He is indeed our Savior and He will not let Satan win this battle!!!!!
So glad the doctors have found something to try! Love you Emilie!
Initially when I got the news that Edward is not walking again and that he is not doing good, my heart sank but I kept pleading with our Heavenly Father. Thank God that you were able to get the necessary treatment for him and that he is sleeping better. Thank you so much Emilie for the updates. You are a very good writer. May be you should write a book on Edward as he grows up. Love and hugs to all four of you.
We will all keep praying for that precious little Bud!! I know the Lord must have a great purpose for him. All of us will lift him up before the Lord, without ceasing!
Praying...thankful for the answered prayers. Thank you for keeping us updated so we know how to pray for Edward and your family. The Great Physician hears your prayers and the desires of your hearts.
Just got home from second eye surgery so have been catching up on all the postings and comments ; what a great outpouring of love and devotion from all your friends and family as you go through these trying times. God has indeed listened and I know has given the doctors the knowledge to carry out this next phase of Edward's treatment. I continue to pray for everyone involved and especially for your family. Much love to all!!
Praise God for His Divine leading in Edward's health! Praying and asking for healing, strength, and courage for all of you. Hugs to all especially to little Edward.
Praise the Lord for a lighter heart. For His guiding hands. It is such a priviledge to take part in prayer for everyone of you. "Rejoice in the Lord always; again I say, rejoice!.... the Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your request be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus!" ... "For God is love"
Emilie, The Lord is good all the time. "Beware in your prayers, above everything else, of limiting God, not only by unbelief, but by fancying, that you know what He can do. Expect unexpected things, 'above all that we ask or think'. Each time, before you intercede, be quiet first, and worship God in His glory. Think of what He can do, and how He delights to hear the prayers of His redeemed people. Think of your place and privilege in Christ, and expect great things." Andrew Murray We are staying in tune with our powerful God on behalf of Baby Edward and family. Expect great things; He is able.
So happy to hear this good news and will continue to pray that all goes well.
We are praying for all of you. The prayer chain was started as well. We have such an Abba Father, and His love and care is unlimited. Trust Him. Sending hugs.
We are still praying for your precious Edward and the whole family.
are there any new updates?