April 25, 2014: Two weeks later...
[Thursday, April 24 - Eating breakfast while waiting to start his third rituximab infusion]
We haven't updated the site in two weeks, because we've been maddeningly busy trying to understand and function within our new normal. Also, there's really nothing new to report. Edward had his third rituximab infusion on Thursday, and his third IVIg infusion today (Friday). Each infusion has been without incident, unless you count the fact that Edward has had to be woken up both mornings to get to the appointments on time, and has not napped for more than 40 minutes in the past two days. He's used to having two naps a day, and sleeping until 7 or 8 in the morning. In fact, last week he slept in even later than that a few times. At this point he's VERY cranky--crying inconsolably at the slightest provocation. Today Dr. Mitchell, who Edward normally likes very much, walked in the room and Edward started crying and wouldn't stop no matter what I did. It is so frustrating. Is it just fatigue? Is it the disease progressing? Is he just frustrated? Is he uncomfortable? Is it lax parenting? What's wrong with our sweet little boy? Today began another five-day pulse of decadron (dexamethasone), so that will likely compound the behavior issues.
Fortunately, he's not like that all the time. He had two meltdowns yesterday and three today, but in between there were smiles and and happy play time.
Having two full days in the clinic in one week is a little hard on all of us. Henry has been sad not to go with me the last two mornings, but he has had adventures with Kameron, and is handling it all fairly well. Today was especially exciting, because they got to go to the airport and pick up Kameron's sister! Henry has been excited for many days about Aunt Alescia coming.
Edward's symptoms haven't changed much. Kameron and I do think Edward's eyes are a little less darting and restless. Also, he's now able to move from lying down to sitting. It would be generous to call it sitting up--he sits on his bottom and the top half of his body flops down over his legs and he sort of pushes on the floor with his hands to hold himself a few inches off the floor. His head is down most of the time, so we don't see his eyes unless we're trying to. Sometimes we prop him up in the corner of an armchair, and he seems to enjoy leaning back and looking out at the world. We'll try to post some videos soon.
Other symptoms... He's drooling more than he was a few weeks ago. He's not saying words, anymore, although he will still sign "please" on command and he will usually fold his hands when we say we're going to pray. He does not say "yes" or "no" or even nod anymore, but he shows approval by grinning and humming and kicking. He shows disapproval by doing nothing, or, of course, by screaming horribly.
We have contacted Early On, which is a free early intervention program within Michigan for infants and toddlers with developmental delays or disabilities. They'll most likely be calling us sometime next week to set a time for them to come to our home to evaluate Edward and see which of their services he might need. We'll know more after we meet with them, but we're hoping they'll be able to help with physical therapy and speech therapy, including helping us teach Edward more signs. Even if spoken language may be moving further into the future, perhaps he will be able to learn signs that could decrease his frustration and help us care for him better.
Next Thursday, Edward will have a fourth infusion of rituximab and then we will give it some more time before we evaluate whether this course of treatment is working. I don't know what Dr. Mitchell's next move will be if the rituximab doesn't work, but I do know that she consults with a lot of other doctors, including writing to doctors in other states to help figure out these tough decisions.
Oh, and Edward will have another fused MIBG/CT scan to check on the cancer next month. With his OMS symptoms and treatments, cancer honestly seems (and likely is) the least of his problems. We are, of course, hoping the scan is clear and while we have no reason to believe it wouldn't be, this will be a matter of prayer nonetheless.
For now, we feel like we are just in a holding pattern, waiting to see if rituximab works on the OMS. The Lord has been good to us during all this. Many of you have reached out to us with cards, messages, gifts, food, and offers of help in various areas. We are so grateful for you! Thank you for continuing to pray for us all and for encouraging us as time goes by.
Happy Sabbath!
Comments (32)
Thank you for keeping us posted. We keep him and you in our prayers. God knows that cute little guy, and loves him with all His heart. He is in Gods hands. Love Fred & April Hardinge
Dear Emily, I am soooo sorry to hear about the slow progress of Edward. But what I see in him, he is a fighter. I have never heard about OMS before. I thought maybe I can go to the German Internet if there is more information. I found the information below. Some of it is translated. But maybe the content is no additional news to what you already know. Enno had several ear surgeries when he was a little child. I remember that when he had to go in for surgery and saw the anasthesist, he asked a lot of questions. With he questions he would delay the surgery. After every surgery and going to the next surgery the questions became more and more. I am telling you this in order to let you know that children know what is coming up and are fearful and afraid. Just hold Edward, love him, bring a surprise toy and show it to him shortly before he starts crying when he is seeing the doctor. I did that to Enno (but of course he was a little older) I showed him the toy and said "no more questions and you can have the toy". It helped in his case :). God's blessings for everyone and we continue to pray. Geri http://www.anna-merkel.de/html/oms-forschung2.html
Dear Emilie and family: My heart aches for you all, especially for Edward. Many prayers are being offered for Edward's situation and for strength and courage for you as you face each day. Hold on, God is still there! As C.S. Lewis so aptly understood: “God whispers to us in our pleasures, speaks to us in our conscience, but shouts in our pains: It is His megaphone to rouse a deaf world.”
Cherish those smiles and laughs. The bright spots help to make it through the rough times. God will give you what you need for this journey. We love you and are praying for you.
Precious Emily, you folks are constantly in our prayers. We hold little Edward up each morning and night to the Lord. It is my prayer that God's will be done. However, since I am human and am not able to see the end from the beginning, I too become anxious and frustrated that such a young innocent child must suffer so. Yet I know that God is in control and He can take any situation that Satan throws at us and turn it around to the Glory of His Name. I am waiting to see how God turns this incident around. I know that He is standing right by your sides, especially little Edwards and I know that He has a plan. I just don't know what that plan is but I pray for patience, faith and trust in God for both you and Kameron as well as both sets of grand parents. He tells us, "Be still and know that I am God!" He will not let little Edward, you, Kameron or little Henry down. Love and hugs to you all. Aunt Penny
Happy Sabbath to all of you. We will continue to lift all of you up in prayer. We have tears in our eyes and hearts for you during this time of challenge. However take courage and know that our Lord is with you in all of these struggles. May you find the strength in knowing that many are lifting you up in prayer across this earth. Jim and Janene Ayer
Praying for you all!
Precious and dear little family, dear not only to your earthly family and friends, but most of all to your Heavenly Father! Our thoughts and prayers continue for all of you! We do not know the whys of this challenge to you, but we do know who continues to hold your hands! Please know we think of you daily and people ask very often about Edward. Thank you for taking time to share with us, your Avon Park family. Our love and many,many prayers!
Edward looks so sweet in that chair! Nice smiles! Sweet spirit! He's just so small to be annoyed by the devil's "gifts" to earth. I ache for him and cry when I think of what he's doing to you, but "...I saw a new heavens and a new earth...". Courage. Love and prayers, The Metz Family
Dear Emilie, thanks for the update. Your description of Edward bursting into tears reminds me of when Heather, who was six at the time and had to have many immunizations before we moved to the Philippines would also burst into tears and say "No, no!" when we were got close to the vaccination clinic and she realized more shots were coming. I suppose the injections are not very pleasant. On the other hand it may be just that Edward senses your anxiety and it comes out when the doctor arrives. I'm sure it's not for lack of love! Your whole family remain in my prayers.
Thank you so much for your updates. Our prayers and thoughts are with Edward and your family always. Please tell Alescia hello.
Emilie, you don't know me, but I want you to know that I am adding my prayers to those of many others for your little Sweetheart. We know that God will make your baby well again--we just don't know His timetable. I think you are wonderful parents and I pray that God will give you continued strength and insight. Don't feel bad if you have to let some things go as you focus on the more important things. Hugs over the miles from California.
Emilie and Kameron, I'm fairly certain you can rule out "lax parenting"! Just keep trusting God to continue leading you~ and remember rhat one way He does that is through your instincts! And of course, so many people are lifting your family up in prayer. You are never alone!
Emilie, just as spring finally sprung suddenly, I believe God will move in Edward's life, and work His miracle in your precious son. You are being held by a God who's love is so bg, we can't truly grasp it. Know that many are keeping your family covered in prayer. May God bathe you in His peace.
Dear Emilie, our thoughts and prayers are with you through out the week. And even though we are in expectation and awaiting updates, we totally understand how hard finding time for this can be. We are so thankful that you both allow us into this struggle of life that you are in. I am not the greatest at quoting scripture but I do know that it is an honor to pray for others, and a blessing to be able to pray for Gods will in this situation. What ever that will may be. For the Lord answers prayers in ways we as mere humans do not understand. What I can say is that your witness for the Lord has uplifted me. To see someone go through terrible life threatening situations such as this, and hold so tight to Jesus is uplifting and strengthening for my own walk with Jesus! So keep holding on to Jesus with everything you have, as God is faithful to such... God bless you all four! Jerry & Deb
Thank you for telling us of your past two weeks. Our God is able to deliver and He is showing you so much grace. I shall continue to pray for all of you. Take courage and never give up With liove.
Dear Emilie and Kameron, Our hearts ache with you during this enormous challenge in your lives. Just know that Jesus sees and feels it all, and His love for Edward and you never fails and He is very near. We keep you in our prayers - for strength, for patience, and for love in your family. And may the peace that passes all understanding guard your hearts and your minds in Christ Jesus. With love Peter and Nerida
Dear Emilie, Kameron, and Henry, My heart aches for Edward and your little family. I know that God's heart aches more than mine. A song comes to mind, "His eye is on the sparrow, and I know He watches me." God sees everything and will continue to supply your needs as you trust in Him. Thank you for keeping us informed so we know what your needs when we pray. Will continue to lift you all up in prayer.
We prayed for Edward and your family in our Sabbath School class in Charlotte yesterday. We continue to pray for healing and strength for your family. Jesus loves you so much. Thank you for sending the continuing story of your journey.
A JEWEL OR A PEBBLE? Christians are Christ's jewels. They are to shine brightly for Him shedding forth the light of His loveliness. Their luster depends on the polishing they receive. They may choose to be polished or to remain unpolished. But, everyone who is pronounced worthy of a place in the Lord's temple must submit to the polishing process. Without the polishing that the Lord gives they can reflect no more light than a common pebble. Christ says to man, "You are mine. I have bought you. You are now only a rough stone, but if you will place yourself in my hands, I will polish you, and the luster with which you shall shine will bring honor to My name. No man shall pluck you out of My hand. I will make you My particular treasure. On My coronation day, you will be a jewel in MY crown of rejoicing." The divine Worker spends little time on worthless material. Only the precious jewels does He polish after the similitude of a palace,, cutting away all the rough edges. This process is severe and trying, it hurts human pride. Christ cuts deep into the experience that man in his self-sufficiency has regarded as complete and takes away self-uplifting from the character. He cuts away the surplus surface and putting the stone to the polishing wheel, presses it close that all roughness may be worn away. Then, holding the jewel up to the light, the Master sees in it a reflection of Himself and He pronounces it worthy of a place in His casket. " In that day, saith the Lord of hosts, will I take thee.........and make thee as a signet: for I have chosen thee, saith the Lord of hosts. " Blessed be the experience, however severe,, that gives new value to the stone, and causes it to shine with living brightness. And Emilie, here is where I thought especially of you and your family. God will not suffer one of His truehearted workers to be left alone to struggle against great odds and be overcome. He preserves as a precious jewel everyone whose life is hid with Christ in God. You and your precious family are daily in our prayers. May the luster with which you shine continue to bring honor to the name our our Lord and Savior as He leads you and strengthens you daily.
Praying for you!!
It is not lax parenting...what Edward has gone through to help restore his health would make an adult cry...having through some extensive treatments (including an autologous bone marrow transplant) myself for breast cancer 25 years ago, I understand. I have been completely healthy since that time, thank The Lord. Sometimes the cure is as hard as the disease-it can be as hard emotionally as physically. You hang in there, you are good parents. Prayers. Becky Koeppen
Lots of love and prayers to you all. Uncle Don, Auntie Melinda XOXOXO
Dear Emilie and Kameron, Thank you for taking time to share with us about Edward’s conition. We are thankful that you both allow us into this struggle of life that you are going through day by day. As I read your description of Edward’s situation, my heart ached for you. Whenever Edward sees doctors, he cries because he knows that their presence means more tests and more painful infusions. Many prayers are being offered for little Edward (even in India) and for strength and courage for you both as you face challenges each day. Will continue to lift you all up, in our prayers. Jaya
Emily and Kameron, Pastor Mike and I have continually lifted Edward and you in our prayers. Having just finished the course of treatment for breast cancer I am very aware of some of what little Edward is facing. There are no human devices that can take you through this but Praise Heaven and earth the presence of Jesus and the hope He gives will sustain you! May the Lamb weep with you when there are tears and may the Lion from the tribe of Judah be your strength and stand for you when you don't think you can! Praying always...
I am keeping your family in my prayers, May God do what is best and comfort you in this journey.
Praying for you all daily!!
Karen E. Schneider I am a nurse friend of Joann Bromme. I understand your grief and fear and pain. I pray for you and Edward regularly! He is a precious and beautiful boy. I will NOT give up and am petitioning the Lord to heal Edward and comfort Edward's family and friends during this very trying time. Praying is so very valuable. He healed my husband of Stage IV oral cancer. I do believe in the power of prayer. We who are praying believe God's angels are holding your hands and heart, Emilie. Hang on!
Dear Emily, Pastor Kameron and Henry, We continue to hold you in our thoughts and life you up in prayer. May God tuck you gently under his wing, provide strength for the moment - and draw close during your most challenging hours. Our prayers continue for Edward. Your family is precious to Jesus - and to us.
The stamina and faith that you & Kameron both demonstrate is an inspiration to us all. We pray for you all often. May God continue to be with you all through this experience.
Dear Pastor Kameron and Emily: Just a line to let you know that we pray for Baby Edward MANY TIMES everyday! We have faith that he will be well soon! We thank God for the courage he is giving you to deal with this difficult situation. God bless you and we love you! The whole church in Avon Park is praying for you!!!
Dearest little family...thinking of you daily, and keeping you close in prayer and in our hearts!love you!