It’s been an emotional few days.
Yesterday we got news (finally) that we were approved for 24 hour home nursing care for Charley for 60 days. Which is AWESOME – Ezra has so many appointments and it’s so incredibly difficult to be both a parent and a nurse to both of these kids at the same time on top of handling the emotional load – we really need the extra set of trained hands around the house. Some of our friends have been around helping and we’re so grateful. I haven’t done much work at all the past week trying to help Robyn out, and she’s pretty much at wit’s end trying to carry around the whole of Charley and his wagon full of medical equipment and pay attention to a clingy Ezra as well. Leaving the house is still very difficult strapping all the equipment in and watching both kids.
Our first nurse got to the house today at 7 and is watching Charley all night – so I have time to write to you while Robyn eats her 1st actual meal of the day.
Ezra has been very clingy and seemed uncomfortable the past 7-10 days, so we’ve been anxiously awaiting these scans. He had scans today (a CT and the injection of a contrast for his MIBG scan tomorrow) and has one more tomorrow (the MIBG scan). The results are not good. We haven’t got the results of the MIBG scan obviously since it’s tomorrow, but the CT results are back and bad. The tumor on his face has grown larger than when we started chemo last round (Sept 8th), and has progressed toward his brain. There is also a new lesion (read: cancerous mass) near the back of his head. His abdomen has many new tumors which are all growing and were not there when he started chemo. His counts are not staying recovered as they should be by now, showing his bone marrow is still involved and the cancer is not dying there.
Essentially, while it initially looked like he had a positive reaction to the chemo, it turns out to be extremely short lived, to the point his cancer is termed non-responsive to this chemo.
This means there are only a few drugs left to try, and all of them are less aggressive than the one we just tried.
Dr Nieder has recommended we try a trial using a drug called Nifurtimox (http://www.nmtrc.org/phase-ii-nifurtimox/) which is showing extremely promising results with neuroblastoma and is being run in Orlando (and a few other hospitals across the country). We will be mailing all our scan results to NY as well as Orlando tomorrow (and we’ve already been on the phone with them) to get both of their expert opinions, but it looks like this may be our next step. There have been multiple patients who tried this and have been living over two years on it before relapsing. Remember, after the relapse Ezra was given 5-7 years of “prolonged life” IF and ONLY IF we got a response to this chemo – which we did NOT it turns out. Nifurtimox has been around for decades, but mostly used in Central and South America to treat parasitic infection. A young girl in the US a few years back happened to have neuroblastoma and got a parasite, and also happened to be treated with Nifurtimox. Her tumors went down considerably, and thus this study was born. It’s been doing very well in 70-80% of it’s recipients.
We had a long conversation with a few doctors today, and we are really putting our hope in this trial in Orlando, perhaps something crazy from NY we haven’t heard of yet, or God doing a miracle (never out of the question). When it comes down to it, his cancer is EXTREMELY aggressive, and is growing even DURING chemo now. The incredibly hard and painful truth is if the trial is not effective and the cancer continues, Ezra most likely only has 2-3 months of life left.
Please keep praying.
Our sincerest and most heartfelt prayers go out to you and your family. God grant you all peace, comfort, and hope in your endeavors to find some resolution to your children’s illness.
I CANNOT imagine how you & Robyn must feel. I can’t even fathom your pain or anxiety. My heart aches for your little family! But I will not stop praying or give up hope!!! My heart goes out to you & i will pray for Ezra even more!
I am praying for you even as I write this. I have followed your story through my cousins and their friends who attend Grace, and I have been praying for your family since I have found out. My own sons are also 2 and 1 years old, and everytime I look at them I will be reminded to pray for your precious bundles of joy!!!!!!!!
My kids have your bracelet and wear it ever day. You are in our prayers.
Bring together some elders of the church to the hospital or where each of you are, join hands and hearts and pray strongly for them. Miracles happen every moment of every day, and God is with each of you!
Yours in Christ,
Marsha and Amy Hubert
We will continue to hold each of you in our prayers. May God bless you!
Dearest Kyle and Robin,
Our love and prayers are with you – hope to see you both very soon.
Blessings, peace and confront be with you.
My baby girl was diagnosed with a terribly aggressive and hard to treat form of cancer (JMML Leukemia) at 1 year old. At the time they gave her a 20% chance of survival. At one point she was in a coma for 6 weeks. it was grim. Baylee just recently turned 3 and is now a happy, and very healthy, 3 years old and in remission for close to 2 years. Never underestimate your own strength or the power of prayer. Me and my family are sending plenty your way. Keep on keeping on!
We will not stop praying for you guys. I know that God is faithful. He will not leave you now. We are with you in solidarity, Kyle and Robyn. God is still good. I know you know that.
Your story is both heartbreaking and encouraging. I attend GFC and was forwarded the link to your blog today by my friend and small group leader. It turns out that my sister works at Memorial Sloan Kettering in New York and perhaps could be a resource or provide some kind of assistance for you. If you would like to contact me so that I may share some information with you and can put you in touch with her, I would be absolutely overjoyed to help in any way. I have already reached out to her and forwarded her this link to your blog. I assume that you will get my email address with this posting and I will also reach out through my small group leader. We will lift your family up in prayer.
We will be praying for your precious babies and ya’ll! May god place his healing hand on Ezra and Charley!
You guys are in my prayers. Please keep the hope alive. God does miracles and I believe that he will intervene for Ezra. Please, if you need anything at all, do not hesitate to contact me, my email is lizddy@hotmail.com. God bless.
Lizddy
There is a risk of having everyone laugh at this but that’s fine; I will take that risk for Ezra. I am an RN Holistic Family Wellness Consultant. There are a # of amazing reports of cancer cures related to puree asparagus. What would it hurt to try? Steam or boil asparagus to the point of fork-tender then puree it. The adult protocol is 4 tablespoons in the AM & 4 tablespoons in the PM. Some folks eat it as the puree, others add water and drink it. I suggest you do whatever it takes to make it palatable for Ezra. Do it every day for as long as you can, barring any nausea from his other treatments. That said, Dear God, You willed little Ezra into this world. You are all perfect and cannot make an imperfect creation. So, I take power and command over this evil spirit of illness and in the Name of Jesus I command it to leave Ezra. I send you, spirit of illness, back to Jesus to do with you what He wishes. In your place we pray all the peace, love, joy, and health of Jesus’ ressurection power!! Dear God keep this family strong. They must be very special for you to have chosen them for this mission!
My thoughts and prayers ar with you and your family.
God Bless you and your family, and you are definitely in my prayers!!
Hey Kyle, It is amazing how courageous you and Robin are through this unbelievable trial in your lives. You inspire us all that we are stronger than we think. We are praying for a great miracle for Ezra. We do serve an awesome God and I know he loves ya’ll so much. LaFaye and E.T. Tapper
Know that you and the family are being prayed for by friends of friends…of friends.
Our prayers are with you! My heart breaks for you and for little Ezra. May God hold you close and may the Holy Spirit comfort you.
Kyle and Robin,
When having done all to stand…… stand. You are living examples of that….. “Be still and KNOW , I am God”. I love you both, and my church will be praying for You and Ezra and Charley.
Praying for you all
God Bless
I have seen the requests for prayer for your family on facebook and I often think of you and pray that God will heal your children, give you strength for each day and provide comfort to you as you care for your children. I can’t imagine what it must be like for you….our children are so precious to us and we want to protect them from harm – may God’s peace surround you and know that He loves you and your dear family!