♡Stephen♡__________________________________________________________________________________Reagan Created a card for Stephen, a seven year old boy who recently was diagnosed w/ the Big C! Stephen is a friends cousin. He was having a pretty bad headache and problems with his vision. His parents brought him to the doctor and after tests and things...well the result is really bad!
From this boys father:
Pathologist cell study confirmed the brain stem glioma and it’s a severe type and is very advanced (they will get confirmation from sloan kettering by Monday and we can also send to whoever we want). I believe in miracles and will not stop seeking the Lord for one until it happens either on earth or in heaven. We are hoping to bring him home on Monday and I will go talk with others for treatment options. But what the one neurologist told me is that no one (besides from a miracle) has survived from this. Tara and I will send an update out to all when we get to it.
Thanks for all you support and continued support!
Please Pray fro Stephen and his family!
UPDATE: From Stephens Family in regards to his condition.
PLEASE CONTINUE TO PRAY FOR A MIRACLE♥
UPDATE: From Stephens Family in regards to his condition.
PLEASE CONTINUE TO PRAY FOR A MIRACLE♥
Hello all, we are so sorry it has been such a long time since either Stephen or I have updated. It has been such a difficult week. We are still loving God as much as we did probably even more so than when this horrible situation with little Stephen began. Our faith is just as strong regardless of the outcome. We know God has us all in his hands. I will begin with Monday and Wednesday for our personal meetings with doctors.
2/21/11 Monday was an extremely hard day for us as Big (this is what our family calls big stephen) and his dad went for another opinion to CHOP. They were 100% positive that yes, Stephen for certain has diffuse intrinsic pontine glioma,high grade glioblastoma. There is no cure for this horrible, evil and cruel form of cancer. The word cancer in itself is so difficult for me to even say, that I choose to just say the tumor. Our son has been diagnosed with the worst possible form of cancer a person could have. 2/23/11 Big asked me to go to NYU for another opinion and for me to hear it for myself since I have not been with him on all of the other meetings and phone consultations. My mom and father-in-law went with me and I was even more heartbroken after meeting with him. Apparently the mass that was floating and was taken out and the other mass that is still in Stephen floating around is not a good thing, as I thought maybe the cancer had only been there and not really in his brain stem. I was very wrong. It means that the cancer has spread beyond all of the brain barriers and is on a mission to take over his poor body. Seeing the doctor go through the MRI's from one week to the next was excruciating to say the least. To see this thing grow so rapidly inside my sons head was beyond painful. Knowing there is nothing we can do to get rid of it. The tumor within his pons is growing so big and pushing out so far. Big has also spoke with St. Judes and other renowned hospitals that have given the same exact treatment options and trials. There is no human treatment with hope and no guarantee to prolong Stephen's life, which they have no time frame. Could be a month, could be several months. He would endure 6 weeks of daily radiation treatment. Which would entail him being sedated daily and having a new port put in by his heart and multiple MRI's. There are side effects that as always come along with radiation like vomiting and pain. There is also a good chance that after going through radiation it won't respond and he would go through more torture for nothing. Stephen is not a child who could handle something like that and Big and I do not believe in suffering just to possibly prolong things to only have to get back to this point again. He went from playing and running like every other boy 3 weeks ago to within a few short hours being bedridden. He can not walk, can barley talk and when he does, he doesn't understand why we can't understand him. Every simple thing that you and I take for granted (like eating, drinking, holding things, writing, going to the bathroom, etc.) has become extremely difficult to him. His brain is thinking clearly, but his motor part is not working. He does not know that he isn't speaking correctly. This whole process just makes me weep. He is very shy and does not like any attention so something like us trying to figure out his words makes him feel so bad.
After coming home last night and Stephen wanting to go back to the hospital because the realization that he is home and his sisters are running around and he is still not well and getting worse has hit. His ears are very sensitive and high voices bother him. I had a very hard time in knowing we were coming home too. It meant that this is real and that my child does not have an infection. Monday was another blow and another worst day of my life feeling. I was really starting to panic at the hospital and go a little "crazy" to say the least. This feeling of no control is a horrible one. He is still very depressed, but on Tuesday we spoke to the Ugly Doll Factory President and they were so wonderful in letting Stephen come visit them. It is not open to the public and they were so generous to us. Stephen was happy to have seen where the Ugly Dolls are stored and even more happy to leave with a bunch of his favorite things! I am so thankful to them for allowing us to visit. They were more than accommodating and more than wonderful to us! Thank-you Jesus for allowing this to happen!
Thursday was a great day in that Stephen was baptized!!!! Pastor Brennan came out and asked Stephen if he wanted to be baptized and he said yes! We are so very proud of Stephen for wanting to profess his faith in Jesus! Pastor Marsha came out as well and we are so thankful that we have Pastor's who care so much about our family. Talking to Pastor Marsha basically daily has been very important to us!
Friday we had a follow-up visit with the Valerie Center in Morristown to make very important decisions. Stephen was seen by the oncologist there and he has gone down hill significantly over the past few days. His respiration has gotten very difficult. After a very long and emotional few days we have decided against radiation. We know that we are making the right decision. There is no surgery, no pill, no radiation, no chemo drug that will cure this. He is not in the early stage of this horrific disease. He is in the end stage and has spread rapidly. Stephen has the worst case scenario. The only cure is in God and God alone. We are still asking God for our miracle. We are still crying out to him daily and we know that He can do anything! We have after looking into many alternative treatments like Germany and the Bruzinski clinic, decided to begin the alternative treatment called the Cellect-Budwig Protocal for Stage 4 Cancer. Big has also spoken directly with the person who wrote this protocol and is guiding us in this treatment. We are enthusiastic about this! God made the earth for us to enjoy and we believe in natural healing and are still looking into additional alternative treatments! Let the process begin!! Another highlight was Make-a-Wish coming so quickly to our home and planning our Disney trip early this next week coming up. Stephen's dream is to get on an airplane. He has always wanted to and now he will! We are not sure of the exact dates as they are moving as quickly as possible. We will let everyone know a/s/a/p. The doctors have given Stephen some super steroids and some other meds to keep him as strong as possible for the trip.
On another note, Stephen also talked us into two guinea pigs. One for him and one for his sister Thea. Before his surgery his doctor asked him if he wanted a pet and that mommy and daddy should get him one. I explained that we have a dog, but she told Stephen he should ask for one anyway. Well, the ride home from the hospital Friday he certainly remembered! So now, we have welcomed Rex and Toad into our home. Even though I am against rodents, I have to say that they are awfully cute.
2/26/11 Saturday was a good day. The steroids have kicked in a little as Stephen's voice is slightly louder than it was. He is also starting to be able to urinate on his own. He was having a very difficult time. He was so happy and we actually saw his left side mouth go up in a smile like form (he physically can not anymore) when his Aunt Tarra and Uncle Tyler brought him a beautiful Fish Tank and set it up perfectly in his room. Aunt Tarra's vision was right on! It was exactly what Stephen always wanted. Lobster and all! We are so thankful to everyone who has sent Stephen goodies, cards, presents, etc... We could not get through this with out all of your help as the pain is unbearable. We are so blessed with all of your generosity and fundraisers that continue to come in! We will continue to update you as much as possible! Please, please, please do not stop your prayers to God! We know He is listening to all our cries and we are still asking and believing for a complete healing! What a miracle this would be!
Also all our posts are getting put on a great website family and friends have setup for us. Please visit www.stephenaustinmiracle.org if you haven't already. Post may start to get put directly on there instead of emails, but someone will let everyone know if and when this happens.
Tara, Stephen and the Fantastic Four!