Zach's Mom Posted December 27, 2006 Share Posted December 27, 2006 Hello. My name is Susan, and my son, Zachary, is a patient at Texas Children's Hospital in Houston. Zach had surgery on Oct. 9 for a brain tumor - medulloblastoma. The sugery went well and he was moved to a regular room after 5 days. That night he had a bleed and had to have more sugery. That went well, but he was struggling to breathe and was placed on a vent. Five days later he had a HUGE bleed and had to have a third surgery to evacuate the blood. He apparently acquired a bleeding disorder of unknown origin. The three surgeries in the area of the cerebellum took their toll, and three or four days after the third surgery he became completely unresponsive. MRI showed his brain stem was very swollen, and the surgeons were concerned about a stroke in that area under all the swelling. Zach remained in a coma for five full weeks. Then he began to open his eyes and move his fingers a bit. After a few days we had a setback - nine grand mal seizures and a trip back to ICU. They loaded him on Dilantin and no more seizures. We are in a step down unit now. Zach is very stable. He is doing trach collar trials and we hope to have him off the ventilator shortly. He is able to move his finger and toes, but the movements are weak. With stimulation like a massager or range of motion exercises, he can make bigger movements, but they are not consistent. When he concentrates very hard he can move his head from side to side a little bit. The last MRI, about 4 weeks ago showed that the brian stem is still 30% swollen. He needs his radiation for the cancer, which has progressed a bit, but the radiation oncologist felt that radiation at that time would fry his brain stem. So we started him on a milder chemo (etoposide), which is oral, for 21 days to try and buy some time. He is tolerating this well. We will have another MRI the second week in January to see if the chemo worked (just keeping the caner at bay would be great). It will also show the condition of his brain stem and possibly the extent of the damage. They are almost certain he had a stroke in his brainstem and that there will be permanent damage. Zach wakes and sleeps normally now. His pupils are reactive to light. He is a bit ticklish again. He can twitch a finger for "yes" and a toe for "no", so we are able to communicate with him to some extent. He has been on the tilt table and is sat up on the side of the bed by the PT/OT team almost every day. With extreme coaching he can kick his legs out a bit. He has nystagmus, so blinking isn't working real well as far as communication goes. His ROM is good. He can read off of a dry erase board and follow simple directions, like "move your finger" to watch a certain movie. He seems to really pay attention to television. His body movements do not seem to be progressing, however. We are desperate for information. Our hearts are broken. Our son seems gone sometimes, and he still has this awful, agressive cancer to fight. He can at least twitch most of his muscle groups when we ask him to. PT/OT are using electrical stimulation pads to get him moving a bit. One neurologist told us that if Zach were his son, he WOULD NOT TREAT THE CANCER. I can't do this! We don't know how much he will recover. What if he recovers and then dies anyway because we didn't treat the cancer? They thought he would never open his eyes or move again, and he has proved them wrong. I would appreciate any comments you guys have about how he might progress. His movement are so small. Can we expect them to get stronger? When??? I know that no one has a crystal ball, but any comments would be so greatly appreciated!!!! Susan Link to comment Share on other sites More sharing options...
rdittman Posted December 27, 2006 Share Posted December 27, 2006 Hi Susan, I am sorry to hear about your son Zach. Your family is going through a horrifying ordeal, but it is good your son has movement. The fact that he does pay attention to things is good as well. I don't have any real words of wisdom for you, but others here may be able to offer advice, or where advice may be obtained. Welcome to the StrokeNet Message Boards. I will be praying for your family and situation. Bob Link to comment Share on other sites More sharing options...
jriva Posted December 27, 2006 Share Posted December 27, 2006 Susan, Your situation is so heartbreaking it's hard to know what to say. The difficult choices you have before you cannot and should not be made by anyone else but you and your family. With a brain tumor/aggressive cancer and a devastating stroke about the only thing anyone can really do to help is to pray for miracles for your son and strength for your family to get through the tough days/weeks/months ahead. You will certainly get plenty of prayers and healing thoughts sent your way this site. If you have a social worker at the hospital, they can often be very helpful as a sounding board if you need someone to talk to one-on-one who isn't emotionally involved. She or he can also hook you up with a family counselor. I highly recommend counseling to help hold you together while you deal with the gravity of your situation. Please keep us posted and come back whenever you need virtual hugs. :friends: Jean Link to comment Share on other sites More sharing options...
Guest ssnow Posted December 27, 2006 Share Posted December 27, 2006 Susan, My thoughts go out to you & your family. Like everyone else here at Stroke Network, we I will be thinking & praying for you & Zach. Keep us informed of his progress & know that you have the support of all here. Regards, Sarah Snow Link to comment Share on other sites More sharing options...
tom71 Posted December 28, 2006 Share Posted December 28, 2006 Susan, Welcome to the site! I'm so sorry to hear Zach is going through this terrible illness,I'll be praying for Zach and your whole family. God Bless You all, Tom Link to comment Share on other sites More sharing options...
Phyllis4732 Posted December 28, 2006 Share Posted December 28, 2006 Not only are you dealing with one devastating illness. but two. Please know that my prayers are also going to you and your family and/for your son. Link to comment Share on other sites More sharing options...
swilkinson Posted December 28, 2006 Share Posted December 28, 2006 Susan, add my prayers and those of my husband and stroke survivor Ray. It is so hard to watch your children suffer and my heart goes out to you at this time. As others have said, whatever treatment Zach needs is a decision your family will have to make together. Can you get a team together to at least do range-of-motion therapy with him? And maybe some friends who "talk the talk" to come in and be with Zach for a while when you need to go for a coffee or take a break? It is so important for the family and caregivers to take care of their own needs as well. There is Caregiver chat on Tuesday nights and a lot of people to support you and your family here. Sue. Link to comment Share on other sites More sharing options...
fking Posted December 28, 2006 Share Posted December 28, 2006 Susan, I offer my WELCOME for you and Zach to this site and my prayers for him and your family during these trying times ahead. Here's hoping the medical personnel will find the information and comfort you need during this time. Texas Children is a great hospital among many in the Houston area. Link to comment Share on other sites More sharing options...
bstockman Posted December 28, 2006 Share Posted December 28, 2006 Hi Susan, Welcome to the site.. So sorry you have to be here. Add my prayers and warm thoughts to the list of all the others. You may want to have a consult with your family and Zac's Doctors. ask the neurologist to explain why he said he would not treat the cancer. Does he think it will be to hard on Zach at this point or to risky? You need all information to make a decision. I pray for strength for you and your family. Link to comment Share on other sites More sharing options...
Guest hostmel Posted December 28, 2006 Share Posted December 28, 2006 Hi Susan - welcome to the site, although I am very sorry that is because of Zach's illlness. I can understand some of what you are going through but, of course, not all, I am a stroke survivor bu I am also dealing with the "wait and" see approach with regard to a growth on my 12 yr old daughter's brain. No seizures, just migraines at this point. At least they know what is wrong with Zach - they still have not diagnosed Kylabut we go back for our third MRI w/contrast in May, then if we have any changes or additional growths things will procede from there. I think it's great that you are at a children's hospital - they usually have the absolute best people available. I agree with Bonnie - have a family consult with the neurologist or a "patient care" meeeting(that's what they called them when I was is subacute) here all the doctos and the nurses have a brief inventory like meeting which might help you to puzzle out the answers you need. If you are unable to get the answers you need then I would go to the Hospital chaplain and ask for help - many times the chaplain's have insight that you will not get from another admnistrator - and, if nothing else the chaplain is alays great to have as a mediator of information. I so much wish you the very best - it's hard when we ourselves are sick, but when it's our children, look out for Momma Bear! Prayers and blessings to you. Every moment and small improvement is a huge victory - don't ever doubt that - and keep track of them so that you can rember them later if progress starts to slow. You will always have friends here and an open ear - plese let us know how he s doing and take us along on your journey - we alays listen to vent sessions:) Again, a very warm welcome and please do join some of our chats - especially Sue's for caregivers - she's our favorite aussie caregiver hostand it really does help to talk to those going through the same thing. Link to comment Share on other sites More sharing options...
Guest veggie.vampire Posted December 28, 2006 Share Posted December 28, 2006 I had my stroke during chemo so partly understand what you face. Doctors told my husband if I survived which was highly doubtful, I'd never do more than blink. Well they were wrong and can be again. I spent 2 months only able to blink but nearly 2 years on am cancer free and writing this left handed and have walked with help. Do treat the cancer, you're doing the right thing. Best of luck, hope he wins this battle. Link to comment Share on other sites More sharing options...
kkholt Posted December 29, 2006 Share Posted December 29, 2006 Hi Susan, My heart goes out to your family. You asked about possible progress for Zach, the same question we have all asked for ourselves. The very frustrating answer is, everybody is different, and we can only share what has happened to us. My husband had a stroke 16 months ago, and continues to make what I would consider significant improvements. It has taken 16 months to go from not being able to walk, to a wheelchair, to a walker, to a cane..... and last month, he quit using his cane except for very long walks. He went from what I would consider serious short-term memory issues after his stroke, to complete recovery of his memory today. Although his language loss was not very significant, regaining what he lost in that area has been the slowest. The best advice somebody on this board gave me was to measure your gains, from after your stroke, and not before. Pointing that out to my husband, always brings a smile to his face - when he remembers what it was like right after his stroke in the hospital, compared to how he is doing today. Healing thoughts to you and your family. We're here for you. -Karen Link to comment Share on other sites More sharing options...
mikisteph Posted December 29, 2006 Share Posted December 29, 2006 Hello Susan, listen to Di, she has been there and come through, doctors do not know everything for some obscure reason when it comes to brainstem strokes they are more often wrong than right. I wish you and Zach all the best but please keep us informed of progress. Mike Link to comment Share on other sites More sharing options...
shakeyleg Posted July 4, 2007 Share Posted July 4, 2007 Sorry to her about your son.My thoughts and prayers are with you. Take Care Kelly a.k.a. shakeyleg Link to comment Share on other sites More sharing options...
merichsen Posted July 4, 2007 Share Posted July 4, 2007 Susan, Welcome to the site. I will echo the thoughts of those who have posted before me, and also wanted to let you know that I as we all will keep you, your family, and Zach in our thoughts and prayers. :friends: Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.