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Ours is a story of hope...........Alyssa was a happy six year old soccer player who also had hopes of breaking the family tradition and becoming a cheerleader. She was very good at gymnastics until it started to make her dizzy. Then the headaches and the vomiting came. A trip for a head CT revealed the unthinkable. A BRAIN TUMOR! Had we had a crystal ball and been able to see into the future, we most certainly would not have been able to handle what was to come. We found out on a Friday and were immediately admitted into the hospital and scheduled for brain surgery on Monday!!!! It was all a whirlwind after that. The surgery was a success! They removed the whole tumor! We were told that they got it all, but it looked cancerous. The pathology report came back that it was medulloblastoma. Standard Risk. A very aggressive brain tumor and she would have to have radiation and chemo to have a 70 - 80% chance to survive. From the surgery, she had 6th Nerve Palsy. You know, her eye was crossed. She also had right side weakness of her body. She would have to learn to walk, eat and write again! Wow! Just the other day she was at field day at school, now this! 6 weeks of radiation! That's a 30 minute drive back and forth, every day (during the week - weekends off) to have your child strapped down to a table while their head is receiving radiation that could make them loose their hearing, have memory issues, cognitive problems, learning disabilities, make them bald (did I tell you she had long brown curly hair that was past her butt...and that I was so naive that I thought she might not loose all her hair! hahahah!) and countless other problems. Yes, we are subjecting our child to this knowing she could have multiple problems to save her life!!!! This is our only option.....! While this is going on, she started her chemo. 48 weeks of hell! Feeling awful! Taken medicine that is effecting her as we know her. Our happy child is now a shell of a body. Happiness gone. She lays, waiting to feel better. The chemo drugs make it hard for her to walk. Good old Vincristine. She has no reflexes! Chemo continues. Our now 7 year old weighs 32 pounds. She once ran fast. We had hopes of her being a track star! She can now barely walk from weakness. She does what she has too and works very hard doing school through a webcam when she can! She is lucky to have a great 1st grade teacher. Each time during hospital stays, her older sister comes along and sleeps on the floor of the hospital. We made her a bed out of the cushions from the chair. Dad sleeps on the couch there and mom curls up at the end of Alyssa's hospital bed with her feet on a chair. Her other high school, older sister stays at home while Gramma comes to stay at the house and take care of things on that end. This continues over the 48 weeks of treatment in and out of the hospital. Her treatments are almost done. She is to get her last dose. WHAT!? MRI shows something! What is it!? Necrosis or tumor? Hmmmmmm? Let's cut open her head again! Sorry, honey! Remember when we said we would celebrate your last chemo......well, now there might be something and they need to crack your head open again and see what it is! We are not done......the doctors are now using words like quality of life. WHAT! Do they not know she is healed! We are believers! The surgery happens! NO TUMOR! It is radiation necrosis! We are rejoicing! She has some trouble in the hospital with her nose bleeding. They can not get it to stop bleeding. It bleeds so much that they have to do a blood transfusion. They also cauterize her nose. That seems to help. The last chemo is not given and we are on the road to recovery.........radiation necrosis is still happening in her brain though. Doctors are nervous. Dyeing brain cells could be fatal. Let's try HBO! Hyperbaric Oxygen Therapy. 60 treatments! Yes, we want to have your daughter in a tank for about 2 1/2 - 3 hours a day and btw, it's a 40 minute drive downtown or longer....there might be traffic, to where you have to go. Yes, it will take most of your time up during the day but it needs done to save her life. Oh, also btw, it takes about a half hour to "go down" as they call it, to the level she needs to be at and also takes a about a half hour to "come Up". Add that to your time at the wound healing center. You know, the Lutheran Wound Healing Center, part of the Cleveland Clinic. Your child will be the first child that they have treated........It will take a about a total of 4-6 hours per day out of your child's life. Yes, 60 times. No, she won't be going to second grade during that time. Make sure she is not exposed to any glitter, lotion or static.......she could blow up in the tank! And if something happens to her, we can not get to her right away because she has to "come up." You remember, it takes about 20-30 minutes.........In an emergency, we could maybe get her up in 10! We are going to put her on steroids. She will have you cooking up a storm for wild cravings at all hours and she will gain so much weight so fast that she will not be able to move! You will have to turn her since she can't move on her own. Our now 8 year old weighs over 70 pounds. Her frail once only holding 32 pounds legs can not hold the extra added weight. She is now in a wheel chair! Mom has sprained her back lifting her. We will have to make arrangements for someone to be at the house when we go and come back from HBO to get Alyssa in and out of the car since mom can not lift her and Dad is now trying to get back to working consistently. He did take most of the past year off to be with his daughter during her treatments. He does have his own business and money is tight. He has to work! We'll have to make sure older sister or Gramma are at the house to lift Alyssa out of the car. The nurse comes out and lifts her out of the car into the wheel chair at HBO. Her MRI's show improvement and we continue with our 60 treatments! At the 59th treatment, Alyssa has a focal seizure in the tank. We (my mother and I) are watching a nightmare. She is seizing and they cannot attend to her until she "comes up." She awakes from the seizure and is still in the tank beating on the glass, screaming and crying! Horrified, we watch! They finally get her out. Her vitals are stable but she has lost her vision. We transport her from Cleveland to Akron Children's Hospital ourselves. I remember that drive. Jesus had the wheel. She undergoes a battery of tests. In a day of two she starts to see again! We are blessed! We are done with HBO. Alyssa continues to heal. MRI's are clear. She is will have PT and OT every week to try to regain walking and writing amongst other skills she has lost. She will need constant monitoring. She can not do anything without assistance. She will have to work hard!
It is now 3 years, 4 months and 21 days since her 1st surgery. Alyssa is 9 now and she is doing well in school and has learned to run again. She can almost skip. She is a happy 4th grader! She continues to have appointments to check on all the late effects that could happen from all the drugs and treatments that she received. She has MRI's every 6 months to see if there are any changes. Her most recent tests included adrenal function testing, EKG, echocardiogram and blood tests. She may have a lifetime of medical issues or not, but we are thrilled that she is alive! So far, we have been one of the lucky ones! Praise God!
Our life's are forever changed. We don't take life for granted and we are VERY thankful for each day! We try to not ask "Why". We just have to ask "What next?" How can we help? We hope that we can inspire hope!
I actually work in close contact with the Child Life Specialists and Nursing directors, managers, and nurses.. What kind of information should I ask them to include? Is there a handout or anything of the sort that has everything on it? (either that you have formatted or the site has).. If i have a physical document it would be easier to talk them into including! Let me know!
hey Deb... I saw your post in the Great Lakes group... I work at the children's hospital at the Cleveland Clinic in downtown Cleveland.. Who would i talk to about getting PAC2 info out? can you give me details?
I just got my call yesterday from ACH that my backround check is complete and they want me to call them Monday to confirm my first day. I'll be training on Mondays instead of Wednesdays to begin because they have no experienced helpers on Wednesdays where the need is. Once I finish training, I'll move to that day. Can't wait.
I am happy to have joined PAC, It takes me longer to do something because I have to mentally find time to sit down and digest everything. The last few days I've spent a lot of time on the computer reading about all the various members. Volunteering at ACH is the least I can do and hopefully only the first step. I pray to our Lord to give me the strenth to do more and more.
These children have won my devotion and the money I set out to donate each year will go to these efforts. Please help me by verbally letting me know when you are participating in something I can help with. You know how sometimes we can get on overload.
Thank for your note and I did want to ask if you are going to the ACH's Trees of Lights Festival? I've signed the volunteering sign-up sheet to help and I am thinking of Saturday Nov. 22nd. I want to bring Jesse with me to help. If you come, maybe you can bring Jenna. Just a thought because I don't know yet whether Jim will want to come or not.
Hey Deb...tracked you down since you are from OH....if I were living in your area....I would read this article and contact the reporter....tell him about PAC2 and wht we are doing...maybe he could do a follow-up article about how little attention is given to our kids!!! Just a thought...I would do it but I thought it would be better coming from someone more local than me! Here is the article:
Let me know how it goes if you decide to do it!
Glad to hear alyssa continues to do well....
Hi, thanks for requesting me as your friend - you are officially my only friend so far! I'll get the hang of this, need to spend a bit of time navigating around. Glad to read updates on Alyssa, isn't it reassuring to know that symptoms could be expained by other "normal" things? Have a great day!