Hi everyone, I'm new to this site. I'll start with how everything started. First off I'm a 27yr old separated mom of 3. My kids are Jazmine, 7, Elise, 4, and Elijah, who is 3. Elise is my little miracle. She has been so strong through it all. Let's see.... last year on Wed. May 7th is when Elise first got sick. She was vomiting a lot so I took her to her doctor. They said it was just a stomach virus, she had no fever or any other symptoms and that it will pass in 3-4 days. So I took her home. By Friday she couldn't keep anything down not even water so i took her to the ER. They gave her an IV to hydrate her, did bloodwork, tested for infections, and did x-rays of her stomach. 5 hrs later everything came back normal so they gave her zofran and some sent her home. Saturday she was even worse, now she was just dry heaving all day long so i took her back to ER. They did the same things as before plus an ultrasound of her intestines. Still nothing. We went home again. She is still vomiting, and I don't mean like 1-2 time a day, no now it was 6-7 times a day. Everytime she drank or ate anything she would throw up 5- 15 mins later. On Sunday she slept almost all day long. I would wake her up to try and drink or eat popsicles. Still vomiting.
By then I had no idea what to do. I just let her sleep. Monday morning I got woke her up early to take her back to the ER, before i could even get her dressed she started vomiting up nasty, foul smelling green stuff. When she tired to walk she had no balance and kept falling. I called her father to come take the other kids to school and daycare, then I took her back to the ER. I was not leaving until they found out what was really wrong. So they did a CT and my world crumbled. They told she had several tumors in her brain and a few on her spine. She had never been sick in the whole 3 yrs she'd been alive, only a cold maybe twice a yr. I thought they were dumb and made them get several different doctors. They all said the same thing. So they transferred us to Children's Hospital in DC. She was immediately put in icu. By Wed. she was having seizures. They said that the largest tumors were blocking her spinal fluid from draining which was causing pressure on her brain. That's what was causing all her symptoms. They put a drain (a shunt that's on the outside) in her head. A couple days later they took the drain out, did a biopsy, and put in a permanant shunt. She was diagnosed with Primitive neuroectodermal tumors (PNET). I was going crazy with worry and stress. Everything was happening so fast. I still couldn't get a grip on anything. When she came out of surgery she was worse. Now she couldn't even move her legs or sit up without help. Now i'm like Lord what did they do to my baby! They did another MRI and said it was caused from all the pressure and that she regain her mobility back in time.
Next they put in a double lumen broviac so she could start her chemo. Now that was just terrible. She had 6 rounds of high dose chemo with stem cell replacement. She had terrible side effects. On the night of her 1st day of chemo she got really sick, she became non-responsive to everything, and her eyes rolled around in her head, you know i was in a panic. they rushed her to icu again and gave her some meds. They added triple the amount of sodium to her fluids from then on. Throughout her chemo she had mouth sores, hair loss, nausea and vomiting, and severe diarrhea, she wouldn't eat, infections, headaches, pain.... It was really bad. They put in a feeding tube plus she would get blood and platelets every week, sometimes twice a week. It was horrible. She was also extremely tired and wanted to sleep all the time, which was hard because she had PT and OT each 2x a day. We spent the entire 6 months in the hospital. But through it all she was as sweet as can be, and when she was up to it she fell in love with painting. I also tried to get her to play anything that i thought would make her happy. She always tired to perk up when the family came over. She was and is still a strong child.
She had about a 3wk break after chemo before her radiation. By that time we got her walking again and she was even running a little and her feeding tube was now gone. Her balance was almost completely back too. Next was radiation, Mon-Fri. for 2 1/2 months. Her radiation went smoothly, her side effects was mild. She just ended her mandatory 3 mth break and has recovered almost fully from everything. She still has a few small tumors left and just started a low dose oral chemo regiment (she gets to be home this time that she will be on for the next 6 months. She has been blessed to have made it this far!!! The doctors told us in the beginning that she would have a 5% chance of beating this cancer. But I thank the Lord because she is here and doing good!!!
MAW has granted her wish to see Cinderella. We are going to WDW in May and will be staying at GKTW. We are all excited. It is a well needed vacation for all of us. I do have a question. My kids and I live with my parents plus my 12 yr old nephew. MAW is paying for me and my 3 kids, and since i'm a single mother they are also paying for my mother to go too. I have been looking for a vacation package that is the same that GKTW gives that is affordable for my dad and nephew so that they can enjoy everything that we get to. So i haven't any luck. Does anybody have any suggestions? Thanks
Sorry this is so long. But I always tell everything so people can know just how far Elise has made it with God's help. I will try and load some pics of the family.
By then I had no idea what to do. I just let her sleep. Monday morning I got woke her up early to take her back to the ER, before i could even get her dressed she started vomiting up nasty, foul smelling green stuff. When she tired to walk she had no balance and kept falling. I called her father to come take the other kids to school and daycare, then I took her back to the ER. I was not leaving until they found out what was really wrong. So they did a CT and my world crumbled. They told she had several tumors in her brain and a few on her spine. She had never been sick in the whole 3 yrs she'd been alive, only a cold maybe twice a yr. I thought they were dumb and made them get several different doctors. They all said the same thing. So they transferred us to Children's Hospital in DC. She was immediately put in icu. By Wed. she was having seizures. They said that the largest tumors were blocking her spinal fluid from draining which was causing pressure on her brain. That's what was causing all her symptoms. They put a drain (a shunt that's on the outside) in her head. A couple days later they took the drain out, did a biopsy, and put in a permanant shunt. She was diagnosed with Primitive neuroectodermal tumors (PNET). I was going crazy with worry and stress. Everything was happening so fast. I still couldn't get a grip on anything. When she came out of surgery she was worse. Now she couldn't even move her legs or sit up without help. Now i'm like Lord what did they do to my baby! They did another MRI and said it was caused from all the pressure and that she regain her mobility back in time.
Next they put in a double lumen broviac so she could start her chemo. Now that was just terrible. She had 6 rounds of high dose chemo with stem cell replacement. She had terrible side effects. On the night of her 1st day of chemo she got really sick, she became non-responsive to everything, and her eyes rolled around in her head, you know i was in a panic. they rushed her to icu again and gave her some meds. They added triple the amount of sodium to her fluids from then on. Throughout her chemo she had mouth sores, hair loss, nausea and vomiting, and severe diarrhea, she wouldn't eat, infections, headaches, pain.... It was really bad. They put in a feeding tube plus she would get blood and platelets every week, sometimes twice a week. It was horrible. She was also extremely tired and wanted to sleep all the time, which was hard because she had PT and OT each 2x a day. We spent the entire 6 months in the hospital. But through it all she was as sweet as can be, and when she was up to it she fell in love with painting. I also tried to get her to play anything that i thought would make her happy. She always tired to perk up when the family came over. She was and is still a strong child.
She had about a 3wk break after chemo before her radiation. By that time we got her walking again and she was even running a little and her feeding tube was now gone. Her balance was almost completely back too. Next was radiation, Mon-Fri. for 2 1/2 months. Her radiation went smoothly, her side effects was mild. She just ended her mandatory 3 mth break and has recovered almost fully from everything. She still has a few small tumors left and just started a low dose oral chemo regiment (she gets to be home this time that she will be on for the next 6 months. She has been blessed to have made it this far!!! The doctors told us in the beginning that she would have a 5% chance of beating this cancer. But I thank the Lord because she is here and doing good!!!
MAW has granted her wish to see Cinderella. We are going to WDW in May and will be staying at GKTW. We are all excited. It is a well needed vacation for all of us. I do have a question. My kids and I live with my parents plus my 12 yr old nephew. MAW is paying for me and my 3 kids, and since i'm a single mother they are also paying for my mother to go too. I have been looking for a vacation package that is the same that GKTW gives that is affordable for my dad and nephew so that they can enjoy everything that we get to. So i haven't any luck. Does anybody have any suggestions? Thanks
Sorry this is so long. But I always tell everything so people can know just how far Elise has made it with God's help. I will try and load some pics of the family.
