I know I have been a little lax on keeping up the blog but somedays there just seems to be to much going on for me. Let's see...A week ago Ily went in and had the feeding tube put in her stomach and that went very well. They began her 2nd round of chemo and that was going quite well. It seemed that things were going to be easier for her this time than they were the first time she went through this.
Ily was suppose to come home this week but she wasn't keeping anything down. Last night she her lips and tongue turned purple and she started to shake. Turns out she had a fever.They did some tests and she has a bacterial blood infection. How? No one knows. Today her fever has been high and they have just informed her Mom and Dad that she has a blockage in her intestines. This poor little girl is going through so much. Tomorrow if she is not any better they will be moving her into ICU.
Please say a few extra prayers for her and her parents. They are going through a hard time right now. We Thank you for all your good thoughts and prayers that have already been sent.
Ilyanna is Doing Wonderful
Ilyanna is doing wonderful. She has been home for the past few days visiting her family. Laughing and doing her High 5's that she so much loves to do. Her blood platelets are up where they should be and she seems to have so much more energy than she had.
Ily is going back into the hospital today to have her feeding tube put into her stomach as she has a tendancy to pull it out. How long she will be there I don't know. She has two more rounds of chemo to go so whether they will do the next one right after this surgery we will find out.
The family would like to say " Thank You" to everyone who has been praying for Ilyanna and sending things to the family. Their are not enough words to express how much they appreciate it. Please keep the prayers going as this is just the beginning and we have such a long way to go.
Few Days of Catching up To Do
Oh where did I leave off..Ilyanna had gone back into the hospital. They felt her fever was caused by a stomach bug.So they put her on a antibiotic and pedialyte for a few days. The one thing I can't understand is we can put a man on the moon but we can't make tubing that doesn't get holes in them, especially for an 8 month old. Ilyanna got a hole in her central line somehow so needless to say she had to have surgery again.They were a little leery as her blood count was so low and she was so weak but of course their really was no choice. They did it and she came through fine.
Our little cutie is now losing her hair..mostly on the sides as that is how she lays in the crib.She is still adorable. Ily once again pulled out her feeding tube..the hot ticket but when her blood count goes up they are considering putting one through her stomach so that she can't keep pulling it out.
She seems to be doing a little bit better. Her eyes are not as droopy as they were. Her Grandma from Brazil is arriving here on Tuesday to see her for the first time so that will be exciting.Actually it will be exciting for all of them.Christina has never met her Mother-in-law, Thiago has not seen his Mom in 5 years so it will be a wonderful day.They all deserve it.
Ily's Aunt Cindy made this beautiful tape that is on you tube for Ilyanna. Please watch:Cindy Jewell http://www.youtube.com/watch?v=cCmN4YlGf
Our little cutie is now losing her hair..mostly on the sides as that is how she lays in the crib.She is still adorable. Ily once again pulled out her feeding tube..the hot ticket but when her blood count goes up they are considering putting one through her stomach so that she can't keep pulling it out.
She seems to be doing a little bit better. Her eyes are not as droopy as they were. Her Grandma from Brazil is arriving here on Tuesday to see her for the first time so that will be exciting.Actually it will be exciting for all of them.Christina has never met her Mother-in-law, Thiago has not seen his Mom in 5 years so it will be a wonderful day.They all deserve it.
Ily's Aunt Cindy made this beautiful tape that is on you tube for Ilyanna. Please watch:
Cindy Jewell http://www.youtube.com/watch?v=cCmN4YlGfcQ
Ilyanna returned to Hospital Today
The whole family was so excited yesterday that Ily finally came home.I think that was probably just being a little selfish of us because that is where we wanted her to be.Everyone of us knew she was still very ill but she was closer to us.
Christina said it was harder than she thought it was going to be. Ilyanna was not peeing like she should and had a small temperature. She was not even SMILING !!
The Visiting nurse came and she called Children's Hospital and Ily was dehydrated and by the time they got there her temperature was even higher. They decided to admit her back in.
The last report I got from Ily's Grand mom at 8 pm was they had done blood tests,given her fluids,but she has yet gone pee at all. Her temperature has come down.
So please..put her in your prayers. If anything new comes about I will add it to the blog.
Christina said it was harder than she thought it was going to be. Ilyanna was not peeing like she should and had a small temperature. She was not even SMILING !!
The Visiting nurse came and she called Children's Hospital and Ily was dehydrated and by the time they got there her temperature was even higher. They decided to admit her back in.
The last report I got from Ily's Grand mom at 8 pm was they had done blood tests,given her fluids,but she has yet gone pee at all. Her temperature has come down.
So please..put her in your prayers. If anything new comes about I will add it to the blog.
Our Precious Girl Came Home Today
It has been a long week. Every day we thought would be the day when Ily would come home and something would come up and it just wouldn't happen for her. She had a fever one day but the Dr's. decided that was caused from her teething.
Ilyanna also has a rash on her legs that looks as if she is sunburned.They could not decided if it was caused from the chemo or the sheets. They had a Dermatologist come in and he prescribed some cream for her legs.
Since Ily has all those sores in her mouth and down her throat she has not been eating much so her Mom had talked with the Dr's and they decided it would be best to put in a feeding tube before she comes home. Well, as soon as the nurse got the feeding tube in and turned her back Ilyanna pulled it right out.She still has her marvelous disposition. They just put it back in and taped it down a bit better this time.She is still getting sick but she is keeping more in than is coming out.
All her medical supplies have arrived..we will all be wearing face masks to visit and scrubbing our hands in antiseptic gel but its well worth it for the smiles that Ilyanna gives us all.
WELCOME HOME ILYANNA
Ilyanna also has a rash on her legs that looks as if she is sunburned.They could not decided if it was caused from the chemo or the sheets. They had a Dermatologist come in and he prescribed some cream for her legs.
Since Ily has all those sores in her mouth and down her throat she has not been eating much so her Mom had talked with the Dr's and they decided it would be best to put in a feeding tube before she comes home. Well, as soon as the nurse got the feeding tube in and turned her back Ilyanna pulled it right out.She still has her marvelous disposition. They just put it back in and taped it down a bit better this time.She is still getting sick but she is keeping more in than is coming out.
All her medical supplies have arrived..we will all be wearing face masks to visit and scrubbing our hands in antiseptic gel but its well worth it for the smiles that Ilyanna gives us all.
WELCOME HOME ILYANNA
Almost Done With First Session
Beautiful day out today and word is that Ilyanna is coming to the end of the first round of treatment. It has been almost a week and Ily is down to 2 more doses of treatment. One this evening and one tomorrow. HURRAY ILYANNA!!
She had not been eating these past few days but today she ate 5 ounces. So that was terrific on her part. Mom, Dad, and Ilyanna may take a walk down to the garden just to get out of the room for a bit.
They are planning on giving her a blood transfusion before she comes home to build up her blood count which is the most difficult part because it takes several days for the chemo to effect the body.
Ilyanna is doing so well they hope to be able to go home by Wednesday or Thursday.Once they get through this round their are just 2 more rounds to go.
Christina and Thiago want to Thank all of you for your prayers, they are so very much appreciated.
She had not been eating these past few days but today she ate 5 ounces. So that was terrific on her part. Mom, Dad, and Ilyanna may take a walk down to the garden just to get out of the room for a bit.
They are planning on giving her a blood transfusion before she comes home to build up her blood count which is the most difficult part because it takes several days for the chemo to effect the body.
Ilyanna is doing so well they hope to be able to go home by Wednesday or Thursday.Once they get through this round their are just 2 more rounds to go.
Christina and Thiago want to Thank all of you for your prayers, they are so very much appreciated.
April 22....First Chemo Session
Well, Ilyanna entered the hospital yesterday to get ready for her first chemotherapy session.She entered the hospital all smiles as usual. The first thing they did was give her the Benadryl for the nauseousness. It wasn't until about 3 am that they started the Methotrexate,a trial drug that the family has opted to try for chemotherapy.Ilyanna was awake every few hours during the night. Early in the morning she seemed to get the shakes which is caused by the medicine and had one episode of vomiting. As of now she is sleeping and resting comfortably. That's all we can hope for at the moment is that she will be comfortable. They will continue to check Ily's urine and when it shows that the Methotrexate is almost out of her system then they will give her another dose of chemo.
Ilyanna will be in the hospital for the next 8 to 10 days but I will update this blog as her days go along.
Now Christina and Thiago our prayers are going out to the two of you but you both need to try and rest. When Ily is resting make sure you both eat properly. You have a long haul ahead of you both and love and prayers are going to get you part of the way but rest and food are going to get you some of the way also.
Ilyanna will be in the hospital for the next 8 to 10 days but I will update this blog as her days go along.
Now Christina and Thiago our prayers are going out to the two of you but you both need to try and rest. When Ily is resting make sure you both eat properly. You have a long haul ahead of you both and love and prayers are going to get you part of the way but rest and food are going to get you some of the way also.
April 13, 2009
We sat down with Ilyanna's Oncologist's this evening and had a long talk about what decision they had come to and what plans they had decided on to treat her. She had decided that they were pretty sure Ilyanna had Medullablastoma but are running a few more tests just to make sure. The ATRT has a certain chromosone it it which is missing. So to be on the positive side they have sent the biopsy out to John Hopkin's Institute.
This is good news as with having Medullablastoma this gives Ilyanna a survival rate of 35-40% which ATRT is only a 10% chance. The Doctor explained in full detail the treatments and just what it will entail for Ilyanna's chemotherapy.The Doctor gave us a couple of options about her treatment and medicine for which we are going to have to think long and hard about...because after all we want to do what is best for our daughter.
For the most part she will undergo 3 cycles of chemotherapy..once every 4 weeks.Then after each cycle they will do an MRI to see if the tumor has shrunk or if it is gone. If it is not gone they will do another cycle of chemotherapy. If it is gone and everything is fine then they will go ahead and do 3 doses of stem cell transplant.
This is good news as with having Medullablastoma this gives Ilyanna a survival rate of 35-40% which ATRT is only a 10% chance. The Doctor explained in full detail the treatments and just what it will entail for Ilyanna's chemotherapy.The Doctor gave us a couple of options about her treatment and medicine for which we are going to have to think long and hard about...because after all we want to do what is best for our daughter.
For the most part she will undergo 3 cycles of chemotherapy..once every 4 weeks.Then after each cycle they will do an MRI to see if the tumor has shrunk or if it is gone. If it is not gone they will do another cycle of chemotherapy. If it is gone and everything is fine then they will go ahead and do 3 doses of stem cell transplant.
April 14, 2009
Off to the hospital early to have some blood work and have the surgery so that the portcath can be put it. They also are taking some spinyl fluid and some bone marrow. Ilyanna came through with flying colors. When she woke up...she woke up with that beautiful smile of hers on.
All in all it is going to be a long hard battle for Ilyanna but as our family and the Doctors believe if anyone can do Ilyanna can.
We would like to Thank every one for their support and Prayers and please keep up the prayers as we are really going to need them as this progresses.
All in all it is going to be a long hard battle for Ilyanna but as our family and the Doctors believe if anyone can do Ilyanna can.
We would like to Thank every one for their support and Prayers and please keep up the prayers as we are really going to need them as this progresses.
April 10, 2009
On April 13th, Christina, Thiago, and Christina's parents will go in and meet with the Drs. And discuss the treatment plan for our beautiful Ilyanna. She is a strong baby. I know she will be just fine.
On April 14th, Ilyanna will be going into Children to have the port-a-cath put in. She most likely will be admitted for the night and her Mom and Dad will be taught how to use it.
On April 14th, Ilyanna will be going into Children to have the port-a-cath put in. She most likely will be admitted for the night and her Mom and Dad will be taught how to use it.
April 9, 2009
After waiting patiently, well maybe not patiently, they were able to narrow the results down to 2 cancers. Ilyanna was diagnosed with either Medullablastoma or Atypical Teratoid Rhabdoid Tumor (ATRT) both very serious cancers. Cancers that would need intense chemotherapy. They have other specialists looking at the biopsy to try and narrow this down even further. These 2 cancers are so similar that this is why they have come up with these results.
March 30, 2009
Ilyanna went in for a 5 hour surgery. They could not remove the whole tumor. They were able to get just enough to do the biopsy. Ilyanna came through the surgery wonderfully. She was smiling 2 days later. She recovered very well and Christina and Thiago were able to bring her home on April 3 to wait for the biopsy results.
March 27, 2009
Ilyanna went for her cat scan. The cat scan showed that Ilyanna had a mass in the cerebellum region of her brain and they wanted to do a MRI right away to find out what it was. The MRI showed that Ilyanna had a brain tumor and a few dots in her spine which gave them the conclusion that it was cancer and that it had already begun to spread.
The Doctor's felt it was of an urgent need that Ilyanna have surgery right away so she was admitted to the hospital that day. They needed to remove a piece of the tumor for a biopsy to distinguish what type of cancer it was.
The Doctor's felt it was of an urgent need that Ilyanna have surgery right away so she was admitted to the hospital that day. They needed to remove a piece of the tumor for a biopsy to distinguish what type of cancer it was.
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