Well, I am amazed at Alyona's strength. We could all learn from her. Today she got a stuffed dog as a gift from her teacher Mrs. Woods. As we were getting ready to leave for the hospital she says, "Mom, I thought of a name for my dog." I said, "What?" Aly says, "Hope."
The more we all think about and hear about what her body has not been doing lately, we don't know how she has been able to function the way she has. The tests they've taken in the past days show her glucose (blood sugar) being very low and her sodium levels being very high. They said her thyroid hasn't been functioning properly and her hormone levels are off. Not to mention the vision loss.
Aly made it through her surgeries just fine today. All went well. She brought her favorite monkey with her. It is a little one (same size as a beanie baby). Its name is Tiny. Tiny got a hospital bracelet just like Aly. They gave Aly some baby booties that were way too big for Tiny, so they suggested to make a hat out of one, so Tiny has blue bootie hat. They also gave Tiny a little oxygen mask like Aly had to breathe into for the anesthetic that put her to sleep before the surgery. Aly thought that was all great!
The semi-permanent central IV is in place up near her right collar bone. The stomach tube is in and that is the one thing she is upset about. The tube will be sticking out for about a month and a half. At that point they will put a "port" on it so it will be flush against her stomach. She was happy to hear that once that is on she will be able to swim! We do not have the results of the spinal tap they did yet. They started the chemotherapy treatment around 6pm. She will have another dose tomorrow afternoon and then the third on Saturday morning. They told us if all goes well, she can come home on Saturday evening.
Thursday, March 31, 2011
Wednesday, March 30, 2011
3/30/2011
I am so happy that Aly is feeling so much better today. She has been wanting to get her hair cut shorter, even before all this came about, and now more so, so I took her to have her hair done. She really enjoyed that and it looks really cute. She is over at a friend's house, right now, playing. I asked if she wanted to go and see her classmates in the morning, before we have to be at the hospital and she gave me a definite yes. So I think that will be good.
One of the effects of this tumor, that she's been dealing with, is it causes a diabetes effect, yet doesn't show up on tests for diabetes, because believe me I had asked about that! I can't remember what they call it, something like diabetes insipidus. It doesn't let the kidneys hold onto liquids the way it should so, not only was she visiting the bathroom all the time, she was always drinking like she could never get enough. We discovered that she was getting up around 3 times a night to drink and use the toilet. They started her on a medicine yesterday, that controls this and Aly was so happy to report that she slept great and didn't have to use the bathroom at all last night or much today! She did have to get up for a nose bleed though. It has just been quite amazing to put all the pieces together, finally. On Friday, the nurse kept asking, "Has Aly had this_____?, does Aly do this______?", and it was a "yes" to most all of the questions.
Tonight will consist of packing/planning for her hospital stay. She has been asking a lot of questions, but remains positive and upbeat. I talked with her today about all the people who care about her and are praying for her. It has really been the first day she has been feeling good enough to have some conversations about it all. I took time to show her some emails that were directed to her and I think she was really happy about it. She is a smart little cookie and is understanding more than I think we all realize.
Thank you neighbors for the hospital care package and the recorder was a fabulous idea. We may even have Aly use it to record questions that she comes up with. Thank you, EVERYONE, for your support as we start this journey. We are so blessed to have people offering so much help and it is amazing to see a community come together to support Aly.
Many of you have offered meals, and we will gladly accept. Our neighbor Holly has offered to help coordinate this for us so, if you are interested in helping in that way please email her at hollygraziano@embarqmail.com. We may not need them right now, but possibly in the weeks/months to come.
One of the effects of this tumor, that she's been dealing with, is it causes a diabetes effect, yet doesn't show up on tests for diabetes, because believe me I had asked about that! I can't remember what they call it, something like diabetes insipidus. It doesn't let the kidneys hold onto liquids the way it should so, not only was she visiting the bathroom all the time, she was always drinking like she could never get enough. We discovered that she was getting up around 3 times a night to drink and use the toilet. They started her on a medicine yesterday, that controls this and Aly was so happy to report that she slept great and didn't have to use the bathroom at all last night or much today! She did have to get up for a nose bleed though. It has just been quite amazing to put all the pieces together, finally. On Friday, the nurse kept asking, "Has Aly had this_____?, does Aly do this______?", and it was a "yes" to most all of the questions.
Tonight will consist of packing/planning for her hospital stay. She has been asking a lot of questions, but remains positive and upbeat. I talked with her today about all the people who care about her and are praying for her. It has really been the first day she has been feeling good enough to have some conversations about it all. I took time to show her some emails that were directed to her and I think she was really happy about it. She is a smart little cookie and is understanding more than I think we all realize.
Thank you neighbors for the hospital care package and the recorder was a fabulous idea. We may even have Aly use it to record questions that she comes up with. Thank you, EVERYONE, for your support as we start this journey. We are so blessed to have people offering so much help and it is amazing to see a community come together to support Aly.
Many of you have offered meals, and we will gladly accept. Our neighbor Holly has offered to help coordinate this for us so, if you are interested in helping in that way please email her at hollygraziano@embarqmail.com. We may not need them right now, but possibly in the weeks/months to come.
Tuesday, March 29, 2011
Tuesday 3/29
Well, we learned something interesting today. Everyone of us is born with what they call these germ cells. As you grow, they are supposed to migrate down through your body. For women, they end up in your ovaries. For men, they go to the testicles. As they explained to us, sometimes these cells "get caught up" and don't migrate the way they are supposed to and they create this tumor. The tumor usually shows itself during puberty or teenage years.
We also were told that Aly will be admitted to the hospital on Thursday. They will be doing the spinal tap and placing a feeding tube and a chest IV tube. These tubes will remain in until the treatment is complete. They will also start the chemo treatments this weekend. The treatment will consist of 6 doses of chemotherapy which will be spread out every 3 weeks. This means that Aly will spend 3-5 days in the hospital every 3 weeks. Once that is complete she will go through 4 weeks of radiation treatments.
We appreciate all the wonderful words of support and prayers. Many of you have asked what you can do for us. We were told it will be hard to figure out what we'll need until we start walking down this path. Much of it will depend on how Aly reacts to the treatments and how sick she is.
Driving down to Minneapolis at all odd times and trying to fit in meals wherever we can will be the biggest challenge. Figuring out schedules and what we will need to do to care for Aly will be the next challenge. It will also be difficult to keep some normalcy for Tom and all the activities he has coming up.
Aly has been hit hard by the truth today, that she does have cancer and she will at some point lose her hair. What makes it worse is that she has been sick with a fever, sore throat and headache on top of it all. I wanted her to get back to school for a couple days but it doesn't look like that is going to happen.
We will do our best to reply to all of your individual emails. Just know that we appreciate them and we know you will understand if we don't respond right away.
We also were told that Aly will be admitted to the hospital on Thursday. They will be doing the spinal tap and placing a feeding tube and a chest IV tube. These tubes will remain in until the treatment is complete. They will also start the chemo treatments this weekend. The treatment will consist of 6 doses of chemotherapy which will be spread out every 3 weeks. This means that Aly will spend 3-5 days in the hospital every 3 weeks. Once that is complete she will go through 4 weeks of radiation treatments.
We appreciate all the wonderful words of support and prayers. Many of you have asked what you can do for us. We were told it will be hard to figure out what we'll need until we start walking down this path. Much of it will depend on how Aly reacts to the treatments and how sick she is.
Driving down to Minneapolis at all odd times and trying to fit in meals wherever we can will be the biggest challenge. Figuring out schedules and what we will need to do to care for Aly will be the next challenge. It will also be difficult to keep some normalcy for Tom and all the activities he has coming up.
Aly has been hit hard by the truth today, that she does have cancer and she will at some point lose her hair. What makes it worse is that she has been sick with a fever, sore throat and headache on top of it all. I wanted her to get back to school for a couple days but it doesn't look like that is going to happen.
We will do our best to reply to all of your individual emails. Just know that we appreciate them and we know you will understand if we don't respond right away.
Monday, March 28, 2011
Cancer has entered our vocabulary...
Just when we were beginning to feel like there may be a light at the end of the tunnel, we found out today that Alyona's tumor is a malignant one. Results of blood tests run on Friday came back today. They tell us it is definitely cancer.
It is called a mixed germ cell tumor. One of the most rare. Because of the delicate location of the tumor, by the eye nerves, endocrine glands and pituitary glands they do not want to operate. They are turning to chemotherapy and radiation. Eight to 10 months for a young girl to endure. To begin with, they will need to do a spinal tap to make sure it hasn't spread as this is known to spread to the spine. Then they will be putting in feeding tubes because they don't feel Aly will be able to maintain her weight as she has already had issues prior to this complete diagnosis. Then the treatment will begin.
What lies ahead is unknown. I'm scared for this sweet little girl. It is not fair for someone who has already been through so much in her young life to be expected to endure this.
It is called a mixed germ cell tumor. One of the most rare. Because of the delicate location of the tumor, by the eye nerves, endocrine glands and pituitary glands they do not want to operate. They are turning to chemotherapy and radiation. Eight to 10 months for a young girl to endure. To begin with, they will need to do a spinal tap to make sure it hasn't spread as this is known to spread to the spine. Then they will be putting in feeding tubes because they don't feel Aly will be able to maintain her weight as she has already had issues prior to this complete diagnosis. Then the treatment will begin.
What lies ahead is unknown. I'm scared for this sweet little girl. It is not fair for someone who has already been through so much in her young life to be expected to endure this.
Sunday, March 27, 2011
A Brief History.... Aly's Diagnosis
Hi All,
Thank you all for your concern. For those of you who don't know yet I will give a brief history and then tell what went on today (Friday, March 25th)...
Aly started wearing glasses last April and by last November needed a new prescription. As it was time for her yearly exam now, I took her in last Thursday for an eye exam. When we got to the part where they cover one eye and check vision in the other eye, Aly could not see anything out of her right eye. Because her vision declined so rapidly they sent us to an eye specialist. Her appointment was yesterday afternoon. That specialist came to the conclusion that it had to have something to do with the nerves that cross at the back of the eye because she actually had problems seeing out of both eyes, yet both eyeballs themselves looked very healthy and there was nothing affecting vision there. The specialist sent us for an MRI, which happened this morning. Before Aly was even out of the MRI, I was told our specialist was on the phone and wanted to talk with me. He proceeded to tell me that the found a tumor right where he thought there was a problem. The tumor is putting pressure on her eye nerves causing the vision loss.
At this point, they do not believe it is cancerous, because of the way it looked on the images. But it will require surgery. From the MRI we were directed to go to Children's Hospital today for more testing and to talk about what will happen next. We met a great group of people who will take care of Aly. On Tuesday we have an appointment to talk to the neurological surgeon and schedule a time for the surgery. They expect that Aly will be in the hospital for 3-7 days and then will have to stay home for approximately 2 weeks.
On a positive note, if anything can be positive right now, this tumor may be the cause of other issues she has been dealing with and once it is removed she may even regain her sight.
We left the house at 9:45 this morning and are now just returning home (after some dinner). It has been a long exhausting day. We so appreciate your concern, prayers and support.
Thank you all for your concern. For those of you who don't know yet I will give a brief history and then tell what went on today (Friday, March 25th)...
Aly started wearing glasses last April and by last November needed a new prescription. As it was time for her yearly exam now, I took her in last Thursday for an eye exam. When we got to the part where they cover one eye and check vision in the other eye, Aly could not see anything out of her right eye. Because her vision declined so rapidly they sent us to an eye specialist. Her appointment was yesterday afternoon. That specialist came to the conclusion that it had to have something to do with the nerves that cross at the back of the eye because she actually had problems seeing out of both eyes, yet both eyeballs themselves looked very healthy and there was nothing affecting vision there. The specialist sent us for an MRI, which happened this morning. Before Aly was even out of the MRI, I was told our specialist was on the phone and wanted to talk with me. He proceeded to tell me that the found a tumor right where he thought there was a problem. The tumor is putting pressure on her eye nerves causing the vision loss.
At this point, they do not believe it is cancerous, because of the way it looked on the images. But it will require surgery. From the MRI we were directed to go to Children's Hospital today for more testing and to talk about what will happen next. We met a great group of people who will take care of Aly. On Tuesday we have an appointment to talk to the neurological surgeon and schedule a time for the surgery. They expect that Aly will be in the hospital for 3-7 days and then will have to stay home for approximately 2 weeks.
On a positive note, if anything can be positive right now, this tumor may be the cause of other issues she has been dealing with and once it is removed she may even regain her sight.
We left the house at 9:45 this morning and are now just returning home (after some dinner). It has been a long exhausting day. We so appreciate your concern, prayers and support.
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