kid with swollen lymph nodes

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. Its Sebastion. I am updating because Megan's whole family is here. Her dad came as a surprise, Jeff got in early, and her mom is here. Megan is home. The oncologist said to come back over the weekend but for now she is ok.
We went bowling today and then saw Norbit(an Eddie Murphy movie). Which was a not funny movie according to Megan. She wouldn't recommand it. Big news of the day is Meg managed to lose her purse. She does this all the time but this time instead of just having to cancel a bunch of credit cards she needed a new inhaler. Oncologist started to think she was better off in the hospital after learning she was walking around without it.
She is starting to act a little sillier(almost back to her usual self). Her dad told Jeff they needed to talk about those grades of his and she offered to pound him. It was a joke. They don't fight cause she only sees him for a month each year. Also, when going to church for Ash Wednesday she said that she was 1/4 Jewish. Which actually is true.
About the blanket/toe socks. She definatly knows about toe socks. Megan petitioned the principal to let everyone at school walk around in them instead of shoes. She then bought everyone toe socks. I would say she would love a blanket except I don't know how she could get it. Don't know if you have any ideas.
I am sure Megan will update you tonight. She says her house is very crowded with her whole family home.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hello! Its me Megan.
I got all the emails. Thanks.
Yeah, my family is home. It is kind of weird. I just realized that it is nice to have the house all to myself. Quieter at least. My brother's(Jeff) grades went down- a lot second quarter. He is in TROUBLE. You are right he is a brave kid. I can't imagine being alone at boarding school when I was only seven years old and then coming home just to have an operation to save a strangers life. He flew home comercial for the first time in his life alone. He said"There were lots of people some didn't speak my laungauge, maybe we should buy them another plane so it is not crowded next time." I think he is pretty funny for a little kid.

I got a new bed today. It has drawers under it. I need more space in my room because I want to get a couch in it. I will email a picture of the bed and rest of my SMALL room. Sebastion helped move my clothes from my old dresser to my new bad. According to him a have enough clothes for a whole country. Boys are crazy about that stuff though.

Thanks for the offer of a blanket. I have been getting lots of things people made. Got a pillow with a picture of one of my puppies on it and a quilt.

Start chemo in my back on the weekend. I HATE lumbar punctures SOOO much. I googled high dose methotraxate. It is toxic to most people and should only be used as a last resort. I guess what doesn't kill you makes you stronger. It is still scary though the side effects of it. Stroke is considered to be a common side effect and death is rare but does occur enough to be listed.

Boldelly · Posted: Wed Feb 21, 2007 9:41 pm Post subject: Re: kid with swollen lymph nodes

I am glad you are home. It is always good when you come home from that hospital. I am glad your family is around and Randi knows about having a lot of people around. It is good and they care but it sometimes gets to be a bit much for her. Sometimes she just wants to be left alone. One night she was crying in her room and I went in and asked what was wrong and she as always says "nothing", but I asked "just everything and the whole situation" and she said "yes" I asked her if she wanted me to stay with her and she said "no, just let me cry". Sometimes family can be a bit daunting (not in a mean way) I am not sure how to say what I am trying to say, ya know?

My brother is 37 and he just flew to California and back to Texas and that was the longest flight he had ever been on, lol. He was so nervous, but he said it was not so bad.

Well that is good that you got a new bed so you can put a couch in your room it will help I am sure when people come to visit you. Pleas do send me a picture of it. Yes, boy's will never understand that a girl could never have enough clothes, lol. Randi Renay loves to shop when she can. She has had a really good day today, I would say one of the best in a very, very, very long time. Feels good to see her laugh, be silly, and pick on me. Just hope it lasts for a while.

I know having your dad come home was a good surprise. I am glad for you.
I am sorry you have to start that hard chemo, but they say try to sleep through it but I am sure that is not going to be possible with a lumbar puncture. That I am not so familiar with cuz Randi never had to have that done. I know the procedure is like a spinal tap and Randi had one of those when she was a baby and I have had epidurals when I had my kids so I guess it would be similar to that, right? Well try to think good thoughts and have faith. We are praying for you.

That is okay about the blanket. Just a thought and we want to help. I am sure you have gotten all kinds of stuff cuz Randi has gotten so much there is not enough room for everything in her room. We are going to see about some shelves tomorrow for some of it.

Meg does your parents know you are talking to me and Randi? I would not want them at all to get the wrong idea of me and you and Randi talking and e-mailing you. When I first read your post my heart just went out to you because it was kinda the same with Randi. If they ever want to post or e-mail me please tell them too. I am sure your mother knows a whole lot of what is going on. When my Randi's Poppy (grandfather) died her Nanny (grandmother) is an RN and we brought him home and she took total care of him. So I don't mean for information on your disease but just to see that Randi and I do care about you and want to know how you are doing. Anything we offer is not out of mallice or weird stuff, it is just because we want to help.

Well honey take care and let me know how you are and what is going on. Tell Sebastion hello and keep me informed. Randi also says hi and she is really happy about the donor deal.

Write soon and know we are thinking about you. Be strong and fight honey.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi.
I understand the wanting to be alone thing. It is sometimes easier I think not to have to explain to people who don't have cancer why it is so hard to lose your hair.
The long flights. I fly to LA a lot so that is 6 hours. I have been on 27 hour flights. I still get nervous when there is turbulence on the plane.
We were going to a benifit thing and Sebastion did not get why he couldn't wear the same tie he wore to the last one. He actually asked me "Do you get a new dress for every single one of these events"
My mom knows I am talking to someone online. She is a doctor so I can go to her for medical advice. (I guess, she is a brain surgeon not an oncologist)
A lumbar puncture is the same thing as a spinal tap. I just learned that. Different names for a scary thing.
This is a dumb question but what does mallice mean?
I have a funny list I will email tommarrow.

Boldelly · Posted: Wed Feb 21, 2007 10:47 pm Post subject: Re: kid with swollen lymph nodes

I guess I used the wrong word to try to express what I was saying and even spelled it wrong malice to mean - implies a feeling of antipathy of limited duration <ill will provoked by a careless remark>. I guess what I am saying is that these days there are so many crazy people on the internet and you read about so much craziness of others harming others or trying to take advantage of someone or you hear about kids talking to grown adults and other kids and things tend to go wrong.

That is not our or my intent at all. I enjoy talking to you and offering any support that I can give. The blanket idea was no plot to find you and do some harm to you, it was because I know it brought comfort to Randi.

Do you understand what I am saying or am I making it worse? Not always good with words.

Write soon and I will write back and if you have any questions let me know or if I have any questions I will let you know. We are kind of learning from each other.

Take care and talk to you soon.

Laurie

Boldelly · Posted: Wed Feb 21, 2007 10:47 pm Post subject: Re: kid with swollen lymph nodes

I guess I used the wrong word to try to express what I was saying and even spelled it wrong malice to mean - implies a feeling of antipathy of limited duration <ill will provoked by a careless remark>. I guess what I am saying is that these days there are so many crazy people on the internet and you read about so much craziness of others harming others or trying to take advantage of someone or you hear about kids talking to grown adults and other kids and things tend to go wrong.

That is not our or my intent at all. I enjoy talking to you and offering any support that I can give. The blanket idea was no plot to find you and do some harm to you, it was because I know it brought comfort to Randi.

Do you understand what I am saying or am I making it worse? Not always good with words.

Write soon and I will write back and if you have any questions let me know or if I have any questions I will let you know. We are kind of learning from each other.

Take care and talk to you soon.

Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hey!!
I saw the pyciatrist a few days ago. It was not fun. He was nice but asked too many questions.
I know their are crazy people online but you aren't one of them. I am not allowed to have a myspace for that reason.
I gave my mom your email. I hope you don't mind but I thought she might have a couple questions for you.
I should probably tell you the truth about the blanket. I can't get anything in the mail really. Everything needs to be screened because my mom works high up in the government. To even get past the bridge to my house you have to go through a security gate. It gets annoying sometimes to have all this security but I guess it is to keep me safe. All my email is also filtered through my manager to make sure there are not any threats or anything.
Do you live in a small town? I do but it is close to the city and we have beaches and the mall so it is not too bad.
I am going ice skating today. Sebastion has planned a lot of activities to keep me busy. I will just be glad to get out of the house. It feels very small for a 26 room house with my dad screaming at Jeff every 5 minutes. He is going back to London today so it will be quieter soon.
Thanks, and I am glad Randi had a good day and I hope she keeps having them.

Boldelly · Posted: Thu Feb 22, 2007 10:46 am Post subject: Re: kid with swollen lymph nodes

Good morning,

Of course I do not mind you giving your mom my e-mail. It is okay about the blanket as well.

I know what you mean about the psychiatrist, when I left the room Randi flat out told him she did not want to talk, so he said how about I ask questions and you answer. I asked him when he came and got me from the waiting room if she answered him and he said yes. So I guess that is a start. She has to go back next week to see him again, which she is not thrilled about but I think it may help her cuz she is the kind that holds her feelings in until she just explodes with crying and being angry, as if she would just talk to me or someone it would not get that bad. She has gotten better about talking to me about things since this happened, but then agian I am around her all the time.

I understand about young people talking on the internet to other people because I have Randi and she is pretty good about not doing that, but she had a friend that I had to stop from coming over because she would do that and one night I caught her on the phone with some boy from Florida that she did not even know and at that time they were only about 14. Her parents are very very strict on her so anytime she gets away from them she goes wild. I told Randi no more hanging with her because she is going to either get into trouble or get hurt. That is why I wanted you and your parents to know I and my daughter are not that type of people.

Yes our town is small and we too have a mall and movie theater in the mall, a Wal-Mart and lots of fast food resturants. Galveston is only about 20 minutes away so we have the beach there and there is a Schliterbon water Park (I know that is not spelled right but I think you get the just of it). Also we have the longes man mad dike, which is just a road that goes about five miles into the bay, but people goe fishing, windboard sailing and there is a small beach on it too.

Houston is a big city of us and it takes about 30-45 minutes to just get into the city like when I took my brother to the airport downtown Houston it took us about an hour and 10 minutes to get there. There are all kinds of things to do there, but we don't go much. My son has to go to his cardiologist there at Texas Children's Hospital for check ups and things like that, but I hate to drive in Houston, they drive fast and crazy. he he, but no lie! I took Randi up there once for a cardiac follow up and she was telling me calm down mom or you are going to have a heart attack before we get there, she was laughing telling me to "breath". That is how much I hate to go there. But a little closer there is an ice skating rink and at the Gallaria (another mall on the north side of Houston) there is another ice skating rink. I have never been ice skating. Roller skating I can do. You can even rent skates on the beach in Galveston and skate down the seawall in the summer. Galveston is a big tourist attraction. It is a historical place, pretty though.

That is good that Sabastion is keeping you busy it helps to keep your mind occupied. Be careful and don't over do it though (like I always tell Randi and she tells me "I know mom!!) , but have fun.

Yes I hope she keep having some good days cuz they say when radiation starts she will become tired again and maybe nausous and her platlett counts will probably flucutate.

Well I will let you get your day started. Let me know how you are, sounds like you are doing pretty good for now. Have really fun day while you are out of th hospital. Tell Sabastion hello and to take care of you!!
Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. I went ice skating today. It was fun. Everyone tells me not to over do it.
The doctor gave me this beeper nerve stimulater thing for my foot. I don't know if it would help Randi with her hands though. It makes my foot less numb so I don't need the crutches.
My mom hates driving on the highway. I have a heart murmur so I have to go to the cardiologist every 6 months for an echo. My mom does not like the drive on the highway to the Westchester Medical Center. My dad always has to come if he is home because my mom also worries she might forget something he says. (They worry a lot because it is not the innocent kind of heart murmer, I have to take antibiotics at the dentist so I don't get a heart infection)
I have my own beach and then we have the local beach. The nearest mall is in White Plains about a half hour drive.
My platlets get low to. They can give you transfusions if they get too low. I hope she has more good days.
One more day of freedom until I start chemo.

Boldelly · Posted: Fri Feb 23, 2007 5:50 am Post subject: Re: kid with swollen lymph nodes

Well I am glad you are feeling well enough to go skating and had a good time to day and try, if you dont feel too bad, to do that on your off days of chemo. I am sorry that you have to go bakc into the hospital. Randi after about the 2nd treatment she just hates it with a passion, even just going to see the oncologist (Dr. Huang). We just got back home from the er because my neice is having twins and she came over today and Randi and her were playing around and Randi fell on the lower part of her back and it really hurt her, I got scared because she could not get up off of the floor for little bit and did not want me to help. She finially got up and said that it hurt in her legs, back, sides, and it hurt when she breathed. So we decided it might just be a good idea to check it out. We went to the hospitl down the road from us, not to the one who treats her cance, so they could check her out and x-ray her well thank God nothing was hurt except she is going to be pretty sore tomorrow, but I hope not. They gave her Tylenol 3, 300 mg and Flexiril (muscle relaxer). Both of my kids are kind of clumsy, which they take after their mother, ha ha.

Is the thing on your foot called a tenz (sp?) where it sends small electrical impulses into the muscle? We are to see our oncolgist on the 6th of March, but we go to see the Radiation Oncology on the 28th of this month. I could maybe ask and see what they say, can't hurt, huh?

My son (Ian) somehow got his heart damaged along the way of life and now the left side of his heart does not pump out as much as a normal heart and on the right side there are electrical imputses that go through your heart to help it beat and on his right side the do not go through the heart they go around it which is called a right bundle branch block. He has the EKG of a 50 year old man and his is 19 and has had it since he was 15. So he has to take medication for the rest of his life or he will have congestive heart failure. So I hate taking him into houston. But now this July will be the first time he could wait a year to go. All the times before it was every 6 months too.

During Randi's chemo they would not let her brush her teeth like usual because he did not ant bacteria to get into her system if she make her gums bleed and get an infection in her port. This was not easy because she has braces. But on Monday we finally get to go have them cleaned and she has to take antibiotics too before the dentist. Ian has to take 2 before he goes and then 4 more 6 hours after he has taken the 2 (kinda confusing but do you understand what I am TRYING to say, lol).

Well I am glad today was a good day for you and you had fun. It was a beautiful day here today almost 80 degrees without the humidity.

Well I guess I am going to try to go to bed now and toss and turn till I fall asleep.

Sweet dreams

Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. I will keep this short because I am tired. I am on lots of morphine cause the tumor in my chest got bigger. I have to go to the hospital soon for more blood transfusions before chemo tomarrow.
You are lucky it is 80 degrees. We got more snow last night and it is very very windy. If you want I can get Sebastion or someone to keep updating you while I am in the hospital. I hope Randi keeps having good days and you get some sleep.

Boldelly · Posted: Fri Feb 23, 2007 2:22 pm Post subject: Re: kid with swollen lymph nodes

Well I am sorry to hear they have gotten bigger. But just keep doing your chemo and we will keep praying and it will be better soon. Please do ask Sabastion or someone to keep me informed.

We are thinking of you.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. Its Sebastion.
Megan is doing really well. She was sedated until this morning and will have more chemo tonight. There isn't much more to report except that I know she really liked the emails you sent her before. I'll keep telling you what happens when there is more news.

Boldelly · Posted: Sun Feb 25, 2007 12:46 am Post subject: Re: kid with swollen lymph nodes

Thanks sweetie for the update and it does not need to be long just how things are going for her. I think of her everyday and especiall on the weekends because I know that is when she gets hers. Randi went in on Monday and came home late Tuesday *(after that chemo) and went back outpaient on Wensday.

Something I am sooo very grateful for is that they sedate her during her chemo. It keeps them from being soooo very sick and especially the type they are giving her. The did not do that until they put her on the valium at about the middle of the 3rd round. Fourth round she was pretty sleepy but still anxious. Does the hospital and the thought of the hospital bother Meg at all or does she just not say?

Well thanks again for the update and just be there for her and honey I know it is hard on you and you and her are very brave and couragous people. You both will do great things with your lives. I will try to find some more emails and jokes. Tell her I will get her a picture of me, we just got out other computer with all our pictures and stuff fixed so now have to work on getting it hooked to the internet.

Take care of yourself and let her know that you, her family, and she is in our thoughts and prayer.

Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi, I'm Anna, Megan's best friend.
She is doing pretty well. Her oncologist had her moved to the pediatric observation unit though. That's not very good because it is just another name for the ICU. She has a lot of pressure in her brain from the tumors so she may have a shunt put in. It would have been done before except there is an extremely high risk of infection in the brain. And she already has meningitis even though it is getting better.
Sebastion has been at the hospital since Friday. They have a family room with showers and beds at the hospital. He has been great through all this. Or as Megan says "so totally awesome." Those are her favorite words. I didn't want her to date him at first. She didn't even like him his first day at school. They got into a fight in Latin about who had been to the most countries in the Europeon Union. They had both been to them all. Sebastion had moved here from Germany 3 weeks before and all the girls in the school liked him. Megan was not impressed she had just broken up with another boy. Her idea not his and she was sick of boys. Then they were in the lunch line together and she was to exhusted to find money for lunch(jet lag from a 10 hour flight the day before). He bought her lunch and asked her out. They have been dating ever since then.

Megan hates the hospital. She actually started crying about having to go back on Friday. It is the first time in all the time I have known her(since she was 6 years old) that she hasn't acted like she was at least 20 years old. I have never seen her not perfectly composed before. She has always acted a lot older then she is(not like about boys, she is just very mature and always knows what to say) for once she acted her age and let herself cry. Personally I think it was a good thing that she let her feelings out. I don't think she is uncomfortable in the hospital. After, being in her first movie she would go to childrens hospitals and sign autographs. She actually just did a radiothon for Westchester Medical Centers childrens hospital. Her dream is to be a brain surgeon like her mom when she is older.

Megan's brother had his stem cells extracted Saturday. They have to do some tests with them before they take a full supply and destroy Megan's immune system.
I don't know if you could give me any more details about Randi and her treatment. I feel like I know so little about what is going on with Megan. Sorry this is so long and Thanks.

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