kid with swollen lymph nodes

Boldelly · Posted: Thu Feb 15, 2007 7:19 pm Post subject: Thanks for the info

Send me the stuff for the homework thing and I think I can do the $200 if it helps her keep up. She does not want to fail 10th grade. She wants to be with her class next year when she goes back to school. Thanks you are so resourceful Smile

So you were finally able to get your port? That is good it make things a lot easier. Do they give you Emla cream to put on it before you go in to have it accessed? If not ask it numbs the area and it does not hurt when they access. Randi has a double port but they say that is not common. Is yours a double or single?

Honey you have the body so wear your bikini and have a great time. Everyone will understand about the stitches. Did they give you these celephane covers that stick to your skin to put over your stitches when you bathe or shower? If so use those. If not ask the nurses about it.

Okay have fun!!!![/img]

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

I'M GOING SKIING!!!!!!!!!
And I get to ski. My counts were so totally awesome!!
So about the platlets. I don't know how much you know about platlets but they are the blood cells that go to a cut and clot to make it stop bleeding. Normal is around 150,000. Under 30,000 you can start bleeding into your brain for no reason. Mine were 27,000 when I was diagnosed. When the lymphoma cells are in your bone marrow they keep it from making enough platlets. Now my platlets are 70,000 that is good enough to go skiing. My white count is not great but I can still go and actually ski instead of just watch.
Yeah I got a port it is under my skin on my chest I wore a bikini and no one commented on the stitches. They did think I had lost a lot of weight.(I have it is kind of gross I weigh like 72 pounds down from 82 a couple weeks ago. You can see all my ribs.) It is hard to eat when you have sores in your mouth and everything tastes different. They have started "Operation Fatten Megan Up" It involves a lot of people bringing me unhealthy food during lunch.
Swimming was great. Sebastion and the rest of the boys showed off there diving skills and the girls relaxed in the hot tub and then the sauna. One tip I don't know if you have a hot tub in your house(we have indoor and outdoor pools with them attached) but it really helped with everything hurting.

http://www.nuance.com/naturallyspeaking/home/
This is a link to the software. It is $100. If you don't want to spend that much I would call the company and tell them that you have a daughter with cancer. Just an example of big companies being nice I was in Home Depot and buying plants for the homeless kids to plant in pots. I went to the customer service people to see if they would give us a discount. I didn't think they would but I was trying to get as many community service hours as possible out of this. They gave it away free to us and came up with the idea of having the kids paint the pots and found us paint that would work.

I have to go pack now. It is -16 degrees at the base of the mountain. That is cold.
Still don't have a picture. I can't find the cord to hook my digital camera to my laptop and I have no recent pictures on either of my computers. I will take pictures skiing and borrow a friends cord.

Hope tests went well. Bye Laughing

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hey. Its Sebastion. Megan has meningitis.
She started to get a headache on Sunday morning. Her friends dad who drove us to the ski place is a doctor and asked if her neck hurt. She said it was so stiff. He took her to the community hospital there and made arrangments for her the be airlifted back to NY. They did a spinal tap and ct scan to confirm. It was caught early and is under control with antibiotics.
The problem is on the ct scan of her brain there were several tumors that looked malignant. The cancer spread while on chemo. The only option now is high dose chemo in her spine and radiation to her head with a stem cell transplant. Even this will only give her a 5-10% chance.
Meg is really depressed about being back in the hospital and she wants her parents sooo badly.
We talked before this happened on Saturday night. I have been asking her every so often if she wants to talk about the cancer. She has always said no until now. She told me she can't keep doing this alone and wants her mom to come home. Her dad can't because of the families privacy. Right now they sent out a press release a couple days ago saying Megan has cancer but it is very curable and to respect her wish for privacy. Other then a short news segment there hasn't been much coverage. If her dad comes home there will be a lot of rumors about what is going on.
I don't to do for her. She has everything money can buy. It is not fair this is happening to her.

If you have any ideas on how to cheer her up it would be great. Thanks.

Boldelly · Posted: Mon Feb 19, 2007 6:20 pm Post subject: Re: kid with swollen lymph nodes

Hi Sebastion, I am truley sorry to hear about her complications. Tell her we are thinking of her and praying really hard for her. Randi never really wanted to talk about the cancer either, think it makes it more of a reality. I am not sure what to tell you to do to cheer her up but be there for her, keep things as upbeat as possible. Do little things, like take her a flower every now and again. Just let her know that lots of people love and care about her and are praying for her. I read a site that this girls parents would get her favorite performer (singer, actor, etc.) contact her by phone and wish her well and she said that that did help cheer her up. I could never find the resource to do this for Randi, but maybe with yall being a little better off than us you may know ways of doing this.

Her mom or dad being here with her would be a great help and support to her, but I am not sure that is possible for her, and I feel bad for her because she does not have that, (not meaning to be judgmental) just know from being with Randi. There are times she does not want me away from here at all. I am sure Meg is scared and maybe a lot of reassurance from doctors, parents, friends, and you may help too.

If there is anything I can do to help just let me know. I will ask my ex-sister-in-law what helped cheer Jamie(her daughter and my neice) up during her time. She was diagnosed and lived 5 years so there were a lot of ups and downs with her so I am sure she might have some ideas. Miracles do happen. I just wish I could hold her hand and tell her all will be okay.

I will write back soon and let you know what ideas I have found out.

Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Thanks.
We did have some actors come. The cast of Les Miz(girl at school stars in it) and Wicked(friends brother is producer) came to her room during chemo. She had liked both these broadway plays. Also, my friends dad is the producer of One tree hill(a teen tv show on the cb) and could have the cast call. Her next door(or next island) neighbor is Matt Dillion. She has met just about everyone there is to meet.
We did have a fun day skiing. Cancer or not she still knows her way around a double black diamond. She was getting annoyed about her foot and it was her idea to stop for lunch. Usually we have to beg her to stop for lunch.
I brought her 2 dozen roses. She said "I hate roses" but then she grinned and seemed happier.
Her mom is coming home tommarrow it is a 17 hour flight so she won't be in for a day or two.
Megan has to decide to have treatment or not. Those survival stats I said were for 6 months. The 1 year is under 1%. Knowing her she will fight to the end. And you are right miracles do happen.
If you have any ideas on what to do about mouth sores it would be apriciated. She said she doesn't care about posting here anymore but I bet she will change her mind.
Thanks again and I hope your daughters tests turned up good.

Boldelly · Posted: Mon Feb 19, 2007 10:23 pm Post subject: Re: kid with swollen lymph nodes

Well the mouth sores they just told us there was not much they could do for that but give her pain medicaion. They say it is called mucosa. Randi had them in her throat as well. Made it hard to eat and changed the way food tasted to her. Tell Meg to please not to give up. They gave my neice a 3% chance and she made it 5 years. They are always coming out with new treatments. Maybe they should consider taking her to Saint Judes. I don't know. I just hate that this has happened to her.

My daughter go a bit of good news today. The chemo got most all of the cancer except a medium size mass in her upper chest, which was where her disease was most prevalent mostly in her chest. Soooo, we are happy but still have to do the 14 weeks of radiation. I asked our oncologist what would happen if raditation did not take care of it and he said she would have to go through harder chemo. I think if that is the case we may take her to Houston, Texas to M.D. Anderson Cancer Center which is like Saint Judes. I feel guilty that Randi got some good news and Meg is having to face this terrible news. Please don't stop posting to me. I want to keep up with her. I truly care what is happening with her. Tell her not to get down to much because her attitude plays a large role in it.

My friend Tanya had AML leukemia and they were sure she would die and she is now 30 years old. So tell her try to stay strong. It is so easy for me to sit here and write this but I also know how hard it is on her from watching Randi. I am glad her mom is coming home, I really think that will help her. I just want to cry for her, but I will for sure be praying for her and I tell my friends and family about her and they say to let her know they are praying for her too.

I e-mailed my ex-sister-in-law about things to do for her and I am sure she will have some good ideas.

Please tell Meg that Randi and I are thinking of her and hope she will feel better soon.

Randi had spinal meningitis when she was 5 weeks old and then the mumps when she was about 4 and she had all her immunizations. So she has always been the one to catch odd sicknesses. But if there is anything I can do let me know.

Does she check her e-mail? I would like to send her cards and stuff like that or just encouraging stories since she seems to like to read.

I am just beside mysefl with this news. Well sweety tell her again we are thinking and praying for her.

Write soon.

Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hey. Sebastion again.
Megan is still hanging in there. She told me this morning that she is going to do the radiation to her whole brain and high dose mexotrate to her spine through daily lumbar punctures. This will make the hair loose on her head most likely permantent. It is her moms descision though if they move her to another hospital. Sloane Kettering is world renowned and people come from all over the world for treatment there. St. Judes is best with kids however. Her doctor is working with St. Judes to get her into a clinical trial.
I wonder if getting rare things makes you more likely to get cancer. Meg had toxic shock syndrome when she was 11 caused by a staph infection in her throat. She spent weeks in the hospital because it shut her kidneys and liver down and she was on a ventalater. At one point they were considering getting her a liver transpant. About a year ago she had lyme disease from a tick.
She has been checking her email. She said to thank you for the pictures. She will write back if she feels up to it. I think she is a lot more scared then she is letting on . Megan hasn't cried once that I know of through all this. I mean I know she does not cry. (I have seen her break her arm, find out her dog died, and find out her grandpa died all without crying at all) but no one is this brave.
I glad your daughter got good news and I am sure Megan is to.

Boldelly · Posted: Tue Feb 20, 2007 11:55 am Post subject: Re: kid with swollen lymph nodes

Well I am glad she is going to do all that is possible to help her. My neice was constantly told "you won't make it till christmas" and she did then it was "you won't make it to easter" and she did she made it 5 years. And Tanya they thought she would die and here she is 30 years old. She had total body radiation and her hair is thin but she does have hair and Jamie had radiation to her brain and back and she also had hair, so tell Meg don't worry about the hair thing it depends on each individual. Well I am glad she is at one of the best hospitals and they are working with Saint Judes, I think that Saint Judes has a lot of clinical trials, same with us and M.D. Anderson Cancer Center in Houston, they have lots of clinical trials. I think if this radiation does not take the spot out of Randi that is where we will go next because her oncologist said if it does not go away then we have to do stronger chemo. I pray that is not the case but have to be realistic about it. I am glad her mom is going to be there for her through this. And you tell her she does not have to be so strong, it is okay to cry and be mad or angry or sad or whatever she is feeling. She needs to deal with her feelings, I know it is easier said than done. Randi has to go to the Psychiatrist today, they are making her go so that she can deal better with what is going on with her.

Tell her if she does not feel like writing then that is fine, just want to keep up with her cuz we care about her, sounds strange that I have never met her and to say I care about her but I do and Randi asks all the time and my parents know so they are asking how she is doing and we are all praying for her. Just tell her to concentrate on getting better and I will continue to write and send her stuff. Rent her funny movies and just try to keep her spirits up and please keep me informed.

Tell her we are thinking of her and praying for her.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. It is Megan. My cancer is all over now so I have to have really hard treatment. I have to have a stem cell transplant. My parents and my little brother aren't matches and they couldn't find one in the donor registry. We have to wait now for more people to register to find a match. I am a really rare tissue type I guess. I think I am a little scared because my chances are really bad now that it is in my brain. I guess those are just statistices though and the survival rate is not 0%. My foot is really numb and I am back on my crutches. Everyone is trying to get me to use a wheelchair but I don't want to. My friend slipped on water outside my hospital room and fractured his arm. They xrayed it and put it in a cast in less then half an hour. I guess the hospital is the best place to break a bone. I hope the radiation works for Randi. Those were nice pictures you sent. I have to wear one of those mask things if my white count gets any lower. This is the best news of the day. I ate a orange popsicle and a pop tart. I haven't eaten anything in a while.

Boldelly · Posted: Tue Feb 20, 2007 7:31 pm Post subject: Re: kid with swollen lymph nodes

Hi Meg, I am glad you wrote me. I know you are not feeling well, hope you well get some relief. I wanted to ask how do they type for stem cells? Is it the same as bone marrow? Find out for me because I would like to be typed to see if I can help you. If I need to register then I can google or call M.D. Anderson in Houston and find out how to do it.

That is good that you are eating some. Just try to eat when you can. You are a strong girl and very brave to go through this and face what you have to face, but don't give up!!!!!! I know that someone some how will come through for you and the stem cell. Find out for me.

I feel in a way guilty that we got some good news and you are not doing so well. I just wish there was more I could do, and the only thing I know right now is to be there to support you and to see if I can be typed for you.

Well kido I will talk to you or Sabastion soon. Keep me informed and I will let you know how things are going with us.

Keep your head up and it is okay to cry and be angry at this whole situation, believe me Randi was and still is to a point.

Take care.

Laurie

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. I have great news. They found a donor for me. Another kid who needs a stem cell transplant had their parents tested. They didn't match the kid but they did match me. My little brother matched the kid. I will get the mom's cells and the kid will get my brothers cells. Jeff(my brother who is 7 years old) is at boarding school in New Hampshire but he will fly out over the weekend for the cell extraction thing. Thanks for offering to be tested though. If I didn't have cancer I would register and be tested myself.
Don't feel guilty. It is great that you got good news. Be happen for yourself and your family.
I have done the whole being angry thing. I actually kicked a china cabinat in our formal dining room. It is filled with my dad's oceanliner collection. Also, slammed a bunch of doors. I have to see a psychiatrist because they will only do the transplant if I can take care of myself after.
Have to go now. It is time for another MRI. They even do tests at night here.

Boldelly · Posted: Tue Feb 20, 2007 9:32 pm Post subject: Re: kid with swollen lymph nodes

I am sooooooo happy for you and the other kid. Your little brother is a brave boy to do such a thing for someone. You are welcome for the offer to be tested. I would have it you needed it. I am glad you are going through the emotions cuz from what I understand it is all a part of it. Randi went to the psychiatrist today and we have to go back next week too. She does not like it much but you do what you have to do. They want to put her on Prozac and he was saying something to the effect that they are researching and finding that some antidepressants and chemo actually help the healing process, not sure about how much of this is approved or reliable. But he was nice and she said he told her when I left the room that "your mom talks alot" I laughed cuz usually I am not a very verbal person. But I wanted him to know all that she has been going through. He had already talked to her oncologist and the social worker so I am sure he had a pretty good idea anyway.

Randi says to tell you she is very happy for you. I told you have faith baby and never give up fight because it is a hard fight. I have had to have that conversation with Randi so many times when she just wanted to quit and I would tell her she can't quit she has to fight this. You find it within yourself to fight!!!!!

I know about the testing at night, Randi used to hate it. We are all done with testing for now. We will find out when she starts radiation I guess soon. She can now have her teeth cleaned (which sounds gross but she is happy) they would not let her when she was doing chemo.

Well honey bunch I can't tell you in words how happy I am for you. You are going to be a survivor just like Randi Renay!!!

If there is ANY THING I can do please let me know. My prayers are with you and just have faith and keep the fight going. Talk to ya soon I hope and if you can't post tell that sweetheart of yours to post and let me know how you are doing.

Laurie [/img]

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi. Finished MRI and I am going to bed now. I had one question though that I thought you could answer. It has nothing to do with cancer but is it true that everything is bigger in Texas.

Boldelly · Posted: Wed Feb 21, 2007 10:32 am Post subject: Re: kid with swollen lymph nodes

Hey good morning, how are you today? I will keep it short for now, one of Randi's aunts (really a 3rd cousin but much older) made her this blanket (more like a little throw) and Randi loves it because they let her use it in the cold rooms where they do the tests (PET scans and those type tests) and they all complement her on her blankets. I don't know if you have heard of toe socks, they look like gloves but they are socks. Randi loves to wear them and I was wondering if you might like some and her aunt wanted to make you one of the blankets, if that is okay. Just write me back or have Sabastion write and let me know if you would like one or not and then I can figure out how to get them to you. A lot of my family know that we have been talking and are always asking about you and we are all saying prayers for you. Hope you have a good day today but write and let me know how you are doing.

Laurie

Boldelly · Posted: Wed Feb 21, 2007 10:38 am Post subject: Re: kid with swollen lymph nodes

Ha Ha I was waiting for you to ask that question. I have never been out of Texas so I am not sure I am the person to ask, ha ha hee hee. I am sure things are about the same size. I am not sure where they get that from. Well I am glad to see your spirits are up enough to be silly, keep it up kido!!!! Razz

Laurie

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