jordan1980

Hi all,

I am posting again tonight because I am feeling really helpless. For those of you who haven't read my other posts. We have just been told that our 2 year old son may have a pituitary tumor (the pituiatry is in the brain.)
I am just feeling really down right now. It is late, hubby and both kids are asleep, and I am up crying and worrying about my baby.
During the day when I am up and about, I put on my brave face. When someone asks me how the doctors appointment went I tell them, and when they say oh my god I am so sorry, I just say no no don't worry it is probably nothing. It's weird but I kinda just put the worry and sadness away, so nobody else gets too worried!!
I don't really say much to anyone about it. Inside I feel like I am going to die. My children are my life (as with any mother,) and I just don't know how to explain the disgusting hole i feel inside right now. I haven't been able to sleep, I am only getting about 2-3 hours a night.I haven't been eating except for a small snack around lunch. I am running on empty both emotionally and physically.Which is super hard because I am a stay at home mom with two boys aged 31/2 and 2. I went to the doctor, who prescribed me adavant for the axiety and sleep deprivation. It hasen't helped me at all.

I just needed to get some of this out. I am afraid....I have never been as afraid or sad in life before. I just don't know what to do.
Thanks to anyone who reads this, or posts.

minnie

(((Jordan)))

This is such a tough time and I so feel for you.

You need to look after yourself - try eating little things during the day, maybe just a cracker every once in a while. Not eating can make the anxiety feeling worse. Post all you like about your feelings here. We're all here to support you though this. Keeping those emotions bottled up is really not a good thing.

Do you have anyone to talk to? A counsellor, someone from a church, a good friend? Are there any support groups for parents in your situation? Also, did you get in touch with Benefits? I know she has had the same condition and I know she has offered to share her experience. Tap into all the support you can get. No-one will think less of you because you do that - heck, we would all feel the same in your situation.

Take care, hon. Hope you get some sleep soon.

Love

Minnie
xxx

walkingtheline

Awww Jordan, I just ache for you.

First of all, you need some rest. Warm some milk...find a way to settle down a bit. Try to eat a bit more, keep it light and simple yet healthy, just try a few more bites. You being sick (or cranky from being tired) will not serve you well.

When I was a very young mother (a long, long time ago in a galaxy too far away hehehe), my oldest and only at that time developed what they said was mumps. She was ten months old. Only they didn't go away. And the glands swelled more and more...she began to resemble a chipmonk rather than a baby.

Doctor visit after doctor visit. One day they said, "we think she has glandular TB." Scared the you-know-what out of me. OMG, I kept thinking, TB!!!! I read (no internet then)...I cried, I worried. A week later after a great deal of tests....no TB. A staph infection in her glands.

"May" is the operative word in your post. Let them test. Let them figure out what's up. Listen to their advice. You KNOW even if it's tumor they're rarely cancerous and you know that if it's a tumor it's treatable. In many ways this glass is more than half full rather than half empty.

Reach out to your HP. Ask for peace, for guidance and ask that he hold you close. Turn to your church, your friends, your family. Reach out rather than keeping it all in, people really do care. If they ask how they can help, give them suggestions, i.e. "Could you keep him in your prayers?" "Could you keep his brother for the afternoon while we're at the doctors?" Keep coming here and talk to us. Many parents on this site have faced health issues with our children. Keep coming to us, we're hear to listen, to offer suggestions and to simply offer a hug and an ear.

Be gentle and kind to yourself.

(((Jordan1980)))

jordan1980

Minnie,

Thanks for posting so quickly, it makes me feel good to know that someone is out there tonight. I did PM benifits today, I am sure that they will get back to me soon. I am trying to eat, but when I do I get really queasy and feel like I need to puke. The only person that I have been able to talk to is my best friend......and even then I don't really tell her exactly what I am feeling right now, I guess that in some weird way I think that if I don't talk about or express my REAL WORRIES it it's not going to happen. I know that it sounds crazy but everything that is going on right now just feels like a really bad nightmare.
I am so lost right now, my head is all fuzzy, and I just feel numb. I can't believe that my baby, my little chubby cheeked, smiley,small, happy little Jacob could be sick.
You know that I haven't told anyone......not even my hubby or parents how this has really affected me. It's weird because I know that they are feeling the same way. My poor AH is devistated, I can see it in his eyes, when he comes home and plays with Jacob. I know that one of his biggest fears was our kids getting sick.
We wouldn't be so worried but the doctors told us that it is a 90% chance that it is a tumor.
UGGGGHHH I am sorry I am rambling.....AGAIN.

jordan1980

Walkingtheline,

Thanks to you to......you must have posting while I was in mid post.

minnie

I TOTALLY understand about not talking about something because otherwise it seems too real. Denial protects us sometimes. You know what though? Coming out of that denial helps us to feel more in control.

One thing I have learned over the past few years is that the people around me will pull out all the stops to help if I ask. If I don't let them know what is really going on and I tell them I'm fine, then they let me get on with life on my own. The only way to get the support we need is to ask for it. Give it a go. If you are all honest with your feelings than you can give each other the support you all need.

Ramble all you like. No-one is going to judge you for it.

Love

Minnie
xxx

walkingtheline

AMEN to that! Most people feel very blessed when they're allowed the opportunity to serve others. Try to think of it in those terms--you're actually giving to them when you share your thoughts and fears.

Thank you for turning to us this evening and I hope we've been a tiny but warm listening post in this huge city known as cyberspace.

CodeMaster

All I can say is life is mysterious and whatever happens it meant to happen by destiny, though it may sad, everything happens for a reason and I think sometimes destiny brings peopl together even closer with love by doing mysterious things and I just keep in mind that the very meaning of life is love and there is nothing more to life then living a fullfilling life of love, whether that be a long life or short, if it was filled with love, it was a meaningful and the purpose of life has been found. That is all we can expect because we really dont know if we have another day and when we die whether it be long time from now or tomorrow, the only thing that will run through our heads is every single person we have loved in this short life time destiny has allowed us to have.

Loves to you...

closethippie

jordan1980,I am so sorry to hear of this. My heart goes out to your little Jacob and you. I know this is very hard on you.
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face.
There is a book a nurse friend of mine recommended. Called, "Why Mine? For Parents Whose Child Is Seriously Ill"
by Joy Johnson, S.M. Johnson, Billy Williams. Its for parents whose child is seriously ill. This simple and supportive booklet covers other children, your marriage, anger, hope, depression, single parents, and community people. When your child is ill you come to know a lot about fear. Fear of the unknown. What will happen? Fear of treatment. What will they do?
She said this could be of some help.
Please keep posting and know you are never rambling. You are voicing your thoughts,fears and it does help to come here.

FormerDoormat

Jordan:

Sending prayers that the outcome for your sweet boy will be fine. A friend of mine had a pituitary tumor about five years ago and it was removed successfully and she's doing just fine today. So the chances for a good outcome are good.

As a mom myself, I can't even begin to image the worry and pain you're going through. Post whenever you need to, we'll be here for you.


(((Jordan)))
(((Jacob)))

splendra

Love,((((Jordan))))

I am sending out prayers for you and your whole family. I don't know how I would react in your situation. It must be so terrible to have to face this. I know you must be looking for every ounce of courage you can find. You and your son are in God's hands as we all are. Believe in healing no matter what else you are feeling. Love!

JT

There have been a couple times in my life that I have been in crisis mode. The first was a disaster with me reacting and all that goes with it. The second was very different. If there was something that I could do, I did it...right now. If there was a phone call to be made, a fact to be checked...I did it. Then on to the next thing. On the other hand, if I was satisfied that there was nothing I could do right now....I consciously set it aside. Somehow this allowed me to have a clear head and sleep came easier. Doing kept me busy and when all was done I could rest body and mind.

The other thing that was different is that I let my husband in rather than being the strong, stoic one. And he rose to the occasion...we all need to feel needed. By shutting him out I was denying both of us...me the comfort and him the opportunity to offer that comfort.

This will pass Jordon...I promise.
Hugs,
JT

benefits

Hi Jordan, I am so sorry that you are going through this I know how hard it is to watch your child go through something like this. I know when I went through this last year it was harder on my parents than it was on me and I was 32 years old at the time and my mom had a really hard time watching me go through all of this. I know it's hard and this probably doesn't really make it a lot easier but believe me when I say the surgery was much easier than I thought it would be. It is one of those things that sounds much worse than it really is. I hope that doesn't sound cold or anything I am really trying to help ease your mind. I tried to email you at the address you gave me and for some reason I couldn't - probably something wrong with me or my computer - trust me we are both old and worn out!!!!
Did your son have an MRI yet??? It was from the MRI that they found my tumor and from there they could determine the size of the tumor - under 1 cm is considered a micro tumor, over 1 cm is a macro tumor. I had a macro. There are a ton of different ways to treat the tumors - if it is a micro tumor they may be able to treat him with meds. I actually have a friend who has been treated with meds for the tumor since she was in high school and she is doing really great - no problems and no growth in the tumor. She did have some problems with her mestrual cycle a few years ago but the doctors changed the meds and she is fine. Depending on the location of the tumor (ie - how close it is to the optic nerve) they may be able to do Gamma Knife surgery. If your doctor has not discussed this with you yet definately ask. This is a fairly new very high tech surgery that is used to treat brain tumors. It is actually a radiation and laser surgery where they beam high does of radiation on the tumor and attempt to kill the DNA in the tumor so that it will stop growing and possibly even shrink. This surgery is amazing - if you can, google it and see what you can find on the internet. With Gamma Knife the recovery time is a couple of days, there is no invasive surgery so no scarring, etc.
If the tumor turns out to be macro and it is close to the optic nerve (which was my problem) they will probably need to do traditional surgery. The surgery I had was complicated but my doctors where excellent and I bounced right back. My surgery was performed by and ENT and my neurosurgeon. What they did was make a cut inside my mouth right above my gum line, then they took one of those tiny camera scopes back under my nose to the pituitary gland and then removed the tumor. The surgery did take several hours (I think 4). The worst part is really the post op because they had to pack my nose to stop the bleeding and I had to have it packed for 2 days. It really didn't hurt but it was uncomfortable. After the packing came out I felt a million times better.
I could tell you more but I see that this is already really long - sorry everybody!!!
I will try to PM my phone number to you and if you want please feel free to call me and we can talk about this - I'm not a doctor or anything but I did do alot of research last year when this all happened to me and maybe I can give you a little reassurance and then maybe you can get some sleep!!!!!

Cap3

********{Jordan,Son,family}}}}}}}}}.
When serious things happen to a family member.The first thing it seems that the family does is to seprate from each other,emotionally.Each in their own pain,trying to be strong for others,while dieing inside,not letting others know the real feeling/thoughts,inside.When really this is the time to reach out,share with each other.This is so very common.There has been so much written about this.society pounds the false idea,we must always be strong.Forgetting,We are human.I feel, i think,i cry,i go through many,a, process,to eventually have peace,acceptance..etc..There is a time to laugh,a time to cry.Today i don't cover, for my family or anyone,to protect them,or whatever it was that i was trying to do years ago,not letting them in,and sharring,what im really feeling/thinking.Its too hurtful to me,and oh so draining on me,to carry this load by myself.They know.They are there for me,as i am for them.And this has made us stronger together.Together we stand,as a family.,through crises..Divided,we fall,as a family.,through crises..I try to remember this,if i feel like keeping things inside of me,to grow and fester.Getting it out,sharring,has helped me so much.And sharring how they can help me.,because i know what i need at the time.Sometimes i just need for people to listen.To let me get it out.Sometimes,i need to hear others sharring their own experience,hope and strenght.....God is always with you.To help you,see you through.
My prayers for your son,and all your family...
God Bless,

humming bird

Read your post and I am sending you a hug tonight and a hug everynight until you do not need them anymore.

I am also sending many prayers your way!!!! I hope everything will be okay.

Buster

My heart goes out to you jordan - all I can say you must take care of yourself first - hang in there

queenofthehwy

Jordan,

There is so much good advice above I really can't add anything else, I just want you to know that I am thinking of you and your family and will say a prayer for you all.
love,
Mindi

kimmyf1965

Hi Jordan!!
I'm so sorry that you are going through this. I'm not sure if you've read any of my post but I have a little boy (14) that has duchenne muscular dystrophy. When we where going through to diagnois stage of his disease I remember not sleeping and not eating. It seemed like life went on around me but I was in another zone. I know your situation is totally different but I just wanted to tell you that you are an amazing mom. My son (Kory) was diagnoised 8 years ago. I still have my "bad" days but he keeps me strong!! Stay strong & I'm sending prayers your way!!!

brightlight

I said a prayer for your Jacob. My son's name is Jacob too and I know that I would be just as worried as you are. Prayer is powerful. I know a woman who told me that when her granddad was a little boy he was burned really bad from boiling water. The big pot of boiling water used for washing clothes tipped over on him. His mother had to put him in a wagon and take him to town. The doctor said he would die and there was no hope. The mother and father went into another room and prayed to God to save their son and he lived. Doctor said a miracle. He lived with hardly a scar from that accident and he was burned very badly back when there was not any antibiotics and things like that. Take care of yourself, your children need you.

herewegoagain

Jordan -


My situation with my son is different, but I do know the fear and anxiety you're feeling. He was diagnosed with food allergies when he was a year, and for the next 7 months, he had bout after bout of diarrhea. In that time, he had two normal stools...TWO. The rest of the time was either very soft stools, or diarrhea. He'd go up to 8 times a day...blow out several diapers. There were several times I had to bathe him in the middle of the night because he would be absolutely covered in his own poop. He got the worse diaper rash I've seen on any baby - layers of skin were coming off. As soon as he pooped, he'd start to cry because it would hurt so bad, and because he knew it meant he'd have to have his diaper changed. We kept going back to the allergist, who was absolutely useless. I was left researching on the internet. We went and got a second opinion. She said he was outgrowing his allergies, but may possibly have celiac disease (an allergy to glutens that if left untreated, skyrockets your chances of cancer, among other severe illnesses). The only way to conclusively diagnose it is to get a biopsy of the small intestine. Although growing well, he was in danger of becoming malnourished. The second allergist sticks her head in the door and says "oh by the way, have you ever had him tested for cystic fibrosis ?" When I looked at her wide-eyed and in shock, she said "oh, it's just a sweat test." Well - I wasn't concerned about the test - she just casually mentioned a death sentence for my son, as if she was talking about the weather ! I looked at a cystic fibrosis web site, where they were excitedly talking about how current treatments can extend their lives into their 20's or 30's ! 20's or 30's ?!!? I tried so hard not to panic, but it was always in the back of my mind. My mood, sleep, work performance, everything...declined. I had specifically asked his first allergist if the soy milk he was drinking could be causing all this. He flatly said "no." I prayed to God many times and BEGGED him to please let my baby be healthy. I said "do what you will with me....let me have whatever illness he may have, but please just let my baby be healthy." A few days later I stumbled across a post on an allergy website where people were discussing the same symptoms as my son's, and they were caused by soy milk. I immediately switched my son to rice milk, and within 24 hours found a huge improvement. Within 3 days he was having normal stools. It's been nearly a month now, and he hasn't had diarrhea yet. He's never gone more than 2 or 3 days without diarrhea. I definitely think God brought me to that post on that website. Most people don't realize the severity of food allergies - I know I sure didn't when he was first diagnosed. In many cases, it can literally be a matter of life and death.

So although my situation is different from yours, I do know your heartache, your grief, your helplessness, your fear....and I am truly, truly sorry you're going through this. I wouldn't wish those types of feelings on my worst enemy. I agree with the others - post here often, get support from a therapist or minister...you need it in this very difficult time. My heart goes out to you and your family, and I pray that your son will be ok.

Heather