Survivors guilt

After a recent death of a little girl who battled the same horrible disease as my daughter, I feel not only distraught, heartbroken, lost, but guilt striken. It was eating away me yesterday to the point where I could not stop crying. My kids were asking what was wrong, but I didn't have the heart to tell them.

Especially loulou. I know that when she does find out, she will not only be extremly sad and emotional, she will become panicked. That is the way her mind works. She will ask me hundreds of times a day if her cancer is really gone, am I sure it cannot come back, will she die. As selfish as it sounds, I can't deal with those questions right now.

A's death has brought back up, not only a lot of guilt on my behalf for having a healthy, cancer free child, but the terrible memories of this disease and all she went through in those years. Memories that I believe I surpressed for many years. Bringing them up are very hard on my mind, my well-being. I can't focus on other things, I walk around crying all day. I try to keep myself occupied but my mind always wanders back.
Not only to the days of radiation and chemo, but the day specifically when we heard the news. The worst day so far in my life. Riding to the big hospital in my little car for an hour, just staring in the backseat at my beautiful two year old and feeling that they just handed us a death sentence for her. The swarm of doctors and specialists we encountered that first week and the emergency 4 hour brain surgery she had while I sat outside clutching to her favorite doll that went everywhere she did.

I want to cry and scream and claim this world, God if you will, unfair. Why punish the weak and innocent? Why must the children suffer? Why do I feel so guilty that my own child lived and theirs did not? Why can't M be strong enough to hear my distress? Why do I suffer in silence?
But cancer is non escapeable, there is not fire ladder, no exit sign or rope to pull anyone up. It is what it is...why can't we cure it.

Quick update

Sorry it has been a while. Been busy here. Emma saw the specialist yesterday and it looks like we will be on our way to Boston as soon as they can fit us in. We go back to the specialist, here in Maine, in 2 weeks for some scans/bloodwork, and to see how she is handling the meds they gave her.

I know that her diagnosis is certainly not the worst thing in the world but it is quite devastating for us. It has made her very immobile in the past months and depressed, along with the undying insomnia.

The scale said she has put on 11 pounds since it all began. We will have to shop for new clothes this week. Her pants are skin tight! She almost cried when the doctor said there was no cure and that she will have to live with it for the rest of her life.

I hope we can get some answers soon!

Its all set

Loulou's appointment at the endocrinologist. We are lucky enough to have a slight pull from the oncologist, and will not have to wait the 6 months to get in. We go in to see Dr.A next month.
I got some great, yet way overdue, info on the growth hormone(GH) while we were at cancer clinic last week. I really wish I would have gotten the info sooner and I might have opted to give L the hormone alot sooner. But whats done is done now. I was very uniformed and naive in thinking that a GH deficiency would and could only affect her growth, height wise. From the info that I got, it seems it can do a number on your emotions and overall health. Wouldn't it be wonderful if this GH was the magic ticket we needed to get L back on track, physically and emotionally?

I think M and I are both at the point where we know something needs to be done to help her grow. Of course, the serum is not 100% but she feels so down on herself now, that anything, even a bit of hope, has really turned her spirits up.

The only down side, so far, is that I have yet to investigate the side effects. I know I have info on it, but I just don't want to look at them yet. But I will.
Oh, and of course, the office for the endo is not near me, so I will have to be traveling.
Of course, M isn't the typical husband and can't babysit me to every appointment so I enlisted my mum to go to the first one. Not only to have someone else to absorb the info from but she has that nice Garmin in her car so we won't get lost!

I am so

tired and emotionally drained. The past month has been a whirlwind of change and drama filled days. There has come a point where any sane person would snap. I think I past that point but am holding onto sanity by a thread for the sake of my children.

I am counting down the days until I can talk to someone. I think a sounding board is all I need to start to feel better.

Making a clean start

This post would have looked much better at the beginning of the year, when everyone is making their resolutions and plans for the upcoming year. As usual, I am a little late.
Being a sahm mom, I have alot of time, not to myself, but for my mind to think and wander. Lately, it has been wandering around, in circles, in the spots I don't like. Hence, the clean start. I have allowed certain "toxins" into my life, not all by choice. Some, I have let in with good intentions and they have chosen to plant some weeds in my life. Nothing that a little Round-up won't fix!

So, I am at the beginning of a pre-spring cleaning! Unfortunately for me, this will take much longer and be more heart wrenching than just digging out the mess in the spare room, or a closet.
This, I am hoping, will help lighten the load for me, make me less stressed. I need to be more emotionally stable and available. I need to stop letting certain ideas/things/people, have control over my life and my happiness. I need to worry about me for a while.
So my future posts might be whine filled while I purge my life of certain negative aspects, even my fav junk foods....bear with me.

So I have asthma...err, I knew I had asthma, it has just gotten to the point where ignoring it isn't working. I have been struggling for a few months now but it finally got to the point where something needed to be done. A trip to the doc was in order.

Not only have I been ordered to use the mother of all inhalers, but I was told I would be going on a 10 day course of prednisone(steroid) too! I told the doctor that I was still breastfeeding but he said that he has to treat me and my symptoms, and that the positives far outweigh the negatives if I don't take them. Seems my airways are in a constant state of constriction now and the medicated inhaler is not enough to clear them up. I am very concerned with this. Both the prednisone and the inhaler have warnings on them to not take while breastfeeding and I am struggling with the idea of using them while nursing Sam still.
I have yet to start the prednisone(am suppose to start Monday) and am not using the inhaler since I picked it up yesterday, but I know I must.

Anyone else going through this? Or just have asthma and can sympathize? I have been using the peak flow meter as well and would like to know what falls in the normal range and what others get for a number when used.

Depression/suicide

Does anyone know what the warning signs are? Can you slink down into depression so quickly that you feel that suicide is the only option?
What are the steps you take if you feel someone is suicidal? Or you are unsure if it is just depression?
I could sure use some help. Thanks!

Its going by too fast....

my little guy's first year of life. I brought him in for his 1 year check up at the doctors today. He is still pretty much a midget. He weighed 17 pounds on the dot and was 29 inches long. He had 3 shots, he was suppose to get 4, but they were out of the HipB vacc. We are on the waiting list for when their stock is replenished.
He was not happy about any of it of course, neither was I. I was also told that they needed to check his iron levels (new state law) and something else, via blood work. I couldn't hear over Sam's screeching.
Of course, the lab techs were awesome but Sam was wiggly and upset so they had to stick him more than once. He now has a giant bruise that covers half his little arm. Okay, I exaggerate but it was horrible and his arm looks terrible.
Hope he doesn't spike a huge fever :(

Edited to add a pic of my big/little guy today.

The big birth control debate

My oldest daughter, Emma, will be 15 this fall. She has had a few boyfriends in the past and claims to be madly in love with some boy we will name Z. They are not dating, as of yet. My daughter is an easily influenced child and succumbs to peer pressure pretty easily.

Because of this, I would like to take her to my OB/GYN, and have her looked over and placed on birth control. Her father, of course, is not loving that idea. Mark and I are polar opposites on most issues/religion/politics. He believes that if we put her on birth control, it will just be the go ahead she needs to start being sexually active. To me, that is the point. Whether or not we like the idea, Emma will become sexually active and probably before she is out of high school. I would rather her be protected when that happens and not stick my head in the sand and cross my fingers that she will never have sex...well, at least not until she is 30.

Now, this isn't one of those I am right, Mark is wrong posts. And trust me, if you read my blog, you will come across numerous posts of that kind. This is simply a vent post. I don't want to be forced to go behind Mark's back and stick Emma on birth control, but I if that is the only option, then I will do it. Its a quality of life issue. What life is she gonna have if she is pregnant at 16?

I also need to go over the condom speel with her too. You never know who is carrying what out there and I don't want her to feel that just because she is on the pill, she is safe. I can't believe this is my life!

Immobility = declined life?

Mark got the call the other day that his 92 year old grandmother, who lives alone, had fallen down and was stuck there for 2.5 hours. She has one of those Lifealert bracelets but since she was on the phone when she turned and fell and was on her old phone, not a cordless, the lifealert doesn't work.

Her daughter came over after getting her hair done, to check on her and found her. She is better now but not the same. Pretty shook up and not wanting to move around as much. Her husband, after a fall a few years ago, declined pretty quickly and died 2 years later. I am afraid, with her age, and her decreased activity, that she is going to pass away before the years end.

This woman has always been super busy and could run circles around me, even at the age of 80. In her mind, she is a 30 year old woman, trapped in this old body. Her whole life has changed drastically in the past few years and she is definetly not use to having to depend on anyone, for anything.

We went down today, to visit and plow/shovel her out after the big snowstorm yesterday. She seems to get worse everytime I go down. I know it is the way of life, but it is just so discouraging to see and deal with. I feel so badly for Mark. He was raised by his grandparents. Was extremly close to both of them, especially his grandfather and to have lost him, and now his grandmother being in such rough shape, lets just say it is taking a toll on him.

Its that time of year again

Logan's MRI was scheduled today. She has them twice a year as a prevenative I guess you could say. She also is due for alot of blood work and a bone age scan. Last time we checked her bone age, her bones were aging more rapidly than she was. :(

Please keep your fingers crossed for my little girl that everything is normal and she is still cancer free!

My poor eye :(

As you may have noticed, I have not been updating my blog since Thanksgiving. Sorry about that. I have been dealing with a sick baby(ear infections) and not feeling too well myself. While rocking Sam to sleep a few nights ago, after listening to his cry and fuss for hours and running on little sleep, he reached up and dug his fingernail right into my eye. It hurt immensely and starting watering up. I couldn't open it for a few minutes afterward.
The next day I wake up and it is closed up and red and watery still. It feels like there is a piece of sand in my eye and as much as I try not to, I rub it all dang day. Which just tends to make it worse. I ask the doctor to look at that night when I bring little S to the doctor and she did the eye dip test and said my cornea was scratched. It feels much better already, even after just 1 day of drops.
Just a little update on me. Hopefully I will back to my old blog logging self now!

I got me the sniffles

Anyone know anything to help a really bad cold that just won't go away? Usually I don't self medicate, or medicate actually, but hubbys cough is so bad.
This cold came on fast, out of nowhere. Wednesday he had a runny nose and watery eyes, with a cough here and there. Thanksgiving morning he woke up with the chills and a cough so severe, he couldn't sleep. He stayed home for Thanksgiving because he felt so crummy.

We have tried Delsym, Tylenol PMs(to help him sleep) and Nyquil. He went to work today but I know he feels so wiped out and I hate to see him sick. Especially since he is a man, and we all know how they deal with any type of sickness. In other words, he is a whiney baby that is driving me crazy!
Any help would be bueno!

My lumpy boy

I have always called my little man a lump. He is 10 months now and is still has chosed the land of immobility. I worry about him but then I look at him and see that he is thriving and progressing, just maybe not as quickly as the rest of the babies his age.

As you can tell by the picture above, he is quite happy and I have always said that his social development is phenomenal! Keep an eye out for an overload of pics soon.

New things

Are you good at trying new things? New foods, new hobbies, meeting new people?
I stink at it. I find immense comfort in familiarity and find it hard to think and look outside the small box I have made around myself.

I think the hardest for me is meeting new people or going new places. For one, I hate getting lost. I have this insane fear of it and refuse to travel anywhere "new" alone because of it. It really inhibits my ability to do certain things and go places with my children at times.

Number two, I clam right up when it comes to meeting new people face to face. Gimme a phone though, and I can yak your ear off. Dunno why that is? Even if I have talked to said person in great lengths over the phone, when we meet up in person, I get real quiet. Makes me wonder if that person thinks I am not genuine?

Juvenile athritis?

My oldest daughter, Emma, burnt four of her fingers in a brownie baking incident a few months ago. Since then, she has had issues with one particular thumb. It keeps swelling up, no redness or puss, just unbelievable growth and of course, pain for her. She has complained about it off an on since.
I brought her to the ped's a month ago about it. She had an x-ray of her thumb tooken, along with some bloodwork. All comes back fine. Ped knows we have no insurance and says the next step is a specialist and it will be pricey. She said that Emma wasn't in any imminent danger and if we wanted to wait, just to call and she would give us the recommendation to the specialist then.
Of course, I didn't want to wait, my kid was in pain but I had no choice with no insurance.
Well, poor Emma has gotten worse so I called today about seeing the specialist. The ped set it up for this Friday. I am hoping that it is nothing, but how can it be when I have seen what it looks like. On top of it all, her foot on the same side has been swelling and hurting her for the same amount of time too.
Coincidence?