An agreement

Chris and I have reached a ttc/adoption agreement. You see, Chris isn't ready to be done. He wants to jump into soy if I'm not pregnant. I, on the other hand, am very ready to be done. After four years of losses and infertility, I'm ready to move on.

We talked about it again this morning and have agreed that we will continue to pursue adoption as planned. I have promised to not rule out soy but have asked to at least take a break for an undetermined amount of time.

He doesn't seem overly happy with the decision but he's not protesting it either. I need time for me. I need to get away from it all...get rid of the stress. We will not be preventing, but we also will not be actively trying to conceive.

Left behind?

Every few months or so on my RPL support board, we go through a changeover of sorts. It usually consists of a number of members getting pregnant. In my experience, when several conceive at the same time they almost always go on the get their rainbows together. Of course with new babies the members start posting less and less. (And who can blame them?) Occasionally a member will come back with occasional updates or even to rejoin the board as a ray of hope to the remaining ladies.

Usually around the time of the BFP boom we also undergo an influx of new member. This is what is happening now. We've had three new members this past week. I can't help looking at the board and wondering if once again, I'm going to be left behind. I've lost count at the number of women that have gotten their rainbow since I joined. Heck, I've lost count of the number of women that have gotten more than one rainbow. All the while, I sit back and smile and wish them the best. I am happy for them and am truly glad they are getting their miracles; but it doesn't change the fact that I want so badly to join them and am still so unsure that I ever will.

HEROES NEEDED

I am reposting a friend's blog post with permission. If you would like to visit her blog, you may do so here

This is not one of my typical posts since moving over to here. but its something I need to say, to share. Because I can relate in some small way. Because we once needed the hero.

I can still remember the day we were told Joey needed a Bone Marrow Transplant. And the thought that crossed my mind was “will there be a match?”

I was terrified. I help my breath. Melanie was tested. I felt so defeated when the results showed she was not a match. More tests… more waiting.

When I first called and there were “no matches yet, but some possibilities” I was scared. I was always afraid that a call would come that they just had no match for him.

Then the call came. I hit the floor, crying. I was in the laundromat when they informed me he had a donor. I can not tell you the feeling of being told your child has a hero.

Please, heroes are needed every day. Every child deserves the best chance to grow up they can get. I am asking, are you willing to be that hero? Are you willing to help save a child?

I ask because there are children whose lives hang in the balance, whose lives depend on a complete stranger giving a selfless gift, marrow. Children like Austin who need a match and don’t have one. Please, today, register as a donor. Register today and help save children like Austin. Give this family the chance our family was given… you will never regret being a hero… I am eternally grateful to Joey’s donor, and I write her letters, praying one day to thank her in person.

Change of tone

Within a few weeks the content of my blog will be changing some. I'll still talk about our angels, but the ttc aspect will no longer be here. We are done with medical assistance after tomorrow. If tomorrow's IUI does not work, we will be moving to adoption and that will be my main focus here. If it DOES work, then hallelujah I'll get to talk about pregnancy fears.

Today, I've already killed my phone battery. I had to call and cancel a job for tomorrow because of the IUI. I then called on some adoption options and of course called Chris at work to discuss it all. I have another call to make and hope to be sharing more details soon.

"Rare But Equal"

Today is the 3rd annual Rare Disease Day. What is Rare Disease Day, you ask? It is a large event organized by EURORDIS in in an attempt to raise worldwide awareness for all rare diseases. Forty countries are participating this year (including the US). There are 7,000 rare diseases in the US. Combined these diseases affect at least 25 MILLION Americans. To learn more about rare diseases in general, go to the Children's Rare Disease Network.

In honor of this day, I have chosen to do a special blog entry to raise awareness. I will be talking about five diseases, all of which affects someone I know. If, at any time, you want to know more about any of these diseases, please feel free to comment or email me. Also, all headers are linked to pages where you can find more information.

Langerhan's Cell Histiocytosis (LCH)
LCH affects 1 in 200,000 children and 1 in 560,000 adults. 76% of all LCH patients are under 10.

Langerhan's Cell Histiocytosis is a disease that acts (and is treated) like a cancer yet is not classified as one. It caused by an overabundance of histiocytes (white blood cells) that accumulate in various areas of the body causing lesions and/or tumors to form.

Treatment for LCH includes chemotherapy, steroids, radiation, and, rarely, a bone marrow transplant. Despite treatment, the disease can and does prove fatal far more often than anyone cares to think about.

Hemophagocytic Lymphohistiocytosis (HLH)
HLH affects 1.2 in 1,000,000 people under the age of 15.

Hemophagocytic Lymphohistiocytosis can either be genetic or secondary to a virus. (Yes, something as simple as a virus can be the start of your nightmare!)

When a person gets sick their t-cells and histiocytes (i.e. their immune system) activate causing an inflammatory reaction in order to fight off the illness. In a person with HLH a defect in their immune system allows this inflammation to exist. Essentially, their body is attacking itself.

HLH is treated with immunosuppressants and chemotherapy. This treatment is usually followed with a bone marrow transplant in attempt to rid the body of the disease once and for all. Without treatment, HLH usually proves fatal within two months. Even with treatment, the disease can be fatal. Not only are immunosuppressants and chemotherapy risky, but bone marrow transplants can have long-lasting and potentially deadly complications.

Juvenile Xanthogranuloma (JXG)
JXG is probably the least researched of the histiocytic diseases. Not much is known about the disease.

It is unknown how many are affected by this disease because it is thought to be misdiagnosed most of the time. Since the disease can go into spontaneous remission, these patients may never get their true diagnosis.

Patients with Juvenile Xanthogranuloma often exhibit as a rash as their first (and sometimes only) symptom. However, JXG can also effect a persons eyes, brain, spinal cord, lungs, liver, spleen, and other organs.

Because so little is known about JXG, there is no standard treatment. Sometimes, nothing is done. Other times a patient may undergo surgery, chemotherapy, or even radiation. When it comes to JXG, nothing is "outside of the box."

Diamond Blackfan Anemia
Diamond Blackfan Anemia is characterized by the failure of a persons bone marrow to produce red blood cells. Most patients with Diamond Blackfan Anemia are diagnosed in the first year of their life.

Patients usually start treatment with regular blood transfusions (which results in a build up of iron in the body causing the need for chelation therapy). The goal is to get them old enough and healthy enough to start corticosteroid therapy in attempt to send the disease into remission. However, this doesn't always work and some patients go on to receive a risky bone marrow transplant.

According to the DBA Foundation, 40% of all DBA patients are transfusion dependent, 40% are steroid dependent, and only 20% are in remission from the disease.

Fanconi Anemia (FA)
Fanconi Anemia is a genetic disorder that leads to bone marrow failure. The average life expectancy of a Faconi patient is 24.7 years.

Many people with FA will develop Acute Myeloid Leukemia (AML) at an early age. Even if the person, doesn't develop AML it is extremely likely they will develop some form of cancer early in their life.

In addition to the cancer risk, patients with Fanconi Anemia may have thumb and arm abnormalities, skeletal abnormalities, kidney problems, a small head or eyes, gastro-intestinal issues, small male reproductive organs, and/or heart defects.

Medically, doctors tend to work on managing the symptoms until the patient is 8-12 years old when the child undergoes a bone marrow transplant. A successful bone marrow transplant will cure the blood problem but the patient will still be at an increased risk for cancer.

How you can help:
Share your new knowledge. Share the links I have provided today. Write your congressman asking for government funding to save the lives of these children.

Donate blood and platelets at your local Red Cross or hospital. Sign up to be a marrow donor. Host a marrow drive to sign others up!

You can even donate monetarily at any of the sites for research.

Missing out

I love my niece. I really do. It has been an amazing 16 months watching her personality develop and seeing the joy in her face when she learns something new. As much joy as she brings to my life, she brings some pain as well.

I am jealous of her mother. My sister was not at all ready for a child. Niecelet's father is much less than ideal. In fact, he hasn't even seen her since Christmas.

She's also a reminder. Aiden would be four months older than Niecelet. Watching her grow up and do new things is a reminder of what he would be able to do already. She's already pairing words together to make mini-sentences "See dat?" "Did dat." "Da! Ca!" (Dad! [gpa] Cat!) She's running, jumping, playing hide and seek, spinning herself in circles until she is incapable of standing...and these are just her new things. I will never get to see Aiden (or Dominic, or Gwen, or Jill) do any of it and it hurts. :(

Then and Now: Depression

Last night I got to thinking about 4.5 years ago and comparing it to now. I was amazed at the change I see.

Four and a half years ago, about the time I met Chris, I was in a very dark place. I was suffering from Double Depression. I was suicidal and I was a self-injurer (which was very separate from the suicidal bit). I am not proud to admit this, but am not ashamed either. It happens, people need to realize that most of the time, it's NOT just a cry for attention. I was very sick mentally. I will not go into an awareness rant here, but if you want to know more about it, email me. What it boiled down to was I did not know how to handle my stress and emotions.

Since then, what I've been through is so much worse. In the last four years, I've four losses and a lot of financial stress. Nothing every compares to losing your children. Yet, somehow, mentally, I'm so much better off. I'm not at all suicidal and I do not self-injure (and haven't since Aug 30, 2006!) though I do think about it from time to time.

I think part of why I don't give in to those thoughts is because I won't let myself forget how awful that time of my life was and how truly addicting self-injury is. I won't let myself forget the pain...not the physical pain-that was nothing...but the emotional pain. I do NOT want to be like that again. Therefore, I do everything I can to not allow my brain to go down that path.

One thing I've had to learn in order to be successful with this is how to better handle stress. Sometimes, I get crabby and take it out on others(just ask Chris!), this is the best way to handle it, and I hope to improve there. The most effective I've found is talking about it. I vent on FaceBook, I vent in chats, I post here. I do whatever it takes.

A few weeks ago, I had a slip up where I was not effectively handling my grief. I could feel myself getting very close to where I was just over four years ago. It scared the crap out of me. I realized that I needed help and fast. In order to obtain this help, I started by talking to my best friend, Traci. She was amazing and just listened and encouraged me to talk to Chris. The problem was I still couldn't say out loud that I needed help. So we decided I should post on a private forum for women that have had multiple losses. Doing so gave me the courage to talk to Chris...sort of. I still couldn't say it so I emailed him what I had posted on the board.

Of course, he was amazing, as always. We decided that I would look for a support group locally and he would look into our insurance benefits. In my search I found TCF. I do not have a local chapter but they have a nightly chat online. I have attended many times and plan to continue going back. I have also made an effort to blog more regularly. These two things alone have made a huge difference. I am actually feeling more "normal" than I have in a long time. It's amazing what a difference a few years can make!