Devastation

I'm going to forget the apologies I owe you for not being here in so long. The long explanation of why I was unable to post will have to wait for another day. My usual humor and self deprecation will be absent today. The news I am here to share with you is devastating beyond words. But you, Lois's cheerleaders and champions, deserve to know the details of what has befallen our family.

Lois came through her 6 treatments like a total champ. Her goofy grin remained the entire time they pumped her full of poison. She never uttered a peep when they stuck that needle in her chest to access her port - in fact, she took great pleasure in administering saline flushes and sometimes even Propofol to herself. She was labeled as "the happiest kid in the hospital" on more than one occasion. And she made the entire experience easy on us. We followed her lead, and with every step she let us know she was going to be OK.

Two weeks after her final treatment she developed a bacterial infection on her skin. Her immune system was tanked - 0 neutrophils - so the fear was this infection would travel to her blood stream. It never did. She sat in the hospital watching Elmo for a couple of days while they gave her gallons of antibiotics, and on day three she was deemed healed enough to go home. But that day's blood work showed blast cells in her blood.

Blast cells. They are what got us into this mess. They were a sign of a possible relapse. But there was an alternative explanation that made sense - immature red blood cells that her marrow pushed out too early because it was - for lack of a better term - freaking out that there was an infection in her body and nothing to fight it. We spent the weekend (because OF COURSE this happened on a Friday afternoon) worrying that we were going to jump right back into this soul sucking world of pediatric cancer.

A bone marrow aspiration the following Tuesday initially showed nothing but healthy cells. We were sent home with a clean bill of health. The next day the marrow biopsy returned with nothing but healthy cells. Congratulations Hogan family. Your child is cancer free. You are cleared to resume your normal life. And so we did.

Lois's portrait was included in a display of children fighting cancer at the Richmond oncology clinic. We celebrated with our friends and family at the Children's Museum of Richmond along with the other local "heroes" and their friends and family. The place was packed with extra chromosomes that night. It had been so long since we'd seen so many of our friends. It felt like a party just for us - a welcome back to the real world party.

The next day Lois returned to preschool - a place she loved and had to give up when she was initially diagnosed in January. Mac joined her. And Momma? Well Momma had her first taste of real freedom in 3 years. I felt so good - that it was only then that I realized just how crappy I had felt for months. It's like someone finally opened the windows and let the sunshine in.

But each day I noticed more petichiae on Lois's face. (Broken blood vessels under the skin - a sign of low platelets - and what got her diagnosed initially) I told myself it was just from the crying she was doing at school. But then I noticed them on other parts of her body. Then I saw bruises. And I couldn't ignore the situation anymore. She had an appointment for an echo downtown on Monday afternoon, so I popped into the clinic afterward to have her blood tested.

The minute sweet Dr. S walked into the room I knew my two weeks of sunshine were over. Lois had 20,000 platelets. Normal levels are several hundred thousand. She needed a transfusion. Although it was possible a virus could be causing the situation, Dr. S and I both knew we weren't dealing with a virus. She left the room crying.

I took Lois home with an appointment for the following day for another bone marrow aspiration. Ten minutes after I got home, our doctor, Dr. M called. Lois's bone marrow test from two weeks prior had three parts - the first two parts reported only normal cells. The third part? Those results finally were returned to Dr. M last Friday afternoon - and they showed the return of the chromosmal abnormality in Lois's marrow that caused this whole situation in January. She relapsed. The treatment didn't work. And now whatever cell in her body that is causing the cancer is resistant to the chemo drugs we used. Dr. M didn't want to ruin our weekend. I love her for that. She came to the clinic that day - on her day off - to call us with the news. It just so happened, Lois and I and her measely 20,000 platelets beat her there.

So yesterday we returned to the clinic for yet another bone marrow aspiration. Once again, there are three different results. The first part indicates Lois has relapsed with MDS (myelodysplastic syndrome) again. Our worst fear is that the MDS has progressed to AML. Lois's chances of surviving AML are minimal. We have to wait for the second and third part's of the test to be sure, but right now it looks like we are still dealing with MDS. The interesting thing is, Dr. M can't find a documented case of this happening to another child in the US. Ever. Children with DS with MDS have a less than 5% chance of relapsing. And the ones who do relapse usually progress to AML. But not my girl. She has NEVER, EVER since the day she was born followed convention. Her first teeth were her molars. She likes to bend the rules on their ears. And she's done it yet again.

The Children's Oncology Group - the physicians like Dr. M who treat children with cancer and conduct research on the morphology of children's cancers - are currently meeting in Dallas, TX. There is a small cohort within the COG who are considered experts on treating children with DS who have cancer. They are meeting this morning. And guess who they are going to be talking about? Our Dr. M sent a summary of Lois's treatment to the nation's leading researcher on DS and leukemia who just happens to be at the conference this week - and he agreed to discuss her case in the DS cohort meeting this morning and gather opinions on treatment. Dr. M tells us she doesn't want to treat Lois like a guinea pig - but considering we can't find documented evidence of another child in this situation, I think she is one. Our hope is that one of the doctors at that meeting today will haveencountered a similar situation and be able to shed some light on our case.

What we do know is that Lois's problem is with her stem cells. And there's really no way to treat a stem cell condition unless you get rid of those stem cells and give her new ones. And that means a bone marrow transplant. We have to treat Lois with some new chemo drug at a low enough dose that it doesn't damage her other organs and tissues, but a high enough dose that it kills the cancer cells and corrects the chromosomal abnormality in her marrow. She needs to achieve a remission again before a transplant is even possible. Children with DS are so successful at beating leukemia because their cells are very suspetible to chemo. That's great news on the first go round when you are using a studied dose and are confident you are killing cancer cells and nothing else. But in Lois's case, we are kind of off the map. Dr. M sent a portion of Lois's bone marrow to a lab in Minnesota where a researcher will study it and determine which drugs will be less toxic to Lois. But time is of the essence.

If she can get back into remission, she'll need a bone marrow match. Thanks to Dr. Meck, we have Mac's cord blood banked. But there is only a 35% chance they will be a match. Jay and I will be tested, too. But if none of us are matches, we will have to look for a match in the marrow registry or the cord blood bank. If a match is found, they give Lois enough chemo to kill her own marrow (hopefully without killing her heart) and then replace it with the donor's marrow. There are a million things that ccould go wrong from there. But it could also save her life.

I don't know the odds that a match for Lois will be found. But I know that Lois isn't the only child in this situation right now. And it's possible that YOUR bone marrow could save the life of a child like Lois. So I encourage you to visit www.marrow.org and add yourself to the National Bone Marrow Registry. My friend Dustin did that today and sent this photo via email with a love note for my girl:

So I know this post contains a lot of "ifs." But at this point we are forced to hang on to the possibility that she can get to remission, her brother will be a match, and she can survive the ordeal of growing new bone marrow. If anyone can, I believe it is my spunky, funny, quirky, happy little butter bean.

Today I will take Mac to preschool, take Lois with me to see my doctor for a check up, return home and finish the laundry and make dinner. Yes folks, when someone tells you your daughter has a 50% of surviving the next year, you still have to do the laundry. Strange, but true. And Jay and I have decided that this is the only way we can deal with something so big and scary. We must take each day as it comes and allow Lois to show us the way, yet again. Today Lois looks like the picture of health. She's sitting beside me happily watching Sesame Street and habitually asking for crackers. And so today, I will enjoy that smiling face and give her as many crackers as she can eat. I don't know what tomorrow will hold, but we will face it with courage and a determination to see Lois safely through the dark journey that lies ahead.

We are so thankful you are here for us, and for Lois. Your emails, phone calls, facebook comments, and offers of help are testament to our little girl's magic. For right now, we are just fine, albeit emotionally fragile. Our strength and resolve grows with each day, but rest assured, that if and when we need you, we will ask. And we rest easy knowing you will be there.

Please remember that I don't like talking on the phone on a good day. Today isn't a good day, friends and I just don't feel emotionally able to talk yet. My sweet, sweet friends who have called and gotten my voice mail (sometimes more than once) please forgive me and try to understand.

Hug your children a little tighter tonight. You know we will be doing the same.

I promise. I vow. I WILL be here to keep you updated.