This adorable two year old has lost her hair, her ability to speak and walk, and is beginning to lose her eye sight as well. She has had extensive chemotherapy, 28 radiation treatments, blood transfusions, and countless other procedures. Last week, Maddie had routine scans. They showed that a new tumor had grown in her brain; she has relapsed with three months left in her original treatment plan. Madison will begin a new protocol for relapse in a couple of weeks.

You can keep up with Madison by visiting her blog.

The scan revealed a brain tumor and Bo was immediately airlifted to Children’s Hospital in Atlanta. Bo went into surgery to have an EVD (External Ventricular Drain) placed to relieve the pressure in his brain caused by the increased fluid. On August 26, 2009, the neurosurgeon removed 99% of the tumor in Bo’s brain. The small amount of tumor that remained was attached to his brainstem. Bo was diagnosed with Medulloblastoma, an aggressive stage IV cancer. After surgery, Bo developed Posterior Fossa Syndrome leaving the left side of his face paralyzed. He also had mutism and the inability to control any body movements. Bo underwent six rounds of intense, high-dose chemotherapy over the next eight months. He was able to go home on maintenance chemo in May 2010. In October of 2010, Bo was diagnosed provisional autism, apraxia, aphasia, and dysarthia. He receives occupational, physical, speech, behavioral, communication, and equine therapies.

Scans in February of 2011 showed that a new tumor had grown on Bo’s cerebellum. He had a second brain surgery to remove the new tumor. During a surgery to place pins in Bo’s head, an MRI showed that the tumor had returned. On April 26th, another MRI showed that the tumor has doubled in size and has metastasized in two places on Bo’s spine.

Bo is scheduled to begin radiation treatments on May 2nd. You can follow his journey here.

Layla was a happy, energetic baby who was full of personality. Over the course of 11 months of treatment, we watched her spirit decrease and her physical body slowly get worse and worse. She stopped eating because she was afraid she would throw up. Every time she ate she would get sick, and she got to the point where she would only eat pizza. The pepperoni would mask the metal taste that the chemo had caused. She stopped walking and crawling because her bones hurt so bad. She never slept well because we were constantly waking her up in the night to give her more medicine. She eventually stopped talking about a month before she passed, and it was around that same time that she no longer wanted to be held…she was just in too much pain. I would cry as I changed her diaper and clothes because every time I moved her, she cried out in pain. It was torture for her.

One of the hardest things I’ve ever had to do is pray for God to take my child. The other is hold her as she took her last breaths. Then clean her up, change her clothes and hold my dead child as I waited for a big black SUV to come and take her away from me forever. The moment she died was such a mix of emotions for me. Part of me was relieved that she was no longer in pain. Part of me was disgusted with myself that I had asked God to take her. Part of me was terrified, trying to figure out how I would go on living. Part of my heart had just been ripped away, and a huge part of me was just plain angry. She had her whole life ahead of her. How did God let this happen? Why did he choose my baby? I understand that he has a plan and everything happens for a reason. I see the impact she had on so many people…and for that I’m grateful. What I’ll never understand is why she had to suffer the way she did. I guess it’s not for me to understand… Ecclesiastes 11:5 says “As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God, maker of all things.”

Layla was a surprise blessing. Claire was only 2 months old when I found out I was pregnant with Layla. I cried and cried, worried that I wouldn’t be able to bond with Claire if I was pregnant and sick all the time, and how would I handle 2 babies only 1 year apart?! After she was born, she fell right in step with the family and was the best baby I could have asked for. Any reservations I had were quickly put aside. Granted, it’s really hard to get out of the house with 2 babies, but it’s like she knew and was trying to make it as easy as possible for me. Which was so nice because Claire was just the opposite LOL. The 16 months we had with Layla before she got sick is a time I’ll cherish for my whole life. My family felt complete…whole.

Now, one year later, I still feel such mixed emotions. I don’t think it ever gets easier, you just figure out how to manage your emotions better. I still cry every time I hear “I Can Only Imagine”, which was beautifully sang at her celebration of life. A good friend told me to choose my music carefully because it will bring back those memories every time I hear those songs. Like a dummy, I chose songs that I hear all the time. Standing in the middle of Hobby Lobby, hysterically crying like a baby because they’re playing a certain song wasn’t one of my better moments. I still tear up every day about something…I made pancakes a few mornings ago and started crying because I used to take pancakes to the hospital for Layla’s morning appointments. I’d take Pancakes in a baggie, and put syrup in a syringe (without the needle of course). Layla would hold her pancake and I’d squirt syrup on each bite. So if I run into you somewhere, and I look happy…I probably am happy at that moment. But that doesn’t mean I won’t be crying in a few minutes.

So how are we doing? We’re living day to day and doing okay. The girls are doing well and although they still ask a lot of very difficult questions, they’re coping well. Ryan and I are slowly learning how to live with a “new normal”. Our world was turned upside down for so long, it’s kind of scary learning how to live again….but much differently. We went though months of counseling, which I would recommend to anyone who has experienced the death of a child, and are learning how to balance the loss of Layla and the life of our other two precious children. It’s very hard to grieve for a child when there are two others who still need you just as much…if not more than before. It can be quite overwhelming. I think we’re doing an okay job.

I’d like to thank everyone who has poured out their prayers and support during the last 2 years. I know many of you might not have gotten a personal response from me, but please know that your emails, letters, messages, voice mails, etc were all heard, read and greatly appreciated. I love reading about how Layla changed a life. After all, that’s what God put her on earth for…to change lives and make a difference. I can only pray that in my lifetime, I make a fraction of the impact she did in her 2 short years.