Saturday, May 2, 2009

The Journey Begins

As a parent, the words "your child has Leukemia" are some of the most fearful and painful words to accept. However, to finally have a diagnosis and treatment plan for our daughter is a terrible, but welcome relief.

Amanda has not been herself for a while. Chronic headaches, fatigue, and changes in her mood caused us concern many months back. She often looked pale and just didn't have that same energetic attitude that we normally can't even keep up with. The day after her baptism the fevers and back pain started. A few doctor's appointments sent us home assuring us it was all viral. But after two months of chronic fevers averaging every other day, we became concerned again. Despite this, doctor's just ran blood tests to pinpoint a viral infection. As a mother, my instincts began to fear something quite serious and I began hounding the doctor's office for help because the fevers got much worse (NEVER second guess your mother's instinct!). We waited for more test results that only told us she wasn't getting better. Finally, an Instacare doctor recognized how ill she was and told us to take her to the emergency room at Primary Children's, something my mothers instinct had already told me.

We have been nothing but impressed with Primary Children's. They immediately suspected cancer, but were smart enough not to scare us. Additionally, the ER doctor's noticed no signs of cancer, but did not rule it out. Five separate tests to detect cancer were negative so she was admitted to try and rule out infectious disease and just about anything else. Five days were spent waiting for tests results and dealing with a very fearful and confused little girl. We lost track of how many times she cried to go home. It was not easy. An oncology doctor finally stepped in to completely rule out cancer since everything else was a dead end. A bone marrow biopsy was done on Thursday, which confirmed Leukemia.

You already have the bad news. She has a condition that only about 2500 kids a year are diagnosed with in the US. We are looking at over two years of treatment (ideally). We are facing a health condition that will forever change our family. And overall we are very scared to watch Amanda go through this challenging process.

The better news: she has Acute Lymphocytic Leukemia (ALL). This is the most common form of Leukemia and the most treatable. In addition to this, we caught it early and it has not spread beyond her bone marrow. The combination of this puts her at an 85% to 95% recovery and long term cure rate. I keep telling the doctor that she seems too hopeful and optimistic. It's hard for us to believe that the treatment is so successful and that the cure rate is so high. But she keeps encouraging us that cancer treatment for this disorder has come a long way and that Amanda is an ideal patient to make a full recovery. We are placing our faith and hope in those that will treat her and are trying to adopt their optimism as it is hard for us to look past the fear. Because her prognosis is so good, she does not require radiation therapy (hopefully that remains the same) and her chemotherapy treatment is not as intense as that of other cancers. She also came in very healthy and is proving to be very resilient. She is adjusting to the diagnosis and learning to accept it as best she can. She also becoming increasingly brave and adjusting to hospital life better.

Amanda began Chemotherapy yesterday. I have to admit, it is not as many intense medications as I feared and the side affects look to be manageable at this point. We are currently in the "intensive treatment phase." This will last for 28 days at which time they will evaluate her progress and determine if she can go on to the next phase of Chemo. So far so good. She is tired and sick. Some hours are tougher than others as she doesn't feel good and is overly tired. But she also is giggling, playing video games, and enjoying the company of others. The good news is that most of her treatments will be outpatient unless she is not doing well. We may be home as early as Tuesday, but plan to make Primary Children's a second home.

We plan to use this blog as a way to communicate to others how she is doing and what her treatment plans are. This will help us to not have to repeat everything that is happening. It will also provide a place for people to offer support to Amanda. The happier she is, the better she will heal. And nothing makes her more happy than knowing that people love her.

Please be aware that as her treatment progress we will become more secluded. Please know that we will do whatever it takes to protect her and help her heal. Please know that there will be times that we must turn good intentions away and turn down offers for help. Although her immune system is reasonably OK now, a single illness means days at the hospital and serious risk to her. We will limit the amount of people around her for several months. For now, she can visit with healthy people, but we plan to use this blog to let people know when an email or blog comment will be much better than a visit.

What we can use are many prayers and all of you to live your life in accordance to good gospel principles. We are hopeful for her, but know that the faith and prayers of others will be both beneficial for her and for you. We are not on this journey alone and cannot do it without support.


  1. Thanks for letting us come and visit you today! We are praying for you a lot! We love you!!!!

  2. It was great to be able to visit everyone yesterday...the kids are already planning the next trip. We love you guys and will keep praying.

  3. My thoughts and prayers are with you! I appreciate your family's service and contributions to the ward. I will miss seeing you around, but totally understand the need for isolation. I know that many people in the ward fasted for your family today.

  4. We were heart broken when we heard the news yesterday, but are somewhat relieved that her prognosis is so positive!! Please know that we are thinking and praying for you (even Tyson) and offer whatever support we can. We love you guys and hopefully will see you soon.

  5. Get Well Soon. We hope you are feeling better. We are thinking about you. We will be sending you more posts later.

  6. Mary Ann, I haven't seen you or Amanda for a very long time, but I just wanted to let you know your family will be in my prayers. My heart breaks for you having to go through such a trial... but I know you are a strong and courageous woman and will do whatever it takes!
    Love, Brooke (Wily) Ibanez

  7. Amanda, my heart is aching because I miss you and because you are not very well right now. I wish I could give you a hug. I'm excited that your mom said I can come visit you. I absolutely adore you and I loved being your teacher last year. You are so strong and couragous. You are so lucky to have a wonderful family who loves you and good friends who do too.
    Love, Heather Mayhew (aka Ms. Mayhew)