UPDATE ON MADDIE

Yesterday was the day that Brandon moved to Quantico and our fun family time together came to a close. So he will be driving a ton and hopefully we will do some too to help alleviate the burden on him, and so we can see our new home. Today the movers are delivering our stuff, so wish him luck.

Maddie, my sister Kathryn, my mom and I had a very pleasant lunch yesterday at California Pizza Kitchen at Southpark. Maddie not only sat in her high chair (that rarely happens) but she even ate quite a bit of solid food (other than chips). So it seems her appetite is coming back. I had called the clinic on our way to see if we had any lab results back from either the Parvo test or her MLL gene test, which tests to see if there is any lingering leukemia in her bone marrow. While at lunch, I missed a call from our nurse Kristen. When I called her back she said that the Genetics Lab had a preliminary report on Maddie’s MLL test and that they were faxing it over. She said either she or Dr. McMahon would call when they got it. That scared the living daylights out of me for a number of reasons. Anytime she says the doc may call, that means bad news that she cannot give me herself. Also, these genetic results have taken 2 to 3 weeks to get back to us each time. The only time we have gotten a result in 9 days is when she was first diagnosed and the result was positive for cloned leukemia in her marrow. So I am freaking out as we drive home from the mall, making mental plans as to what things I will need to take with us to the hospital. Thinking I will have to tell Brandon to turn around and drive straight back. Any of you who know me know how crazy I can be, and days when we are getting test results are not good in our house. I try very hard to remind myself that worrying does not help anyone, and that I cannot change the outcome of any of this. Unfortunately, my head just doesn’t always get that.

So we get home and I get her down for a nap, all the while thinking that it has been forever since I talked to the nurse and so something must really be wrong because otherwise they would have called by now. Anytime we have to wait long, I dream up scenarios about how our oncologist is mentally preparing himself for the speech he will have to give us. It has been over an hour (to receive a fax?) and I call again to check and she doesn’t answer. I also know Kristen knows my number when she sees it on caller ID, and the fact that she doesn’t further reinforces my fears that they are avoiding talking to me because something is wrong.

Just as I have looked up old results in my book of her labwork, and seen that there was a time where the result came back in 9 days (and the result was good), my phone rings. Kristen let me know that the result was normal. There was no evidence of MLL rearranged leukemia in her marrow. I have even gotten my fax with the results to file away in my book and they look just like the last ones.

So now that you all know how mentally deranged I am, we can celebrate the fact that Maddie was officially in remission July 14th when she had her Bone Marrow Aspirate done! While I believe strongly that she is going to survive this, I sometimes need medical data to reinforce it. There are many other parents who believe in God, who pray fervently for their children every waking moment, and who believe that God has a special plan for their child. All of the children that I know who have had this disease are loved and cherished by their families and friends. Many have powerful circles of prayer that speak to God on their behalf daily. But almost half die anyway. This disease is incredibly cruel. Please pray for a cure so that no child has to go through this!

Love to everyone,
Liz, Maddie, and Brandon

I just want to clarify some things I have said earlier today on this page. Despite my questioning whether or not my daughter will come through this, I am not in any way questioning my faith. On the contrary, my faith is stronger than it has ever been. I just know that God’s plans for my baby may not be the same as MY plans for my beautiful girl. I would love to think that His plans line up with mine, but I cannot say that His plans have been revealed to me as of yet. My precious daughter and this experience has taught me so much, and I certainly will appreciate every moment of my life in a much more real way than I ever could have without going through this.

Some of the most faithful people I have met along this journey so far have lost their children to cancer. They too believe in all of the same things I do, but nonetheless, they are left grieving and hoping they can come to terms with their loss. There are certainly times where I question the fairness of making a completely innocent baby go through this, but I just try to squash those thoughts and remain focused.

I just want to clarify that I am not doubting my faith. I just know that I do not get to make this choice, and unfortunately, we have a long way to go before we get to know the end result of this. My goal along the way is to enjoy every moment with Madeline and do everything I can to make every moment of her life full of joy.

If you notice that the tone of my updates have changed a little bit lately, it is because of the place where we are in treatment. We are into the part of her treatment where relapse is most likely. This means that for the next nine months to a year(sort of a make believe cutoff date I have in my head), Maddie’s chance of relapse is the highest it will ever be. Her chances of surviving a relapse are basically in the single digits. So every time we have her blood checked, the results are basically life and death to me. I try to confine my worrying to the period of time between when they take the blood and when they give me the results (30 min to 2 hours). So yesterday’s marrow result worrying was a little more than usual, but only because the nurse warned me I was about to get a result. I truly try to leave all of it out of my mind when I am with my baby the rest of each week. As soon as we pull up to the clinic to get her counts checked I get sick to my stomach with the worry, but it only lasts until we get her results. I know worrying is completely unproductive, but since I am a worrywart by nature and always have been, I feel I should be allowed to worry for at least that small portion of my week.
Sorry I am so darned long winded,
Liz