Journal

Monday, April 11, 2005 12:29 AM CDT

Yes, it is me and I am actually updating this webpage. I can’t guarantee how far I will get before the “Queen of the House” comes in here wanting to go to Disney.com. That is one of her new favorite things to do. We go to the website and look at the ride simulations. She knows all of the rides, shows and parades. I don’t know if Emily will be able to wait until the fall to actually go there or not. I don’t know if I will be able to stand her waiting until the fall. Oh well, the normal things in life with an almost four-year-old can be so sweet!!!

Now, what you came here for. Emily is doing wonderfully! She is a delightful, independent and smart little girl. We have had a few instances of low counts over the last few weeks but nothing that we couldn’t deal with at home. According to our extraordinary NP Ms. Martha, that is very much to be expected in this part of treatment. And, where are we in treatment? DONE! Finished! Off Therapy!!!! Yippee!

Okay, everybody sing along with me. To the tune of “My Bologna Has A First Name”:

Our patients have the cutest S-M-I-L-Es
Out patients have the sweetest H-E-A-R-Ts
Oh, we love to see you every day
But now’s the time we get to say
Pack your bags, get out the door
You don’t get chemo any more!

Miss Emily got her final IV dose of Methotrexate last Tuesday. We had a big group of family and friends there, as well as, friends from all over the hospital. They sang the “No Mo Chemo” song to her and sprayed her with silly string and confetti. Evan got a little over zealous with the silly string in her face so Emily got somewhat unnerved. But, all in all, a great time was had by everyone. She was supposed to have her last dose of oral chemo tonight but they told me to skip it since she is scheduled to get her line out tomorrow. She continues to have occasional low glucose and nausea episodes with the 6mp and they don’t want her to have one in the morning since she will be NPO. I am still having a hard time believing that she is actually done but Emily is very excited. She wants to go to Disneyworld, the beach, Six Flags, swim, and on and on. For me, I have to figure out how to function back in the non-leukemia world but it’s a nice dilemma to be in.

We have been so blessed. Emily handled treatment beautifully with more courage and understanding than a little one should have. She taught me so much. Plus, I have come to know and love some of the most incredible and inspiring people due to this situation. I will be forever grateful to and for them. But, I am glad that my baby is done with the treatment part of the experience. Last week, we had to be at St. Jude four days in a row for a variety of tests (MRIs, CT scans, spinal tap, bone marrow, Echo, EKGs, Psych….). Emily dealt with it very patiently but I could tell she is ready to move on. And, it’s my task to let her. So I have signed her up for a Mother’s Day Out preschool program two mornings a week starting this fall. Additionally, she will be taking a Reading Readiness class this summer. She sees Evan reading and wants to join him so badly. I think that she will love it. She also wants to play soccer, basketball, karate and baseball. (Of course, that is just what she has mentioned this week.) She continues to love to dance and is looking forward to their recital in June. There is a world of possibilities open to her and I believe that she is going to take full advantage of all of them. I continue to be amazed at her zest for EVERYTHING. This experience has left me in awe of my blessings and it appears to have had a similar effect on her even though she is only three.

Evan continues to do well. He has started baseball again this year with the same coach as last. Also, he is making all A’s in school. It is the patience and love that he displays with Emily (most of the time) that make me most proud. He is the BEST big brother. You could tell how proud he was at Emily’s “No Mo Chemo” party. He told me last night that tomorrow is going to be one of his favorite days in his life because Emily is getting her line removed. Of course, this is when she is being nice to him and not shaking her finger admonishing him to “play with your sister and be nice!”

Oh yeah, the wonderful Ms. Martha that I mentioned earlier just called to let me know that Emily’s MRD results were negative. That means that no leukemia cells were found at the one in 10,000 level. Double Yippee!!

Don’t forget to check out the photo page. You will see something that you haven’t seen a lot of from Emily – hair!!!

Thanks for bearing with me and keeping us in your thoughts and prayers! Don’t forget to count your blessings. Also, if you would, please remember the other families traveling this road in your prayers. These are some really special people and unfortunately some of them are having a tough time.

Peace and God Bless!

Mikie

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Hospital Information:

St. Jude Children's Research Hospital
332 North Lauderdale
Memphis, TN 38105-2794
901-495-3300

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