Home & Happy

After a week of negative blood cultures Anya was discharged from the hospital last night (Thursday) just before bedtime. It was so wonderful to see her walk into the house on her own two feet, smiling and hugging her grandparents. She is VERY happy to be home. She is playing with Esther, laughing, opening presents that people have sent and enjoying a small stretch of time where she is not on any medication. We are cherishing these moments as well as we know that it will not last forever.
As Anna explained in a previous post we completed the first phase of treatment (Induction) but the second phase (Consolidation) was postponed because of the bacterial and viral infections that landed Anya back in the hospital for the past week and a half. Now that both infections are cleared up we are just waiting for Anya's blood levels to get up within the parameters to begin the Consolidation phase. On Monday we go to the clinic for a blood draw. If all is well we'll go back in Tuesday to spend the night for Anya to get a spinal tap and recieve chemo through the IV.
Anya will recieve heavy doses of chemo and multiple spinal taps in the next two months, however she won't recieve steroids. She will spend a lot of time at the clinic and some nights in the hospital as she recieves the chemo and will have to have her port accessed multiple times for various procedures. This is very frightening for Anya because to access the port they push a large needle into her chest and then tape a contraption onto her chest that they can draw blood and give medicine through. Anya hates having this contraption put onto her, but once it is she becomes very attached and freaks out when the time comes to remove it. Although she had become very comfortable with the nurses during this last hospital stay the removal of the exterior port access was very traumatic for her. In addition to Anya not liking the various procedures she will be less energetic and much more susceptible to sickness the next few months as the chemo does its work. We are curious to see how she will react emotionally without the steroids. Even now, while she is off the meds and happy most of the time she is still emotionally fragile, has her feelings hurt easily, lonely if not given constant attention, self-conscious about her physical appearance, and very protective of the various parts of her body that were poked and prodded during this last hospital visit.
Of course we appreciate and covet your prayers for Anya's complete healing. We also would appreciate your prayers for Anya to continue to grow in confidence and comfort with the doctors and nurses and the various procedures they perform. Most of them are not painful, but many of them frighten her and naturally she does not enjoy being couped up in a hospital bed. We also need your prayers that Anya would not get another infection. Anytime she gets a fever, cough, etc. she has to go to the hospital and the cancer treatment is put on hold until the infection is completely gone. They have told us that if she gets another infection in the port they will be forced to remove it. These delays in treatment are very difficult for all of us and prolong our time away from home (Kansas City) and the time of Anya's recovery.
Thank you again for all of the gifts, cards, and support you have sent us throughout this ordeal. While Anya was on the steroids she was so emotionally distraught that she was hardly ever interested in playing with the growing stack of toys in her room. Now that she is home and happy she is starting to open presents and get very excited to play with all of the neat stuff she has recieved. It means so much to us to see her happy and we thank you for the part you've played in bringing joy to this little girl's heart. In the next few days we'll try to post some pics of Anya playing and laughing with her siblings. We love and appreciate you all.