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September 9, 2006 |
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Another great week!
Malena and Tony attended their preschool open house on Thursday. She is excited about going to school but she thinks that I am going to stay with her. We've tried to tell her she is going to school like the big kids but she doesn't want to accept that. Won't she be in for a surprise when I actually leave her. Tony will be there with her so that should make it easier. Our doctors have said that her life should be as normal as it can be which includes school. We will keep a close watch on her blood counts and when they are low we just won't send her.
 The highlight of the week was visiting Aunt Theresa and Uncle Ron's new baby! Malena predicted a girl named Caitlin and she was right! I think if they had a boy she would have still insisted that he was a girl! Malena is in love with her and refers to Caitlin as her baby.
Malena's blood counts are ok except for the hemoglobin. Anything below 8 they usually do a transfusion and she is at 7.3. The doctors are hoping it goes up on its own so we are going to wait on the tranfusion and check again on Monday. She is not exhibiting any symptoms of low hemoglobin such as fatigue or shortness of breath. If she does then we will have to have her checked before Monday. Until then she gets nothing but steaks, liver and spinach!
Two weeks left of the IV antibiotics. Her spinal fluid remains negative. We go in on Wednesday for another spinal tap and some more chemo. Over the next couple of weeks the chemo slows down and then she is in for another round of intense Chemo.
We are truly blessed with wonderful families and friends!!! Thank you for all your prayers and support!
Love, Suzanne
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September 4, 2006 |
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Malena had an AWESOME week!!!! We had friends over. We went to friends' houses. It was the most normal week of the summer!!! Now we just need to postpone school so that we can have more of that!
She has been through 1 week on the new protocol. She has received 13 doses of chemo over the past 7 days. She has to take them orally, through her mediport or in her spine through a lumbar puncture (or if you want to get technical- a unicorn running along her back?-whatever Pete says!) She only got sick once so on the days she receives Ara-C we give her zofran (an antinausea medicine) and she seems to be fine. Hopefully it will continue this way but we have heard it builds up in her system so one week may be totally different then the next. Her hair continues to shed but she still has it!
Tomorrow we start all over with the spinal tap and lumbar puncture at Children's Hospital thus beginning another full week of chemo.
As I type this she is dancing around in the living room to songs on the iPod with Tony!
She is happy! So we are happy!
Love, Suzanne
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August 28, Monday, 2006 |
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Got results today and it appears the Meningitis is on its way out!!!! That is GREAT news and they were able to start the chemo therapy today. (full boat, in the spine too) So we should all be very pleased that we finally have some good news to celebrate!
We will continue to give her antibiotics 7x a day for 4 more weeks to make sure the Meningitis doesn't rally, but I am glad to see her back on chemo. (? that doesn't sound quite right)
No trip to Childrens would be complete for Malena without a little more drama. 5 weeks after her mediport surgery she seems to have a small infection at the incision site, after beating them over the head the surgeons finally came to look at 8:30pm and said she had an infected stitch or a tapeworm or something (I wasn't really listening when Suzanne called to tell me because Prison Break was on, and that Wentworth Miller is SO cute.)
So they threw another antibiotic into the mix (that makes like 31) and ordered a mediport culture (that makes 962). At this point her blood must be 99.6% drugs with a little dash of actual blood for color (or possibly blood extract, ladies, I find imitiation blood extract works JUST as well).
With all of Malena's drugs, tests, procedures and weight gain; I can not help but be reminded of 1978's Issue #31, "The Origin of The Hulk". (I almost said "Swampthing" but I figure when Malena is a teenager and looks back on transcripts of this website, while lounging in her 28yr old boyfriends apartment in the city, she may take offense at the comparison and make my life miserable with additional piercings and whatnot.)
But right now, she is my cute little Babydoll who, upon waking, sent the nurse out of Surgery Recovery to get me, her dad, because she wanted to hold my hand.
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