Today's clinic visit consisted of the following:
1) Port access
2) a blood draw
3) Vincristine (Chemo)
The most noteworthy point from today's appointment is that Kaitlyn's next (AND FINAL) lumbar puncture and bone marrow aspirate will be in 3 weeks...July 8th. Dr. Keuker has opted to do this procedure 3 weeks ahead of schedule so that Kaitlyn can have her cavity filled on July 26th. If we kept her lumbar puncture on the originally scheduled date, she would have her cavity filled on the 26th and a lumbar puncture on the 29th..I just couldn't do ALL of that to her in one week. Dr. Keuker felt that it was important for her to keep the appointment with the dentist to have her cavity filled because of the risks associated with not filling the cavity (abscess/infection) and he offered to move her LP. At first, I was adamant that we would NOT move her treatment schedule around to fill a cavity. But, then he explained to me the risks of not filling the cavity as soon as possible. So, there it is...are you prepared for the final bone marrow test? I am scared to death of the results. I shouldn't be I suppose, I have no reason to be, but I am. The 'what if's' are running around crazy in my head. I am trying my best to remind myself of how far she has come, how well she has responded to the treatment and how well she is doing now. But, the fear is there. I will be relieved to have those 2 things behind us though.
1) Port access
2) a blood draw
3) Vincristine (Chemo)
The most noteworthy point from today's appointment is that Kaitlyn's next (AND FINAL) lumbar puncture and bone marrow aspirate will be in 3 weeks...July 8th. Dr. Keuker has opted to do this procedure 3 weeks ahead of schedule so that Kaitlyn can have her cavity filled on July 26th. If we kept her lumbar puncture on the originally scheduled date, she would have her cavity filled on the 26th and a lumbar puncture on the 29th..I just couldn't do ALL of that to her in one week. Dr. Keuker felt that it was important for her to keep the appointment with the dentist to have her cavity filled because of the risks associated with not filling the cavity (abscess/infection) and he offered to move her LP. At first, I was adamant that we would NOT move her treatment schedule around to fill a cavity. But, then he explained to me the risks of not filling the cavity as soon as possible. So, there it is...are you prepared for the final bone marrow test? I am scared to death of the results. I shouldn't be I suppose, I have no reason to be, but I am. The 'what if's' are running around crazy in my head. I am trying my best to remind myself of how far she has come, how well she has responded to the treatment and how well she is doing now. But, the fear is there. I will be relieved to have those 2 things behind us though.
I can't believe we are almost done with this nightmare. When she was first diagnosed, I remember thinking that I just wanted to get through with all of it and resume my "normal" life. But, I don't know what that is anymore. In some respects, I feel like I have gone to war and I am getting ready to return "home". But, I am no longer the same person as before and I have emotional scars that need time to heal. Now that we are coming to the end of treatment for Katie, I feel like I can finally start to process what I have gone through over the past 2 & 1/2 years as her mom. I have been through a trauma of my own. I feel bitter when people talk about their kids getting a haircut because Katie is 4 & 1/2 years old and has yet to have one. Or when I hear how many great social activities other kids are involved in, I feel like we missed out on so much because we were shut in during the winters in order to keep Katie healthy. I have resentments toward the disease for that and much more. I know I should be rejoicing in the fact that Katie is doing so well (and I am, believe me), but part of me is still very, very sad.
I have heard it described in the following way, " It's sorta like being on a crazy roller coaster ride - the ride comes to a stop, but you are left sitting in the front row sorta in shock. You watch others zipping along, but your life just doesn't quite "zip" the way it used to anymore." This is a perfect metaphor for how I am feeling these days.
I wish no other parent had to feel what I have been feeling lately, but I know there are so many....too many...who do. It sickens me to think of how many children are suffering every day with this horrible disease. I pray every night for a cure & for the strength to keep fighting side by side with my little girl.
This cycle will consist of the following:
Vincristine - Day 1 (same dose as previous cycles)
Methotrexate (oral at home chemo) - Days 1, 8 & 15 (increased dose from the last cycle)
6-mercapturine (oral at home chemo) - Days 1-14 (same dose as the last cycle)
Dexamethasone (oral at home steroid)- Days 1-5 (same dose as the last cycle)
Next planned clinic visit will be in three weeks, July 8th, which will include her final lumbar puncture and a bone marrow test. Please say a special prayer that Katie's bone marrow test results come back "all clear".
ONLY 5 MORE
CHEMO VISITS LEFT!!!!!!!!!!!!!!
1 comment:
Amy, I can't even begin to understand fully what these past 2 years have been like for you, but I understand a little about feeling gypped on life. When I was in HS, my father was diagonsed with Lou Gehrig's disease. While my friends went on dates, hung out together and enjoyed being a teenager, I was sitting in a hospital room visiting my dad worrying about what life would bring next. I got a job to help pay for my own things like clothes. And I remember feeling how much all my friends took for granted, and when they would "whine" about seemingly unimportant things, it would make me angry and bitter. I would think, "Gee whiz that's YOUR biggest problem, well, lucky you." And so I distanced myself from my peers b/c they just couldn't relate to me at all. And it was lonely. But that was the path they were on, they had their own "trials" in their eyes as we all do. And those wounds DO run deep, and DO make you a completely different person. But you have a strength now, that few possess.
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