Today is Tuesday and its like 4 am. I'm up and making coffee and preparing to send off David and Jasmine on their trip. I've picked out Jasmine's clothes for the brisk morning and warm afternoon ahead. Something warm but not too warm. I had to make sure I picked out something to cover her head. Yes, it has begun.
Yesterday, David told me as I called to check in, she had been handing off clumps of hair to him to get rid of. When I got home, I saw just what he meant. I knew the day before it was shedding ever so slightly but never expected it to accelerate to such a degree. It was EVERYWHERE. The clean sheets I just put on the day before, the recliner, living room area, kitchen floor and clinging to her clothes, etc. It hurt more to see it coming out like this. It was time to do what seemed at one point the extreme. David buzzed while I held her on my lap in the bathroom. She was calm and it went well until we tried to touch up areas he had not done so well. I didn't look but just whispered in ear that she was doing awesome. As the hair came down on both of us, she just brushed it off of me. This was it. I could not believe how cool she had taken it. She felt her head and then felt David's. It didn't last long. She moped around for a little while and then she just started screaming and crying. I thought it would be easier for a girl her age. No worry about kids at school making fun, or just being self conscious. It was not either of those things but her security we took away. Jasmine loves to do two things, suck her thumb and play with her hair. She knew and we tried to distract her. I bought a pink headband with a big flower attached to it at Walmart before I came home. I was hoping the flower would be a distraction for her hands and remind those who saw her that she was a female.
When Jasmine got up this morning, she was very upset. First, it was very early and not enough time to unwind before breakfast. Secondly, she knew her favorite thing was gone. I played around with her a little bit and got her dressed, all the while pretending like nothing had changed. She is still so beautiful but I know me saying it a hundred times doesn't bring it back for her.
I gave her her meds, packed David's vital bag of info, and put her new headband on. I kissed them good bye and here I am. Too early to be up and too late to go back to sleep.
All I can think of is how I would like to be there today with them but know I have to sustain a balance between personal and work. I need my job because we need two incomes to run this household and it also acts as an escape. I get to put my mask on and pretend my day is just great. Inside I feel like just hearing the just the right word or phrase, would start my waterworks. For instance, when people ask how we are doing, I say fine. When they ask how Jasmine is, I tell them she's started chemo. I feel bad for those who have known her and knew she was sick for a while. I just don't know how to break it to them easily. Do I say, "Well we found out she has cancer and we started chemo"... crickets...."She's into her second week of chemo" followed by " we think she's strong and will do fine"....crickets. Yeah, no easy way around it. The silence is my kryptonite. Occasionally, you hear, "I'm sorry" or "I don't know what to say". She's not dead to the first comment and at least they are honest concerning the second comment. Its so awkward but doesn't have to be. Positive and supportive comments are appreciated. I've got my negative news already and I hate delivering it. Its like reopening a wound everytime. Deliver me some positive. God knows this world is in need of lots. I hope everything goes smooth today. Times up. I have to get ready for the grind.
This blog is about our story and journey down the road of our three year olds chemotherapy treatment. It will be 36 weeks and we know not what lies ahead.
About Me
- Leo8gstcancer
- Palmyra, VA, United States
- Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.
Rachel- what a strong mom you are. I love that you have started this blog, not only to share but to use it as a release. I think about you all every day and send you big hugs and lots and lots of prayers. You know I am here for you, please please utilize your support system, that is what we are all here for. Shaunna
ReplyDeletePlease know that I love you all! Thank you so much for the updates. Each of you are in my thoughts everyday! Much Love!!
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