We have made it through the week and actually done very well. With the exception of getting up at 4am everyday, we have cruised through it and gotten a lot more comfortable with the idea. Is it still scary? Yes, but now it is managable.
Kennedy, as you know, had counts check on Monday and barely passed in regards to her platelets. On Tuesday she had radiation and because of some x-rays and stuff that needed to be done it took about 4o minutes. We had a little time to kill before we had to be at Day Treatment, so Kennedy and I made the rounds and did a little visiting. We then headed over to DT and had more counts drawn. Kennedy’s platelets had dropped slightly to 78 (75 was passing) and her ANC was now down near 1300. Still in the passing range but already getting lower. Her red count however, was in the critical range so that meant a blood transfusion. They started her fluids for her Cyclophosphamide and we waited to have her LP. As usual, she did well and they ran her recovery fluids along with her red cells and we were able to leave about 4pm. That sure makes for a long day. We went straight from there to the Papa’s Pizza fundraiser!
What an incredible turnout!! There were so many people! Not just family either, but friends of family both through church or work, nurses (who are like family) and so many people we love and care about. Kennedy was at her best and was excited to see people and play with other kids. I do not have a final count but I need to update the fundraiser information anyway so it’s a good excuse to get on that. We were exhausted when we finally crashed at home around 10pm. What a great day though!
Wednesday more radiation and to the clinic for Ara-C. I also had a doctor’s appointment to figure out what the problem is with my ear. We’re still not sure but the ear drum was retracted and showed signs of fluxuating pressure so she gave me some meds to keep it draining properly and we’ll see how that works out.
Thursday, more radiation and back to the clinic for Ara-C. These are all short appointments really but because they are 5 hours apart it can make for a crazy day. It is a good excuse to hang out with my sissy and her babies though. I also had conferences for Austin at 3pm. He did excellent (especially considering how much school he has missed and the tremendous stress he is under). He received 18 A’s and 7 B’s. He freaked! Keith and I were very happy but he was crying because he wanted more A’s. I told him how proud we were and how many wonderful things his teacher had to say about him but it matters most what HE thinks. I’m not sure yet that he is convinced of how well he did.
Yesterday, more radiation and a meeting with radiation oncologist. We were originally told that she would have 14 days of radiation (now, to tumor families I realize that does not seem like very much, but when you are zapping the whole brain, back of the eye cavity, ears and thyroid-mostly healthy cells-anything is a lot) but after talking with oncology team and reviewing protocol, she only needs 8 days of radiation! We are half way there!!! They were asking me a bunch of questions such as whether or not she was tired, eating less, having vision or hearing problems, unsteady, etc. and while this was sort of helpful, many of these she has had for awhile or would have problems articulating so I’m not sure I was much help. As far as Kennedy’s spirit, she is doing remarkably well. She is no longer focusing on the possiblity of dying but would rather talk about the plans she has for the future, such as ballet in the fall, being a teenager, having a horse and growing up to be a mommy. She loves to talk about her plans for her hair (having lost it 3 times!) and wants to grow it long and have me put it up and lots of different ways. That is amazing since she could hardly stand to let me brush her chin length hair before! The first few days of radiation were hard for me. It was very disheartening to carry my sleepy girl in a room with so many warning signs, lay her on the table, see her sedated and restrained and that mask fit tightly over her face…and then walk out and leave her. All of my mothering instincts were screaming in my head to gather her in my arms and run as far away as I could, back to before she was sick. It is extremely difficult to hear all that oncologists have to say about the many different treatments and then to sign your consent to allow them access to your most precious gift. However, I get through it by remembering the dragon that wants to devour her and that these are the weapons of destruction that are necessary to be rid of it forever. True, these weapons could be swung at the innocent bystander but scars will heal better than broken hearts. She is an amazing princess warrior who has grown into her name and she is determined to move forward and claim her healing. And please remember this Easter weekend, that while bunnies and eggs are fun, it is our savior who overcame the most destructive dragon of all…death…so that we could triumph too and rest easy in his arms when our journey here is through. Jesus is our inspiration and strength for fighting and He is the PERFECT example of overcoming all odds!
Often people attempt to live their lives backwards; they try to have more things, or more money, in order to do more of what they want, so they will be happier. The way it actually works is the reverse. You must first be who you really are, then do what you need to do, in order to have what you want. ~Margaret Young
Happiness is a form of courage. ~Holbrook Jackson
Feeling absolutely blessed this Easter and rejoicing in our greatest gifts,
Melenie
