I’m so glad that Kennedy was able to enjoy one good week-free of chemo and oral meds. Yesterday was probably one of her worst days so far. After bustling like crazy to get to day treatment by 8:00 am, they told me my appointment wasn’t until Tuesday! I said, “WHAT???” Both Dr. Olson and the clinic confirmed that if she wasn’t coming back on Thursday, then she was to be in day treatment on Monday. They called the clinic and managed to work it out. From there, it only got worse. All last week Kennedy was telling everyone how she was getting much better at having her port accessed only to have it go horribly wrong yesterday. Rather than have Nellie or Libby do it, they had another nurse who had problems. She put the needle in (traumatic in and of itself), it was wrong so she pulled it out and did it again, it too was wrong so out it came again and back in. By this time Kennedy is hysterical and screaming and I’m crying and feeling very sick. One nurse went to get Libby and I handed Kennedy off to the other nurse so I wouldn’t be sick on her. Libby came in and adjusted the port to make it work without having to poke Kennedy but the damage was already done. They hooked her up to her fluids and she began to calm down. She suggested we play Chutes & Ladders, which was fine, but I couldn’t sit on the floor. Rather than play on the couch, Kennedy flew into another rage; only this one lasted 45 minutes! To make matters worse, we were not in a private room but in the bigger “rec” room with other families. Finally she agreed to play it on the couch if she could sit in my lap. On top of her being mad, I had to coerce her to drink, even though she was getting fluids, because she was too dehydrated to begin her chemo. She was trying to hold on to what little control she had and dug in that she would not drink what we were offering nor go to the bathroom so they could test her urine for hydration! AAAAHHHH! About 1:30 she was finally hydrated enough to hook up only by now she had had one more raging temper tantrum because I forgot the Handi-Snacks cheese and crackers she likes! I ended up buying 12 pieces of bacon for $6.00 so she would eat something. They turned on her chemo and she begins to play dress-up with a little girl waiting to have her bone marrow tested to see if she can donate to her sister, when ten minutes into it I start noticing that there is blood creeping up her line. I knew this couldn’t be good and got a nurse who unhooked her and tried to flush the line. She was able to flush and get a return (blood back into the syringe) but when she flushed again it would not budge. They kept trying but the fluid began shooting out of the other hub. Apparently a small clot was in her port and they suctioned it into the needle. I thought, “What else could go wrong today???” They had to add TPA(?) to dissolve the clot and we had 45 minutes to go get lunch since she would be unhooked. Kennedy picked Cheetos and water…mmmm, nutricious. She was hooked up and everything appeared to be fine. After the chemo was administered, she still had to have at least 3 hours of more pushed fluids through her IV and had to use the bathroom. Here we go again! She drank all of her water and we were able to leave at 6:45 pm. What a long day! Normally they would leave her tubing to her port in for the 4 days she gets chemo but because it clearly was not in their correctly (hence all the problems) they thought it would be best to remove it. Again, Kennedy flew into a rage and began kicking and screaming that “everytime they want to hurt her!!” and “why are they always hurting her???” They removed it and it was a mess from being poked so much earlier. She was exhausted and after hitting a Taco Bell drive through, she napped all the way home. The only thing she had to say was that she wanted someone else’s child to be sick instead of her and she was NEVER going back to the hospital again…EVER!!!!

Everyone (the Drs., other parents, etc.) told us that the port was better, kids get used to it and it is easier after the first 4-6 weeks; I’m not so sure about that! Today we had to go back to the clinic so she could be accessed and get her Ara-C. She started screaming the minute she realized what was going to happen. And screamed, and screamed, and screamed! It took two nurses just to hold her down. Once it was in it was fine but the anxiety was horrific! Apparently the port has “moved” and is now tilted back. Sam (the nurse) just held it with her fingers and accessed it with no problem. The nurse in day treatment didn’t check its position, she just put the needle in. No wonder there was a problem! She stayed mad while they were taping it but was no longer screaming and would not talk to Dr. Norwood when we saw him in the hall. I would have to agree with Kennedy, I wish someone else’s kid was sick…not mine and I don’t ever want to go to the hospital again!

Oh, and on top of all this…OHP does not think that Kennedy needs the Lidocaine to numb her port area before it is accessed and is refusing to pay for it! Are they kidding me????? How insensitive! Thankfully, Kennedy’s fund is able to cover these kinds of expenses.

Ok, now that I’ve had my vent. I have decided that I must find one good thing everyday to keep my sanity. Here it is: Today the sun is shining and we are not inpatient.

Please pray for Kennedy. It worries me that she does not think any of this is worth it. I love her fiesty spirit and I pray for strength and determination for her. And please pray for me-I am so angry right now that it is overflowing into my life. Please pray for the peace that passes all understanding.

Melenie