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When spinal taps go wrong

This was a sweet picture of Peyton and Pete in the treatment room when she was still in a good mood!

Today was Peyton’s big day of the week for treatment. She never liked the new leg shot treatment, but she was rather resigned to the fact that she was getting “pokes” that hurt. She was excited that she had the weekend off from pokes and that was nice for us all.

This morning was her day for her spinal tap and IV medications. Everything started out fairly normal. They put in the access to her port and administered various fluids and medications, and then when it was time to do her spinal tap they gave her the normal happy medication and we went to work.

Unfortunately, the first attempt did nothing….neither did the second….they had to give her more pain medication because by this time the pain medication was wearing off, she was crying out in so much pain and fighting so much they couldn’t proceed. When the additional medication kicked in, they finally got what they wanted, but she was never pain-free, which she normally is and it was just so bad. Afterwards, she was so angry and upset, partly because of being hurt and partly because of the medication, she was just absolutely vicious. Nothing made her happy, she was spitting and hissing and slapping and biting. It was not pleasant.

They explained that when the kids have repeat spinal taps in the same spot, they can sometimes form scar tissue which makes it difficult to get the spinal fluid. They could get none from her in the first two attempts, so they had to move to a different spot and they were successful in the third. They will know to try a different spot during her next spinal so that this doesn’t happen again, which is not for at least 6 more weeks! WONDERFUL!!

Her counts were down, she’ll be receiving a red blood cell transfusion on Wednesday. It’s too late for dedicated donors for this one, but the next one we’ll have a little more notice. By the way, for red cell donations, she can have A+, A-, O+ and O-…..platelets she can have anyone’s. So, if you want to go on the donor list, contact me through the webpage and let me know.

Her ANC dropped from 1900 on Thursday to 1400 today, it’ll continue to drop, but the doctor encouraged us to take her to the American Cancer Society Cancer Families ROCKS get-together this weekend in Orlando. We get put up at the Contemporary resort for 2 nights, all our meals, and then family passes to a park for Sunday, plus they do a character breakfast and the kids are just going to be ecstatic! Peyton’s never been to Disney, so this should be so exciting for her and the kids will love to get back there. It’s a great opportunity for Peter and I to meet with other families going through the same thing we are and connect with support groups in our area. We’re eager to go and looking forward to this opportunity.

As for the rest of the week, we’ll be doing the leg stick chemo Tues, Wed and Thurs….Nathaniel and Rachael have doctor appointments on Wednesday, and both have shots due, so Peyton will get to go and watch someone else suffer….seems poetic doesn’t it? Then we have a nice long weekend away from home and having fun and we don’t go back to treatment until next Tuesday.

As we watch her body react to today’s doses of chemotherapy, we need to pray for her continued good health. For all the rough treatments and not liking her painful shots, she has so far had an amazing time of treatment. She’s had no nausea, her energy level has been good, since she came off the steroids, she’s been so happy and playful, she’s just felt good. We are so thankful for that and for the health of Nathaniel and Rachael, we cannot be take these things for granted. As her blood counts come down and her immune systems is more and more vulnerable, pray that she is able to stay clear of germs and infections and that we are able to keep her home with us and out of the hospital.

Pray for Nathaniel to continue to do well in his studies, he’s coming home with fantastic grades and getting his work done at school (which is a huge accomplishment) and just really showing his amazing brain while still managing to have a wayyyy too much fun.

Pray for Rachael to have happy days and for her to be able to cope with the changes in her life. She is such a sweet and loving girl and is having a hard time with all the adjustments she’s going through with home life, her school schedule and having to learn to grow up the right way.

Peter and I need prayer to be patient, understanding and be the kind of parents of our kids need right now, maintaining a strong family and a good relationship between the two of us.

—Anissa 😉

PS…We are still in the process of pulling together the Tupperware fundraiser for Peyton. I’ve had a lot of responses already, but if there’s anyone else who’d be willing to participate, just get a booklet and show it around and explain what we’re doing and see if anyone’s interested in ordering and contributing, it’d be great!

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