Sunday, March 28, 2010

Catch Up

I have returned from a much needed mental and emotional break. While it was nice to have a break from my blogging "obsession" I now have a lot of catching up to do. I will start from this moment and backtrack. It may take me a few days to get all of it in but we will get there! Spencer will be in patient once again on Wednesday for his more chemo. This is where things are going to get intense (because they haven't been already). The chemoes he has been taking have been "mild" comparatively to the ones he has been given thus far. I cannot even begin to imagine this. I am dreading the side effects of these new chemoes and hoping that his body miraculously holds up even better than it does with Irinotecan. He will become severely neutropenic (immuno-compromised) which will result in lots of hospital stays and no visitors. We will be kind of lonely until about August. We set up a Skype account and need to get that going so that we can have some form of the "outside world", at least when we are in the hospital. The majority of his treatments will be in patient so we will be spending a lot of time there.
Each day is getting better for Spencer this week. We returned home on Wednesday and the first few days were pretty rough. He is begging to feel a little more normal and is back to playing video games and practical jokes on his brother and sister. The doctors have him set up on TPN, total parenteral nutrition. It provides all daily nutritional requirements intravenously (I.V.) to those who cannot intake food. Because his poor little GI tract is so sensitive he was not able to respond positively to the tube feedings last week in the hospital. The TPN is supplying him with the nutrition he needs to heal his body so that he will be able to try tube feedings again and then hopefully normal food. He did, however, eat a few jelly beans and a butterfinger egg this morning. I told him that he has to drink a half a cup of a smoothy tonight. We want to get his belly ready for tube feedings but introducing little bits of gentle foods into his diet. The TPN set up was pretty intimidating at first. I have to inject vitamins and Prevacid into the big bag of fluid, spike the bag for I.V. set up, hook it up to the pump, set the pump, purge or prime the line and then hook it up to his central line. It was scary but our wonderful home health nurse, Dylan, got us all set up! He even came the next day to help. I am feeling a lot more confident about it and hope that we will not have to do it after this week and just work on tube feedings or better yet, regular food! Here is a pic of the TPN set up. It is carried around in a backpack for convenience.We have had a busy weekend and hope to get pictures all posted in the next few days. Uncle Owen, Aunt Theresa, and sweet Kanan are in town and so we have had a fun weekend. Owen, my brother, wanted to wait to shave his head until he got here to let Spencer do it himself. We planned a little family head shaving party to shave Spencer's head as well. He was so emotional about losing the last few hairs remaining that he didn't want to do Owen's and cried throughout his own shaving. I had originally expected the whole head shaving experience to be really emotional but because he almost had not hair left it was kind of a relief! He looks healthier with a completely bald head than a patchy hairdo. Jen Fauset of Jennifer Fauset Photography
graciously offered her services to our family during the "shaving of the heads". Jen was one of the fabulous photographers at our fundraiser and you can see her pictures on the Super Spence fan page I will post the awesome pictures on the shaving as soon as we get them back. Thanks Jen! Here are just a few from my camera of the evening. My little nephew Eastie Beastie (Easton) turned four this last week and had a birthday party and Jumpin Jacks. I thought it would be a fun time for Belle and me to enjoy. It was awesome, and so funny to watch the kids, and the adults flying all over the place. I have pictures from that night as well but not with me so I will post those soon, as well. Today we were able to enjoy some extended family time to celebrate the homecoming of my cousin Cory. He just returned from an LDS mission in Houston, Texas and it was so great to see him again. I had some great conversations with other women who are dealing with cancer in their families in some way or another I they gave me some great insight that I will share later with you. This blog is a little bit more informational and the insight is more emotional and spiritual so I will provide this in a more appropriate blog posting. I am so thankful for my family and the fun weekend we were able to enjoy before things get even more intense this next week. I will continue to play catch up on the blog this week and get things rolling again! Please pray for Spencer's appetite and tolerance of food. Please pray for him to have the strength he needs to begin his "hard core" chemoes! Pray for his happiness!

5 comments:

  1. Prayers being lifted for your entire family.

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  2. So good to have an update. My blog list didn't tell me you had updated so I randomly clicked just to see and I was happy to see you had updated. Spencer is a cute little baldy. You are so blessed to have so many people who love you guys!

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  3. Thanks for the update! You are all an inspiration! Love you Spence, you are always on our minds!

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  4. Just take them one treatment at a time. Kristoffer handled the chemo okay (thanks to Zofran), it was the radiation that was brutal. I hope Spencer's belly is doing better and can handle tube feedings so he can put on some weight. You guys are so strong. Kristoffer prays for Spencer often!!

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  5. YOU are amazing. SPENCER Is amazing. I just love you!!

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