Paxton Andrews's Journal
Written Jun 5, 2012 6:55pm by Amy SiodlarzPaxton will be discharged home from his short stay at Children's Hospital Monday-Tuesday. As of now, nothing but a very low white blood cell count (to be expected) was found in his blood work. It is possible that the low count was responsible for his demeanor.Exhale.I have to make a correction to the post yesterday to avoid any confusion regarding Laps For Pax. Proceeds will go to the MACC fund as unfortunately Paxton is not the only child within the Brookfield Central family that has been touched by cancer. Our best to all of those families in their fight.Again, continued gratitude to the now over 200 people who have donated to the Angel Network.Sleep tight little warrior.
Written Jun 5, 2012 12:25am by Amy SiodlarzI wish Danna and John got paid by the hour for their work towards getting Paxton well. It's endless. Money would be of no concern.You don't need both hands to count the hours of sleep they are getting.You would need your fingers and toes to count the number of medications given each day, another person's hands and little piggies to count the number of bottles (each with 6 parts a piece) sterilized each day, and yet a few more people to keep track of how many times a day Danna or John are singing to, smiling at or are nose to nose with their little boy reminding him of how much they love him. The greatest moments are when mommy and daddy hover over him and talk to him together. He is tired but definitely smiling and chatty at times and they are looking forward to him recovering from this round of chemo to hear more of that adorable voice of his.Sunday was the first day since May 8th that Paxton was not in the hospital or at an appointment! Everyone had the day off as Danna put it. Danna, John and little Paxton even took a short walk together to try to enjoy the sunshine.While at home, Paxton's day revolves around things all babies need: feeding, diaper changes, comforting and sleep. However each of these things for Paxton takes extensive preparation. Most of his food has been taken in by the feeding tube since his last discharge. Danna and John first attempt to feed him by bottle but if this seems too difficult for him, Paxton gets the rest through the tube which runs from his tiny nose down his throat to his tummy. Danna and John give him is nuk (the hardest working piece of baby gear in the house!) to suck while the formula streams through the tube to his tummy so "he can think he's doing the work" as Danna says. He is so very satisfied after his feedings that his arms that are FOREVER up at his chin finally drop to his sides like well cooked noodles.Diaper and clothing changes are just a bit more tricky because of the tubing in different areas but mostly because littles ones aren't so cooperative. The cuddling portion of the show is easy and so, so addictive.A primary focus as Paxton recovers from round two of chemo is close monitoring of his left eye. His eye looked much less swollen over the weekend which was a relief to Danna and John. However, because his left eye was unable to fully close for some time and despite the hard work to protect it, he suffered a scratched cornea. By all accounts these scratches are tremendously uncomfortable. The good news is that the scratch appears to be getting better. Paxton must wear a greenhouse over his eye all but ~1 hour a day to provide a good healing environment. Because the amount of vision in his right eye is questionable, it is very important to those caring for Paxton that his right eye heal well.Up until today, the plan was for Paxton to be readmitted to Children's Hospital for round 3 of chemo on June 11. The third round ("odd numbered" rounds) consists of 5 days of chemo but with pre and post preparations, the hospital stay is about 1 week. He would return home following chemo for 1 week, then return to the hospital for round 4 provided all systems were go.Change of plans. Unfortunately, Paxton was readmitted to Children's hospital on Monday evening. He had a scheduled appointment Monday and shortly before leaving for this appointment, his condition changed. It changed enough to raise concern about allowing him to return home without further observation and testing. As I write, there is no definitive answers. Infection is one suspect but is in the process of being ruled out. He does not have outward signs of infection however it has been mentioned that the steriods he is taking could mask fever. Let's all wish for a swift return home.The two benefits over the weekend were very well attended and successful. Thank you to AJ Bombers and the Team Paxton Guest Bartenders, Milwaukee Home T Shirts, Ten Bells, and to all who were able to attend. There were some very nice stories shared during these events of Paxton being a common thread among otherwise perfect strangers. So many people know about this baby boy. So many are rooting for him and so many have been affected by his story. I would also like to give a special thank you to Will, a little boy in New Berlin who has never met Paxton, who gave me the $2.79 earnings from his lemonade stand this weekend. I also thank him for graciously accepting my smothering hug.This week all eyes are on Brookfield central. On Thursday, June 7th, the Brookfield Bentral Lady Lancer Track Team headed up by Lorie Lewis is hosting "Laps for Pax". Teams of 4-6 participants are garnering sponsors for their team's laps around the outdoor track. It sounds like it will be a great time with music, food, etc. The girls and their coaches have worked so hard on this event knowing all money raised will go straight to Coach Bowe's (as they refer to Danna) little boy.On June 8th, Brookfield Central HS key club is hosting a blood drive in Paxton's honor. Bruce Follo and Ronn Blaha are spearheading the event which takes place 9:00 am-1:00 pm at Brookfield Central High School. Please contact Ronn, firstname.lastname@example.org or Bruce, email@example.com for more information or to sign up. You can also go towww.redcrossblood.org to register.I know so many of you check this webpage for updates hoping to hear word of how Paxton is doing. I got good advice over the weekend to let everyone know that if a day goes by without a post, try to assume no news is good news!Amyhttps://www.wepay.com/donations/paxton-s-angel-network
*uck Cancer and Other Happy Thoughts
Written May 31, 2012 11:21pm by Amy SiodlarzOn Wednesday May 30th, Paxton went home from Children's Hospital following his second round of chemo. His discharge home was right on schedule and was the earliest he could have returned home following this hospital stay.The brief time that he has been at home has been very difficult as he is suffering from mucositis and is sadly in pain as a result. Briefly, musositis is a side effect of the chemotherapy agents and can affect all mucous-covered surfaces from the mouth to the end of the digestive system. It is unfortunately very common in patients receiving treatment and by all accounts is very painful. Danna, unfortunately had to return to the hospital today to consult with Paxton's physicians about his pain. Paxton was not admitted but the family was encouraged to return should they determine more advanced pain management was needed.I had never heard of mucositis. I expect there are many things we will learn about cancer as this journey continues. They are things I would have been perfectly happy never knowing or witnessing. They are things I wish didn't exist.*uck Cancer.If cancer were up for recall, I'd vote it out.If I saw cancer driving on the highway, I'd give it the bird.If cancer were my neighbor, I'd put a flaming bag of dog shit on its porch.*uck, *uck cancer.Angry humor? Really, how appropriate is that you ask? More appropriate than writing what I'm I really thinking.Now, the very, very positive. There are two events this weekend occurring in the Milwaukee area to support Paxton, Danna and John. Hopefully some of you can attend either or both of these in order to meet other faces in Paxton's army of supporters.1) Friday June 1stAJ Bombers is hosting a happy hour from 5-7 pm. They will be serving Paxton's Punch. All proceeds from this drink purchase will be given directly to Paxton's Angel Network. Members of Team Paxton will be guest bartending.1241 N Water St, Milwaukee, WI 532022) Saturday June 2ndBenefit for Paxton Andrews at Ten Bells in Walker's Point. This event is being hosted by two of John's clients. It runs from 5 pm - 2 am.703 S 2nd Street, Milwaukee, WI 532043) Sunday June 24thA silent auction to benefit PaxtonOrganized by Dan Olkives, a friend of John and Danna2-5 pmCentral Bark Doggy Daycare420 S 1st Street, Milwaukeeemail firstname.lastname@example.org with any questions.There are several other events upcoming throughout the summer and fall all of which will be posted here as the dates get closer.So many have done so much already to show how far they are willing to go to help the Andrews family. One brilliant example is from Katie Klein who skydived last weekend in his honor. "His own personal paratrooper" as another put it. There are many, many angels on the ground as well doing what they can to help. It is so comforting.Thank you, everyone, for all you are doing to protect Paxton and his mom and dad.