These shirts help Support 3yr old Braxton through his tough battle with ALL Leukemia. Please help support this family!
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@getwellbraxton-blog
These shirts help Support 3yr old Braxton through his tough battle with ALL Leukemia. Please help support this family!
1 year ago on Oct 15th Braxton was admitted to the ER because he could no longer walk & was in excruciating, chronic, spasming bone pain. For 6 days, we believed this to be from an infection...only to later find out that it was cancer. This last year has been unbelievably tough and overwhelmingly heart-breaking. Braxton came so close to dying 3 times throughout his chemo administration and he suffers every day from the side effects of them. He does not get to live a normal childhood and we as parents are heart-broken every day. Depressed and anger are too common of words to describe what we all feel, but somehow, Braxton is so forgiving to all of this. He still has his vibrant personality and his sweet charm, and although he gets scared of treatment, he toughs it out and is so proud of himself when he doesn't cry. He is truly amazing & he is so incredibly strong. 1 year down. 1 more to go. Braxton Strong! "
UPDATE FROM JESS SEPTEMBER 1ST 2014:Braxton has sedation spinal chemo tomorrow (TUESDAY) afternoon. The Sedation-Teams' plan is to stop him from breathing for a few seconds so that he doesn't vomit while sedated. When they puncture his spinal fluid, it should jolt his senses & wake him up enough to breathe on his own... I'm in panic mode & have been since 9 weeks ago when they told me about it.
September is "childhood cancer awareness/ blood cancer awareness" month. Please do whatever you can to spread awareness or donate to research. No child should have to go thru this.
2-year old Braxton has made it through 9 months of Chemotherapy treatment for Leukemia! Here is a fundraiser to help offset the costs of these past 9 months & to help assist the next 15 months of treatment. The entire treatment protocol is a total of 2years, so we still have a lot to get through. Thank you all SO much for your support !!
Click the image above to be taken to his GiveForward site. You can also click HERE or copy paste this link: http://gfwd.at/UkCeQz
Braxton goes in for another spinal tap on Tuesday. We're hoping the sedation team will figure out a good medication combo. He's been having horrible reactions to everyone they've tried to far :( this photo was from last week when Braxton had to go down for an ankle X-ray due to his osteopenia. You can see how anxious he is, but he's so brave keeping it together like this!-ra
It's been a month, which means it's been a pretty good month... till yesterday, when we all stood by and watched Braxton gasping for air, screaming & dry heaving after we watched a needle go into his spine, again. Here's a BRAXTON UPDATE FROM JESS: "never a dull moment down in sedation. Saw my lil man turn blue today-choking on dryness. He gets Robinul to help dry up any secretions during the sedation to prevent any chances of aspirating. However, he gets too dry and literally cant breathe well, nor can he sleep off the sedation due to this discomfort. So, on Ketamine, Versed, Robinul, & Benadryl, Braxton fought for his breathes today until the drugs wore off. We are back to the drawing board for his sedation protocol. " I'm posting a photo of how silly and happy he is, despite the horrible things he's going thru. I'm always amazed at how humbled he makes me feel, if this little guy can smile, so can I.
February 20th update: Unfortunately braxton's ANC is too low to start the next phase of chemo. We were there on Tuesday, starving the poor kid for sedation as he was due for another spinal tap- here's how it works. Jess, Kyle,and Braxton go to the clinic around 9-10 and have blood work. They then test the blood to see if his levels are okay to proceed. This takes hours. If they are okay he goes down for sedation. If not they postpone till next week and start all over again. This is anywhere from 4-6 hours 2x a week that they have to sit in that crowded clinic and entertain a starving 2 yr old for hours. Braxton's so good though and loves the clinic playroom/some of the volunteers that play with him. Someday I'll try and video how amazing he is at this whole process, he knows the drill by now and takes me to all the stations to show me what's next. He's the best kid ever. Sadly very delay in treatment lengthens the treatment, so let's hope his levels get back on track, Braxton has things to do!!
Today I got to spend a fun day with Braxton & Jess- here are some shots, and here's an update from Jess:
Braxton Update: Jan 12th: Braxton finally got off the steroid for this cycle which is so nice, because it's less nasty meds to give & less awful side effects! He is achey coming off of them, but he had a nice day riding his bike with his sisters! (thanks gramma, pa, & auntie!)
(He craves cheese while on the steroid & went thru 10 slices before I fed him breakfast lol!) Although he has been walking, he isn't walking correctly. We are going to have a PT intervene & hopefully help get him back to walking properly again! He has also been grinding his teeth throughout the day, so we may need to see a dentist soon as well.
Braxton Update: Tuesday we began the first cycle of a new phase. This is how it goes: Tuesday AM Day 1: We go to clinic for 4 hours for port access & blood work. He receives: Aspariginase shot, Methotrexate IV, Vincristine IV, Oral Steroid (Dex), Oral anti-Acid, Oral anti-Nausea. Tuesday PM: Oral Steroid, Oral 6mp (chemo), Oral anti-Nausea. Oral Benadryl (That's 5 chemos & 3 meds to counteract the side effects from them) Wed-Thur Day 2-3: Oral Steroid 2x/day, Oral anti-Acid 2x/day, Oral anti-Nausea 2x/day, Oral Benadryl 2x/day. Fri Day 4: We go to clinic for 2 hours & get Aspariginase shot, then, Oral Steroid 2x/day, Oral anti-Acid 2x/day, Oral anti-Nausea 2x/day, Oral Benadryl 2x/day. + Oral Bactrim 2x/day to the list. Sat Day 5: Oral Steroid 2x/day, Oral anti-Acid 2x/day, Oral anti-Nausea 2x/day, Oral Benadryl 2x/day, Oral Bactrim 2x/day Day 6-14: Oral 6mp, Oral anti-Nausea Tuesdays: + Aspariginase shot, Methotrexate IV, Vincristine IV @ clinic Fridays: + Aspariginase @ clinic Day 15-21: NO MEDS Day 22: We start this cycle all over again for the next 27 weeks He is not compliant with taking most of these meds, as they taste so horrible it's hard to mask. Some times he vomits across the room from them/ The Chemos drop his immune system significantly, so we are still being really cautious with him/ The steroid keeps him up at night, so he isn't getting proper rest.
Jan 3rd 2014: Braxton's chemo went well today at the clinic. Quick shot & then we played in the playroom for an hour. We had to start up his meds again, but he did really well with them.
He also let me shave the rest of his head- the parts we missed the first try lol
Dec 31: Braxton & I had a dance party tonight over the fact that he didn't have to take any meds! woop woop! Best night ever!
"no more bluuu!" "no more booboo"
Btw, the clinic visit went well today. His immune system is a little low, but no need for blood transfusion & he had no reaction to his Chemo shot.
Score!.
Braxton update: 12/28/13: The CNS phase of chemo is done. Those sedations were horrible experiences, so we are incredibly happy for it to be over! This next phase is a 'Consolidation Phase' where we go to the hospital 2x/wk for 30weeks for a Port access for blood work & a Chemo shot into the thigh. Each visit will be about 2-4hours as we need to wait for blood results & wait to see if he develops an allergic reaction. As far as meds, we have dwindled it down from 16meds/day to 4meds/day. It is still hard as the meds taste like rubbing alcohol, but Braxton is sadly getting used to it. Every couple of hours every day, he looks at me and anxiously asks me, "no more port? no more boo boo? no more hospital? no more blue (medicine)?" It crushes me more and more every time... Now we have to add a shot in the leg to that list... This cancer treatment is so unbelievably brutal-
CHRISTMAS UPDATE Dec 24:Merry Christmas! Very sadly, both my hubby and I are sick so haven't had a chance to see him too much. This is a photo from Christmas Eve though, he was such a funny kid that day! Super 2 year old-ish and silly.
And here's Jess's update: Dec 24th: Sedation went well as we separated the main chemo IM shot & the sedation meds w/ the spinal chemo. For both processes, he reacted with a bright red face and slight temp, but separating them & pre-treating w/ Benadryl made a less of a reaction. We have one more sedation spinal chemo on Thursday. After that, we only get the main chemo IM shot 2x/wk for 30weeks. -Should be slightly easier on him.
Today, he is in great spirits. Running around, pretend playing, and eating well. Can't wait for Christmas at home tomorrow!!!
Lots of people are asking me what they can get Braxton for Christmas, Gift Cards are a great way to help! Here are some I think they'd benefit from greatly: Stop&Shop (grocery) Target (air filters, cleaning supplies, diapers, toys), Amazon ( what can't they get?!), Wholefoods (Braxton needs some healthy, easy to prepare foods), iTunes credits (for education apps and 'take a 2yr old's mind off of chemo' apps), gas cards, or even those visa gift card type option, or really anything you feel comfortable gifting! He also loves the typical 2-4 year old toys: cars, play-doh, blocks, choo-choos, etc... Kyle & Jess could use a date night somewhere in Providence, and Braxton has 2 older sisters in 1st&2nd grade who would love to show him some secret play-doh recipe or take him away on an imagination adventure with some new toy to help them along So many people want to know, I figure this is easiest if they get any cards/gifts they can't use, we'll donate them to the children's hospital, so it's a win win! And no worries getting anything to them in time for Christmas Day! Feel free to ship any gifts to: Rhonda Dudek Wyman c/o Get Well Braxton 1005 Main st. #1103 Pawtucket, RI 02860 Or email any online gift cards to: Info (at) GetWellBraxton. com Thanks for all the support, prayers, wishes, and encouragement so far thru Braxton's battle. It means the world! I hope the holidays are gearing up nicely for y'all! Hugs, Auntie Rhonda
(ge's giving pooh bear some meds) DEC 22nd UPDATE: after being in the hospital for sooo long, we finally got 5whole days alone with him at the house it was great to have him home, but giving him his 16meds got really hard really quickly. On the 6th day, we went in to the hospital for his sedation intrathecal spinal chemo. Because he had an allergic reaction last time, we tried a new sedation med, but he had an allergic reaction to that one as well. It wasnt a bad reaction, but he was blotchy red and a little swollen, and he threw up 3 times that night. 4days later we went in for another sedation IT spinal chemo and we used the same sedation meds, but added Benadryl to offset the reaction-well, he had an even worse reaction. He was more blotchy red, slightly swollen, and then it turned into a body rash, bright red face, and high temp. Within an hour, it subsided. we still arent sure whats causing his reaction, since he gets so many meds at once. This is supposed to be easier, and its so heartbreaking and frustrating to see him struggle so much with his treatment. (Also, the sedation team has made us wait hours every single time-super frustrating since Braxton cant eat/drink the whole day). We go back for his 3rd sedation IT spinal chemo tomorrow morning and his last one the day after Christmas. I am hoping it goes smoothly and we get to go home! On a positive note, although he has been on Morphine throughout the days, he is now not only walking by himself, but he is running, squatting, and standing up all on his own!- Jess
DEC 20th Update: I can't believe it's been so long since the last post! Braxton came out of his fevers and swelling episode, and was able to be home for a bit. He had some ups and downs, but no new unscheduled hospital stays. yesterday he had another chemo treatment and was vomiting & sick feeling all night so couldn't sleep much. Tonight I was able to throw snowballs at him while he was in the window of their house (dang sore throat!)and he was all smiles about it! I also got there as gramma and popop were leaving so I'm sure he got some good visiting time in. Once we have Internet ill be able to update again! - Rhonda
Braxton is home!!! Lets hope he gets to stays longer this time... He was all dopey from morphine and antibiotics and that crazy fever spell so he was super out of it when we went over- but he was home, yay! - ra
Dec 7th: Fever and rash is under control, but mucositis from Chemo is still painful. We are hoping to go home tomorrow with pain meds if he can handle taking them orally... Fingers crossed!
Dec 4: Braxton's fever has finally stopped. All tests came back negative, so it must have been some random virus.
His mucositis is still really bad. He is in so much pain that he threw up just looking at a syringe of medicine Today totals 41 days spent in the hospital, out of 50 days since diagnosis