Sept. 17 C. Diff

Update

Since the fever Trent was found to have a pretty horrendous bacteria called C. Diff. He was asked to return to the ER and was then admitted to the hospital for 2.5 days son that they could get the symptoms under control. He no longer has symptoms and is home from the hospital since Saturday afternoon. He has a couple more weeks of antibiotics and then hopefully we’ll be finished with those. In the meantime there has been no baby or kid-kissing or hugging/touching. Its been difficult to say the least. Mom is on 24 hour baby duty. Trent helps when and where he can of course. The girls are both down with there own bugs as well. Hopefully we’ll all be feeling better very soon.

We had some very welcome visitors while Trent was in the hospital. It meant a lot for his best friend Curtis and his new wife, Amanda, to visit. The spirits were definitely lifted. 

Also, with the much needed help of Trent’s awesome infectious disease doc, Elizabeth Douglas, our squeaky wheel, we were finally able to get an appointment at MD Anderson! I was calling and leaving messages for our “patient representative” 3 times a day, but she was able to call today while he was in the office and work doctor magic. I’m so thankful for her. We go Sept. 30. Between now and then we’ll get everything in order, focus on keeping everyone healthy and spending time together and with friends and family.

Sept. 11 Fever

Fever

 

 

We’ve had better days. Trent’s fighting a fever and has been vomiting. We made a trip to the ER (Thank you, Ginger) and they ran bloodwork, he got a bag of fluid and they took chest xrays. There appeared to be increases in size according to the xrays. Trent wanted to come home and fight the fever and other symptoms at home, so we’re here. The er doc is thankfully trying to expedite the MDA process. Hopefully we’ll hear from them again tomorrow to actually schedule his appointment.  (turns out his vomiting and fever were a C.Diff infection, and they sent him home with it!)

Sept. 9 Surgery

Surgery

Trent has surgery on his arm tomorrow for what will hopefully be the last time. He’ll have the external fixture removed and as of yesterday there was no plan to put anything on the inside and it’s an outpatient procedure, yay! This is #5 and he’s know where near as nervous as he was a month ago, just aware. We’re trying to navigate things like returning to work and whatnot, trying to get back to what our life will be like now. I’m very nervous about him returning to work for so many reasons. (Wow. what a foreign though at this point.  So naive.)


We haven’t heard from MDA yet, but soon I hope. 


Thank you so much for thinking of us and supporting our family.

Sept. 7 Waiting…

Waiting – UPDATED – turns out we did not have a benefactor.  We will still owe upwards of $300,000 for Trent’s accident alone.  Goodness, it was good to think, even for a second, that we did not have that hanging over us.  Now, we just don’t think about it.


Waiting

The oncologist appointment last week went well. It wasn’t more than a check-in so that he could officially refer us to MD Anderson. Now, we wait for a call from MDA to schedule with them. At best we’ll hear something this coming week, and the following week at the latest. For now, we wait and now I wonder if there is anything more that I should be doing. Apparently, yes, because the tumor grew quite a bit between his accident and about the 3rd round of Chemo. Hindsight, dammit. (Feb. 11)
However, our time might be somewhat occupied between now and then. Trent has an appointment with the orthopedist tomorrow and they’ll likely schedule another surgery to remove the ex-fix from his arm and possibly place something on the inside of his arm instead. We won’t know for sure until tomorrow morning.

We received a series of bills from the hospital and various doctors that Trent has seen. The one from the hospital stay itself (12 days including 5 days in ICU) totaled over three hundred thousand dollars. At the time of the accident Trent didn’t have insurance. After the initial sticker shock wore off a bit we looked at the bottom of the bill in the area for patient payment, which was marked 0.00. Meaning we owe nothing. The best we can imagine is that a charity picked up Trent’s case for any number of reasons. Whatever those reasons might be to say that we are grateful is the utmost of understatements. Going into chemo with a $306,000 would be devastating, but now we can move into that phase with much more reasonable baggage. Thank you, Jesus. Praise God. We are being carried through this entire thing. Prayer works. Please continue to share our story. My husband has been given another chance to tell an amazing story that has just begun.

Sept. 3 Big Days Ahead

Tomorrow is the appointment with the oncologist, the first since leaving the hospital 10 days ago. We’re not quite sure what to expect and have trained ourselves to just be ready for anything. The best outcome would be leaving his office with a date for Trent’s appointment at MD Anderson. I have a lot of questions and need to have my game face on as well.

Trent heard from work today and as of now they are working for him to be able to return at some point. Great news! We just don’t have any idea when that will be. Could be 3 weeks, could be 3 months depending on so many factors. I’m in a very similar situation but without the worry of “if” I will have a job, thank goodness for contracts. Not only that though, I also have a very supportive and understanding work family. I’m exactly where I need to be. I’m actually still on maternity leave, as crazy as that is.

The kids are still holding steady. Gavin is hot and cold with everyone but Sabrinna these days. He got love for her all the time. He is concerned for his daddy and says “it hurts” when he sees his arm and his scars, but he’ll hug, kiss and sit with Trent now, which Is great for everyone. Cole is a different story. He hasn’t quite warmed up to Trent yet and won’t really tolerate sitting or laying with him. Sometimes heartbreaking as we are subtly reminded of the days ahead and what they might bring. I truly pray for peace in pur hearts regarding these baby boys who are just so little. The girls are good so far. School seems to be keeping them mostly busy. There have been so many changes for them, my radar is on full alert. Mom is doing a great job of heading things off at the pass for us in regards to all of the babies who leave the house, a huge help and we can’t thank her enough.

Jeez, I said this would be short.

His arm has been hurting a lot today and is worried that he might be building a tolerance to his pain medication. Unfortunately, I think it’s just going to hurt for a while. The appointment with the ortho docs is Monday and that can be addressed then along with the next step with the inside of his arm. He’s developed some mystery blisters on the outside of his arm where the road rash was that’s troubling. We gave it 2 days but I think if it doesn’t look at least 50% better in the morning it’s time to call plastics.

Our moral is minute to minute. We are still in disbelief. Trent had his Dad take him to the crash site today to see if he could find his wallet. He said he knew exactly where it happened and found a bunch of debris from the truck. A pen, a sharpie, his small bottle of cologne and the belt that saved his life. The tire tracks seemed to help to tell the tale and they didn’t hang out long. I don’t think it was exactly going to turn into Trent’s new hang out spot.

Better news! My bff Jennifer DeLara who is turning into event planner especial has locked down the date and location of the fundraiser that she is spearheading for us. Amazing! She has asked me to add the info that she has so far.

Save the Date: Sat. October 25 at Hanover’s in Pflugerville, Tx. This is s kid-friendly event. So far it looks to be a volleyball tournament (of course ??) and silent auction. She is soliciting help of all kinds so if you feel the pull let me know and I’ll put you in contact with her. This is a big undertaking and I know she could use the help. She’s asked me to ask you to please spread the word.

We can’t thank you enough for all of your kind words, offers for help, prayers and good thoughts. They carry us through those low times.

Sleep well and tell somebody you love them.
Galatians 6:9

Sept. 1 Happy Fall

Tonight is the best that Trent has slept since the accident.  I think he just couldn’t fight sleep anymore.  That sleep does seem to come with a cost for him though, but hopefully he’ll get some relief when we go talk to someone tomorrow about the after effects of the accident.  If you are one who likes to pray for specifics rest, real rest is at the top of the list.

His arm is doing really well.  He’s battling blisters from a sunburn on his arm after a walk with Gavin yesterday, which is indicative of a battle that in fighting – his inability to sit still.  His hand swells to twice its size daily.  Because of who he is Trent is having a hard time balancing doing too much and doing too little.  Add that to the prayers list as well.  His skin flap is doing great, on a happier note! He had all removable sutures removed Friday, which is a great sign.  He is also no longer on any IV antibiotics.  He’ll have the picc line for a little longer but all is good there too.  We’ll see the ortho guys very soon.  I know he’s looking forward to having the external fixture removed and I’m looking forward to the same for selfish reason – I fear for my life on occasion and spend a lot of time ducking and dodging his sudden arm movements.  Alternatively, I caught Gavin preparing to hang from it yesterday.

The kids seems to be doing well.  They’re all so tough its hard to tell what they really think.  I will tell you they do love all of the visitor, and of course the food.

Work is something that is on the radar as a concern. I’m still on maternity leabe but have used up all of my full time pay and have moved into the halftime pay portion of my leave,  which I am very grateful for.  I have heard that my school district wants to know how they can help, which is awesome.  In supposed to meet with them this week to see where I stand and what they can do – prayer list item #3.

As far as cheffing is concerned it seems to be on the backburner for awhile – pun partially intended.   We just don’t know and that is incredibly difficult for my husband.  He loves to work, he is a great provider and he LOVES to cook.

A wise person told me yesterday that things will get easier before they get harder.  That seems to be the trend and I’m going to hold on to that as long as possible.

Thank you so much for the continued thoughts and prayers.  Thank you for spreading our story, Trent’s story.  Its comforting to know that people know for some reason.  I guess because we know we’re not alone.  Synovial Sarcoma accounts for only 5% of all cancers so if you come across a trial or a bit of information worth looking into please share it with us.  If you have anything you’d like to say please share that with us too if you can.  Kind words go a long way.

Happy Fall 😌🍁🌲