My Musings

 When Taylor was in treatment I struggled with updates when things were bad… like how honest and raw do I get?  I didnt want to be too much, but I didn’t want to sound like a Pollyanna either.  Anyway, I’m dancing that line with this whole situation again.  I also don’t want to bash medical staff who are helping us, but I feel led to say a bit about yesterday and last night.  When we got admitted they put us on the oncology floor because of Taylor’s history.  The cancer team was communicating with the GI team and things took forever and got lost in translation, and I think very overlooked at times because the oncology nurses didn’t know what to do??  I’m not sure, but yesterday during the day, I feel like Taylor was taking a nose dive because of nurses and doctors not being on top of the situation, because of all of the above.  Again, I’m not bashing anyone, but we were frustrated.  Her doctor and nurse last night were truly an answer to prayer, the doctor came in and had blood and flu

 Taylor had another bleeding/loose stools episode while we were waiting for her to be transported.  After it she got so weak she literally started falling like a wet noodle.  The nurse and I together held her up until a wheelchair came.  She was soooo pale.  Transport finally came and we are now at childrens mercy.  The doctor came in and let us know right away that he didn’t think this was cancer related.  So that was a relief.  He’s not sure what’s going on though.  They are going to run a few tests and we are going to hang out until the bleeding stops or they know what’s wrong.  The sickness the family and Taylor have is Flu A.  She feels pretty terrible.  Blood is also on the way, that should help her perk up some. Her hemoglobin is down to 4.2 😳😳 she’s going to be getting 2 units of blood!

 Taylor had 2 bleeds this morning, so we headed to the ER.  We are waiting in a triage room right now to find out the plan.  We packed bags, anticipating an admission.  She is starting to feel the blood loss weakness.  We were soooo close to making it to the surgery day without a bleeds.  😭😭😭 I will keep ya posted on what goes on 💕 (surgery will still happen, just a great big bummer to be back at the hospital before it happens) We got into a room at about 5.  Taylor had 2 more bleeds (4 total so far this time).  She had to get two IVs because of a medication that they are running around the clock.  She’s not thrilled about that.  There is some talk about maybe moving the surgery up if they can.  Since we are here and IVs are done, we might as well.  We will know more tomorrow when the liver team is here.  We are all for that!  When Taylor had her first bleed she started crying and saying she just wants her surgery (so that she doesn’t have to deal with all this anymore).  I was wai

 We had a looooong day of waiting today!  Taylor’s liver doctor wanted her to get an MRI of her liver, to make sure it is healthy enough to make the rex shunt surgery work.  Since she had that nodule he wanted to see if she had more.  She just got done with the MRI and we are waiting for discharge!  He came to talk to us after the MRI got done and wanted to check them “unofficially” from what he saw it looks like her liver isn’t as unhealthy as he thought it might be.  He showed us the MRI scans and what he thinks is going on with her veins that go to the liver.  It looks like they are all over the place in kind of a messy-mess with a possible blood clot.  For some reason the blood isn’t getting to her liver like it should, which we know, but don’t know exactly what’s going on.  He also thought he could see the spot that’s causing all her bleeding.  So that was interesting.  He can’t know for sure until the surgeon opens her up, but it will be cool to find out what’s going on there.  T

 The scope went well!  She didn’t have any banding done.  She does still have the active bleeds below her stomach in the lower GI tract.  She, of course, still has the Varices in the upper GI, but none were bleeding right now that needed banded.  The doctor seemed pleased with where she is right now.  He explained the banding as poking fingers in a dam.  It’s a very temporary fix for a huge problem, so it’s fantastic she is getting this surgery soon!  He said if surgeries or scopes are canceled or scheduled right now the wait is MONTHS out!  He said something about not enough surgeons.  Anyway, all that to say, please pray we all stay well until she has this surgery!!  I have found out more about the surgery from the page I’m part of.  The average hospital time seems to be 8-10 days.  After that kids go to the Ronald McDonald house for 2 weeks.  What I’ve also read is the surgery is complicated and recovery is rough, but it saved the kids’ lives who got it.  The doctor told me it’s suc

 Taylor has a scope today, with possible banding (if she has any bleeders).  We are scheduled for an overnight stay.  She had her bags all packed and ready to go this morning (the girl is not a light packer, lol).  She’s been feeling pretty good.  We had a wonderful time as a family on our little get away.  God kept her well for it and we are so thankful!  We have a pre surgery physical and meet with the surgeon on the 18th and then her big surgery the 23rd.  I found an online community of people with the same condition as Taylor (portal vein hypertension which causes esophageal Varices) and it’s helped us know what to prepare for.  Taylor isn’t excited about the surgery but she’s ready to get it done.  She even saw photos of what will happen, and it’s pretty intense.  She handled it like a champ, she’s the bravest girl I know!  Let’s do this 💪🏼#TayTheFierce

 I’ve been told, by more than one person, to share our “series of unfortunate events”.  I didn’t want to, because I don’t want to sound like I’m complaining or using Taylors situation to make people feel sorry for us… but I feel like maybe I should, to say “look how God has taken care of us, despite allll these things going on!!” And say THANK YOU for those that have prayed and given and encouraged us! So here it goes, it’s long and it starts to get almost humorous because it’s SO MANY things. It all started about 4 months ago.  Across our whole basement and through our garage a giant crack appeared (like broken cement, ran deep!!).  Right around that same time our washing machine, and dishwasher also quit (what should have been a simple installation of the dishwasher turned into a 3 day ordeal!!).  Then both suburbans decided to have twin problems and they both needed new brakes and fuel filters (randy fixed both things on both vehicles).  Not long after that the red suburbans engine

 It is officially Christmas Eves eve, and that means that this sweet face turned 12!!  From the moment Taylor was born she just had a little extra sparkle that she loved to share with anyone who came into contact with her.  I like to think of it as “Taylor confetti” she just radiates her love for life, and she kind of tosses it around as she goes about her day… it makes people smile.  Her greatest joy is when she can give gifts to those she loves.  She gives the best hugs and knows innately how to make people feel special.  It’s kind of mind blowing that she is now a survivor of 2 deadly diseases- neuroblastoma and esophageal varices.  She doesn’t let it get her down, and being a victim isn’t even something that would ever cross her mind. Words that come to mind when I think of Taylor are: strength, happy, joy, funny, love, beauty, thankfulness, empathy, energy, and kindness.  She’s such a special kid and I am so thankful that God is using her story in such a huge way.  It makes her ha

 We finally got the call for Taylors surgery today.  I waited to post, because I needed to process it.  The earliest date for her to have surgery is Jan 23rd.  Honestly, it makes me frustrated that it’s such a long wait… She has active bleeds that can’t be tied off, that are continually bleeding.  So over the next six she is at risk for needing hospitalization and blood transfusions.  She had 2 hospital stays and 5 blood transfusions in less than 2 weeks…. So to say waiting that long makes me nervous, is an understatement.  My head knows God is in control, but my heart is taking awhile to catch up to that.  Some good news is, she is a candidate for the surgery!!!   The outpouring of love and support we have received has been SO amazing!  Thank you for all the kind comments, sacrificial giving, prayers, meals, etc.  It’s been a wild ride and we feel so undeserving of all the kind gestures, but we are SO thankful!  Please pray as we wait for surgery.  Specifically that we would know when

 *these two pictures are of Taylor when she was tiny.  One of me with her, and one of Randy with her.  We love her so much and want to shield her from all the hurt, I thought these pictures conveyed that the best* Taylor keeps asking me “is the surgery going to hurt?” I tell her, it will, and I’m so sorry she has to get it, but it will make her better, so she has have it.  She understands that, and she doesn’t want to have scopes and bands or bleeds anymore (or IVs, she hates those IVs, lol), which will keep happening until they can fix it… but it makes her very nervous (if you could pray about that we would appreciate it).  Today in church our pastor said that we as parents want to give our children the best!  Sometimes we have to say no, because we have something even better for them.  Just like with Taylor, I don’t want to have to watch her go through pain, but she has to go through this pain and surgery for her good- so that she can get better.  God wants the best for us too.  He c

 I know many are wondering if we got the call for results on the scan/surgery day… no news yet. We saw one of her doctors in the hall when we were leaving the hospital after the scan.  He was headed to look at the scan.  He told me that in the morning they would know the results… that was on Thursday… I’m assuming they are making a plan of action 🤷🏻‍♀️ this waiting is rough.  Taylor still has active bleeds in her lower Gi tract, so it kinda freaks me out if I dwell on it.  The other day, we were riding in the car and Taylor felt pretty terrible (I think it was right before her second hospital admission).  This song came on the radio.  Taylor reached over and turned it up.  She said “this is my favorite song”.  Listening to the lyrics, I’m like, girl this is a good song.  “…. Without You, I fall apart… oh I need you, oh I need you, every hour I need you, my one defense, my righteousness, oh God how I need you…”.  Oh how we need Him.  I often think about how hard this would be without

 We ended up not going home last night.  Taylor’s pain in her chest (from the bands that are tying off the bleeding Varices) was pretty intense.  We opted to stay, so that she could get the meds she needed so that she could stay on top of the pain.  Anyway, she is feeling soooo much better today, and I think we are busting outta here soon!  We will be back for the big scan tomorrow, but that is out patient!  This scan will tell us so much about what they will do for the surgery and when it will be.  I’m anxious and nervous about the big surgery, but looking forward to knowing so that we aren’t in waiting limbo anymore 💓 It’s the big scan day!!  This will tell if she’s a candidate for this surgery, and what plan of action they will take.  So let’s do this 💪🏼 We were in a hurry and Taylor is pretty weak, so we found a little wheelchair in the parking garage.  I kept thinking the elevators were deeper than they were, and each time we got in a new elevator I would crash her into the bac

 I know some of you were praying very specifically that God would show us a very clear path to take, where we had no doubt that His hand was in it.  He allowed some things to come together in my mind last night, from a Facebook memory.  Along with the fact that we are here with the top surgeon for this surgery, and the circumstances that brought us here- circumstances from a decade ago!!  I even tried to get in the way of God weaving this amazing plan, and he ever so gently moved me out of the way.  Anyway, all that to say, we have so much peace moving forward and I’m feeling ever so loved by the creator of the UNIVERSE, that He would work this plan and then let me put it together in my mind (to give us peace moving forward).  It was a God hug (God hugs leave me 🤯😍🥰).  Thank you for praying!  I will have an update soon about what will be taking place.  the doctors are doing their rounds and will be in here soon! (Taylor fell asleep on my hand yesterday, she wouldn’t let me move it e

 Taylor had several blood clots come out tonight, so we are headed to the hospital.  They weren’t huge (about the size of a quarter), but we were told to come in.  To my limited knowledge on this it seems like she probably has another bleed.  I was pretty upset when we were packing for a possible hospital stay.  Randy pointed out that at least we know what the problem is this time, so we aren’t starting out blind like we were before.  Will update as we know more 💓 Her hemoglobin dropped to 5.2 so we are getting admitted.  It sounds like blood is maybe leaking and pooling inside ready to drop again 😞 ugh.  This is lame sauce you guys.  I hope they do the surgery sooner than later.  I’m so glad we took her in tonight! We finally got a room.  She’s going to get 2 bags of blood tonight (today I guess since it’s 3am 😅).  They will likely do a scope when her hemoglobin is at a healthy level.  They will tie off any bleeders while in there.  The doctor said she will likely have some big ble

 Full disclosure-  this surgery for Taylor is kinda freaking me out.  It seems like no option is a great or easy option, and that makes me sad.  She’s been so frail and low energy since she got home.  She’s usually so vivacious and perky and excited about everything.  I can tell she wants to be, but she just doesn’t have it in her 😭😭 Please pray for wisdom as we move forward.  I remember how much I hated making a decision when neither decision seemed like a good one (back when she was in cancer treatment)… and here we are again, making choices with her life, that are truly terrifying! But this issue is very life threatening and can be fatal, so it needs to happen before she has another bleed 😩 … it’s just scary.

 Information overload coming, and a forewarning that I am not very good at relaying medical stuff 😬 First off, we went in for blood work this morning since Taylor was looking jaundice last night.  I never did hear back from a nurse or anything, but a couple meds were called in for Taylor that we went and picked up…. I’m not real sure what they are for, but it must be something she’s low in.  I’m going to ask about it. Secondly, since we are all holding our breath over this, that nodule looks like it’s NOT cancerous!  It’s got fibrous tissues in it, which is what’s starting to happen to her liver.  What I understood was that it’s maybe more condensed in that spot.  I didn’t know it was possible to hold my breath for 5 days straight, but I think I was doing just that!!  I’m breathing so much easier now!!  Her liver from the test has “patchy mild fibrosis” so they would like to fix the blood flow issue, so that her liver doesn’t become more damaged.  Once it has the fibrosis the liver ca

 No news on the biopsies yet 😩😭.  I never want to be drama seeking, so I hesitate to bring things up… but 2 things are concerning me (aside from the other huge things 😅).  Taylor has had some pretty extreme hip pain for a good long while now.  No one can seem to figure out what’s wrong with it.  X-rays have been done, doctors and chiropractors have been seen.  It was so bad tonight that she was crying pretty hard.  I, of course, worry about cancer, and brought it up while she was inpatient… but her other issues were so much more pressing that they didn’t seem concerned.  It’s affecting her quality of life because it bothers her so much. (The picture is of her walking between two of her siblings as they helped her walk- because it hurts that much) The other thing is she looks jaundice and her energy level has tanked (and she’s super active and people oriented normally).  I called the hospital and talked at length to one of her doctors.  We are going in for blood work tomorrow.  She s

 It’s interesting how even though we have been through shock and terrifying times with Taylor, it doesn’t make it easier to go through it again.  Over and over this past week I was so thankful that our hope was grounded in the truth that God is SO faithful.  I heard this song tonight and my eyes welled up with tears.  Did you know that God holds each of our tears in a bottle?  Watching our kids hurt, makes us hurt too!!  It makes us sad, and sometimes it makes us cry.  Our pain and tears mean something to God too.  He loves us so much, even more than we love our kids!  Which is a lot!!  He doesn’t like to watch us suffer… some may ask why there is suffering.  I don’t have the answers for that, I just know that until heaven, because we live in a fallen world, there will be suffering.  But you know what?  Compared to eternity, this life is a vapor!!  We have ETERNITY in perfect existence to look forward to!!  This is how —> “For God so loved the world, that He gave His only Son, that

 This post on Facebook got 1 million comments 😳 Well, I was really hoping we would never need this page again and I planned to keep it closed forever.  However, on Tuesday, Taylor started bleeding heavily so we took her to the urgent care, where she continued to bleed, so we were then sent to the ER.  Over the next few very scary days, we found out by a scope that Taylor has Esophageal Varices.  Since she had such heavy duty chemos during her cancer fight, her liver- unbeknownst to us- had gotten hard.  Since her liver is hard blood couldn’t flow through it.  Her blood rerouted to her esophagus and she developed EV.  During the scope they tied off the bleeders, which put a band aide on the problem, but didn’t fix the blood flow issue.  They did a CT scan to check the liver and then to see if she has a safe way to reroute the blood to her heart.  The plan is to do a surgery to make a new pathway, if her liver is healthy enough.  We don’t know much about whether they found a pathway yet