Tom my hunny

I am here in the hospital with Tom writing as he rests after a traumatic past 2 days.  I will attempt here to update you all on what has happened these past few days since we returned home from sunny warm Florida to winter storm freezing cold Wisconsin.

Looking back, things started to decline about mid-vacation last week. Tom started to become a little confused and saying weird things, randomly. My sister and I were quite concerned and talked a lot about it one night.  We returned home late Monday night, the 31st. Tues the 1st was Tom's 39th bday, and I called the doc in the early AM to get an appt with his Oncologist because we knew he needed to be seen and have bloke work done before he could start round 2 of Temodar (the chemo pill).  However, I was mores concerned about his constant neck pain and confusion. They set the appt for Wed at 10:30am.  We came here and Tom ended up being admitted to the hospital.  He was low on potassium, dehydrated and even more confused than days prior.  When Tom took off his shirt to be examed, the left side of his neck and shoulder was clearly swollen.  I know for a fact that it had not been swollen at all all week last week, or the days we've been home, and even the night prior, because he had been taking a lot of showers to get warmed up and I continued to put lotion on his skin to keep his skin hydrated (it was drying out quickly).

We also learned, after Tom was weighted in, that he lost nearly 20 lbs. in the past month alone, totally his weight loss due to his illness to nearly 60 lbs.  Scroll down or click on earlier posts if you want to see pics of Tom a few years ago, and more recent pics in my vacation posts to get an idea if you really wanna see the changes.

Once admitted, Tom was hooked up to pain meds, morphine, and MRI and CT scans were ordered stat.  For the night, Tom was comfortable and got much needed rest.

Thursday morning we (Tom's parents and I) arrived early to meet with the doc in Tom's room.  Doc explained Tom had significant pain complications through the night, and that the MRI scan showed negative for melanoma in his brain, (it is very common that Melanoma will attack the brain first before other organs) so while this was good news, we still didn't have an answer regarding his confused state of mind. 

CT scan showed the melanoma has completely spread throughout his body through his lymph system.  I had a chance today (Friday) to see the scan of myself since I had seen all of the scans he's had the past 8 months that we've been fighting since this return.  It was obviously seen in the scan, big enlarged lymph nodes surrounding his aorta and major nerves that run up and down the spine down to the legs.  No doubt this is what's causing his terrible pain.

The morning on Thursday quickly took a turn for the worse momentarily after the doc had left the room.  It was just me and Tom's parents with him and it was right around 8am when he began to shake.  Everything happened so quickly, my initial reaction was that he was experiencing the shakes like he did when he was on chemo in-patient in 2005.  As soon as I hit the nurse call button for warm blankets to rush in the room, Tom began in very uncontrollably having a seizure, I ran out of the room and yelled for help.  Instantly 10+ people were in the room to help him through and be safe with pads on the bed rails and meds to calm the brain.  It seemed like it took forever.  Tom's dad had to leave the room, saddened.  Tom's mom and I clearly lost it and were very afraid.  It was the most horrible thing I have ever witnessed.

I know a lot of people have commended me for my strength through all of this, and I honestly can tell you I am not any type of super human, I don't have super strength, I am humbly human just like you.  I do have a gift that God had given me to be able to maintain a level of composure in order to help Tom, his family, Nathan, and friends to keep faith and hold on to their own strength.  Nathan is so young, he knows Daddy is sick because he's seen him vomiting and having dry heaves through this.  I talked to Nathan last night and told him Mommy is helping Daddy, and Daddy is with the doctor at the hospital.  He repeated to me "yeah, Dada sick. Dada dot (doctor). Dada hops (hospital)"  Yes, I am human.  Yes, I break down.  I just cannot imagine life without Tom, especially for Nathan.  Ok, I have to done going on about this or I won't finish here....

Since the seizure, Neuro consult was ordered, stat, and a brain wave test was ordered which showed no further seizure activity, but Tom continued to be unresponsive.  The Neurologist came in to talk to us and at the end of our conversation said we may be doing a spinal tap to find out if there is any melanoma in his spinal fluid, which could be another contributing factor to explain his severe pain in his neck and pain in general.  It's Friday now, and the spinal tap will be ordered today to be completed...I'm pretty sure, Doc Onocologist said this AM he wants it, but Neuro has to come up and consult again today.

So what caused the seizure is not clear yet.  The MRI was negative, but I have a strong conviction that something was just missed.  Turns out the doc and his NP (right-hand lady doc) both feel the same way.  There may be another MRI this weekend yet, but we will wait to find out.  As of now, doc feels strongly, based on his expertise that the pain meds are the cause.  Tom's pain had increased, so his dosage has increased, and it may had simply reached the boiling point and his body responded with a seizure, as a result.  The morphine drip was ordered to cease immediately, and a stronger dose of the pain patch Tom had been on previously was placed on his back.  It's a 72 hour patch that continuously releases pain medication.  


The goal right now is to find a pain medication that will help Tom be the most comfortable, and not cause him to experience complete confusion or seizures.  He is also on an anti-seizure medication to help with that, and an anti-anxiety to help calm so he can get much needed rest.  Throughout the day on Thursday, Tom was mostly unresponsive to questions, requests to squeeze a hand, etc... He made a few grumbling sounds, but that was it.  Very difficult to see the person you love so much be in this kind of position.


This morning Tom is doing much better.  He's been drinking water from a straw, nurse said he swallowed a pill this morning, ate a little pudding, and went to the bathroom.  It seems when he does wake from a nap, he asks for a drink of water, so this is great!!  He is still in a considerable (a lot) amount of pain, and a bit restless. 


Doc came in and explained that all pain medications have side effects that can make people confused and delusional, so we will just keep trying to ensure we've found something that makes Tom the most comfortable, and the least confused.  Tom did respond to the Doc that he knew he was in the hospital.  Tom said Yes that he knew who Doc was, and he knew who his mom, dad and I were.  He also did respond to Doc about some important questions to help us manage his health and comfort.  Tom will remain in the hospital through the weekend though.  


Jason Payne (Tom's nephew, 2 yrs younger than Tom) is traveling to WI from GA with his youngest child, daughter Ava born 4 days before Nathan.  Jason has planned to come this weekend for over a month now as a surprise for Tom's birthday.  I am so glad Jason has this opportunity to come see Tom right now, it is so important to be surrounded by family, love and support.  I am super excited for Nathan and Ava to finally meet and play together!  I have a feeling they will find a way to manipulate all of us with their charm and typical 2 year old antics.  Very much looking forward to taking LOTS of pictures of them together!


That's all the update I have for now.  Overall, Tom is doing better, but still very critical.  I thank you all SO much for your continued support, love, and prayers.   I appreciate all of your offers for help as well.  So much!  We have things under control for now and I have accepted help, which is difficult for me, but I'm doing it.  Thank you so much!!!!


Love,
Roxanne
xoxox