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 Tony had his groshong catheter taken out Tuesday. It was not an enjoyable experience. The first nurse tried to pull it out and couldn't, and 40 min later sent up a different nurse and it took her awhile to stretch out his skin enough to pull it out. Lots of pain and lots of blood, but he was happy to finally be free. They had towels ready to catch the blood, but it still soaked his hospital gown. 

Tony came home yesterday afternoon around 3. He was so happy to be home. He packed up a few boxes yesterday to get ready for our move. And he was able to have cheesy hashbrowns, and a chocolate croissant for breakfast this morning. (We're really going to miss Lidl). 

The moving pods were also delivered yesterday so we are very busy getting those filled.

On My Way

Tony had his bone marrow biopsy yesterday. They were able to do it the "good" way again this time, which he is very happy about. Results should take about 3 days. We're hoping for Thursday. 

He is getting his groshong catheter out today. They put in a peripheral line in his arm for them to use today and tomorrow. 

Doctor Orloff stopped in this morning and said everything on his blood counts looked really good today. They all jumped quite a bit, but his platelets and neutrophils specifically took a very large jump. He said that is a good indicator of a remission, so we are really hoping the biopsy results are positive. Because of the significant jump in his blood counts today, they are moving him to oral antibiotics today and are planning to send him home tomorrow! Yay!

We dropped Stacey off at the airport yesterday, and Tammy (Tony's mom) flew in. We made a pit stop at the cherry blossoms while they were both here. 

Less than a week until move day. John Lee (Tony's brother) flies in Thursday night to help us finish packing and load up the pods. 

Sunday, Bloody Sunday

Tony's blood counts were a bit higher this morning, so he is trending in the right direction. We are guessing he will not be able to come come until at least Tuesday. His bone marrow biopsy is tomorrow. 

Last night while the nurse was flushing his line, the cap blew off the groshong line. They've put in a temporary fix, since it's extremely dangerous to have an exposed line. The people that would normally fix this are not at the hospital today. So he will either get it fixed tomorrow or they may just pull out the groshong catheter all together since he's near the end of this round of treatments. 

Tony's mom flies in tomorrow morning and his sister, Stacey is flying back home tomorrow. Stacey has been extremely helpful with packing up the house. I was absolutely terrified to attempt to pack the boys rooms as their rooms have become an absolute disaster in the last month. Now they are completely cleaned out beside the beds, dressers and empty bookshelves. We move in 8 days, so it's so wonderful she was able to help so much with this. She was able to come up to the hospital to see Tony with me today, while a friend of mine watched the boys. 

There's Green in the Gown

 Yesterday marked one month of being in the hospital for Tony. Stacey is here and the boys are feeling a bit better so I was able to go up to the hospital to visit Tony for most of the day. He had some Irish Nachos from Grille 13 to celebrate St. Patrick's Day. If you are in Southern Maryland and haven't tried them yet, you should definitely remedy that. They are basically waffle fries with corned beef, bacon, gravy and nacho cheese. He wants everyone to know that his hospital gown has some green on it, so he is safe from pinchers. 

His appetite has been pretty low, which is frustrating him since he can finally eat solid food again. He is feeling pretty antsy to get back home, but his blood counts are all still very low. He didn't have to get any transfusions today besides his normal saline with potassium and his antibiotics. 

My aunt got him some really comfy pants that he is absolutely loving. Mixed with his "bald-man beanie," fluffy pillow and his soft blanket, everyone is doing their best to keep him as comfortable as possible in the hospital. I made him take off his beanie momentarily to show off his bald head today. Cody is a big fan of Tony's bald head. He thinks it looks so cool. Here, he can be seen perusing the hospital's extensive menu. Tonight, he settled on a classic peanut butter and jelly sandwich. 

Limbo

 We've been stuck in limbo the last few days. Originally, we were hoping Tony would come home today. Now it's looking more like sometime next week. At this point we are just waiting for his blood counts to come back up. He is back on solid food, but he is still needing platelet and blood transfusions almost daily. He will get another bone marrow biopsy on Monday. 

We had a bit of a setback at the Roring house as well. We had a stomach bug come through which has prevented me from being able to visit Tony. I'm trying to use the time to pack, but it is been an emotional few days. 

Lara and Matthew went home early Monday morning. And Tony's sister Stacey is flying in tonight to help us get through this next weekend. Tony's mom and brother are coming next week to help us in the final stages of the move. And then Tony and the boys will fly back to Utah with them on the 28th. And my little brother, my friend Shay and her mom are all coming out to help me drive the vehicles to Utah. 

I am just so grateful for everyone who has helped or reached out. Thank you again. 

Regular Food!!!

 They finally allowed Tony back onto a regular diet this morning. The first thing he ordered were some grapes. Then he had more grapes for lunch and a sandwich. He is very excited about this important step forward. His blood counts are keeping us on our toes. Sometimes they go up, and sometimes they go down. Once they really decide to go up, it should happen quickly. But for now the numbers are nominal. 

Tony is also excited about not having to do the pee pee dance all the time now. (direct quote) He is not intaking as many fluids intravenously, so now he doesn't have to get up a billion times at night to pee. 

The Kennedy's have been out here for almost 2 weeks helping run our household while I am up at the hospital with Tony. I absolutely would not have survived the last 2 weeks without them. Lara went above and beyond and even planned a birthday party for Jack. And Matthew took Jack to see a touring Broadway showing of Fiddler on the Roof. This week, they were supposed to be in the Bahamas, and the weekend before we were all supposed on a cruise together. But they decided to cancel all their vacation plans, and come and pick up all the pieces as I continuously fall apart. I am so grateful for Lara. She has truly held me and my kids together through these impossible weeks. She always seems to know exactly what I need before even I do. They are leaving tomorrow, and I am already looking forward to living within 20 minutes of each other again once we get to Utah. 

It's a Smoothie Kind of Day

Tony is very excited to announce that he can finally eat some soft solid food again. He is still a bit nervous to see how it goes, but he had some chicken noodle soup, some mashed potatoes and gravy and a smoothie.  They are trying to switch him to taking his medications by mouth instead of through the IV in hopes that he can come home next week. The potassium pills are definitely a pain, as they are huge and the second they touch water they start to dissolve. They're switching to pills one at a time, so hopefully by early next week he'll be taking the antibiotic in pill form. 

We celebrated Jack's birthday yesterday. He was very excited about it being his golden birthday. (10 on the 10th). We visited Tony and played a few board games, then he ordered lunch from Smash Burger, and then we had a "fruit" cake. He says it was a good birthday. 

Good News

 Tony's oncologist popped in today to discuss the next few weeks. We just got results back from his bone marrow biopsy and he is in remission. He reminded us that this remission is most likely temporary, but that it is still good news. We now have plans to fly to Utah on March 28th. And the house will go up on the market likely the next week. They will take out his groshong catheter right before he leaves this hospital so he can have more freedom before he starts his treatments at Huntsman Cancer Center. 

For now, we are still waiting for his blood counts to come up before he can be released from the hospital. We are hoping he will be able to come home sometime next week. He is still on a full clear liquids diet, and is attached to antibiotics and fluids at all times. He's still being given potassium each day as well. But  he's beginning to have more energy and is spending less and less time in the hospital bed. 

 Tony is feeling a bit better overall today, but they put him back on just a clear liquids diet for the next few days. He got one bag of platelets transfused today, and only 3 bags of potassium (he has had 4 every day for the last 5 days). So things appear to be looking up.

On another note, his hair started falling out today. He can just grab it in chunks from his head. So we decided to shave it. But we had a tiny bit of fun along the way. 

Also, we took pictures of the twins today wearing Thor and Loki shirts. For those that know them well, Cody has very similar personality traits to Thor, and Kevin has similar personality traits to Loki. They also happen to look a bit like the Asgard brothers. They also love each other more than they like each other. 

Worse Before it Got Better

 Late last night Tony ended up passing some very bloody stool. This, of course, put everyone in a bit of panic. Throughout the night and into the morning he was given 2 bags of platelets and 2 of blood. His potassium had also reached critical low levels so he got 4 bags of that and had to take 2 potassium supplements orally. He is still on antibiotics, and they put him back on fluids and told him not to eat or drink anything until the bleeding stopped. 

The bleeding seems to have stopped this afternoon/evening, so we are all breathing a sigh of relief. Tony has had very little pain today, which is a significant improvement, and he hasn't needed any anti nausea all day. He's been able to walk a lot of laps as well.

His 2 biggest complaints besides the bleeding bowels, are his very swollen feet, and the fact that this afternoon, when the tech needed to take his blood, she failed in 2 different spots before she had to grab someone else to poke him a 3rd time. It was already the 3rd time today they had to take blood, so it certainly wasn't how he wanted that to go. 

An update from the homefront. We had a wonderful group of people from church come to the house this morning to help get the yard cleaned up. My expectations were greatly exceeded and I feel like a huge weight has been lifted. I can't begin to thank everyone enough for all of the help we have received. 

A Better Way

 I will start with the morning. Tony did 8 laps (1/2 a mile) at 1 a.m. because he couldn't fall back to sleep after they took his blood this morning. And he did those laps without his oxygen line. His oxygen has stayed in the 90s all day without the line. So that's a significant improvement. We got Tony's blood results back and all his counts are already bouncing back and coming up on their own. This is a terrific sign, so both Tony and I were very excited. His potassium is still low so he had to get another 4 bags of that and more antibiotics to fight what's happening in his gut. Unfortunately, because his platelets are so low, they can't do any of the decompressing treatments they would usually do in this situation with the colitis. But they did take another X-ray of his gut this morning and it showed slight improvement. So that is promising. 

Today was a dreaded day because it is bone marrow biopsy day. They made us do his sponge bath right before they came up to get him, and he was really just not looking forward to the terrible procedure. Turns out, there is a better way to do bone marrow biopsies and we discovered it today. We are both equally happy that there is a better option, and really annoyed that no one told us this before. With this option, they give him partial anesthesia, then they use a CT to see where the best place to put the needle would be, and then they draw out the marrow. He was partially awake, but he doesn't remember anything from it. The tech said we just have to voice in the future that he wants this specific kind of Bone Marrow biopsy, which we will obviously do. But we are upset no one had ever mentioned this as a potential option in the past. He's had 6 biopsies done "the old fashioned way." We will find out results from this biopsy on Monday and then they'll do another one in 2 weeks to find out if this chemo session has put him into a temporary remission. (Bone marrow transplant is the only "cure").

He was a bit silly after he came up from the biopsy. We asked if he could get himself over to his bed from the transport bed. He said yes, and then immediately started snoring. We got him moved over to sitting on the bed, and he was talking about never doing a biopsy the old way ever again, and then he fell asleep sitting up. Then he moved to the chair and decided he wanted to try to eat a LornaDoone. He was struggling to open the package so I asked him if he needed help. He said "you think I can't ... open...my...........Doodles." I finally convinced him to get into bed, and he immediately grabbed his phone and his reading glasses. I told him I didn't think it was a good time to text anyone. But he immediately fell asleep, so crisis averted. 

The rest of the day has been focused on finding something Tony can eat or drink that doesn't hurt him. His intestines are distended and immobilized and every option they have given him in the hospital has whey in it and it upsets his digestive system. Our friend Anne offered to grab him some vegan protein shake options so he can start intaking some nutrients today. (The stuff they had him drinking here has this as its first 3 ingredients: sugar, corn syrup solids and whey protein. All 3 of those things are not recommended for an upset gut). 

Overall it's been a better day. His feet are still very swollen, and so is his stomach/gut, but he hasn't been hooked to any IVs for the second half of the day, and the anesthesia granted him a really good nap (both in his bed and in his chair).

Today is day 14, so he should be halfway through it, and he appears to be through the worst of it.  

The day before the Marrow

 Tony had one oxygen panic attack in the middle of the night last. But he had no fevers. His potassium continues to be low, so he had to take it orally and intravenously.  He is also taking several antibiotics to try and combat whatever is going on in his gut. 

They took an x-ray of his belly today and it showed that his bowels are immobilized and enlarged. His oncologist got the GI doctors involved, but they said their hands are tied because his platelets are too low to do any kind of minor procedures or surgeries. So for now, it's just antibiotics. And they told him not to eat anything.

Tomorrow, he is supposed to get a bone marrow biopsy done, but if his gut is worse tomorrow, they may have to put it off a couple days. He's getting a platelet transfusion and a blood transfusion in the morning to prepare for the biopsy. 

On the Up and Up

 If you haven't head the song Up and Up by Relient K, I suggest looking it up. 

Tony is starting to do better. He has been awake all day today and did quite a few laps around the oncology floor. He was able to take a shower, and didn't end up needing any transfusions other than some antibiotics and potassium. They took another chest x-ray today since he's still been struggling with breathing, and the Xray did show some improvement in his lungs. No fevers today and his oxygen stayed above 90% all day. (He is still on oxygen). 

They take blood every morning, and they aren't supposed to take it from his groshong catheter, so they poke him every morning. With his platelets so low, that has left him pretty bruised up. 

They are constantly giving him fluids, which has made his feet swell up significantly which has been a frustrating part of the day. 

He was able to drink an Ensure today, which is a significant improvement from the last few days of zero food. 

We are confident he is on the way up now. So we're breathing a bit easier today. 

So Oxygen is important...

 Tony has had a few significant improvements, giving us hope that it should be mostly up from here.

The ups: 

• Tony walked 8 laps today throughout the day (1/2 mile). 
• He didn't have to get platelets or a blood transfusion today.
• No fever today!
• No vomiting today. 

The Downs:

• Tony is still on Oxygen. He had a bit of a scare tonight when his oxygen levels dropped down to 80 even though he was on a high level in the oxygen line. He is supposed to be using this breathing exercise machine to try and re-inflate his lungs. But tonight he overdid it while using it, and he struggled to breathe for awhile after. It was really scary. 
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• We got results from the CT scan and he has colitis. They gave him 2 different IV antibiotics today to try and help with that. His gut is still causing him quite a bit of pain and diarrhea. 
• He still can't stomach anything other than water, so it was yet another day of not eating anything.
• His is still on a constant IV, and has been getting a lot of IV potassium each day. 
• It's really hard to sleep at night in hospitals. 
• Sponge baths (daily/mandatory) are not his favorite thing. 

Tony was awake and communicating a lot more today than the last few days. He is feeling a lot of hope that things are starting to look up but he is still frustrated by his lungs and his gut not working properly and causing him so many additional struggles.