The Ups and Downs

 Tony got 2 platelet transfusions, a blood transfusion, several infusions of antibiotics and a CT scan of his gut today. In order to get the CT scan he had to drink a full liter of a special liquid that he really didn't like. So that was a rough part of the day for sure. He is still having some fevers, and he had to lay on some ice packs in the middle of the day, which he hated. His oxygen is also very low because of his partially collapsed lungs, so he has been on oxygen all day. He hasn't been able to eat today, his appetite is completely gone and he's been having problems with his gut. We're hoping to get results on the CT scan in the morning. The best news of the day is that for the first time in over a week, Tony is not feeling worse today than he did yesterday. We are hoping this means it will only be up from here, especially if they can figure out his stomach pain. He was also feeling well enough tonight that he was able to watch a couple episodes of the Big Bang Theory. Yesterday he could barely talk, so this is a significant improvement, and he is feeling hopeful. 

Hard Day

 Today has been a hard day. Tony is feeling really awful. He stopped using his phone completely yesterday, so I made several phone calls to his nurse throughout the night the check on him. He is still having some unexplained fevers. Thanks to some wonderful friends that took the boys last minute, I was able to come up to the hospital pretty early this morning. I got here just in time to talk to the doctor. They are testing him for a few bacteria's and virus's, but he also said the fevers could just be caused by the extreme amount of chemo he has had to endure. They decided to do a chest x-ray this morning. Fortunately, they were able to bring the machine to him instead of the other way around. 

The X-ray showed that there is some fluid in both his lungs, and the left side has partially collapsed. We've been told this is fairly common during extreme chemo treatment, because as your blood counts bottom out, you get less oxygen circulating, making it difficult to even stand. So laying down for 36 hours, and breathing shallowly because of the pain he is in caused his lung to partially collapse. 

He's severely neutropenic now, which makes him especially at risk for catching virus's so he is in a special room. You have to enter one room, and put on a blue robe with wrist cuffs, and sanitize your hands, and then you enter his pressurized room. 

They have had to give him platelets, a blood transfusion and several infusions of potassium today. He is having difficulty eating and has barely managed a few pieces of toast. Please keep the prayers flowing. He is in need of all of it today. We're hoping there will only be a few more of these extremely hard days and then his counts should come back up. 

Extra prayers

 Tony is really not feeling well today. He has had fevers that started last night. He had to sleep with some ice packs last night to try to bring the fever down after Tylenol didn't work. His platelets also got down dangerously low and they had to give him a platelet transfusion this morning so they could draw blood to check for anything that may be causing his fevers. Please give some extra prayers for him today. 

Last day of chemo (for this round)

 Tonight they hooked Tony up to day 7 of his 24 hour drip line chemo. The nurse told us his blood counts will continue to go down for the next 4-6 days before they start coming up again. He has been feeling pretty awful the last few days so he is looking forward to hopefully feeling a bit better in a week or so. He is also looking forward to being able to move around without his IV pole. 

5th day of chemo

 Today was Tony's 5th day of chemo. He no longer has to do the red devil, but he is still on the 24 drip line chemo. It's definitely starting to kick in. His blood counts are all very low and he is extremally tired. He is also already sick of doing sponge baths. It's his least favorite. They are going to let him shower tonight when they switch to the new bag of chemo. Just 2 more days of chemo, and then his counts will go even lower as its effects kick in. He will most likely be in the hospital a total of 4 weeks while his blood counts bottom out and then recover. His blood pressure was low all day and he just wanted to sleep. No pictures today. But Nicole, (from Tony's work family) set up a gofundme for us today to help us with all the medical costs. 

Tony's GoFundMe Link

We are just so grateful for everyone that has reached out. We've had cookies mailed to us, smoothies delivered to us, people running errands all over the place for us. We have an abundance of babysitters, and people who have come up with brilliant ideas of things that can keep Tony entertained for his long stay in the hospital. I've had help with decluttering the house and packing up as we prepare to move and so many more things! I am just absolutely touched by the outpouring of love we have received. Thank you!

Tony's Birthday

 Tony celebrated his 36th birthday in the hospital. The boys were able to come and see him.

The Family Life Nurse gave the boys some games they could play with him. 

He is also very grateful for all the wonderful gifts he received. Thank you everyone!

The new room they moved him too has 2 sets of doors you have to go through, and is pressurized. Unfortunately, the lights in the first room don't turn off, so they kept him up at night. A wonderful friend came up with this awesome solution so he could get some better sleep. 

And We're Back

I started this blog when I was pregnant with Jack. But it became a really great tool when Tony was going through his Cancer treatments back in 2012, to keep everyone that wanted to know updates, in the loop. Sometimes it can be challenging to say the same things over and over, especially when they are so emotionally difficult to talk about. So I will do my best to keep this blog updated with the latest things going on in Tony's treatment. 

So here is the timeline from the last little bit:

On Tuesday, February 8th, Tony went to see his oncologist. Usually he goes every 6 months, but he was having some back pain, lack of appetite, and getting a few bloody noses. So even though it had only been about 3 1/2 months since his last appointment (where his blood counts were all good), he decided to go in and see his Oncologist. At that appointment, he was told that his counts were all dangerously low. They scheduled him for a bone marrow biopsy the next day. If you want to know what they do in a biopsy, this is a good site to read. https://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/about/pac-20393117

They set up a follow up appointment with his oncologist for Tuesday, February 15th.

On Saturday, February 12, we checked his online lab results, and it informed us that his Leukemia had relapsed after 9 years of remission. Acute Myeloid Leukemia.  It was a tortuous few days while we waited to discuss a plan of action with his oncologist. 

During our appointment on Tuesday, the Oncologist let us know that we needed to follow a similar chemo/transplant regimen as we did back in 2012. His oncologist is still at Inova Fairfax and was able to get him in for his month long hospital stay the very next day. (7 days of chemo, with 3 weeks of recovery before he can come home). However, the oncologist no longer does transplants. So no matter what we decide, we won't be able to do the transplant at Inova. Right now we are researching doing the transplant at Huntsman Cancer Center in Salt Lake City, Utah. 

On Wednesday, they put in an IV line in his arm. And they got permissions from the doctors for all of the medications he will have to take. 

On Thursday, he was supposed to have a port (groshong catheter) put in. But no one told him not to eat breakfast, so he was not able to get the port on Thursday.

We were told that they would put the port in first thing Friday morning. So he didn't eat breakfast. Around ten, they told him he was scheduled for noon. Soon after they said they'd had an emergency and he had been pushed back. They ended up taking him in for surgery around 3:30/4.  They put the port in a lot lower than the last time he went through this. Tony says he feels like he's getting milked.

So after not being able to eat all day, I was able to bring up some food from Grille 13 (thank you Katie!) so we could have a date night. He had gotten back to his room only about thirty min before I got there. So he was still feeling a bit groggy from the anesthesia.

They started his chemo Friday night around 7. The first kind of chemo is nicknamed the "Red Devil." He will get this chemo around the same time every day for 3 days. 

The red chemo is sensitive to light so they have to put it in a bag while they administer it. Also this is a shoutout to the very kind nurses he has had so far. He has also had 2 of the same technicians as 9 years ago. So it is good to see some familiar faces. One guy that we especially love said something we thought was sweet, "Happy to have you. Sorry your here."

Then they hooked him up to the 24 hour slow drip chemo. He will get this chemo continuously for 7 days. 

Saturday afternoon they had to give him platelets because he still hadn't stopped oozing/bleeding from the port surgery. Joey (Tony's brother) says it looks more like they're giving him intravenous orange juice. The platelets are going to help his blood clot better, so it should stop the bleeding around his port. 

After they gave him the platelets they were finally able to take the IV out of his arm. So he's feeling like less of a borg now. 

We've done our best to set him up at the hospital. My neighbor Jamie picked up a unlimited data hotspot from the library for his room since the internet connection is terrible at the hospital. Tony got an early birthday present of a Fire Stick so he can watch the Olympics and Disney+, etc...  Norm and Deb got him a fuzzy blanket and Karen got him a very comfy pillow. And the treats have started pouring in. My SIL Amanda got him a digital picture frame that plays pictures of the kids. If you want to send any encouraging pictures to him, you just email them to Brittanyroring.062@photoshareframe.com and they will go straight to his picture frame. 

Thank you so much for all the love and support we have already received. We feel very loved and supported.