Improving Fast

Tony is improving fast at the hospital. His CMV numbers are going down. The infectious disease doctor said he has seen numbers in the hundred of thousands. Tony's are about 564, so that is really good. The symptoms of the C. diff are also subsiding now that they have him on the stronger medicine. They are just trying to get his nausea under control so that he can keep more food down. They are considering sending him home tomorrow and just having a nurse come to our house daily to give him the anti-viral for the CMV. We are hopeful!

There and Back Again...

We received a call Monday night around 7 from one of Tony's doctors. He informed us that Tony's bronchoscopy had come back positive for CMV pneumonia and that we would need to go to the hospital immediately for treatment. Unfortunately, the oncology floor had no available rooms, so the doctor told us to go to the Emergency Room and they would find us a room. We went to the ER and I was very uncomfortable because there were a ton of people and I knew Tony's chances of getting yet one more illness was increased. Tony wore a mask while we waited to get called back. When we finally got called back, then insisted on doing all of the tests that Tony already has had done...several times. He had to get an xray and an EKG, and blood tests. It was frustrating because we already knew what was wrong and what he needed as treatment. A room up in the oncology unit finally opened up around 1 in the morning. We got him all settled and he finally got the medication he needed. A special thanks goes out to the Glenn's who so wonderfully stayed at our apartment and watched Jack (he was sleeping) until I was able to come home at 1:30. 

On a positive note, the new oncology floor is finished so Tony is in a brand new room. It is super nice!

CMV is something that a huge percent of the US population already has. Our bodies just fight it off. But because Tony's immune system is down, his body is not able to fight it off. They medicine they give him only stops it from getting worse. They don't have anything to get rid of it completely. That is why it was so important we got him to the hospital to begin the treatment. (I have to remember that when I feel frustrated about the long night in the ER. Tony needs sleep to get better too). So the medicine will stop it from getting worse as his body slowly tries to fight the virus. 

He has had a score of doctors coming in and out of his room. He has a doctor assigned to him from the ER. He has his regular oncology doctors, and he has an Infectious Diseases doctor. This morning he had several "almost" doctors come in and "practice" on him, but he was really tired and didn't want to answer the same questions over and over and over, so hopefully that won't happen again. 

We are not sure when Tony will be able to come home again. (the ER doctor says one thing and the oncology doctor is saying something else). But we are really hoping that they can get him feeling better. He is pretty miserable with all the symptoms from both the CMV pneumonia and the C. Difficile (which effects his digestive tract. It is what is causing all of his nausea as well). 

To end this update, I would just like to ask for everyone to pray for Tony. This has been such a long road of feeling sick, and he needs the extra strength you all can give him. Thank you always for all of your love and support. 

A Superhero's Breakfast

Tony has been so tough through this whole thing and I thought he deserved a superhero breakfast this morning. Tony.....you are Superman!

And Jack couldn't decided between his push toys this morning, so he decided to push both.

The Bronchoscopy

So...this has been quite the thing. We were originally told that the procedure was yesterday. So, we showed up at the hospital after rescheduling our whole day and getting a babysitter for Jack. Then the hospital told us that we had the day wrong. We were not exactly thrilled about that and found out it had been a miscommunication between the doctor's office and the hospital. But alas, we carry on. Luckily, Autumn is awesome and came back to watch Jack today. We got to the hospital at 10:30. They checked us in and then we waited (normal hospital procedure. Haha ). They brought us back and started filling Tony's info into the computer and making him sign all the documents. They explained what they would be doing and ok'd the sedation. (They took him to what they call "The Twilight Zone". Haha. He was not fully out, but still pretty out of it).  

They started by making him breathe through this thing. It numbing stuff for his throat. (He had to not eat or drink anything for 12 hours before, so by this point his throat felt pretty dry, and this did not help). 

After that they put this stuff up his nose that then drained down the back of his throat. It was a more powerful numbing solvent that tasted AWFUL! Tony almost threw up (but he didn't really have anything in his tummy TO throw up). Then they asked me to wait out in the lobby while they did the procedure. This was the doctor's notes on the procedure:

The bronchoscope was passed through the oral cavity; it was extended to the pharynx, larynx, trachea, right bronchial tree, and left bronchial tree. The views were excellent. The patient's tolerance of the procedure was good.

Usually they go through the nasal cavity, but the opening wasn't quite big enough. The tube that they stick down his throat is a little bit bigger than a pen. They went between the vocal chords and into both sides of the lung. They found some "secretions" in both lungs and suctioned them out (to be tested). They also sprayed some saline solution and sucked it out. Then they took a little brush and to another little sample in his lungs. Luckily, they did not have to cut out a piece of his lung, so it wasn't a full biopsy. They had enough stuff just from the secretions to determine what is causing the pneumonia. Once they started the actual procedure it only took 26 minutes.  

When I was able to come back into the room, Tony was still pretty out of it. The thing around his head is actually his oxygen level tester. His hands were too cold, so the machine wasn't getting an accurate reading. They had to give him oxygen through his nose because he was partially sedated and not breathing deeply enough on his own. They also had him hooked to a heart monitor. After the procedure was over his heart did a weird beat. The machine starting freaking out and then printed the abnormality.  The doctor was worried that it would happen again, so they decided to keep him for a while and call down a cardiologist. They did an EKG and a blood test. Luckily, everything came back normal so they let us take him home. (They were considering keeping him overnight). He also was still not getting enough oxygen on his own, so they had to slowly taper off the oxygen until he was awake enough to remember to breathe deeply. So, they let us go and we got home just before 3. Tony then napped for most of the day (after drinking quite a bit of water). He wasn't allowed to eat or drink anything until 2 hours after the procedure, which was actually before we even got home. 

We will have results from the test in 3 to 14 days. 

And these are the pictures of his lungs. They look kind of gross. If you are easily grossed out, then don't scroll down. 

The picture above is of his vocal chords and going into his trachea. The vocal chords are the white strips on either side. (You can see the one on the left clearly).

This is in his trachea and showing the right and left bronchial trees. (The right and left lung).

This is in his right lung. You can see how many times it branches. The branches get smaller and smaller and smaller. It is actually really cool. I have never seen in a lung like this before. 

Again, sorry if that grossed anyone out.

In other news, we got word back from a different test they did last week. It came back positive for c. difficile. It is a bacterium that effects the digestive tract. It is the reason why he has been so nauseous and has no appetite. You are most likely to get this if you are in the hospital for a long period of time, have a weakened immune system, or are on antibiotics for a long period of time. So.....check, check and check. But now that we know he has it, they prescribed him a medicine to treat it, and hopefully get rid of it. It happens because the natural bacteria that usually fight this sort of bacterium in his body are gone due to all the antibiotics he has had to take for....pretty much everything. 

My Little Man

                          We woke up to snow on the ground yesterday. Jack loves to stand at the window and watch it fall. (He bangs on the window panes).

Two days ago I let Jack feed himself completely by himself. He usually eats the finger foods on his own, but I control everything that involves a spoon. But it was almost bath time, so I stripped him down to a diaper and gave him all the control. He picked up on it really quick. There was definitely still a mess, but his bib caught all of it. (Thanks for the awesome bib Channa). He would dip the spoon, and then stick it in his mouth. (He always got too much on the spoon, which is why half of it ended up down his bib.

One of Jack's favorite things is to be dropped onto the bean bag. And we think it's hilarious because his hair gets super static-y. His is pretty good at getting himself off the bean bag too. He did a pretty great summersault yesterday. Definitely an acrobat. 

And this is Jack's new favorite way to use his pink push toy. I was quite impressed he figured it out all on his own. Close enough, I guess. Haha. What a kid!

Not Done Yet

Tony had a CT scan yesterday to check on the pneumonia. They said it looks better in some places, but worse in others. So, tomorrow they will be doing a biopsy of his lungs to figure out exactly what is going on and so that they know exactly how to fix it. The biopsy is called a Bronchoscopy and is a 2 hour procedure where they insert a small tube through his nose and go into his lung and retrieve a small piece of his lung. Then they will be able to tell what exactly is going on. If it is a fungus, they will know exactly what kind of fungus it is and be able to treat it better. We are certainly not excited about the procedure, but we are excited that he will hopefully begin to get better. He is sick of coughing. Mostly, he is just sick of being sick. It is no fun, and it has been a long road for him. 

Jack has been a trooper and has adjusted his schedule to fit around doctors appointments and everything else. He is such a great kid. Also, he can now walk with me only holding onto one of his hands. So I think he is less than a week from walking on his own. Let the craziness begin. 

Pneumonia Update

Tony is starting to feel a little bit better. The antibiotics seem to be working. He has to go to the doctor's office every day to get the antibiotics through an IV. That way they know exactly how much he is getting. (They don't want him to throw up a pill and then not now if he got it or not). He definitely still has a cough, but he can tell that it is beginning to clear up. So we are grateful for that. Keep him in your prayers. Thank you!

DC with John Lee

We did a quick DC tour with John Lee (Tony's awesome brother who flew out to visit us over the long weekend) while Tony was getting IV meds at the Doctors office. We did the quick loop of Washington Monument, Vietnam Memorial, Lincoln Memorial, WW2 Memorial, and Korean War Memorial. Then we hopped over to the Museum of Natural History for about 15 min. (Not long enough, but it gave John Lee a taste of it for when they come back one day). This picture shows off the awesome reflection pool that they finally finished. (When we moved out the reflection pool was under construction. Now it is done and it is awesome. We did not realize how long it is until we walked the length of it). 

There were Parks Patrolmen on horseback by the Lincoln memorial. They were super super nice and let Jack pet their horse. That was a new experience for Jack. He was fascinated.

Dismount

So Jack loves "dismounting" off of the guest bed in his room. He usually does a summersault, but of course, he refused to do the full summersault for the camera. This is close enough. I uploaded a longer video to this link:

http://youtu.be/wH62lcsatIY

Favorite Lasagna

We had all orange colored food tonight. Favorite Lasagna (a term deemed by my family growing up for the most delicious pasta out there), cooked carrots, and clementines. As you can see in the picture, there are no more clementines. Those are Jack's favorite. But tonight, it seems the lasagna tied for first. One he finished his known favorite (the clementines), he started in on the lasagna, (saving the veggies for last like any little boy). He loved it! It was so fun to watch him eat it. And all in all, he didn't get too extremely messy as I had first predicted. 

Mmmm, mmmm....lick your fingers good... Thanks for such a compliment on my cooking Jack :)

Thrift Store Fun

We got some Christmas money from Grandma Lewis and decided to spend some of it at the thrift store. Here is how Jack decided to spend his share ($8)...

The firetruck can be used as just a plain ol' firetruck, or converted into a fun thing for Jack to ride. It is also great as a push toy. Jack's favorite part is the buttons on the steering wheel that honk and make motor sounds.

And of course, the dump truck is another favorite. He loves anything with big wheels, and this truck fits the bill. He pushes it all around the house. Our little boy is in Boy Heaven!

We would like to thank the pink push toy for its devoted service, but I think the trucks win over for our Jack man.

P as in Pneumonia

Tony has had a terrible cough that he has not been able to beat. The doctors decided to do a CT scan to get a better idea of what was going on. It turns out he has pneumonia in both of his lungs. Fortunately it was caught pretty early and there is only a little fluid in each lung. They are putting him on some strong antibiotics and are pretty certain that it will clear up soon. If not, then they will do a procedure that looks for fungus infection (instead of bacteria infection). They made Tony do a breathing test today to see how much the pneumonia was inhibiting him, and he passed with flying colors. He has quite the lung capacity though, so I think that the pneumonia is really just making him more like the rest of the world. (They gave Tony a breathing tester to take home after his first round in the hospital and both my mom and I tried it out and we totally failed. Tony has the highest capacity on the tester...at all times. Anyway, we are hoping these antibiotics work because Tony is sick and tired...of being sick and tired. The cough is so strong it often makes him vomit, and that's just no fun. Please continue your prayers and positive vibes. Love you all!

Backflips

Jack absolutely loves to do back flips off of my knees. He gets a huge grin and just throws himself backwards. (Don't worry, I twist my arms so that his arms don't get twisted). He gave everyone quite the scare in church today when he backflipped off my knees. He landed on his feet and just giggled. He puts on quite the show.

http://youtu.be/927IdyFTSw0

No More Pictures!

Jack was done with me taking pictures today. 

Pink Push Toy

I decided Jack needed something besides boxes to push around, and the Hamiltons were giving away their push toy....so....I decided it was ok for Jack to have a pink push toy...for a couple weeks before he learns to walk. And boy does he love it. He giggles every time he stands up to it to start walking. So here is a video of him pushing his pink push toy. (It is harder for him to steer because he would have to be holding onto the front of the bike). 

http://youtu.be/M5oXfP6v5gs

Cruising!

http://youtu.be/HYNsgv0VX7c

Jack is cruising around the house using anything he can find to steady him. To his credit, he is fairly good at steering and figuring out the angle he needs to walk in to get through the whole apartment. I keep finding boxes all over the house.

The Batmen

I was cleaning out Jack's closet yesterday and came across a box labeled 9-12 mo. Well, since Jack is 10 months old now, I thought I should probably switch out his clothes since they are all still 6 month old clothes and are getting a little tight. So Jack has a whole new wardrobe now (good thing I decided to clean out the closet). Among that awesome box, was this amazing shirt. Now both my boys are Batman. Doesn't get much better than that.

Pills, pills, pills

Tony feels like an old man because he has to take so many pills several times per day. This was his second round of pill taking today. Still one more to go...

2nd Christmas

We celebrated Christmas this morning. Jack was so excited that he finally got to crawl all over the presents. This is a picture of him clapping.  

Jack wasn't super aggressive about ripping presents open, but he really liked them once they were open. He is getting really big into books. He loves them, so he was really excited. 

And we had a very Star Trekkie Christmas complete with Star Trek: Next Generation Pez and Star Trek Catan. Essentially, we are nerds....and proud! I told Tony we should put the pez on the mantle piece. Haha. 

Home

Words aren't needed/can't explain how happy we are to have Tony home!

What's Inside a Bean Bag Chair?

Ever wonder what is inside a bean bag chair? A big ol' mess, that's what. Haha. We decided to wash the cover of the chair so that Tony can use it cause he loves it. And there was A LOT of foam stuff. It made quite the mess. But it was kind of a fun experience and definitely something we will always remember. 

What's Next?

So with those unfamiliar with the "aftermath" of a bone marrow transplant, (I was unfamiliar until recently) I will fill you in. 100 days after his transplant they will do another bone marrow biopsy (where they dig a piece of his bone out of his hip and pull some of the marrow out). This will help them to see if the cancer is all of the way gone. If he still has no sign of Graft Vs. Host disease (where the new immune system attacks him instead of helping him), then they will begin to taper of the Prograf. Tapering is very slow and usually takes about 3 months if nothing goes wrong. So, Tony will be home for at least the next 6 months. After the prograf has been tapered, he will be able to return to work, eat out, and go to the movies again. Hooray! They told us that it can take up to 2 years for Graft vs. host to show up. Occasionally GVH can show up and if that happens, they will just put him back on the Prograf until the immune system accepts him again. But pretty much, as long as we are careful with what we feed him (I have a packed that is very specific on what he can and cannot eat and how to prepare everything else), and we make sure he doesn't come into contact with any sick people, we are pretty much in the clear. He did it! Tony jokes about making a framing a To-Do/Bucket list that like: Skydive: check, Survive Cancer: check....... He has had such a wonderful attitude through this whole ordeal, and once again, we thank all of you for your wonderful support.

Tomorrow, Tomorrow, He Comes Home, Tomorrow!

Tomorrow is the day! Tony will have stayed in the hospital for exactly 5 weeks. He is more than ready to come home. 

Originally, they said we had to wait until his platelet count reached 50 to take his pic line out. But this morning, Dr. Reid gave the nurse permission to take it out anyway. (His platelet count was at 39. So his awesome nurse Maurey, took it out and applied pressure on his arm for a full 10 min to make sure the bleeding stopped. That, my friends, is a dedicated nurse. She also was super awesome and put the pic line in a bag so that we can keep it. Tony was pretty excited about that. 

Tony has been coughing quite a bit. They think it might be his body trying to get rid of all the extra dead skin that is in his throat from all of the sores. It is making him pretty miserable though. It makes him nauseous when he starts coughing too hard. He is has been plagued by headaches. But these are all part of the recovery, and none of it is too bad to not send him home. 

He still has to take a million pills when he comes home. The prograph (that keeps his new immune system suppressed) is now in pill form, and it lowers his magnesium level, so he also has to take magnesium by pill.   

Good Quotes

We really liked several of the quotes that were on the poster that Tony's work made for him, so we would like to share them with all of you:

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."

by Elizabeth Kubler Ros

"Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.""

by Mary Anne Radmacher

Attitude = difference between ordeal and adventure

We may end up framing some of these. Pretty good, eh?

No Longer Assimilated into the Borg

As of today, Tony is free from his IV (at all times except when he needs magnesium which is every couple of days). They took him off of the IV prograph, and he is now taking a pill. He will be on the prograph (immune suppressant) for at least 6 months. They have also been able to stop the extreme antibiotics through his IV because his counts are sufficiently high. His release date from the hospital is tentatively set for Monday, the 7th. We are super excited. They aren't able to pull the pic line out yet because his platelets are still to low, but they will hopefully come up in the next few days so that he won't have to have it poking out of his arm anymore. He was in good spirits today and is looking forward to coming home soon. He almost feels like he is back to semi-normal (cancer normal, not a year ago normal). His boss from Ernst & Young visited him today and brought a wicked sweet poster from his fellow employees. He loved it! I will have to take a picture of it. He sure misses his buddies down at the E&Y. 

Silly Faces and Dancing

If you want to see Jack dancing and playing his maraca click the clip below:

http://youtu.be/Qm7IPB23uHY

http://youtu.be/eYSZvg_jcfM

Jack loves to dance. He especially loves his lion, but he will dance when we sing or any of his toys sing. But his best dancing is done when I am doing zumba. He is definitely musically inclined. 

The other thing our little Jack man has been doing is pulling a silly face every time he sees a camera flash. He has been doing this for a few weeks now and I think it is hilarious!

This is the first picture I took, so it was before he saw the flash. Every picture after that looks just like these:

That's my rock star. He just cracks me up every day. I am a huge Jack fan. I should get his autograph now before he gets super famous. 

DC with Grandma

We went to see the trains again in DC but this time we got to bring Grandma Roring. Here is Jack looking at the mermaid and the dragon house. This was his 3rd time seeing the trains and he is fascinated every time. He loves it.

Here is Jack and Grandma in front of the Capitol building made of plant materials.

This was how Jack looked as we walked around the Tidal Basin and saw the FDR monument and the Martin Luther King Jr. Monument. Super bundled up from the nippy air. We had a good time and were extremely lucky with parking spots. 

2013

First of all, I would like to apologize to the number 13. I am sorry for anything bad I have ever said about you. Please forgive me and be lucky for us. 

We had sparkling peach/grape juice for our midnight celebration. We played phase 10 and watched a movie to bring us into the new year. 

The awesome nurse brought us hats and took a picture for us. Here's to 2013! A year without cancer!

In an update, the doctors are predicting that Tony will come home this next Monday! Hooray!

Matchy Matchy

We were so excited to take Jack to church in his new thrift store sunday outfit. Doesn't he look like such a stud!

And then when we got to church, Walden had the exact same outfit on. Totally unplanned and totally awesome. I mean, what are the chances of both of them in bright blue? Pretty sweet, right? Best friends already. They even dress the same. They probably called each other....