My Second Transplant - Day 153

Hello everyone!  It’s Jon! I’m back to being able to type. Still a little shaky, and it makes it slower to type, but I can do it now!

I have been home now for a little over a week, and it is so nice!  Although they treat me really well at the hospital, it’s just not the same as being home. I have been able to walk around the house without a walker now for three days, and even get up off of chairs that I never thought I could do before I came home. It seems like I can do more and more every day. I am still trying to get my physical therapy set up. It is turning out to be more difficult than I thought it would be. But isn’t that how it always seems to be.

We got word that my blood shows that all of my donor chimerisms (my blood cells that had Leukemia) are 100% that of my donor! This means that the donor cells have taken over my body.  As good as this sounds, we are still waiting for a bone marrow biopsy in a few weeks to verify the same information.  The bone marrow test is more sensitive.

We also have been thrown for a loop on our insurance. We have been on Cobra since I was let go from Group Publishing last year. That means that I still get the same insurance that Group employees have, but I have to pay both parts of the premium, plus a 2% premium for the company managing the Cobra. (Gotta pay the piper too:)  They are changing over to Kaiser Permanente in 2013. My doctors are not in network for Kaiser so it complicates things. They are working with me, and should be able to let me continue my care with Dr. McSweeney. We were told that they refer the transplants to CBCI anyways, so we saved them a step! We are still up in the air for a second transplant, since I am doing so well and we received the news about the chimerisms.

We are planning on taking Hayden to see Santa soon. He seems so excited when we talk about Santa, and when we see him on TV. I hope that he is that excited when he is sitting on his lap. We are going to strategize the timing with his nap! Last year he just did not know what to think, but was calm.

We would like to thank all of you that have donated to us. We really do appreciate it!

So many people have been so generous.  We are so grateful.  We were able this week to buy Hayden his first pair of shoes, they are black and green tennis shoes. We have also had people ask us how they can help. If you are buying Christmas presents (or anything else) from Amazon use this link, http://www.amazon.com/?&tag=jonsfight-20 with no cost to you! (Click the link, then add item(s) to your cart). This allows us to get credit towards things like diapers and wipes! Thanks!

We are also running another silent auction on facebook. Come over to the new Jons Fight facebook page, like us and then go to the photo album, Silent Auction.  You can also use this link, https://www.facebook.com/media/set/?set=a.105476432957004.11864.104707329700581&type=3. Bid on the item by placing your bid in the comment section of that particular photo.  On Saturday, December 22 at noon we will close the bidding and contact the winners.  We are going to be in Denver on Saturday so we are more than happy to deliver items, or we can deliver on Sunday to Northern Colorado! We have 56 great items that you can bid on for Christmas!

Thank you also to everyone who reads my blog. It is great to get all of your cards and feel the love and support that you are all sending my way.  We unfortunately have no way of adding a comment section to this blog, so that is why we created the facebook page, but I am more than happy to hear from you on my email, noh@mac.com.

Please continue to pray for us, as we are transitioning to a new insurance through COBRA and we are not sure what this will change, and also for all of us to stay healthy and get through this cold and flu season without harm for the second transplant.

And remember, as I always say, Life is still good, even with a few bumps in the road!

-Jon

My Second Transplant - Day 144

Hello everyone!  Its Laura again.  Jon is still not updating the blog because his hands are so shaky.

HERE ARE WAYS TO HELP US... If you are buying Christmas presents (or anything else) from Amazon use this link, http://www.amazon.com/?&tag=jonsfight-20 with no cost to you!  (Click the link, then add item(s) to your cart).  This allows us to get credit for things like diapers and wipes! Thanks!

On Saturday we had a very successful silent auction for our family. Jon and I want to thank everyone who not only attended the silent auction but also bid on items.  We are very grateful for your support.  We made over $2000 towards our $5000 deductible, although I do have to admit we are going to use a few of the dollars to buy Hayden some Christmas presents. We are thinking of putting the rest of the silent auction items that did not sell online ASAP so that more people have a chance to bid on them and so that you may have the items before Christmas.  I am more than happy to deliver them to you!  I will post the link very soon!

Thank you also to those of you who have made an additional donation. We are very humbled by the generosity of others. 

Just to update everyone... Jon did not get to come home on Friday for the silent auction because he was just not ready.  He is still pushing really hard to recover from the high dose of steroids, but it was a lot for his body to deal with.  He is making amazing strides towards coming home though.  We do miss him.  I have been home since Thursday and it does seem so different to be here without him, but I do enjoy being with Hayden for a little while and teaching him about Christmas.

Jons White Count (immune system) has been dropping from one of the medications that he is taking for the CMV virus.  As much as we are bothered by this, they are telling us that it’s for the best.  Sometimes you just have to roll the dice and hurt one thing to save another.  In this case, it is his immune system being compromised at the moment to save his lungs and get over the pneumonia and distress that caused the bleeding.

From what we are hearing, when he does come home we will have a long road ahead of us.  He is working on walking again.  I think he is doing tremendously well in the short time that he has been trying.  We have a wheel chair and a walker for him to get used to.  We were so excited to hear that MCR (Medical Center of the Rockies) in Loveland will possibly be providing the physical therapy that he needs when he comes home.  Since it is only 15-20 minutes from our home this should make it much easier on us.

The last couple of weeks had definitely thrown me for a loop.  I am usually not as weepy or grumpy as many of you have seen lately and I am so sorry if I came across that way to anyone.  We do love all of you and are so grateful for the support we have been receiving.  This was the first time since the diagnosis that I felt I was without my partner and love of my life for 5 ½ days and I am so happy that we can communicate again.  Reality definitely sets in when something like this happens. 

Thank you to everyone also who reads Jon’s blog.  I know that he feels the love from everyone and is happy about it. We unfortunately have no way of adding a comment section to this blog but he is more than happy to hear from you on either his facebook page, or his email, noh@mac.com.

Please continue to pray for us, as we are transitioning to a new insurance through COBRA and we are not sure what this will change, and also for Jon to stay healthy and get through this cold and flu season without harm for the second transplant.

And remember, as Jon always says, "Life is still good, even with a few bumps in the road!"

Laura

My Second Transplant - Day 134

Hello everyone.  Its Laura.  I am updating Jon’s blog since he is unable to.

Thank you so much for all of your love and support so far.  We are having a silent auction to help pay our enormous medical bills that we have coming in.  The information is listed both above. Sorry for the short notice, things have not only been crazy around here but we had several people back out. Fortunately we do have things together and we are ready to get this silent auction going!  I have collected a lot of things, thanks to the generous companies and people who have donated. Please start spreading the word! If you are unable to come to the auction but would like to donate, we do have a donation button at the top of this page, you can send your payment directly to the JWagner fund, c/o US Bank, 301 E Horsetooth Road, Fort Collins, CO 80525 or visit www.jwagnerfund.com. If you are on facebook and are coming, please go to the link on my page and let us know! I am very excited to see all of you!

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Now onto my Jon.  As many of you have heard Jon came off the ventilator on Sunday around 3:00pm.  He did so extremely well on the vent that it was a breeze to get him off of it! He has had many steroids to fight off the damage to his lungs from the CMV virus, so he unfortunately had a lot of muscle mass disappear (and he was only on the vent for 5 1/2 days - amazing how fast it occurs).  So, when he first woke up he could not speak, raise his arms or legs, or move his head.  In the last week he has made miraculous strides towards his recovery.  As I have said before he is a fighter!

At the beginning of this week we thought it was going to be a long road of healing.  They were telling us that he would have several weeks of recovery in the ICU, then move to Spaulding Recovery for rehab for his muscles. We were looking at 6-8 weeks for the recovery process. But not now!!  Jon has pushed through his physical therapy everyday. By Monday afternoon he could raise his arms about 6 inches, by Tuesday he could raise his arms to his mouth and was alert enough to check his phone the first time and by Wednesday he could feed himself (sort of).  On Thursday he sat in a chair for the first time for almost an hour. It was amazing - even the doctors thought so!!  On Friday he was doing great.  He fed himself, played on his phone and starting watching TV.  On Saturday he pulled himself up and also took 19 steps!! He is trying really hard.  He really wants to be home for Christmas, and it looks like he will be! He has been cleared of Pneumonia and the CMV virus is almost gone. 

We are taking it one day at a time...  but so far it is going much better than expected.  His doctor said today that he is on a path they hope all of their patients could be on.

He is still going to have another transplant, but of course that has been delayed until he is strong enough to get through it. I am so proud of his endurance, strength and determination to get back to himself.

We had the pleasure this week of seeing Hayden - well Jon was on facetime with him, but he was at the hospital with my parents and Bill.  He was so excited to see the big “twee” and the moo (reindeer) figurine. He is doing such a good job walking, even though he does not bend his knees and he walks on his tippy toes! It was so great to see him, its been so hard to be away from him. We are very lucky that we have a loving family helping us out!

As Jon would say... “remember if you think life is good it will be!”

-Laura

My Second Transplant - Day 127

Sometimes you just meet someone that is so wonderful, someone who brightens your day... I was lucky enough to marry him.

Hello everyone.  Its Laura.  I am updating Jon’s blog since he is unable to.

I have never really thought about my lungs before.  They were always just something that was there.  Oh sure an occasional cold or flu may cause some discomfort and you realize for a moment while you are coughing - wow there they are.  But have you ever thought about it on a deeper level?  Just think about all of the things that need to happen in order for air to reach your body. I have been thinking a lot about that the last few days.  As I sit here and hear the machine pump up and down pushing valuable Oxygen and pressure into Jons lungs over and over again, I begin to realize how many times a day I take a breath and do not think anything of it. Its amazing how technology has saved so many lives.  Thank goodness someone developed a machine that is saving my husbands life.

Jon is doing much better.  He is getting stronger everyday.  They are saying that his lungs are improving and that his breathing capabilities are getting better too!  He is now on only 40% oxygen from the vent and 7.5 for pressure!! (He started at 92% Oxygen and 20 pressure).  His parents were here all day with him.  I am so grateful he had people around him that he loved when he woke up. 

We had a few ups and downs in the last fews days - which were expected, but overall he is on the upswing.  Today he opened up his eyes a little bit and gave me a glance. He squeezed my hand and can slightly shake his head yes or no.  He also signed Lov...  I knew what he meant. He was able to have a little half smile too when I told him that Rob and Loree were here this morning.  He was very happy. I was concerned tonight when his heart rate and blood pressure went up when I was talking to him, but they tell me that is his way of trying to breath on his own.  Yay Jon!  This may be going slow, but its in the right direction!! 

Thank you everyone for your kind words and prayers.  I am doing better now that I got to go home for a night and see my parents, brother and my little guy.  Jon bought a fabric tunnel for him to crawl through and he loved it! Also, the wonderful nurses here had a real bed for me!  How wonderful. I am hoping now that Jon is sedated and comfortable I can get some sleep.  I sang to our little guy tonight and he said “nite, nite”.

I am grateful for all the people in my life, who God has put there to be help us through this. Over the last few days I have been tested by my bed breaking, my car battery being dead and not being able to see my son or speak to my husband.  But I know He has strategically placed each and everyone one of you somewhere so that you could make a difference. I know that Jon would be so happy and overwhelmed to know of all of the support Hayden and I have had surrounding us.  Thank you is just not enough.

As Jon would say... “remember if you think life is good it will be!”

-Laura

My Second Transplant Day 126

This is what I see, when I think of Jon.  I love him so much.

Hello everyone.  Its Laura.  I am updating Jon’s blog since he is unable to.

I have never really thought about my lungs before.  They were always just something that was there.  Oh sure an occasional cold or flu may cause some discomfort and you realize for a moment while you are coughing - wow there they are.  But have you ever thought about it on a deeper level.  Just think about all of the things that need to happen in order for you air to reach your body.  I have been thinking a lot about that the last few days.  I admit I did not pay as much attention in my 8th grade health class as I should, sorry Ms. Brown, but I do remember some of how it works.

When you breath in you have a bronchial tube that feeds down into what looks like the roots under a tree.  All of those little roots then have little balls at the end called, Avioli (someone told me to think of Ravioli).  These little balls are what the air, or oxygen comes over.

Thank you so much everyone for the thoughts and prayers.  I think they will work in time.  The doctors just have to figure out what he has now. The doctors and nurses here love Jon just as much as we do, so that is very comforting.

As Jon would say... “remember if you think life is good it will be!”

-Laura

My Second Transplant Day 124

In the ER waiting for Jon to be admitted.

Hello everyone.  Its Laura.  I am updating Jon’s blog since he is unable to.

As many of you are already aware, Jon had to be incubated and put on a ventilator to help him breathe yesterday.  So that you understand where that is coming from, here’s what’s been going on.

Earlier last week Jon was admitted to the hospital because he had a fever of 103.7.  This unfortunately was being caused by two viruses, CMV and VRE.  These two viruses are in the blood stream and harder to treat.  He had been on antibiotics to get his immune system strong enough to fight it at home, but it just was not working.  They also added an antiviral and an antifungal to the mix to cover everything - they refer to that as the trifecta.

Unfortunately this was not helping and they had to admit him.  The picture above is when we were waiting for Rob and Loree to come get Hayden.  We were fortunate to have them there to help us, and also that Hayden got to spend some additional time with Jon.

While in the hospital Jon was still getting fevers.  They were dramatically up and down.  This was concerning since he was on everything they could give him.  So they decided to do some exploring and see if they missed something.  The only thing they could find was mild Pneumonia, which was probably residual from the Pneumonia he had 3 weeks ago because it looked exactly the same.  They began treating him for that, but overnight on Saturday we noticed his breathing was getting more shallow.  Overnight he was walking to the bathroom and had to be caught by one of the nurses because his blood pressure and O2 levels dropped down to 66%.  At this point he was on mandatory bed restrictions.  He could not get out of bed without assistance.

I came down on Sunday, to find my hubby happily watching the Bronco game. But when they scored and he started cheering, he began to cough and could not stop.  From that point forward anything would make him have a coughing fit, so they put him on Adavan and Oxy for the pain it was causing.  They decided to do another chest xray and CT scan.  Both were clear of anything new - just the Pneumonia that was already there.  But it looked better? (Hes a mystery of science!)

Through Sunday night his breathing was getting worse.  His resting O2 rate was around 89% and when he would just turn his head to talk to me it would drop down dramatically to 70-75%. This was starting to get scary.  They added a rescue mask (Oxygen mask) on top of his nose O2.  He was still having trouble breathing through the night.  Several times he dropped down into the red zone and they had to rush in.  The next morning, Monday, he could not catch his breath.  He was on 4-5 liters of Oxygen before and now it was increased to 11-15 liters and he was still only at 88% O2.  So they decided it was best to get him down the ICU.  While they were preparing for him to go, his O2 levels dropped like a rock.  I was standing in the hallway with a cart full of our stuff while I watched people running in. This was so scary. They added a portable O2 container to his bed and rushed him down the ICU.  I followed with the cart. I could tell which room he was in because there were several doctors, nurses and respiratory staff husseling and busseling around one room.  As I walked in they were preparing to do a bronchoscopy.  This was a procedure to get into his lungs and see what was going on. 

I was happy that they sedated him for just a little while.  The poor thing was wearing down.  About 1/2 hour later they were done. The pulmonologist came out to talk to me and told me that they did find blood in his lungs.  The amount was not large, but enough that it was coming back out through their tubes.

I went back into Jons room and waited.  When he woke he began to struggle breathing again.  Unfortunately they could not figure out why his lungs were bleeding. The CMV and VRE levels were dramatically decreased and his lungs sounded great.  Where it was coming from or what was causing it. The chest xray and CT scan was performed again and looked the same.  This was so frustrating.

Monday night was the worst.  Poor Jon was struggling to breath and so tired.  Any little movement would cause what looked like a panic attack.  They would calm him down and have him take a semi-deep breath.  I remember waking up at about 4am when the nurses where in there saying to Jon “we need you to breath” and I looked up to see a bagging device on his mouth.  They then put him on something called a b-pap machine.  It was a face mask that seals tightly around his nose and mouth and pushes air into his lungs.

He was so uncomfortable. He was still struggling to breath.  Even with this machine on he was at 92%.  His heart was racing and he was exhausted.  The decision was then made by Jon and I to put him on the ventilator.  This was the hardest decision we have ever had to make.  I love him so much and did not want this to happen, but if you saw how he could catch his breath and was struggling to breath you would understand.

After calling a few people, saying our prayers and then saying “talk to you in awhile” I was asked to leave the room...

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Now comes today... he was at 90% oxygen and 20% pressure (to allow his lung sac to open) when they first put him on the vent. He is sedated and comfortable.  He will respond to my hand when I touch him and his blood pressure, etc would calm down.  This has helped tremendously when they have to do something.  His O2 levels looked much better last night.  The goal is to wean him off the O2 and sedation.

By this morning they  have turned his O2 down to 50% (that’s 50% from the machine and 50% from him)  this is great news and something I am very happy to start the day with!  His pressure was turned down to 10% also and his chest sounds more clear.  His CT scan also is showing “improvement” with his pneumonia.  The doctors are saying they think he just needed a break.  The accumulation of not eating, having pneumonia and coughing so hard just wore him out.

Everyday they do something called a “sedation vacation”.  This is when they turn off the sedation and see how he responds. He is doing fantastic today so far.  They turned if off at 4:00am and so far he has moved his foot a little!  Yay, my Jonny is in there somewhere.  He also frowed his eyebrow when they turned him.  They have told me that he will respond more to familiar with sounds and voices to I have naturally been letting him know that I am here and saying and doing the stuff he recognizes.

This has been an emotional roller coaster!  My goodness and I am just happy that maybe we gave him what he needed, even if its been so terribly hard.

Thank you for all of your prayers - obviously they are working!  God has been here for us through this whole thing and I believe he is very close right now. If Jon could talk right now he would say “thanks”.

And thank you to my wonderful brother, who has been thrown into parenthood all of a sudden.  We appreciate you Uncy B and so does Hayden!

As Jon would say... “remember if you think life is good it will be!”

-Laura

My Second Transplant Day 117

Hello!

Before I begin, my doctors are saying that I look better in person than I do on paper!

Last week I was diagnosed with CMV, its a virus that is in my blood.  Everyone has it but only people with low immune systems have it flare up. They of course have me on another dose of antibiotics, antivirals and antifungals (the trifecta). I was able to go home and be on IV’s but then on Tuesday morning I had a temp of 103 and so to the ER we go.  Poor little Hayden was bundled like a little pea pod because it was 5 degrees outside.  They decided to check me into the hospital since it turns out that I had wheezing and such going on also. It turns out that I have walking Pneumonia, CMV, and VRE (another virus). When it rains it pours.

Since I was in the hospital they decided, “might as well poke him a few more times”, so I had a bone marrow biopsy on Wednesday to see what levels the Leukemia is at for a future transplant. At the moment until I kick this they are not looking for a donor, so that’s not in our favor. But we should know the results in the next few days.  This makes me nervous since our Dr. thought we should have a transplant, “sooner rather than later”.

Today I had an endoscopy (biopsy of my lungs) so that they could determine what I have in my lungs.  We are hoping its just the CMV, but it could be another virus or bacteria.  The possibilities are endless. I could be contagious so until we know Laura is stuck with me and can not go back to Hayden.  Sorry honey but I do appreciate you being here with me.

So now its a results waiting game.

I love this time of the year!

Laura is still busy working on the silent auction.  I am so impressed with the items she has been able to line up!  She has sporting good shops, beauty salons, wineries, bakeries, eyecare, photographers, home decor, ski resorts, restaurants, and fashion!  Its going to be good!  We are still looking for more silent auction items and we need your help.  So many of the big companies will not donate to us because we are not a non-profit.  She is putting baskets/packages together to make spectacular Christmas gifts!  We are having the auction at The Exchange Tavern in Broomfield, Colorado but due to some remodeling delays we are moving the date - tentively to December 9 (Sunday) afternoon. For all of the Bronco fans - we play the Raiders on the Thursday before.

The silent auction in Loveland/Fort Collins has been put off for now because we could not find a location.

I would love some volunteers to help Laura with the silent auction since she has so much on her plate.  I worry that she is taking on too much. You can contact her at (970) 310-4932 or Tourmaln@mac.com.

Thanks for listening - and remember if you think life is good it will be!

-Jon

Jons Journey.