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