Day +17: Laughter and Lungs

As many of my friends are aware, I sleep walk, sleep talk, and occasionally yell in my sleep. When I have dreams I wake up to write them down in the dark and sometimes I write some pretty bizarre sentences.

Just last night I was speaking with Matt, Jason’s NA, about my sleeping habits. We chuckled about how his wife carries on full conversations and about how I may wander the halls of the hospital.

Then, Jason’s lungs started having more problems. His oxygen level dropped and he was having trouble staying awake so they performed another chest xray and determined his lungs still hold fluid. To strip some of the water off of his lungs they gave him another dose of Lasix, which would make him pee all night long. If Jason is having trouble breathing he cannot stand up and walk to the restroom so I hold the urinal by his bedside. Basically, when Jason has to pee I need to wake up and help him, then I need to write down on the white board how many ounces he urinated. I do this all the time.

Well, apparently I was exhausted because, when I woke up this morning, Matt was looking at the whiteboard with a look of confusion. If you glance at the image below you will see that I was not writing ounces but rather words. I believe he asked me, “What is ‘click’?” We laughed for quite some time and then he told every nurse on the floor about my bizarre nighttime scribbles. I hope it makes you laugh.

What was I thinking???

Jason’s lungs are still holding fluid, and he has an infection (which would explain the on and off fevers over the course of the past few days). Infectious Disease doctors believe he has pneumonia and were hoping to perform a Bronchoscopy to be certain of the very best treatment options but Jason’s platelet count is low enough that there is a risk of bleeding if the procedure is at all abrasive. If any abrasion were to occur, Jason's stomach or throat could start bleeding and would not heal, plus they would not be able to perform any surgical procedure because it would increase the bleeding. They will cut down Jason’s liquids today (reduced platelet infusions, et-cetera), and they will begin an infusion of Vancomycin antibiotics in the hopes that it will help relieve the infection in his lungs. Please pray for his lungs and his overall health.

The good news? Jason’s White blood cell count is 0.4 (woo hoo! Going up… slowly), and his platelet count is now 10 (whoah! Double digits! Yes, still incredibly low). His hemoglobin is 9.1 but this could be higher than the real number because he was holding so many fluids when this number was revealed. Basically, it appears that his marrow is slowly growing and producing. Our hope is that it will continue growing and replace the awful immune system that was killing him previously. Keep praying.

In an upcoming blog we will be discussing the role Jason’s sister will be having in Jason’s recovery.

Also, Hello to everyone in Botswana who is reading the blog and praying! Thank you to Jason and Deb Shirek for asking friends and family to pray for Jason – you two are wonderful. 

Happy New Birthday

“Happy New Birthday!” Shouted the cheerful nurse who entered our room at 6:00 AM. We took a long pause.

Yes, that’s right, it is Jason’s new birthday. Something we had never heard but makes a great deal of sense. Today, March 5, 2013 is a day we hope to be able to celebrate. A day we can look back to and say, “That was one of the best decisions we have made.” A day about which we can tell our children (if we choose, as a married couple, to have any children), A day we can smile about and cheerfully celebrate every time it arrives.

While there are some around us who look at us with furrowed brows, pursed lips, and concerned eyes, we are looking at each other with excitement. Don’t get us wrong, we are not enjoying the pain and the idea that this may not work. But we believe that it will work. And we are hopeful.

No one can fully understand what it is that we have gone through together. Perhaps they can quote facts and numbers, and repeat the story as it was told to them by someone who heard it from someone who told them, but only Jason can know what he felt and understand his situation.  I am proud of who my husband has become despite all that he has faced.

Today is a good day but we have a long way to go. Let’s hope that the effects of the chemotherapy do not make him too ill. Let us also hope that, during the three months of home isolation, he will not be exposed to any sickness that could harm his health and recovery. Let us hope that in the next six months of avoiding groups and events he will not get bored or fatigued. Let us hope this works.

Just moments ago Aaron left the surgery unit to arrive on the same floor, in the room across the hall from Jason. My husband stood in the hallway , so thrilled to see his big brother coming. And then Jason disappeared, ducking into his own room. What happened? I smiled at Aaron, who likely doesn’t remember this, and then I peeked into my husband’s bedroom.

I saw the tears splash on the faux wood floor before my eyes gazed into my husband’s. He was crying. His cheeks were red, his eyes were small and wet, and he put his face in his hands. Reaching for some tissues, I asked him what was wrong. He explained to me that he didn’t want to have to see his brother in that condition; on a bed, tired, eyes barely open, absent of expression. And all for him.

Whatever is happening with Aaron and Erica in their room is their own business. We have been reassured by doctors and nurses that he will be just fine. Other than that, we will wait until the facts emerge before we speculate about his condition and what he went through. I hope he has some funny stories and we hope to visit his room soon. What I can discuss is Aaron’s contribution and dedication to his brother. Jason had two perfect donor matches. When doctors said they were going to choose Aaron, he didn't say, “No.” He didn't ask them to choose the other donor instead of him (and they would have used the other donor if Aaron would have denied donating). Instead, he came to the hospital today knowing that he would undergo a surgical procedure to harvest his bone marrow for his brother. No doubt that his back will be sore for a while, and that he has undergone quite an experience, but now Jason and Aaron will have something to bond over for the rest of their lives. Aaron is a giver, just like Jason, and we are so thankful for his willingness to give what could possibly save my husband’s life.

If all goes well, Jason will be receiving a transplant very soon. And, if all goes well, Jason will share some similarities to his brother.

After a bone marrow transplant, the recipient won’t really know if it is working or not for three weeks. After that, it can still take months for it to grow and be stable. That’s a long time to be unsure of the success of the procedure. But if it works Jason could get Aaron’s allergies, and he most certainly will get the same blood type as his brother. Currently Jason is O-. In a few weeks or months Jason could be A-. If Jason’s donor would have been his sister, Jason’s blood type would have changed but so would his blood gender; his blood would have become female blood. No problems with that, just a neat fact.

So, today we celebrate Jason’s new birthday! Looking forward to the future!

On a less intense note, last night Jason’s upper lip starting swelling. They cannot narrow down the cause but it was pretty funny to see him bumble around here like Daffy Duck.

Day -5 - First Day in the Hospital

Today Jason received chemotherapy for the first time. He also received a drug called ATG (Anti-Thymacite Globuline). He has had ATG before and his previous reactions were not all that calm; he shook violently while being infused. However, this time the drug was slowed and he was pre-medicated with Tylenol, Benadryl, and Steroids. There were no real reactions this time around so we can be thankful for the anti-climactic infusion.

Along with all of the medications Jason still needs blood so he has received three units today.

Jason needs blood because one of the many awful problems with his syndrome is that his lymphatic system (part of the immune system) reacts to his blood as an infection and then destroys it. Sometimes the reactions can be small when his body is infection-free but if Jason contracts a cold, flu, a cut, or some kind of open wound then his body recognizes the infection, and his blood, as foreign material and then destroys it. This is why it has been so serious for Jason to avoid crowds, hugging, kissing, hand-shakes, etc. The reason he was hospitalized this last time was because he was exposed to the flu and his body started destroying his blood (which carries his oxygen). Without his blood Jason has trouble walking, breathing, sleeping, and eating. Up until a couple of months ago he was doing quite well but now he is receiving 6 or more units of blood per week just to “make-up” for his constant blood loss/destruction.

Today was a terribly busy day and we are exhausted. But we were happy to see Dave, a nurse and gun enthusiast to whom Jason enjoys chatting. We were also happy to discover the new TV’s in all of the transplant hospital rooms that are four times larger than a year previous. 

Hopefully this will be the miracle that we have hoped to receive!