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!

Not Prepared

Almost every decision that I have made swiftly has been a bad one. Unfortunately, the hospital is not really giving us enough time to think about what we are about to do. Today is Monday. We found out today that the transplant process will begin on Thursday. 2 days (Tuesday and Wednesday). We will have two days to prepare. Let's hope that this time our swift thinking will be beneficial.

Two days to inform family and get them up to speed on the process and the minimal visitation. Two days to do all of the laundry, pack the bags, buy the supplies. Two days to get my job onto a laptop. Two days to cry, pray, cry again, pray again, and two days to enjoy our home before we say, "Goodbye," to it for 4-6 weeks minimum. Two days to answer all the texts, phone calls, clean the house, empty the fridge, do the taxes, pay the bills, finish all the jobs I had started...

And one of those days we will spend 10 hours either driving to/from the hospital or at appointments.

Jason and I have barely had a chance to discuss what we are about to do. We know we are both scared but hopeful. We both know we need boundaries at the hospital and are trying to plan this without being offensive. We know we are going to miss home, the foods we like, the alone time...

But this could be something great. This could change our future for the better. A year from now we could be home and well. Maybe Jason could be working again, or maybe we could go snowboarding again. Or perhaps we could go on our first real vacation in years. We have to be positive. Fear spreads quickly so please be positive for us. Please pray for us.

Thank you!

Another year . . .

If you were seriously ill on and off throughout your entire life what would you do to become well?

Let's say that someone had a cure but in order to obtain that cure one would have to walk to the gates of hell. The walk would take you an entire year, and there would certainly be difficulties along the way. Plus, you are still quite sick.

During that year you would hardly see friends or family. Your spouse would have to work twice as hard to fund your trip and pay the bills while you were gone.

What if they told you that many hospital patients have walked the path to the gates of hell in order to grasp their healing but that 30% of those who attempted this journey died along their way? What if they told you that another 20% simply had to stop and turnaround, and another 10% were forced to turn back after being stricken with new diseases? Would you go? Would you give up an entire year of your life to walk to the gates of hell for a 40% chance of being well, knowing you could die or become more sick?

- - -


A year ago the doctors thought that my husband was not going to live. I believe one doctor's actual words were, "If I may be frank, Mr. ---, none of us expected you to be alive this morning."

Since my husband is still alive and since his condition is still quite difficult to treat or even diagnose we are given the option of a bone marrow transplant. Last year they had simply suggested the idea as a future possibility. Well, the future has arrived.

When we first heard of the idea of a bone marrow transplant we were actually just 30 feet away from the bone marrow transplant patients' hallway. We were able to meet them, become friends with them, ask questions, and even watched as a mother said goodbye to her daughter, a woman in her early twenties, who passed away during the procedure. Her boyfriend never left her side.

"How bad is it, really?" My husband asked a male nurse who we had befriended and who works with the bone marrow transplant patients. "Honestly," he replied, "We bring you to the gates of hell. And then we slowly bring you back."


* Keep in mind that all cases are different. The exact percentage of survival and healing is difficult to interpret. We are hoping for the very best despite whatever the odds!