A "Down" Day

Today Jason is a little down. At 1:30 AM he woke me to let me know that he had a pretty severe headache. He has gotten severe headaches before. Usually he can sleep them off or, with medications, conquer them in a matter of hours. So, after calling the nurse to get meds, and saying our prayers, we assumed he would be back to his old self in no time.

At 3:30 AM Jason was wide awake again, with the same throbbing pain. Drugs were given but he started to vomit from the pain. It is now 9:30 AM, 8 hours after the first signs of a headache, and Jason is still in pain. With the help of Dilaudid (a narcotic painkiller that makes his pupils enlarge) he can remove a decent percentage of pain but, once that wears off, he is feeling it. I have also been lightly rubbing his back because he says it makes him feel better. For now, he feels most comfortable by resting on his side with a pillow over his head. The doctors said to keep doing what he is doing and to rest; that this just may be a "down" day.

Every nurse and doctor on this floor has been made aware of the situation and no one is very concerned, which is a good thing. Afte rall, Jason's platelets are not completely bottomed-out, his blood level is good, and he is otherwise "healthy." They are taking care of him very well and have a few hypotheses about the cause of this record-length headache:

1. Jason is under a lot of stress. In the past seven days he admitted himself to the hospital, signed a stack of papers that informed him that a possible side-effect of transplant is death, lost 3/4 of his average sleep time, lost his privacy, underwent a series of medication infusions, saw his brother undergo surgery, and received a transplant. No doubt that all of these factors could combine to cause a pretty nasty brain pain.

2. Chemo/ATG (Anti-Thymacite Globulin). Jason has received Chemotherapy and ATG this past week. Although the chemotherapy drug itself should be out of his system, ATG, Anti-thymocyte globulin, an infusion of horse or rabbit-derived antibodies against human T cells (You read that right, horse or rabbit...) which is used in the prevention and treatment of acute rejection in organ transplantation and therapy of aplastic anemia. ATG can have some nasty side effects. Although those side effects usually occur while being infused (in Jason's case, he would have the chills and shakes) it is possible for side-effects to present themselves even days later. Headaches and flu-like symptoms would not be uncommon.

3. ***This morning's most-likely candidate: a high Tacrolimus level.
    Tacrolimus is an immunosuppressive drug that is mainly used after allogeneic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. It is a 23-membered macrolide lactone discovered in 1984 from the fermentation broth of a Japanese soil sample that contained the bacteria Streptomyces tsukubaensis. That's a fancy way of saying that it stops his immune system from destroying Aaron's marrow donation before it can grow in Jason's body and it is used in conjunction with other immunosuppressants such as ATG and Chemo.In the past, when Jason's body built-up too much Tacrolimus his hands would shake and he would get some pretty nasty headaches. Jason is currently on Tacrolimus and his hands were shaking this morning. Solving his headache could be as simple as him skipping a few doses of Tacrolimus and then lowering his continued dosage.

4. *Least likely and no evidence to support thus far: Brain bleeding. Obviously a headache this severe that lasts this long should be examined and doctors have already checked on Jason for the usual signs of brain bleeding. His platelet count is low, but not THAT low. His blood level is not lowering rapidly, his vision has not changed, he can move his head, his neck does not hurt. If his Tacrolimus level is normal then Jason will get a CT scan just to be on the safe side. Once again, no doctor is concerned of this possibility.

For now, if you could take some time to pray with us for this awful headache and nausea to pass we would really appreciate it. We have been praying and will continue praying and we hope he gets better quickly.



*** UPDATE: Doctors just confirmed Jason's Tacrolimus level is too high. He will have some time off of these pills and will have a lower dose when he resumes his regimen. If the headache persists until the evening then they will perform a backup CT Scan as a safety precaution.

Happy New Birthday PART 2

The infusion of the bone marrow went well for Jason. No real reactions. And now his brother’s marrow can attach itself to Jason and slowly grow. In two to three weeks hopefully we will see some results. As the months go by things will become less and less serious and more and more exciting.

Today was exciting but more than excitement we are touched and blessed. After all, only 30% of siblings are possible bone marrow transplant donors. And it is not likely for the donor to be a perfect match. Jason has two perfect matches and both were willing to give to him.

One of Jason’s favorite nurses was along for the ride and took a picture with him. You can see Holly’s pic below.

And when Aaron woke up (funny stories to come) he was able to join his brother and watch as the first cells entered his body. Parents and siblings were also invited to the event, which is about as anti-climactic as a blood transfusion. Risks for Jason would have been reactions to the small bits of Aaron's red cells that they were unable to extract fully from the marrow. You can see the bag of marrow labeled "biohazard" in Jason's hands in the image below. Jason could have reacted to the marrow with shaking, chills, or other almost "allergic" reactions. Aaron's blood type is A-, and Jason's is O- so if a few red blood cells from Aaron enter his blood stream his body could try to harm them and a reaction would begin. Between Cytoxin chemotherapy, ATG (A horse enzyme called Anti-Thymacite Globulin) and Steroids, Jason's immune system was all but gone so fighting Aaron's blood during the transfusion didn't occur. 

Obviously Aaron has been through a lot. His back has received 300 harvests. And, after the “washing” process, 500 ml of his marrow was taken to give to Jason. His back hurts, he’s going to be appreciative of pain pills and time off. We are so happy that he was willing to go through this surgery and time of discomfort so that Jason could hopefully be well. If he lets you look at his back you will see a couple of decent-sized holes. I would compare them to the diameter of a Culver’s straw but I only saw them for a second. Either way, those are some big holes in his back!

I heard through the grapevine that Aaron woke up from his surgery swinging his fists at the nurses. Hilariously enough, he had told Jason that he would wake up swingin’.

For now, all is well. Aaron is resting, Jason is not in any pain tonight but he is emotional about the process his brother has undergone so that he could live. He read a particularly touching text message from his brother last night that brought tears to his eyes.

Be sure to ask Erica about the “caveman” nurse, and how the doctors yanked Aaron's bandages off of his back.

That’s all for now! We are going to bed early . . .

Day -3: Never say, “Never.”

Ahhh . . . Saturdays at the hospital have their positives and negatives. For now, I will only discuss the positives and hope that we will not have to deal with the negatives. On Saturdays there are very few people here so we can wander the halls without worrying about crowds. It is a lot more relaxed and we started the day with our morning walk/coffee. We also watched the sunrise from our hospital room window (see images below). It was a good thing that we were moved across the hall yesterday so that we could see the sunrise every morning. *Story continues below images . . .

On our walk we met with O’Brien, a middle-aged lymphoma patient and transplant recipient. His story was pretty incredible so we hope to meet with him again soon. He has been battling the cancer half of last year. He was admitted to the hospital on that same day as Jason, and he will be receiving his transplant on the same day as well. His story is a little different in that he will be receiving his own stem cells, and not the marrow of a donor. These types of transplants are ideal and he will likely be out of the hospital in just a few weeks. Incredible!

O’Brien is a runner who had his knees replaced five years ago. Doctors told him he wouldn't run again but he just completed another half-marathon last year.

His story reminded me of a particularly inspirational moment that I experienced while on vacation in Ft. Myers Beach, Florida. I was standing in line at the beach Dairy Queen and noticed the attractive man in front of me; his legs had large scars running up the back of his calves. He was a tall young man and I whispered something to my mom questioning what caused the scarring. Just then, the man grabbed his ice cream through the window and turned to walk away. I noticed a small black tattoo of text across his bicep, it read: “You will never walk again.”

I have reminded myself of this memory whenever life starts to get “impossible.” Clearly, that young man had been in a situation where he was told he would not walk again. But there he was, on the beach, scars on his legs exposed for the world to see, and walking. Never say, “Never.”

PS – Last night Jason and I were watching a purple light flashing in one of the windows across the way. When we asked an NA about the lights, he told us that the hospital has implemented a UV light cleaning system in all of their rooms, in addition to standard housekeeping procedure. Not so sure how it works, but the lights are pretty to watch at night when we cannot sleep.

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!