Day +18 Up, Up, and Away

I would like to start today’s blog by thanking the invisible person who slipped sleeping pills into my dinner last night. Thanks to you, I was able to get a pretty good night’s sleep. Jason and I woke up around 9:00 AM and we both feel more rested than we have in days. If I were to venture a guess, I would say that we both were able to get 5-6 hours, which is a record since we have been here.

Last night we spoke to one of Jason’s doctors about his blood and marrow goals for over the weekend. By Monday she was hoping that Jason’s White Blood Cells would increase from 0.4 to 1.0. It’s only Saturday and, drum-roll please, Jason’s White Blood Cell count is 0.9!

The goal for Jason’s hemoglobin was that it would remain stable. Yesterday, Jason’s hemoglobin was 9.1, today it is 9.2.

The goal for Jason’s platelets (platelets are used to clot and heal) was 20,000 by Monday (we would say “20”). It’s the beginning of the weekend and Jason’s platelets are 22!

As far as Jason’s blood is concerned everything is on a slow, steady, positive course. Jason still needs Neutrophils, his first line of defense against infection, of those he has none. But we are hoping that as his white blood cells increase his neutrophils will start to increase. And Jason’s vital signs are steady as well. His temperature was 98.8 degrees Fahrenheit, his oxygen level was 98%, his blood pressure is 90/58 (nobody panic, it’s not that low for a young, healthy, athletic human being who has been through a lot and is on a diuretic).  

A little hiccup this morning was the sudden nausea that led him to vomit. This has only occurred once so far today but we are watching him.

The infectious disease doctors were here this morning and they were happy that Jason was feeling OK. In five days they will perform a blood test to see how much Voriconazol (the antibiotic to help his pneumonia) is in his system, and will check his lungs. Today we are grateful that Jason is feeling good, his numbers are increasing, and that we can see some light at the end of the tunnel.

Continue to pray for his lungs, neutrophils, and protection from infection.

And, “Hello,” to the new readers in the Netherlands! Thank you for reading the blog and I hope it blesses you.

Day +11: The Nosebleed has Returned

Just when we thought we were seeing a light at the end of the tunnel, another bad day comes along. Nurses anticipate patients start feeling “better” around Day +14 so we have a few days to go until some improvement could be seen. To feel “better” does not mean that he will feel well. Healing takes time. It just means that the days will slowly improve. I am praying, as are many others.

Today is rock bottom for the transplant process. Jason has a very low amount of blood in his body today (6.0) so his oxygen level has lowered (because blood carries oxygen), he has trouble keeping his eyes open for longer than a second (literally), and his energy level is incredibly poor (no blood, low oxygen…). Doctors have asked him to stay in bed but he still needs help using the bathroom and eating; this morning he fell asleep as he brought the spoon of ice to his mouth. On top of all of this his nose has started to bleed. 

Without platelets (Jason has a platelet count of 0 today) this is a nuisance as he can feel the blood trickle down his throat, causing nausea. His body attempts to clot the bleed but the clots become large and uncomfortable. Last night he had to go spit out the clot as it dislodged from his sinuses and became caught in his throat, making it very difficult to breathe. If there is an “upside” it is that this nosebleed is still minor compared to others that he has had. His past bleeds have gushed and poured for months but this is a trickle.

I know this story is graphic and you probably wonder how I can handle watching my husband go through this mess. Although I did shed tears this morning because it is emotional to see my husband so… unlike himself, you must understand that these are the symptoms I am used to seeing. This is what Jason’s disease usually does to him. It has been coming and going for years and this is what is happening to him when we tell people we cannot go to the movies because he feels “sick.” These are the symptoms that are present when we skip dates, social functions and family gatherings. I have seen this many times and this is why Jason is having a transplant. He does not want to have to cancel all of his plans because his blood level is too low to walk. He doesn’t wish to avoid activity because he is trying to hide his nosebleeds and coughing up blood.

I am sure that some of you are surprised to read this but Jason has been seriously ill for some time. The last couple of months he was doing better but last year he nearly died, and the year before that he hid a severe nosebleed for nine months while he received weekly blood transfusions to make up for the blood loss.

On the agenda for today: Jason asked me to cancel all of his visitors, and to keep the room warm and quiet. With the low blood amount he is feeling a little cool. Nurses have already given Jason one transfusion of platelets, and increased his dosage of Amicar, a drug that supposedly helps hold onto the platelets you currently possess. Another bag of platelets will be arriving soon, and then a third unit this evening. He will be receiving three units of blood today so I hope that lasts a while. Basically, Jason will be sleeping and dabbing his nose when necessary while receiving treatments and transfusions.

If you would be willing to pray for us, please pray for Jason’s nosebleed. That bleed is actually the only event that has been unexpected and it is not safe. Pray for it to be healed and for his recovery to begin.

Looking forward to sharing good news soon!