Day +15: Walking and Sleeping and Eating and Chatting

Last night was the first night of real sleep that Jason and I have enjoyed since arriving nearly three weeks ago. When the rays of sunlight crawled into our room this morning we covered our faces with pillows and blankets and hid under them until the nurses came into the room to check Jason’s vital signs.

Jason ate a little bit for breakfast, chatted over hot chocolate, and even walked around the hospital. Actually, Jason was able to walk all the way to the Children’s Hospital to visit friends. Plus, Jason will be entertaining company for just a few minutes this afternoon.

So far, Jason’s vital signs have been good. His blood pressure is lower than the nurses are used to seeing but they say that it is healthy. His oxygen level is holding steady in the mid 90’s so everyone is pretty confident that his lungs are doing well. His headache is still present but it has been controlled by a pain pump.

The doctors were discussing Jason’s health this morning and we are just waiting to see some improvement in his White Cell Counts, and steadier blood levels (his numbers still decrease by about one half unit per day), as well as an increase in platelets (still 6,000). They anticipate at least a week and a half until we see those numbers improve.

We continue to hope that Jason will be feeling better every day, that the bone marrow starts to grow, and that his blood counts increase. We cannot wait to be home.

Also, we would like to take a moment to thank our Church family and friends for their generosity and kindness during this emotional and difficult time. Your support has been wonderful! 

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!

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 . . .

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!