Day +23: All the small things

White Blood Cell Count: No one told us

Hemoglobin: 8.9
Platelets: 956 K
Neutrophils: 440 K

It has been over three weeks since Jason received his bone marrow transplant from his brother, Aaron. It has been over four weeks since Jason and I were admitted to this hospital and we are exhausted. Things are like a roller coaster, and doctors say that this ride is normal.

Today a bunch of problems arose. Jason’s kidney function has been a little high so he needs to be drinking a lot of fluids, and he needs to be walking a lot. On top of that, he is retaining water so he needs to be getting rid of fluids instead of chugging them. Now, how does one abstain from water while drinking more water? If anyone out there knows the answer to that riddle just let me know.

He also has a small amount of a virus in his system that can present itself in weakened immune systems. However, it can only present itself in people who have had chicken pox or shingles. Jason has had both chicken pox and shingles so the presence of this virus is no surprise. Now his antibiotics and other drugs need to be changed in order to fight the virus. If I could remember the name of the virus I would tell you but it is another one of those acronyms that starts with a C.

Today we didn’t sleep at all. We walked almost one mile today (the hospital has a maze of hallways that, when walked in order, add up to one mile after so many laps) and Jason has been drinking as many fluids as he can. Plus, he is exercising his lungs with a breathing apparatus that requires him to breathe in and hold the breaths.

Expanding his Lungs.

Two of our favorite nurses made a bad day a little better when they brought Jason the cutest gift. If you look at the image below you will see a large, stuffed cartoon version of a platelet that is over 1,000,000 times the size of a real platelet. Jason absolutely loved it. It is hilarious. One of the nurses was present to get her picture taken with Jason. Her name is Lauren and she is probably the coolest chick on the planet. When Jason’s platelet count started going up she actually searched the hospital for a football so that she could spike it across our hospital room in celebration. Well, now Jason’s platelet count is way too high at 956,000. Yikes. Blood thinners and aspirin are constantly being administered.

The giant platelet. Awesome gift.

Lauren!

Please pray for Jason’s oxygen level, kidneys, platelets, and fluid retention. And thank you so much to those of you who have blessed us with your prayers and financial gifts. You all are wonderful.

Watching the sunrise with me this morning.

Day +22: Biopsies and More Biopsies

White Blood Cells: 7.2

Hemoglobin: 8.8

Platelets: 669

Neutrophils: 1,500 (1.5)

Another long night at the hospital when Jason’s oxygen level dipped into the 80’s (percentage). Even with deep breaths his lungs were still unable to reach 90% so the nurses had to put him on oxygen. I wondered if maybe more fluid had entered his lungs; he had gained three pounds in one night and it got me curious.

After a long morning walk Jason had to get a bone marrow biopsy (his millionth biopsy, perhaps?). He is normally not bothered by a biopsy as long as doctors promise to drug him until he is asleep and numb. Apparently it is easier for an older person to undergo a biopsy; we were told that many elderly persons do not even require anesthesia.

Jason has a high level of creatinine in his liver and it caused his body to retain the anesthesia for a longer period of time. Normally Jason would be awake after an hour or two but Jason has slept since 11 AM (It is now 8:30 PM). He has difficulty keeping his eyes open and he is supposed to be walking and practicing breathing techniques in order to clear his lungs and get his oxygen level back up above 90%. Jason has been using an oxygen source all day to make up for the lack of oxygen in his lungs. Also, the doctors discovered that it is this high creatinine level, and a reaction with the antibiotic that explains whey Jason's Tacrolimus level is still so high (even after days off of it, and halving the dose three times). This is the answer to the weeks of headaches.

Whenever we get out of here Jason will be required to get bone marrow biopsies in his lower back once every three months for a year. After that, if all is well, he will be asked to get a bone marrow biopsy once annually. In the meantime the best thing he could do would be to walk, walk and walk some more. That would get his lungs to expand and then he would be able to remove the oxygen mask but it is pretty tough to be walking around when you are still tired from anesthesia.

Doctors also performed another chest x-ray just to be sure that his lungs are clearing up. The preliminary results would say that his lungs are not much better but they are not any worse. Walks will change this, as well as the antibiotics that are hopefully working. Today they mentioned a bronchoscopy to determine the exact infection in his lungs. Now that Jason’s platelets are so dramatically high they could perform this procedure without fear of bleeding.

Hopefully tonight Jason’s oxygen will be at an OK level and he can get some sleep without much concern for his lungs. His last oxygen level was still in the 80's but he has lost two pounds in one day so I am hoping that he lost some of the fluid in his lungs.

On a lighter note, I asked Jason which item he most looked forward to sitting on when we got home: the reclining couch, his fancy reclining, swiveling extra-padded chair, or our bed. He said he was most looking forward to sitting on the toilet in his home because no one would be asking him questions about quantity, color and consistency.

Day +21: Unplugged

White Blood Cell Count: 4.6
Hemoglobin: 8.8
Platelete Count: 524 (524,000)
Neutrophils: 340

Jason's platelets are higher again today so he had to get another shot of blood thinners into his belly. Apparently the shot doesn't hurt but the burning feeling that follows is uncomfortable. The discomfort is short-lived.

On top of that he is asked to drink about two liters of water during the daytime hours. Although he will tell you that he is drinking enough, I would say he is drinking a little more than one liter per day. The doctors agreed with me and they had to give him IV fluids today to avoid dehydration. I love being right. When they weighed Jason tonight his weight increased by three pounds in one day. Hopefully that is the extra fluids.

Unlike drinking liquids, Jason is doing a very good job of taking walks. He is asked to continue walking many times each day to get his muscles moving, to clear his lungs and to prevent blood clots. Today we went on two very long walks around the hospital. We have discovered the nursing school and stared at their entire collection of nurses headwear from the past few centuries.

We also found the sleep study hallway, and discovered a quiet corner to sit and rest.

Today Jason was unhooked from his IV pole, "Jack," for half of the day. This seems like a small thing but it makes a huge difference to a bone marrow transplant patient to be "unplugged." After nearly four weeks of dragging it with him into the bathroom, into the shower, and down the halls on every walk, it is refreshing to leave it behind for a few hours. He cannot wait to be home and have his PICC Line removed so that he can go back to sleeping on his side. I think we both are tired of sleeping on our backs.

For those who do not know, according to Wikipedia, a PICC Line is a peripherally inserted central catheter, a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition). Jason's PICC line was inserted into his left arm on the first day of his admission (almost one month ago). It has been used to give him chemotherapy, blood products, and fluids. It has also been used to give him pain medicine through a pain pump attached to one of the tubes. Jason has had PICC Lines before but most have only had two leumens (tubes into his body). This time he requested a Triple-Leumen PICC line and it has been incredibly helpful.

The bummer about today is that the headaches still persist. But they were able to give Jason the pill form of Dilaudid instead of the IV form. It has been working thus far. His Tacrolimus level (the amount of a specific drug in his system that can cause headaches) is STILL high. I am sure you are wondering how that could be, after his Tacrolimus dosage has been halved twice. Well, it can interact with his antibiotic Voryconizol and stay in his system longer. They will give him a day or two off of Tacrolimus and then half his dosage again. 

The good news today is that Jason is definitely feeling a bit better. He keeps talking about eating at Buffalo Wild Wings and taking naps in his chair. Hopefully we will be there soon. And hopefully the next few months show that this transplant is a success. Keep praying for Jason. 

Day +20: Too much of a good thing

Currently, Jason’s body is producing platelets and white blood cells. In fact, he has so many platelets today that doctors have put him on blood thinners and are making him walk more in order to prevent clots. This is the first time that Jason’s blood thinner was in injection form, which was pretty weird for him. He watched as they put a shot in his belly and he cracked a lot of jokes to calm himself down. You would think that after all that Jason has been through he would not be easily scared by an injection but Jason doesn’t like pain (who does?).

We are hoping that it is not Jason’s old immune system that is producing cells but rather his new immune system. Hopefully the near future will show us that Jason’s brother’s marrow has overtaken his body and that his blood type has changed. That will be a wonderful day.

Today the doctors continued to discuss the possibility of going home next week. This Wednesday they will be performing another bone marrow biopsy on Jason to see how and what his marrow is doing. Apparently his doctor will want to give another bone marrow biopsy in a month, and then one every year. I continue to pray that this works.

Once we go home we will be avoiding large groups of people, the sick, anyone exposed to a sick individual, and unclean or dusty environments. Our parents have been helping with our home to keep it clean while we have been gone so hopefully Jason will feel safe in our own environment. Since we have been here there have been many returning patients who have contracted infections and had to be re-admitted. Although that would not be the end of the world, we are still hopeful that we can stay healthy and strong to avoid further hospital stays.

Another gift arrived in the mail for Jason. Check out the picture (unless you are a friend of mine on Facebook – then you have already seen them). 

Another Beard Hat to cover up his bald head and missing beard.

Day +19: Exceeding Expectations

Jason made the doctors smile today.

White blood cells increased to 1.6 (normal is approximately 4.5-10). Platelets increased to 110,000 (Needless to say, Jason no longer has a bloody nose)! And Neutrophils are at 270 (Normal is 2,500 – 7,000). This is all fantastic news! These numbers signal that Jason is making cells and not destroying them right now. His hemoglobin count did reduce by about half of a unit but this is not abnormal. The doctors are impressed by these good signs.

Some things that are being watched more closely would be the fevers that have been returning on and off this past week. His last fever was this morning so that is still a concern that needs to be addressed. Fevers signal infection and Jason has been having some trouble with a pneumonia infection in his lungs but today Jason was able to breathe deeper. Another complication would be the continued headache that Jason is suffering. He is currently on a pain pump that allows him to press a button to get more of a narcotic called Dilaudid but doctors want to know how they will be able to help him when he returns home.

This was the first time doctors started discussing a discharge date. There are a lot of goals to be met and a lot of problems that need discussion but it has been our experience that when they start discussing a discharge date we have about a week and a half until we get to go home. If that is true, we could be home after only 4 ½ weeks in the hospital. Then the real work would begin: avoiding infection, keeping the house clean, praying that the transplant continues to succeed, and eating “right.” I will be doing all of this along with Jason so expect to me hear me whining about not being able to eat Bleu Cheese.

Today we are so thankful that Jason’s body is doing well. Every day we have to hope that he feels well and that the transplant is successful. Worrying about its failure is stressful so we try to stay positive and take the days as they come.

One last unique bit of news would be about how Jason’s sister, Jessica, has been involved in the transplant process. As you know, both Jason’s brother and his sister were perfect matches. Jason’s brother was chosen because both he and Jason have a negative blood type. This doesn’t necessarily mean much for this transplant but it may make a tiny little bit of difference, and so they chose Aaron.

However, Jessica is still a perfect match. In order to help Jason she donated platelets at the Red Cross directly for Jason. Yes, you can do that, and the world really needs blood and platelet donors. If I remember correctly (I will check my statistic tomorrow at the Red Cross information station) only 8% of the population that is able to donate their blood and/or platelets actually does donate. If you are willing and able, please consider donating. Without blood donors and miracles Jason would not be alive today. It is thanks to the 8%, and the power of God that I still have my husband. Consider following Jessica and help sustain lives by periodically donating blood and blood products. Anyone who gets a transplant, chemotherapy, has suffered a serious injury, or is suffering from lower blood counts as a result of old age will need blood. You can help.

Jason's sister Jessica donated platelets! What can you do for others? 

In the future I will discuss how you could possibly be a bone marrow donor for people all across the world. 

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 +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. 

Day +16: Another Busy Morning

Napping in the sun, wearing the green eye shadow that the nurses thought I was wearing for St. Patrick's Day. 

3:00 AM – Wake up, Vital Checks

5:00 AM – Wake up, Blood test for possible transfusion and for daily results
7:00 AM – Wake up, Meet your nurse for the day, and meet your student nurses
7:30 AM – Can the student nurses perform a Vitals Check and listen to your lungs and stomach?
8:00 AM – Aren’t you going to eat breakfast? How much have you eaten?
9:00 AM – What did you eat? Just a chocolate shake and a strawberry Ensure?
9:15 AM – How many ounces of liquids have you consumed? Plateletes will be ready for you soon.
9:30 AM – Doctors Visit – Numbers are looking good.
9:35 AM – Housekeeping! Can we clean your room? Put on your mask so you don’t breathe the dust!
9:45 AM – Hey, the student nurses forgot some things… Also, here are your pre-meds.
10:00 AM – Your platelets are ready! Let’s get you hooked up.
10:15 AM – Alrighty, 15 minute vital checks while you are getting platelets.
10:30 AM – Vital Check
10:45 AM – Vital Check
11:00 AM – Vital Check
11:15 AM – Aren’t you going to take a shower this morning? Let’s get that started . . .
11:30 AM – Shower
11:45 AM – Can we change your bedding?

Hopefully your morning hasn’t been as busy as ours.

But there is good news: Jason’s hemoglobin did not drop over the course of 24 hours! The doctors have reminded us that it is not unusual for it to be steady and then drop again. For now, it is constant and that fact is so wonderful. Yesterday his hemoglobin was 8.6, today it is 8.6. Plus, his platelet count increased from 6 to 9! As for the white blood cells, Jason has 0.3 of those (300). Which is more than yesterday (woo hoo!) but still quite a tiny number (well, we are getting there).

Last night Jason had a small moment where his blood pressure was pretty high (149/96). We prayed and his next vital check reflected 126/54. His lungs sound great but he will be getting another xray tomorrow to make sure everything is clearing up. Continue to pray for his lungs, general health, and the success of this procedure.

We also had a quick visit this morning from Dr. Peggy. Did you read the blog post about our meeting her? Well, you should go back and find it. She performed the lung capacity tests and the arterial blood draw on Jason before he was admitted. She made us laugh on the day we wanted to cry the most. She found Jason’s room and came to visit, bringing her smile, her jokes, and a book to borrow, Unbroken, by Laura Hillenbrand. Made my day.

If the day relaxes a little then Jason and I will take a small walk, eat a late lunch, and try to nap between interruptions. Hopefully today will not be any more eventful.

Since I was up before the sun, I figured I would snap some pictures.

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 +14: Short & Sweet

Today was a wonderful break from all of the awful events of the past week. Around 1:30 this morning Jason started feeling better. Not only has he been talking but he was able to shower, walk around the hospital, and eat a small portion of solid food. It has been two weeks since the transplant and I am grateful to get a glimpse of my husband again.

I missed my wonderful husband so much that when he was awake last night I forced myself to stay awake with him because he couldn't stop talking but it cost me my health today. I have had a nightmare headache all day that no amount of pain reliever has solved, my neck is sore, and I have taken two naps to try and catch up from my missed sleep.

Jason had another chest xray today and it revealed that his lungs are doing better than yesterday. His Hemoglobin is 9.1 today, which is lower than yesterday but not too low. One doctor said that we are looking at another week of taking care of his blood and platelets until we may see some small changes that reflect a new marrow. We continue to pray for the success of this transplant and hope that the rest of the days are similar to today or better. 

Day +13: Take Some Deep Breaths

Jason and I have had a few lousy days in a row and our lack of sleep hasn’t made our days any better.

Around 3:00 this morning Jason started breathing heavily and coughing often. After a customized mixture of cough medicine was administered (a giant oral syringe of red gunk that took 45 minutes to create) his oxygen level reflected that he was only breathing about 75% of the oxygen he needed. What followed were a series of phone calls to his doctors, an oxygen mask and coaching him to “take some deep breaths”, a heart monitor, oxygen monitor, 15-minute vital checks, and a chest x-ray. Two different doctors, four or five nurses, and a grouchy respiratory therapist packed the room from 4:00 AM until about 11:00 AM. That’s right, another busy day.

The preliminary results of Jason’s chest x-ray show a lot of foggy areas indicative of some fluid in the lungs and/or inflammation. Doctors were unable to see small dense areas that would suggest a bleeding spot so they are currently not concerned about a bleed.

The condition of the lungs is still vitally important so doctors have kept Jason on an oxygen mask all morning. They have also given him a diuretic called Lasix that should remove excess liquid from his body. Jason has used Lasix many times before this hospital stay. In the past few hours Jason has urinated about 50 ounces so the Lasix is working. Last, doctors will be giving Jason some doses of steroids to hopefully counteract any possible inflammation of the lungs.

On top of everything else, Jason has a low-grade fever and the headache that started about a week ago remains constant.

I asked Jason if he has any pain in his chest or any problems elsewhere and all he said was, “No, I am just exhausted.”

These past few days have been terrible busy and Jason has not been at his best in terms of health.  He has difficulty walking, heaves when he exerts himself, hasn't been hungry in days, and has about as much energy as a baby sloth. What is strange is that his poor health now may actually be “good” signs of his bone marrow starting to grow. After all, if your body is going to “start over” it will need to go through some changes; Jason’s weekend has been full of changes.

One doctor was pretty optimistic about his body showing some moments of greatness. For example, Jason’s platelet count is 2,000 today. This is incredibly low but better than the past few counts of zero. Also, Jason’s hemoglobin is 9.6 today. Even considering that he has had a nosebleed his blood level has improved from the past two days when the blood in his transfusions was not remaining inside his body. If it weren’t for the fluid on his lungs, Jason could have possibly been feeling a wee bit better today.

For now, everyone is trying to let Jason rest, as long as he has an oxygen mask, and I am still just trying to take some deep breaths. 

Day +12: Happy St. Patrick's Day

"Christ beside me,

Christ before me,

Christ behind me,

Christ within me,

Christ beneath me,

Christ above me."

– St. Patrick

Yesterday was a tough day. Jason’s blood level was low enough that he wasn't really able to go to the bathroom on his own. He didn't eat and barely opened his eyes. Nurses packed the room for vital checks every fifteen minutes, attached a heart monitor, and watched him very closely. Today his blood level has only increased a little but his eyes have been open a lot more today than yesterday, and he ate a Popsicle.

Part of his exhaustion can be attributed to the transplant process. After a few units of blood Jason usually feels at his best but the past few days the blood has just given him a very small boost. Nurses are not worried about his low blood but are obviously worried about his health when his levels get that low. They keep talking about how his body is starting over. If this transplant is working then Jason’s body needs to begin again with baby steps. Hopefully soon we will see Jason walking down the halls but right now he just sleeps.

Despite Jason’s lack of platelets (zero, again), his nosebleed hasn't really gotten any worse. In the past this nosebleed would have eventually become larger and larger but doctors can hardly see the trickle of blood down the back of his throat. Plus, the horrific mouth sores that seem to have plagued all of the other patients haven’t really been an issue for my husband. He has rarely complained about mouth pain and when the doctors looked at the sores today they noticed some healing. And another piece of good news is that all of those vital checks yesterday just showed everyone that his body’s vitals are healthy; his blood pressure never wavered, and his oxygen level was good. Sometimes his fever would return but was well-managed.

Plus, the doctor performed a blood test to see if Jason’s body is still destroying red blood cells. At this point, it is not his disease that is reducing his blood level – this is excellent news. Between chemotherapy, and a few stray antibodies in his blood that hopefully will pass, his blood level drops but we are confident that the transplant will erase this trend.

Today the hospital has been a lot quicker with his units of blood. I hope they are this fast tomorrow as well. With the blood being given to him a little earlier I was able to see him with his eyes open for an hour or two today. Now, he rests. I look forward to when he can say more than just a few words to me every day. I am fine with silence but I miss my hubby.

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!

Day +10

We have finally hit the double digits here at the hospital! It has been ten days since Jason has received his transplant, and over two weeks since we had been admitted. We still wait for the marrow to grow and start producing cells. It could be a while but we are hoping to see this happen soon.  Jason’s platelets remain steady at 7,000 (really low) and his hemoglobin fluctuates between 8 and 9 (not too bad).

Jason had a fever today but no one seems surprised. We are told it is normal, and the fever was under control in about 20 minutes. I must say, there are many things about this hospital we can really appreciate. He was able to get a few hours of sleep last night, and he is sleeping now after a busy day of antibiotics, blood draws, a chest xRay and platelets.

Another present arrived for Jason yesterday. Since he is my lumberjack, I got him a pillow with a bark pattern. What he doesn’t know is that there will be nine more of these pillows at home for him. Here is a picture of him sleeping on it this morning.

On the schedule for Jason today is the hope of a lot of sleep and healing. On the schedule for me is a small window to get some work done. You would think that sitting in a hospital all day and night would mean that you have oodles and oodles of time on your hands but the truth is that you are often helping your patient, moving out of the way of nurses, and running errands all on little or no sleep. When Jason sleeps I sleep.

But I am not “down” or “upset” or “sad.” I can assure everyone who is concerned for my health that I am very optimistic and relaxed, that I am eating three meals per day with snacks, that I shower every day, do my laundry, that I haven’t lost or gained any weight and I even do my hair and makeup in the morning. I appreciate your concern but I am quite fine. And my mother is my “caretaker,” making sure that I have been taking care of myself.

If I do become stressed, it would begin once we return home and I will need to begin cooking (per hospital rules), cleaning (per hospital rules), taking care of Jason and monitoring his meds, driving him to the hospital 1-3 times per week for months, and returning back to work when Jason is able to take care of himself. But I know there are many people who have offered their help and I will gladly take it. I am grateful for the friends and family we have who are willing to help us on this long journey. I continue to walk forward with the hope that this strange and dangerous procedure will be the beginning of a terrific, long life for Jason! Thank you for all of your prayers and help!

Day +9

This morning has been great compared to yesterday. Jason is still weak, tired, a little frustrated, and his body and face are covered in blood spots from having low platelets consistently over the course of several days. However, he was able to get up out of bed for the first time in three days. He walked to the end of the hallway and we had hot chocolate while he watched the sun rise.

Jason is also talking to me more than he has in a while. Yesterday he was put on a pain pump so that he can control his own pain medication and that has helped significantly. I also believe that his headache has improved because his Tacrolimus has decreased. I just wish they could continue to lower his dosage or skip it completely but this is a drug that transplant patients are taking for quite some time after transplant. Those headaches are crippling and, according to Jason, those are the worst days he has had during this transplant.

While on Dilaudid Jason has been quite a comedian though. One second he can be talking to me about how he wants to body build again, and the next second he is asleep while sitting, telling me that, “Those idiots wore purple with yellow.” And that, “Tomorrow is the day we wear yellow.” He also told me that there were mangy muts around our property. Last night’s dialog was the most amusing, saying, “No matter how old you get your hands never grow.” That made me laugh out loud at 3AM.

Today has been a little frustrating only because he has just started to feel a bit better and all of the nursing students want to meet him and help him. Normally this would be welcomed but when you feel absolutely exhausted but you finally can sit up and talk, you do not want to talk to nurses and students all day. This room has not been empty since 6AM and I can tell that Jason’s patience is tested.

While students were in the room they asked all kinds of questions about Jason’s past with Evans Syndrome and ALPS. Finally, Jason just told them that he survived 2.2 hemoglobin; this news was received with a lot of shocked faces. The nursing instructor actually double-checked his medical records to see if Jason was lying. Then, she told the girls that they may never see another person in their nursing career who survives such a low blood count. I just found it amusing that she assumed that we were embellishing our story.

I am just happy that today Jason feels well enough to talk to me and relax, instead of worrying so much about pain. If we could complain about anything, it would be the large, uncomfortable sores in Jason’s mouth that we had discussed previously; these were expected by doctors. Jason needed to stop brushing his teeth, and he uses a saline rinse in his mouth to keep the sores clean. And his nose has been raw and dry so we are watching it for bleeds. Fortunately, his hemoglobin has stayed steady for 24 hours, and his platelet level (although low) has not decreased.

Please continue to pray for us! Thank you for all of the prayers, Jason looks so great today and many have noticed - we know God is helping us. 

Day +8: The Beard is Back!

You won't believe me but Jason is actually trying to smile for this picture.

Today is Wednesday, Day +8. Everything is right on track according to the doctors. Let’s talk about how Jason is currently feeling.

Due to the chemotherapy, Jason’s white cell count is down to .1. This means Jason is completely susceptible to any sickness. Like a newborn baby, he could contract any sickness or sniffle. We will not have any guests for a little while for this reason and for others. So far, Jason has done well and has no infection! Woo Hoo!

Jason’s headache hasn’t left in a few days and it keeps him in bed most of the time. It turns out that his Tacrolimus level, despite being lowered, is still too high. As we discussed previously, Tacroliumus is a drug Jason receives but it can make him shake or cause severe headaches if the dosage is too high. They are giving him an entire day off of the drug and then lowering the medication again. Hopefully this will get rid of this obnoxious headache! The past few days he has had very little shaking but he has required more Magnesium. Magnesium levels can decrease when Tacrolimus.

Also, Jason’s mouth has become very raw. Fortunately, the headache pain relievers have been able to numb most of the pain in his mouth. It looks terrible but there are no active bleeds. He is being transfused with 2 units of washed platelets twice per day. His platelet count is still low but we are hoping that the platelets they give him will prevent any bleeding. This hasn’t been perfect and he needs to be careful not to eat sharp, dry foods. He has been slowly eating some French toast in the morning, and then enjoying chocolate shakes as the day continues.

Despite another day of feeling unwell, doctors say he is about a week or less away from beginning to climb out of this pit. I am looking forward to him feeling better, acquiring some white blood cells, and producing platelets. Continue to pray for this. We are so thankful for your prayers and we know God is helping us.

Some fun news: The gift I bought for Jason arrived today. It was a little emotional for him to watch his beard hairs fall onto his bed, and to get his head shaved again. His hair is becoming less and less so I ordered him… a bearded hat! Jason loved it the second he opened it and he has been wearing the hat ever since. The one nurse who has seen him has been laughing about it. Jason says it actually does make him feel better. Today we will go on a walk in the hallway so he can show it off.

Sleeping in his new hat. Jason says it makes him feel so much better.

It’s What’s on the Inside: Day +7

Today is the thirteenth day at the hospital, the 9^th day after chemotherapy, and the 7^th day after the transplant.

As of this morning Jason has another headache and no one can really figure this one out. He is taking Dilaudid again to relieve his pain but I think it has a side effect that Jason doesn’t seem to notice. After he takes the drug, he starts scratching his face, neck and back. With low platelets he needs to be careful because scratching has led to large blood spots under his skin. They are now on his face, chest, shoulders and back. Without platelets these spots are not healing. And if there are any bacteria under his fingernails he needs to avoid scratching his skin to prevent the possibility of an infection; chemotherapy has taken away most of his immune system’s fighting chance to destroy an infection.

And the hair loss has begun. Jason’s beard started falling out in clumps last night, and he can pull out chunks of his hair this morning. Though, he pulled on some leg hairs and those were not ready to budge. He let out a high-pitched, “Youch!” This made me laugh.

I bought him a gift a few days ago that will hopefully arrive in the mail soon. I cannot wait to show everyone. I am pretty proud that I thought of it and I know he is going to love it. Plus, he will be the only person he knows to own one. Hopefully he will let me take his picture with it when it arrives. I have a feeling a lot of chemotherapy patients will be getting them in the future. No guesses, please. I don’t want him to find out about it and I don’t want others to get it for him before me… It is my gift to my husband.

This morning Jason doesn’t feel too terrible. But he is far from well, and neither of us were able to sleep last night.

Today he is going to shave his head again and shower. I am going to try to work using the tiny bit of energy I stored after only two hours of sleep. While I am here I want to be able to keep my current job and still take care of my husband. It is hard to work with interruptions every half hour that last between 5 and 20 minutes so taking care of Jason will be my priority.  

Easier Said than Done: Day 6

If you were to meet with doctors about a bone marrow transplant they would give you a plethora of information. Some of that information I will actually share, word for word, from the bone marrow transplant guidebook (I read it three times before admission. Yes, I am one of those people).

Today we are experiencing one of the many days doctors warned us about. Most of the transplant patients have days in a row where they feel “blah.” Today it’s as if Jason’s whole body has the flu. No shakes, no chills, just that feeling like you are sick, really sick. Fortunately, Jason hasn’t had too much nausea and no vomiting today. I am hoping he can rest as much as possible over the course of the next few days until his body begins to climb out of the pit.

Unfortunately, the insides of his cheeks have become raw and the first layer of the skin inside his mouth has sloughed off. This is not unexpected. Some patients will get sores inside their mouths. The discomfort can lead to difficulty eating and drinking but it is very important that patients eat and drink. The loss of skin cells in his mouth occurs because Chemotherapy attacks fast growing cells. Your mouth and hair cells are fast growing and will usually be attacked as chemotherapy continues its work inside your body. Jason hasn’t had any hair loss yet and will probably have to get another haircut before his hair falls out; he doesn’t wish to see it fall onto his pillow in large, dark clumps.

To continue yesterday’s conversation I would like to give an update about Jason’s current platelet count. Whatever the reason, whether it be the donor, the chemotherapy finally suppressing Jason’s immune system to the fullest, or something else, Jason’s platelet count has risen again! He now has 12,000 platelets and his blood level is only lowering by about .3 units per day. This is wonderful news and we look forward to more good news to come as Jason’s body takes on the properties of his brother’s immune system; this will take months so don’t assume it happens overnight. The marrow from the donor has to attach itself to Jason and slowly grow over the course of the next year. We hope to see improvement in his health as this occurs. Doctors are still slightly concerned about his platelets, but the doctors today are not his regular doctors so they know very little about his past with low platelets.

*A tip for the caretakers: Purchase or borrow a laptop for the duration of the hospital admission, along with a pair of headphones. The person for whom you are caring may not have the same taste in music, television and books. If you have a laptop you can watch TV shows, listen to music, and read online without ever interrupting the patient’s favorite TV Shows.

*As long as Jason is in the hospital I always let him have his way with the thermostat, TV, food, etc. I may not appreciate eating Domino’s pizza every other night, or watching 8 hour marathons of Gold Rush reruns, or sitting in a room that is 60 degrees tops. But this is Jason’s health, not mine. And when Jason doesn’t feel well then I don’t think it is right to overrun the areas of his life where he can make his own decisions. A lot has been taken away from him and he should be able to have control over these small things. Plus, if I were in his position I would want to have a caretaker that cared more for my needs and wants than for their own. 

They would need to be OK with eating pasta, Mexican or experimenting with new restaurants, they would need to be able to sit through hours and hours of Dateline, 20/20, 48 hours, 60 minutes, Law and Order, any crime drama, or HGTV. They would play my Youtube playlist on repeat all weekend long and tolerate my singing along. And they would need to learn how to tolerate a very warm room without so much of an utterance of complaint (get some ice water and a cold pack, people, geez. If I can shiver myself to sleep for nights in a row you can tolerate a warm room).

Now, as Jason heals I have the hope and expectation that he and I will be able to compromise on how much television and what kinds of TV shows we watch, the thermostat, and the food. Marriage should not be one-sided. If you love someone you will wish to do the activities they enjoy in order to please them; it goes both ways. But in the meantime I believe this is the right course of action.

Patients are not comfortable in the hospital. They do not sleep in their own bed, they rarely look their best, and they constantly have people asking them invasive questions and touching them. Doctors dictate where they go, what they cannot eat, when they sleep (if ever), and how often they need to shower, walk, and more. Be kind and understanding.

I should also add that Jason is an amazing patient. When Jason is sick he does not yell at me, scream at nurses, throw food, swear at the doctors, or even complain much (which surprises me because I would be complaining if I were going through all of this). And, yes, I have seen patients performing all of the aforementioned actions. This makes my job as a caretaker a great deal easier; I can focus on helping him and I don’t have to feel the stress of an angry or abusive spouse/patient.  

The Power of One Donor: Day +5

As we discussed in the last blog entry, Jason has a low platelet count. Perhaps I should be more clear to those who are not sure about the purpose of platelets.

Platelets clot blood in order to heal wounds and prevent bleeding. According to Wikipedia, “if the number of platelets is too low, excessive bleeding can occur. However, if the number of platelets is too high, blood clots can form, which may obstruct blood vessels and result in such events as a stroke, myocardial infarction, pulmonary embolism, or the blockage of blood vessels to other parts of the body, such as the extremities of the arms or legs.”

Today Jason’s platelets are low but, in my opinion, something miraculous has happened.

Last year, Jason was hospitalized for over forty days. During that time, he was internally bleeding and his platelet count was too low to heal that bleed. In that time, Jason was being infused with numerous units of platelets in hopes of them staying in his blood to heal the wounds. This never worked. Often, after infusions, a blood test would reveal that Jason’s platelet count had dropped even lower.

When Jason’s platelet count indicated a downward trend, this week’s doctor on call was deeply worried; she was actually surprised that we were not panicking along with her. After speaking to Jason’s regular doctor her panic subsided. She now knows that Jason’s blood has had a habit of low platelets. She is obviously still concerned but not overly so.

So, what is the big miracle? Well, as I said, Jason hasn’t ever, not ever, not once responded to platelet infusions. It almost made me laugh when doctors and others would still be surprised that, after the fiftieth time (that’s right, 50^th) Jason’s body still had no response. After all, his immune system, when activated, kills platelets and red blood cells.

And the day before yesterday Jason received more platelets. After testing, his platelet number decreased. 

But yesterday something happened. Jason received platelets and his platelet number increased from 4,000 to 7,000 platelets! Now, let’s be clear, a count of 7,000 platelets is still dangerously low. 95% of the people reading this will have between 150,000 and 450,000 platelets in their bodies. This hospital does not regularly discharge patients who have less than 30,000. Though, Jason has been released with a count above only 10,000. But during a bone marrow transplant all patients will lose platelets so don't be too shocked that his platelets are low. 

But why did these platelets stay in his system? Why didn’t they pass through like all these others? No one has a clear understanding of this but it seems like this particular platelet donor was the best match ever. They cannot confirm this, and it is too early to speculate if this donor's platelets would be able to perform the same increase again but so far, this is the only time a platelet infusion has worked. The hope is that this particular donor’s platelets will continue to work in Jason’s body.

Today doctors actually called the exact donor and asked if they would be willing to donate again, specifically for Jason. This person said, “Yes.”

As I type, Jason is receiving these platelets in the hopes that, once again, his numbers will rise. For now, we are thankful that they even rose at all, and that there is someone in the area willing to take time out of their day to continue donating for Jason.

Let us not forget that the bone marrow transplant is not in full effect and that Jason’s immune system still has a small amount of power to destroy platelets. But we are still joyful that for one day Jason’s body received help and didn’t harm it. Perhaps today this will happen again!!!

Looking forward to informing you about the outcome of this transfusion and thank you for all of your prayers. Yesterday was wonderful!

-----

*** Today Jason's second and incredibly long headache has somewhat subsided. His nausea is present and he is very tired. He has been sleeping all morning and says he feels, "Blah." But his appetite is not completely lost. 

Day +4

Just when we thought the headaches were over . . .

Doctors are still not worried, and are giving him painkillers to alleviate his discomfort. And the aches are not as bad as they were previously. Jason is able to move without vomiting, and he can listen to quiet television. Fortunately, his Tacrolimus level (the amount of a specific drug that was in his body) has decreased so we should be seeing a decrease in headaches.

Now the doctors have a new concern – Jason’s platelets. Jason has lived with low platelets off and on throughout the years. As long as he is careful they usually do not cause too many problems but without them he is at a higher risk of bleeding. The year before last he had an eight month nosebleed. Swallowing the blood led to serious stomach discomfort, and the taste of the blood often destroyed his appetite. It obviously limited his social time as well since he was embarrassed by the constant sniffling and possible blood drips.

Currently, Jason is not bleeding anywhere and we would like to keep it that way. Normally a patient undergoing a bone marrow transplant should be walking frequently. In Jason’s case, he is confined to his bed for the most part, to prevent the possibility of falling and bleeding. Without platelets he would not be able to heal the bleeding.

Although he is getting platelet transfusions, Jason’s body does not usually respond to them. Let us hope that, with the help of a bone marrow transplant, his body will be able to produce (and not destroy) platelets. Amazing how one tiny thing that you never see or give any attention can seriously impair your quality of life.

Day Counting information: As you have probably noticed, some of the posts are titled "Day -1 (negative one), Day 0 (zero), or Day +4 (plus four). Negative numbers represent the days before your bone marrow transplant. These numbers count down to Day Zero, which is Transplant Day. Any day after that is a positively numbered day. So, if today is Day +4 then this is the fourth day since his transplant. 

God Bless the Givers (Day +3)

They say it is more blessed to give than to receive. Jason and I believe that statement. For years we have been receiving and, although we are grateful, we would rather be the people who are giving to others. We know what it is like to need something or to ask others for help, and it is humbling. Hopefully, one day, we can be the givers. Until then, thank you all for  giving to us. It has made all that we have been through become an opportunity to learn, grow and make new friends, and it has definitely made our situation better.

Since Jason’s health problems returned five years ago there have been many who have given to help us. For all of the meals, treats, small toys, gift cards and financial blessings, thank you! One of my favorite gifts since coming to the hospital this time has been the Chocolate Cherry Hemp body lotion from my cousin Nancy (Oh my gosh, I could eat it with a spoon). And so many people have prayed for us, given us financial help, brought us food and gifts . . .

In this hospital there are many givers. If I may, I would like to take the time to show you a couple of amazing examples of giving. I hope they will serve as inspiration to you. I hope all of us are helping our friends and family who are on difficult journeys. But what could you do for a stranger? Personally, I find it easier to give to strangers than to friends – of this I am not sure why.

While I was enjoying a momentary break to sip my hot chocolate and look for photo opportunities I noticed a basket that I had seen over the years and I wanted to inform people about it. This particular basket was filled with all sorts of beautiful, crocheted hats, free to take for any cancer patient (Jason is often treated in the same areas as cancer patients). In the past, I have seen similar baskets filled with scarfs and mittens as well. The tag on the basket says “Peggy’s Hats for Cancer.” These hats are incredibly popular on this floor of the hospital. When walking past patient rooms you will see nearly every woman and some men wearing them. They have become some kind of fashion statement among those who are fighting a war for their lives.

These hats are nothing fancy or extravagant. They are not spun from gold or embellished with expensive accessories. They are just hats. But I cannot tell you how many people have taken from this basket to cover their baldness or to simply keep their heads warm after the chemotherapy has stripped their hairs from their heads. I have seen similar baskets in the children’s hospital, in the chemotherapy units, and obviously in the inpatient hallways.

What a simple way to show people you care. What a unique way to help others and spread some love while making people feel well.

Another wonderful example of giving is through those who are willing to walk directly into your situation and offer you healing through the arts. Last year, Jason and I made friends with Kevin and Laurie. Kevin was undergoing a transplant and we were able to ask them questions about the procedure and also just chat about life. I couldn’t believe it when they told me that they are from Gays Mills, WI, a town my family and I would visit every year during their Apple Fest to sell our artwork. Even stranger that they have an orchard that we have frequented!

Their daughter Amy, a music therapist, was able to help write and compile songs written by cancer patients and their caregivers. There is a lot of talent in this CD, and the stories the lyrics tell are incredibly touching. The words will give anyone a great insight into the emotions and struggles that these people have felt and endured and, thanks to Amy and others like her, their stories can be told through lyrics and music.

Thanks to Laurie and Kevin, who also have their own songs on the discs, Jason and I have a copy of the CD. I would highly recommend it to anyone looking for a gift for someone who has been through or is going through serious and life-changing events such as cancer, or if you wish to peek into the hearts of those who have faced tremendous obstacles. You can purchase the CD on the Gundersen Lutheran hospital website here: http://www.gundluth.org/cancer/hope-grows

If you are willing to help others, be creative and use the gifts you currently possess to make a difference. Perhaps you can crochet hats or write music or maybe there is something else that you can do. Don’t be shy about helping others.

We have different gifts, according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your faith;  if it is serving, then serve; if it is teaching, then teach;  if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy,
do it cheerfully. - Romans 12:6-8

*On a more personal note, Jason’s headache from yesterday lasted 27 ½ hours before he no longer needed painkillers. This morning he is feeling better and even ate breakfast. Hopefully his Tacrolimus level has lowered. When they do resume his regimen for the drug they will lower the dosage.  

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.