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 +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!

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. 

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 . . .

Happy New Birthday

“Happy New Birthday!” Shouted the cheerful nurse who entered our room at 6:00 AM. We took a long pause.

Yes, that’s right, it is Jason’s new birthday. Something we had never heard but makes a great deal of sense. Today, March 5, 2013 is a day we hope to be able to celebrate. A day we can look back to and say, “That was one of the best decisions we have made.” A day about which we can tell our children (if we choose, as a married couple, to have any children), A day we can smile about and cheerfully celebrate every time it arrives.

While there are some around us who look at us with furrowed brows, pursed lips, and concerned eyes, we are looking at each other with excitement. Don’t get us wrong, we are not enjoying the pain and the idea that this may not work. But we believe that it will work. And we are hopeful.

No one can fully understand what it is that we have gone through together. Perhaps they can quote facts and numbers, and repeat the story as it was told to them by someone who heard it from someone who told them, but only Jason can know what he felt and understand his situation.  I am proud of who my husband has become despite all that he has faced.

Today is a good day but we have a long way to go. Let’s hope that the effects of the chemotherapy do not make him too ill. Let us also hope that, during the three months of home isolation, he will not be exposed to any sickness that could harm his health and recovery. Let us hope that in the next six months of avoiding groups and events he will not get bored or fatigued. Let us hope this works.

Just moments ago Aaron left the surgery unit to arrive on the same floor, in the room across the hall from Jason. My husband stood in the hallway , so thrilled to see his big brother coming. And then Jason disappeared, ducking into his own room. What happened? I smiled at Aaron, who likely doesn’t remember this, and then I peeked into my husband’s bedroom.

I saw the tears splash on the faux wood floor before my eyes gazed into my husband’s. He was crying. His cheeks were red, his eyes were small and wet, and he put his face in his hands. Reaching for some tissues, I asked him what was wrong. He explained to me that he didn’t want to have to see his brother in that condition; on a bed, tired, eyes barely open, absent of expression. And all for him.

Whatever is happening with Aaron and Erica in their room is their own business. We have been reassured by doctors and nurses that he will be just fine. Other than that, we will wait until the facts emerge before we speculate about his condition and what he went through. I hope he has some funny stories and we hope to visit his room soon. What I can discuss is Aaron’s contribution and dedication to his brother. Jason had two perfect donor matches. When doctors said they were going to choose Aaron, he didn't say, “No.” He didn't ask them to choose the other donor instead of him (and they would have used the other donor if Aaron would have denied donating). Instead, he came to the hospital today knowing that he would undergo a surgical procedure to harvest his bone marrow for his brother. No doubt that his back will be sore for a while, and that he has undergone quite an experience, but now Jason and Aaron will have something to bond over for the rest of their lives. Aaron is a giver, just like Jason, and we are so thankful for his willingness to give what could possibly save my husband’s life.

If all goes well, Jason will be receiving a transplant very soon. And, if all goes well, Jason will share some similarities to his brother.

After a bone marrow transplant, the recipient won’t really know if it is working or not for three weeks. After that, it can still take months for it to grow and be stable. That’s a long time to be unsure of the success of the procedure. But if it works Jason could get Aaron’s allergies, and he most certainly will get the same blood type as his brother. Currently Jason is O-. In a few weeks or months Jason could be A-. If Jason’s donor would have been his sister, Jason’s blood type would have changed but so would his blood gender; his blood would have become female blood. No problems with that, just a neat fact.

So, today we celebrate Jason’s new birthday! Looking forward to the future!

On a less intense note, last night Jason’s upper lip starting swelling. They cannot narrow down the cause but it was pretty funny to see him bumble around here like Daffy Duck.

A Good Meeting - Dr. Peggy

*** This entry was written before Jason was admitted to the hospital for a transplant.

In order to get a transplant you must undergo a certain amount of pre-transplant testing to determine your health. A bone marrow biopsy, a breathing exam, and an arterial blood draw, as well as multiple blood tests are a few of the required procedures.

Although these tests are usually time-consuming and sometimes painful, this time the tests were wonderful.

When we walked into the testing room we felt so defeated.  Since death is listed as a possible side-effect, the idea of a bone marrow transplant is scary. 

The doctor began testing Jason and slowly the room became a little more comfortable as we opened up to her about our concerns, and she opened up about her family. In an hour or so we became fast friends with Dr. Peggy, a Christian, whose smile became impossible to resist.

Her sense of humor is witty and charming. She didn't tell us horror stories, or accuse us of being faithless. She didn't focus on the horrible current situation but rather talked about the positive results. She joked about her daughter's trip to Louisiana, and poked fun of her husband and son who recently lost their hunting bait to a bunch of rowdy squirrels. She made us laugh, not cry. And in those moments she honestly made us forget all of our problems. I hope to meet more people like this while we sit in the hospital room. What a difference a positive attitude, faith, and a friendly face can make!

We left that room, smiling, holding onto her business card and a piece of paper with her personal home phone number and email, as well as an invitation to attend church with her family on Sundays during my stay at the hospital. May God bless Dr. Peggy for turning a scary moment into an enjoyable one. 

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!