Day +29: Welcome Home

It's been a long few days.

This past Friday, on Day +24, Jason was discharged from the hospital. It was an emotional day and made for a very busy weekend.

On top of Jason coming home late Friday night, he also wanted to take the time to see family at the weekend Easter party. It was a great weekend and he even got to meet his new nephew. Now we are trying to rest and play catch up.

Since coming home there have been a few challenges. Jason's kidney function tests were not so fantastic the last time they were checked. I basically forced him to drink as much fluid as possible to help them. On Tuesday we had a doctor's appointment and they said that his kidney function is doing better. Apparently the fluids are helping.

Then, he needed to go on lots of walks for two reasons: his platelet count is in the millions (you read that right), and his lungs were filling with fluid periodically and he had a lung infection. With millions of platelets Jason is at risk for blood clots so the walking helps that problem. However, if his platelets do not start to slightly decrease he could be susceptible to bleeding. It is strange but when your body has too many platelets they can actually work as though you have too few platelets and then be at risk for bleeding. On Tuesday's appointment the doctor said that Jason's lungs were sounding better and better.

The past two nights were a lot better than the first nights. Neither of us got any sleep since Jason had constant low-grade fevers throughout the nights. His discomfort and sweating was tough to handle and if the fevers were to have gotten any higher then he would have had to be readmitted to the hospital. This is not uncommon but wouldn't have been welcomed after we had just returned home.

On Tuesday's appointment we discovered that the CMV virus in his stomach is decreasing so he will continue to be on that anti-viral medication with no changes to the dosage. His Tacrolimus level is not too high, and he is feeling OK overall.

It will be an interesting few weeks and months and year. The atmosphere at home is a little stressful because symptoms usually arise from seemingly nowhere. The past few days he wakes up needing to vomit some clear fluids but the rest of the day is semi-uneventful.

For now we have been warned repeatedly to avoid all crowds, any sick, any exposed to the sick. I am to clean the house with disinfectant often. Usually I wipe the counters, doorknobs, light switches, faucets, sinks, remote controls, phones, steering wheel, etc. Plus, I do the laundry in small loads to avoid any dirty clothes floating around. Pillowcases and sheets are changed daily (no, I did not change them every single day before this, I am not THAT impressive). And there are many changes to the foods we eat and how they are prepared. But overall we are doing well.

We do not have any results from the bone marrow biopsy that was performed last week but we are hoping that when we hear news it will be good news, that Aaron's marrow is producing and just taking its three months to a year to slowly take over.

I have been trying to finish personal projects but I have mostly been helping Jason, which was expected of me since the beginning. I was told that, as caretaker, I would be with him while he was in the hospital, and at least the first month home.

At this stage in the game Jason's biggest "problems" have been that he doesn't like the high volume of medications he has to take (it's a lot). And he feels weak when he walks for a little while but that has been getting better with every walk he takes (we take three walks per day, about 1/4 mile each). He also deeply misses his hair and beard and often wears Winter hats because his head is very cold. I have never heard him complain about being cold but this past week he has constantly needed heat sources and blankets. I have no problem with heat so I am enjoying this time that appreciates it because I know that soon he will want the A/C and then I will be living outside. Lastly, he finds it hard to sleep at night so he has to take numerous naps throughout the day to make up for the sleeplessness which he attributes to the medications.

Hopefully things will continue to go this smoothly in the future. We continue to pray and hope that this be our new beginning.

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 +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.

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.