Miracles

It has been nearly one year since I wrote on this blog and there is a lot of information that I will be sharing with you soon. This year has been incredibly difficult and I plan on providing updates about Jason again. Unfortunately there is not a lot of good news I can share with you. We are going through more tough times and Jason really needs your prayers for his healing.

In addition to prayers, I am asking for something else. Would you please consider sharing with me your true stories about miracles that have happened to you, your family or your friends? As I have stated, this year has been tough for us. It would be wonderful to read some positive true miracles!

Please share your stories with me by emailing this address:
healmyhusband@gmail.com

I am hoping that we will be encouraged by your stories as we continue hoping for our own miracle.

God bless all of you and thank you for your prayers.

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 +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.