Saturday, January 2, 2016

Roller Coaster Ride

Today marks day +28 since Curt's stem cell transplant. This number is a huge deal, as he is close to a month marker. The days seem to fly by as nursing care really is 24 hours a day. Because of this hard work, it is often hard to rejoice in the growing positive days. Looking back on Curt's days in the hospital, he has made progress.

We were able to bring Curt home on Christmas eve, and it has definitely been a blessing to be out of the hospital and in the comfort of our own home.

With this whole process, many "bad days" outweigh the good, but again we are thankful he is home. Curt contracted the CMV virus which is relatively common for transplant patients. This is a virus that many people carry dormant in their bodies and are never affected by it. Because Curt takes immunosuppressants multiple times a day, this puts him at risk for anything and everything.

CMV has definitely set us back on our hard work we have put in at home. Before the virus, he had one day where he at least took a bite of something at each meal. Since the virus, we are back to none or maybe one bite of food on a good day. The virus makes him extremely fatigued, but unable to sleep. It makes him nauseated, achy, new mouth sores and presents as a rash on all parts of his skin, bottom of the feet included. We are hoping that the new antivirals prescribed will start to take hold of the virus and make it dormant once again.

Now for some positive things...our last appointment at the clinic proved fruitful for Curt. The doctor was able to decrease some of his medications (average 15 pills a day) which we hope will cut down some of the side effects. Dry mouth is one of Curt's worst issues as his mouth cells attempt to heal. The doctor also told us that we no longer had to go to clinic 3 times a week, but now once a week. This was great news as our morning routine prior to clinic often takes almost two hours prior to the drive to Dallas.

Curt still remains on the IV nutrition as he is unable to eat. We are hoping to speak with the doctor on Monday about the next steps in nutrition.

Lately we have been reading blog articles to dad which describe different peoples journey after stem cell transplant, and this seems to help. A lot of people say they don't even begin to "feel human" again until days +50 and on. Many people also describe this process as one that could take up to two years for full recovery of symptoms...WOW. I don't think any of us were prepared to hear that. It was definitely a shock.

For now, we savor the positive moments, and push through the sleepless nights praying for a better tomorrow. Thank you again for your support, this process has shown my family that there truly are good people in this world.

Friday, December 11, 2015

The hardest week

Today marks +6 and I can tell you it is a day that has taken is sweet time getting here. As I mentioned in the last post, this week will be the hardest week of Curtis' life, because he is essentially fighting for it. The motto of a stem cell transplant is "take you close to death and bring you back to a new life". As many times as we have heard this before, it is hard to watch at times.

This weeks marks the lowest point of Curt's blood counts. All of his own bone marrow is being wiped completely out in order to make room for the new and improved. With this, Curt loses all energy, blood cells and most importantly his immune system. White blood cells are the infection fighting cells in your body and as of today Curt literally has 100 of them floating around in his body. You and I generally have anywhere from 8-11 THOUSAND. Without a defense system, Curt feels achy, tired, and is incredibly susceptible to any kinds of germs. 

Not only are his counts low, but remember how I said chemotherapy and radiation kill EVERY kind of cell? This includes cells in Curt's mouth, GI tract and skin. Because of the loss of cells, Curt is at risk for mouth sores, and has already been dealing with over a week of severe nausea. These few things make for a definite loss of appetite and thus he has already lost 10 pounds.

Oh and believe me, it doesn't stop there! To prevent any rejection of this bone marrow, Curt will receive an additional 3 doses of a different about kicking a guy when he's down. 

Because of this significant weight loss, the dietician and doctor agreed that IV nutrition would need to be started. This nutrition is called "TPN" Total Parenteral Nutrition. It is basically a concoction of essential nutrients, sugars and fats to help prevent any more weight loss. It will not make him gain weight, but hopefully maintain and prevent any further weight loss. 

Needless to say, the big guy could use some encouragement as the minutes tick by so slowly, and he very rarely has relief from his aches, nausea and fatigue. 
Praying for a light at the end of the tunnel as we hate seeing him so frail!

Tuesday, December 8, 2015

12/5/15 A day to remember forever!

Coming to you from day +3!

Curt's transplant went beautifully, as expected and we cannot thank you enough for the outpouring of love and cards. Curt's room is the best decorated, and his windowsill is covered in cards from so many people near and far.

It was a magical moment when the donor's bone marrow began to infuse through his IV. We all were able to say a prayer together, and then sang happy birthday. Even Curt's nurse participated in the prayer and singing...SO COOL!

We learned a few things about the transplant that I found absolutely amazing. The donor was able to donate 2.9 million stem cells PER 1 kilogram of Curtis' weight. Without having you do the math, that is roughly 233 MILLION cells that were transplanted into Curt's body. It was fascinating to my nursing brain that we were even able to see the individual cells going into his IV line.

We also learned that the donor probably had to do multiple donations over the course of multiple days. Our family was again in awe over the amount of work that this young man had to go through in order to donate his stem cells for another man who he has never met, thousands of miles away.

The transplant coordinator told us that we must wait a year before being able to contact the donor. In the meantime we are able to send an anonymous letter to him, through the coordinator, but it cannot have any names, locations or clues that could lead the donor to us.

Unfortunately, the hard part isn't the transplant, but the healing from all of the chemotherapy and radiation Curt endured prior to the transplant. With today marking +3 he is right around his lowest point, and will hopefully begin to feel some improvement by day +8 which is this Sunday. It has really been hard, as the time seems to pass so very slow for him. Please lift him up in prayer, that he continues to have the drive to fight, as well as the stamina to endure this week. It is definitely the hardest week of his life.

Please let me know if you have any questions about anything, and I will meet you back in this space soon for more updates!

Friday, December 4, 2015

Day -1...again

Welcome back!
Wanted to give everyone an update on Curt's journey. As you learned in the last post, Curt has undergone two days of high intensity chemotherapy and today marks his 5th and 6th total body irradiation doses.

Total body irradiation is the other part of his treatment "cocktail" before the transplant. Twice a day, Curt goes into a small room where the entire room is filled with radiation which is hopefully erasing the last signs of cancer. These sessions last for approximately 30 minutes and often leave curt feeling drained and nauseated.

We have struggled with getting his nausea under control, and the only medication that seems to work is making him sleep. Because of this, he was unable to eat anything yesterday. He could really used some focused thoughts and prayers that he feels some relief from the nausea. Often times you will see a transplant patient come out of the hospital weighing at least 10 pounds less, as all of the side effects really take a toll on a patient's nutritional status.

Now for the big update! Curt's bone marrow transplant doctor is pleased with how the treatment is progressing. He also let us know that the transplant would be moved back to Saturday. The reason for this is, the donor's cells will not arrive to Dallas until 3:00 am Saturday morning therefore unable to be given until Saturday afternoon. Curt was pretty bummed that it was pushed back a day, but the doctor said this is extremely common, and we all know there is a reason!

I think it will be beneficial because he will not have two radiation treatments right before transplant and he will hopefully get a bit of a rest, before he will start different chemo medications to prevent rejection of his new cells.

Thank you all for your comments and prayers! If you were unable to pop a (birthday) card in the mail for Curtis, now's your chance! Since he is unable to have any visitors in the room, your love through mail would definitely brighten his day.

Baylor Cancer Hospital
Curtis Freeman C718
3500 Gaston Avenue
Dallas, TX 75246

We are so thankful that this day is almost here, and I look forward to updating everyone on how tomorrow goes! December 5th sounds like a great day to all of us!

Tuesday, December 1, 2015

The journey is here!

Hello friends!
Coming to you from Curt's hospital room in the bone marrow transplant unit (BMTU) at Baylor in Dallas. He was admitted on Sunday (-5) for his "transplant adventure".

Today is what we call -3. This indicates that Curt is three days away from transplant this coming Friday. As you learned in the previous post, transplant day is called "Day 0". This is the day that Curt receives his new immune system, thus they call it a second birthday...cake included.

Days -4 and -3 are being filled with chemotherapy, walks down the long hallways and even an exercise bike or two. The physical therapists were insistent that he keeps up with his six pack and biceps...ha ha ha.

Days -2 through 0 will be filled with total body radiation twice a day. Think of it as a little too much sun on the beach in Mexico...if only! The radiation along with the chemotherapy are the perfect cocktail (Jose Cuervo) to kick the rest of his cancer to the curb. Although it may not sound like a challenging task, this regimen brings lots of side effects which we are trying to keep at bay for as long as possible.

We thank you for your continued support, prayers, calls, texts and thoughts. They do no go unnoticed. Since Curt is unable to have visitors during his "journey" we encourage you to send mail to cheer up his day...maybe even a birthday card!

Baylor Cancer Hospital
Curtis Freeman C718
3500 Gaston Avenue
Dallas, TX 75246

December 4th will be a day that our family forever celebrates and is forever thankful for as it gives our guy another chance to show cancer who is boss!

Friday, November 20, 2015

What is Day Zero?

I have received many questions regarding what exactly "Day Zero" is, in regard to Curt's journey.
When a patient undergoes transplant, there are many obstacles that must be conquered before a transplant can be received. I talked a little bit about it in the last post, but basically in order to receive a transplant, the recipient's immune system must be as low as possible. 

You see, the human body is brilliant and knows when something foreign has entered it. A healthy immune system will recognize the intruder and attempt to rid the body of it. We can see this in the case of an infection. The body senses that something abnormal is in the system, it increases it's soldiers (white blood cells), gets angry (produces inflammation and warmth), and attempts to rid the body of the infection (drainage). 

Well in the case of a transplant, we never want to recipient's body to know that there is a foreign body inside of it. In this case the foreign body will be the donor's bone marrow. In order to make Curt's body accept this marrow as his own is to kill the immune system so that it is too weak to even notice the donor's marrow. This process is only able to occur with the chemotherapy, radiation and immunosuppressants. Curtis will actually have to continue to take immunosuppressants for the rest of his life in order to prevent his body from rejecting the donor's marrow. 

Now as you can see, there are many obstacles that sit in the way of transplant and that is why we call it a journey. The day that Curt receives the transplant is considered "Day Zero". It's almost as if he will have a new birthday. Each day after transplant is counted as +1, +2, +3 etc. The farther away from "Day Zero" Curtis can become, the less likely his body will reject the transplant, and the closer he will be to remaining cancer free.

Because Curtis' immune system will be so weak, and each day counts, he will be unable to have visitors in the hospital as the risk for infection at this time is incredibly high. Being in a sort of isolation will be difficult, but that is where we ask that mail take place of your visits. As soon as we know the address and room Curtis will be in for the duration of the transplant, I will post here for your information.

You didn't know that you would be getting a science lesson through this post did you?

Please let me know if anyone has any questions that we can answer for you.

Monday, November 16, 2015

Transplant Month is Here!

Apologies for the lack of posts these past couple of months! 

After round 1 our family was able to take a well deserved vacation to Myrtle Beach SC, for some rest and relaxation! We were so thankful that Curt's oncologist allowed us all to take this trip and make some beach memories. We were also able to celebrate Curtis and Lori's 30th wedding anniversary as well as Joseph's 30th birthday! 

Quick Recap:
Curtis completed a total of 3 rounds of R-ICE chemotherapy since the last update. Overall he had the worst side effects from round 1 and round 3. Thankfully round 2 was a dream and Curt quickly recovered his counts and got back to his daily routine quicker than usual.

These three rounds of chemo are called induction chemo prior to the bone marrow transplant. In order for Curt's body to have his body accept the transplant as well as prevent further cancer from returning, it must be completely destroyed (the cancer that is).

After the three rounds were completed, he went back for a repeat PET scan which is a test that basically takes a picture and highlights any residual cancer. The purpose of the repeat scan was to identify how well the three rounds of chemo had worked. 

Unfortunately, the cancer had only reduced by 30%, which baffled our family at first. After speaking with the team of oncologists, they were actually pleased that the cancer responded at all. 
We were still anxious as we were told that his body must be virtually free of cancer prior to receiving the transplant. 

Thats where Curtis' next journey comes into play. The Monday after Thanksgiving, he will be admitted to the hospital in Dallas for a week of high dose chemotherapy as well as high dose radiation therapy which should zap the rest of the cancer that chose to hang on. After this week, dad will hopefully be able to receive the transplant. 

Stay tuned for more details about Curt's donor, the process, and his journey to day zero and BEYOND!

Thankful for all of you!