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 chemotherapy...talk 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!

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!

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!

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!

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.

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!

Round 1: CRUSHED

Thank you to everyone for the wonderful comments and support that we have received over the past few weeks. A simple thank you just doesn't seem to suffice for all of the prayers, thoughts, uplifting messages, meals, cards etc.
As far as updates go, we are about 3 weeks post round one of induction chemotherapy for transplant which we hope will happen by the end of the year. Chemo went well and Curt only had to stay in the hospital for 4 days rather than the 6 we had originally thought. He had wonderful nurses, and quite the VIP suite.

Grateful for great Nurses!

Curt was a trooper these past 3 weeks and is just beginning to gain back strength and has taken to reading his daily newspapers and babying that ever so spoiled rotten dog, Tanner. Chemotherapy is the cocktails that kills off cancer cells. Unfortunately, chemotherapy is often what we call "non selective". This means that the drugs (aka POISON) that is being pumped into his body are unable to distinguish between a cancer cell and a healthy cell. Because these drugs are non selective all cells die, including the cancer cells. What does this mean for Curt? Well along with the cancer cells goes his, immune cells, hair cells, blood clotting cells, skin cells...the list could go on and on.

Besides his flowing long locks, the most crucial and fragile cells relate to his immune system. Because his immune system is shot, it is often for his benefit that he does not come into contact with anyone who may be sick or have been around sick people. Think of him having a newborns immune system, except worse. Because Curt is so prone to infection even up to 3 weeks after his chemotherapy, his special appearances and autograph sessions will be limited in the coming months. It's not that he has resorted to a lifestyle of seclusion, but just has quite the anal retentive strict General Manager Oncology RN as his eldest daughter.

Today Curt goes back in for more lab work and a meeting with the oncologist which will decide when the next round of chemo will be done. Thank you again for the support you have shown our family. We couldn't get through this fight without each and every one of you!

Goofing around as usual!

The Journey to Day Zero and Beyond

Welcome to the documentation of Curt's Bone Marrow Transplant journey. This is the place where you will find updates, progress and even some education on what our family is to expect in the coming months.

In March of 2011, dad was diagnosed with stage IV Follicular Lymphoma. The big C had hit our family in a big way. Our family was introduced to this diagnosis as "slow growing, incurable, but mostly manageable".

Since 2011, dad has undergone multiple cycles of chemotherapy in attempts to send the lymphoma into remission. Even though we saw great response to the chemotherapy, the cancer continued to return, a littler quicker each time. Unfortunately/fortunately dad's oncologist has one last trick up his sleeve to attempt remission of the cancer. One which is not for the faint of heart, stem cell/bone marrow transplant.

This journey has been in the back of our minds for quite some time, and was something that we were expecting to attempt towards the end of September (after a family beach vacation of course). Little did we know, there were other plans in store.

Last week, dad returned to the oncologist to begin entertaining the idea of setting up a transplant "schedule", if there really is such thing. What we found out instead, was that his cancer was back and in a really big way. New areas of cancer were now present, and if we didn't start treatment yesterday (literally) his shot for transplant could be out the window. Some people say hard decisions must be given time; but ours only had about 48 hours. As a family + oncologist decided to pursue treatment ASAP if it still meant we could kick the crap out of this disease.

As of this Tuesday dad has started his Journey to what they call "Day Zero" in the transplant world...more to come on that later.
In order to be ready for transplant, dad's cancer must be as diminished as possible and he must have the lowest immune system response as possible, both difficult to obtain. In order to do attempt to meet both of these goals, dad's oncologist and transplant oncologist prescribed an intense chemo regimen, which would place dad in the hospital for at least 4 days. This same regimen will have to happen a total of 4 times before transplant can be considered.

Dad was admitted to the hospital last night and received his first of four doses of chemotherapy, named R-ICE, that he will get in the next 3 days.

Day 1: Had a few hiccups, as dad had quite the reaction to the Rituxan portion. As he has never had chemo in the inpatient (admitted to the hospital) setting, it was a much different experience than he was used to as an outpatient (in the doctor's office). Instead of taking 6 hours to infuse, the drug took almost 16 hours to complete which ended up setting the regimen back a day, but all looks alright thus far.

Day 2: Today's chemo consisted of three different drugs: Etoposide, Carboplatin and Ifosfamide.
Both the Etoposide and Carboplatin infused without any issues and as we speak, the Ifosfamide is currently infusing the course of 24 hours.

It is truly amazing what the body can withstand. I won't ramble on much longer, but want to thank everyone for the support and prayers we have felt this week. They have not gone unnoticed and they feel like a shield of armor against the battle we are facing.

Stick along for the ride! #cancersucks #thejourneytodayzeroandbeyond