Transplant Day +9

“Difficult roads often lead to beautiful destinations.”

Hey everyone, it’s transplant day +9!

I am happy to say that although today has been difficult, it has been better than yesterday! Although Brandon is still in a lot of pain, his pain has been better controlled with the PCA pump and an increased dose of pain medication. He has also managed to get a bit more rest today, which he greatly needs.

Unfortunately, he did spike another high fever after running low-grade fevers for the last few days. More blood cultures have been drawn from each lumen of his CVC and his arm to check for blood infections. He also had a chest X-ray done to check for a lung infection but thankfully that came back normal. The doctors have increased the dose of his antibiotics and will continue to monitor him closely. At this point in the transplant process it is very common to run fevers since his white blood cell count is still zero.

Today was the third day of G-CSF injections and we are anxiously awaiting the arrival of some neutrophils (white blood cells)! The stem cells should start to engraft any day now, meaning that we will start to see his white blood cell count rise. We’re excited to see those little guys in action!

Earlier today I was talking to my mom when she asked, “how are you?” I answered, “Well, I’ve had better days.” After a bit of thinking and hesitation I added, “But you know, I’ve certainly had worse.” Weeks like this are hard; they are mentally, physically, and emotionally exhausting. But when I get sad or upset about what is happening today, I remember everything we have been through to get here. There have been times that people and circumstances have tried to rip away our hope and our joy. There have also been times that instead of seeing a white blood cell count of zero; I have seen one closer to 100. So you know, despite everything that is difficult right now, I KNOW things could certainly be worse.

Of all the lessons that I have learned in this experience, perspective has been the most significant. Perspective on what’s important, what others are going through, and especially perspective on what a bad day really is. Regardless of everything that happened, today is not a bad day. Today is a day where for the first time in a year we have hope for a cure. Today is a day that we can celebrate just how far we’ve come. Today may be hard, but there are better days around the corner. We just have to fight a little harder to get there. So here’s to good days and even greater days to come!

Thank you all for your love and support. We love you all so much!

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Transplant Day +8

“Be strong now because things will get better. It might be stormy now, but it can’t rain forever.”

Hey everyone, it’s transplant day +8! Today has been one of the more challenging days that we’ve had in a while.

Brandon woke up early this morning with an excruciating headache and body pains. The doctors ran a lot of tests today to check for anything concerning, but thankfully everything came back normal. They have decided that the most likely cause of the pain is due to the G-CSF injections that were started yesterday. These injections can cause bone pain due to inducing over activity of the bone marrow. Unfortunately, the injections need to continue so that the stem cells can engraft and grow.

Brandon was started on a PCA pump (a pump that delivers a steady flow of medication) to help with the pain. Thankfully this has provided some relief. Unfortunately, it took many hours to set up so Brandon was in a great deal of pain for most of the day. To make matters worse, he was also running a low-grade fever on and off all day. It’s absolutely horrible to watch someone you love hurting so much, while you can only do so little. I am relieved that he is doing better this evening and I hope that he is feeling better tomorrow.

Today Brandon was also started on a treatment for cytomegalovirus (CMV). CMV is a virus that can cause a great deal of complications for people that are immunocompromised, which is why Brandon has been regularly tested for it since his hospital admission. The virus was detected on admission but the levels have continued to rise now that his immune system is nonexistent. The doctors have also confirmed that his stem cell donor was CMV negative, meaning that once his new immune system starts to rebuild, he will not possess any antibodies to fight the virus. Therefore, they have decided to start treatment for the CMV before Brandon even feels the symptoms. Brandon has been started on a new anti-viral medication to treat the CMV, and he will continue to be monitored for its activity. At this time it’s nothing to be too concerned about, as this happens to a large majority of transplant patients and can be easily treated.

Tomorrow is a new day and I am hoping that it will be much better! Thank you all for your love, prayers, and support. Today was just a little pebble in the road. Better days are coming!

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Transplant Day +7

Hey everyone, it’s transplant day +7!

I can’t believe its been one week since Brandon’s transplant and his re-birthday! It’s also been 2 weeks since his admission. Coming into this transplant we knew it was going to be difficult, but I am so thankful for how well he is progressing given everything that he has been through.

Today Brandon had his first injection of granulocyte-colony stimulating factor (G-CSF). These injections will stimulate the stem cells to begin engrafting in Brandon’s bone marrow. In the days to come we should start seeing his blood cell counts start to rise. I am SO excited to see what those amazing stem cells are going to do! Brandon’s white blood cell count has essentially been zero since before his transplant, so it will be exciting to see some healthy cell growth!

Brandon continues to improve day by day. We managed to get in almost a mile of walks around the ward and he was also up and out of bed for most of the day. He should really start to feel better as his blood counts start to rise over the next week.

Thank you all for your love and support! I can’t wait to share more good news tomorrow!

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Out for our morning walk =)

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We’re getting to know the 18th floor very well =P

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Rocking my Leukemia and Lymphoma Society shirt. I walk for Brandon. =)

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Transplant Day +7

Transplant Day +6

Hey everyone, it’s transplant day +6!

Today was another step in the right direction! Brandon’s nausea has almost completely subsided and his mucositis pain is getting better! Yay! We have also made it 2 days without any fevers! Things continue to look up!

Brandon managed to spend a large portion of the day out of bed and also walked a few laps around the ward. He is also getting his appetite back and was able to eat a few good meals throughout the day. He is continuing to feel better day by day.

Tomorrow Brandon will start getting doses of granulocyte-colony stimulating factor (G-CSF), which will enhance stem cell engraftment and stimulate white blood cell production. This means Brandon’s blood counts will start to come up and he will start building his new immune system!

The G-CSF will be given daily until Brandon’s absolute neutrophil count (ANC) rises above 500 cells per microliter of blood. Neutrophils are the most important white blood cell that act as the body’s first line of defense, protecting us from infection. Brandon’s neutrophil count will be closely monitored as we move forward and will serve as an important marker for the strength of his immune system.

Everything is right on track and progressing as planned. Brandon’s doctors feel that he is doing exceptionally well.

Thank you all for your love and support. I can’t wait to share more good news in the days and weeks to come!

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Transplant Day +5

Hey everyone, its transplant day +5 and things are looking up!

Today was MUCH better than the last few days. Brandon’s nausea and mucositis pain are finally being controlled with the right combination of medications. YAY! The doctors have also switched most of his medications to IV so that he can avoid having to swallow large pills, which is extremely painful.

Brandon managed to spend half the day out of bed and also walked three laps around the transplant ward. He also managed to eat a meal for the first time in 48 hours! And we’ve made it almost 24 hours without a fever! It’s the small  victories, y’all. =)

Today Brandon started on an anti-rejection medication called Tacrolimus that he will be taking from now on to prevent graph verses host disease (GVHD). As we move closer to his stem cell engraftment, this medication will help to prevent the cells from attacking his body.

Brandon’s doctors feel that he is on track and doing really well. We’re hopeful that he continues to improve and get stronger in the days to come.

Thank you all for your love and support. I can’t wait to share more good news!

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Lions, and tigers, and pumps! Oh my!

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Transplant Day +5 

 

 

 

Transplant Day +4

Hey everyone, its transplant day +4!

We have quickly learned that Brandon’s doctor was not lying when he said Brandon’s pre-transplant chemotherapy regimen was the “most toxic thing known to man.” The last few days have been challenging to say the least.

Brandon’s nausea is still persisting, even with doses of some of the strongest anti-nausea medications. Also, to make matters worse, he has started to feel extreme pain from the mucositis (the inflammation and ulceration of the mucus membranes of the mouth and throat) that was caused by his chemotherapy. He is barely able to eat and drink and will likely be started on IV nutrition soon. And as if this all wasn’t enough, he has been  running fevers all day (the highest one being at 103° F/39.3° C).

The anti-nausea medications have been kicked up a notch and he has also been started on pain medications for the mucositis. Unfortunately there is nothing they can do for his fevers since tylenol is too toxic for the liver and steroids can harm the new stem cells. They are continuing to draw blood cultures every 24 hours that he runs a fever to check for any new signs of infection. Everyone is doing their best to make him comfortable, but medications can only do so much.

Despite feeling so incredibly horrible, he managed to pull himself out of bed to walk TWO laps around the ward. He told me afterwards that those were the two most difficult laps of his life. But you know what, he did it. Have I told y’all how proud I am of him? His strength and motivation are absolutely amazing.

This is all to be expected at this stage after his transplant. Unfortunately he will continue to feel this way until the new stem cells start to engraft and rebuild his immune system. This will likely start to occur around day 10 to 14. Until then, we will continue to push through the bad days and focus on the good days that are right around the corner.

Please keep us in your thoughts and prayers as Brandon continues to fight through this extremely difficult time.

On a happy note, Brandon has his LAST DOSE OF CHEMOTHERAPY EVER today! That’s a pretty exciting thing. Better days are coming!

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Transplant Day +3

Hey everyone! It’s day +3!

Today was officially the most challenging day we have had since Brandon’s admission. The doctors kept telling us that the chemotherapy would eventually catch up with him, and it definitely has. Brandon has been running fevers all day and has been battling some extremely severe nausea. Today has been exhausting for Brandon, and myself as well.

At this stage his fevers are nothing to be too concerned about since all of the tests last night didn’t show any signs of infection. They are preforming more blood cultures this evening since it has been another 24 hours and the fevers are still persisting. This is all precautionary since Brandon’s immune system is nonexistent.

I am really hoping that the new antibiotics start to kick in overnight so that Brandon starts to get some relief tomorrow. He continues to be positive and in good spirits despite feeling so under the weather.

Brandon also had his first of two days of post transplant chemotherapy. This low dose chemotherapy is given to reduce the risk of graph verses host disease aka GVHD (where the donor’s cells attack the recipients body). Tomorrow will be his LAST DOSE of chemotherapy EVER!

Please keep Brandon in your thoughts and prayers. We are hoping he’s back to walking 3 miles a day very soon! There are better days ahead!

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Transplant Day +2

Hey everyone! We made it to day +2!

After a string of perfect days Brandon is starting to feel the effects of his weakened immune system. After running low grade fevers (anything lower than 101 degrees F and 38.3 degrees C) for the last 24+ hours Brandon finally spiked what they consider an actual fever. This means that Brandon’s body has detected something foreign that it wants to fight off. Unfortunately, due to the chemotherapy Brandon’s immune system is nonexistent so he is unable to fight off even the smallest of infections.

When a transplant patient spikes a fever there is a whole protocol that is carried out. Blood cultures have been drawn from every lumen (extension) of his CVC (central venous catheter) to make sure there is no bacteria in his line; he will also have a blood culture drawn from his arm for comparison. He has also been sent for a chest X-ray and other infection detecting tests. The doctors are also starting him on a new IV antibiotic that will hopefully fight whatever bacteria is causing the fevers.

This is all to be expected since Brandon’s immune system is completely nonexistent. He will have to be closely watched for signs of infection during this time period that his white blood cell counts are so low.

The doctors have also detected something called cytomegalovirus (CMV) in Brandon’s blood. CMV is a common virus that 90% of people have been infected with at some point in their youth. Once infected the virus lays dormant in your system and usually causes no harm after the initial cold-like symptoms. Unfortunately, CMV can make a come back if you become immunocompromised. Brandon’s doctors are going to start an IV antiviral medication this Sunday that should treat the virus before he starts to feel any symptoms. With proper treatment it shouldn’t cause any complications but the doctors will continue to monitor the situation closely.

Despite the fevers today we have still been rocking it! We managed to walk about a mile and a half and Brandon was up and out of bed most of the day. His doctors continue to be amazed by his progress and feel that he is doing extremely well. The minor complications he is experiencing are things that almost every transplant patient goes through, it’s just a part of the process. Brandon’s doctor reminded me today that these are little pebbles, not even bumps, in the road. =)

Thank you all for your love and support!

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Day +2

Transplant Day +1

Hey everyone! It’s day +1! We’re finally in the positive!

Thank you all for your love, support, and prayers yesterday for Brandon’s transplant. The transfusion completed a little before midnight without any complications.

Today has been positive overall, however I think Brandon is starting to feel the onset of chemotherapy side effects. This is around the time that most people start to experience severe nausea, mucositis (the very painful inflammation and ulceration of the mucus membranes of the mouth, throat, esophagus, and GI tract), and fevers from having no immune system. Brandon has started to experience a sore mouth and throat, worsening nausea, and has been battling low grade fevers on and off throughout the day. This is all to be expected given what his body has been through. Unfortunately things will probably get worse before they get better.

Despite feeling lousy Brandon has been up and active. We walked a little over 3 miles today around the transplant ward. Not too bad for someone that got a transplant yesterday! The doctors continue to stress the importance of physical activity, so Brandon is doing every little bit that he can. I am so proud of his strength and motivation, especially under such difficult circumstances.

The doctors continue to be impressed with his progress. He is doing EXTREMELY well for what his body has been through. All of his blood work shows that his organs are all working perfectly and are showing no signs of stress (this is amazing given the large amounts of chemotherapy he has received).

On days +3 and +4 (this Friday and Saturday) Brandon will get his last two doses of chemotherapy (EVER)! These will be two low doses of chemotherapy to lessen the risk of graph verses host disease, which is where the donor’s cells attack the recipients body. He will also begin an anti-rejection medication on day +5 (Sunday) that will lessen the risk as well. We are hoping and praying that the donor’s cells become comfortable in their new home and only go after any remaining cancer cells that may be lingering.

Although yesterday was a huge milestone, the fight continues. Brandon’s first +100 days after transplant are the most crucial as the cells engraft and begin to build Brandon a new immune system. His immune system will be very fragile during this time and he will need to be monitored accordingly. Please keep us in your thoughts and prayers as we push through this most important time.

We love you guys and will continue to keep you updated on Brandon’s progress!

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3 miles of walking today!

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Day +1

Transplant Day (Day O)!

Hey everyone! IT’S THE BIG DAY!

Today was a long day as we anxiously awaited the arrival of the guests of honor, the stem cells! Thankfully we had lots of love and support from our family and friends to fill the time, and cake, lots of cake. =)

Brandon’s donor’s stem cells arrived at the Houston airport this evening at 6:35 pm and were transported to MD Anderson for processing. 92 billion cells started their big journey at 9:44 pm as they started to transfuse into Brandon’s body. As I write this, the last bit of cells are entering their new home.

That little bag of cells has so much meaning. It is hope, a cure for leukemia, a new immune system, a re-birth, a new beginning, and a new life. It is what we have been dreaming, hoping, and praying for over the last year.

At times it seemed impossible. At times I wondered if we would ever get to this place. But because of our hope, strength, faith, and love we made it. We refused to give up and we refused to accept defeat. We chose to keep fighting when others told us it was pointless. We held onto our faith and our hope that there was a greater plan and purpose for our lives. We defied all odds and proved so many people wrong. We fought and will continue to fight for our life and our love.

We are also here because of the amazing people we have all around us. Without your love and support we couldn’t have made it. You held us in your thoughts and prayers and gave us hope and encouragement when the weight felt too heavy. You lifted our spirits and kept us focusing on the good days to come. Thank you all so much.

Today is a beautiful celebration of life and love. We thank you all for being a part of it.

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It’s Our Birthday!

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We had lots of cake to pass the time =)

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Day Zero!

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When the cells arrived on the floor!

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A miracle in a bag

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The Re-Birthday Boy

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This is the most beautiful birthday gift that I could have ever asked for