December 22, 2010 Transplant Day!

How desperately overwhelmed I would feel today if I did not believe that there is a God who is very real and who is covering my family with the kind of protection only a loving father could give. I feel like we are caught in this terrible storm but we are tucked safely under the Lord's umbrella and its warm and cozy there. I don't feel frightened about what's going on around us because I just feel safer each day as our Lord pulls us closer and closer to Him. He has us in His hands and my family is exactly where we are supposed to be. I am just so thankful for my faith in Christ and I feel it so necessary to share this because I know so many people who seriously think God or his son Jesus are nothing more than a myth, a story you tell children who don't know better, like Santa Claus. They may think I am crazy zealot today but I just don't know how else to communicate how REAL my God is!

Throughout the last two months there has just been too many times where I have seen the Lord step in and provide a smooth path through a jagged, mangled cancer trail. To classify these as "coincidences" or "good luck" is simply ridiculous. Christ is real and He is putting His perfect plan into action through the people who give their lives to Him. Tom and I have made a decision to believe in God, period. The doctors on our floor treat hundreds of kids with cancers. Some live, some don't. They will be the first to tell you that it takes more than modern medicine for kids to beat their cancer odds. We continue to pray for wisdom in our doctors, and complete healing in our son, but want more for Christ to make himself known to those around us and everyone following our sons disease.

As far as today's events, Gavin went to pre-op at 7am and our elder Miles Brey met us there to pray before the procedure. Thank you Miles for being there! He wound up playing with Gavin and distracting him while the nurse got some vitals. Because Gavin has had some blood draws done the last couple times he went to the doctors, he is extremely scared of nurses, doctors and surprisingly band-aids. He fought the nurse to take vitals, and he fought me to get his gown on and kept asking if we could leave. Once I walked him back to the OR he started to cry and the nurse asked him if he wanted a warm blanket. He said "no" but she gave it to him anyway and he said "Thank you. Can I go know?" So funny. Then she asked if his name was "Gavin Brown" and he said  "No" (any other day sure that's me, but today I want to be somebody else). I held him while they put the gas mask on him and through some tears, he fell asleep. I gave him a quick kiss and left my baby in the hands of God and the medical staff.

I went to the waiting room and you have to register there so they can call your phone with updates. It took an hour before they actually began the procedure. They brought him out a few hours later and I got to see him right away. He was very groggy and just kept calling for "mama", which he only says when he's sick. I had mixed emotions. I was thrilled that they had the marrow and didn't want any time wasted getting it into Grayson, but I felt a little guilty that my other baby was in pain. Of course his pain was only temporary but his sacrifice is Lord willing what will save my other baby's life. The doctors let us know that it was a painful procedure for Gavin but that they did get a great marrow specimen and they were headed right to the lab to process it. Gavin and Grayson were 100% match for marrow but they are different blood types. I can't explain how that's possible but it just is. Anyway, because of this they had to process out all of Gavin's red blood cells out of the marrow sample. That was actually a blessing because we were able to spend time with Gavin in recovery and bring him upstairs to Grayson's room before the actual transplant started.  Here is a picture in the recovery room that Tom snapped right after they put him in my arms. A bit of an emotional moment for us.

After we were released from the recovery room we took Gavin right upstairs to Grayson's room where my mom and Tom's parents were waiting with Grayson. The nurses and everyone seemed excited and rightly so. This was a big day for our boys and the transplant process is not only time sensitive (has to be fully transplanted within 4 hrs after removal from Gavin) but there are risks involved. The ABO incompatibility (blood type difference) can cause high blood pressure and can also cause the red blood cells in Grayson to crystallize in the kidneys and cause blood in the urine and at worst case, kidney failure. I posted a video of the actual transplant which is very anti-climatic. Here is a video I shot during the actual transplant. It is not the best video because I was holding Gavin while I was shooting it. The actual transplantation only took about an hour. We were super blessed to have our best, good nurse Kasey doing the transplant. She is so good to my baby and to me. She is not assigned to our case, but tries to get us as often as possible. I just know God worked it out so that she could be there with us that day and I am thankful for that.

Transplant: http://www.youtube.com/watch?v=f1ER8zLrOxs

Even with the processing, the lab was not able to get all of Gavin's red blood cells removed so for a while Grayson's blood pressure was very high and he did have blood in his urine, but fortunately he recovered by the end of the day and returned to a normal blood pressure and normal urine. YEAH! Transplant Complete!

Here is a short clip of Grayson post-transplant: http://www.youtube.com/watch?v=k1SG7cjcLk0

I just want to thank everyone for their prayers. I know that so many people were praying for this day and it was evident the entire day that God's hand was over our family.

Since today is actually the day after the transplant I want to also let you know that Gavin is up and running around and back to his old self. His bandages came off this morning and beside a little bit of a limp (temporary), he is just as active and ornery as ever. Grayson has been sicker today than he has ever been before. He is having a lot of nausea and stopped eating and is vomiting every hour. It is exhausting changing clothes and sheets all day but I am sure it is more exhausting for his little tummy to be heaving all day. Please pray that this stops ASAP and that he starts taking breast milk again before they have to put him on TPN (IV nutrition). This will probably wind up happening anyway at some point in the next 30 days, but the sooner they go on TPN the greater risk of liver damage, so we want him to eat on his own for as long as possible.

Just so you all understand what will be happening in the next month or so, Grayson is now going to bottom out health wise because his own marrow is no longer producing white cell, red cells, or platelets (at least we hope), and Gavin's marrow will take about 30 days to start growing and appearing in Grayson's marrow. Because of this, Grayson will have no immune system and no way of fighting off even the simplest of colds and infections. He will most likely develop mucositis and stop eating. There are a host of other side effects that he will be at risk of developing which I have put under a separate post called prayer requests. The next 30-60 days are going to be very crucial to his survival. The transplant itself was exciting but it was only the beginning of our journey to healing. Please continue to pray for my baby during this time. Around the 30 day mark, Grayson will have a bone marrow biopsy (under anesthesia) to gage whether or not Gavin's cells are growing well and how much if any of Grayson's marrow survived the high-dose chemo. Pray that we have 100% Gavin marrow and that all of Grayson's marrow is gone. If it is it will be a good sign that the transplant was a success. With cancer they can never really say that you healed and done treatment, but have told us that once we have 2 years worth of bone marrow biopsies that say 100% Gavin marrow, the risk of relapse is a very small possibility. We will have the biopsies done at 30 days, 60 days, 120 days, and so on for the next two years. The first one and the second one are just most important because if Gavin's marrow is only 80%, it will indicate a failed transplant. It needs to be at least 90% of above and the second needs to trend higher than the first in order for them not to be worried.

Lord, I have so many things big and small to give thanks for. Thank you for my mother and my in-laws and their willingness to take off work to be there to help and support us the whole day. It was great to have so many helping hands. Thank you for allowing us to have Kasey during our transplant. Thank you for Kasey's heart and her kindness that goes above and beyond her responsibilities. Thank you for my son's, ALL of them. Thank you for providing a 100% match in Gavin. I am still in awe of this. The doctors told us it was such a small chance but you don't work off of their percentages. No one is able to back you into a corner because regardless of what happens during this fight against cancer, you have already won. Thank you for Miles Brey and his willingness to drive down to Hopkins in the early morning to support us and pray with us. Thank you for allowing Gavin's surgery to go well and for no adverse effects of anesthesia. Thank you for the time I got to spend in the recovery room just holding my firstborn. I have not been able to spend much time with him and I was so grateful for those sweet moments when I got to just sit and hold him. Thank you for allowing Grayson's transplant to go so well and for no major adverse reactions to the transplant. Thank you for the nap I got to take with both boys after the transplant. Sleep is just not a realistic expectation when you have a sick baby and are living in the hospital but it was so nice to have the time of rest yesterday afternoon. Thank you for the many people praying for my family and the opportunity to share my faith as I walk through this valley with you. You are so faithful to provide everything my family needs exactly when we need it and I can't keep from singing your praise because your love is AMAZING!