This is the fourth night in a row that I am sitting in front of my laptop, wanting to write an update yet struggling to do so. I am praying that God will give me the words to type so that I can be encouraging to all those praying even though some of what I have to say is probably hard to read.
Christmas Eve- Tom, Gavin and my in-laws (Jo and Ronnie) came to the hospital to visit. Grayson had been throwing up a lot and had entirely stopped eating table food. His white cell counts had also dropped below 500 which means he was and still is neutropenic (no immune system). There were only 4 patients on the entire oncology floor that night so we were able to go out of the room and set up a nice seafood dinner in one of the conference rooms. The nurse Joanne was great at setting all that up for us and tried to make our Christmas Eve family time as nice as it could be in a hospital. We were in a conference room with hospital equipment all around us and some carry-out boxes. Gavin refused to eat and instead ran circles around the table and tried to push buttons on the surrounding equipment. Grayson sat for a little while in his booster but started fussing and then throwing up. Tom and I hadn't even eaten and we had to take Grayson back to the room to clean Grayson up. Our dinner felt like wasted effort. My in-laws were a huge help in trying to orchestrate a family meal and incredibly patient with the reality that it just wasn't going to happen. Anyway, we did get to eat our cold seafood eventually but Grayson was just very sick to his stomach that night. It was sad when everyone had to leave. They all went back to spend the night at my in-laws and Grayson and I stayed at the hospital. I hated seeing my family leave. I also hated the elevator doors that night. They seemed like scissors cutting our family in half as Gavin and Tom got in and Grayson and I stayed behind. Then I walked back to my room to hold my sick baby for the rest of the night.
I have to say that I do feel blessed for every night that I get to hold my sick baby.
On Christmas day ~ Grayson's First Christmas ~ he and I woke up alone in the hospital room and he seemed like his normal self other than the fact that he hadn't nursed much through the night. His appetite had been steadily decreasing since we had started chemo so I wasn't surprised. The hospital has something called Santa's Workshop and Santa comes around on Christmas Eve and delivers stockings full of small toys and then a few larger presents to each of the kids on the floor. I tried to take a video of him pulling the paper off his presents but while I was taping, he puked, so I didn't want to post that one. I did take another of him afterward while he was playing with his new toys. This hospital is extremely generous and we have received so many gifts just because we are on the cancer floor. The nurses told me if we have to be in a hospital on Christmas, this is the place to be because everyone loves to give to the bald headed kids. Anyway, he got some neat toys and this was the last video I took of him looking happy and normal. It didn't feel much like Christmas morning but I didn't dwell on that too much.
Christmas Morning~ http://www.youtube.com/watch?v=Gln__7t4OGo
My sister Andrea and her husband Kris came to visit me and brought a huge Rubbermaid container of snacks for me to have at the hospital. Plus some cool insulated cups from Kris' golf club that I have been wanting for a while. You made my day Kris! Tom and Gavin arrived a little after that and stayed the day with me. That night I was changing Grayson's diaper in his crib and he was talking to me and kicking his feet and seemed happy, but when I went to pick him up, he sort of grimaced and arched his back and he quickly turned blue and his eyes rolled back and he went limp. It was very different from his previous breath holding spells and it turned out he was having a seizure. The nurse was fortunately in the room and hit the code button so a doctor was in the room within 30 seconds. Tom and I just held him calling his name and trying to get him to breath. He was blue for a good 40 second and even the doctors hands were shaking as she put the oxygen mask on him and called for help. He started breathing slowly and his color started coming back but he just sort of whimpered and seemed very different. He opened his eyes up eventually but still seemed lethargic, sleepy, and confused. They rushed us to a CT scan and x-ray and praise God they were both clean. The doctors still aren't sure why he seized but we are now hooked up to additional machines 24/7 to monitor him more closely. I am sad to say my Grayson has not yet returned to the normal happy baby that was in the video Christmas morning. The seizure didn't cause any real changes in him, but was just the start of seeing outward signs of the disease wreaking havoc on the inside of his body. I held him all night long and Tom stayed with us. My poor Gavin was a bit traumatized because he was in the room during all of this. He kept telling the doctors to "Get off my baby Gwayson!" He'll be fine, but it made me sad that he was there for that and Tom and I decided the hospital room was no longer a place for long visits with my three year old.
The next day Grayson's hair started falling out. He would lean against my shirt and it would just be covered in his bright blonde hairs. He is a baby so the hair falling out wasn't a big deal for his image; it was again an outward sign that he really was sick inside. He had looked so good for so long it was almost hard to believe that there really was anything wrong with him. He didn't want to get down and walk or play with his toys. He just wanted to be held and he just wouldn't smile for us. There were times when he would be looking at us but seemed lost in his gaze. He was very fuzzy but not very loud about it. He stopped cooing and baby talking and was just quiet all day. The nurses told us that mucositis had most likely set in and he was feeling "your worst sore throat times 10". He didn't eat at all that day and they started IV nutrition for him which looks like a bag of milk and a bag of Gatorade that goes in through his central line. They also started him on a morphine pump because the pain would only get worse. They have since changed the drug from morphine to some other narcotic because Grayson was scratching his face due to "itching" for the last 2 days which is a side effect of morphine.
He did wake up one afternoon long enough for Image Recovery to come buzz his head. When you get chemo your hair falls out piece by piece and it was itching him and getting in his face so I went ahead and had them shave it. Here is the video if you care to see my baby's first haircut ~ http://www.youtube.com/watch?v=7HMTjl4l2RE
I taped it because it was a milestone. I smiled in the video not because I was happy about what was happening but because as a mom you provide comfort to your baby. Your tone sets the mood. I didn't want him to be scared of the clippers so I smiled and smoke happily to him when inside I wanted to cry. Not because I care about his hair but because sometimes I still just can't believe my baby has cancer. His hair is falling out because the only way to treat cancer is to poison his body with chemicals. The pain he is feeling from mucositis is worse than any pain I have had to endure and he is being forced to endure it without any means to communicate his pain. I hold him all the time for the majority of the day and night and he just looks up at me with a pained look and helpless eyes. He has no idea why he is in pain or why he is in this room all the time or why he can't see his dad and his big brothers or why he keeps throwing up and feels so bad. It really sucks! (Yes mom, I know you hate that word). I am sure Job had to have thought the same thing when all his kids were killed, his wealth was gone and he was sitting alone with painful boils all over his body. But Job continued to trust in the Lord and so will I.
I had to write about the depressing stuff because if all I ever wrote about was the things I was thankful for during this time, than I wouldn't be being honest. A friend of mine who happens to be a nurse on my floor reminded me tonight that Christ was scared on his way to the cross. He was scared, he was sad, he had doubts, and he cried out to His Father. That is such an important piece of Christ’s redemptive works on the cross because it showed his humanness and complete submission to the plan that God the Father had laid out for him. God has laid out a plan for my baby and for me and for my family and though I feel so vulnerable in my humanness and in the humanness of my baby I know that God is my refuge and I will take comfort in his everlasting arms.
Thursday, December 30, 2010
Thursday, December 23, 2010
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!
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!
Wednesday, December 22, 2010
Prayer Request for December 22
This is Rebecca Merson. Pam and I spoke around midnight Tuesday evening. She will be posting to the blog again soon but in the meantime has asked me to send out a specific prayer request for Wednesday.
Most of you know that Gavin will have the bone marrow procedure at 9:00am Wednesday morning. Please pray that the procedure goes well, that Gavin isn't in too much pain post surgery and that the transplant to Grayson will be successful. Grayson won't receive the marrow until later in the afternoon and when he does it won't be surgical but rather via his IV pole. So truly, it will be a tougher day for Gavin than Grayson, so please cover both boys in your prayers! Pam will be able to be with Gavin all day which will be a great blessing as he will need her for comfort as he recovers from what could be a painful surgery.
Tom and Pam had a consent meeting Tuesday where doctors basically explained that the bone marrow transplant will only be successful if most of the JMML cancer cells were eradicated from Grayson's marrow during the 20 or so doses of chemo he has received thus far. These doses have been extremely potent in hopes that most (and prayerfully ALL) cancer cells have been destroyed. The concern is that JMML is so rare and its cells so aggressive that often it is resistant to chemo. Please be in prayer that the high doses of chemo already administered to Grayson have wiped out the infected marrow and that Gavin's transplanted marrow will replace in Grayson what needs to be replaced. A lower dose of chemo (called pulses, I believe) will continue after the transplant to continue to destroy the JMML cells and allow Gavin's transplanted cells to flourish as Grayson's new marrow. Pray that God would deliver a 100% replacement. If a certain percentage of Grayson's marrow is left over, the JMML cells are so strong that they could regrow and overtake the new, healthy marrow.
Wednesday is a big day for the Browns because it marks the start of a waiting game. It won't be known in full for 30, 60 or even more days if the marrow is successfully replaced. Pam said that usually after 2 years of re-testing it is unlikely that the leukemia would return in healthy marrow. Please Lord grow this new, healthy marrow in this sweet little boy!
Pam is resting in the hope that the chemo has done its job thus far and that the transplant will be successful. That trust and hope comes from the Lord. Her spirits were high and even though Grayson felt sick today from the chemo, he has done incredibly well tolerating everything thus far. Pam says that is testimony that the Lord is carrying her son in His arms.
Please lift all the details of Wednesday's procedure as well as the pending results of the transplant. Specifically pray that no leukemia would remain in Grayson's marrow and that Gavin's marrow will flourish in Grayson's body with no complications, and that Gavin is spared significant pain from the procedure. God is so good! Thank you for being prayer warriors...Pam will be in touch soon!
Most of you know that Gavin will have the bone marrow procedure at 9:00am Wednesday morning. Please pray that the procedure goes well, that Gavin isn't in too much pain post surgery and that the transplant to Grayson will be successful. Grayson won't receive the marrow until later in the afternoon and when he does it won't be surgical but rather via his IV pole. So truly, it will be a tougher day for Gavin than Grayson, so please cover both boys in your prayers! Pam will be able to be with Gavin all day which will be a great blessing as he will need her for comfort as he recovers from what could be a painful surgery.
Tom and Pam had a consent meeting Tuesday where doctors basically explained that the bone marrow transplant will only be successful if most of the JMML cancer cells were eradicated from Grayson's marrow during the 20 or so doses of chemo he has received thus far. These doses have been extremely potent in hopes that most (and prayerfully ALL) cancer cells have been destroyed. The concern is that JMML is so rare and its cells so aggressive that often it is resistant to chemo. Please be in prayer that the high doses of chemo already administered to Grayson have wiped out the infected marrow and that Gavin's transplanted marrow will replace in Grayson what needs to be replaced. A lower dose of chemo (called pulses, I believe) will continue after the transplant to continue to destroy the JMML cells and allow Gavin's transplanted cells to flourish as Grayson's new marrow. Pray that God would deliver a 100% replacement. If a certain percentage of Grayson's marrow is left over, the JMML cells are so strong that they could regrow and overtake the new, healthy marrow.
Wednesday is a big day for the Browns because it marks the start of a waiting game. It won't be known in full for 30, 60 or even more days if the marrow is successfully replaced. Pam said that usually after 2 years of re-testing it is unlikely that the leukemia would return in healthy marrow. Please Lord grow this new, healthy marrow in this sweet little boy!
Pam is resting in the hope that the chemo has done its job thus far and that the transplant will be successful. That trust and hope comes from the Lord. Her spirits were high and even though Grayson felt sick today from the chemo, he has done incredibly well tolerating everything thus far. Pam says that is testimony that the Lord is carrying her son in His arms.
Please lift all the details of Wednesday's procedure as well as the pending results of the transplant. Specifically pray that no leukemia would remain in Grayson's marrow and that Gavin's marrow will flourish in Grayson's body with no complications, and that Gavin is spared significant pain from the procedure. God is so good! Thank you for being prayer warriors...Pam will be in touch soon!
Sunday, December 19, 2010
Sunday Funday in the Hallway, December 19, 2010
Here is a link to a youtube video of Grayson in his walker in the hospital. He is receiving his 19th chemo treatment during this video and it's not keeping him down. God is so good and we are in awe of how well He is allowing Grayson to tolerate his chemo treatments. Thank you all for your diligence in praying for our sweet baby boy. God is so faithful to answer our prayers.
http://www.youtube.com/watch?v=XbeI9g3xr40
http://www.youtube.com/watch?v=XbeI9g3xr40
Friday, December 17, 2010
Thursday, December 16, 2010
My husband informed me my date for yesterday was wrong. All my days run together here but I fixed it so that Wednesday was the 15th instead of the 14th :)
Today, Thursday the 16th was just another day under Grayson's belt. He finished his last dose of Busulfan (16 doses total) this morning and received his first dose of Fluderabine at 2pm this afternoon. He tried to pull out his central line today. Not on purpose but the tubes were not pinned up to his shirt at the time and he grabbed it and yanked which made him cry and me cry because I thought he pulled it out. Fortunately he only tore a stitch and while it did move the line/tube out of him a little, they took an x-ray and it showed the line was still central which meant no surgery to repair. It does mean that we really need to watch and make sure that it doesn't get caught on his foot or that he doesn't grab it again which is not easy with a busy 10 month old. I need to figure out a clever way to hide the tubing while it’s still attached to the machines and still give the nurses access to them. Any ideas?
I got to see my Gavin today. My husband and mother also but my little boy just wanted me to hold him the whole visit. That was the most wonderful part of my day today. Hugging my firstborn who is about to give something of himself to his baby brother to save his life. I am just thrilled and amazed that this is even able to happen. The nurse told me today that whatever Grayson's blood type is now will change to Gavin's after the transplant as well as his immunity identity. Anything that Gavin is allergic to or immune from, Grayson will now be allergic to or immune from. Pretty cool! Although that means neither of them can have PB&J's.
My husband brought Grayson's walker which he can actually sit in and walk around in with his IV pole in tow. Of course my husband a.k.a. MacGyver, created an attachment to the IV pole with rope and carabiners that all the IV pole to hook to the walker or my belt loop so that he can pool around his own IV pole or I can carry Grayson and tow the IV pole behind me so that I have a free hand. The nurses were in awe of this clever system as we strolled the halls during our usual have-to-get-out-of-our-room laps. Did I mention how ingenious my husband is? So thankful for his craftiness.
The only other event today was that he has to take an antibiotic by mouth twice a day as a preventative measure and he keeps throwing it up. They don't make this antibiotic in IV form. Unfortunately he had to miss his evening dose because we tried twice to get it in him and both time it came right back up even with his anti-nausea meds already delivered. That stunk because if he winds up not being able to take this drug, we have to move to the less effective ones which don't work as well to prevent the pneumonia he is at risk of developing after transplant. Please pray he is able to stomach the Bactrim tomorrow morning.
Thank you Jesus for my husband. You have blessed me with a man who knows you and desires not just a continued relationship with you but a deeper understanding of who you are and what you desire for his life. I am so thankful for his creativity, resourcefulness, and problem solving skills. Thank you for our church and the wonderful people that you have put in our lives as role models and friends. I want to thank you specifically for the Meyers family who continues to bless us and our son Mason. I ask that you bless the time that Mason gets to share with Annette, Mike and their sons every Wednesday. Thank you for protecting Grayson's central line today. Thank you for allowing me to have a special time with Gavin today and that he was willing to let me snuggle with him for a while. Thank you for my mother and mother-in-law who are giving up so much of their time and energy to come and be the caretakers of my children and house while I cannot. I am truly blessed by their sacrifices.
Today, Thursday the 16th was just another day under Grayson's belt. He finished his last dose of Busulfan (16 doses total) this morning and received his first dose of Fluderabine at 2pm this afternoon. He tried to pull out his central line today. Not on purpose but the tubes were not pinned up to his shirt at the time and he grabbed it and yanked which made him cry and me cry because I thought he pulled it out. Fortunately he only tore a stitch and while it did move the line/tube out of him a little, they took an x-ray and it showed the line was still central which meant no surgery to repair. It does mean that we really need to watch and make sure that it doesn't get caught on his foot or that he doesn't grab it again which is not easy with a busy 10 month old. I need to figure out a clever way to hide the tubing while it’s still attached to the machines and still give the nurses access to them. Any ideas?
I got to see my Gavin today. My husband and mother also but my little boy just wanted me to hold him the whole visit. That was the most wonderful part of my day today. Hugging my firstborn who is about to give something of himself to his baby brother to save his life. I am just thrilled and amazed that this is even able to happen. The nurse told me today that whatever Grayson's blood type is now will change to Gavin's after the transplant as well as his immunity identity. Anything that Gavin is allergic to or immune from, Grayson will now be allergic to or immune from. Pretty cool! Although that means neither of them can have PB&J's.
My husband brought Grayson's walker which he can actually sit in and walk around in with his IV pole in tow. Of course my husband a.k.a. MacGyver, created an attachment to the IV pole with rope and carabiners that all the IV pole to hook to the walker or my belt loop so that he can pool around his own IV pole or I can carry Grayson and tow the IV pole behind me so that I have a free hand. The nurses were in awe of this clever system as we strolled the halls during our usual have-to-get-out-of-our-room laps. Did I mention how ingenious my husband is? So thankful for his craftiness.
The only other event today was that he has to take an antibiotic by mouth twice a day as a preventative measure and he keeps throwing it up. They don't make this antibiotic in IV form. Unfortunately he had to miss his evening dose because we tried twice to get it in him and both time it came right back up even with his anti-nausea meds already delivered. That stunk because if he winds up not being able to take this drug, we have to move to the less effective ones which don't work as well to prevent the pneumonia he is at risk of developing after transplant. Please pray he is able to stomach the Bactrim tomorrow morning.
Thank you Jesus for my husband. You have blessed me with a man who knows you and desires not just a continued relationship with you but a deeper understanding of who you are and what you desire for his life. I am so thankful for his creativity, resourcefulness, and problem solving skills. Thank you for our church and the wonderful people that you have put in our lives as role models and friends. I want to thank you specifically for the Meyers family who continues to bless us and our son Mason. I ask that you bless the time that Mason gets to share with Annette, Mike and their sons every Wednesday. Thank you for protecting Grayson's central line today. Thank you for allowing me to have a special time with Gavin today and that he was willing to let me snuggle with him for a while. Thank you for my mother and mother-in-law who are giving up so much of their time and energy to come and be the caretakers of my children and house while I cannot. I am truly blessed by their sacrifices.
Thursday, December 16, 2010
Prayer Requests
Tom and I had to sign a consent form before we began this process that listed all of the known risks/discomforts and long-term effects associated with a bone marrow transplant. I hate putting all of these scary things out here but the fact is they are all realistic risks/effects that Grayson faces. There are so many people praying for my son and I thought this might help you all to know what to pray for. Please do not be discouraged by this list as God is bigger than all of them. However, I do ask that you pray that God would spare my son from each of these items specifically.
The major risk of high dose therapy and BMT is the development of complications following the treatment.
a. Loss of body and scalp hair. This generally returns 2-3 months after treatment, though it may not be the same color and texture as before. In about 5% of patients’ hair thinning or loss will be permanent.
b. Skin rashes and darkening of the skin color. (Grayson already has the skin rash)
c. Nausea and vomiting, that usually lasts several hours after each dose of drug. (Grayson is having a hard time with this).
d. Sore mouth and throat with or without canker sores.
e. Diarrhea which may become bloody.
f. Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells lining the GI tract, particularly in the oral cavity, leaving the mucosal tissue open to ulceration and infection. Mucositis can occur anywhere along the digestive tract from the mouth to the anus. If he develops this condition he will only be able to have IV nutrition which can further compromise liver function.
g. Bleeding into vital tissues
h. Urinary bladder damage with blood in urine.
i. Need for transfusion of blood products which carry a small risk of transfusion reactions and transmissions of infections.
j. The immune system will be suppressed, increasing the risk of infections, which can be life-threatening.
k. Fever and possible infections of the blood stream or tissues.
l. Difficulty breathing and pneumonia.
m. Liver function abnormalities (such as hepatitis from infections or drugs and veno-occlusive disease (VOD) that may be progressive). Busulfan has been known to cause VOD during the month following transplant.
n. Other organ toxicities such as seizures, kidney failure, function abnormalities and very rarely, damage to the heart muscle.
o. Failure of the marrow to grow and produce normal red blood cells, white blood cells and platelets which would be fatal.
p. The development of graft-versus-host disease (GVHD) with skin rashes and mucous membrane damage, diarrhea, and liver damage. This can be progressive and may be life-threatening.
q. Transient or permanent sterilization.
The long term risks are largely unknown, but may include:
a. Changes in hormone gland function
b. New cancers induced by the treatment
c. Cataracts
d. Relapse (Leukemia grows back despite the BMT)
Also an ongoing concern is Grayson’s central line. It is an opening to his skin and his blood stream which is always at risk for infection. Please pray that his central line does not become infected because it is going to be in place for at least 6 months and during this time we need it to stay infection free to ensure Grayson can get all the medications and fluids/nutrition he needs.
Thank you to all of the people praying for my son. Again God is bigger than all of these things and he is faithful to answer prayer.
Wednesday, December 15, 2010
Today, Grayson and I had an eventful day. We woke up to a technician coming in our room while we were still sleeping in the dark telling me the mini fridge we had just gotten that day was "running hot". I don't technically know what that means but we had to move all of our stuff out of the fridge. I asked where I could put it and he said "In the next room because you are moving today". Oh, okay?!? No one had informed me of this so it was a bit of a surprise at 7 in the morning. Our lovely nurse Suzanne came in and apologized for the abrupt wake-up and said our room needed to be comprehensively cleaned and we were going to have to move next door to a newly cleaned room. That was fine with us, but it had to happen that morning so we had to quickly move stuff around while we were still in our PJ's. No big deal and Suzanne and our other nurse from the other day helped me come and move all our stuff so it was quick. Did I mention I really love the nurses here!
After we switched rooms Grayson and I got dressed just in time for him to take his oral antibiotic which made him throw up on me and we had to re-dress. I have no problems with throw-up but it meant we had to try to get the antibiotic in him so we tried again after some Zofran (anti-nausea meds) and he threw-up again. Change clothes. Gave him Adavan (another anti-nausea medicine) and waited until he was a little more relaxed and then...success he swallowed and kept it down! Thank you Jesus!
I have one major thanks right now and that is my nurses have been in the room each time Grayson has thrown-up. They are in and out frequently, but the fact that they are standing by me whenever he happens to get sick is really nice because they help me clean him up and let me clean myself up. That is a real blessing to me!
We also had some visitors today. Sharon Booker came to see us bearing gifts which were great because the toy room on our floor is closed until Christmas Day. Plus Ms. Sharon helped distract Grayson while Suzanne got his vitals which are always a struggle :) My Daddy came to visit us and not only did he bring me two G&M crab cakes (mmmm!) but he also put in a sound masking system to help block out some of the hallway noise. You would be surprised how noisy our floor is all day and all night long. I have it running now and it is very nice. Tom's two aunts came and visited in the evening and brought me soup and some new bed sheets because Grayson had gotten sick all over mine. I was very thankful for clean bed sheets and the company because Tom wasn't able to come see us today :(
Grayson also got his first bath tonight since his central line was put in. I think our poor nurse underestimated how much he loves water and how strong he is. I tried to warn her, but she didn't think a little baby could splash that much so we filled up a basin of warm water, put a waterproof pad on portion of the crib, laid out our towel, washcloth and soap and sat Grayson in the middle to have a nice quiet sponge bath. That lasted maybe 2 seconds and Grayson grabbed the basin and dumped it all over him, mommy, the crib and the floor. Somehow Suzanne was spared but you should've seen her face when he did it. There was water everywhere and she just looked at me like "Did that really just happen?" Oh well, change clothes again. We moved him into the shower stall which is quite small with his line, tubing and IV pole in tow. Suzanne and I were crouched in front of this small stand up shower trying to bath this kid and maneuver around his tubing and prevent him from getting his bandages wet. We must have looked hysterical but the baby was so happy splashing that it made all the effort totally worth (for me at least). Next time Suzanne said we will disconnect him from the tubing, put on an aqua guard first and then head straight for the shower.
Oh Heavenly Father, thank you so much for my beautiful baby boy. For patient nurses and for all of our visitors today. I know that my baby is in your hands and part of a plan that is bigger than me or Grayson or Johns Hopkins or Leukemia and that results in your ultimate glory. Thank you for making my baby part of your plan.
Just think,
your son is here not by chance,
but by God's choosing.
His hand formed him and made him
the person he is.
God compares him to no one else-
he is one of a kind.
Your son will lack nothing
that God's grace can't give him.
God has allowed your son to be here
at this time in history to fulfill
His special purpose for this generation.
Roy Lessin
After we switched rooms Grayson and I got dressed just in time for him to take his oral antibiotic which made him throw up on me and we had to re-dress. I have no problems with throw-up but it meant we had to try to get the antibiotic in him so we tried again after some Zofran (anti-nausea meds) and he threw-up again. Change clothes. Gave him Adavan (another anti-nausea medicine) and waited until he was a little more relaxed and then...success he swallowed and kept it down! Thank you Jesus!
I have one major thanks right now and that is my nurses have been in the room each time Grayson has thrown-up. They are in and out frequently, but the fact that they are standing by me whenever he happens to get sick is really nice because they help me clean him up and let me clean myself up. That is a real blessing to me!
We also had some visitors today. Sharon Booker came to see us bearing gifts which were great because the toy room on our floor is closed until Christmas Day. Plus Ms. Sharon helped distract Grayson while Suzanne got his vitals which are always a struggle :) My Daddy came to visit us and not only did he bring me two G&M crab cakes (mmmm!) but he also put in a sound masking system to help block out some of the hallway noise. You would be surprised how noisy our floor is all day and all night long. I have it running now and it is very nice. Tom's two aunts came and visited in the evening and brought me soup and some new bed sheets because Grayson had gotten sick all over mine. I was very thankful for clean bed sheets and the company because Tom wasn't able to come see us today :(
Grayson also got his first bath tonight since his central line was put in. I think our poor nurse underestimated how much he loves water and how strong he is. I tried to warn her, but she didn't think a little baby could splash that much so we filled up a basin of warm water, put a waterproof pad on portion of the crib, laid out our towel, washcloth and soap and sat Grayson in the middle to have a nice quiet sponge bath. That lasted maybe 2 seconds and Grayson grabbed the basin and dumped it all over him, mommy, the crib and the floor. Somehow Suzanne was spared but you should've seen her face when he did it. There was water everywhere and she just looked at me like "Did that really just happen?" Oh well, change clothes again. We moved him into the shower stall which is quite small with his line, tubing and IV pole in tow. Suzanne and I were crouched in front of this small stand up shower trying to bath this kid and maneuver around his tubing and prevent him from getting his bandages wet. We must have looked hysterical but the baby was so happy splashing that it made all the effort totally worth (for me at least). Next time Suzanne said we will disconnect him from the tubing, put on an aqua guard first and then head straight for the shower.
Oh Heavenly Father, thank you so much for my beautiful baby boy. For patient nurses and for all of our visitors today. I know that my baby is in your hands and part of a plan that is bigger than me or Grayson or Johns Hopkins or Leukemia and that results in your ultimate glory. Thank you for making my baby part of your plan.
Just think,
your son is here not by chance,
but by God's choosing.
His hand formed him and made him
the person he is.
God compares him to no one else-
he is one of a kind.
Your son will lack nothing
that God's grace can't give him.
God has allowed your son to be here
at this time in history to fulfill
His special purpose for this generation.
Roy Lessin
Wednesday, December 15, 2010
Tuesday, December 14, 2010
Okay so I have never blogged before and I don't know if there is a right or wrong way to do it so if I am giving far too much detail for people reading this, I apologize. As a woman I like to know the details and therefore I tend to write about all the details. Sorry for you men reading that just want the hard facts. I am going to try to keep this one brief because it is almost midnight on Tuesday and I just wrote 4 days worth of blogs and need to sleep. So, today Grayson did fine for the most part with his chemo. He had some more gagging episodes but no vomiting during the day. My mom brought Gavin to the hospital and I was just thrilled to see him. Mason was at school but I got to have a good chat with him on the phone and will hopefully get to see him Thursday. He's ten and normally has one word answers for all my questions but today I think he felt bad for me so he gave me two or three word answers to my questions :) The kids at home seem to be doing great without me. My mom is a great grand mom and mom and has spent a lot of time in the past with them so it doesn't seem that different for them to have her there so often.
At Grayson's 5pm dose he started gagging and this time he did vomit all over me. It didn't gross me out, just made me sad. I can't imagine what it feels like to have poison repeatedly put into your body. After he finished the nurse help me clean him up and he nursed right away. She said some kids just need to vomit and get it over with and then they feel better. I hope that's the case with Grayson. I decided not to give him Adavan until his 11pm dose because it makes him sleepy. The nurse also encouraged me that getting sick like this is a good thing because we need to kill off all his marrow and the cancer along with it so it's a good sign that he is getting sicker. Somehow it didn't make me feel better, but thank you Alex for trying! I am thankful to God today that Grayson was able to handle 9 doses of chemo before throwing up and thankful for my mom who brought one of my sons down today for a visit even though she doesn't like to drive in the city. Thank you God for my husband who runs around all day long getting the kids up and fed and Mason off to school, going to work, visiting me on his lunch break, then back to work, then back to visit, then home to feed the kids and put them to bed. He really is SUPERMAN! Thank you for great Christian friends and family who are a constant encouragement to me. Thank you for Lindsay Archer and Erica Catron who made my family dinner Monday and today. Thank you for the many church families and individuals around the US praying for my sweet baby boy.
At Grayson's 5pm dose he started gagging and this time he did vomit all over me. It didn't gross me out, just made me sad. I can't imagine what it feels like to have poison repeatedly put into your body. After he finished the nurse help me clean him up and he nursed right away. She said some kids just need to vomit and get it over with and then they feel better. I hope that's the case with Grayson. I decided not to give him Adavan until his 11pm dose because it makes him sleepy. The nurse also encouraged me that getting sick like this is a good thing because we need to kill off all his marrow and the cancer along with it so it's a good sign that he is getting sicker. Somehow it didn't make me feel better, but thank you Alex for trying! I am thankful to God today that Grayson was able to handle 9 doses of chemo before throwing up and thankful for my mom who brought one of my sons down today for a visit even though she doesn't like to drive in the city. Thank you God for my husband who runs around all day long getting the kids up and fed and Mason off to school, going to work, visiting me on his lunch break, then back to work, then back to visit, then home to feed the kids and put them to bed. He really is SUPERMAN! Thank you for great Christian friends and family who are a constant encouragement to me. Thank you for Lindsay Archer and Erica Catron who made my family dinner Monday and today. Thank you for the many church families and individuals around the US praying for my sweet baby boy.
Tuesday, December 14, 2010
Monday, December 13, 2010
So Grayson is getting a 2 hour dose of a chemotherapy called Busulfan every 6 hours so at every 5:00 and 11:00. The entire day he seemed to handle the chemo well. He didn't seem any different than normal. We had a nurse named Kasey who is my new BFF because she looks like me and Grayson lets her hold him without crying!
Grayson is cruising (walking with help) and hates being penned in our room. It is definitely hard to keep him occupied in a small space for hours during the day. We brought a play mat and some toys but he wants to walk all the time. It takes two people to walk him because one person has to hold his hands and the other has to push his IV pole. Because I am here alone with him, I have to recruit the nurses to help me. It helps that all the nurses think my baby is the cutest baby ever and want to come play with him all the time. I should probably mention that he is also the only baby on the floor but that does not discredit his cuteness. Kasey was great and walked him for laps around the oncology unit which he loved! She also snuck us some toys from the playroom which is normally open for all the kids on the floor but closed for two weeks to prepare for Christmas which is supposed to be a pretty big deal on this floor. There was a little boy about a year older than Grayson named Matthew (Matty) that left the unit the day after we got here but before he left he gave us two things. A little Christmas tree that is adorable and doubles as a night light and a special wrap for his tubing that holds all of his tubes together to make them more manageable. (Think of one of those covers that keep all your electronic wiring wound tightly together). Pray for Matty please. He has AML and none of his 3 siblings were a match for BMT so he did chemo instead. He and his mommy were in this unit for 6 months and they are finally going home. Please pray that he does not relapse and will remain healthy.
Grayson still nurses which is good because his appetite for table food hasn't been great lately. You can tell by his size that the kid is normally a great eater and loves all food. The fact that he hasn't wanted table food has been concerning for me because I know it’s not typical for him. He has still been nursing regularly though. At his 5pm dose on Monday he started to cough and gag a bit but no vomiting. I wasn't sure if it was from the chemo or if he just simply coughed and gagged (babies do that sometimes). After he did it a couple times I was suspicious but remained hopeful that he would not suffer like the doctors said he might. At the 11pm dose he really started gagging and refusing to nurse. My heart sank because I wanted to comfort him and I couldn't at that moment. However his nurse Sam came to his rescue and gave him a drug called Adavan. Thank you Lord for this wonderful drug that made my baby feel better and let him sleep through the night. I also want to thank you for the wonderful nurse named Sam who despite being in our room several times through the night, never made a sound and took Grayson's vitals 2 times without waking him up! I really loved her.
Grayson is cruising (walking with help) and hates being penned in our room. It is definitely hard to keep him occupied in a small space for hours during the day. We brought a play mat and some toys but he wants to walk all the time. It takes two people to walk him because one person has to hold his hands and the other has to push his IV pole. Because I am here alone with him, I have to recruit the nurses to help me. It helps that all the nurses think my baby is the cutest baby ever and want to come play with him all the time. I should probably mention that he is also the only baby on the floor but that does not discredit his cuteness. Kasey was great and walked him for laps around the oncology unit which he loved! She also snuck us some toys from the playroom which is normally open for all the kids on the floor but closed for two weeks to prepare for Christmas which is supposed to be a pretty big deal on this floor. There was a little boy about a year older than Grayson named Matthew (Matty) that left the unit the day after we got here but before he left he gave us two things. A little Christmas tree that is adorable and doubles as a night light and a special wrap for his tubing that holds all of his tubes together to make them more manageable. (Think of one of those covers that keep all your electronic wiring wound tightly together). Pray for Matty please. He has AML and none of his 3 siblings were a match for BMT so he did chemo instead. He and his mommy were in this unit for 6 months and they are finally going home. Please pray that he does not relapse and will remain healthy.
Grayson still nurses which is good because his appetite for table food hasn't been great lately. You can tell by his size that the kid is normally a great eater and loves all food. The fact that he hasn't wanted table food has been concerning for me because I know it’s not typical for him. He has still been nursing regularly though. At his 5pm dose on Monday he started to cough and gag a bit but no vomiting. I wasn't sure if it was from the chemo or if he just simply coughed and gagged (babies do that sometimes). After he did it a couple times I was suspicious but remained hopeful that he would not suffer like the doctors said he might. At the 11pm dose he really started gagging and refusing to nurse. My heart sank because I wanted to comfort him and I couldn't at that moment. However his nurse Sam came to his rescue and gave him a drug called Adavan. Thank you Lord for this wonderful drug that made my baby feel better and let him sleep through the night. I also want to thank you for the wonderful nurse named Sam who despite being in our room several times through the night, never made a sound and took Grayson's vitals 2 times without waking him up! I really loved her.
Sunday, December 12, 2010
We got up early and packed the last items we thought we might need to have in the hospital. Someone seriously needs to write a "What to pack when staying long-term with a baby in a hospital" list. I always use those internet beach packing lists when we go on vacation but World Wide Web you let me down this time. The charge nurse had wanted us there at noon but said we could make it as late as 2pm. We left at the last possible second in order to make it by 2pm. The ride down was quiet and somewhat surreal because it was hard to think that we were voluntarily driving our little ten month old to get chemotherapy and a bone marrow transplant. We had heard those words before but didn't really know anyone close who had experienced either of these. I told Tom I know it sounds crazy but I wish I knew what chemotherapy and a BMT felt like. At least it would give me some perspective as to how he was going to be feeling. He is not old enough to say that "that hurts" or "I think I'm gonna puke".
When we got there we were greeted by our nurse Alex who showed us our room and I have to say the other room we stayed in when we were here last was nicer. I know it’s not a hotel but it was really dirty. So dirty in fact that before I could put anything away I had to call in a cleaning service (A.K.A my mom) and she came to our rescue within 20 minutes. I could've asked the cleaning staff to come in again but their mops and stuff look filthy and I am a complete germ freak especially now. I found out later that the room was due for a comprehensive cleaning, which is done once a month but they had been so busy that it hadn't gotten done before we arrived so eventually we will have to switch rooms. My mom is better than any cleaning person they could possibly have on staff so I felt comfortable staying in the room we had for now. We unpacked and in no time Grayson's central line was hooked up to 5 or 6 lines that had a bunch of stop cocks (actual medical terminology) and all hooked to different machine that held different meds for him. The machines are mounted on this pole that's on wheels because he has to stay attached to the machines 24/7. We are getting used to it but it is still quite tricky. Alex gave him his first dose of chemo at 5pm and we were all sitting around (me and Tom plus my parents) waiting for something to happen. He just played with some toys we brought and giggled and acted just like he always does. I was very thankful for that because the doctor told us that in worse case scenarios as soon as the chemo enters the body some kids start feeling nauseous and throw-up.
My in-laws and our two other boys joined our hospital party after we got settled so they could check out where Mom and Grayson were going to be living for the next several weeks. They all had to leave at 8 and I was sad to see them go but the nurses were in so often there wasn't much time to think about it.
Grayson did really well all night and his new accessories didn't even seem to bother him. We did have a rough night in that his blood needed to be drawn every 15 minutes during the first 2 hour dose of chemo and then every 30 minutes after that for his second dose. It was a crazy revolving door of nurses. So that was exhausting and I think I got maybe an hour or two of sleep but all the nurses were nice and the baby slept through a lot of it so that is something we should be praising.
Thank you God for no initial reaction to the chemo and for really great nurses. Thank you for my mother who was willing to come and clean our room for us and for my Dad who brought us yummy corned beef sandwiches. Thank you for my in-laws who were so willing to help us all day with our kids so we could get settled. Thank you for allowing Grayson to sleep fairly well considering everything that was happening to him.
When we got there we were greeted by our nurse Alex who showed us our room and I have to say the other room we stayed in when we were here last was nicer. I know it’s not a hotel but it was really dirty. So dirty in fact that before I could put anything away I had to call in a cleaning service (A.K.A my mom) and she came to our rescue within 20 minutes. I could've asked the cleaning staff to come in again but their mops and stuff look filthy and I am a complete germ freak especially now. I found out later that the room was due for a comprehensive cleaning, which is done once a month but they had been so busy that it hadn't gotten done before we arrived so eventually we will have to switch rooms. My mom is better than any cleaning person they could possibly have on staff so I felt comfortable staying in the room we had for now. We unpacked and in no time Grayson's central line was hooked up to 5 or 6 lines that had a bunch of stop cocks (actual medical terminology) and all hooked to different machine that held different meds for him. The machines are mounted on this pole that's on wheels because he has to stay attached to the machines 24/7. We are getting used to it but it is still quite tricky. Alex gave him his first dose of chemo at 5pm and we were all sitting around (me and Tom plus my parents) waiting for something to happen. He just played with some toys we brought and giggled and acted just like he always does. I was very thankful for that because the doctor told us that in worse case scenarios as soon as the chemo enters the body some kids start feeling nauseous and throw-up.
My in-laws and our two other boys joined our hospital party after we got settled so they could check out where Mom and Grayson were going to be living for the next several weeks. They all had to leave at 8 and I was sad to see them go but the nurses were in so often there wasn't much time to think about it.
Grayson did really well all night and his new accessories didn't even seem to bother him. We did have a rough night in that his blood needed to be drawn every 15 minutes during the first 2 hour dose of chemo and then every 30 minutes after that for his second dose. It was a crazy revolving door of nurses. So that was exhausting and I think I got maybe an hour or two of sleep but all the nurses were nice and the baby slept through a lot of it so that is something we should be praising.
Thank you God for no initial reaction to the chemo and for really great nurses. Thank you for my mother who was willing to come and clean our room for us and for my Dad who brought us yummy corned beef sandwiches. Thank you for my in-laws who were so willing to help us all day with our kids so we could get settled. Thank you for allowing Grayson to sleep fairly well considering everything that was happening to him.
Saturday, December 11, 2010
Okay so we got to the Hopkins ER at around 5am on Saturday morning and we were there for a while and several ER doctors/fellows/residents came in and examined Grayson and all of them agreed that since we were already there that we should probably just be safe and admit Grayson for observation overnight and start his chemo as planned on Sunday. I was so disappointed because I had planned on spending Saturday as a family day and I hadn't spent any time with my other boys (Mason and Gavin) before having to leave in a hurry to the ER. I was praying that God would just allow me to accept this for what it was and to be happy that they were trying to do what was best for Grayson. Then my actual transplant doctor and his team made it down to the ER to see us and he didn't make me repeat for the 10th time what had transpired after surgery he just said told me that he thought Grayson was presenting as a classic breath-holding case and he didn't think it was necessary to admit a child for holding his breath. HALLELUIAH we got to go home! I was so thrilled and Tom couldn't believe it when I called him and told him he could come pick us up! Only one parent can ride in the ambulance so he went home to grab all our stuff prepared for Sunday because we thought they were going to admit us. I just can't tell you enough how AWESOME our God is. Everyone said he was going to have to stay and yet God worked it so that I could spend one last day and night with my boys and my husband.
We made the most of it too. We baked cookies as a family which was so much fun, played Wii Resort, ate Papa Joe's for dinner (mmmm, my favorite) and I got to tuck my boys in their beds and sleep in my own bed. I have never been so appreciative of a night in my own home with my family. Oh and the baby did just fine all day and all night with no more breath holding spells. That little stinker scared us good.
I just want to praise God for the allowing these episodes to be breath-holding and nothing more serious. Thank you Jesus for giving Dr. Lobe the wisdom to figure that out and the graciousness to let us go home for one last night. Thank you for that one last night at home in my own bed and for my beautiful family. Thank you for an opportunity to share my faith with the ambulance driver.
We made the most of it too. We baked cookies as a family which was so much fun, played Wii Resort, ate Papa Joe's for dinner (mmmm, my favorite) and I got to tuck my boys in their beds and sleep in my own bed. I have never been so appreciative of a night in my own home with my family. Oh and the baby did just fine all day and all night with no more breath holding spells. That little stinker scared us good.
I just want to praise God for the allowing these episodes to be breath-holding and nothing more serious. Thank you Jesus for giving Dr. Lobe the wisdom to figure that out and the graciousness to let us go home for one last night. Thank you for that one last night at home in my own bed and for my beautiful family. Thank you for an opportunity to share my faith with the ambulance driver.
Friday, December 10, 2010
Sorry for taking so long to get an update out but we have had an eventful weekend and week so far. As Rebecca said we had to take Grayson to our local ER on Friday night because we think his central line got pushed on by accident and he started screaming. He let out a big cry and held his breath until his lips and face were purple and then he passed out in Tom's arms. He never took a big breath when he regained consciousness and instead kept his eyes closed and just took shallow breaths. Tom and I had seen Grayson hold his breath before when he was crying but never to this extent. Needless to say we were totally freaked out. I called the doctors at Hopkins and they told us we needed to get him to the ER there as soon as possible. Tom asked if we could please take him to the local ER for observation instead of driving all the way back to Hopkins. The doctor agreed to this and called Carroll's ER to let them know we were coming. When we got there, I pulled Grayson out of his car seat and when the cold air hit his face he woke up and seemed more alert. I was happy to see that and he played with the nurses while they took his vitals. Anyway, we had to get x-rays to make sure he hadn't pulled his central line out of place or that there wasn't air in his chest cavity (a possible side effect of the surgery). During x-ray, Grayson had a hard time standing still and the positions they needed him in were awkward so the tech grabbed him to hold him still which set of another crying/breath holding spell. This time it was worse and he passed out and did not take any more breaths after he passed out but instead just sort of twitched. The tech tried to call a code blue but there was a problem with his phone and he couldn't reach the charge nurse. SERIOUSLY CARROLL COUNTY ER?!? Anyway another tech grabbed him and ran him out in the hallway and he started to cry which meant he was breathing again. I was thankful that the hospital saw him do it so that they understood what had happened at home but that was a two-edged sword. Carroll did not feel comfortable keeping a baby with his kind of "problems" so they transferred us to Hopkins by ambulance. I guess we should have just gone there to begin with but the ambulance ride was God's plan all along. For those believers reading this I am not bold when it comes to sharing my faith but as Annette Meyers told me that night, I was right where I needed to be that night. On the ride down I was talking with the ambulance driver who told me this was his very first shift on the ambulance team (hmm, not comforting but that's not the point of my story). I was telling him how I had wanted to spend one last night in my home before we were supposed to be admitted but now it didn't look like that was going to happen. I was talking about how the hospital would be my temporary home for the next several months but no matter what we did to make it nice it would never be "home". Then the Holy Spirit nudged me to take that idea further and share with him that my "home" really isn't here on this earth anyway because this was all just a temporary home and that because I believed in Christ I would one day be "home" in heaven with Him. I don't know whether that was necessarily a salvation message but it was a bold step for me and I believe that Christ wanted me to share that with him. So please pray for Brian the ambulance driver that the seeds that were planted Friday night might grow into a need to know more about Christ.
Saturday, December 11, 2010
Prayers for Rest
This is Rebecca Merson blogging on behalf of Pam (with her permission) today so she can rest and focus on her family as they prepare to head to Hopkins tomorrow.
Last night was eventful for Grayson. After a successful surgery, Grayson was doing well at home recovering, then late last night he would cry, turn blue from not taking a breath and then pass out. They took him to Carroll's ER, then they were transferred via ambulance to Hopkins where thankfully all was okay with Grayson, praise God! The Browns were able to return home this morning to rest and prepare for tomorrow.
Please pray for the family, especially Pam, as she is exhausted from little sleep over the past two days and will be heading to Hopkins in the morning to stay with Grayson as chemo treatments begin. Pray tomorrow as doctors begin the process toward the bone marrow transplant scheduled for December 22nd.
I am sure Pam will be online at some point with more updates, but for now she is resting and unplugged so that they can enjoy this day together as a family. Thanks for the continued prayers!
Last night was eventful for Grayson. After a successful surgery, Grayson was doing well at home recovering, then late last night he would cry, turn blue from not taking a breath and then pass out. They took him to Carroll's ER, then they were transferred via ambulance to Hopkins where thankfully all was okay with Grayson, praise God! The Browns were able to return home this morning to rest and prepare for tomorrow.
Please pray for the family, especially Pam, as she is exhausted from little sleep over the past two days and will be heading to Hopkins in the morning to stay with Grayson as chemo treatments begin. Pray tomorrow as doctors begin the process toward the bone marrow transplant scheduled for December 22nd.
I am sure Pam will be online at some point with more updates, but for now she is resting and unplugged so that they can enjoy this day together as a family. Thanks for the continued prayers!
Friday, December 10, 2010
Baby's Surgery
Tom and I got up at 4:30am and left our house at 5:00am to get to the hospital by 6:00am. Of course it was a hurry up and wait situation because they were short staffed in pre-op and only had one nurse checking in all of the "first cases". That was less than fun with a hungry 10 month old. We made it through the hour and a half and then the doctors started arriving for us to sign consents. The anesthesiologist was particularly concerned because of Grayson's cough/cold. She said if this was an emergency to get the chemotherapy started there is no way I would be putting your baby to sleep (so comforting). She let us know that there were risks of all sorts of asthma style spasms and closing of airways that could happen while he was going to sleep and while he was waking up. I took him back at about 7:30am and he got the gas mask which he screamed about but that just helped him inhale more gas and fall asleep faster :)
We were told that the surgery would be about 45 minutes to an hour. They called the waiting room at 8:15 and let us know they had begun the surgery and he went to sleep without complications. Praise God, no problems going to sleep. We were in the waiting room for over 90 minutes before we heard anything else. The anesthesiologist had said they would not bring him to recovery until he was breathing without problems on his own. So, needless to say I was praying hard and posted to FB for everyone else to pray hard as well because we were both feeling anxious.
Finally I saw the doctor emerge (no baby) and he walked over and asked us to step outside the waiting room for a moment. Just an FYI, normally the doctors just talk to you in the waiting room and shake your hand and say everything went great and he's being wheeled to recovery. When he asked us to step outside our initial reaction was that there were complications and that he was probably on ventilators. Thank God he was only calling us out because there had been some minor complications but he was okay and breathing.
What was the minor complication? The doctor was cutting Grayson's neck to thread the cathiter into his facial vein (that's actually the normal part) and one of his tools clamped Grayson's earlobe and caused a bruise/cut on his ear (that was the complication). He is okay, just looks like someone tried to pierce his ear. They also had a hard time finding an IV for a vein so he has several stick marks and bruises from the failed attemps. The doctor had warned us that he was borderline as far as size to do a sub-clavian (below his collar bone) or juggular (neck) entry and he tried to go in under the collar bone first but couldn't get it to work so he had to cut his neck. Unfortunately because Grayson's platlets are so low the area where he poked under his collar bone is very bruised. These things are all very minor in comparison to the complications that could have occured with the anesthesia so we are just rejoicing at this moment.
Grayson has a Double-Lumen or Hickman line which means he has two tubes coming out of his chest and they go into his body up his chest and enter his blood line in his neck area. This is going to be a permanant fixture so please pray for no infections or complications with this line.
Today was just another example of Christ's hand at work to protect out little angel and the power of prayer. Thank you so much to all those praying for our baby. We so strongly believe it is through prayer that our baby will be healed. Please help us give thanks for all of the victories we had in the operating room today.
We were told that the surgery would be about 45 minutes to an hour. They called the waiting room at 8:15 and let us know they had begun the surgery and he went to sleep without complications. Praise God, no problems going to sleep. We were in the waiting room for over 90 minutes before we heard anything else. The anesthesiologist had said they would not bring him to recovery until he was breathing without problems on his own. So, needless to say I was praying hard and posted to FB for everyone else to pray hard as well because we were both feeling anxious.
Finally I saw the doctor emerge (no baby) and he walked over and asked us to step outside the waiting room for a moment. Just an FYI, normally the doctors just talk to you in the waiting room and shake your hand and say everything went great and he's being wheeled to recovery. When he asked us to step outside our initial reaction was that there were complications and that he was probably on ventilators. Thank God he was only calling us out because there had been some minor complications but he was okay and breathing.
What was the minor complication? The doctor was cutting Grayson's neck to thread the cathiter into his facial vein (that's actually the normal part) and one of his tools clamped Grayson's earlobe and caused a bruise/cut on his ear (that was the complication). He is okay, just looks like someone tried to pierce his ear. They also had a hard time finding an IV for a vein so he has several stick marks and bruises from the failed attemps. The doctor had warned us that he was borderline as far as size to do a sub-clavian (below his collar bone) or juggular (neck) entry and he tried to go in under the collar bone first but couldn't get it to work so he had to cut his neck. Unfortunately because Grayson's platlets are so low the area where he poked under his collar bone is very bruised. These things are all very minor in comparison to the complications that could have occured with the anesthesia so we are just rejoicing at this moment.
Grayson has a Double-Lumen or Hickman line which means he has two tubes coming out of his chest and they go into his body up his chest and enter his blood line in his neck area. This is going to be a permanant fixture so please pray for no infections or complications with this line.
Today was just another example of Christ's hand at work to protect out little angel and the power of prayer. Thank you so much to all those praying for our baby. We so strongly believe it is through prayer that our baby will be healed. Please help us give thanks for all of the victories we had in the operating room today.
Thursday, December 9, 2010
Eyes Look Clearer Today
Thank you for praying friends! Grayson's eyes look much better today. Please continue to pray for Grayson's cold and congestion to go away before surgery tomorrow morning. He will be put under anesthesia and have a central line placed. Please pray for wisdom and precision for Dr. Fray Stewart who will be doing the cutting and line placement at 7:30am. Pray for no adverse effects of the anesthesia and for a quick recovery for Grayson and safe travel to and from Hopkins. Thank you all for continuing to lift our baby and family in prayer.
From Pam's Facebook Page
Okay prayer warriors, Grayson not only has a head cold but conjunctivitis in both eyes and a nasty croupy cough. Drs. decided to continue with central line placement this Friday regardless of his condition because they have to start chemo ASAP. This means additional risk in Friday's procedure and during Chemo. Pray for... miraculous healing before Friday morning at 7:00 am.
Also just to let everyone know, Grayson is being admitted on the 12th (Sunday) and will start Chemo that day. He will have 8 or 9 days of chemo and then the actual transplant will occur on the 22nd. The next month will be crucial because Grayson will have no immune system to fight of infections. Please pray for protection from any infections.
The Start of Our Journey
Grayson Cole was born January 19, 2010. He weighed 8lbs 13oz and was a happy, healthy baby boy. At every well baby check-up he hit or exceeded all of his developmental milestones and has always been in the 95% or above for height and weight. In late October 2010, I started noticing tiny red pin-prick looking marks on various parts of his body. He had some random bruising on his thigh as well but was otherwise totally healthy and normal. I took him to the pediatrician to get it looked at just to make sure it was nothing to worry about and he didn't seem too concerned but told me he wanted to do a blood test just to be sure. One test led to another and after 3-4 weeks of blood draws and exams our baby was diagnosed with Juvenile Myelomonocytic Leukemia (JMML). This is a vary rare disease for which the only successful treatment found has been bone marrow transplant.
We have been very fortunate in that we caught Grayson's sickness early and that he has not shown any real symptoms of his illness up to this point. We are in very capable hands (our Lords') and the doctors at Johns Hopkins who are rushing things along to make sure Grayson is as well as possible before undergoing his transplant. We are extremely blessed to have a 100% bone marrow donor match in our only other son, Gavin. God is so good. Please continue to pray for our baby boy and for our family as we weather this storm.
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