Labs today:
White blood cells: .6 (normal 4.5 - 13.5)
Red Blood cells: 8.7 (normal 13.5 - 17.5)
Platelets: 52 (normal 150 - 425)
ANC: 18 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Saturday, February 25, 2012
Day 75
Saturday. "Mom, are you really taking another picture." ... umm, yes. :)
Labs today:
White blood cells: .6 (normal 4.5 - 13.5)
Red Blood cells: 8.7 (normal 13.5 - 17.5)
Platelets: 52 (normal 150 - 425)
ANC: 18 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Labs today:
White blood cells: .6 (normal 4.5 - 13.5)
Red Blood cells: 8.7 (normal 13.5 - 17.5)
Platelets: 52 (normal 150 - 425)
ANC: 18 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Friday, February 24, 2012
Day 74
Friday. Aunt Angie sent Riley a care package. It included so many fun items. First of all, some pretty awesome hats, punching balls to "knock it out!" and some old photos of Riley as a one year old.
Also this cool shirt that Gavin insisted getting Riley "For Sundays". So sweet!! What a pick me up!
Grandma and Grandpa, Vince and the kids came by to see Riley after going to a U of A baseball game. They brought a pizza and it was fun to hang out for awhile. Nice day.
Labs today:
White blood cells: .6 (normal 4.5 - 13.5)
Red Blood cells: 9.3 (normal 13.5 - 17.5)
Platelets: 21 (normal 150 - 425) (one unit transfused)
ANC: 54 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Also this cool shirt that Gavin insisted getting Riley "For Sundays". So sweet!! What a pick me up!
Labs today:
White blood cells: .6 (normal 4.5 - 13.5)
Red Blood cells: 9.3 (normal 13.5 - 17.5)
Platelets: 21 (normal 150 - 425) (one unit transfused)
ANC: 54 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Thursday, February 23, 2012
Day 73
Thursday. Riley had a fun visit from our neighbor Shelly today. She always knows just what to say to Riley. She is a nurse for adult chemo patients, so she really does know what to talk about, she answers questions, she is very funny. It mentally helps Riley every time she comes! So supportive!! She also brought some goodies today. A cartoon zombie picture for his room and this amazing jersey!! Shelly's husband Todd ordered this for Riley! Awesome! Riley said, "Ooo, my name looks good on there!!" haha! Thanks Todd!!! What a treat!
Labs today:White blood cells: .7 (normal 4.5 - 13.5)
Labs today:
Red Blood cells: 9.6 (normal 13.5 - 17.5)
Platelets: 43 (normal 150 - 425)
ANC: 175 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Wednesday, February 22, 2012
Day 72
Wednesday. Today was our meeting with the transplant team. Dr. Katsanis, Tina the transplant nurse and Sara the social worker. The Doctor explained to Vince, Riley and I the process and what to expect. It was a positive meeting, but so much information!!
There are two ways they could harvest the stem cells from Preston. The doctor explained that they have decided to collect the stem cells peripherally (from the blood stream), instead of directly from the bone marrow in the hip. Prior to the collection, Preston will receive filgrastim (neupogen) shots. He will come in to the hospital every day for 5 days before the transplant to get these shots. Filgrastim causes blood stem cells to produce and move out of the bone marrow into the bloodstream where it is collected with an apheresis machine. Usually a needle is inserted into a vein in each arm of the donor. Tubing connects the needle to the apheresis machine which removes blood from one arm, separates out the stem cells and returns the remaining blood product to the donor through the needle in the other arm. Because of Preston's age and his smaller veins and the size of the needle, they want to surgically put in a central line under his collar bone to collect the stem cells. It is surgery to get the central line placed and then another surgery to take it out a day or two later. The doctor feels this will be the best option for Preston. The actual harvesting of the cells on transplant day takes about 6 hours.
The doctor explained that they decided to collect peripherally because of the better chance of getting graft -verses- host disease. ?? I know, that doesn't really make sense. I'll explain. Although graft -verses- host disease is very serious and they try to prevent it, they hope Riley will get a mild case of it . If a patient gets graft -verses- host they also have "graft -verses- leukemia effect". This means that along with Preston's T-cells fighting against Riley's organs and tissue, it would also find and kill any lingering leukemia cell left after transplant. They have chosen this route because Riley did not get into remission after the first round of chemotherapy. Not getting in remission after round #1 puts him in a high risk category. Also the chances of relapse go down dramatically with the graft -verses- leukemia effect. ...Sounds like a crazy balancing act!
The nurses in our unit have been giving us info here and there. Stuff like...
"Oh, Riley won't even remember the hardest few weeks. He'll be using his morphine button and just getting through".
"Riley won't eat for a few weeks. He'll be on IV nutrition."
"After the transplant we will weigh Riley twice a day to better monitor his fluids."
"Riley is not going to like us very much after the transplant. We are going to force him to get out of bed to walk and shower when he feels like that is the last thing he wants to do!
I have been reading a book on Bone Marrow and Stem Cell Transplants. A little overwhelming. There are entire chapters on "Liver complications", "Graft- verses- Host Disease" and "Infection- (bacterial, viral, fungal)". Although there are many side effects that Riley will experience and potentially could cause complications. Most of those side effects will get better as time goes on and his new cells engraft and begin producing normal blood cells. There are however, some long term side effects from a transplant that could occur, but the risk of those complications is worth taking compared to the alternative. This will not be easy. We are and have been preparing ourselves. This is a life changer.
The book talks about "deciding to have a transplant". How it is a hard and emotional decision. I think... We didn't decide this... This is just the next step on our path. It is scary, but when it comes down to it... we don't have a choice. This is what we are doing. Although we are faced with a tough time ahead, we are going into it in the best of circumstances.
#1 We have a matched sibling donor!! Preston is very tough.
#2 Riley is in remission!! Which gives the transplant the best chance to work.
#3 Riley is so strong!! He is very tough both physically and mentally.
#4 We are in great hands!! The doctors and nurses who care for Riley are incredible! They are not only good at what they do, but they are so compassionate and kind!
We have a tenative schedule of the upcoming events leading up to the transplant.
*Preston will give a blood sample. (10 tubes!)
*Riley will also give 10 tubes for testing.
*Preston will get a complete physical.
*Riley will also be evaluated and tested and scanned for everything. (heart, lung, etc.)
*We will have a family conference with doctors, Riley and Preston.
*Riley will get a central line put in, (surgery). (His port only gives one access point. He will require several for the amount of medications that he will be getting. This central line will stay in for around 6 months).
*Riley will start his preparative regimen. (8 days of high dose chemotherapy -to completely destroy his immune system)
*Preston will get 5 days of neupogen shots.
*Preston will get a central line put in, (surgery).
*TRANSPLANT DAY - Preston's cells will be harvested. Riley will receive the new stem cells transfused.
*Preston will have surgery to take out the central line.
We have a tenative date to begin, but it all depends on Riley's numbers. The blood tests and check ups begin early March and we will go from there. Hopefully Riley's numbers will be good enough to have his biopsy for this round on March 7th. Time will tell.
On another and much more fun note...
Trent came to visit Riley today. It was nice to just hang out and talk about regular stuff. Good day!
There are two ways they could harvest the stem cells from Preston. The doctor explained that they have decided to collect the stem cells peripherally (from the blood stream), instead of directly from the bone marrow in the hip. Prior to the collection, Preston will receive filgrastim (neupogen) shots. He will come in to the hospital every day for 5 days before the transplant to get these shots. Filgrastim causes blood stem cells to produce and move out of the bone marrow into the bloodstream where it is collected with an apheresis machine. Usually a needle is inserted into a vein in each arm of the donor. Tubing connects the needle to the apheresis machine which removes blood from one arm, separates out the stem cells and returns the remaining blood product to the donor through the needle in the other arm. Because of Preston's age and his smaller veins and the size of the needle, they want to surgically put in a central line under his collar bone to collect the stem cells. It is surgery to get the central line placed and then another surgery to take it out a day or two later. The doctor feels this will be the best option for Preston. The actual harvesting of the cells on transplant day takes about 6 hours.
The doctor explained that they decided to collect peripherally because of the better chance of getting graft -verses- host disease. ?? I know, that doesn't really make sense. I'll explain. Although graft -verses- host disease is very serious and they try to prevent it, they hope Riley will get a mild case of it . If a patient gets graft -verses- host they also have "graft -verses- leukemia effect". This means that along with Preston's T-cells fighting against Riley's organs and tissue, it would also find and kill any lingering leukemia cell left after transplant. They have chosen this route because Riley did not get into remission after the first round of chemotherapy. Not getting in remission after round #1 puts him in a high risk category. Also the chances of relapse go down dramatically with the graft -verses- leukemia effect. ...Sounds like a crazy balancing act!
The nurses in our unit have been giving us info here and there. Stuff like...
"Oh, Riley won't even remember the hardest few weeks. He'll be using his morphine button and just getting through".
"Riley won't eat for a few weeks. He'll be on IV nutrition."
"After the transplant we will weigh Riley twice a day to better monitor his fluids."
"Riley is not going to like us very much after the transplant. We are going to force him to get out of bed to walk and shower when he feels like that is the last thing he wants to do!
I have been reading a book on Bone Marrow and Stem Cell Transplants. A little overwhelming. There are entire chapters on "Liver complications", "Graft- verses- Host Disease" and "Infection- (bacterial, viral, fungal)". Although there are many side effects that Riley will experience and potentially could cause complications. Most of those side effects will get better as time goes on and his new cells engraft and begin producing normal blood cells. There are however, some long term side effects from a transplant that could occur, but the risk of those complications is worth taking compared to the alternative. This will not be easy. We are and have been preparing ourselves. This is a life changer.
The book talks about "deciding to have a transplant". How it is a hard and emotional decision. I think... We didn't decide this... This is just the next step on our path. It is scary, but when it comes down to it... we don't have a choice. This is what we are doing. Although we are faced with a tough time ahead, we are going into it in the best of circumstances.
#1 We have a matched sibling donor!! Preston is very tough.
#2 Riley is in remission!! Which gives the transplant the best chance to work.
#3 Riley is so strong!! He is very tough both physically and mentally.
#4 We are in great hands!! The doctors and nurses who care for Riley are incredible! They are not only good at what they do, but they are so compassionate and kind!
We have a tenative schedule of the upcoming events leading up to the transplant.
*Preston will give a blood sample. (10 tubes!)
*Riley will also give 10 tubes for testing.
*Preston will get a complete physical.
*Riley will also be evaluated and tested and scanned for everything. (heart, lung, etc.)
*We will have a family conference with doctors, Riley and Preston.
*Riley will get a central line put in, (surgery). (His port only gives one access point. He will require several for the amount of medications that he will be getting. This central line will stay in for around 6 months).
*Riley will start his preparative regimen. (8 days of high dose chemotherapy -to completely destroy his immune system)
*Preston will get 5 days of neupogen shots.
*Preston will get a central line put in, (surgery).
*TRANSPLANT DAY - Preston's cells will be harvested. Riley will receive the new stem cells transfused.
*Preston will have surgery to take out the central line.
We have a tenative date to begin, but it all depends on Riley's numbers. The blood tests and check ups begin early March and we will go from there. Hopefully Riley's numbers will be good enough to have his biopsy for this round on March 7th. Time will tell.
On another and much more fun note...
Trent came to visit Riley today. It was nice to just hang out and talk about regular stuff. Good day!
Labs today:
White blood cells: 0.8 (normal 4.5 - 13.5)Red Blood cells: 10.2 (normal 13.5 - 17.5)
Platelets: 74 (normal 150 - 425)
ANC: 448 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Tuesday, February 21, 2012
Day 71
Tuesday. Riley loves to watch "The Office". Often, if he is not feeling well, he puts on a few episodes. That will always raise his mood! We enjoy watching it together too. Riley even has an "Office" trivia app. It is fun! Laughter really is the best medicine! :)
Labs today:
White blood cells: 0.9 (normal 4.5 - 13.5)
Red Blood cells: 7.8 (normal 13.5 - 17.5) (2 units transfused)
Platelets: 105 (normal 150 - 425)
ANC: 522 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Labs today:
White blood cells: 0.9 (normal 4.5 - 13.5)
Red Blood cells: 7.8 (normal 13.5 - 17.5) (2 units transfused)
Platelets: 105 (normal 150 - 425)
ANC: 522 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Monday, February 20, 2012
Day 70
Monday. I spent the night last night here with Riley, but left early this morning to get home before Vince left for work and to get the kids off to school. Juggling. I had a nice morning with Bryant and then got him off on the preschool bus at noon. I then came back to the hospital. Good day with Riley. Still very tired, but handling everything very well and getting all his "jobs" done! (walking, showering eating). Grandma and Grandpa came back to help us this afternoon. We are so thankful for all of the support we are getting!
White blood cells: 1.2 (normal 4.5 - 13.5)
Red Blood cells: 8.3 (normal 13.5 - 17.5)
Platelets: 135 (normal 150 - 425)
ANC: 924 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
White blood cells: 1.2 (normal 4.5 - 13.5)
Red Blood cells: 8.3 (normal 13.5 - 17.5)
Platelets: 135 (normal 150 - 425)
ANC: 924 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
Sunday, February 19, 2012
Day 69
Sunday. Vince spent the night last night with Riley and enjoyed church with him today. Riley is still super tired. The Thurbers came to see Riley later this afternoon and he slept through their whole visit. So worn out!!
White blood cells: 2 (normal 4.5 - 13.5)
Red Blood cells: 8.6 (normal 13.5 - 17.5)
Platelets: 164 (normal 150 - 425)
ANC: 1,620 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
White blood cells: 2 (normal 4.5 - 13.5)
Red Blood cells: 8.6 (normal 13.5 - 17.5)
Platelets: 164 (normal 150 - 425)
ANC: 1,620 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
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