Jordan had Tylee again today. It’s been awhile since she has had Tylee as her day nurse. She was very excited. By the time I got to the hospital this afternoon, Tylee said Jordan had a bad day. She wants to go home so bad and is stressed out that she’s still her. Her acid reflux is really acting up, we suspect because of her stress level. Tylee said there were a lot of tears today. It was a tough day for Jordan.
The night was tough too. She was awake a lot and started throwing up again because her cough is bad. She isn’t nauseous, it’s all because of the cough.
She is getting a few sores in her mouth again.
Tuesday, February 28, 2006
Meet Theresa
Jordan’s day was a bit better today than yesterday. She had Teresa as a nurse today, for the first time. She really likes Teresa. Teresa has two teenage daughters, so I think she can relate fairly well to Jordan.
Monday, February 27, 2006
Fever breaks
Jordan was supposed to start her telecourses today, but the Homebound school is closed this week because the students are taking their FCAT tests. This was disappointing to Jordan because she was looking forward to the diversion of school. She was hoping it would take her mind off of the hospital stay.
She stopped running a fever yesterday afternoon. We’ll keep our fingers crossed that it stays that way.
She stopped running a fever yesterday afternoon. We’ll keep our fingers crossed that it stays that way.
Monday, February 20, 2006
Courtney goes home - Jordan does not
Week of Feb 20, 2006
This week was pretty much the same as last week. Jordan continued to run a fever and they added a second antibiotic to combat the fever. Her counts are still low to non-existent. She cannot leave the hospital unless she is fever free and has a count of at least 500.
Roger brought Madison and Noah to see Jordan on Saturday. They stayed for a couple of hours and painted a poster board with Jordan.
We also shaved Jordan’s hair off this weekend. It was matted and falling out so she decided she wanted to shave it off. Having it fall out by itself caused her scalp to be very sensitive. I’m amazed at how much her scalp actually hurt during the process of her hair falling out.
Her Geometry teacher from the Homebound program came by on Saturday afternoon.
None of us really like him much. He was very pushy and kept butting in while she was trying to work through a problem. She was quite aggravated at his method of teaching.
She received a transfusion this Saturday of 2 units of blood because her red blood cells were low. Lack of red blood cells causes anemia, which makes her tired, moody and gives her a headache.
The hardest part of the weekend came when Courtney got to go home. This upset Jordan quite a bit because Courtney is someone she can talk with and now she’s not here. Courtney gets to do the rest of her Chemotherapy as an out patient through the clinic, as long as she doesn’t run a fever. Jordan understands that Courtney has a diagnosis that is completely different and therefore the treatment is different, but it was still hard for her to see Courtney go home after a week, when Jordan has been her for almost a month.
We also found out on Saturday that Danny and Jason are not a match for Jordan’s bone marrow. My blood is still being tested. I’m hoping mine matches, so she can at least receive a related match.
This week was pretty much the same as last week. Jordan continued to run a fever and they added a second antibiotic to combat the fever. Her counts are still low to non-existent. She cannot leave the hospital unless she is fever free and has a count of at least 500.
Roger brought Madison and Noah to see Jordan on Saturday. They stayed for a couple of hours and painted a poster board with Jordan.
We also shaved Jordan’s hair off this weekend. It was matted and falling out so she decided she wanted to shave it off. Having it fall out by itself caused her scalp to be very sensitive. I’m amazed at how much her scalp actually hurt during the process of her hair falling out.
Her Geometry teacher from the Homebound program came by on Saturday afternoon.
None of us really like him much. He was very pushy and kept butting in while she was trying to work through a problem. She was quite aggravated at his method of teaching.
She received a transfusion this Saturday of 2 units of blood because her red blood cells were low. Lack of red blood cells causes anemia, which makes her tired, moody and gives her a headache.
The hardest part of the weekend came when Courtney got to go home. This upset Jordan quite a bit because Courtney is someone she can talk with and now she’s not here. Courtney gets to do the rest of her Chemotherapy as an out patient through the clinic, as long as she doesn’t run a fever. Jordan understands that Courtney has a diagnosis that is completely different and therefore the treatment is different, but it was still hard for her to see Courtney go home after a week, when Jordan has been her for almost a month.
We also found out on Saturday that Danny and Jason are not a match for Jordan’s bone marrow. My blood is still being tested. I’m hoping mine matches, so she can at least receive a related match.
Sunday, February 19, 2006
Fever continues
Jordan is still at the hospital because she is running a fever. Dr. Tebbi came in this morning and said she is getting sores in the back of her throat. Dr. Tebbi is certain that she was throwing up blood because she has sores in her esophagus, throat and maybe her stomach.
At least we now know why she was throwing up blood.
Jordan had Miriam again today as her day nurse. She’s not real crazy about Miriam. Miriam doesn’t have a lot of bedside manner. Jordan is used to the nurses being very sensitive to her and making sure she’s okay. Miriam is more the type that is all business. She does what needs to be done, but doesn’t go any further to talk with Jordan. Jordan is hoping that Tylee will be her nurse again tomorrow.
She had Dana as her night nurse tonight. Dana was new to us, but told us she was very excited to be taking care of Jordan. She had heard many nice things about Jordan, especially that she is an easy patient. I imagine they get all kinds of patients here and the little ones are terrified of the nurses, so they make their jobs tough. They squeeze their eyes shut because they don’t want eye drops, etc.
A new patient named Courtney came in on Friday (I think). She is next door to Jordan. She is 13 years old and has Lymphoma. I hope her and Jordan strike up a friendship, so they each have someone to talk to besides their parents.
I was walking back from the kitchen area today and a new boy was on the floor. He had on handcuffs and leg shackles and was walking around with two guards. Tylee said he is a juvenile offender and he’s here for treatment, just like the other kids. I never really thought about what kids would do for treatment if they were in a juvenile detention facility – I guess I know now. They come to the hospital too, but with guards.
By the end of the day Jordan noticed sores popping up in her mouth. They are quite painful and she has two medications she’s taking to help ease the pain and get rid of the sores. She cannot eat anything because it feels like it gets stuck in her throat. This is a common effect of the sores.
She had to have Dana crush all her medications and mix them in cherry syrup so that she could take them. She can’t even swallow pills anymore because of the sores.
At least we now know why she was throwing up blood.
Jordan had Miriam again today as her day nurse. She’s not real crazy about Miriam. Miriam doesn’t have a lot of bedside manner. Jordan is used to the nurses being very sensitive to her and making sure she’s okay. Miriam is more the type that is all business. She does what needs to be done, but doesn’t go any further to talk with Jordan. Jordan is hoping that Tylee will be her nurse again tomorrow.
She had Dana as her night nurse tonight. Dana was new to us, but told us she was very excited to be taking care of Jordan. She had heard many nice things about Jordan, especially that she is an easy patient. I imagine they get all kinds of patients here and the little ones are terrified of the nurses, so they make their jobs tough. They squeeze their eyes shut because they don’t want eye drops, etc.
A new patient named Courtney came in on Friday (I think). She is next door to Jordan. She is 13 years old and has Lymphoma. I hope her and Jordan strike up a friendship, so they each have someone to talk to besides their parents.
I was walking back from the kitchen area today and a new boy was on the floor. He had on handcuffs and leg shackles and was walking around with two guards. Tylee said he is a juvenile offender and he’s here for treatment, just like the other kids. I never really thought about what kids would do for treatment if they were in a juvenile detention facility – I guess I know now. They come to the hospital too, but with guards.
By the end of the day Jordan noticed sores popping up in her mouth. They are quite painful and she has two medications she’s taking to help ease the pain and get rid of the sores. She cannot eat anything because it feels like it gets stuck in her throat. This is a common effect of the sores.
She had to have Dana crush all her medications and mix them in cherry syrup so that she could take them. She can’t even swallow pills anymore because of the sores.
Saturday, February 18, 2006
Mouth sores
Jordan ran a fever on and off all last night and was given Tylenol every couple of hours to control it.
When she got up this morning, Dr. Tebbi visited her during his rounds. She was feeling okay at the time, but shortly afterwards, she started complaining about chest pain again. They are fairly certain this is all related to acid reflux. However, Dr. Tebbi came back to see her again and prescribed a medicine to take that controls yeast in case she has a yeast build up in her esophagus. Her feels like the Tums, Pepcid and other medication should be giving her relief.
She took more magic mouthwash and tums at the same time and it seemed to give her quite a bit of relief for awhile.
She threw up blood a couple of times this morning. Dr. Tebbi ordered a CT Scan of her stomach and esophagus to make sure there isn’t a problem that would cause her to throw up blood. They were not surprised that she threw up blood as it sometimes happens because the Chemo attacks the body in such a way, it can make the stomach and esophagus become very raw.
Verla came in and weighed Jordan around 8pm. She weighs 48 kgs, which is 105.6 pounds. This is almost a 3 pounds loss from yesterday. Total weight lose of 21 pounds since January 28th.
Carlee had a day pass today to go home for a few hours. Her mom was so excited. She wanted to take her to the movies, but the doctors said no. It’s too risky. She is finally eating and not in pain anymore. These doctors do amazing things on this floor.
She continues to have diarrhea pretty bad. Between this and throwing up, it’s no wonder why she continues to lose weight.
When she got up this morning, Dr. Tebbi visited her during his rounds. She was feeling okay at the time, but shortly afterwards, she started complaining about chest pain again. They are fairly certain this is all related to acid reflux. However, Dr. Tebbi came back to see her again and prescribed a medicine to take that controls yeast in case she has a yeast build up in her esophagus. Her feels like the Tums, Pepcid and other medication should be giving her relief.
She took more magic mouthwash and tums at the same time and it seemed to give her quite a bit of relief for awhile.
She threw up blood a couple of times this morning. Dr. Tebbi ordered a CT Scan of her stomach and esophagus to make sure there isn’t a problem that would cause her to throw up blood. They were not surprised that she threw up blood as it sometimes happens because the Chemo attacks the body in such a way, it can make the stomach and esophagus become very raw.
Verla came in and weighed Jordan around 8pm. She weighs 48 kgs, which is 105.6 pounds. This is almost a 3 pounds loss from yesterday. Total weight lose of 21 pounds since January 28th.
Carlee had a day pass today to go home for a few hours. Her mom was so excited. She wanted to take her to the movies, but the doctors said no. It’s too risky. She is finally eating and not in pain anymore. These doctors do amazing things on this floor.
She continues to have diarrhea pretty bad. Between this and throwing up, it’s no wonder why she continues to lose weight.
Friday, February 17, 2006
Spiked a fever
I didn’t go into work today because we were expecting Jordan to be discharged and go home. Unfortunately, we didn’t get the news we were hoping for. Jordan had a rough night last night, and wasn’t feeling well.
She was running a mild grade fever all morning, just teasing at the magic number of 100.5 She had 100.3, 100.1, 100.4 The rule for admission to the hospital is a fever of 100.5 Since she was dangerously close to the fever rule, they wouldn’t let her go home. They felt she would just end up right back here tonight or tomorrow if they let her go home.
Needless to say, this was disappointing, but we understand the risk and appreciate the doctors not taking the chance.
She also was having a lot of chest pain so they ordered another Echocardiogram and an EKG. Both test turned out normal, so they are fairly certain all the chest pain is related to acid reflux.
They called in a consult from a GI doctor to make sure it is acid reflux. The doctor felt very strongly that this is the case and ordered Pepcid to be given to her in the IV instead of the other medicine that was given by mouth.
They took blood for cultures to see if there is any reason for the fever, other than the Chemo AraC.
Initial blood results so no issues, so they believe it is related to the Chemo.
Her port bled out today, so they removed the dressing and cleaned it up. I think it was bleeding because she was sleeping on her left side, which puts pressure on the port. Since the port is accessed right now with a needle, there is an open space where blood can seep out. The nurses think that might also be the case, but they don’t take any chances and have been looking at the port again several times today to see if it bleeding any more. So far, it has not.
Her day nurse was Kim today. Tylee was off. Dani is her night nurse and came on at 7pm. By 8:30pm, Jordan was running a fever of 102.9. It’s interesting how the doctor’s nailed that one. I guess they have been doing this long enough to know it would have happened and we would have been right back in the hospital tonight if they had discharged her.
Her blood counts have taken a nose dive since Wednesday. She essentially doesn’t have any white blood cells. She is now in the danger zone for the next 7 to 10 days. Highly susceptible to all illnesses, colds, cough, etc.
They also gave her Magic Mouthwash today for the first time. They are concerned that she might have sores in her esophagus and they cannot put a scope in her mouth to check on it because her counts are too low. She has to swish and swallow the mouthwash, plus they gave her another medication to promote healing of the esophagus.
She was taken off the blood pressure medicine today. Her blood pressure is now stable since they discontinued the Decadron.
When we saw Dr. Obzut today, we asked a bunch of questions in anticipation of going home.
Jordan cannot change the paper in her bird cages and Dr. O would prefer the birds not to be in her room, because they molt and stir up bacteria in the air. She cannot change the cat box for the same reason, it makes the bacteria air born and she is too susceptible to infection. (not that I had any worries about her wanting to clean the cat box) The cat can sleep with her without any risks, but no kissing the cat.
She cannot wear her contacts, because of the risk of introducing infection into her eyes from her hands.
She cannot go to the dentist or pediatrician offices.
There is still some talk about putting her on birth control pills to prevent her from having a period. When her platelets counts are so low, they cannot risk her losing blood. When platelet counts are low, patients normally have to get blood transfusions.
I learned something new about the platelet counts. I was confused by the numbers given to me earlier. I was told that normal counts are around 150 to 450 and that Jordan’s were at 2.4 million. The 150 to 450 number is actually 150,000 to 450,000. Today her count is at 411,000, normal level, but high considering she has had 10 days of chemo, yet not really high since they were 2.4 million. She could afford to lose them and it has left her at a safe range for now. The next Chemo session will probably wipe them out.
I had a chance to look up the “Philadelphia chromosome” on the internet today. Most of what I found is that it is normally associated with CLL, not AML, so there now could be some discussion about where the diagnosis if correct. There have been documented cases of AML-M7 with the Philly, but it seems to be rare.
Dr. O said she will talk to me on Monday in more detail. She wants to sit down for about an hour to discuss where we are and where we are going with the treatment. She also wants to give me more information about the Philly, so that I can better understand the impact of it.
We found out today that Tylee (one of Jordans favorite nurses) is actually being treated for Thyroid cancer. She recently had her thyroid taken out and is still testing “hot”. We never would have had any indication that this was true, except another nurse told us.
I think this gave Jordan a bit of hope, because Tylee looks great, and it is not at all obvious that she is going through a similar situation.
Last night Jordan told me she loved this place. I thought the nurse must have given her some drugs that were making her hallucinate. I laughed when she said this and reminded her that just the other day she couldn’t wait to get out of here. This is still true, however she has really developed a friendship with these nurses and she totally trusts them with her care. They treat her will respect and involve her in her treatments. They listen to her feelings about the effect from the drugs and take her seriously when she says she doesn’t want to have a certain drug again because she doesn’t like the way it makes her feel.
This only impacts the extra drugs of course. She doesn’t have any say on the Chemo drugs, but does on things like Benadryl, Motrin, etc.
Since she was running such a high fever tonight, Dani took more blood cultures, a urine culture and a throat culture. Dr. Tebbi is on call and he’ll have everything checked to see if there is any sign of infection, especially since her counts are so low.
I have to admit that today is really the first day that Jordan looked “sick” to me. She has had some bad days, but today, I could see it in her eyes. That look your child gets in their eyes when they run a fever or have the flu is the same look she had all day today.
The nurses are amazed at how well she is actually taking the treatments and we can’t imagine how much worse it must be for others, because it is quite hard on Jordan. We are grateful that she is tolerating everything well, based on what the nurses and doctors tell us.
She was running a mild grade fever all morning, just teasing at the magic number of 100.5 She had 100.3, 100.1, 100.4 The rule for admission to the hospital is a fever of 100.5 Since she was dangerously close to the fever rule, they wouldn’t let her go home. They felt she would just end up right back here tonight or tomorrow if they let her go home.
Needless to say, this was disappointing, but we understand the risk and appreciate the doctors not taking the chance.
She also was having a lot of chest pain so they ordered another Echocardiogram and an EKG. Both test turned out normal, so they are fairly certain all the chest pain is related to acid reflux.
They called in a consult from a GI doctor to make sure it is acid reflux. The doctor felt very strongly that this is the case and ordered Pepcid to be given to her in the IV instead of the other medicine that was given by mouth.
They took blood for cultures to see if there is any reason for the fever, other than the Chemo AraC.
Initial blood results so no issues, so they believe it is related to the Chemo.
Her port bled out today, so they removed the dressing and cleaned it up. I think it was bleeding because she was sleeping on her left side, which puts pressure on the port. Since the port is accessed right now with a needle, there is an open space where blood can seep out. The nurses think that might also be the case, but they don’t take any chances and have been looking at the port again several times today to see if it bleeding any more. So far, it has not.
Her day nurse was Kim today. Tylee was off. Dani is her night nurse and came on at 7pm. By 8:30pm, Jordan was running a fever of 102.9. It’s interesting how the doctor’s nailed that one. I guess they have been doing this long enough to know it would have happened and we would have been right back in the hospital tonight if they had discharged her.
Her blood counts have taken a nose dive since Wednesday. She essentially doesn’t have any white blood cells. She is now in the danger zone for the next 7 to 10 days. Highly susceptible to all illnesses, colds, cough, etc.
They also gave her Magic Mouthwash today for the first time. They are concerned that she might have sores in her esophagus and they cannot put a scope in her mouth to check on it because her counts are too low. She has to swish and swallow the mouthwash, plus they gave her another medication to promote healing of the esophagus.
She was taken off the blood pressure medicine today. Her blood pressure is now stable since they discontinued the Decadron.
When we saw Dr. Obzut today, we asked a bunch of questions in anticipation of going home.
Jordan cannot change the paper in her bird cages and Dr. O would prefer the birds not to be in her room, because they molt and stir up bacteria in the air. She cannot change the cat box for the same reason, it makes the bacteria air born and she is too susceptible to infection. (not that I had any worries about her wanting to clean the cat box) The cat can sleep with her without any risks, but no kissing the cat.
She cannot wear her contacts, because of the risk of introducing infection into her eyes from her hands.
She cannot go to the dentist or pediatrician offices.
There is still some talk about putting her on birth control pills to prevent her from having a period. When her platelets counts are so low, they cannot risk her losing blood. When platelet counts are low, patients normally have to get blood transfusions.
I learned something new about the platelet counts. I was confused by the numbers given to me earlier. I was told that normal counts are around 150 to 450 and that Jordan’s were at 2.4 million. The 150 to 450 number is actually 150,000 to 450,000. Today her count is at 411,000, normal level, but high considering she has had 10 days of chemo, yet not really high since they were 2.4 million. She could afford to lose them and it has left her at a safe range for now. The next Chemo session will probably wipe them out.
I had a chance to look up the “Philadelphia chromosome” on the internet today. Most of what I found is that it is normally associated with CLL, not AML, so there now could be some discussion about where the diagnosis if correct. There have been documented cases of AML-M7 with the Philly, but it seems to be rare.
Dr. O said she will talk to me on Monday in more detail. She wants to sit down for about an hour to discuss where we are and where we are going with the treatment. She also wants to give me more information about the Philly, so that I can better understand the impact of it.
We found out today that Tylee (one of Jordans favorite nurses) is actually being treated for Thyroid cancer. She recently had her thyroid taken out and is still testing “hot”. We never would have had any indication that this was true, except another nurse told us.
I think this gave Jordan a bit of hope, because Tylee looks great, and it is not at all obvious that she is going through a similar situation.
Last night Jordan told me she loved this place. I thought the nurse must have given her some drugs that were making her hallucinate. I laughed when she said this and reminded her that just the other day she couldn’t wait to get out of here. This is still true, however she has really developed a friendship with these nurses and she totally trusts them with her care. They treat her will respect and involve her in her treatments. They listen to her feelings about the effect from the drugs and take her seriously when she says she doesn’t want to have a certain drug again because she doesn’t like the way it makes her feel.
This only impacts the extra drugs of course. She doesn’t have any say on the Chemo drugs, but does on things like Benadryl, Motrin, etc.
Since she was running such a high fever tonight, Dani took more blood cultures, a urine culture and a throat culture. Dr. Tebbi is on call and he’ll have everything checked to see if there is any sign of infection, especially since her counts are so low.
I have to admit that today is really the first day that Jordan looked “sick” to me. She has had some bad days, but today, I could see it in her eyes. That look your child gets in their eyes when they run a fever or have the flu is the same look she had all day today.
The nurses are amazed at how well she is actually taking the treatments and we can’t imagine how much worse it must be for others, because it is quite hard on Jordan. We are grateful that she is tolerating everything well, based on what the nurses and doctors tell us.
Thursday, February 16, 2006
Last day of Chemo for round one
Chemo - Day 10
I went to work again today and was gone all day this time. Leah from Child Life spent a bunch of time with Jordan today. They watched some movies and just hung out. Jordan had a fairly good day.
Tonight is her last night treatment of Chemo this trip. She only has one more dose in the morning.
Jordan’s World History teacher called today on my cell phone. He said the kids in the class made her a card and he wants to send it to her. Since she is supposed to get out of the hospital tomorrow, I gave him our home address. It turns out he actually lives in our neighborhood.
Suddenly this place is hopping with patients, all the rooms are full. Natalie is still here too. We met her and her parents the first night Jordan was admitted. Natalie is a 13 month old girl who has some type of Cancer. When Jordan got moved to this floor, Natalie had already been here for 45 days straight. She has already had one surgery to remove her left kidney because of a tumor. She was supposed to have surgery on Wednesday to remove a tumor in her left lung. They will also be removing half of her lung. Her blood counts are not high enough for surgery, so it has been postponed.
Jordan is still having the problem with the heart burn. They have now tried other things, but they all only give her a few minutes of relief.
Her chest X-ray was negative and her lungs are clear.
She got weighed tonight (they do this every night) and she only weighed 49.3 kilograms, which translates to 108 pounds. She has lost 10 pounds in two weeks. When she was admitted to the hospital she weighed 118 and two weeks prior to that she weighed 126. Total weight lose at this point is 18 pounds. She is looking thin now. Her collar bones, shoulder blades and hip bones are more prominent.
I went to work again today and was gone all day this time. Leah from Child Life spent a bunch of time with Jordan today. They watched some movies and just hung out. Jordan had a fairly good day.
Tonight is her last night treatment of Chemo this trip. She only has one more dose in the morning.
Jordan’s World History teacher called today on my cell phone. He said the kids in the class made her a card and he wants to send it to her. Since she is supposed to get out of the hospital tomorrow, I gave him our home address. It turns out he actually lives in our neighborhood.
Suddenly this place is hopping with patients, all the rooms are full. Natalie is still here too. We met her and her parents the first night Jordan was admitted. Natalie is a 13 month old girl who has some type of Cancer. When Jordan got moved to this floor, Natalie had already been here for 45 days straight. She has already had one surgery to remove her left kidney because of a tumor. She was supposed to have surgery on Wednesday to remove a tumor in her left lung. They will also be removing half of her lung. Her blood counts are not high enough for surgery, so it has been postponed.
Jordan is still having the problem with the heart burn. They have now tried other things, but they all only give her a few minutes of relief.
Her chest X-ray was negative and her lungs are clear.
She got weighed tonight (they do this every night) and she only weighed 49.3 kilograms, which translates to 108 pounds. She has lost 10 pounds in two weeks. When she was admitted to the hospital she weighed 118 and two weeks prior to that she weighed 126. Total weight lose at this point is 18 pounds. She is looking thin now. Her collar bones, shoulder blades and hip bones are more prominent.
Wednesday, February 15, 2006
Can't wait to go home
Chemo - Day 9
We are still expecting to go home on Friday. She gets her last Chemo for this Induction Cycle on Friday morning at 10:35 a.m. She will be able to go home if she isn’t running a fever and has a general sense of well being.
She was sick again a couple of times today. The Chemo seems to be causing this since she is no longer on the Decadron. The Decadron helps with nausea, but was causing the high blood pressure.
She also hasn’t had a bowel movement in about 5 days. This is causing her a great deal of discomfort, plus she is having terrible acid reflux, which is causing her to have heart burn. She is complaining about the heart burn a lot, so they gave her a pill to help ease it.
They also gave her something to help her go to the bathroom.
She also has a nasty cough that has been persistent for a few days now. They sent her down stairs today for a chest X-ray to make sure she isn’t coming down with anything.
She had a tough night today, very emotional. She didn’t want to get out of bed, wouldn’t take a shower. She seems to be feeling a bit depressed. Pam and Dani have been her night nurses the last week or so. They are wonderful and very protective of Jordan. Pam seems to be able to get her thinking a bit more clearly and tends to have some luck bringing her spirits back up.
No more Motrin, it has been discontinued. She isn’t complaining about back pain, which is a good sign. It means the Chemo has worked on the tumors and they must not be pressing on her back any more. Thank goodness. This doesn’t mean she is in remission yet. But at least she is relieved of the pain.
We are still expecting to go home on Friday. She gets her last Chemo for this Induction Cycle on Friday morning at 10:35 a.m. She will be able to go home if she isn’t running a fever and has a general sense of well being.
She was sick again a couple of times today. The Chemo seems to be causing this since she is no longer on the Decadron. The Decadron helps with nausea, but was causing the high blood pressure.
She also hasn’t had a bowel movement in about 5 days. This is causing her a great deal of discomfort, plus she is having terrible acid reflux, which is causing her to have heart burn. She is complaining about the heart burn a lot, so they gave her a pill to help ease it.
They also gave her something to help her go to the bathroom.
She also has a nasty cough that has been persistent for a few days now. They sent her down stairs today for a chest X-ray to make sure she isn’t coming down with anything.
She had a tough night today, very emotional. She didn’t want to get out of bed, wouldn’t take a shower. She seems to be feeling a bit depressed. Pam and Dani have been her night nurses the last week or so. They are wonderful and very protective of Jordan. Pam seems to be able to get her thinking a bit more clearly and tends to have some luck bringing her spirits back up.
No more Motrin, it has been discontinued. She isn’t complaining about back pain, which is a good sign. It means the Chemo has worked on the tumors and they must not be pressing on her back any more. Thank goodness. This doesn’t mean she is in remission yet. But at least she is relieved of the pain.
Tuesday, February 14, 2006
Happy Valentine's Day
Chemo - Day 8
Valentines Day. Madison and Noah drew Jordan cards, it was very sweet. Roger brought the kids to see Jordan. He also brought roses for her and I, with cards. It was very nice.
I went to work today again, until about 3pm. Jordan is doing fine by herself during the day. Today she went down to the lobby for a Valentine party. She went with Trisha from Child Life and they had two little boys make the trip with them. Jeffrey and Jonathon are both about 4 years old.
Jordan’s blood pressure has continued to stay high. They have given her medication to bring it down. They are also going to stop the Decadron because they believe that is what is causing the high blood pressure.
She did vomit several times today. Her blood counts are still fairly stable at this point, which is a surprise to the Doctors after 8 days of Chemo. They expect them to plummet in the next day or two.
There is talk of stopping the Motrin now too. They need to see if Jordan is running a fever at all, because if she is, the Motrin is masking it and they are not aware of it. She really shouldn’t need the Motrin anymore because the Chemo should be dissolving the tumors on her back that were causing all the pain.
We met the Homebound teachers that work at the hospital today. We should be hearing from Jordan’s actual Homebound teacher by the end of the week.
Jordan’s principal called again today and talked with her this time. He called sometime last week, but I didn’t write it down.
Jordan met Melodie today. She is a girl about her age that also has Leukemia, but she has ALL. She came in for Chemo. Tylee introduced them to each other. I’m hoping Jordan will make some friends while she is here. As of right now though, she is not interested. She doesn’t want to be associated with other sick kids, because she says everyone will know she is sick too. I think in time her feelings will change about this, but you cannot rush her into acceptance. It will come when she is ready.
I met Debbie (Carlee’s mom) tonight. Carlee is a four year old little girl who was diagnosed with ALL (another form of Leukemia) on January 11th. She was admitted to the hospital that day and hasn’t been able to go home yet. She has suffered from every possible side effect that can occur from Chemo. Right now she has some sort of infection in her intestines and hasn’t been able to eat or drink anything for over 2 weeks. She is getting nutrition through an IV. Her mom said the Doctors tell her this condition is extremely painful, which explains why Carlee is hooked up to a Morphine PCA. We have seen them walking the halls occasionally and Carlee complains or cries during the entire walk, because she is in pain. Debbie said that Carlee had a bunch of bruises on her legs one day and within a couple days they were gone, so she didn’t think much of it. But on a Monday morning, Carlee woke up with an enormous bruise covering her elbow. She didn’t go to bed with it, so Debbie knew something wasn’t right. She went to the doctor and the doctor felt her stomach and said her spleen was enlarged and when he looked into her mouth, it was completely white. She didn’t have any red blood cells. She was admitted that day and was quickly diagnosed with ALL. She is in remission now and still has all her hair. They just need to get rid of the intestine infection so she can eat and drink, which will allow her to go home.
Valentines Day. Madison and Noah drew Jordan cards, it was very sweet. Roger brought the kids to see Jordan. He also brought roses for her and I, with cards. It was very nice.
I went to work today again, until about 3pm. Jordan is doing fine by herself during the day. Today she went down to the lobby for a Valentine party. She went with Trisha from Child Life and they had two little boys make the trip with them. Jeffrey and Jonathon are both about 4 years old.
Jordan’s blood pressure has continued to stay high. They have given her medication to bring it down. They are also going to stop the Decadron because they believe that is what is causing the high blood pressure.
She did vomit several times today. Her blood counts are still fairly stable at this point, which is a surprise to the Doctors after 8 days of Chemo. They expect them to plummet in the next day or two.
There is talk of stopping the Motrin now too. They need to see if Jordan is running a fever at all, because if she is, the Motrin is masking it and they are not aware of it. She really shouldn’t need the Motrin anymore because the Chemo should be dissolving the tumors on her back that were causing all the pain.
We met the Homebound teachers that work at the hospital today. We should be hearing from Jordan’s actual Homebound teacher by the end of the week.
Jordan’s principal called again today and talked with her this time. He called sometime last week, but I didn’t write it down.
Jordan met Melodie today. She is a girl about her age that also has Leukemia, but she has ALL. She came in for Chemo. Tylee introduced them to each other. I’m hoping Jordan will make some friends while she is here. As of right now though, she is not interested. She doesn’t want to be associated with other sick kids, because she says everyone will know she is sick too. I think in time her feelings will change about this, but you cannot rush her into acceptance. It will come when she is ready.
I met Debbie (Carlee’s mom) tonight. Carlee is a four year old little girl who was diagnosed with ALL (another form of Leukemia) on January 11th. She was admitted to the hospital that day and hasn’t been able to go home yet. She has suffered from every possible side effect that can occur from Chemo. Right now she has some sort of infection in her intestines and hasn’t been able to eat or drink anything for over 2 weeks. She is getting nutrition through an IV. Her mom said the Doctors tell her this condition is extremely painful, which explains why Carlee is hooked up to a Morphine PCA. We have seen them walking the halls occasionally and Carlee complains or cries during the entire walk, because she is in pain. Debbie said that Carlee had a bunch of bruises on her legs one day and within a couple days they were gone, so she didn’t think much of it. But on a Monday morning, Carlee woke up with an enormous bruise covering her elbow. She didn’t go to bed with it, so Debbie knew something wasn’t right. She went to the doctor and the doctor felt her stomach and said her spleen was enlarged and when he looked into her mouth, it was completely white. She didn’t have any red blood cells. She was admitted that day and was quickly diagnosed with ALL. She is in remission now and still has all her hair. They just need to get rid of the intestine infection so she can eat and drink, which will allow her to go home.
Sunday, February 12, 2006
Moved to a larger room
Chemo - Day 6
She didn’t get much sleep last night because the 10 hour Chemo session is interrupted quite a bit. During the 4 hour DAUN IV drip, her blood pressure has to be taken every 15 minutes. We are hoping that during her next cycle, they will do these long sessions during the day instead of at night. At least her nights should be more peaceful, even though she still gets woken up every four hours for vitals and eye drops.
The rest of this week should go smoothly, as she will get the GMTZ today and then she only has the AraC pushes for the next four days.
Hopefully the aching in her legs will subside. Her back pain seems to be diminishing and she mostly complains about her legs aching. This is a common side effect from the Chemo and it seems to bother her quite a bit.
Her nurse Tylee removed the needles from her port today and left them off for a few hours. The area from the port looked like it is healing nicely. She actually has two ports under the skin. They put in two of them because when she went into surgery they were still going with the notion that she had bone cancer. Bone cancer requires two ports for treatment. When she goes home they will take out the needle and you won’t really be able to tell she has the port under the surface. It will be noticeable to her and anyone who looks closely, because the skin rises up just a bit.
When Tylee accessed the port again, she only put in one needle, since they only need one to treat Leukemia.
They moved us to Room 233 today. It’s a much bigger room and has enough space to allow for a blow up air mattress if I want to bring one to sleep on. I’ve been sleeping in a recliner, next to her bed this whole time. It’s comfortable enough, and I’m able to get a good amount of sleep, even through all the interruptions with the Nurse’s taking her blood pressure and temperature.
She didn’t get much sleep last night because the 10 hour Chemo session is interrupted quite a bit. During the 4 hour DAUN IV drip, her blood pressure has to be taken every 15 minutes. We are hoping that during her next cycle, they will do these long sessions during the day instead of at night. At least her nights should be more peaceful, even though she still gets woken up every four hours for vitals and eye drops.
The rest of this week should go smoothly, as she will get the GMTZ today and then she only has the AraC pushes for the next four days.
Hopefully the aching in her legs will subside. Her back pain seems to be diminishing and she mostly complains about her legs aching. This is a common side effect from the Chemo and it seems to bother her quite a bit.
Her nurse Tylee removed the needles from her port today and left them off for a few hours. The area from the port looked like it is healing nicely. She actually has two ports under the skin. They put in two of them because when she went into surgery they were still going with the notion that she had bone cancer. Bone cancer requires two ports for treatment. When she goes home they will take out the needle and you won’t really be able to tell she has the port under the surface. It will be noticeable to her and anyone who looks closely, because the skin rises up just a bit.
When Tylee accessed the port again, she only put in one needle, since they only need one to treat Leukemia.
They moved us to Room 233 today. It’s a much bigger room and has enough space to allow for a blow up air mattress if I want to bring one to sleep on. I’ve been sleeping in a recliner, next to her bed this whole time. It’s comfortable enough, and I’m able to get a good amount of sleep, even through all the interruptions with the Nurse’s taking her blood pressure and temperature.
Saturday, February 11, 2006
Chemo continues - Day 5
Chemo - Day 5
Dr. Rossbach came in this morning during his rounds. Jordan expressed that she has a persistent cough, which he says is symptomatic of the Chemo, but that if it doesn’t get better by tomorrow, he’ll order a chest X-ray. Jordan asked him if she’d be able to go home after day 10 even if she still has this cough, thankfully he said yes. She would have been very upset if he would have said no. She is very anxious to get out of the hospital and is focusing on Friday as the day she gets to go home.
He also mentioned that she has a Herpes type virus in her blood that is normally associated with cold sores in the mouth. He says her body is fighting it fine, but since her immune system will be suppressed, he’s going to give her a medication to fight it off.
Mouth sores are common in patients that are undergoing Chemo. Mouth care is essential in preventing the sores from appearing. Some people get mouth sores all over the inside of their mouth and they have to use “magic mouthwash” which has lidicain to ease the pain.
Tonight is Jordan’s last night of 10 hour Chemo for this session. For the next five days she’ll just get the AraC push every twelve hours and tomorrow she gets one new drug which she hasn’t had yet.
This new drug, GMTZ, is a fairly strong poison that attacks the cells with Leukemia. Dr. Rossbach used to work with the doctors that invented this drug and he says that one dose if plenty. They used to give patients about 18 mg of it and now they only give them 2-3 mgs.
Dr. Rossbach described it by saying that Leukemia cells have this outward structure, like a nose on a face. This drug GMTZ, attaches specifically to cells with this “nose” structure. Unfortunately, some patients have a similar cell structure on the cells of their liver and those cells also get attacked, even those they are not Leukemia cells.
Since they now give a much smaller dose of the drug, they don’t really see patients having liver problems any longer. Jordan should be fine and can expect not to have any side effects from this dose.
In reviewing her protocol today, I noticed that the next cycle of Chemo is only an 8 day session instead of 10 days.
Jordan will finish up this 10 day cycle on Thursday and should be able to go home on Friday. Friday will be day 11 and she’ll have to return on day 29 which is March 7, 2006. If she only stays in the hospital for the 8 days of treatment, she should be able to go home on March 15. At this point, we don’t know what day the third cycle will start.
Dr. Rossbach came in this morning during his rounds. Jordan expressed that she has a persistent cough, which he says is symptomatic of the Chemo, but that if it doesn’t get better by tomorrow, he’ll order a chest X-ray. Jordan asked him if she’d be able to go home after day 10 even if she still has this cough, thankfully he said yes. She would have been very upset if he would have said no. She is very anxious to get out of the hospital and is focusing on Friday as the day she gets to go home.
He also mentioned that she has a Herpes type virus in her blood that is normally associated with cold sores in the mouth. He says her body is fighting it fine, but since her immune system will be suppressed, he’s going to give her a medication to fight it off.
Mouth sores are common in patients that are undergoing Chemo. Mouth care is essential in preventing the sores from appearing. Some people get mouth sores all over the inside of their mouth and they have to use “magic mouthwash” which has lidicain to ease the pain.
Tonight is Jordan’s last night of 10 hour Chemo for this session. For the next five days she’ll just get the AraC push every twelve hours and tomorrow she gets one new drug which she hasn’t had yet.
This new drug, GMTZ, is a fairly strong poison that attacks the cells with Leukemia. Dr. Rossbach used to work with the doctors that invented this drug and he says that one dose if plenty. They used to give patients about 18 mg of it and now they only give them 2-3 mgs.
Dr. Rossbach described it by saying that Leukemia cells have this outward structure, like a nose on a face. This drug GMTZ, attaches specifically to cells with this “nose” structure. Unfortunately, some patients have a similar cell structure on the cells of their liver and those cells also get attacked, even those they are not Leukemia cells.
Since they now give a much smaller dose of the drug, they don’t really see patients having liver problems any longer. Jordan should be fine and can expect not to have any side effects from this dose.
In reviewing her protocol today, I noticed that the next cycle of Chemo is only an 8 day session instead of 10 days.
Jordan will finish up this 10 day cycle on Thursday and should be able to go home on Friday. Friday will be day 11 and she’ll have to return on day 29 which is March 7, 2006. If she only stays in the hospital for the 8 days of treatment, she should be able to go home on March 15. At this point, we don’t know what day the third cycle will start.
Friday, February 10, 2006
Family goes home to California
Chemo - Day 4
Day 4 Chemo is the same as Day 2. She only had a push this morning at 10:35pm. Donna, Tom, Danny, Jody and Jason all left today to fly home. Donna and Danny plan to fly back when Jordan starts her next session of Chemo. Donna was heartbroken when she left. She so badly wishes she could be here the whole time.
Jordan still has a knot in her back where they did the bone marrow test. It is like a bruise under the skin and it bothers her a little bit.
Jordan walked a couple of laps around the floor to stretch her legs. We also took a wheelchair ride down to the cafeteria because she was feeling hungry. Unfortunately, the ride to the cafeteria upset her stomach and she wasn’t feeling well for about an hour or so afterwards.
Dr. O told her the other day that she has to use an electric razor to shave her legs and armpits because she cannot risk a cut while shaving because of the possibility of infection. Once her white blood cells go down, she won’t be able to fight off infections, colds or other illness. Running a fever will become very dangerous for her and needs to be taken seriously.
We met Dr. Rossbach today when he was making rounds. I briefly met him yesterday, but Jordan hadn’t seen him yet.
Dr. R told us a couple of interesting facts about Jordan’s Leukemia. First of all, she has a very rare sub type called M7. Normally this sub type is only seen in patients who have Down Syndrome. He teased Jordan a little bit and said she obviously didn’t read the manual before she came down with this, because she isn’t supposed to have M7.
Another interesting thing he told us had to do with her receiving bone marrow from Jason. If Jason is an exact match and we do the bone marrow transplant, her blood will from that point forward always indicate her as a male. It doesn’t change her characteristics at all, but her blood will be coming from the male bone marrow, which produces male blood cells, red and white. He told her that if she ever tried to enter the Olympics that they wouldn’t let her classify herself as a girl, because the blood tests would say she is a boy. I’m guessing that she would have to provide proof of such to be able to qualify. (She doesn’t have any Olympic ambitions, so we don’t expect this to be a problem.) This is true for any person who receives bone marrow from the opposite sex.
Dr. Tebbi and Dr. Wynn also came to see her today and told us they got back the results of the genetic testing and it showed a genetic factor to the Leukemia. I don’t totally understand what they were explaining and I’ll wait for Dr. O to come in next week and tell us again. They mentioned that this genetic result explains something to them, it seemed an important piece of the puzzle and that they will most likely administer an additional medicine that deals with this specific factor.
Day 4 Chemo is the same as Day 2. She only had a push this morning at 10:35pm. Donna, Tom, Danny, Jody and Jason all left today to fly home. Donna and Danny plan to fly back when Jordan starts her next session of Chemo. Donna was heartbroken when she left. She so badly wishes she could be here the whole time.
Jordan still has a knot in her back where they did the bone marrow test. It is like a bruise under the skin and it bothers her a little bit.
Jordan walked a couple of laps around the floor to stretch her legs. We also took a wheelchair ride down to the cafeteria because she was feeling hungry. Unfortunately, the ride to the cafeteria upset her stomach and she wasn’t feeling well for about an hour or so afterwards.
Dr. O told her the other day that she has to use an electric razor to shave her legs and armpits because she cannot risk a cut while shaving because of the possibility of infection. Once her white blood cells go down, she won’t be able to fight off infections, colds or other illness. Running a fever will become very dangerous for her and needs to be taken seriously.
We met Dr. Rossbach today when he was making rounds. I briefly met him yesterday, but Jordan hadn’t seen him yet.
Dr. R told us a couple of interesting facts about Jordan’s Leukemia. First of all, she has a very rare sub type called M7. Normally this sub type is only seen in patients who have Down Syndrome. He teased Jordan a little bit and said she obviously didn’t read the manual before she came down with this, because she isn’t supposed to have M7.
Another interesting thing he told us had to do with her receiving bone marrow from Jason. If Jason is an exact match and we do the bone marrow transplant, her blood will from that point forward always indicate her as a male. It doesn’t change her characteristics at all, but her blood will be coming from the male bone marrow, which produces male blood cells, red and white. He told her that if she ever tried to enter the Olympics that they wouldn’t let her classify herself as a girl, because the blood tests would say she is a boy. I’m guessing that she would have to provide proof of such to be able to qualify. (She doesn’t have any Olympic ambitions, so we don’t expect this to be a problem.) This is true for any person who receives bone marrow from the opposite sex.
Dr. Tebbi and Dr. Wynn also came to see her today and told us they got back the results of the genetic testing and it showed a genetic factor to the Leukemia. I don’t totally understand what they were explaining and I’ll wait for Dr. O to come in next week and tell us again. They mentioned that this genetic result explains something to them, it seemed an important piece of the puzzle and that they will most likely administer an additional medicine that deals with this specific factor.
Thursday, February 9, 2006
Donor needed HLA testing begins
Chemo - Day 3
Day 3 Chemo is just like Day 1. It’s the same overnight process and the same push 12 hours later. She has been given several other medications to prevent nausea, pain and acid reflux. She hasn’t thrown up since yesterday at 11 am.
Danny had his blood drawn today for the HLA testing. I need to have my drawn too, but since they are going home tomorrow, he needed to get his done now.
Dad and Sharon arrived with Mackenna. They are staying at our house until Saturday. They brought Jordan a collage with lots of pictures of her and the family. We hung it up on her door where she can see it any time.
Donna stayed the night again with Jordan tonight.
Day 3 Chemo is just like Day 1. It’s the same overnight process and the same push 12 hours later. She has been given several other medications to prevent nausea, pain and acid reflux. She hasn’t thrown up since yesterday at 11 am.
Danny had his blood drawn today for the HLA testing. I need to have my drawn too, but since they are going home tomorrow, he needed to get his done now.
Dad and Sharon arrived with Mackenna. They are staying at our house until Saturday. They brought Jordan a collage with lots of pictures of her and the family. We hung it up on her door where she can see it any time.
Donna stayed the night again with Jordan tonight.
Wednesday, February 8, 2006
More family arrives
Chemo - Day 2
Jordan was a bit sick today, some due to her nerves and some of it due to the Chemo. She also slept a lot. She had the “push” of Chemo this morning at 10:35 and doesn’t have any more until tonight at 10:35 pm.
Jason, Jody and Tom arrived today. They flew late last night and arrived at the hospital about 10:30 am. They arrived right in the middle of her having a bad episode. She was in a lot of pain, and throwing up. She had a panic attack because her back started to ache and I asked her when her last Motrin was given. She started to get a bit frantic because she thought the last time she had Motrin was at 11pm the night before and now it was 11 am. She is supposed to have Motrin every 6 hours. She started saying that the Nurse forgot to give her the dose and now she was in pain. When she gets anxious, her mood and pain changes dramatically. In actuality the Nurse didn’t forget to give her the Motrin and she was just about due for another dose. Once she got the new dose and after she threw up, she felt much better and was able to calm down and visit with everyone.
Jason had blood drawn today to have HLA typing done. They are testing for A,B,C and DR typing. I don’t know what this means, but apparently it is the preliminary tests to determine if he can be a bone marrow match to Jordan. If these are found to match, they do further testing. He has a 25% chance of matching her exactly. We are keeping our fingers crossed that he matches. If he matches, Jordan will benefit from getting his bone marrow and will undergo less Chemo. They would have to harvest Jason’s bone marrow and transplant it into Jordan. A bone marrow transplant isn’t done until after the 3rd session of Chemo. They first have to make sure she doesn’t have any signs of Leukemia in her body before they transplant healthy bone marrow.
Jordan had the same nurses today, Aimee at night and Tylee during the day. At the end of the day shift Tylee gave Jordan some concoction of medicine that made her very loopy. Danny and I were laughing so hard at how she was behaving. The medicine affected her and it seemed like she was drunk or high on drugs. At least now we’ll know how she’ll act if she ever tries drinking or drugs. Danny video taped her a bit, but watching the video is nothing like how she was behaving. It was fun night and we needed the entertainment, and more importantly she needed the laugh too. It was good for her.
Jordan was a bit sick today, some due to her nerves and some of it due to the Chemo. She also slept a lot. She had the “push” of Chemo this morning at 10:35 and doesn’t have any more until tonight at 10:35 pm.
Jason, Jody and Tom arrived today. They flew late last night and arrived at the hospital about 10:30 am. They arrived right in the middle of her having a bad episode. She was in a lot of pain, and throwing up. She had a panic attack because her back started to ache and I asked her when her last Motrin was given. She started to get a bit frantic because she thought the last time she had Motrin was at 11pm the night before and now it was 11 am. She is supposed to have Motrin every 6 hours. She started saying that the Nurse forgot to give her the dose and now she was in pain. When she gets anxious, her mood and pain changes dramatically. In actuality the Nurse didn’t forget to give her the Motrin and she was just about due for another dose. Once she got the new dose and after she threw up, she felt much better and was able to calm down and visit with everyone.
Jason had blood drawn today to have HLA typing done. They are testing for A,B,C and DR typing. I don’t know what this means, but apparently it is the preliminary tests to determine if he can be a bone marrow match to Jordan. If these are found to match, they do further testing. He has a 25% chance of matching her exactly. We are keeping our fingers crossed that he matches. If he matches, Jordan will benefit from getting his bone marrow and will undergo less Chemo. They would have to harvest Jason’s bone marrow and transplant it into Jordan. A bone marrow transplant isn’t done until after the 3rd session of Chemo. They first have to make sure she doesn’t have any signs of Leukemia in her body before they transplant healthy bone marrow.
Jordan had the same nurses today, Aimee at night and Tylee during the day. At the end of the day shift Tylee gave Jordan some concoction of medicine that made her very loopy. Danny and I were laughing so hard at how she was behaving. The medicine affected her and it seemed like she was drunk or high on drugs. At least now we’ll know how she’ll act if she ever tries drinking or drugs. Danny video taped her a bit, but watching the video is nothing like how she was behaving. It was fun night and we needed the entertainment, and more importantly she needed the laugh too. It was good for her.
Tuesday, February 7, 2006
Chemo begins
Chemo - Day 1
Jordan went downstairs in the morning around 10:30 for her lumbar puncture to have the Chemo put into her spinal column. They use a light anesthetic for the procedure that makes her sleep, but she doesn’t have a tube in her throat.
The procedure took about 15 minutes. She had to remain laying flat for the next 45 minutes and was then able to go back to her room.
The rest of the day was fairly uneventful. Jordan does have times where she is in a lot of pain and it’s hard to calm her down. They are now treating her anxiety with medication, to keep her nerves calm so she doesn’t have more pain and nausea.
Jordan watches the clock very carefully and knows exactly when she should be getting her next dose of Motrin. If the nurse is even a few minutes late, panic starts to set in and she kind of falls apart. The nurses have learned to combat this by making sure she has what she needs on time.
Jordan spiked a fever today and it got up to 102.5. She was able to break it on her own without any medication.
Tonight she underwent her first Chemo treatment via the port. It was a session that lasted all night. She slept through most of it, although one of the medicines requires them to take her blood pressure every 15 minutes. They strapped a blood pressure cuff to her ankle and the computer just starts the pressure at every 15 minute interval. Donna spent the night with her tonight and I went home for a night.
There is a protocol for her Chemo. The term protocol is what they use, and it indicates a schedule. For example: Day 1 she had the all night session that began at 10:35 pm. In the morning she gets a push (injection by syringe) of one of the same drugs from the night session. She doesn’t have any more Chemo drugs on day one, until 10:35 pm that night, which is when Day 2 begins. Her zero hour is 22:35, each day at this time begins the new day.
Her protocol is intense Chemo for 10 days. They talk about everything in days during this process. At the end of day 10, she will be able to go home as long as she is well. She cannot be running a fever, needs to be able to eat and hold down food, use the bathroom and be able to stand, walk, shower, etc without help. Chemo makes you weak, and they won’t send her home if she cannot take care of herself in these ways.
Day 29 she will return for the next 10 days session. The second 10 day session is exactly the same as the first 10 day session.
Jordan went downstairs in the morning around 10:30 for her lumbar puncture to have the Chemo put into her spinal column. They use a light anesthetic for the procedure that makes her sleep, but she doesn’t have a tube in her throat.
The procedure took about 15 minutes. She had to remain laying flat for the next 45 minutes and was then able to go back to her room.
The rest of the day was fairly uneventful. Jordan does have times where she is in a lot of pain and it’s hard to calm her down. They are now treating her anxiety with medication, to keep her nerves calm so she doesn’t have more pain and nausea.
Jordan watches the clock very carefully and knows exactly when she should be getting her next dose of Motrin. If the nurse is even a few minutes late, panic starts to set in and she kind of falls apart. The nurses have learned to combat this by making sure she has what she needs on time.
Jordan spiked a fever today and it got up to 102.5. She was able to break it on her own without any medication.
Tonight she underwent her first Chemo treatment via the port. It was a session that lasted all night. She slept through most of it, although one of the medicines requires them to take her blood pressure every 15 minutes. They strapped a blood pressure cuff to her ankle and the computer just starts the pressure at every 15 minute interval. Donna spent the night with her tonight and I went home for a night.
There is a protocol for her Chemo. The term protocol is what they use, and it indicates a schedule. For example: Day 1 she had the all night session that began at 10:35 pm. In the morning she gets a push (injection by syringe) of one of the same drugs from the night session. She doesn’t have any more Chemo drugs on day one, until 10:35 pm that night, which is when Day 2 begins. Her zero hour is 22:35, each day at this time begins the new day.
Her protocol is intense Chemo for 10 days. They talk about everything in days during this process. At the end of day 10, she will be able to go home as long as she is well. She cannot be running a fever, needs to be able to eat and hold down food, use the bathroom and be able to stand, walk, shower, etc without help. Chemo makes you weak, and they won’t send her home if she cannot take care of herself in these ways.
Day 29 she will return for the next 10 days session. The second 10 day session is exactly the same as the first 10 day session.
Monday, February 6, 2006
Diagnosis Day
Jordan is still having back pain, and for the most part they manage it with Motrin. She had an Echocardigram today. (an ultrasound on her heart) This is just used as a baseline to measure the effects of her condition and/or treatment on her heart.
Freddie Solomon from the SF 49er’s came to visit Jordan today. Danny’s dad, Eddie Pounds knows a bunch of the 49er’s from the 80’s because he worked at the 49er Training Camp. Freddie was from the Tampa Bay Area and when he retired from football her returned here. Freddie was in two Super Bowls, number 16 and 19 and he has two Super Bowl rings.
Dr. O came to see us today to give us a diagnosis. She talked with Danny, Donna and I. It turns out that Jordan has Leukemia. This sounds terrible, but it really is the best case scenario, except of course that it was nothing. The bone cancer possibilities were much scarier, especially since it seemed that it would have been at an advanced stage.
Leukemia is a cancer that affects the bone marrow. Since it’s in her bone marrow it causes lesions to occur in any place where bone exists. This explains why she has lesions throughout her body.
Normally Leukemia is not diagnosed from MRI’s or Bone Scans. Since we approached this from the opposite angle because of her back pain, her doctors looked at other studies and found them consistent with Jordan’s symptoms.
The good news is that Chemotherapy dissolves lesions that are caused by Leukemia. Jordan won’t have to undergo surgery to remove any tumors and she won’t have to have radiation therapy.
Her spinal fluid is clear and shows no signs of Leukemia. Dr. O is still waiting for the bone marrow biopsy to be completed, but based on all other tests, they feel that she has Acute Mylogenous Leukemia (AML). Their diagnosis is 95% confirmed at this point and when they get the bone marrow results back, they expect it to fully confirm it.
She is to start Chemotherapy tomorrow. The first treatment will be during a Lumbar Puncture (spinal tap). During this procedure they will inject Chemo into the spinal fluid. This is used as a preventative measure to keep her spinal column clear of Leukemia.
Dr. O came in and talked with Jordan and explained the diagnosis. Jordan did break down and told Dr. O she didn’t want to hear any more about it. Dr. O waited for a few minutes and then Jordan asked her a few questions. I took this as a good sign, because she wanted to hear more about it and how it was going to affect her. Dr. O is a very patient and sensitive doctor. She is always honest with Jordan and answers all her questions truthfully.
One of Jordan’s biggest fears is that all of her hair will fall out. She has always had beautiful thick, curly hair and she doesn’t want to lose it. There is a slight chance it won’t fall out, because some patients don’t actually lose their hair. The odds are against that, but it is still a possibility.
Jordan’s night nurse was Aimee. At first Jordan didn’t think she would like her but after giving her a chance, she actually likes her very much.
Freddie Solomon from the SF 49er’s came to visit Jordan today. Danny’s dad, Eddie Pounds knows a bunch of the 49er’s from the 80’s because he worked at the 49er Training Camp. Freddie was from the Tampa Bay Area and when he retired from football her returned here. Freddie was in two Super Bowls, number 16 and 19 and he has two Super Bowl rings.
Dr. O came to see us today to give us a diagnosis. She talked with Danny, Donna and I. It turns out that Jordan has Leukemia. This sounds terrible, but it really is the best case scenario, except of course that it was nothing. The bone cancer possibilities were much scarier, especially since it seemed that it would have been at an advanced stage.
Leukemia is a cancer that affects the bone marrow. Since it’s in her bone marrow it causes lesions to occur in any place where bone exists. This explains why she has lesions throughout her body.
Normally Leukemia is not diagnosed from MRI’s or Bone Scans. Since we approached this from the opposite angle because of her back pain, her doctors looked at other studies and found them consistent with Jordan’s symptoms.
The good news is that Chemotherapy dissolves lesions that are caused by Leukemia. Jordan won’t have to undergo surgery to remove any tumors and she won’t have to have radiation therapy.
Her spinal fluid is clear and shows no signs of Leukemia. Dr. O is still waiting for the bone marrow biopsy to be completed, but based on all other tests, they feel that she has Acute Mylogenous Leukemia (AML). Their diagnosis is 95% confirmed at this point and when they get the bone marrow results back, they expect it to fully confirm it.
She is to start Chemotherapy tomorrow. The first treatment will be during a Lumbar Puncture (spinal tap). During this procedure they will inject Chemo into the spinal fluid. This is used as a preventative measure to keep her spinal column clear of Leukemia.
Dr. O came in and talked with Jordan and explained the diagnosis. Jordan did break down and told Dr. O she didn’t want to hear any more about it. Dr. O waited for a few minutes and then Jordan asked her a few questions. I took this as a good sign, because she wanted to hear more about it and how it was going to affect her. Dr. O is a very patient and sensitive doctor. She is always honest with Jordan and answers all her questions truthfully.
One of Jordan’s biggest fears is that all of her hair will fall out. She has always had beautiful thick, curly hair and she doesn’t want to lose it. There is a slight chance it won’t fall out, because some patients don’t actually lose their hair. The odds are against that, but it is still a possibility.
Jordan’s night nurse was Aimee. At first Jordan didn’t think she would like her but after giving her a chance, she actually likes her very much.
Sunday, February 5, 2006
Port surgery
Jordan went downstairs at 9am for her surgery to put the port in and to have the other two tests done. We met Dr. Martinez, he is a general Pediatric Surgeon. He is putting in the port. Dr. O will be conducting the other two tests.
Dr. Martinez talked with Jordan, Danny and I before the procedure. He mentioned that there are possible complications during the surgery and that one of them would be in the case that he has to use a needle to find her vein. If he uses a needle, he takes the risk of puncturing her lung, and would have to then put a tube in her lower rib cage to re-inflate the lung. This news really scared Jordan and she started crying. Needless to say, Dr. Martinez doesn’t seem to have a very good bed side manner.
I’m amazed at how Jordan’s condition and high anxiety level are not communicated as she is passed from floor to floor for different tests. She is very anxious, as any normal person would be. The problem with her anxiety is that it escalates and then her body becomes very tense, which causes her back pain to skyrocket. She then becomes nauseous and vomits, cries a lot and it is hard to console her.
When Dr. Martinez told her the possible risks of the surgery, she basically lost it. Here is a girl who already has to deal with so much, she didn’t need to know the risks of the surgery. He could have told Danny and I and it would have been fine, but he just blurted it all out, without any regard to her feelings. I did pull him aside and asked him not to share anything else like that in front of her again. We would tell her that kind of information if we felt she needed to know about it and could handle the information.
Luckily the surgery went fine and there weren’t any complications. The port is now available for the nurses to access for whatever reason necessary.
The results of the bone marrow and spinal tap will be back in about 24 hours.
After she recovered from the surgery they took her back to her room. She didn’t stay there very long, because they moved her to the Cancer Institute wing of the hospital. Dr. O wanted to make sure she had a room in that wing, because Monday’s are normally very busy with a lot of patients coming in for treatment. She is now in room 228 on the Pediatric Oncology/Hematology floor. This floor consists of Pediatric Cancer patients as well as those who suffer from blood disorders like Sickle Cell Anemia, Hemophilia, etc.
Dr. Martinez talked with Jordan, Danny and I before the procedure. He mentioned that there are possible complications during the surgery and that one of them would be in the case that he has to use a needle to find her vein. If he uses a needle, he takes the risk of puncturing her lung, and would have to then put a tube in her lower rib cage to re-inflate the lung. This news really scared Jordan and she started crying. Needless to say, Dr. Martinez doesn’t seem to have a very good bed side manner.
I’m amazed at how Jordan’s condition and high anxiety level are not communicated as she is passed from floor to floor for different tests. She is very anxious, as any normal person would be. The problem with her anxiety is that it escalates and then her body becomes very tense, which causes her back pain to skyrocket. She then becomes nauseous and vomits, cries a lot and it is hard to console her.
When Dr. Martinez told her the possible risks of the surgery, she basically lost it. Here is a girl who already has to deal with so much, she didn’t need to know the risks of the surgery. He could have told Danny and I and it would have been fine, but he just blurted it all out, without any regard to her feelings. I did pull him aside and asked him not to share anything else like that in front of her again. We would tell her that kind of information if we felt she needed to know about it and could handle the information.
Luckily the surgery went fine and there weren’t any complications. The port is now available for the nurses to access for whatever reason necessary.
The results of the bone marrow and spinal tap will be back in about 24 hours.
After she recovered from the surgery they took her back to her room. She didn’t stay there very long, because they moved her to the Cancer Institute wing of the hospital. Dr. O wanted to make sure she had a room in that wing, because Monday’s are normally very busy with a lot of patients coming in for treatment. She is now in room 228 on the Pediatric Oncology/Hematology floor. This floor consists of Pediatric Cancer patients as well as those who suffer from blood disorders like Sickle Cell Anemia, Hemophilia, etc.
Saturday, February 4, 2006
Mom goes back to work
Chemo - Day 7
I went to work this morning, leaving Jordan in the hospital alone for the first time. She did fine, I was more nervous than her. I called a couple of times to talk with her and to make sure she was doing okay. I left work at about 1pm to go to back to the hospital.
Her blood pressure started to elevate a little bit today. It was random, so they will keep an eye on it.
I finally talked to Dr. Obzut about the genetic factor and she explained it a little bit more, but I still don’t have a full understanding of it. She mentioned the words “Philadelphia Chromosome”, but I’ll have to get on the internet and see what I can find out about it
I went to work this morning, leaving Jordan in the hospital alone for the first time. She did fine, I was more nervous than her. I called a couple of times to talk with her and to make sure she was doing okay. I left work at about 1pm to go to back to the hospital.
Her blood pressure started to elevate a little bit today. It was random, so they will keep an eye on it.
I finally talked to Dr. Obzut about the genetic factor and she explained it a little bit more, but I still don’t have a full understanding of it. She mentioned the words “Philadelphia Chromosome”, but I’ll have to get on the internet and see what I can find out about it
Finally - A Day of Rest
No tests today, she has the day off and needs it. Since we arrived last Thursday, it’s been one test after another. We met Dr. Obzut for the first time today. She is one of the four Oncologists in the practice. The practice consists of Drs. Tebbi, Wynn, Obzut and Rossbach. Dr. O is the only woman.
Dr. O ordered Jordan to get a medi-port put into her chest below her left collar bone. The port is a permanent IV line that is placed under the skin. It is used for IV fluids, medications, chemo and to draw blood. The biggest benefit is that they don’t ever have to poke her with a needle anymore. All blood work and medications are done through the port.
The port will be put in tomorrow. She has to undergo surgery for the procedure. At the same time she is under anesthesia they are going to do a bone marrow draw and a spinal tap to pull out some of her spinal fluid. These tests will be used to properly diagnose her condition. They are looking to see if she has Leukemia, which is a cancer of the bone marrow.
They removed the PCA. Dr. O doesn’t want Jordan to have Morphine unless absolutely necessary. Since it’s a narcotic, it can become addictive, plus it can cause problems with her bowels.
We found out today that her bone scan shows that she has lesions all of her body. She has them on her skull, arms and legs. We already knew she had them covering her spine, hips and ribs.
Dr. O ordered Jordan to get a medi-port put into her chest below her left collar bone. The port is a permanent IV line that is placed under the skin. It is used for IV fluids, medications, chemo and to draw blood. The biggest benefit is that they don’t ever have to poke her with a needle anymore. All blood work and medications are done through the port.
The port will be put in tomorrow. She has to undergo surgery for the procedure. At the same time she is under anesthesia they are going to do a bone marrow draw and a spinal tap to pull out some of her spinal fluid. These tests will be used to properly diagnose her condition. They are looking to see if she has Leukemia, which is a cancer of the bone marrow.
They removed the PCA. Dr. O doesn’t want Jordan to have Morphine unless absolutely necessary. Since it’s a narcotic, it can become addictive, plus it can cause problems with her bowels.
We found out today that her bone scan shows that she has lesions all of her body. She has them on her skull, arms and legs. We already knew she had them covering her spine, hips and ribs.
Friday, February 3, 2006
Dr. Tebbi appears
We met Dr. Tebbi for the first time today. He came in, fairly early this morning to discuss the results of the CT Scan and the MRI.
He explained to us that Jordan had many lesions on her spine and one tumor pressing on her back, which is surely what has caused her all the back and leg pain. This one tumor is dangerously close to breaking through and pressing on her spinal cord. This tumor is the primary source of their concern right now because they don’t want it to press on the spinal cord and cause her paralysis.
Jordan didn’t take the news from Dr. Tebbi very well. She cried a little bit and he tried to joke with her, to lighten her mood. He made a couple of comments about the hospital room being nicer than the Hilton, certainly more expensive than the Hilton and she had a bed here that moved up and down, reclined, etc. which she couldn’t get at any Hilton. She just stared at him like he had a lot of nerve joking at a time like this.
Dr. Tebbi told us he was requesting a consult with a Neurosurgeon because of where the one tumor was located. We met Dr. Gonzales-Pitrillo this same day, he is one of the Neurosurgeon’s here at SJH. (St Joseph’s Hospital) He explained that Jordan had tumors all along her spine and on her hip bones. This set Jordan off again, because she didn’t realize that the words lesions and tumors were the same. We asked Dr. G to explain the difference and he said that sometimes they use the word “lesions” because everyone gets very anxious when they say “tumors”, but they really mean the same thing.
Dr G came into Jordan’s room and asked a bunch of the same questions, when did everything start, what has happened so far, etc. He asked Jordan to do a few things, squeeze his hands, move her feet and legs, etc.
After he left, Jordan said she thought she needed to make flash cards, because everyone asks her the same questions. It should all be in her chart but they ask again anyway. This annoys her a bit.
Jordan had a full bone scan today to see if tumors exist on other areas in her body.
Jordan also had a biopsy done on her left hip bone today (front side of body). This biopsy was of an actual tumor to help determine what is going on. They used a CT scan while doing the biopsy to be able to see precisely where to draw it from.
She was able to go back to her room after these two tests and didn’t have any others today.
Danny and Donna arrived today. We spoke with Dr. Wynn while Jordan was having her biopsy done. As of now, they suspect this could be one of four types of bone cancer. Possibilities include Ewings Sarcoma, Neuroblastoma and Osteo Sarcoma. I can never remember the fourth one, as they are focusing on Ewings based on how the tumors are presenting themselves.
At some point today, Jordan ended up with a PCA. This is a device that constantly administers Morphine and she has a button that she can press to give her an additional boost of the drug if she needs it. She was receiving 4 mg of Morphine over a 4 hour period.
He explained to us that Jordan had many lesions on her spine and one tumor pressing on her back, which is surely what has caused her all the back and leg pain. This one tumor is dangerously close to breaking through and pressing on her spinal cord. This tumor is the primary source of their concern right now because they don’t want it to press on the spinal cord and cause her paralysis.
Jordan didn’t take the news from Dr. Tebbi very well. She cried a little bit and he tried to joke with her, to lighten her mood. He made a couple of comments about the hospital room being nicer than the Hilton, certainly more expensive than the Hilton and she had a bed here that moved up and down, reclined, etc. which she couldn’t get at any Hilton. She just stared at him like he had a lot of nerve joking at a time like this.
Dr. Tebbi told us he was requesting a consult with a Neurosurgeon because of where the one tumor was located. We met Dr. Gonzales-Pitrillo this same day, he is one of the Neurosurgeon’s here at SJH. (St Joseph’s Hospital) He explained that Jordan had tumors all along her spine and on her hip bones. This set Jordan off again, because she didn’t realize that the words lesions and tumors were the same. We asked Dr. G to explain the difference and he said that sometimes they use the word “lesions” because everyone gets very anxious when they say “tumors”, but they really mean the same thing.
Dr G came into Jordan’s room and asked a bunch of the same questions, when did everything start, what has happened so far, etc. He asked Jordan to do a few things, squeeze his hands, move her feet and legs, etc.
After he left, Jordan said she thought she needed to make flash cards, because everyone asks her the same questions. It should all be in her chart but they ask again anyway. This annoys her a bit.
Jordan had a full bone scan today to see if tumors exist on other areas in her body.
Jordan also had a biopsy done on her left hip bone today (front side of body). This biopsy was of an actual tumor to help determine what is going on. They used a CT scan while doing the biopsy to be able to see precisely where to draw it from.
She was able to go back to her room after these two tests and didn’t have any others today.
Danny and Donna arrived today. We spoke with Dr. Wynn while Jordan was having her biopsy done. As of now, they suspect this could be one of four types of bone cancer. Possibilities include Ewings Sarcoma, Neuroblastoma and Osteo Sarcoma. I can never remember the fourth one, as they are focusing on Ewings based on how the tumors are presenting themselves.
At some point today, Jordan ended up with a PCA. This is a device that constantly administers Morphine and she has a button that she can press to give her an additional boost of the drug if she needs it. She was receiving 4 mg of Morphine over a 4 hour period.
Wednesday, February 1, 2006
Admitted to the hospital - St. Joseph's Children's
I called Dr. Tebbi’s office first thing in the morning and got Jordan an appointment at 1:30 pm.
Dr. Tebbi is the Director of Oncology at St. Joseph’s Children’s Hospital in Tampa, Florida.
We arrived for her appointment and Dr. Tung Wynn saw us. He explained that the MRI showed these lesions (tumors) along Jordan’s spine and that he wanted to conduct further tests. Up until this point, no one had drawn any blood on Jordan. He needed blood tests too.
Dr. Wynn admitted Jordan to the hospital that afternoon. She was put on the second floor of the main Children’s Hospital where they normally have surgery patients. There was no space on the Pediatric Oncology floor that day.
This was Jordan’s first night in the hospital. Around 11pm, they took her down stairs to Radiology for a Cat Scan (CT) and a full MRI. She had to drink two glasses of Contrast prior to the CT to light up her body for the scan. Once she got down stairs she had to drink a third glass of Contrast and also get an injection of Contrast in her IV.
The CT only took about 15 minutes and she was moved to the MRI. The MRI was very tough for her because it was a full body MRI and it took about 2 hours. She had to lie perfectly still, on her back in the MRI machine. She received another IV dose of Contrast for the MRI. They placed these two contraptions over her face and neck for the MRI. During the scan, she became very hot. This was a normal reaction to the Contrast and the MRI. The nurse told us it was like a microwave. I didn’t know what to do with that information, so I didn’t make any comment. She just told Jordan it would feel like a microwave, seemed a little insensitive, but Jordan didn’t show any reaction.
During the test, I stayed in the room almost the entire time. I stepped out for a couple of minutes to use the restroom. On my way back to the room, the nurse was looking at her computer that was doing the MRI and she said to me “how long has you daughter had cancer?” I told her that Jordan hadn’t been diagnosed with anything yet. I think she realized her slip at that point and she didn’t make any further comments about her MRI.
After the MRI was complete, Jordan was taken back to her room.
Dr. Tebbi is the Director of Oncology at St. Joseph’s Children’s Hospital in Tampa, Florida.
We arrived for her appointment and Dr. Tung Wynn saw us. He explained that the MRI showed these lesions (tumors) along Jordan’s spine and that he wanted to conduct further tests. Up until this point, no one had drawn any blood on Jordan. He needed blood tests too.
Dr. Wynn admitted Jordan to the hospital that afternoon. She was put on the second floor of the main Children’s Hospital where they normally have surgery patients. There was no space on the Pediatric Oncology floor that day.
This was Jordan’s first night in the hospital. Around 11pm, they took her down stairs to Radiology for a Cat Scan (CT) and a full MRI. She had to drink two glasses of Contrast prior to the CT to light up her body for the scan. Once she got down stairs she had to drink a third glass of Contrast and also get an injection of Contrast in her IV.
The CT only took about 15 minutes and she was moved to the MRI. The MRI was very tough for her because it was a full body MRI and it took about 2 hours. She had to lie perfectly still, on her back in the MRI machine. She received another IV dose of Contrast for the MRI. They placed these two contraptions over her face and neck for the MRI. During the scan, she became very hot. This was a normal reaction to the Contrast and the MRI. The nurse told us it was like a microwave. I didn’t know what to do with that information, so I didn’t make any comment. She just told Jordan it would feel like a microwave, seemed a little insensitive, but Jordan didn’t show any reaction.
During the test, I stayed in the room almost the entire time. I stepped out for a couple of minutes to use the restroom. On my way back to the room, the nurse was looking at her computer that was doing the MRI and she said to me “how long has you daughter had cancer?” I told her that Jordan hadn’t been diagnosed with anything yet. I think she realized her slip at that point and she didn’t make any further comments about her MRI.
After the MRI was complete, Jordan was taken back to her room.
Sudden Terror
Jordan had her first MRI on February 1, 2006. The appointment was at 10:30 a.m. By mid afternoon around 3pm, I got a call from her Pediatrician, Dr Nadal. He said the MRI showed tumors on Jordan’s spine and that I needed to immediately bring her to his office.
The phone call from Dr. Nadal was very scary, his sense of urgency really frightened me. I had let Jordan spend the rest of the day at home after the MRI because she was very tired. She hadn’t been sleeping well for the last few weeks because the pain would wake her up at night.
I rushed home and picked her up and took her to Dr. Nadal’s office. He initially told us that she would need to go see Dr. Tebbi at the Cancer Institute that night, however when we got to Dr Nadals office, we found out that Dr. Tebbi’s office closed at 4:30 and we would have to call for an appointment the next day.
The phone call from Dr. Nadal was very scary, his sense of urgency really frightened me. I had let Jordan spend the rest of the day at home after the MRI because she was very tired. She hadn’t been sleeping well for the last few weeks because the pain would wake her up at night.
I rushed home and picked her up and took her to Dr. Nadal’s office. He initially told us that she would need to go see Dr. Tebbi at the Cancer Institute that night, however when we got to Dr Nadals office, we found out that Dr. Tebbi’s office closed at 4:30 and we would have to call for an appointment the next day.
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