Talked to Mati (Bone Marrow Transplant Coordinator) today and found out they have activated 4 searches. This means that 4 people potentially match Jordan’s bone marrow. One of the four has already scheduled to come in on April 4th to have more blood drawn for further testing. The blood will be fed exed to Mati that same day, so she will receive it on April 5th. The test results won’t be back until the 11th or 12th.
Mati also mentioned they reserved a second cord unit for Jordan.
Friday, March 31, 2006
Tuesday, March 28, 2006
Chemo - Round two
March 21 - 28, 2006
Jordan had her second set of chemo this week. It was an 8 day protocol and she handled it very well. She was a bit nauseous, but otherwise fine. To our relief, we went home on the 28th as planned, without a fever spiking this time.
Jordan had her second set of chemo this week. It was an 8 day protocol and she handled it very well. She was a bit nauseous, but otherwise fine. To our relief, we went home on the 28th as planned, without a fever spiking this time.
Tuesday, March 14, 2006
Frist trip to All Children's
Today was a busy day. We had a meeting at All Children’s Hospital in St. Petersburg. This is the hospital that will do the Bone Marrow Transplant. We met Mati, who will be Jordan’s transplant coordinator, Dr. Petrovic, and Bethany the Nurse Practitioner. We had a long meeting with this group to get a general first understanding of how a BMT happens. Jordan has to be in remission for 4 weeks prior to the BMT. She will be in the hospital for a minimum of 6 weeks and will have to undergo a High Dose Chemotherapy session that usually lasts about 8 days. At this time her body will be extremely sensitive to infection. The hospital rooms are high tech and don’t allow any outside air into the room and all items brought to the room have to be cleaned before they can be brought in. They have to be cleaned right outside of the room, by one of the people that work on the floor. We were given so much other information, it still needs time to be re-read and absorbed. I’m sure we will have many questions after it settles in a little bit.
They told us they have not yet found an unrelated adult donor, however they found a Cord Blood Unit that looks like a potential match and it has enough cells. She’s lucky she is short and only weighs a bit over 100 pounds. Cord cells are not usually used on teenagers or adults because there aren’t normally enough cells in the unit to supply someone’s body weight. This particular donor has over 3 million cells and Jordan needs 3 million for her body weight. We are crossing our fingers that this cord unit will work. Dr. Petrovic likes to have two cord units, one as a back up, just in case. They have reserved this Cord Unit for her and will continue to look for other donors until she is ready for transplant.
After the visit at ACH, we had to go to Jordan’s hospital (SJH) to have labs done. She hadn’t had labs since she went home on Sunday, so we needed to find out if she needed platelets.
Our biggest news of the day was that Jordan is actually in remission. The test from the bone marrow aspiration from last Wednesday was negative for Leukemia cells. The results on the Philadelphia Chromosome are not back yet. She technically has to be in remission for both the Leukemia and the Philly Chromosome to be in complete remission.
Her labs came back and her platelets were 60. We were so surprised. They have to be greater than 75 to start chemo again. They set up an appointment to come back Friday morning for labs one more time. They expect them to be higher than 75 on Friday and they have already scheduled her for her second set of Chemo to start next Monday, March 20th. This next session will last 8 days and the only new drug that will be added is Gleevec. Gleevec is a fairly new drug that specifically targets the Philadelphia Chromosome. We are excited about this drug because we have been told by several doctors that it has revolutionized the treatment of Cancer in this situation.
This next set of Chemo is not the 8 days session before transplant. They now have to keep doing Chemo to keep her in remission until she goes to transplant. She cannot have the BMT until she is in remission for 4 weeks and has a suitable donor.
They told us they have not yet found an unrelated adult donor, however they found a Cord Blood Unit that looks like a potential match and it has enough cells. She’s lucky she is short and only weighs a bit over 100 pounds. Cord cells are not usually used on teenagers or adults because there aren’t normally enough cells in the unit to supply someone’s body weight. This particular donor has over 3 million cells and Jordan needs 3 million for her body weight. We are crossing our fingers that this cord unit will work. Dr. Petrovic likes to have two cord units, one as a back up, just in case. They have reserved this Cord Unit for her and will continue to look for other donors until she is ready for transplant.
After the visit at ACH, we had to go to Jordan’s hospital (SJH) to have labs done. She hadn’t had labs since she went home on Sunday, so we needed to find out if she needed platelets.
Our biggest news of the day was that Jordan is actually in remission. The test from the bone marrow aspiration from last Wednesday was negative for Leukemia cells. The results on the Philadelphia Chromosome are not back yet. She technically has to be in remission for both the Leukemia and the Philly Chromosome to be in complete remission.
Her labs came back and her platelets were 60. We were so surprised. They have to be greater than 75 to start chemo again. They set up an appointment to come back Friday morning for labs one more time. They expect them to be higher than 75 on Friday and they have already scheduled her for her second set of Chemo to start next Monday, March 20th. This next session will last 8 days and the only new drug that will be added is Gleevec. Gleevec is a fairly new drug that specifically targets the Philadelphia Chromosome. We are excited about this drug because we have been told by several doctors that it has revolutionized the treatment of Cancer in this situation.
This next set of Chemo is not the 8 days session before transplant. They now have to keep doing Chemo to keep her in remission until she goes to transplant. She cannot have the BMT until she is in remission for 4 weeks and has a suitable donor.
Sunday, March 12, 2006
Discharged
48 hours later, she was discharged to go home. It was an uneventful hospital stay, they did blood cultures, which is normal protocol if they are admitted for fever. Her blood cultures came back negative and she didn’t run another fever since Friday, so she was free to go home. She has to go back on Tuesday to clinic to check her labs again to see if she needs more platelets.
Friday, March 10, 2006
Fever again
She had a clinic appointment today. She has to go back to the hospital and have blood drawn for her labs. For the past couple of weeks she has needed platelet transfusions nearly every other day. When her platelets drop below 20, she requires a transfusion. Her labs came back and she needed platelets, so she stayed at the Clinic for the transfusion. During this time, she spiked a fever of 101.7, so they admitted her back into the hospital for a mandatory 48 hours. She was not at all happy, considering she only just got out of the hospital on Wednesday.
Wednesday, March 8, 2006
Home finally after 35 days
Week of Feb 29 - March 8
Not too much to report during this time. Jordan continued to struggle with fevers and ended up on three different antibiotics that finally corrected the problem. On Sunday, March 5th, she got a day pass and went home for about 5 hours. This was a nice break for her, she really needed it. She continued to improve over the next couple of days and finally got discharged to go home (after 35 nights in the hospital) on March 8th. Discharge instructions are specific. If you run a fever of 100.5 or higher you get readmitted. This is a tall order, as in anyone else we would not consider this a fever at all. But when your ANC is low and you don’t have any white blood cells to fight infection, it becomes critical and should not be taken lightly. The doctors are most concerned about her becoming Septic. Sepsis is some kind of bacteria in your blood that attacks your internal organs, and its deadly most of the time. By coincidence my company deals with a lady from another company and her healthy 12 year old daughter collapsed at school this week and was taken by air to All Children’s Hospital where she was diagnosed with Sepsis. She only lived 24 hours.
Jordan had a bone marrow biopsy done today to check and see if she is in remission. We should get the results back early next week. Dr. Rossbach did the procedure and said it was a quick draw, which normally indicates the bone marrow is healthy. When the bone marrow is full of Leukemia, it is difficult to pull it from the bone because it sticks. Since her bone marrow came out so easily, he is fairly certain she might be in remission.
After Dr. Rossbach did the procedure, he talked with Danny and me to let us know that they have changed Jordan’s diagnosis. She actually has CML instead of AML. (Chronic instead of Acute) They feel they caught it during a Blast Crisis Phase and say the original diagnosis of AML was because it was masking itself due to the blast crisis. The reason they are sure it is CML instead of AML is because she has the long Philadelphia Chromosome instead of the short one. There are no known cases of anyone having the Long Philadelphia Chromosome with AML, it is always associated with CML. Her treatment doesn’t change, but the fact that she needs to have a Bone Marrow Transplant is no longer an option, it is the only way she can survive CML. I also found out that I am not a match for her bone marrow, which means we now have to look for an unrelated donor. This can be people who are actually related, but are labeled as unrelated because they are not a parent or sibling to the patient.
We did find out that Blood Type doesn’t matter in being a Bone Marrow Donor. This opens up the possibilities even further, but matches are harder once you have a different ethnic background. There is less donor pool to find a match.
CML has three phases, the Chronic Phase, the Acute Phase and the Blast Crisis Phase. The Blast Crisis Phase is the most severe phase.
Jordan case is now reported. Her doctors cannot find any other doctor in the nation that has had a case like hers. Her entire presentation with back pain to this point is unique.
We got home tonight (March 8th) and Jordan was still a bit nervous but she did okay, until she took her temperature and it was 100.7 She had just woken up, so I asked her to unwrap herself from her blanket and sit in the family room where it was cooler. Her temp immediately dropped back down under 100. I think she was just warm from sleeping and being bundled up. I must have gotten up and checked on her 4 or 5 times that night to make sure she wasn’t actually running a fever. Thankfully she was not.
Not too much to report during this time. Jordan continued to struggle with fevers and ended up on three different antibiotics that finally corrected the problem. On Sunday, March 5th, she got a day pass and went home for about 5 hours. This was a nice break for her, she really needed it. She continued to improve over the next couple of days and finally got discharged to go home (after 35 nights in the hospital) on March 8th. Discharge instructions are specific. If you run a fever of 100.5 or higher you get readmitted. This is a tall order, as in anyone else we would not consider this a fever at all. But when your ANC is low and you don’t have any white blood cells to fight infection, it becomes critical and should not be taken lightly. The doctors are most concerned about her becoming Septic. Sepsis is some kind of bacteria in your blood that attacks your internal organs, and its deadly most of the time. By coincidence my company deals with a lady from another company and her healthy 12 year old daughter collapsed at school this week and was taken by air to All Children’s Hospital where she was diagnosed with Sepsis. She only lived 24 hours.
Jordan had a bone marrow biopsy done today to check and see if she is in remission. We should get the results back early next week. Dr. Rossbach did the procedure and said it was a quick draw, which normally indicates the bone marrow is healthy. When the bone marrow is full of Leukemia, it is difficult to pull it from the bone because it sticks. Since her bone marrow came out so easily, he is fairly certain she might be in remission.
After Dr. Rossbach did the procedure, he talked with Danny and me to let us know that they have changed Jordan’s diagnosis. She actually has CML instead of AML. (Chronic instead of Acute) They feel they caught it during a Blast Crisis Phase and say the original diagnosis of AML was because it was masking itself due to the blast crisis. The reason they are sure it is CML instead of AML is because she has the long Philadelphia Chromosome instead of the short one. There are no known cases of anyone having the Long Philadelphia Chromosome with AML, it is always associated with CML. Her treatment doesn’t change, but the fact that she needs to have a Bone Marrow Transplant is no longer an option, it is the only way she can survive CML. I also found out that I am not a match for her bone marrow, which means we now have to look for an unrelated donor. This can be people who are actually related, but are labeled as unrelated because they are not a parent or sibling to the patient.
We did find out that Blood Type doesn’t matter in being a Bone Marrow Donor. This opens up the possibilities even further, but matches are harder once you have a different ethnic background. There is less donor pool to find a match.
CML has three phases, the Chronic Phase, the Acute Phase and the Blast Crisis Phase. The Blast Crisis Phase is the most severe phase.
Jordan case is now reported. Her doctors cannot find any other doctor in the nation that has had a case like hers. Her entire presentation with back pain to this point is unique.
We got home tonight (March 8th) and Jordan was still a bit nervous but she did okay, until she took her temperature and it was 100.7 She had just woken up, so I asked her to unwrap herself from her blanket and sit in the family room where it was cooler. Her temp immediately dropped back down under 100. I think she was just warm from sleeping and being bundled up. I must have gotten up and checked on her 4 or 5 times that night to make sure she wasn’t actually running a fever. Thankfully she was not.
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