Dec. 25 - 26 We go to San Antonio Resort - Hyatt Hill Country. Adrian takes the girls in the pool, gets water up in nose that he says built up a tremendous pressure.
Dec. 27 Aj went to Westlake Er for sinus pain, got prescribed Cefnidir for 10 days.
Dec. 31 We had a party at home with friends, Adrian's back was hurting really bad - he had a hard time to sit down.
Now if this had something to do with the lymphoma, I don't know but that is as far as we have been back tracking.
From now on, its off road...
Jan. 20
Adrian was in Miami and called and said he started feeling pretty sick. Just in general really bad.
Jan. 21
About 2 am (in Miami) Adrian got the chills which we later got a name for RIGORS. This is a fierce way to get the body to up its temperature and create a fever. Its harsh on the body beyond means. He gets home and basically goes right to bed.
Jan. 23
Getting worse through out the day, in the evening its really bad. Rigors and fever. Temperatures goes up to 104. Very scary and we end up going to Seton ER.
They do a chest xray which shows out to be ok, his white blood cell count was low. They discharge him and we are told to follow up with an infectious disease doctor in 2-5 days.
Jan. 26
Adrian drives himself to Dr. Evans (infectious disease doctor) He was told to stop the Levequin (antibiotics) it could do more harm than good since Adrian we feeling somewhat ok. Dr. Evans said it was possibly Viral Meningitis.
Jan. 27
Symptoms came back and got worse by the hour. From the morning to the evening super bad rigors and fevers and he is in so much pain and discomfort.
Jan. 28
Bad rigors throughout the night. Early morning it seemed to get worse around 3-4 am. When I wake up to take the girls to school, he comes out in the kitchen and says he has chest pains and can't take a deep breath.
We go to Seton Central ER. They didn't waste any time to get him hooked up to IV and did a bunch of tests. EKG, CET scan, ultra sound and A LOT of blood works.
The tests show that some tissue around his heart had died. Got admitted to Seton. The cardiologist said that he was not alarmed by anything he saw, but wanted to monitor him.
Jan. 29
Hospital
Jan. 30
Stress test on heart, chest xray all came back normal. Diagnosed with myocarditis which doesn't show on the xrays.
Jan. 31
Hospital, blood tests
Feb. 1
Released as all the heart tests comes back normal. Still having rigors really bad. Dr. Bagwell comes to see us in hospital. He is an infectious disease specialist. He took blood tests and told us to come to his office next Tuesday to look at more blood.
Aj got released and came home.
Olivia's birthday party.
He got worse again in the evening and had rigors between 12pm - 5 am.
Feb. 2
Started taking tylenol & ibuprofen every four hours at the same time. No rigors during the day at all - came during night.
Feb. 3
Felt like crap. Went to Pathology center and did blood works ordered by Dr. Bagwell. High fever in the evening.
Feb. 4
Back to Dr. Bagwell. The blood test came back fine except from that the liver enzymes were high. So he told Adrian to stop taking the Tylenol completely.
Prescribed steroids (methylprednisolone) to take as a 6 days course. He should feel better the first few days and then it will wear off.
Feb. 5
Somewhat ok in the morning, 2 hour episode of rigors at 2 pm.
I have had the idea of Lyme disease and Dr Bagwell didn't feel it was necessary to do a test and that made me mad. So we went to Dr. Vik to ask if he would do a test. He could clearly tell he was very sick and said that the tests are not very accurate so he was just going to put him on the medicine anyway. Doxycycl - 2 per day for 21 days. It should clear up Lyme and a bunch of wierd things that he might have. Its a shot in the dark but worth a try.
Feb. 6
1 - 4 am rigors really bad and at 5.30 he broke out in a high fever. At 9.30 he wakes up with pain in the back of his head, its like a lump that feels like the bone and its bigger on the left hand side. Very sore to touch.
11.30 am Getting rigors again
Afternoon, we get the girls over to Moshers and then head for ER at Seton. He sees Dr. Siegefoos - internal medicine for the first time. Admitted to hospital. They say that it is strange that his fever has now been for almost three weeks and not given a break. Finally they start doing A LOT of tests.
Feb. 7
Fever chills and rigors throughout the day. Dr. Siegefoos called me early in the morning to let me know that nothing has come up on the blood works. But he says that he will keep on testing for anything that can give fever.
Infectious Disease doctor Matt Robinson came to see us. No news or ideas. thought he should get chest xray and check out Aj's heart again.
Feb. 8
Bone marrow biopsy - This is the best day as of yet. Aj got some pretty strong meds for the biopsy and is feeling great plus he had a 12 hour break from rigors. Of course the stubborn shit decides to come back in the evening and he as a bad episode.
Feb. 9
Bone marrow scan - he has to drink this fluid/dye and then wait for about 5 hours so that it goes out in the bones and then they can scan and I guess look for tumors I read somewhere. Fabby and I arrive in the afternoon with the kids and then I come back in the evening. I sleep so much better when I am next to him. Just want to make sure he is as comfortable as possible.
I ask him what they have found and he says something suspicious in the bone marrow. Not sure what it is it will take a more test.
Feb. 10
Probably the most horrible day in my whole life. I left the hospital early morning to go home and get the kids ready for school and pick up Olivia and Fabby to come back to the hospital.
We arrive and a few minutes afterwards Dr. Sigefoos walks in and says: so we need to discuss what to do next as of your treatment. Adrian tells him that he hasn't told us and Dr. S asks if he wants him to do it.
He explains that Aj has something called Hemophagoutptic Syndrome. A disease that is eating up blood cells good and bad and basically not recognizing his organs as his own. I found out later that the cure rate for this disease is about 20% (!!!) I think there was a reason for them not to share that with me right away.
Dr S, was very upfront with us and made himself available to us afterwards. He said that Aj would get a bone marrow transplant and possibly from Oliver. It would be a risk in that but he should be fine since he is young and strong. He also said that he could die from this disease.... my world fell apart....
Later on in the evening when I come back to the hospital, Adrian has spoken to Dr. Beth Helerstedt and she had sent his lab works to Houston - MD Anderson Clinic, they suggested that he had Anaplastic large cell lymphoma with hystiocytes. That is a much better diagnosis that can be cures with chemo and he just might need a transplant. So that is the better one of the two bad ones and they will reconfirm the next day.
Feb. 11
The diagnos comes back as Anaplastic large cell lymphoma with hystiocytes. Its cancer.
Wow... deep breath, I don't know if I can even say cancer and Aj in the same sentence... Never in my wildest dream would I believe that it was something as serious as this. I mean talk about kicking someone when they are down...
Aj gets moved up to 7th floor of hospital with is the Chemo floor - still can't believe this... he is scheduled to get a pick line, which is an IV that goes further in to the body. they can draw blood and do the chemo through that one.
The pick line cans stay in for months and it goes through a bigger vein. The normal IV's goes through small veins and they would not be able to hold up against chemo.
I arrive in the earlish evening and he has the pick line installed already - they have confirmed the position of it with x ray.
Dr Helerstedt comes up and talks to us for about an hour. It was information overload, or more a lot of information that makes you overwhelmed.
She tells us that he can do chemo here in Austin, its called CHOP and that the cure rate for this type of lymphoma (that of course has to be a rare one) is 70-80% with just chemo. If he does a bone marrow transplant from himself - washes his blood out and then wipes out bone marrow and replaces with his own good one, it would increase the cure rate with another 15%!! That would make it up to 85-95%!!!
He will have to go to MD Anderson at some point, for them to look at him since its a little bit of unique case.
They are not sure how the hystiocytes are going to react to the chemo or how out of hand they are just yet. The bone scan should reveal that and she hadn't seen them when she was here.
They will start chemo and then his blood cell count will go down even more and he will feel worse. it will kill both good and bad, the good ones will reproduce the bad ones will shrink. His immune system will be pretty much none so I am now worried about infections and pneumonia which could be so bad in this recovery period.
Feb. 5
Somewhat ok in the morning, 2 hour episode of rigors at 2 pm.
I have had the idea of Lyme disease and Dr Bagwell didn't feel it was necessary to do a test and that made me mad. So we went to Dr. Vik to ask if he would do a test. He could clearly tell he was very sick and said that the tests are not very accurate so he was just going to put him on the medicine anyway. Doxycycl - 2 per day for 21 days. It should clear up Lyme and a bunch of wierd things that he might have. Its a shot in the dark but worth a try.
Feb. 6
1 - 4 am rigors really bad and at 5.30 he broke out in a high fever. At 9.30 he wakes up with pain in the back of his head, its like a lump that feels like the bone and its bigger on the left hand side. Very sore to touch.
11.30 am Getting rigors again
Afternoon, we get the girls over to Moshers and then head for ER at Seton. He sees Dr. Siegefoos - internal medicine for the first time. Admitted to hospital. They say that it is strange that his fever has now been for almost three weeks and not given a break. Finally they start doing A LOT of tests.
Feb. 7
Fever chills and rigors throughout the day. Dr. Siegefoos called me early in the morning to let me know that nothing has come up on the blood works. But he says that he will keep on testing for anything that can give fever.
Infectious Disease doctor Matt Robinson came to see us. No news or ideas. thought he should get chest xray and check out Aj's heart again.
Feb. 8
Bone marrow biopsy - This is the best day as of yet. Aj got some pretty strong meds for the biopsy and is feeling great plus he had a 12 hour break from rigors. Of course the stubborn shit decides to come back in the evening and he as a bad episode.
Feb. 9
Bone marrow scan - he has to drink this fluid/dye and then wait for about 5 hours so that it goes out in the bones and then they can scan and I guess look for tumors I read somewhere. Fabby and I arrive in the afternoon with the kids and then I come back in the evening. I sleep so much better when I am next to him. Just want to make sure he is as comfortable as possible.
I ask him what they have found and he says something suspicious in the bone marrow. Not sure what it is it will take a more test.
Feb. 10
Probably the most horrible day in my whole life. I left the hospital early morning to go home and get the kids ready for school and pick up Olivia and Fabby to come back to the hospital.
We arrive and a few minutes afterwards Dr. Sigefoos walks in and says: so we need to discuss what to do next as of your treatment. Adrian tells him that he hasn't told us and Dr. S asks if he wants him to do it.
He explains that Aj has something called Hemophagoutptic Syndrome. A disease that is eating up blood cells good and bad and basically not recognizing his organs as his own. I found out later that the cure rate for this disease is about 20% (!!!) I think there was a reason for them not to share that with me right away.
Dr S, was very upfront with us and made himself available to us afterwards. He said that Aj would get a bone marrow transplant and possibly from Oliver. It would be a risk in that but he should be fine since he is young and strong. He also said that he could die from this disease.... my world fell apart....
Later on in the evening when I come back to the hospital, Adrian has spoken to Dr. Beth Helerstedt and she had sent his lab works to Houston - MD Anderson Clinic, they suggested that he had Anaplastic large cell lymphoma with hystiocytes. That is a much better diagnosis that can be cures with chemo and he just might need a transplant. So that is the better one of the two bad ones and they will reconfirm the next day.
Feb. 11
The diagnos comes back as Anaplastic large cell lymphoma with hystiocytes. Its cancer.
Wow... deep breath, I don't know if I can even say cancer and Aj in the same sentence... Never in my wildest dream would I believe that it was something as serious as this. I mean talk about kicking someone when they are down...
Aj gets moved up to 7th floor of hospital with is the Chemo floor - still can't believe this... he is scheduled to get a pick line, which is an IV that goes further in to the body. they can draw blood and do the chemo through that one.
The pick line cans stay in for months and it goes through a bigger vein. The normal IV's goes through small veins and they would not be able to hold up against chemo.
I arrive in the earlish evening and he has the pick line installed already - they have confirmed the position of it with x ray.
Dr Helerstedt comes up and talks to us for about an hour. It was information overload, or more a lot of information that makes you overwhelmed.
She tells us that he can do chemo here in Austin, its called CHOP and that the cure rate for this type of lymphoma (that of course has to be a rare one) is 70-80% with just chemo. If he does a bone marrow transplant from himself - washes his blood out and then wipes out bone marrow and replaces with his own good one, it would increase the cure rate with another 15%!! That would make it up to 85-95%!!!
He will have to go to MD Anderson at some point, for them to look at him since its a little bit of unique case.
They are not sure how the hystiocytes are going to react to the chemo or how out of hand they are just yet. The bone scan should reveal that and she hadn't seen them when she was here.
They will start chemo and then his blood cell count will go down even more and he will feel worse. it will kill both good and bad, the good ones will reproduce the bad ones will shrink. His immune system will be pretty much none so I am now worried about infections and pneumonia which could be so bad in this recovery period.
I will no longer bring the kids to the hospital and mum and dad are coming in on Sunday afternoon so they can play with them instead.
Aj will lose his hair about 2 weeks into treatment, all over his body. Other side effects are
nausea that he gets pills for, taste buds will not work properly and he will not taste food like normal.
The list is long of things and info and I will come back and update
The list is long of things and info and I will come back and update
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