Normal = Life before cancer
New Normal = Life fighting T-Cell Lymphoma
New, New Normal = Life after Lymphoma
New, New, New Normal = Life fighting B-Cell Leukemia
New, New, New, New Normal = Our life now ... beyond cancer!
I know that posts have been few and far between. I guess our new x 4 normal (n4normal), is taking up all our time, as we find our balance.
Alex is now in school full days, with only a few adjustment issues. Once in a while, he will have an anxiety attack, but we are having more and more regular days. We had his first teacher conference, and were very pleased with his progress. He is learning so much, and we haven't seen any signs of possible cognitive issues, although, they could show up much later, so we will keep watching for anything.
We also made it through our first head cold with Alex. He got a fever, and were relieved when the on-call doctor told us to just give him Tylenol. No emergency room visit, no IV's, no overnight stays in the hospital. What has been truly amazing, is that Alex got over the fever, and cold faster than any of us. As one of his doctors say, he has a very robust immune system!
Alex only takes two medications now. The Acyclovir twice a day(anti-viral), and Septra twice a day on the weekends. Both of those medications are due to stop in September. He doesn't have any rashes, and only a bit of gastro-intestinal issues, which could just be from recovering from this cold. He looks so good, and you would never know he had been so sick, unless you saw 5 *war wound* scars that slash across his body.
We just had another clinic visit today. We are on a two-week schedule, soon to be once a month. His counts are perfect, and his blood work is beautiful. The whole clinic is just so pleased with his results. As are we.
This has been such a long road. It is hard sometimes to realize that we are at the end of treatment, and are moving into survivorship. Alex is amazing - and I can't wait to see what he will be when he grows up. But, for now, I am glad he just gets to be a kid.
Wednesday, March 28, 2012
Thursday, February 2, 2012
I Can See Clearly Now ... (Day +142)
... the rain is gone.
I can see all obstacles in my way.
Gone are the dark clouds that had me blind
It's gonna be a bright, bright, bright sun shiny day ...
That is the song that has been running through my head for two days now. At Alex's last clinic appointment, the doctors released him from his low bacteria diet, confirmed his appointment to remove his Hickman line, and approved February 13th as Alex's first day back at school!
We went out to dinner to celebrate, and Alex's request? Sweet Tomatoes (a salad bar restaurant). While I must say, that my "germ radar" was on high alert, we made it through dinner, and really enjoyed ourselves! It may seem like such a small thing to most, but for Alex to have drinks from a fountain dispenser, and soft-serve ice cream is huge.
This news all hit exactly 9 months from the date of Alex's diagnosis of B-cell Leukemia. Since then, we have been to hell and back. I am just in awe that this stage is just about over, that life CAN go on.
I cannot give enough credit to Alex's team of doctors and researchers for working aggressively to kill this second cancer
I also send my heart-felt and most sincere thanks to the woman who donated her marrow so that Alex could have a chance to be the amazing man I know he will be! I hope to meet this amazing lady someday, although, how do you properly say "thank you" for saving Alex's life?
It is very fitting, that the sun is shinning in the middle of winter in the Northwest today.
Look all around, there is nothing but blue skies.
Look straight ahead there's nothing but blue skies ...
I can see all obstacles in my way.
Gone are the dark clouds that had me blind
It's gonna be a bright, bright, bright sun shiny day ...
That is the song that has been running through my head for two days now. At Alex's last clinic appointment, the doctors released him from his low bacteria diet, confirmed his appointment to remove his Hickman line, and approved February 13th as Alex's first day back at school!
We went out to dinner to celebrate, and Alex's request? Sweet Tomatoes (a salad bar restaurant). While I must say, that my "germ radar" was on high alert, we made it through dinner, and really enjoyed ourselves! It may seem like such a small thing to most, but for Alex to have drinks from a fountain dispenser, and soft-serve ice cream is huge.
This news all hit exactly 9 months from the date of Alex's diagnosis of B-cell Leukemia. Since then, we have been to hell and back. I am just in awe that this stage is just about over, that life CAN go on.
I cannot give enough credit to Alex's team of doctors and researchers for working aggressively to kill this second cancer
I also send my heart-felt and most sincere thanks to the woman who donated her marrow so that Alex could have a chance to be the amazing man I know he will be! I hope to meet this amazing lady someday, although, how do you properly say "thank you" for saving Alex's life?
It is very fitting, that the sun is shinning in the middle of winter in the Northwest today.
Look all around, there is nothing but blue skies.
Look straight ahead there's nothing but blue skies ...
Wednesday, January 18, 2012
The Light Is Getting Brighter (Day +127)
We had another great clinic visit today! Alex's counts were where they expected them to be, AND the doctors have contacted surgery to remove his Hickman line! In a few weeks, he will have those pesky tubes removed from his body, and another potential source of infection will be removed from the equation.
The doctors gave us a taper schedule for Alex's Tacrolimus, and said that as soon as the Hickman is out, and he is on the next taper down (starting next week), he can GO BACK TO SCHOOL!!!!
Wow, just wow - this is amazing news. Alex is excited and nervous about re-entry into school, as are his parents. This road has been so tough, and the isolation so hard, that the thought that we may be coming to the end of this treatment is surreal.
We were still on a "high" from the Leukemia and Lymphoma Society "Mini Light the Night Walk" that was so generously put together for Alex the night before (pictures, and a separate post to follow tomorrow). So, this news was just the icing on the cake!
My heart is so full right now - my hope for a full recovery for our amazing warrior has not been this high in quite a while. I see the light at the end of the tunnel, and it is getting brighter!
The doctors gave us a taper schedule for Alex's Tacrolimus, and said that as soon as the Hickman is out, and he is on the next taper down (starting next week), he can GO BACK TO SCHOOL!!!!
Wow, just wow - this is amazing news. Alex is excited and nervous about re-entry into school, as are his parents. This road has been so tough, and the isolation so hard, that the thought that we may be coming to the end of this treatment is surreal.
We were still on a "high" from the Leukemia and Lymphoma Society "Mini Light the Night Walk" that was so generously put together for Alex the night before (pictures, and a separate post to follow tomorrow). So, this news was just the icing on the cake!
My heart is so full right now - my hope for a full recovery for our amazing warrior has not been this high in quite a while. I see the light at the end of the tunnel, and it is getting brighter!
Tuesday, January 10, 2012
Great Progress - Day +119
We had a great visit at the clinic today. Alex's results from his bone marrow aspiration and blood draws all show no evidence of leukemic cells, and over 98% donor cells!!!
This is tremendous - it is fantastic! Alex has made it past 100 days without having to be hospitalized. He has made it past day 100 without needing an antibody transfusion. Both of those things are almost a given with transplant patients.
Alex is strong. His energy level is great. He is eating normally. Now, if I can only get him to drink more (ugh).
The doctors are very happy with his progress, and are even talking about taking out his Hickman line in a few weeks! The benefits of having it (easy blood draws and iv hookup), are reducing compared to the risk of leaving it in (point of possible infection). Alex was such a trooper about getting poked in the arm for blood draws after he completed his lymphoma treatment. I know he would do just fine this time too. Plus, the phlebotomists at Doerenbecher are amazing and so quick; they make things as painless as possible.
The doctors are continuing to reduce his Tacrolimus level (the anti-rejection medication), and consequently, we are able to start reducing the number of magnesium horse pills taken each day as well! His Septra (preventative for a specific pneumonia strain) will continue on the weekends until 3 months after we stop the Tacrolimus. The Acyclovir (preventative anti-viral) will continue until one year post tarnasplant.
If Alex tolerates this reduction in his Tacrolimus level and continues on the path he is on right now, he may be able to go back to school in March! He has been doing really well with his tutor here at the house. While I know the transition back to the classroom will be emotionally difficult (shyness); his academic skills will place him on track with his peers.
His hair is really growing back quickly, and any puffiness left from treatment is gone. He continues to grow taller by the minute, and I am just stunned that we will be celebrating his seventh birthday in April.
I know Alex is going to make a full recovery, and with few long term side effects. He is an amazing Warrior, and I am so proud of him!
This is tremendous - it is fantastic! Alex has made it past 100 days without having to be hospitalized. He has made it past day 100 without needing an antibody transfusion. Both of those things are almost a given with transplant patients.
Alex is strong. His energy level is great. He is eating normally. Now, if I can only get him to drink more (ugh).
The doctors are very happy with his progress, and are even talking about taking out his Hickman line in a few weeks! The benefits of having it (easy blood draws and iv hookup), are reducing compared to the risk of leaving it in (point of possible infection). Alex was such a trooper about getting poked in the arm for blood draws after he completed his lymphoma treatment. I know he would do just fine this time too. Plus, the phlebotomists at Doerenbecher are amazing and so quick; they make things as painless as possible.
The doctors are continuing to reduce his Tacrolimus level (the anti-rejection medication), and consequently, we are able to start reducing the number of magnesium horse pills taken each day as well! His Septra (preventative for a specific pneumonia strain) will continue on the weekends until 3 months after we stop the Tacrolimus. The Acyclovir (preventative anti-viral) will continue until one year post tarnasplant.
If Alex tolerates this reduction in his Tacrolimus level and continues on the path he is on right now, he may be able to go back to school in March! He has been doing really well with his tutor here at the house. While I know the transition back to the classroom will be emotionally difficult (shyness); his academic skills will place him on track with his peers.
His hair is really growing back quickly, and any puffiness left from treatment is gone. He continues to grow taller by the minute, and I am just stunned that we will be celebrating his seventh birthday in April.
I know Alex is going to make a full recovery, and with few long term side effects. He is an amazing Warrior, and I am so proud of him!
Thursday, December 22, 2011
Day +100
Today is day +100. I'm not sure why, but I expected fireworks, marching bands, waves of relief, joy without end ... you get the picture. Well, day +100 was just like any other day. Alex woke up, had his medicine, I nagged him about drinking enough water all day - which he didn't; then he took his medicine again and went to bed.
Alex is off most of his medication. There are three he takes during the week, with a fourth one just on the weekends.
Tacrolimus: We tried to ween him down on this one two weeks ago. He started flaring up with a good-sized Graft-vs-Host Disease rash (GVHD), so we adjusted the levels. Until he is off this medication, he can't go back to school, or be in big crowds. It was disappointing that the first taper did not work, but we just need to be more patient. We will continue to tweak the dosage until his new immune system can tolerate the new body.
Acyclovir: This medication is given for about a year, so we have at least 250 more days of it twice a day. It is an anti-viral medication, all the other "anti" medications are completed (i.e. antibiotic, anti-fungal)
Magnesium: As long as Alex is on Tacrolimus, he will be on a Magnesium supplement (4 *huge* tablets twice a day).
Septra: This antibiotic is given as a preventative measure for a specific type of pneumonia that is common among patients with compromised immune systems. He will be on this medication for at least another six months.
The last Chimera test came back with good results. The lab tests two cell lines in the blood. The first cell line was 100% donor cells (yay!) The second cell line was at 94% donor cells. This is down slightly from last month. The doctors are going to try to see if Alex can tolerate a little bit of GVHD, so that the donor immune system can wipe out the last 6% of his original cells. This is quite common, and nothing to get to concerned over. A bone marrow aspiration was done on last Tuesday to check for leukemic cells in his marrow. The doctors don't expect to find any, and we won't know for sure until next week. The waiting is so hard.
Alex likes to say that there is a battle going on in his body. It is a good analogy. For all of you Doctor Who fans out there, Alex likes to picture himself "regenerating", which to me is the best analogy.
What day +100 really means, is that the likelihood of major complications statistically drops significantly for patients who make it this far after transplant. I am so happy to be at this point however, one thing that has become crystal clear to me is that statistics are just numbers, and we aren't guaranteed success.
I have had nightmares, of Alex just dropping dead as we walked through a store. These nightmares are awful - I wake up in tears, and go and give my boy a big hug. I have dreams where Alex's birth-mother tells me "why didn't you keep him safe?". I want this to be over. I want to be done. I want the Hickman line in his chest removed. I want his body to work so he can enjoy his life - without the cloud of cancer. Is that too much to ask?
Alex is off most of his medication. There are three he takes during the week, with a fourth one just on the weekends.
Tacrolimus: We tried to ween him down on this one two weeks ago. He started flaring up with a good-sized Graft-vs-Host Disease rash (GVHD), so we adjusted the levels. Until he is off this medication, he can't go back to school, or be in big crowds. It was disappointing that the first taper did not work, but we just need to be more patient. We will continue to tweak the dosage until his new immune system can tolerate the new body.
Acyclovir: This medication is given for about a year, so we have at least 250 more days of it twice a day. It is an anti-viral medication, all the other "anti" medications are completed (i.e. antibiotic, anti-fungal)
Magnesium: As long as Alex is on Tacrolimus, he will be on a Magnesium supplement (4 *huge* tablets twice a day).
Septra: This antibiotic is given as a preventative measure for a specific type of pneumonia that is common among patients with compromised immune systems. He will be on this medication for at least another six months.
The last Chimera test came back with good results. The lab tests two cell lines in the blood. The first cell line was 100% donor cells (yay!) The second cell line was at 94% donor cells. This is down slightly from last month. The doctors are going to try to see if Alex can tolerate a little bit of GVHD, so that the donor immune system can wipe out the last 6% of his original cells. This is quite common, and nothing to get to concerned over. A bone marrow aspiration was done on last Tuesday to check for leukemic cells in his marrow. The doctors don't expect to find any, and we won't know for sure until next week. The waiting is so hard.
Alex likes to say that there is a battle going on in his body. It is a good analogy. For all of you Doctor Who fans out there, Alex likes to picture himself "regenerating", which to me is the best analogy.
Alex - Regenerating
What day +100 really means, is that the likelihood of major complications statistically drops significantly for patients who make it this far after transplant. I am so happy to be at this point however, one thing that has become crystal clear to me is that statistics are just numbers, and we aren't guaranteed success.
I have had nightmares, of Alex just dropping dead as we walked through a store. These nightmares are awful - I wake up in tears, and go and give my boy a big hug. I have dreams where Alex's birth-mother tells me "why didn't you keep him safe?". I want this to be over. I want to be done. I want the Hickman line in his chest removed. I want his body to work so he can enjoy his life - without the cloud of cancer. Is that too much to ask?
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