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Christmas was great! Santa left lots of presents under the tree and we were so happy to spend time with family. Most importantly, Hayden was feeling well the whole time.
Now that the busy times of the holidays have passed, we'd like to thank everyone who, since November 19, have sent us their best wishes, included us in their prayers, and gone out of their way to let us know that they are with us in this battle. I couldn't possibly name everyone without missing a few - there are so many wonderful people who touched our hearts. This has been a very difficult time for us but your love and support gives us strength. Thank you all.
It's worthy to note that EISI (on their own initiative - led by Joyce) raised nearly $1700 for the cancer ward at the Children's Hospital. Amazing! You guys rock!
Saturday, December 27, 2008
Wednesday, December 24, 2008
Consolidation phase - here we come
Good news from last Friday's test - the MRD measurement was less than 1% so we're moving on to the consolidation phase of treatment. But wait, there's more....Hayden's blood counts are climbing back up so he can be with friends and family over the holidays. Since his immune system is still comprimised, the doctor advised against going to public places, like movies and malls, but Christmas dinner is on!
All in all, things are going really well. Hayden stayed infection-free since his discharge from the hospital, he's feeling good, and Santa is coming! This is the best stretch we've had since he was first diagnosed with leukemia....and it couldn't have come at a better time.
All in all, things are going really well. Hayden stayed infection-free since his discharge from the hospital, he's feeling good, and Santa is coming! This is the best stretch we've had since he was first diagnosed with leukemia....and it couldn't have come at a better time.
Friday, December 19, 2008
The induction phase ends today
Today is the 29th day of treatment - hard to believe! So now what....well that depends on the results of the tests they did today. They'll use special biochemical techniques to measure the amount of leukemia remaining in the bone marrow (minimum residual disease - MRD). This measure is 1,000 times more sensitive than looking at the bone marrow with a microscope (we've already had good results on that test). Today's test will determine the next round of treatments - low MRD means a less intensive path (i.e., fewer and less toxic treatments). This is called the consolidation phase. A high MRD means that we do a re-induction phase, which may be similar to the one we just completed.
So far, Hayden's treatments have gone very well so we are very optimistic that he'll be moving on the consolidation phase (it would start Dec. 30). Hopefully, we'll get the test results on Tuesday.
One other big development for Hayden today - he got a port put in while he was asleep for the bone marrow. It's implanted just under the skin of the chest (we call it the Iron Man port) and has a tube that goes directly to his vein. This makes is easier to draw blood for the many CBC tests Hayden gets and to administer chemo, IV fluids, antibiotics (if needed - hopefully not!), and blood and platelet transfusions.
So it was a big day....not a great one for Hayden though. Tonight, we'll play Sponge Bob video games and continue to chill at home until his blood counts come up.
So far, Hayden's treatments have gone very well so we are very optimistic that he'll be moving on the consolidation phase (it would start Dec. 30). Hopefully, we'll get the test results on Tuesday.
One other big development for Hayden today - he got a port put in while he was asleep for the bone marrow. It's implanted just under the skin of the chest (we call it the Iron Man port) and has a tube that goes directly to his vein. This makes is easier to draw blood for the many CBC tests Hayden gets and to administer chemo, IV fluids, antibiotics (if needed - hopefully not!), and blood and platelet transfusions.
So it was a big day....not a great one for Hayden though. Tonight, we'll play Sponge Bob video games and continue to chill at home until his blood counts come up.
Saturday, December 13, 2008
Hayden came home today!
Soooo nice to have all of us under the same roof! We're home.
The big thing now is to avoid any fever or infections (last time we only made it 4 days at home before being re-admitted with a staph aureus infection). Hayden's blood count it still low so we have to be so careful. Fingers crossed...
The big thing now is to avoid any fever or infections (last time we only made it 4 days at home before being re-admitted with a staph aureus infection). Hayden's blood count it still low so we have to be so careful. Fingers crossed...
Thursday, December 11, 2008
Hayden is a rapid early responder!!!
Excellent news! But what exactly does it mean?
Hayden is currently in a very intensive 29-day chemotherapy treatment plan, called the induction phase. The purpose of this first phase is to kill most of the leukemia cells in the blood and bone marrow. On Day 15, doctors take a bone marrow sample to determine if patients are rapidly responding to chemotherapy. If so, it's a good signal for children with acute lymphoblastic leukemia (ALL)...it often foretells a less intensive treatment plan after the induction phase. Yay!
Hayden's induction phase ends on Dec. 19 - that's when doctors will use more sensitive techniques to determine how many blasts (AKA: lymphoblasts; leukemic cells; bad guys) remain. This is called minimum residual disease (MRD) - it's a biggie. I'll provide more info about MRD in future posts.
BTW - everyone has lymphoblasts. Normally, blasts compose less than 5% of the cells made by the bone marrow and grow to form mature white blood cells, called lymphocytes (a type of white blood cell that fights infection). Leukemic blasts are abnormal because they remain immature, do not fight infection, and rapidly reproduce - which crowds out the good guys (normal red blood cells, white blood cells, and platelets).
Hayden is currently in a very intensive 29-day chemotherapy treatment plan, called the induction phase. The purpose of this first phase is to kill most of the leukemia cells in the blood and bone marrow. On Day 15, doctors take a bone marrow sample to determine if patients are rapidly responding to chemotherapy. If so, it's a good signal for children with acute lymphoblastic leukemia (ALL)...it often foretells a less intensive treatment plan after the induction phase. Yay!
Hayden's induction phase ends on Dec. 19 - that's when doctors will use more sensitive techniques to determine how many blasts (AKA: lymphoblasts; leukemic cells; bad guys) remain. This is called minimum residual disease (MRD) - it's a biggie. I'll provide more info about MRD in future posts.
BTW - everyone has lymphoblasts. Normally, blasts compose less than 5% of the cells made by the bone marrow and grow to form mature white blood cells, called lymphocytes (a type of white blood cell that fights infection). Leukemic blasts are abnormal because they remain immature, do not fight infection, and rapidly reproduce - which crowds out the good guys (normal red blood cells, white blood cells, and platelets).
Tuesday, December 9, 2008
A good day
Still no word about Friday’s bone marrow. We’re anxious to find out if Hayden is an RER - they’ve promised an answer tomorrow a.m.
Hayden’s had a couple of really good days. The dex is out of his system so his spirits are up and he’s now engaging in activities, like games, books, and conversation. And his mobility is greatly improved. He went from being unable to roll over in bed a few days ago to doing unassisted laps around the ward. It great to see him this way! The only pain left is tummy aches - they seem to be caused by constipation. However, now that he’s more mobile, everything moving through his system so hopefully we can clear that up too.
His hair started coming out two days ago - it’s falling in his face and all over the bed linens so he’s going to get a buzz cut - likely tomorrow.
We’re still very hopeful that H will be home for Christmas. If all goes well, he’ll be off the antibiotics (cloxicillin) by December 14 - which means no more IV pole! Assuming everything else is good, we’ll be homeward-bound. He completed his Christmas Wish List today and started his letter to Santa. He’s been a very good boy so I’m sure he’ll get a nice haul.
I promised in my last post to backtrack a bit to fill in some of the gaps, so I’ll start at the beginning with the most often-asked question: How was Hayden diagnosed with leukemia?
His most noticeable symptoms were lethargy, loss of appetite, and a mild fever. He also had a nosebleed. In his Thursday tae kwon do class, he was having trouble keeping up (not like him!). And there were other times where he would literally go flat out on the ground because he was so tired. His lunch came back from school untouched on Thursday and Friday, so we figured that a nasty flu was coming. He had a low-key weekend (that‘s when the low-grade fever started), then we called his paediatrician on Monday. Dr. Quan was out of commission (recently had surgery) so we took Hayden to the Dakota walk-in clinic, where Dr. Haggard did blood work. That surprised me because I expected that he would simply prescribe antibiotics and send us on our way. H stayed home from school on Monday and Tuesday, then on Wednesday a.m., the dr.’s office called an asked us to come in (not good). All three of us went….good thing because I can’t imagine either hearing it from my spouse or, worse yet, telling him. That moment was what I call the punch in the gut. All I really remember is Hayden saying, “Mommy, what’s leukemia?”. A crazy blur started after that….by 1:30 we were talking to Dr. Stoffman, a paediatric oncologist at the Children’s Hospital, and our worst fear was confirmed - the second punch in the gut. Hayden was admitted to the hospital that day. He was terrified that more needles would ensue (and they did) and we were doing our very best to hold it together. All three of our lives were irrevocably changed that day….and the lives of many others who love him. It’s been a short but tumultuous road since then, but we'll continue that journey in another post.
Hayden’s had a couple of really good days. The dex is out of his system so his spirits are up and he’s now engaging in activities, like games, books, and conversation. And his mobility is greatly improved. He went from being unable to roll over in bed a few days ago to doing unassisted laps around the ward. It great to see him this way! The only pain left is tummy aches - they seem to be caused by constipation. However, now that he’s more mobile, everything moving through his system so hopefully we can clear that up too.
His hair started coming out two days ago - it’s falling in his face and all over the bed linens so he’s going to get a buzz cut - likely tomorrow.
We’re still very hopeful that H will be home for Christmas. If all goes well, he’ll be off the antibiotics (cloxicillin) by December 14 - which means no more IV pole! Assuming everything else is good, we’ll be homeward-bound. He completed his Christmas Wish List today and started his letter to Santa. He’s been a very good boy so I’m sure he’ll get a nice haul.
I promised in my last post to backtrack a bit to fill in some of the gaps, so I’ll start at the beginning with the most often-asked question: How was Hayden diagnosed with leukemia?
His most noticeable symptoms were lethargy, loss of appetite, and a mild fever. He also had a nosebleed. In his Thursday tae kwon do class, he was having trouble keeping up (not like him!). And there were other times where he would literally go flat out on the ground because he was so tired. His lunch came back from school untouched on Thursday and Friday, so we figured that a nasty flu was coming. He had a low-key weekend (that‘s when the low-grade fever started), then we called his paediatrician on Monday. Dr. Quan was out of commission (recently had surgery) so we took Hayden to the Dakota walk-in clinic, where Dr. Haggard did blood work. That surprised me because I expected that he would simply prescribe antibiotics and send us on our way. H stayed home from school on Monday and Tuesday, then on Wednesday a.m., the dr.’s office called an asked us to come in (not good). All three of us went….good thing because I can’t imagine either hearing it from my spouse or, worse yet, telling him. That moment was what I call the punch in the gut. All I really remember is Hayden saying, “Mommy, what’s leukemia?”. A crazy blur started after that….by 1:30 we were talking to Dr. Stoffman, a paediatric oncologist at the Children’s Hospital, and our worst fear was confirmed - the second punch in the gut. Hayden was admitted to the hospital that day. He was terrified that more needles would ensue (and they did) and we were doing our very best to hold it together. All three of our lives were irrevocably changed that day….and the lives of many others who love him. It’s been a short but tumultuous road since then, but we'll continue that journey in another post.
Friday, December 5, 2008
Welcome!
Since Hayden was diagnosed with leukemia on Nov. 19, so many people have reached out to offer support and encouragement. We’re very grateful and take a lot of comfort in this. We’ll try to post regular updates here about Hayden’s progress so that everyone can participate in his battle.
So much has happened in such a short time. Rather than trying to start from the beginning, I’ll let you know where we’re at today, then later backtrack to fill in some of the gaps. After a rough night of tummy aches, Hayden is peacefully sleeping now. It’s a good thing because his 3rd bone marrow aspiration is at 2:00 so he can’t eat or drink. This is how we find out if Hayden’s a Rapid Early Responder (RER) - as you might have guessed, this would be a good thing. He’s also getting a PICC line, which means fewer pokes for IV’s and blood tests (hopefully this line will last for 6 months or so). He’ll be put under for theses procedures.
Today also marks the end of the 14-day run of dexamethasone (dex) and we won’t miss it. Hayden’s side-effects of this steroid include nasty tempers, severe muscle aches, and food binges….yikes. It will take a few days to totally clear his system….we’re sooooo looking forward to getting our little boy back.
So much has happened in such a short time. Rather than trying to start from the beginning, I’ll let you know where we’re at today, then later backtrack to fill in some of the gaps. After a rough night of tummy aches, Hayden is peacefully sleeping now. It’s a good thing because his 3rd bone marrow aspiration is at 2:00 so he can’t eat or drink. This is how we find out if Hayden’s a Rapid Early Responder (RER) - as you might have guessed, this would be a good thing. He’s also getting a PICC line, which means fewer pokes for IV’s and blood tests (hopefully this line will last for 6 months or so). He’ll be put under for theses procedures.
Today also marks the end of the 14-day run of dexamethasone (dex) and we won’t miss it. Hayden’s side-effects of this steroid include nasty tempers, severe muscle aches, and food binges….yikes. It will take a few days to totally clear his system….we’re sooooo looking forward to getting our little boy back.
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