A bunch of you have asked us if we have a "donation" account set up, where people could donate money to help pay Alex's medical bills. At first, we thought, "we don't need that, we have insurance", but now we realize that the co-pays, deductibles, and a possible lifetime cap, could really add up quick. We are just getting our heads wrapped around what our insurance will provide us. So, we contacted our bank, and they are in the process of setting up a "donation account" nationwide for people to help us. I will update the blog with the info as soon as we have it available.
Here are some other ways that you can help:
While donations to these organizations doesn't go directly to Alex, it will help these groups help families like us:
Children's Cancer Association (CCA)
http://www.childrenscancerassociation.org/
American Cancer Society (ACS)
http://www.cancer.org/
Doerenbecher Charitable Foundation (DCF)
http://www.ohsu.edu/xd/about/dchf/
Leukemia & Lymphoma Society (LLS)
http://www.leukemia-lymphoma.org/hm_lls
Candlelighters Childhood Cancer Foundation
http://www.candlelighters.org/
Alex will be receiving blood and platelet transfusions from the blood supply of the American Red Cross. Please consider donating blood in Alex's honor here: http://www.givelife.org/.
While Alex won't need a bone marrow transplant, a lot of kids with cancer do. If you are interested in getting your bone marrow tested, and adding your name to the bone marrow donor bank, you can do so here: http://www.marrow.org/.
I also encourage *all* of our friends and family who are pregnant, or who are planing on becoming pregnant to talk to their doctors about cord blood and either donating it, or storing it for your child. You can find out more about this amazing option here:
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
Sunday, November 30, 2008
A return to "normal"
Yesterday, Alex returned to his more "normal" self. While he is still more tired than he used to be, his funny personality returned.
He was bowling and golfing with some of his Grandparents (on his new Wii game system, given to us by our wonderful neighbors), and laughing. While we have to struggle to get the medication in him, he is slowly "giving in" to the fact that we have to do it.
He is so strong - he helps us flush his PICC line, and talks about how sometimes the icky medicine makes him "spit up", but not other times...
My Grandmother told me recently that it is easier for the person in the hospital, than it is for their family and friends. In this case, I definitely agree. Alex is rolling with the punches. He doesn't always like it, but "it's just life", and "these things happen". Eric and I, and all of you have to deal with the reality of what is happening, and our concern for him is filtered through our life experience. We can't look at this cancer, without reviewing our own experiences with this terrible disease, and coloring our outlook on it. We all know someone who has had cancer, or has had a family or friend fight it. Some of those experiences were positive, some had very sad outcomes.
I am trying to look at Alex's cancer as it's own experience, without looking through a filter. He is a strong young boy, who has been diagnosed with a cancer very rarely found in children. The good news is that it is a very curable cancer (approx 80% first treatment cure rate), and we'll beat it - there is no other option.
Today we did "normal" things: We put up our Christmas lights on the house, and put "Frank" on the roof (for those who don't know us, we have a life-sized dummy that we put in precarious positions on our house each year, trying to hang up our Christmas lights - I'll have to post a picture...). We watched a movie, and did "nap time" too.
Tessa-Lynn is running a slight fever today, and is spitting up a lot. Here is our first test of how well we can keep Alex from getting a cold. We will be doing lots, and lots of hand washing, and not letting Alex "hug" his sister, which he just loves to do!
I hope everyone had a great Thanksgiving - we sure enjoyed having so much family around!
He was bowling and golfing with some of his Grandparents (on his new Wii game system, given to us by our wonderful neighbors), and laughing. While we have to struggle to get the medication in him, he is slowly "giving in" to the fact that we have to do it.
He is so strong - he helps us flush his PICC line, and talks about how sometimes the icky medicine makes him "spit up", but not other times...
My Grandmother told me recently that it is easier for the person in the hospital, than it is for their family and friends. In this case, I definitely agree. Alex is rolling with the punches. He doesn't always like it, but "it's just life", and "these things happen". Eric and I, and all of you have to deal with the reality of what is happening, and our concern for him is filtered through our life experience. We can't look at this cancer, without reviewing our own experiences with this terrible disease, and coloring our outlook on it. We all know someone who has had cancer, or has had a family or friend fight it. Some of those experiences were positive, some had very sad outcomes.
I am trying to look at Alex's cancer as it's own experience, without looking through a filter. He is a strong young boy, who has been diagnosed with a cancer very rarely found in children. The good news is that it is a very curable cancer (approx 80% first treatment cure rate), and we'll beat it - there is no other option.
Today we did "normal" things: We put up our Christmas lights on the house, and put "Frank" on the roof (for those who don't know us, we have a life-sized dummy that we put in precarious positions on our house each year, trying to hang up our Christmas lights - I'll have to post a picture...). We watched a movie, and did "nap time" too.
Tessa-Lynn is running a slight fever today, and is spitting up a lot. Here is our first test of how well we can keep Alex from getting a cold. We will be doing lots, and lots of hand washing, and not letting Alex "hug" his sister, which he just loves to do!
I hope everyone had a great Thanksgiving - we sure enjoyed having so much family around!
Saturday, November 29, 2008
Rare Cancer
Alex's Grammie Gale gave us a book on Non-Hodgkins Lymphomas (NHL), and according to this book, only 800 children per year are diagnosed with NHL's in the United States, and Lymphoblastic Lymphoma is just one of many sub-types of NHL - boy, aren't we lucky (insert sarcasm here)
We had a bad night last night - Alex was really nauseous from the Vincristine and Duanorubicin, and ended up throwing up all over the hallway last night. He woke up complaining that his stomach hurt four times. I ended up sleeping with him in his little bed for half the night. Then, Tessa-Lynn woke up with all of the commotion. We tried giving Alex some Benadryl for nausea, and that didn't work, and we couldn't give him another dose of Zofran until noon today.
He's much more lethargic than normal - and this kid is always a bundle of energy. He's exhausted, and so are we - and we still have almost 2 years to go.
I got a statement from the hospital listing the services received, and what they billed our insurance. For the period of 11/11 - 11/17, the bill was over $49,000 - of that, almost $16,000 was pharmaceuticals. This statement doesn't even cover the cost of the doctors...I don't know how anyone can go through this without health insurance. Hopefully, our insurance will pay for most of this, but to be honest, we are still trying to figure out what they will or won't pay for, and what, if any, the lifetime cap is. At this rate, we'll blow past one million dollars in Alex's coverage over the next two years!
Enough of the blahs - we have family and friends, and even strangers supporting us as we navigate this difficult path. We'll make it...I know we will!
We had a bad night last night - Alex was really nauseous from the Vincristine and Duanorubicin, and ended up throwing up all over the hallway last night. He woke up complaining that his stomach hurt four times. I ended up sleeping with him in his little bed for half the night. Then, Tessa-Lynn woke up with all of the commotion. We tried giving Alex some Benadryl for nausea, and that didn't work, and we couldn't give him another dose of Zofran until noon today.
He's much more lethargic than normal - and this kid is always a bundle of energy. He's exhausted, and so are we - and we still have almost 2 years to go.
I got a statement from the hospital listing the services received, and what they billed our insurance. For the period of 11/11 - 11/17, the bill was over $49,000 - of that, almost $16,000 was pharmaceuticals. This statement doesn't even cover the cost of the doctors...I don't know how anyone can go through this without health insurance. Hopefully, our insurance will pay for most of this, but to be honest, we are still trying to figure out what they will or won't pay for, and what, if any, the lifetime cap is. At this rate, we'll blow past one million dollars in Alex's coverage over the next two years!
Enough of the blahs - we have family and friends, and even strangers supporting us as we navigate this difficult path. We'll make it...I know we will!
Friday, November 28, 2008
Chemo side effects
As Alex's face puffs up from the steroids, I can't help but think of the other side effects of the medicine that we are pushing into his body during the Induction Phase...
Prednisone: (oral tablet - 2 times a day) Increased appetite (oh yes, we have seen that), weight gain, fluid retention, full or round "moon" face, stomach upset, irritability and mood changes (yah - we know that one!), less resistance to infection and longer time for healing, craving for salty foods (yep).
Vincristine: (IV drip - once a week on Friday) Constipation (he's on laxatives daily...), stomach pain (we had that two nights ago, he couldn't sleep, and just cried while we had him in bed with us), hair loss (not yet, but any day now...) irritation of nerves: numbness and tingling of fingers and toes, muscle weakness (I think when he complains of his arms and legs hurting, that this is what he is experiencing), jaw/joint pain (he said his "teeth hurt" while in the hospital - we think it was this side effect)
Daunorubicin: (IV drip - once a week on Friday) Nausea/vomiting, urine may turn pink/red for 2 days after treatment (yep), hair loss (any day now) low blood counts 1 to 2 weeks after treatment (we are starting to see that now), mouth soars (we saw that in the hospital), heart muscle damage (they are doing echo cardiograms - a heart ultrasound - to make sure this doesn't happen - his heart is very strong and healthy)
Prednisone: (oral tablet - 2 times a day) Increased appetite (oh yes, we have seen that), weight gain, fluid retention, full or round "moon" face, stomach upset, irritability and mood changes (yah - we know that one!), less resistance to infection and longer time for healing, craving for salty foods (yep).
Vincristine: (IV drip - once a week on Friday) Constipation (he's on laxatives daily...), stomach pain (we had that two nights ago, he couldn't sleep, and just cried while we had him in bed with us), hair loss (not yet, but any day now...) irritation of nerves: numbness and tingling of fingers and toes, muscle weakness (I think when he complains of his arms and legs hurting, that this is what he is experiencing), jaw/joint pain (he said his "teeth hurt" while in the hospital - we think it was this side effect)
Daunorubicin: (IV drip - once a week on Friday) Nausea/vomiting, urine may turn pink/red for 2 days after treatment (yep), hair loss (any day now) low blood counts 1 to 2 weeks after treatment (we are starting to see that now), mouth soars (we saw that in the hospital), heart muscle damage (they are doing echo cardiograms - a heart ultrasound - to make sure this doesn't happen - his heart is very strong and healthy)
Methotrexate: (Spinal tap - 2 x per month) Mouth sores, nausea, vomiting, loss of appetite, abnormal liver function tests (twice weekly blood draws are watching for this one)
Asparaginase: (double shot in the thighs - approx twice a month) Loss of appetite, High blood sugar (they are checking his blood work twice a week), allergic reaction (we have an "eppie pen" to give him a shot if he has a reaction - none so far)
Cytarabine: (Spinal tap - once during Induction phase) Nausea, vomiting, loss of appetite, diarrhea, mouth sores
He also has: Oxycoten, Zolfran, Previcid, and Miralax...
He had his Chemo appointment today, and his blood counts are dropping as expected - all is going according to plan - I just hate the plan...
Thursday, November 27, 2008
Thanksgiving
On this Thanksgiving morning, we reflect on the generosity of our friends, family, and strangers who have taken Alex and our family into their hearts.
We have received amazing notes of well wishes & prayers, balloons, flowers, gifts, and food. And I have lost track of how many prayer lists Alex is on - there are no words to describe how completely enveloped we feel in love and support.
Our friends from Alex's playgroup and from his school, donated money to give us dinners from Dinners Done Right (the company prepares meals, and you just stick them in the freezer, and cook when needed). When our friend Melissa dropped off the food at our house, we were overwhelmed with gratitude. She also dropped off gifts for Alex - and handmade cards and a banner from his friends from both his playgroup, and school. We were in tears reading all the wonderful things people had written on the giant "get well soon" card, and looking at all the handmade artwork on the banner (we are hanging it in our downstairs living room).
This Thanksgiving morning, our family is surrounded by Grandpa Jim, Gamma Carol, Gampa Pat, Grandma Diana, Boppa Bob, my sister Elizabeth, and her fiance, Scott. We are also surrounded by all of you who read this blog, and are doing anything and everything you can to help us through this.
We have more to be thankful for this year than ever before. Alex's cancer was caught early, and his prognosis for recovery is excellent. We only have to take the Prednisone for another couple of weeks (yay!) Eric was able to stay at his job, and has the support of his co-workers. We have health insurance to pay for the medications (one of which retails for $750 per month!). We have family and friends who are willing to help at the drop of the hat. We have a (almost) completely remodeled house to keep us warm and safe. We have wonderful birth families who have been rooting for Alex, and their support has been really great.
We can't thank you all enough for everything you have done for us - our hearts are filled with gratitude - I don't know what else to say but THANK YOU...THANK YOU...THANK YOU
We have received amazing notes of well wishes & prayers, balloons, flowers, gifts, and food. And I have lost track of how many prayer lists Alex is on - there are no words to describe how completely enveloped we feel in love and support.
Our friends from Alex's playgroup and from his school, donated money to give us dinners from Dinners Done Right (the company prepares meals, and you just stick them in the freezer, and cook when needed). When our friend Melissa dropped off the food at our house, we were overwhelmed with gratitude. She also dropped off gifts for Alex - and handmade cards and a banner from his friends from both his playgroup, and school. We were in tears reading all the wonderful things people had written on the giant "get well soon" card, and looking at all the handmade artwork on the banner (we are hanging it in our downstairs living room).
This Thanksgiving morning, our family is surrounded by Grandpa Jim, Gamma Carol, Gampa Pat, Grandma Diana, Boppa Bob, my sister Elizabeth, and her fiance, Scott. We are also surrounded by all of you who read this blog, and are doing anything and everything you can to help us through this.
We have more to be thankful for this year than ever before. Alex's cancer was caught early, and his prognosis for recovery is excellent. We only have to take the Prednisone for another couple of weeks (yay!) Eric was able to stay at his job, and has the support of his co-workers. We have health insurance to pay for the medications (one of which retails for $750 per month!). We have family and friends who are willing to help at the drop of the hat. We have a (almost) completely remodeled house to keep us warm and safe. We have wonderful birth families who have been rooting for Alex, and their support has been really great.
We can't thank you all enough for everything you have done for us - our hearts are filled with gratitude - I don't know what else to say but THANK YOU...THANK YOU...THANK YOU
Tuesday, November 25, 2008
Weekend Update part 2
I forgot to share with you the answers to the questions I had when we went to the clinic on Friday...
1. Bark Dust: Our doctor told us "as long as he doesn't smoke it or eat it, he's ok" (I love our doctor!)
2. Swallowing Pills: We tried the peanut butter - it seemed to work on Friday (unfortunately, it didn't last...)
3. PICC dressing: Nope, it was OK - we'll change in on Tuesday...
4. Hand, Foot, and Mouth Virus: No exposure while visible sores from anyone in the family...
Here is an update on Saturday and Sunday:
On Saturday morning, we were really hoping that the peanut butter with the Prednisone would work. Since Eric didn't have to go to work, we gave Alex an hour to try and eat it - NO LUCK - he would take tiny bites, and had a fit when we tried to get him to eat the two bites. We ended up having to hold him down again and give him the Prednisone in the mango sherbet again - it was awful.
Not only that, but on Saturday and Sunday we have to give Alex Septra (an antibiotic to ward against Pneumonia). It's grape flavored, and Alex likes grape. But, he is so worked up about *any* medicine, that we have to hold him down for that one now too...it's so hard, and Alex just cries and pleads for us not to do it...we hate it - and so does Alex...
We tried having him swallow mini m&m's to practice swallowing pills, in hopes that we could avoid the "icky" medicine. He got to the point of swallowing the m&m's, but when it came to practice with the gel caps (filled with sugar), he spit it out - he hated the "slimy" texture. So, back to the frozen mango sherbet...
He gaged on his medicine, and we ended up having to push one of his Septra doses back to Monday...I hope it gets easier...
1. Bark Dust: Our doctor told us "as long as he doesn't smoke it or eat it, he's ok" (I love our doctor!)
2. Swallowing Pills: We tried the peanut butter - it seemed to work on Friday (unfortunately, it didn't last...)
3. PICC dressing: Nope, it was OK - we'll change in on Tuesday...
4. Hand, Foot, and Mouth Virus: No exposure while visible sores from anyone in the family...
Here is an update on Saturday and Sunday:
On Saturday morning, we were really hoping that the peanut butter with the Prednisone would work. Since Eric didn't have to go to work, we gave Alex an hour to try and eat it - NO LUCK - he would take tiny bites, and had a fit when we tried to get him to eat the two bites. We ended up having to hold him down again and give him the Prednisone in the mango sherbet again - it was awful.
Not only that, but on Saturday and Sunday we have to give Alex Septra (an antibiotic to ward against Pneumonia). It's grape flavored, and Alex likes grape. But, he is so worked up about *any* medicine, that we have to hold him down for that one now too...it's so hard, and Alex just cries and pleads for us not to do it...we hate it - and so does Alex...
We tried having him swallow mini m&m's to practice swallowing pills, in hopes that we could avoid the "icky" medicine. He got to the point of swallowing the m&m's, but when it came to practice with the gel caps (filled with sugar), he spit it out - he hated the "slimy" texture. So, back to the frozen mango sherbet...
He gaged on his medicine, and we ended up having to push one of his Septra doses back to Monday...I hope it gets easier...
Monday, November 24, 2008
Weekend Update - Part 1
Sorry to be silent for a few days - I'm cooking breakfast in the kitchen, and typing on the laptop, while Tessa-Lynn is eating her breakfast, and Alex is watching Tom and Jerry cartoons in the other room. My sister Elizabeth is asleep in the other room, and the cat is on the counter - shoo!
Alright - catch up time...
Friday:
I didn't actually get to the "road trip" with Alex to distract him from eating. The sun came out, so we went outside. Tessa-Lynn *was* hungry, and so, I had her inside, and fed her while keeping Alex distracted outside. Then, we went on a red wagon ride around the neighborhood. When we got back, there was a present from one of Alex's school-mates from last year on the front steps - that was a great distraction, as Alex became obsessed with *needing* chicken nuggets to eat. Just as we were reaching critical mass about not eating, my mom drove up to take care of Tessa, and Alex and I were able to get in the car and head to our clinic appointment.
Once we were at the hospital, I loaded Alex in the red wagon, and away we went. Alex enjoyed riding in it, and I'm sure it will get a lot of miles over the next two years...
Alex was a real trooper while the nurse put the Zofran (anti-nausea) in his PICC line, and let them draw blood. Then we went to the play area for a bit, while they got the procedure room ready for his Lumbar Puncture to give him the Methotrexate directly into his spinal fluid. The doctors said that the mass in his chest has reduced so much that they were comfortable giving him regular sedation, instead of the twilight medications (Ketamine). He took a while to go under (that strong will of his!), but once he did, the procedure lasted only 10 minutes, and then I could come back into the room with him. He received glow in the dark stickers, and while he was waking up, the nurses gave him the Vincristine and Daunorubicin.
We then tried peanut butter on a graham cracker to mask the taste of the Prednisone. He ate it! I thought - awesome - we finally got the trick!
After we got back to his room, the nurse gave him some Oreo cookies (he hadn't eaten anything since 10am), which he proceeded to crumble and throw to the floor (frustration, and steroids - gotta love it!) So, we left, and headed for home.
I forgot to have him go to the bathroom before we left, and since we were heading off the hill at 5pm on a Friday night - traffic was awful! We hadn't even reached the freeway, after crawling down the hill, when Alex said "Mommy...I have to go pee!" Ugh...I looked around frantically, and found a bowl that I had brought some jello in. I pulled into the YMCA parking lot, dumped the jello, and Alex used the bowl. Lesson learned: Have a container ready - these medications are messing with his bladder function!
When we finally made it home at 6:15 (the hospital is only 10 miles away...), there was a casserole ready that our neighbor cooked for us, along with a salad and cookies - we were so grateful.
Next - Saturday (I promise to get you all caught up!)
Alright - catch up time...
Friday:
I didn't actually get to the "road trip" with Alex to distract him from eating. The sun came out, so we went outside. Tessa-Lynn *was* hungry, and so, I had her inside, and fed her while keeping Alex distracted outside. Then, we went on a red wagon ride around the neighborhood. When we got back, there was a present from one of Alex's school-mates from last year on the front steps - that was a great distraction, as Alex became obsessed with *needing* chicken nuggets to eat. Just as we were reaching critical mass about not eating, my mom drove up to take care of Tessa, and Alex and I were able to get in the car and head to our clinic appointment.
Once we were at the hospital, I loaded Alex in the red wagon, and away we went. Alex enjoyed riding in it, and I'm sure it will get a lot of miles over the next two years...
Alex was a real trooper while the nurse put the Zofran (anti-nausea) in his PICC line, and let them draw blood. Then we went to the play area for a bit, while they got the procedure room ready for his Lumbar Puncture to give him the Methotrexate directly into his spinal fluid. The doctors said that the mass in his chest has reduced so much that they were comfortable giving him regular sedation, instead of the twilight medications (Ketamine). He took a while to go under (that strong will of his!), but once he did, the procedure lasted only 10 minutes, and then I could come back into the room with him. He received glow in the dark stickers, and while he was waking up, the nurses gave him the Vincristine and Daunorubicin.
We then tried peanut butter on a graham cracker to mask the taste of the Prednisone. He ate it! I thought - awesome - we finally got the trick!
After we got back to his room, the nurse gave him some Oreo cookies (he hadn't eaten anything since 10am), which he proceeded to crumble and throw to the floor (frustration, and steroids - gotta love it!) So, we left, and headed for home.
I forgot to have him go to the bathroom before we left, and since we were heading off the hill at 5pm on a Friday night - traffic was awful! We hadn't even reached the freeway, after crawling down the hill, when Alex said "Mommy...I have to go pee!" Ugh...I looked around frantically, and found a bowl that I had brought some jello in. I pulled into the YMCA parking lot, dumped the jello, and Alex used the bowl. Lesson learned: Have a container ready - these medications are messing with his bladder function!
When we finally made it home at 6:15 (the hospital is only 10 miles away...), there was a casserole ready that our neighbor cooked for us, along with a salad and cookies - we were so grateful.
Next - Saturday (I promise to get you all caught up!)
Friday, November 21, 2008
More Chemo today
Alex is still having a real hard time with the Prednisone. It's just awful to hold him down while he pleads with us not to take the medicine. I'm going to check with the Pharmacy at the hospital today to see if they have another "syrup" that we could mix with the crushed pill. We've already ruined cherry, raspberry, and chocolate syrup, along with orange/mango sherbet, and ice cream. He can taste the Prednisone through all of it.
We are trying the mini m&m's - but so far, no luck...
Today, Alex has a Chemo appointment at the Clinic, and then a Spinal Tap (Lumbar Puncture - LP). So, no food after 10 am, and only clear liquids between 10am and 2pm - with nothing by mouth after 2pm. With his increased appetite, this is going to be hard. I cooked pancakes, sausage and eggs this morning, trying to fill him up as much as I can. At 9:30am I'll try to get more food in him to last the day. I'm so glad that the doctors consider "Jello" a clear liquid. At least he can have that after 10am.
He is taking the Prevacid, and the Miralax without issue, and allows us to flush his PICC with the Heprin each evening.
I have a bunch of questions to ask the doctors this morning:
1. We were told to keep him away from bark dust, since it can carry a mold that is really harmful to people with suppressed immune systems (unfortunately, that's about half our yard). What about the wood chips found in parks? Do we need to remove the bark dust we have - or just keep him from digging in it?
2. Any other tricks on getting a 3 1/2 year old to swallow a pill?
3. Does his PICC dressing need to be changed again (a little blood around the insertion site)
4. A friends child (K) has Hand Foot and Mouth Disease (a virus). Her other child (L) has already had it, and so has Alex. Can L be around Alex while her brother K has the illness? Or do we need to stay away, and if so, for how long?
I think I'll go on a small road trip with Alex and Tessa this morning to keep Alex away from the pantry and refrigerator. He's sitting on the couch watching the Wizard of Oz (he calls it the "Lizard of Pause"), and eating cheese sticks. I'm encouraging him to eat as much as he can now, since I have to cut off the food in 50 minutes.
Well, I've got to go clean up the kitchen, and get the Jello ready for him...
We are trying the mini m&m's - but so far, no luck...
Today, Alex has a Chemo appointment at the Clinic, and then a Spinal Tap (Lumbar Puncture - LP). So, no food after 10 am, and only clear liquids between 10am and 2pm - with nothing by mouth after 2pm. With his increased appetite, this is going to be hard. I cooked pancakes, sausage and eggs this morning, trying to fill him up as much as I can. At 9:30am I'll try to get more food in him to last the day. I'm so glad that the doctors consider "Jello" a clear liquid. At least he can have that after 10am.
He is taking the Prevacid, and the Miralax without issue, and allows us to flush his PICC with the Heprin each evening.
I have a bunch of questions to ask the doctors this morning:
1. We were told to keep him away from bark dust, since it can carry a mold that is really harmful to people with suppressed immune systems (unfortunately, that's about half our yard). What about the wood chips found in parks? Do we need to remove the bark dust we have - or just keep him from digging in it?
2. Any other tricks on getting a 3 1/2 year old to swallow a pill?
3. Does his PICC dressing need to be changed again (a little blood around the insertion site)
4. A friends child (K) has Hand Foot and Mouth Disease (a virus). Her other child (L) has already had it, and so has Alex. Can L be around Alex while her brother K has the illness? Or do we need to stay away, and if so, for how long?
I think I'll go on a small road trip with Alex and Tessa this morning to keep Alex away from the pantry and refrigerator. He's sitting on the couch watching the Wizard of Oz (he calls it the "Lizard of Pause"), and eating cheese sticks. I'm encouraging him to eat as much as he can now, since I have to cut off the food in 50 minutes.
Well, I've got to go clean up the kitchen, and get the Jello ready for him...
Thursday, November 20, 2008
The new "normal"
When we left the hospital, the social worker told us that we would be coming home to a "new normal". Yesterday was our first real look at it.
Eric went back to work, and Alex, Tessa and I hung out at the house. We watched Scooby Doo, and played with toys all day. Alex really misses his friends and school, and we are hoping that he can return to his friends soon.
One thing to remember: Alex's visitors need to be up to date on their vaccinations (for their age), *and* have a flu vaccine - parents too. If the flu shot is given, then Alex can be around immediately. If the flu vaccine is given in the nose (flu mist nasal spray), that is a live vaccine, and Alex cannot be around the person for 6 weeks. So, I'm going to have to check with Alex's school, and make sure all his classmates have had the flu shot, or if they want the flu mist, that they do it as soon as possible, or it will delay Alex's return to school.
I'm trying to find a routine to keep the house extra clean (bathrooms, laundry) so that we keep Alex as healthy as possible. I think we'll all be a little OCD by the time we are done. I don't even know how many times I washed and sanitized my hands yesterday!
Alex's appetite is increasing - all he wanted yesterday was Salami - and this morning it was bagel pizzas, along with one egg and two sausage - the steroids are working!
Since the sun was out yesterday, we went for a walk around the block. Alex took his " bat copter" (his red jeep), and Tessa-Lynn was in the "bat mobile" (the red wagon). It was nice to get out, and just enjoy the day for a while. Last night, Alex was cleared to go to a basketball game with Eric - they had so much fun! Tessa and I stayed home, and watched for them on TV (no sighting).
This morning, Alex had a *really* hard time taking the Prednisone again. We had to hold him down while we gave it to him - it just breaks our heart! I am going to get "mini" M&M's today, to practice with Alex to swallow a pill. If he can successfully swallow a pill, we can put the crushed up Prednisone in a gel cap, and he wouldn't have to taste it at all. With Alex's mood swings though, it's really hit and miss on when he will be receptive...
It's a rainy cruddy day, and we will have to start getting real creative to find things to keep Alex occupied (instead of watching TV all day). Any suggestions are welcome! - I have to keep Tessa-Lynn occupied at the same time...
I hope that once Alex's friends are healthy, they can come over and play - Alex would love it!
Eric went back to work, and Alex, Tessa and I hung out at the house. We watched Scooby Doo, and played with toys all day. Alex really misses his friends and school, and we are hoping that he can return to his friends soon.
One thing to remember: Alex's visitors need to be up to date on their vaccinations (for their age), *and* have a flu vaccine - parents too. If the flu shot is given, then Alex can be around immediately. If the flu vaccine is given in the nose (flu mist nasal spray), that is a live vaccine, and Alex cannot be around the person for 6 weeks. So, I'm going to have to check with Alex's school, and make sure all his classmates have had the flu shot, or if they want the flu mist, that they do it as soon as possible, or it will delay Alex's return to school.
I'm trying to find a routine to keep the house extra clean (bathrooms, laundry) so that we keep Alex as healthy as possible. I think we'll all be a little OCD by the time we are done. I don't even know how many times I washed and sanitized my hands yesterday!
Alex's appetite is increasing - all he wanted yesterday was Salami - and this morning it was bagel pizzas, along with one egg and two sausage - the steroids are working!
Since the sun was out yesterday, we went for a walk around the block. Alex took his " bat copter" (his red jeep), and Tessa-Lynn was in the "bat mobile" (the red wagon). It was nice to get out, and just enjoy the day for a while. Last night, Alex was cleared to go to a basketball game with Eric - they had so much fun! Tessa and I stayed home, and watched for them on TV (no sighting).
This morning, Alex had a *really* hard time taking the Prednisone again. We had to hold him down while we gave it to him - it just breaks our heart! I am going to get "mini" M&M's today, to practice with Alex to swallow a pill. If he can successfully swallow a pill, we can put the crushed up Prednisone in a gel cap, and he wouldn't have to taste it at all. With Alex's mood swings though, it's really hit and miss on when he will be receptive...
It's a rainy cruddy day, and we will have to start getting real creative to find things to keep Alex occupied (instead of watching TV all day). Any suggestions are welcome! - I have to keep Tessa-Lynn occupied at the same time...
I hope that once Alex's friends are healthy, they can come over and play - Alex would love it!
Wednesday, November 19, 2008
A good day
Yesterday was a good day - we all woke up in our own beds - and had successful medicine doses.
We had a clinic appointment at the hospital, just to make sure Alex was taking his medicine, and to change his PICC dressing (I have a feeling we will be doing that a lot until the Port (chest stint) is placed on Dec 16th). We used the red wagon to cart both Alex and Tessa-Lynn around the hospital. Everything went well, and we were back home within a couple of hours.
Then, Alex, Tessa-Lynn and I went to my Mom's house while Merry Maids did a "deep clean" of our house (thanks Mom!) After they were done, we came home, and ate a nice dinner prepared by our friend Taegen.
No big plans for today - just staying close to home...
Alex will be able to go back to school once he is off the steroids (so probably January) - I know he is already anxious to play with friends...
We expect that he will start to loose his hair next week. Eric, Alex's Grandpa Jim and Grandpa Pat will all be participating in "operation cue-ball" - and shaving their heads with Alex. (I'll be sure to get some pictures of that!)
We had a clinic appointment at the hospital, just to make sure Alex was taking his medicine, and to change his PICC dressing (I have a feeling we will be doing that a lot until the Port (chest stint) is placed on Dec 16th). We used the red wagon to cart both Alex and Tessa-Lynn around the hospital. Everything went well, and we were back home within a couple of hours.
Then, Alex, Tessa-Lynn and I went to my Mom's house while Merry Maids did a "deep clean" of our house (thanks Mom!) After they were done, we came home, and ate a nice dinner prepared by our friend Taegen.
No big plans for today - just staying close to home...
Alex will be able to go back to school once he is off the steroids (so probably January) - I know he is already anxious to play with friends...
We expect that he will start to loose his hair next week. Eric, Alex's Grandpa Jim and Grandpa Pat will all be participating in "operation cue-ball" - and shaving their heads with Alex. (I'll be sure to get some pictures of that!)
Tuesday, November 18, 2008
Home at last and success with Prednisone!
Yesterday was our last day in the Pediatric Oncology unit. We received tons of instruction on how to flush his PICC each day, and which medications to give when, and a list of appointments to come back.
We also saw the social workers, who helped us fill out more forms for different organizations that can help us financially, and emotionally.
We were also instructed on Alex's "counts" - the numbers derived from his blood draws.
We also had success with dosing the Prednisone to Alex when we got home. No more chocolate for him - we gave it to him in "Moose Tracks" ice cream. He still didn't like it very much, but he didn't gag! We had the same success this morning...we are all feeling better about it.
The doctors cannot feel the mass in his neck anymore (yay!), and say he is responding well to treatment.
I'm so grateful for the red wagon we received - it took two trips with the wagon overflowing to get all our stuff out of the hospital. Then, with the balloons, and Alex, we ended up having to tie the wagon to the roof of the car to get home!
We have received so many wonderful gifts, notes, emails, and voice mails from people all over the country. If we haven't replied directly to you, let me take this opportunity to say "Thanks!"
Every day, we are one day closer to declaring Alex "cured"
We also saw the social workers, who helped us fill out more forms for different organizations that can help us financially, and emotionally.
We were also instructed on Alex's "counts" - the numbers derived from his blood draws.
We also had success with dosing the Prednisone to Alex when we got home. No more chocolate for him - we gave it to him in "Moose Tracks" ice cream. He still didn't like it very much, but he didn't gag! We had the same success this morning...we are all feeling better about it.
The doctors cannot feel the mass in his neck anymore (yay!), and say he is responding well to treatment.
I'm so grateful for the red wagon we received - it took two trips with the wagon overflowing to get all our stuff out of the hospital. Then, with the balloons, and Alex, we ended up having to tie the wagon to the roof of the car to get home!
We have received so many wonderful gifts, notes, emails, and voice mails from people all over the country. If we haven't replied directly to you, let me take this opportunity to say "Thanks!"
Every day, we are one day closer to declaring Alex "cured"
Monday, November 17, 2008
Going home
We get to go home today - we are happy about getting to be a family of 4 again, but also scared since we will be completely responsible for Alex's care when he isn't at the Hospital Clinic.
Today, the Discharge Coordinator will be talking with us about our home health service, which will bring us our medical supplies, and change Alex's PICC dressing, if needed. We'll be coming back here twice a week for quite a while for more Chemo. This phase is called Induction, and it is gruelling.
Last night, Alex was complaining about his "teeth" hurting - we think it is actually his mouth, and that it is one of the side effects of the Daunorubicin - mouth sores. He is really trying to be brave, but he just doesn't understand why he hurts, and why this is happening to him.
We are trying to teach him how to swallow a pill, so he doesn't have to taste the Prednisone. The unit here had success teaching another 3 1/2 year old girl how to swallow the pills, but with Alex not wanting to put anything in his mouth, it's been a real uphill battle. We have sticker charts and prizes - but so far, not a lot of luck with that- we'll keep trying...
Our friend Deb is delivering a Red Wagon here to the hospital for us to load all of our stuff in to bring home. Thanks so much! The Red Wagon is sort of the vehicle of choice (instead of a wheel chair) for the younger kids in the unit. I know I'll be wheeling Alex back and forth in it for quite a while. We are going to name it: "Alex's Battle Wagon". Other friends are working on meals for us - we are so grateful!
We also heard a little bit more about his treatment plan, and that he will need blood transfusions as the Chemo wipes out his bone marrow production. I'm encouraging everyone that has asked "what can I do for you and Alex?" to contact the Red Cross and see if you can donate blood or platelets. It won't go directly to him, but it will help replenish the blood he does take from the Blood Bank. Eric and I have donated blood for years, and we encourage you to do the same by going to this website to find a donation site in your area: http://www.givelife.org/. And while Alex most likely won't need a bone marrow transplant, a lot of kids on this unit do. If you are interested in getting your bone marrow tested, and adding your name to the bone marrow donor bank, you can do so here: http://www.marrow.org/.
Also, I encourage *all* of our friends and family who are pregnant, or who are planing on becoming pregnant to talk to their doctors about cord blood and either donating it, or storing it for your child. You can find out more about this amazing option here:
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
All of these things help save lives. Please consider at least one of these actions in Alex's honor.
It's time to give the Prednisone, so I better go...
With love, Sara, Eric, Alex & Tessa-Lynn
Today, the Discharge Coordinator will be talking with us about our home health service, which will bring us our medical supplies, and change Alex's PICC dressing, if needed. We'll be coming back here twice a week for quite a while for more Chemo. This phase is called Induction, and it is gruelling.
Last night, Alex was complaining about his "teeth" hurting - we think it is actually his mouth, and that it is one of the side effects of the Daunorubicin - mouth sores. He is really trying to be brave, but he just doesn't understand why he hurts, and why this is happening to him.
We are trying to teach him how to swallow a pill, so he doesn't have to taste the Prednisone. The unit here had success teaching another 3 1/2 year old girl how to swallow the pills, but with Alex not wanting to put anything in his mouth, it's been a real uphill battle. We have sticker charts and prizes - but so far, not a lot of luck with that- we'll keep trying...
Our friend Deb is delivering a Red Wagon here to the hospital for us to load all of our stuff in to bring home. Thanks so much! The Red Wagon is sort of the vehicle of choice (instead of a wheel chair) for the younger kids in the unit. I know I'll be wheeling Alex back and forth in it for quite a while. We are going to name it: "Alex's Battle Wagon". Other friends are working on meals for us - we are so grateful!
We also heard a little bit more about his treatment plan, and that he will need blood transfusions as the Chemo wipes out his bone marrow production. I'm encouraging everyone that has asked "what can I do for you and Alex?" to contact the Red Cross and see if you can donate blood or platelets. It won't go directly to him, but it will help replenish the blood he does take from the Blood Bank. Eric and I have donated blood for years, and we encourage you to do the same by going to this website to find a donation site in your area: http://www.givelife.org/. And while Alex most likely won't need a bone marrow transplant, a lot of kids on this unit do. If you are interested in getting your bone marrow tested, and adding your name to the bone marrow donor bank, you can do so here: http://www.marrow.org/.
Also, I encourage *all* of our friends and family who are pregnant, or who are planing on becoming pregnant to talk to their doctors about cord blood and either donating it, or storing it for your child. You can find out more about this amazing option here:
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
All of these things help save lives. Please consider at least one of these actions in Alex's honor.
It's time to give the Prednisone, so I better go...
With love, Sara, Eric, Alex & Tessa-Lynn
Sunday, November 16, 2008
Beautiful Boy - Lyrics by John Lennon
Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,
Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,
Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
A roller coaster - part 2
What a difference a couple hours and a change of scenery makes...
When I signed off of the last blog posting, I was expecting to enter a war zone. What I found was an excited boy playing froggy (ribbit, ribbit), and a husband with a big grin on his face. The nurse had given Alex the OK to keep his IV off as long as he had 4 tablespoons of liquid per hour. She had also told him that there was an outside playground downstairs, and that Alex was cleared to go play for about 1/2 hour.
We got him dressed, we put on our jackets, and Alex went outside for the first time since Monday evening (a whole week - can you imagine!) The play structure was great - with a rock wall to climb, slides to go down, ladders to go up, and fireman poles to go down. Alex decided we were going to play firemen - he was captain (hmmm...who was it that told me our son was a natural leader?), and Eric and I were his crew. We scaled the rock wall, zoomed down the slides, climbed up the ladders, and slid down the fireman's pole for the full 30 minutes. This was our son - this was the little boy we hadn't seen for the last few days. He was laughing, running, climbing, and just being a 3 1/2 year old - it was pure joy for all of us! We then walked through the hospital "hamster tube" A really long enclosed pedestrian suspension bridge between OHSU and the Veterans Hospital - I'm putting a link to Google maps here: <http://maps.google.com/maps?f=q&hl=en&geocode=&q=3181+SW+Sam+Jackson+Park+Rd,+Portland+OR&sll=45.504772,-122.685571&sspn=0.000825,0.001717&ie=UTF8&ll=45.49815,-122.684798&spn=0.001651,0.003433&t=h&z=18>
That long white line in the middle of the map is the tube high above the trees. Alex really enjoyed his freedom, and came back to the hospital room riding on Eric's shoulders. We were just two parents and their child enjoying some time together - we savored every minute.
When we came back, the nurse was ready to change his PICC dressing (he got it wet when we tried to do a bath today - I'm gonna have to do sponge baths for a while - it *can't* get wet...) Alex fell asleep while the nurse finished the dressing change, and that's where he is right now.
Quiet time...I can't wait to go home...
When I signed off of the last blog posting, I was expecting to enter a war zone. What I found was an excited boy playing froggy (ribbit, ribbit), and a husband with a big grin on his face. The nurse had given Alex the OK to keep his IV off as long as he had 4 tablespoons of liquid per hour. She had also told him that there was an outside playground downstairs, and that Alex was cleared to go play for about 1/2 hour.
We got him dressed, we put on our jackets, and Alex went outside for the first time since Monday evening (a whole week - can you imagine!) The play structure was great - with a rock wall to climb, slides to go down, ladders to go up, and fireman poles to go down. Alex decided we were going to play firemen - he was captain (hmmm...who was it that told me our son was a natural leader?), and Eric and I were his crew. We scaled the rock wall, zoomed down the slides, climbed up the ladders, and slid down the fireman's pole for the full 30 minutes. This was our son - this was the little boy we hadn't seen for the last few days. He was laughing, running, climbing, and just being a 3 1/2 year old - it was pure joy for all of us! We then walked through the hospital "hamster tube" A really long enclosed pedestrian suspension bridge between OHSU and the Veterans Hospital - I'm putting a link to Google maps here: <http://maps.google.com/maps?f=q&hl=en&geocode=&q=3181+SW+Sam+Jackson+Park+Rd,+Portland+OR&sll=45.504772,-122.685571&sspn=0.000825,0.001717&ie=UTF8&ll=45.49815,-122.684798&spn=0.001651,0.003433&t=h&z=18>
That long white line in the middle of the map is the tube high above the trees. Alex really enjoyed his freedom, and came back to the hospital room riding on Eric's shoulders. We were just two parents and their child enjoying some time together - we savored every minute.
When we came back, the nurse was ready to change his PICC dressing (he got it wet when we tried to do a bath today - I'm gonna have to do sponge baths for a while - it *can't* get wet...) Alex fell asleep while the nurse finished the dressing change, and that's where he is right now.
Quiet time...I can't wait to go home...
A roller coaster
Today we are on a roller coaster - the steroids are causing major mood changes, and Alex is hitting, biting, scratching and kicking. This is not the sweet boy I know. He is scared, he is frustrated, he is confused, and he is pumped full of chemicals. Our heart aches for him.
We may be able to go home tomorrow, but between now and then are 3 more Prednisone doses, and two shots in each thigh at the same time (another Chemo drug called PEG Asparaginase). He also has 3 more Allopurinol doses, a Zantac dose, and another Septra dose. Our goal today is to not let him throw up with any of these.
We have been told that after the "Induction Phase" (first 30 days) that he'll be officially in "remission". We thought that was fast, when talking about a 2 year Chemo regimen, but our doctor explained it like this.
Alex had 10 to the 10th power of cancer cells (100 billion). The steroids will kill 99% of the cancer cells in the first 30 days. After 30 days, they won't be able to detect cancer cells in his body - that by definition is "remission". But that still leaves 1 billion cancer cells in his body, that are by the simple fact that they are there, resistant to the steroids. The next 23 months, are targeted to kill those last 1 billion cells. It only takes 1 cell to create a new tumor.
We have a long road, and today has been really hard (and it's only 1pm) - I better go, I think it's about time for some additional medication...
We may be able to go home tomorrow, but between now and then are 3 more Prednisone doses, and two shots in each thigh at the same time (another Chemo drug called PEG Asparaginase). He also has 3 more Allopurinol doses, a Zantac dose, and another Septra dose. Our goal today is to not let him throw up with any of these.
We have been told that after the "Induction Phase" (first 30 days) that he'll be officially in "remission". We thought that was fast, when talking about a 2 year Chemo regimen, but our doctor explained it like this.
Alex had 10 to the 10th power of cancer cells (100 billion). The steroids will kill 99% of the cancer cells in the first 30 days. After 30 days, they won't be able to detect cancer cells in his body - that by definition is "remission". But that still leaves 1 billion cancer cells in his body, that are by the simple fact that they are there, resistant to the steroids. The next 23 months, are targeted to kill those last 1 billion cells. It only takes 1 cell to create a new tumor.
We have a long road, and today has been really hard (and it's only 1pm) - I better go, I think it's about time for some additional medication...
Medicine - part 2
Yesterday was awful.
Alex threw up his medicine 3 times - we had to physically restrain him and force open his mouth to get the medicine in - something I never imagined we would have to do. We are drained, and the only way we are able to get through those sessions with his medicine, is knowing that we are doing it to save his life. He is too young to understand it. One day, when he is much older, I hope he can read this, and understand why we had to force medicine in his mouth.
We did have some good parts of the day - Uncle Nick and Aunt Sierra visited again, our friend Taegen along with her two children came for a visit, and Grandma Diana and Grandpa Bob came by with sweet Tessa-Lynn for a while.
Alex had to cut his visit short with his friends, when he threw up after trying to take his steroid medicine (the Prednisone) mixed with chocolate syrup on a spoon- it just tastes terrible, and he gags on it. Then, he just fell asleep.
Later, he was so hungry (steroid side effect), and he chowed down almost a full 6 inch Subway sandwich. We then gave him his medicine in some pudding again, but this time in a syringe. He gaged again, and threw everything up. So, he missed another steroid dose...
Later, I took Tessa-Lynn to visit her birth parents for a little while, and Eric and Uncle Nick and the nurse were able to hold Alex down enough to get the Allopurinol in him. He actually doesn't mind that one, and actually liked his lips when they were done. Then, after Uncle Nick and Aunt Sierra left, Alex's night medicines came. Everyone forgot to put the Ativan (for anxiety) in his IV before they started dosing. The nurse came in with 4 medications to take at once - and Alex flipped out. Eric held him down, and they got 3 of the 4 in just fine, but when they gave him the Zantac (peppermint flavored antacid), the threw everything back up. Eric was a wreck when I got back to the hospital room an hour later. Alex was asleep, and he had missed another dose of the Prednisone (steroid). Eric and I talked with the night nurse, and she administered the Ativan, and 30 minutes later, we were successful in getting the Prednisone and Allopurinol in him, without him throwing up. We held off on the Zantac and the Septra (an antibiotic) until Sunday.
So a couple successes, and a lot of messes...hopefully today will be better...
Alex threw up his medicine 3 times - we had to physically restrain him and force open his mouth to get the medicine in - something I never imagined we would have to do. We are drained, and the only way we are able to get through those sessions with his medicine, is knowing that we are doing it to save his life. He is too young to understand it. One day, when he is much older, I hope he can read this, and understand why we had to force medicine in his mouth.
We did have some good parts of the day - Uncle Nick and Aunt Sierra visited again, our friend Taegen along with her two children came for a visit, and Grandma Diana and Grandpa Bob came by with sweet Tessa-Lynn for a while.
Alex had to cut his visit short with his friends, when he threw up after trying to take his steroid medicine (the Prednisone) mixed with chocolate syrup on a spoon- it just tastes terrible, and he gags on it. Then, he just fell asleep.
Later, he was so hungry (steroid side effect), and he chowed down almost a full 6 inch Subway sandwich. We then gave him his medicine in some pudding again, but this time in a syringe. He gaged again, and threw everything up. So, he missed another steroid dose...
Later, I took Tessa-Lynn to visit her birth parents for a little while, and Eric and Uncle Nick and the nurse were able to hold Alex down enough to get the Allopurinol in him. He actually doesn't mind that one, and actually liked his lips when they were done. Then, after Uncle Nick and Aunt Sierra left, Alex's night medicines came. Everyone forgot to put the Ativan (for anxiety) in his IV before they started dosing. The nurse came in with 4 medications to take at once - and Alex flipped out. Eric held him down, and they got 3 of the 4 in just fine, but when they gave him the Zantac (peppermint flavored antacid), the threw everything back up. Eric was a wreck when I got back to the hospital room an hour later. Alex was asleep, and he had missed another dose of the Prednisone (steroid). Eric and I talked with the night nurse, and she administered the Ativan, and 30 minutes later, we were successful in getting the Prednisone and Allopurinol in him, without him throwing up. We held off on the Zantac and the Septra (an antibiotic) until Sunday.
So a couple successes, and a lot of messes...hopefully today will be better...
Saturday, November 15, 2008
Medicine
Well, at about 5am this morning, Alex finally took his med's that were due at 9pm...Eric mixed it in some chocolate pudding, and he took it. We've been told that double chocolate Hersey's syrup is the best for masking awful tastes, so we are going to have Uncle Nick and Aunt Sierra pick some up on their way here to visit today...
Chemo sucks - this whole thing sucks - it's very difficult for Alex to understand all of this. He "felt fine" when we checked in, and now he is in the hospital and feeling physically sicker as the Chemo blasts away this tumor.
I keep thinking - "this is backwards - you are supposed to go to the hospital to feel better not worse" I know that this is really the only option, and that we are so lucky that we caught this as a Stage 2 cancer - many kids on this ward weren't so lucky.
Stage 1 is cancer in one spot
Stage 2 is in two or more spots on the same side of the body
Stage 3 is in two or more spots on both sides of the body
Stage 4 is in two or more spots on both sides of the body, and in the central nervous system and bone marrow.
Our friend Deb asked if Alex was one of the youngest in this unit - and I said "no" - there are cribs here with little babies - there is another 3 year old girl who came in the same night as Alex - it just sucks...
OK - enough ranting, thanks for listening and keeping us in your thoughts and prayers!
Chemo sucks - this whole thing sucks - it's very difficult for Alex to understand all of this. He "felt fine" when we checked in, and now he is in the hospital and feeling physically sicker as the Chemo blasts away this tumor.
I keep thinking - "this is backwards - you are supposed to go to the hospital to feel better not worse" I know that this is really the only option, and that we are so lucky that we caught this as a Stage 2 cancer - many kids on this ward weren't so lucky.
Stage 1 is cancer in one spot
Stage 2 is in two or more spots on the same side of the body
Stage 3 is in two or more spots on both sides of the body
Stage 4 is in two or more spots on both sides of the body, and in the central nervous system and bone marrow.
Our friend Deb asked if Alex was one of the youngest in this unit - and I said "no" - there are cribs here with little babies - there is another 3 year old girl who came in the same night as Alex - it just sucks...
OK - enough ranting, thanks for listening and keeping us in your thoughts and prayers!
Friday, November 14, 2008
Day 1 - Chemo
The doctors decided to split day one into two days to ease our sweet boy into the world of full blown Chemotherapy. It’s hard to wrap our heads around the idea that poisoning our son will make him better, but that’s really what it is...
He really hates his oral Prednisone (the steroid) medicine, and actually gagged so hard he threw up this evening. We have to try again in a few hours when he wakes up to go to the bathroom – I hope that with him half asleep he won’t fight it too hard.
Eric and Alex are sleeping, so I thought I would catch everyone up on the day.
We completely forgot to order food for Alex’s breakfast this morning– I’m sure we weren’t the first parent to forget this – so, we got a breakfast anyway – he ate the whole pancake, and a few bites of oatmeal, and was done – his appetite has not come up yet.
Our friend Deb visited this morning, bringing some cool Scooby Doo stuff, and some food. Thank you again! While Deb was visiting, an a capella group came in and started singing Disney songs for the kids - they were great, and Alex was very intrigued! (It was a very Srubs moment for those of you who follow that TV show...)
About 11am, we started the Chemo in his IV – the Daunorubicin is bright red, and made his urine red too. It also causes nausea – here we go! The Vincristine was put in next. Alex just played and ignored it all…
During lunch (which I had managed to order), Melissa and Rob stopped by with Alex’s buddy, their son Chandler, and their new baby boy Lincoln.
Eric took a much deserved trip down the hill (for those of you who don’t know, Doerenbecher hospital is in the hills over Portland) to check in at work, and stop by the house. While he was gone, Alex and I went to the awesome playroom, where the fabulous volunteers were doing art projects (clay, beads, painting, masks, etc.) Alex was making a really cool clay snake when Uncle Nick and Aunt Sierra walked in. Boy, Alex sure was excited to see them – he hid under the table for a few minutes – he gets easily overwhelmed lately (who can blame him!) After a few minutes, Alex was playing with the great John Deere tractor that they got for him!
A few minutes later, nurse Heidi (aka Han Solo) came to tell us that it was time to go back to the room and do another blood draw. Well, we got back to the room, and Alex had a meltdown. I’ve never seen him so upset and aggressive. I know it’s the steroids, and it is still hard to recognize my sweet boy in that face so contorted with anger, frustration, fear, and confusion. After some deep breaths, and calm voices, he relaxed, and let Heidi take the blood out of his PICC line (the semi-permanent IV) so there were no pokes, no owies. After that, he was my sweet funny boy again, building his train track, and showing Uncle Nick how to do it.
Soon after, Eric came back with more track for his train set, and we had to move back to the playroom for a table big enough to make a good track.
After Alex ate dinner (again, we forgot to order, but they gave us something anyway…) and a great visit, Uncle Nick and Aunt Sierra followed me down the hill back to our house, and I was able to eat dinner with them, which was nice. Then, I headed back here, and Eric told me that Alex had a really hard time taking his medicine, and that more medicine was due at 9pm, so no early bedtime for Alex!
After Alex threw up at 9pm from the Allopurinol (binds to the uric acid from the dead cancer cells, to help it pass through the kidneys) and Prednisone (the steroid), it was decided that we would add some Zofran to help with nausea. Alex fell asleep in my arms while we were deciding how to get Alex to take his medicines, including some Zantac for his stomach. I’m now looking at some chocolate pudding that we are going to try and mask the flavor of the medicine in – I hope it works, and doesn’t ruin chocolate pudding for him for the long, long rest of his life!
I’ll let you know how it goes tomorrow.
Sara, Eric, Alexander & Tessa-Lynn
He really hates his oral Prednisone (the steroid) medicine, and actually gagged so hard he threw up this evening. We have to try again in a few hours when he wakes up to go to the bathroom – I hope that with him half asleep he won’t fight it too hard.
Eric and Alex are sleeping, so I thought I would catch everyone up on the day.
We completely forgot to order food for Alex’s breakfast this morning– I’m sure we weren’t the first parent to forget this – so, we got a breakfast anyway – he ate the whole pancake, and a few bites of oatmeal, and was done – his appetite has not come up yet.
Our friend Deb visited this morning, bringing some cool Scooby Doo stuff, and some food. Thank you again! While Deb was visiting, an a capella group came in and started singing Disney songs for the kids - they were great, and Alex was very intrigued! (It was a very Srubs moment for those of you who follow that TV show...)
About 11am, we started the Chemo in his IV – the Daunorubicin is bright red, and made his urine red too. It also causes nausea – here we go! The Vincristine was put in next. Alex just played and ignored it all…
During lunch (which I had managed to order), Melissa and Rob stopped by with Alex’s buddy, their son Chandler, and their new baby boy Lincoln.
Eric took a much deserved trip down the hill (for those of you who don’t know, Doerenbecher hospital is in the hills over Portland) to check in at work, and stop by the house. While he was gone, Alex and I went to the awesome playroom, where the fabulous volunteers were doing art projects (clay, beads, painting, masks, etc.) Alex was making a really cool clay snake when Uncle Nick and Aunt Sierra walked in. Boy, Alex sure was excited to see them – he hid under the table for a few minutes – he gets easily overwhelmed lately (who can blame him!) After a few minutes, Alex was playing with the great John Deere tractor that they got for him!
A few minutes later, nurse Heidi (aka Han Solo) came to tell us that it was time to go back to the room and do another blood draw. Well, we got back to the room, and Alex had a meltdown. I’ve never seen him so upset and aggressive. I know it’s the steroids, and it is still hard to recognize my sweet boy in that face so contorted with anger, frustration, fear, and confusion. After some deep breaths, and calm voices, he relaxed, and let Heidi take the blood out of his PICC line (the semi-permanent IV) so there were no pokes, no owies. After that, he was my sweet funny boy again, building his train track, and showing Uncle Nick how to do it.
Soon after, Eric came back with more track for his train set, and we had to move back to the playroom for a table big enough to make a good track.
After Alex ate dinner (again, we forgot to order, but they gave us something anyway…) and a great visit, Uncle Nick and Aunt Sierra followed me down the hill back to our house, and I was able to eat dinner with them, which was nice. Then, I headed back here, and Eric told me that Alex had a really hard time taking his medicine, and that more medicine was due at 9pm, so no early bedtime for Alex!
After Alex threw up at 9pm from the Allopurinol (binds to the uric acid from the dead cancer cells, to help it pass through the kidneys) and Prednisone (the steroid), it was decided that we would add some Zofran to help with nausea. Alex fell asleep in my arms while we were deciding how to get Alex to take his medicines, including some Zantac for his stomach. I’m now looking at some chocolate pudding that we are going to try and mask the flavor of the medicine in – I hope it works, and doesn’t ruin chocolate pudding for him for the long, long rest of his life!
I’ll let you know how it goes tomorrow.
Sara, Eric, Alexander & Tessa-Lynn
A few laughs, friends and family
ARGH!
I just finished a post, and I accidentally deleted it… so, here I go again.
After Alex’s procedure yesterday (which was completely successful), he came back to the room all “loopy” – and telling us that his female nurse Heidi looked like Han Solo (from Star Wars)– I tell you, we’ll take any laugh we can get right now…He was looking at a Star Wars book, and said “Maaaameeeeee…..it’s the Meeeeleeeniuuuum Faaaalcoooon” – he was so out of it – at least we know he’ll be a happy drunk!
A few hours later, his friend Connor and mommy Joelle came by for a visit – Alex and Connor had a great time – and it was great for Alex to have a “Connor Fix”. We went to the playroom, where they laughed and giggled, and I’m sure generally annoyed everyone else in the room – but Alex was happy – and so were we.
We also had a visit from our friend Erin, who brought by some wonderful handmade gifts from Alex’s friends – we taped them to the door today for all to see J
My mom and step father Bob also came by with Tessa-Lynn, so we could be a family of four again for a few hours – I miss our sweet Tessa, and can’t wait until we get to come home next week to give her some much deserved Mommy and Daddy time. She is under the great care of Mom and Bob right now, and we are so grateful that they are here to give her the love and attention she needs right now. We know that we will probably be missing her first real crawls – she is so close now – but Mom and Bob are taking pictures, and keeping us updated. We’ll see them tomorrow again – I can’t wait!
After everyone left, we had some quieter moments in the room, watching Scooby Doo movies, and trying to get Alex to take the Prednisone in a liquid form (not easy, and really nasty tasting). I know that Alex needs his strong will to get him through this process, but it sure does make getting medicine down his throat a challenge!
We didn’t get to sleep until about 10:30 (more medicine to take, vitals to check, etc), and Alex woke up a few times during the night for bathroom visits. With all the fluid going through his IV, the poor guy is in the bathroom every few hours at night. Eric took the bathroom shift last night, so I could get some sleep. We’ll take turns to try and keep both of us from complete exhaustion!
More in a little while – thanks for all the great comments – It warms our hearts to see how many people are cheering for him!
Love,
Sara, Eric, Alexander & Tessa-Lynn
I just finished a post, and I accidentally deleted it… so, here I go again.
After Alex’s procedure yesterday (which was completely successful), he came back to the room all “loopy” – and telling us that his female nurse Heidi looked like Han Solo (from Star Wars)– I tell you, we’ll take any laugh we can get right now…He was looking at a Star Wars book, and said “Maaaameeeeee…..it’s the Meeeeleeeniuuuum Faaaalcoooon” – he was so out of it – at least we know he’ll be a happy drunk!
A few hours later, his friend Connor and mommy Joelle came by for a visit – Alex and Connor had a great time – and it was great for Alex to have a “Connor Fix”. We went to the playroom, where they laughed and giggled, and I’m sure generally annoyed everyone else in the room – but Alex was happy – and so were we.
We also had a visit from our friend Erin, who brought by some wonderful handmade gifts from Alex’s friends – we taped them to the door today for all to see J
My mom and step father Bob also came by with Tessa-Lynn, so we could be a family of four again for a few hours – I miss our sweet Tessa, and can’t wait until we get to come home next week to give her some much deserved Mommy and Daddy time. She is under the great care of Mom and Bob right now, and we are so grateful that they are here to give her the love and attention she needs right now. We know that we will probably be missing her first real crawls – she is so close now – but Mom and Bob are taking pictures, and keeping us updated. We’ll see them tomorrow again – I can’t wait!
After everyone left, we had some quieter moments in the room, watching Scooby Doo movies, and trying to get Alex to take the Prednisone in a liquid form (not easy, and really nasty tasting). I know that Alex needs his strong will to get him through this process, but it sure does make getting medicine down his throat a challenge!
We didn’t get to sleep until about 10:30 (more medicine to take, vitals to check, etc), and Alex woke up a few times during the night for bathroom visits. With all the fluid going through his IV, the poor guy is in the bathroom every few hours at night. Eric took the bathroom shift last night, so I could get some sleep. We’ll take turns to try and keep both of us from complete exhaustion!
More in a little while – thanks for all the great comments – It warms our hearts to see how many people are cheering for him!
Love,
Sara, Eric, Alexander & Tessa-Lynn
Thursday, November 13, 2008
The treatment plan - hope
We received so many wonderful emails and voicemails from all over the country with well-wishes and prayers - all were filled with hope. Your words have filled us with strength and most important hope. Hope that we have the support of so many, and hope that Alex will pull through this with the strength and determination that we all have come to love about this amazing boy!
We met with Alex's Oncology team yesterday evening, and got our "road map" to recovery. There was so much information - I'll try to summarize the best I can:
According to Dr. Stork - this is an extremely fast cancer - she says that if Alex had been in a car accident even last month, and received a chest x-ray at that time, this tumor would not have been visible. It doubles every 24-48 hours. So we caught it as soon as we could have.
Today is day 1 of treatment. Alex is receiving strong doses of steroids - this will melt away the mass and his kidneys will be put to the test, as the dead cancer cells "explode", and his body eliminates the waste. He is on another medicine that binds with the ureic acid in the cancer cell waste, and helps it pass through the kidneys. They are drawing blood through his IV every few hours to watch his kidney function - so far, so good. In a few minutes, Alex will be prepped for a procedure to put a "PICC" line (a semi-permanent IV line) to replace the IV he has now - the nurse just came in, and every time he sees one, he says "no pokes?" - needles are definitely scary for him. This procedure will also inject some chemo medicine directly into his spinal fluid. Even though there are no detectible cancer cells in the spinal fluid, it is standard procedure to use Chemo in the spinal fluid as a precaution - since most cancer of this type - if it was to return, would return there.
Alex is on the floor with Eric rolling his cars under the bed from one side to the other side - the IV line is hanging to his side - I am again just struck by how strong and amazing this little boy is...
Alright - we just got back from leaving Alex in the procedure room - when they gave him the sedative, his eyes got a far-away look - it's hard to leave him and watch the door close in our face as we take one last look before our boy is in the hands of his doctors.
During the next 29 days, his "road map" lists his medications - for those who like to research:
Day 1 - 29: Prednisone each day (oral)
Day 1 Cytarabine (in the spinal fluid)
Day 1 Vincristine (through IV)
Day 1 Daunorubicin (through IV)
Day 5 PEG Asparaginase (shot -ugh)
Day 8 Vincristine (through IV)
Day 8 Daunorubicin (through IV)
Day 8 Methotrexate (in the spinal fluid)
Day 15 Vincristine (through IV)
Day 15 Daunorubicin (through IV)
Day 22 Vincristine (through IV)
Day 22 Daunorubicin (through IV)
Day 29 Methotrexate (in the spinal fluid)
We expect that by mid-next week, we will get to go home - Alex keeps telling me "Mommy, I feel better - I want to go home" - breaks my heart...
Eric found some great articles on this type of cancer. The first one is in plain English:
http://www.childrenshospital.org/az/Site1258/mainpageS1258P0.html
This next one is for our scientific friends, who want all the technical details :-)
http://www.emedicine.com/med/TOPIC1364.HTM
We received a book from the nurses up here - it is really well written, and has more information on this family of cancers called: Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment & Options by Lorraine Johnston.
Another update in a few hours...
We met with Alex's Oncology team yesterday evening, and got our "road map" to recovery. There was so much information - I'll try to summarize the best I can:
According to Dr. Stork - this is an extremely fast cancer - she says that if Alex had been in a car accident even last month, and received a chest x-ray at that time, this tumor would not have been visible. It doubles every 24-48 hours. So we caught it as soon as we could have.
Today is day 1 of treatment. Alex is receiving strong doses of steroids - this will melt away the mass and his kidneys will be put to the test, as the dead cancer cells "explode", and his body eliminates the waste. He is on another medicine that binds with the ureic acid in the cancer cell waste, and helps it pass through the kidneys. They are drawing blood through his IV every few hours to watch his kidney function - so far, so good. In a few minutes, Alex will be prepped for a procedure to put a "PICC" line (a semi-permanent IV line) to replace the IV he has now - the nurse just came in, and every time he sees one, he says "no pokes?" - needles are definitely scary for him. This procedure will also inject some chemo medicine directly into his spinal fluid. Even though there are no detectible cancer cells in the spinal fluid, it is standard procedure to use Chemo in the spinal fluid as a precaution - since most cancer of this type - if it was to return, would return there.
Alex is on the floor with Eric rolling his cars under the bed from one side to the other side - the IV line is hanging to his side - I am again just struck by how strong and amazing this little boy is...
Alright - we just got back from leaving Alex in the procedure room - when they gave him the sedative, his eyes got a far-away look - it's hard to leave him and watch the door close in our face as we take one last look before our boy is in the hands of his doctors.
During the next 29 days, his "road map" lists his medications - for those who like to research:
Day 1 - 29: Prednisone each day (oral)
Day 1 Cytarabine (in the spinal fluid)
Day 1 Vincristine (through IV)
Day 1 Daunorubicin (through IV)
Day 5 PEG Asparaginase (shot -ugh)
Day 8 Vincristine (through IV)
Day 8 Daunorubicin (through IV)
Day 8 Methotrexate (in the spinal fluid)
Day 15 Vincristine (through IV)
Day 15 Daunorubicin (through IV)
Day 22 Vincristine (through IV)
Day 22 Daunorubicin (through IV)
Day 29 Methotrexate (in the spinal fluid)
We expect that by mid-next week, we will get to go home - Alex keeps telling me "Mommy, I feel better - I want to go home" - breaks my heart...
Eric found some great articles on this type of cancer. The first one is in plain English:
http://www.childrenshospital.org/az/Site1258/mainpageS1258P0.html
This next one is for our scientific friends, who want all the technical details :-)
http://www.emedicine.com/med/TOPIC1364.HTM
We received a book from the nurses up here - it is really well written, and has more information on this family of cancers called: Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment & Options by Lorraine Johnston.
Another update in a few hours...
The first few days - diagnosis
Hello everyone,
Some of you may have heard that Alexander is in the hospital. I'm not sure who knows what at this point, so I am sending out an email update to everyone.
This last week has been a nightmare. Alex has been diagnosed with Lymphoma, which is a cancer of the lymphatic system (we will have confirmation on the type of Lymphoma later today - they suspect T-Cell).He is in the pediatric oncology ward here at Doerenbecher Children's Hospital in Portland (the best pediatric cancer center in the state). Everyone here has been amazingly compassionate and we have received great care. Alex will be starting Chemotherapy this morning (anytime now as I write this)
Here is a history of how we got to this point:
November 1st, Alex started breathing "weird" - he had "stridor" breathing (which sounds like really labored breathing while "inhaling"). I called the advise nurse, and was told to take him to the emergency room at Meridian Park Hospital in Tualatin (near us and his pediatrician) The emergency room diagnosed "croup" - he was given an oral dose of a steroid, and sent home. The next day, the breathing was better, and by monday it was all but gone. Tuesday, Wednesday, Thursday, he was fine. Friday, the stridor breathing started to return. By Saturday it was more pronounced, and Sunday morning we had a full breathing "episode". He started crying about something (not picking up his clothes or getting dressed - can't remember, doesn't matter...), and got himself worked up to the point he couldn't breath. His lips turned blue, and he was sucking air as hard as he could. Needless to say we were terrified. He started calming down, and breathing easier as we rushed him to the hospital. I called ahead to our pediatrician's office, to tell them we were on our way to the emergency room, and they had us come to their office (same hospital, different building) instead. He was breathing "loudly" with the stridor, but was not blue and not struggling for breath at this point, so we went up to his pediatricians office. They gave him two different nebulizer treatments, and a steroid shot, and then after 1 1/2 hours, with no marked improvement, they sent us back to the emergency room for an X-Ray and further treatment. He received another nebulizer treatment there, and was just so cooperative with the X-Ray staff - he's such a good boy! When the X-Ray was reviewed by the Emergency Room doctor, he told us that Alex's Thymus Gland (right under the breastbone, between the lungs) was quite enlarged, and that we needed to follow up with his Pediatrician in the morning.
Needless to say, when we got home, I immediately went online to see what I could find out about an enlarged Thymus (none of it was good). Eric and I had a hard time sleeping that night, and at 8:30 the next morning, I called Alex's pediatrician, to make an appointment to come in and talk about the X-Ray. The doctor finally was able to get a Radiologist to confirm that the "mass" in Alex's chest was not within normal range, and at 4pm, we were told to get to Doerenbecher Children's Hospital Emergency Room right away, and get a CT scan. We called my mom, and she rushed over to watch Tessa-Lynn while we went to Doerenbecher. The ER staff was great - and gave Alex a stuffed animal. Alex was so brave while they put in the IV in his arm, and was scared, but stayed real still while they did the CT scan.
Unfortunately, the CT scan confirmed that there was a large mass in his chest on his Thymus, and the preliminary diagnosis was either Lymphoma or Leukemia. Leukemia would be cancer of the bone marrow, while Lymphoma was cancer of the lymphatic system. The big question then became "if it is Lymphoma, has it spread to his bone marrow and spinal fluid?". More tests were needed to answer that question.
Needless to say, Eric and I were devastated, and Alex had to wipe the tears off my face as he asked me why we were crying. We were transferred to the pediatric ICU for the night, and everyone there was so supportive, and Alex got Thomas the Train sets, cars, bubbles, playdoh, more stuffed animals, coloring books, crayons, etc. They also had a red wagon, that we could hook Alex's monitoring equipment to, and give Alex a ride around the unit. The hardest part at ICU was that Alex was not allowed to eat or drink until they did the Lymph node biopsy, Bone Marrow Aspiration, and Spinal Tap - which didn't happen until almost 3pm the next day. We watched a bunch of movies, and just hung out until the procedure.
I cannot tell you how terrible it is to see your child attached to so many wires - I know some of you may have experienced it, and know what I mean. Alex took it in stride, although he did ask us many times to go home and play with his friends.
We have been real open and honest with him about this, and he is now just walking the halls with his IV pole, like it was normal. What a trooper!
We received preliminary results last night that there were no signs of cancer in his bone marrow and spinal fluid - final results for these and the biopsy are due back either tonight or tomorrow morning - but from all indications, it's Non-Hodgkin's T-Cell Lymphoma. It's great news that it hasn't spread into the bone marrow or spinal fluid!
We sure have a lot of learning to do over these next two years - more than I ever wanted to know about cancer. One statistic struck me - the instance of the cancer has increased over 90% between 1973 and 1991, and there is no known cause at this point. We could rack our brains, and be filled with guilt about what we could have done, but the answer is that we don't know, and we need to focus our energy on getting him better. The rate of Lymphoma in people under 65 is 8.5 in every 100,000 people.
Alex started with Chemotherapy today - with some real strong steroids which "melt" the mass. Then the next medications will hopefully stop the production of new cancer cells. T-Cell Lymphomas have about an 80% complete cure rate after first treatment with no recurrence. We are really encouraged with how healthy Alex has always been that his body will fight off this cancer attack successfully!
The resources available to us are amazing - from "Chemo buddies" (volunteers who stick with Alex through the whole process), to a "caring cabin" at the beach, where up to 12 family members can go for 4 days to "get away" from everything. I'm looking at a bingo card right now, and cookies that have been placed in our room - and the Music Therapist just came by to see if Alex wanted to play with some instruments. The playroom up here is great - and they even have a couple of bikes/tricycles for the kids to ride around the unit.
We are waiting to hear back from the Oncologist today, so we can sit down and hammer out our "plan of attack" - it's a long road - but we are strong, and Alex is strong - and we'll get through this with all the love and support of our friends and family. We can't tell you how much your well wishes and prayers have helped us through these first few dark hours.
Some of you may have heard that Alexander is in the hospital. I'm not sure who knows what at this point, so I am sending out an email update to everyone.
This last week has been a nightmare. Alex has been diagnosed with Lymphoma, which is a cancer of the lymphatic system (we will have confirmation on the type of Lymphoma later today - they suspect T-Cell).He is in the pediatric oncology ward here at Doerenbecher Children's Hospital in Portland (the best pediatric cancer center in the state). Everyone here has been amazingly compassionate and we have received great care. Alex will be starting Chemotherapy this morning (anytime now as I write this)
Here is a history of how we got to this point:
November 1st, Alex started breathing "weird" - he had "stridor" breathing (which sounds like really labored breathing while "inhaling"). I called the advise nurse, and was told to take him to the emergency room at Meridian Park Hospital in Tualatin (near us and his pediatrician) The emergency room diagnosed "croup" - he was given an oral dose of a steroid, and sent home. The next day, the breathing was better, and by monday it was all but gone. Tuesday, Wednesday, Thursday, he was fine. Friday, the stridor breathing started to return. By Saturday it was more pronounced, and Sunday morning we had a full breathing "episode". He started crying about something (not picking up his clothes or getting dressed - can't remember, doesn't matter...), and got himself worked up to the point he couldn't breath. His lips turned blue, and he was sucking air as hard as he could. Needless to say we were terrified. He started calming down, and breathing easier as we rushed him to the hospital. I called ahead to our pediatrician's office, to tell them we were on our way to the emergency room, and they had us come to their office (same hospital, different building) instead. He was breathing "loudly" with the stridor, but was not blue and not struggling for breath at this point, so we went up to his pediatricians office. They gave him two different nebulizer treatments, and a steroid shot, and then after 1 1/2 hours, with no marked improvement, they sent us back to the emergency room for an X-Ray and further treatment. He received another nebulizer treatment there, and was just so cooperative with the X-Ray staff - he's such a good boy! When the X-Ray was reviewed by the Emergency Room doctor, he told us that Alex's Thymus Gland (right under the breastbone, between the lungs) was quite enlarged, and that we needed to follow up with his Pediatrician in the morning.
Needless to say, when we got home, I immediately went online to see what I could find out about an enlarged Thymus (none of it was good). Eric and I had a hard time sleeping that night, and at 8:30 the next morning, I called Alex's pediatrician, to make an appointment to come in and talk about the X-Ray. The doctor finally was able to get a Radiologist to confirm that the "mass" in Alex's chest was not within normal range, and at 4pm, we were told to get to Doerenbecher Children's Hospital Emergency Room right away, and get a CT scan. We called my mom, and she rushed over to watch Tessa-Lynn while we went to Doerenbecher. The ER staff was great - and gave Alex a stuffed animal. Alex was so brave while they put in the IV in his arm, and was scared, but stayed real still while they did the CT scan.
Unfortunately, the CT scan confirmed that there was a large mass in his chest on his Thymus, and the preliminary diagnosis was either Lymphoma or Leukemia. Leukemia would be cancer of the bone marrow, while Lymphoma was cancer of the lymphatic system. The big question then became "if it is Lymphoma, has it spread to his bone marrow and spinal fluid?". More tests were needed to answer that question.
Needless to say, Eric and I were devastated, and Alex had to wipe the tears off my face as he asked me why we were crying. We were transferred to the pediatric ICU for the night, and everyone there was so supportive, and Alex got Thomas the Train sets, cars, bubbles, playdoh, more stuffed animals, coloring books, crayons, etc. They also had a red wagon, that we could hook Alex's monitoring equipment to, and give Alex a ride around the unit. The hardest part at ICU was that Alex was not allowed to eat or drink until they did the Lymph node biopsy, Bone Marrow Aspiration, and Spinal Tap - which didn't happen until almost 3pm the next day. We watched a bunch of movies, and just hung out until the procedure.
I cannot tell you how terrible it is to see your child attached to so many wires - I know some of you may have experienced it, and know what I mean. Alex took it in stride, although he did ask us many times to go home and play with his friends.
We have been real open and honest with him about this, and he is now just walking the halls with his IV pole, like it was normal. What a trooper!
We received preliminary results last night that there were no signs of cancer in his bone marrow and spinal fluid - final results for these and the biopsy are due back either tonight or tomorrow morning - but from all indications, it's Non-Hodgkin's T-Cell Lymphoma. It's great news that it hasn't spread into the bone marrow or spinal fluid!
We sure have a lot of learning to do over these next two years - more than I ever wanted to know about cancer. One statistic struck me - the instance of the cancer has increased over 90% between 1973 and 1991, and there is no known cause at this point. We could rack our brains, and be filled with guilt about what we could have done, but the answer is that we don't know, and we need to focus our energy on getting him better. The rate of Lymphoma in people under 65 is 8.5 in every 100,000 people.
Alex started with Chemotherapy today - with some real strong steroids which "melt" the mass. Then the next medications will hopefully stop the production of new cancer cells. T-Cell Lymphomas have about an 80% complete cure rate after first treatment with no recurrence. We are really encouraged with how healthy Alex has always been that his body will fight off this cancer attack successfully!
The resources available to us are amazing - from "Chemo buddies" (volunteers who stick with Alex through the whole process), to a "caring cabin" at the beach, where up to 12 family members can go for 4 days to "get away" from everything. I'm looking at a bingo card right now, and cookies that have been placed in our room - and the Music Therapist just came by to see if Alex wanted to play with some instruments. The playroom up here is great - and they even have a couple of bikes/tricycles for the kids to ride around the unit.
We are waiting to hear back from the Oncologist today, so we can sit down and hammer out our "plan of attack" - it's a long road - but we are strong, and Alex is strong - and we'll get through this with all the love and support of our friends and family. We can't tell you how much your well wishes and prayers have helped us through these first few dark hours.
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