Today was Alex's first day back at school without me "hovering" over him. He told me on the way there "Mommy, I love school" - it was great!
When we got to the class, he didn't even look back - just dove right in, and had a good time. He's back to his old self - which is bittersweet, since I know that once he starts his next round of Chemo, his energy will diminish, and my bundle of energy will be subdued for a while again.
I do know that it's just temporary - that the child I am seeing this week is his true self, and I am cherishing each of these moments as they come on this long journey.
Tuesday, January 27, 2009
Monday, January 26, 2009
A Good Weekend
Alex really enjoyed playing with his friends this weekend, and singing Happy Birthday. Birthday Parties really have a way of reminding you of the simple joys of childhood. Playing with friends, watching them open presents, eating cake and ice cream...so fun!
We only had to take the Septra medicine this weekend - he has a free week while we wait for his ANC (Absolute Neutrophil Count - the White Blood Cells that fight bacterial infection) to rise. Hopefully Friday we will be able to start the next round.
We have started giving Alex Zofran more frequently - as his GI tract is in chaos from the chemo - nausea and loose bowels are common right now - which is really frustrating for Alex since he has been completely potty trained for months now, and he really hates having accidents. We have to remind him to tell us if he had an accident. It's OK if he has one, we just need to know so we can clean him up as quickly as possible.
The other day, Eric was praising Tessa-Lynn for the horrible smell assaulting our noses. Daddy was so proud that his daughter could make such a horrendous stench (go figure...) I went to change her diaper, and it was clean - I then went into sleuth mode, and found the offending odor on the floor in the upstairs bathroom. Alex had tried to go himself, and while standing, should have been sitting (enough said...)
Tessa-Lynn, not wanting to be outdone by her older brother then decided to spit up all over me. All Eric and I could do was gag, and then laugh - it was one of those weekends!
We only had to take the Septra medicine this weekend - he has a free week while we wait for his ANC (Absolute Neutrophil Count - the White Blood Cells that fight bacterial infection) to rise. Hopefully Friday we will be able to start the next round.
We have started giving Alex Zofran more frequently - as his GI tract is in chaos from the chemo - nausea and loose bowels are common right now - which is really frustrating for Alex since he has been completely potty trained for months now, and he really hates having accidents. We have to remind him to tell us if he had an accident. It's OK if he has one, we just need to know so we can clean him up as quickly as possible.
The other day, Eric was praising Tessa-Lynn for the horrible smell assaulting our noses. Daddy was so proud that his daughter could make such a horrendous stench (go figure...) I went to change her diaper, and it was clean - I then went into sleuth mode, and found the offending odor on the floor in the upstairs bathroom. Alex had tried to go himself, and while standing, should have been sitting (enough said...)
Tessa-Lynn, not wanting to be outdone by her older brother then decided to spit up all over me. All Eric and I could do was gag, and then laugh - it was one of those weekends!
Friday, January 23, 2009
Make A Wish
Wow - Alex, Eric, Tessa-Lynn and I are all going to Disney World! We don't have dates yet, since we have to schedule his trip with his doctors - we are thinking it will be sometime in November - not sure yet - but it will be fun!
It is a 6 day trip - and we will most likely be staying at Give Kids the World right next door to Disney World. As a Make a Wish child, Alex (and family) will move to the front of every line, so we'll get to do so much! He's excited about the trip, and so are we. As I get more details, I'll let you know.
If you have ever debated on which charity to send your money - Make A Wish foundation is FANTASTIC - although, I hope NONE of our family and friends ever have the opportunity to qualify for it...
It is a 6 day trip - and we will most likely be staying at Give Kids the World right next door to Disney World. As a Make a Wish child, Alex (and family) will move to the front of every line, so we'll get to do so much! He's excited about the trip, and so are we. As I get more details, I'll let you know.
If you have ever debated on which charity to send your money - Make A Wish foundation is FANTASTIC - although, I hope NONE of our family and friends ever have the opportunity to qualify for it...
Nausea
The Chemo he received last week is starting to affect his GI tract. Without going into much detail, he threw up a few times yesterday, and couldn't make it to the bathroom in time a few times too... it's a normal part of the process, and we have anti-nausea medicine we are giving him at times. No fever, and he's got energy today...so, we'll run some errands today to pass the time until the Make A Wish people arrive at 3:30 today to interview Alex for his wish...amazing!
Our neighbor, Rose dropped off some food for us last night - we have just been surrounded by generosity and concern over our son and our family - I can't begin to thank all of you enough!
Our neighbor, Rose dropped off some food for us last night - we have just been surrounded by generosity and concern over our son and our family - I can't begin to thank all of you enough!
Thursday, January 22, 2009
Arg!
Murphy's Law hits again. I was all prepared for a long day at the clinic so Alex could start his next Chemo - guess what? His ANC is down to 300 - so, no new Chemo until his count gets to at least 750.
So, we left the clinic much earlier than expected, and headed for home. We decided to swing by his school, since there was still an hour left in class, and he wanted to see his friends. He was really shy and wanted to be held the whole time, but he went - and that is what matters.
We will try his next Chemo on 1/30 - so hopefully he can go to school both on Tuesday and Thursday next week.
So, we are back at home now, getting ready for nap time...
So, we left the clinic much earlier than expected, and headed for home. We decided to swing by his school, since there was still an hour left in class, and he wanted to see his friends. He was really shy and wanted to be held the whole time, but he went - and that is what matters.
We will try his next Chemo on 1/30 - so hopefully he can go to school both on Tuesday and Thursday next week.
So, we are back at home now, getting ready for nap time...
Wednesday, January 21, 2009
ANC's up to 500
Whew! Alex is cleared to go to the basketball game with Eric tonight - with his ANC's climbing - we'll be able to start the next round of Chemo tomorrow. It's a long day - so no school :(
We go in tomorrow at 9am to start hydrating - he needs to be hydrated for a few hours, and then the Cytoxan is administered over 1/2 hour, then he needs another few hours of hydration before he can go home. I'm bringing lots of books, and his little laptop and Leapster game system - anything to keep him engaged while he is stuck to the IV pole.
Grandma Diana will watch Tessa-Lynn while we are at the hospital for most of the day - I certainly don't know how we could do this without all the help from our family and friends!
We have this *huge* spreadsheet for all the medical bills from 2008 - it literally took me about 10 hours to get everything entered just to see what the insurance company paid correctly, and what needs to be re-submitted. Every time I get overwhelmed with all of it, I just remember, that we are lucky to have insurance!
We go in tomorrow at 9am to start hydrating - he needs to be hydrated for a few hours, and then the Cytoxan is administered over 1/2 hour, then he needs another few hours of hydration before he can go home. I'm bringing lots of books, and his little laptop and Leapster game system - anything to keep him engaged while he is stuck to the IV pole.
Grandma Diana will watch Tessa-Lynn while we are at the hospital for most of the day - I certainly don't know how we could do this without all the help from our family and friends!
We have this *huge* spreadsheet for all the medical bills from 2008 - it literally took me about 10 hours to get everything entered just to see what the insurance company paid correctly, and what needs to be re-submitted. Every time I get overwhelmed with all of it, I just remember, that we are lucky to have insurance!
Sunday, January 18, 2009
Home Sweet Home - and a fever scare
Home - what a great word - what a great place.
We enjoyed staying close to home yesterday - only venturing out to get the oil changed in the car.
Later, Mom and Bob brought over dinner (yummy!), and we hung out playing the Wii. We noticed Alex didn't eat very much, and lo and behold - a fever - again.
We took Alex's temperature probably two dozen times with three different thremometers over the next hour, as we contacted the Doctor to see if we needed to back to the Emergency Department (ED) since his ANC was only 33 the day before. Luckily, Alex's fever stayed just about at the tipping point, and the Doctor said we could stay at home. This morning, the fever is gone. - Whew!
Today, we ventured out to get the car washed, and played with Alex's new kite out front. No fever still - we are in the clear for another night!
As Eric said last night - we had one more night at home, and are one day closer to his cure!
We enjoyed staying close to home yesterday - only venturing out to get the oil changed in the car.
Later, Mom and Bob brought over dinner (yummy!), and we hung out playing the Wii. We noticed Alex didn't eat very much, and lo and behold - a fever - again.
We took Alex's temperature probably two dozen times with three different thremometers over the next hour, as we contacted the Doctor to see if we needed to back to the Emergency Department (ED) since his ANC was only 33 the day before. Luckily, Alex's fever stayed just about at the tipping point, and the Doctor said we could stay at home. This morning, the fever is gone. - Whew!
Today, we ventured out to get the car washed, and played with Alex's new kite out front. No fever still - we are in the clear for another night!
As Eric said last night - we had one more night at home, and are one day closer to his cure!
Friday, January 16, 2009
Home at Last!
We are home - finally...Alex is napping and Tessa-Lynn is napping over at my Mom's house. When she wakes up my Mom will bring her back here - it's nice to have our family back in one place again!
Thank you all for your well wishes and prayers - he needs to be really cautious the next few days until his counts go up (no school on Tuesday), but hopefully, we'll get back into a routine again real soon!
Thank you all for your well wishes and prayers - he needs to be really cautious the next few days until his counts go up (no school on Tuesday), but hopefully, we'll get back into a routine again real soon!
ANC Up to 33 - we're going home
The paperwork is started to send us home today! We'll have another blood test on Tuesday to see if they will be moving forward with Chemo on Thursday.
Yippy!
Yippy!
More Chemo Part 2
Yesterday morning, after we found out that Alex's counts were so low, we steeled ourselves for a tough day stuck in the room.
At 8am, breakfast came, but not as much as we had ordered (we wanted to stuff him full since he couldn't eat after 9am). Alex "really" wanted eggs, and they brought just the pancake. I talked to the nurse about keeping an eye on Alex so I could go down to the caffeteria and get Alex more food (2 elevator rides away). Then, I remembered that Eric had my wallet, and he wasn't back yet - ugh. Our nurse reminded me that we didn't have to pay for Alex's food, and gave me a sticker to give to the caffeteria. It was now 8:20. I rushed down to the caffeteria, and waited 10 minutes for the food (paperwork, paperwork, paperwork), then rushed back up to the room. It was now 8:45. I told Alex to eat as much as he could - and he did - he inhaled the eggs, and milk, and grape juice. At 9:05, he said he was done, and I took the plates of food away.
Eric arrived a few minutes later, after Grandma arrived at our house to watch Tessa-Lynn for the day. I went to go get my food down in the caffeteria, and wouldn't you know it, there was the extra food I had ordered Alex - it arrived at 9:00, so they didn't bring it in the room. It was sitting on a shelf right outside the door. So, I ate that breakfast, and all was right with the world for a few minutes.
We watched movies, and Alex took a nap. A massage therapist came in and gave me and Eric a 15 minute chair massage - yay! Funny, she said my upper back muscles were really tense - I wonder why?!?...
At 3pm, we took Alex to the procedure room, and the doctors did the LP. The doctors said they think Alex's numbers might fall again today - we can't go home until they start rebounding.
After the LP, Eric carried Alex back to the room, where he proceded to fall apart. He cried for about an hour - We think everything just caught up with him. Being stuck in the room, not playing with his friends, missing school, and not even being able to go to the playroom. It was awful.
Alex fell asleep from sheer exhaustion after that. Eric encouraged me to go home and play with Tessa-Lynn for the night, and sleep in our bed. It really helped. Seeing Tessa-Lynn's big grin when I walked through the door really helped. She is such a jolly baby girl, and brings such joy to everyone she sees.
She is still asleep, sort of snoring/moaning - it's such a sweet sound! After she wakes up, I'm going to run a few errands with her, and then bring her to Grandma Diana's house for the day.
Eric just called, and the lab numbers aren't back yet, so we don't know if his ANC went up or down - we'll let you know!
At 8am, breakfast came, but not as much as we had ordered (we wanted to stuff him full since he couldn't eat after 9am). Alex "really" wanted eggs, and they brought just the pancake. I talked to the nurse about keeping an eye on Alex so I could go down to the caffeteria and get Alex more food (2 elevator rides away). Then, I remembered that Eric had my wallet, and he wasn't back yet - ugh. Our nurse reminded me that we didn't have to pay for Alex's food, and gave me a sticker to give to the caffeteria. It was now 8:20. I rushed down to the caffeteria, and waited 10 minutes for the food (paperwork, paperwork, paperwork), then rushed back up to the room. It was now 8:45. I told Alex to eat as much as he could - and he did - he inhaled the eggs, and milk, and grape juice. At 9:05, he said he was done, and I took the plates of food away.
Eric arrived a few minutes later, after Grandma arrived at our house to watch Tessa-Lynn for the day. I went to go get my food down in the caffeteria, and wouldn't you know it, there was the extra food I had ordered Alex - it arrived at 9:00, so they didn't bring it in the room. It was sitting on a shelf right outside the door. So, I ate that breakfast, and all was right with the world for a few minutes.
We watched movies, and Alex took a nap. A massage therapist came in and gave me and Eric a 15 minute chair massage - yay! Funny, she said my upper back muscles were really tense - I wonder why?!?...
At 3pm, we took Alex to the procedure room, and the doctors did the LP. The doctors said they think Alex's numbers might fall again today - we can't go home until they start rebounding.
After the LP, Eric carried Alex back to the room, where he proceded to fall apart. He cried for about an hour - We think everything just caught up with him. Being stuck in the room, not playing with his friends, missing school, and not even being able to go to the playroom. It was awful.
Alex fell asleep from sheer exhaustion after that. Eric encouraged me to go home and play with Tessa-Lynn for the night, and sleep in our bed. It really helped. Seeing Tessa-Lynn's big grin when I walked through the door really helped. She is such a jolly baby girl, and brings such joy to everyone she sees.
She is still asleep, sort of snoring/moaning - it's such a sweet sound! After she wakes up, I'm going to run a few errands with her, and then bring her to Grandma Diana's house for the day.
Eric just called, and the lab numbers aren't back yet, so we don't know if his ANC went up or down - we'll let you know!
Thursday, January 15, 2009
ANC Down to 16
Not zero yet - we are waiting for the doctors to tell us if his counts look like they are going to rebound, or continue down to zero. So, we're stuck in the room today, with the door closed...every sneeze, or runny nose is a concern - come on white blood cells - kick in!
Quiet Night
Eric was at home with Tessa-Lynn last night (watching Bill and Ted's Excellent Adventure - she giggled a lot). So, it was just me and Alex here at the hospital.
Alex didn't eat a whole lot of dinner - but an hour later scarfed down over 1/2 a bag of microwave popcorn (is there no better smell in the whole world?) - I helped him with the other half.
Then, his night nurse came in with Orange Gatorade (at 8:15!!!!), and an Orange Popsicle - I guess she thought if she had to be awake, so did her patients! Alex ate the whole Popsicle in seconds flat, and then proceeded to bounce off the walls for the next hour. He finally fell asleep (or I lost consciousness) at 9:45pm
He slept though the night, and didn't even move when the nurse came in to hook him up to the IV for his anti-biotic (just precautionary).
It's 7:30, and he is still asleep - I'm going to go grab some coffee. Eric should be back here about 9am...
Alex didn't eat a whole lot of dinner - but an hour later scarfed down over 1/2 a bag of microwave popcorn (is there no better smell in the whole world?) - I helped him with the other half.
Then, his night nurse came in with Orange Gatorade (at 8:15!!!!), and an Orange Popsicle - I guess she thought if she had to be awake, so did her patients! Alex ate the whole Popsicle in seconds flat, and then proceeded to bounce off the walls for the next hour. He finally fell asleep (or I lost consciousness) at 9:45pm
He slept though the night, and didn't even move when the nurse came in to hook him up to the IV for his anti-biotic (just precautionary).
It's 7:30, and he is still asleep - I'm going to go grab some coffee. Eric should be back here about 9am...
Wednesday, January 14, 2009
More Chemo Tomorrow
The doctors are moving forward with Alex's Chemo tomorrow. Part of me is relieved that his situation isn't so critical that it stops his treatment. Part of me is terrified of moving forward with his counts expecting to drop to zero tomorrow.
Since it is another Lumbar Puncture (LP), he won't be able to eat after 9am. So...we'll be stuck in a 100 sq. ft. room with an almost 4 year old with low blood sugar tomorrow afternoon - yippy!!!!! (insert sarcasm here)
I realize that these posts have been quite a downer, but this blog is great therapy for me, and after typing and posting these entries, I usually feel better. I guess what I am trying to say, is that Eric and I aren't wallowing in self-pity and depression. Our son is in great hands, and he is strong and will beat this cancer!
Since it is another Lumbar Puncture (LP), he won't be able to eat after 9am. So...we'll be stuck in a 100 sq. ft. room with an almost 4 year old with low blood sugar tomorrow afternoon - yippy!!!!! (insert sarcasm here)
I realize that these posts have been quite a downer, but this blog is great therapy for me, and after typing and posting these entries, I usually feel better. I guess what I am trying to say, is that Eric and I aren't wallowing in self-pity and depression. Our son is in great hands, and he is strong and will beat this cancer!
Triple Drat!
Alex's numbers are plummeting - probably down to zero - which means *zero* ability to fight off infection...so, we are stuck in his room of about 100 square feet until his counts start to come up - that might not be until Friday...
Taylor, Alex's Chemo Buddy came by for a while today - they built a sailboat (well, Alex's version of a sail boat), and painted it, and glued it while Eric and I went down to the cafeteria to eat lunch.
We played Hospital Bingo, and Alex got to call in and say "Bingo" on the TV - twice! When the prize cart came around, he picked out a die-cast X-Wing Fighter from Star Wars - that was a hit!
Eric is going home this afternoon to give Tessa-Lynn some Daddy time - we both miss her so much- and he'll be back tomorrow with more clothes for us (we packed for a hospital visit - but not for this many days). Because Alex is so neutropenic, we can't have visitors - it sucks...Hopefully tomorrow, I can take a trip down the hill to spend some time with Tessa-Lynn too. Mom says Tessa-Lynn is practicing crawling backwards today - so cute!
Once the doctors see his counts rebounding and he stays free of a fever, we'll be able to go home - I'll let you all know as soon as we do!
Taylor, Alex's Chemo Buddy came by for a while today - they built a sailboat (well, Alex's version of a sail boat), and painted it, and glued it while Eric and I went down to the cafeteria to eat lunch.
We played Hospital Bingo, and Alex got to call in and say "Bingo" on the TV - twice! When the prize cart came around, he picked out a die-cast X-Wing Fighter from Star Wars - that was a hit!
Eric is going home this afternoon to give Tessa-Lynn some Daddy time - we both miss her so much- and he'll be back tomorrow with more clothes for us (we packed for a hospital visit - but not for this many days). Because Alex is so neutropenic, we can't have visitors - it sucks...Hopefully tomorrow, I can take a trip down the hill to spend some time with Tessa-Lynn too. Mom says Tessa-Lynn is practicing crawling backwards today - so cute!
Once the doctors see his counts rebounding and he stays free of a fever, we'll be able to go home - I'll let you all know as soon as we do!
Drat & Double Drat!
His ANC is 60 - yep - SIXTY - he's confined to his room - drat & double drat.
Now we wait for rounds to talk to the doctor to see about a transfusion, and when he can go home, and if tomorrow's scheduled Chemo treatment needs to be put off a week...
The morning nurse is contacting the Volunteers to see about bringing activities into the room for him to do today - it's going to be a long day...
Now we wait for rounds to talk to the doctor to see about a transfusion, and when he can go home, and if tomorrow's scheduled Chemo treatment needs to be put off a week...
The morning nurse is contacting the Volunteers to see about bringing activities into the room for him to do today - it's going to be a long day...
Morning Thoughts from the Hospital
Yesterday, while Alex was napping in his room, Eric and I went to a Parent Support group meeting here at the hospital. Wow...we are just at the beginning of this process, and we were really able to re-frame our situation. Some of the parents there were dealing with terminal children - others with brain tumors, and 6 months of hospital stay. It doesn't diminish our pain of watching Alex go through this, it just reminds us that we all have our trials, and we are not alone in this struggle to cure cancer.
He's sleeping right now - the nurse just finished administering his antibiotics. She already drew his blood for his labs. I'm just waiting to hear what his ANC and blood count numbers are. If his ANC drops below 500 (it was 600 yesterday), he may have to wear a mask to leave his room, or if the number is too low, he might be quarantined to his room - ugh (insert word of your choice here). His white blood cell number went down to 1.0 from 1.3 yesterday (normal healthy is 4.5-10). His hematocrit and hemoglobin numbers are down too - so we may be in for another transfusion today. Unfortunately, this transfusion would be done while Alex is awake, so he will have to be hooked up to the dreaded IV pole for hours - double ugh.
As soon as the CBC (Complete Blood Count) is complete, I'll update the blog. As long as he doesn't spike a fever, the results of the CBC will determine when we get to go home.
He's sleeping right now - the nurse just finished administering his antibiotics. She already drew his blood for his labs. I'm just waiting to hear what his ANC and blood count numbers are. If his ANC drops below 500 (it was 600 yesterday), he may have to wear a mask to leave his room, or if the number is too low, he might be quarantined to his room - ugh (insert word of your choice here). His white blood cell number went down to 1.0 from 1.3 yesterday (normal healthy is 4.5-10). His hematocrit and hemoglobin numbers are down too - so we may be in for another transfusion today. Unfortunately, this transfusion would be done while Alex is awake, so he will have to be hooked up to the dreaded IV pole for hours - double ugh.
As soon as the CBC (Complete Blood Count) is complete, I'll update the blog. As long as he doesn't spike a fever, the results of the CBC will determine when we get to go home.
Tuesday, January 13, 2009
Another Day at the Hospital
We just met with the doctor.
Alex's ANC counts are continuing to drop (now down to 600). His Platelets are up from 13 last night to 14 today - normal is about 30. If his counts keep dropping, he'll have another transfusion tomorrow with Platelets, and possibly more whole blood (thanks to all of you who donate blood and/or platelets!)
So, we are stuck here until Alex is free of fever for 48 hours...I asked what defined a fever - they said over 100.1 - it was just 99.9...ugh - let's all hope it does not rise anymore!
Alex's ANC counts are continuing to drop (now down to 600). His Platelets are up from 13 last night to 14 today - normal is about 30. If his counts keep dropping, he'll have another transfusion tomorrow with Platelets, and possibly more whole blood (thanks to all of you who donate blood and/or platelets!)
So, we are stuck here until Alex is free of fever for 48 hours...I asked what defined a fever - they said over 100.1 - it was just 99.9...ugh - let's all hope it does not rise anymore!
Serious Deja Vu
Our room was ready about 11:45pm. The nurse brought a wheelchair, and I sat down with a sleeping Alex in my lap for the ride up to 10 South.
When we wheeled through the door, we went right back to room 1 - the same room we were in when Alex was diagnosed.
Alex woke up, and said "This is the room with the icky medicine?!?!" Ugh...
After about an hour of getting him hooked up, weighed, measured, etc. we were able to get a few hours of sleep (interrupted many times with the nurses checking on Alex and starting his blood transfusion (O+).
At 5:30 this morning, Alex had to go to the bathroom, and we've been up ever since. He is watching Disney Channel and Eric and I took out our laptops. The nurse stopped Alex's transfusion for 15 minutes, while they gave him another dose of Tylenol. She just took his temperature, and it's at 99.6.
I sure hope we get to come home today...
When we wheeled through the door, we went right back to room 1 - the same room we were in when Alex was diagnosed.
Alex woke up, and said "This is the room with the icky medicine?!?!" Ugh...
After about an hour of getting him hooked up, weighed, measured, etc. we were able to get a few hours of sleep (interrupted many times with the nurses checking on Alex and starting his blood transfusion (O+).
At 5:30 this morning, Alex had to go to the bathroom, and we've been up ever since. He is watching Disney Channel and Eric and I took out our laptops. The nurse stopped Alex's transfusion for 15 minutes, while they gave him another dose of Tylenol. She just took his temperature, and it's at 99.6.
I sure hope we get to come home today...
Monday, January 12, 2009
Back to the Hospital
Alrighty...we are back at the ED tonight - Alex is getting admitted...
This morning was great - no fever! Then...we were about to go to a Leukemia and Lymphoma Society Support Group meeting, and Eric took Alex's temperature - guess what??? 100.4...so we called the doctor, and were told to come in.
We dropped Tessa-Lynn off at my Mom's house, and headed back up the hill.
Alex was dehydrated (he wouldn't drink much - I WAS trying), and his counts have dropped a lot since Friday. His ANC went from 6200 to 1300, and is dropping...his platelet counts and red blood cell count are low too, so they are going to do a blood and platelet transfusion (about 1am or so). We have a bed in room 1 in 10 South, which will be available at 11:30 tonight.
Hopefully, his numbers will look better in the morning, and we'll be discharged - but we won't be sure until tomorrow...
So, no school for Alex tomorrow - so frustrating! I was so excited to see him back with his friends. I know this is part of the "new normal" - but it stinks...no, it doesn't stink - it sucks - Cancer Sucks!
This morning was great - no fever! Then...we were about to go to a Leukemia and Lymphoma Society Support Group meeting, and Eric took Alex's temperature - guess what??? 100.4...so we called the doctor, and were told to come in.
We dropped Tessa-Lynn off at my Mom's house, and headed back up the hill.
Alex was dehydrated (he wouldn't drink much - I WAS trying), and his counts have dropped a lot since Friday. His ANC went from 6200 to 1300, and is dropping...his platelet counts and red blood cell count are low too, so they are going to do a blood and platelet transfusion (about 1am or so). We have a bed in room 1 in 10 South, which will be available at 11:30 tonight.
Hopefully, his numbers will look better in the morning, and we'll be discharged - but we won't be sure until tomorrow...
So, no school for Alex tomorrow - so frustrating! I was so excited to see him back with his friends. I know this is part of the "new normal" - but it stinks...no, it doesn't stink - it sucks - Cancer Sucks!
Sunday, January 11, 2009
The Fever Returns
Ugh - 101.4... but the doctor said the blood cultures are still negative (they can take up to 48 hours to show bacteria growth), and unless the blood cultures turn positive in the next 3 hours, we'll just treat with Tylenol - and call them tomorrow if the fever is still there.
The amazing ED doctor had his nurse call and follow up with us today - wanting to make sure we were doing OK - so great to know we are in great hands!
The amazing ED doctor had his nurse call and follow up with us today - wanting to make sure we were doing OK - so great to know we are in great hands!
Saturday, January 10, 2009
Fever Update #3
His fever spiked again, but the doctor said to give him another dose of Tylenol at 8:30pm, and again at 2:30am - and call again if he still has a fever in the morning - his counts were really high - so I guess that's why we are in a "holding pattern"...
Stay tuned...
Stay tuned...
Fever Update #2
We took his temperature again at 2:30 - it was 103.6 - ugh - another call to the on-call doctor.
He said they are still waiting on the blood cultures to come back, and to give him another dose of Tylenol. If he gets worse, or still has a fever at about 8:30pm, to call back - and we'll be heading back to the ED...
Stay tuned!
He said they are still waiting on the blood cultures to come back, and to give him another dose of Tylenol. If he gets worse, or still has a fever at about 8:30pm, to call back - and we'll be heading back to the ED...
Stay tuned!
Fever Update
Alex slept through the night, and woke up at about 7:30 this morning. He was warm to the touch and shaky. I took his temperature, and it was 101.6 - ugh...
I called the doctor, and they said to try one more dose of Tylenol - and check his fever again after 6 hours (once the Tylenol has worn off). If he still has a fever at that time, they *may* want him to come in again - since the antibiotics they gave him last night in the ED only last 24 hours...
So, we are just watching, and hoping his body can fight off this fever, so we don't have to go to the ED again tonight...
I called the doctor, and they said to try one more dose of Tylenol - and check his fever again after 6 hours (once the Tylenol has worn off). If he still has a fever at that time, they *may* want him to come in again - since the antibiotics they gave him last night in the ED only last 24 hours...
So, we are just watching, and hoping his body can fight off this fever, so we don't have to go to the ED again tonight...
Friday, January 9, 2009
A Trip to the Emergency Department
Today Alex, Tessa and I went for a walk - OK - I walked, they were riding in the Red Waggon I was pulling up and down the hills of our neighborhood. We did a little shopping, and had lunch. It was a nice day - and both of the kids napped in the afternoon, which was nice! (My legs were killing me, after pulling 60+ lbs up the hill to our house)
When Eric got home, and woke Alex up, he noticed Alex felt warm. We took a temperature, and sure enough, he had a fever of 99.4. We waited 15 minutes, and took it again - this time it was 99.8. We ate a quick meal of spaghetti, and took his temperature again, and it hit the magic number 100.4. I called Doerenbecher, and they said to bring him in. We packed up some clothes, and Tessa, and headed over to my mom's house so they could watch Tessa while we went to the ED.
Alex was *not* happy about this - who can blame him!. We literally walked right in, gave our name, and as quickly as they could get a wrist band on him, we were ushered into a room. There was a swarm of nurses ready to access his Port (I'm glad we thought to put the numbing cream on before we left). They all commented on how good he was while they were working on him - he's so brave!
Then, we waited to find out the counts - if they were low, he would get admitted. About 45 minutes later, our favorite ED doctor informed us that his counts were at 6700 - excellent counts. His body was effectively fighting off whatever he had. Over the next 30 minutes, he received some antibiotics, and some Tylenol. The, the nurses deactivated his Port. We had a quick scare that they would keep us longer, when his vitals were checked one more time, and his temperature was up to 101.6. The doctor said not to worry - with his counts being so high - he was safe to go home. Whew!
We have to watch his temperature tomorrow, and if it doesn't come down, we may have to go back again (I really hope not), and get his counts checked again - they can plummet at any time.
But for now, we are home, Alex is asleep in his own bed, and we'll pick up sweet Tessa-Lynn in the morning.
We are so amazed at how streamlined everything is at Doerenbecher. We really feel that we are cared about here - we are not just a number. Our great doctor in the ED said he was actually talking about Alex today (one of his interns was actually doing a rotation in sedation, and watched Alex's procedure yesterday). We are in the best possible hands here, and our Alex is going to make a full recovery with the help of all of the great people surrounding us right now.
It's good to be home...good night!
When Eric got home, and woke Alex up, he noticed Alex felt warm. We took a temperature, and sure enough, he had a fever of 99.4. We waited 15 minutes, and took it again - this time it was 99.8. We ate a quick meal of spaghetti, and took his temperature again, and it hit the magic number 100.4. I called Doerenbecher, and they said to bring him in. We packed up some clothes, and Tessa, and headed over to my mom's house so they could watch Tessa while we went to the ED.
Alex was *not* happy about this - who can blame him!. We literally walked right in, gave our name, and as quickly as they could get a wrist band on him, we were ushered into a room. There was a swarm of nurses ready to access his Port (I'm glad we thought to put the numbing cream on before we left). They all commented on how good he was while they were working on him - he's so brave!
Then, we waited to find out the counts - if they were low, he would get admitted. About 45 minutes later, our favorite ED doctor informed us that his counts were at 6700 - excellent counts. His body was effectively fighting off whatever he had. Over the next 30 minutes, he received some antibiotics, and some Tylenol. The, the nurses deactivated his Port. We had a quick scare that they would keep us longer, when his vitals were checked one more time, and his temperature was up to 101.6. The doctor said not to worry - with his counts being so high - he was safe to go home. Whew!
We have to watch his temperature tomorrow, and if it doesn't come down, we may have to go back again (I really hope not), and get his counts checked again - they can plummet at any time.
But for now, we are home, Alex is asleep in his own bed, and we'll pick up sweet Tessa-Lynn in the morning.
We are so amazed at how streamlined everything is at Doerenbecher. We really feel that we are cared about here - we are not just a number. Our great doctor in the ED said he was actually talking about Alex today (one of his interns was actually doing a rotation in sedation, and watched Alex's procedure yesterday). We are in the best possible hands here, and our Alex is going to make a full recovery with the help of all of the great people surrounding us right now.
It's good to be home...good night!
Meeting Alex's Chemo Pal
Yesterday, I woke up with a feeling of dread and excitement.
Dread, because Alex had a lumbar puncture at 3pm, which meant he couldn't eat anything after 9am, and his appetite has *really* reduced lately. I was afraid I wasn't going to get enough food in him for breakfast to hold him over until 3:30, when he could finally eat.
Excitement, because Alex was going to school again, and he was going to meet his Chemo Pal for the first time (a volunteer who commits to being Alex's pal for the duration of his treatment).
Well, Alex wasn't hungry at breakfast - he had about 1/3 of an apple, and a few bites of Cheerios - I offered pancakes, waffles, eggs, sausage, you name it - he didn't want it...ugh!
School was good, although a few of the kids kept commenting on his lack of hair - I don't know if Alex heard it or not. I'm sure I'm overreacting but I worry about other kids acting differently around him...I hope over time, he'll just be one of the kids again...
I was in the classroom again, and took pictures of the class, and watched Alex (to make sure he didn't eat anything). After class, we headed up to the Hospital. Alex was really upset that he couldn't eat anything, but was soon distracted by a trip up the hill in the tram.
We met Alex's new Chemo Pal, Taylor. She is really sweet, and Alex warmed up to her pretty quick. She plays the Wii also, so Alex thought that was cool
Once Alex's name was called, he turned into a grumpy-pants again - and did his weight and height and vitals while sulking. He even climbed under the table when the nurse came in to access his Port. While trying to get him out from under the bed, I climbed under the bed, and got stuck - Taylor, the nurse and my laughing broke the tension in the room, and Alex sat on my lap on the floor, and the nurse was able access the Port. After that was done, and we were waiting for his blood counts, and the doctor, we played games (blowing up nursing gloves to make Turkey balloons), and taking a trip to the toy box for some silly puddy. Alex showed Taylor the playroom, and then how to play a video game.
The nurse gave him his Vincristine into his Port while Taylor and Alex played. He wasn't too happy to go to the procedure room, so I carried him in, with Taylor following us. She watched as Alex was given the "sleepy milk", and then Taylor and I went back to our room to wait.
While the doctors were doing the LP of Methotrexate, they also did the two shots of Asparaganaise in his thighs, so he wouldn't have to be awake for it. We were told to come back to the procedure room, and Alex slept for 1 1/2 hours. Taylor was there the whole time - it was great. Finally, he woke up, and we headed back to the tram. Alex didn't want to eat anything except McDonald's (how can I say no, after not having any food all day). Alex agreed that it would be good to meet with Taylor again - she's going to try and find more "Cars" and "Star Wars" stuff to bring along with the Thomas the train stuff she brought this time.
Eric and I are just thrilled with the support that we have received from the Children's Cancer Association, and *all* of the staff and volunteers at Doerenbecher. It's nice to know Alex will have a new friend who will be "safe" - no pokes, no medicine, just play.
His counts were great - his ANC was 2700 - and no sign of a fever - he's doing great!
Tuesday, January 6, 2009
First Day Back At School
Yippy!
Alex went back to school today! I stayed in the classroom with him just to make sure that the transition was smooth. I really didn't have anything to worry about. Alex was thrilled to be back at school, and jumped back in like he had never left.
After a great day, on the way home he said "I'm not sick anymore, I get to go to school!" - ugh...a knife through my heart. I told him that he is well enough to go back to school, but that we still had a lot of medicine and doctors appointments to take care of before he was all better.
We finished his second round of Cyterabine last night, and deactivated his port, so when he went to school today, he didn't have any tubes hanging out.
Last night he told *us* what medication he needed to take. "Oh, I need the Zohfahn (Zofran), and the Mercaptahpurn (Mercaptapurine), the Cytabean (Cyterabine) and the Heprain Flush?" He is really getting good at letting us give him his medication. The Zofran is in a syringe, the Mercaptapurine is a crushed tablet in the mango sherbet (I need to find more of it - we are almost out!), and the Cyterabine is in his port.
I was going to post an entry last night called "the goof ball returneth" - but I was too busy hula-hooping, running, bowling, snowboarding, and driving on our Wii game system with Alex and Eric. Tessa was our cheerleader, and was busy walking along all the furniture. Alex has returned to his goofy self. I'm sure it's a combination of getting used to the "new normal", and getting back to some type of routine - including school! It's nice to have him back!
We are watching him closely, since his counts are low, and Tessa-Lynn had a fever a few days ago. The doctors told us not to be surprised if he got a fever, and had to be admitted. She thought it would be a good idea to have our bags packed "just in case". So far, no fever... She also told us about 1% of children who get multiple doses of Methotrexate in the spinal fluid, can have seizures, or stroke-like symptoms (weakness on one side, slurred speech) - that is temporary, but needs to be addressed right away. I forgot to ask her how long we have to watch for these symptoms - just a few days after getting the Methotrexate, or from now until...? It's on my list of questions for this Thursday's appointment.
Even with all of these possible complications, she thought it was really important for him to be back in school. She said "he can't live in a bubble for two years" - I really appreciate her "reality-driven" approach to medicine. I feel Alex is in really good hands with her.
Alex went back to school today! I stayed in the classroom with him just to make sure that the transition was smooth. I really didn't have anything to worry about. Alex was thrilled to be back at school, and jumped back in like he had never left.
After a great day, on the way home he said "I'm not sick anymore, I get to go to school!" - ugh...a knife through my heart. I told him that he is well enough to go back to school, but that we still had a lot of medicine and doctors appointments to take care of before he was all better.
We finished his second round of Cyterabine last night, and deactivated his port, so when he went to school today, he didn't have any tubes hanging out.
Last night he told *us* what medication he needed to take. "Oh, I need the Zohfahn (Zofran), and the Mercaptahpurn (Mercaptapurine), the Cytabean (Cyterabine) and the Heprain Flush?" He is really getting good at letting us give him his medication. The Zofran is in a syringe, the Mercaptapurine is a crushed tablet in the mango sherbet (I need to find more of it - we are almost out!), and the Cyterabine is in his port.
I was going to post an entry last night called "the goof ball returneth" - but I was too busy hula-hooping, running, bowling, snowboarding, and driving on our Wii game system with Alex and Eric. Tessa was our cheerleader, and was busy walking along all the furniture. Alex has returned to his goofy self. I'm sure it's a combination of getting used to the "new normal", and getting back to some type of routine - including school! It's nice to have him back!
We are watching him closely, since his counts are low, and Tessa-Lynn had a fever a few days ago. The doctors told us not to be surprised if he got a fever, and had to be admitted. She thought it would be a good idea to have our bags packed "just in case". So far, no fever... She also told us about 1% of children who get multiple doses of Methotrexate in the spinal fluid, can have seizures, or stroke-like symptoms (weakness on one side, slurred speech) - that is temporary, but needs to be addressed right away. I forgot to ask her how long we have to watch for these symptoms - just a few days after getting the Methotrexate, or from now until...? It's on my list of questions for this Thursday's appointment.
Even with all of these possible complications, she thought it was really important for him to be back in school. She said "he can't live in a bubble for two years" - I really appreciate her "reality-driven" approach to medicine. I feel Alex is in really good hands with her.
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