Luke has had an up and down day. The morning started off rough with a pretty bad headache and he wore himself out after taking a shower and changing clothes so he slept until this afternoon. After some "caffeine in a bag" through his IV his headache got a bit better and he was up and chatting for a while. The leukemia docs have exhausted all of their efforts at this point so they have called for a brain specialist (neurologist) to come in and see Luke, especially since there is a family history of migraines. Apparently this doc is the "headache guy". His CT was negative THANK YOU JESUS!! So we will see what the neurology doctor says about the headaches. Luke gets pretty disoriented at times because of all the medications he is taking to control the pain, he has been frustrated that he keeps losing days and feels a day or two behind most of the time. He was actually able to stomache some Chik Fil-A this afternoon and then fell back asleep this evening.
He has really enjyed reading all of the letters and posts online when he is awake. He has IV chemo tomorrow but they are going to hold off on the lumbar puncture for now and make it up at a later date. It seems like it is just baby steps at this point...we will continue to keep you all posted, thanks so much for all the kind words and prayers, they are much needed!
PS We are scheduling a blood drive in Luke's name that will most likely be at the end of May so remember if you are going to donate blood now you can only give every 56 days and we want EVERYONE to come out for the one in May! I will keep you updated on when that will be!
Love you all
Kendall
Tuesday, March 31, 2009
Monday, March 30, 2009
Luke - Day 4 at Spa MDA
Hey things are looking up some for Luke. Still has headache and fever issues but progress is being made. His labs are improved with white count, hemoglobin and platelets all starting to move in the direction of normal humanoid levels.
Upping his happy time meds for his headaches has helped. He will have a scan this afternoon to see if they can identify anything upstairs that could be causing his headaches.
Date of eviction is not known. He needs to hold a normal temperature for 24 hours and be off of IV pain meds. He has chemo and an LP on Wednesday. Will definitely have chemo and will likely have LP. Best case would be receipt of an eviction notice on Thursday.
Got out of bed and cleaned up and was able to eat a little - though not much. Effort wore him out so he outened the lights to take nap.
Upping his happy time meds for his headaches has helped. He will have a scan this afternoon to see if they can identify anything upstairs that could be causing his headaches.
Date of eviction is not known. He needs to hold a normal temperature for 24 hours and be off of IV pain meds. He has chemo and an LP on Wednesday. Will definitely have chemo and will likely have LP. Best case would be receipt of an eviction notice on Thursday.
Got out of bed and cleaned up and was able to eat a little - though not much. Effort wore him out so he outened the lights to take nap.
Saturday, March 28, 2009
...
Luke is sleeping the day away with the help of pain medication for his headaches. Both "the parentals" have been with him and are providing frequent updates. He has been feeling a bit better when he is up but the lumbar punctures (spinal taps) are doing a number on him and they are essentially causing alot of irritation and inflammation of the lining of his brain and spinal cord which gives him a pretty gnarly spinal headache. He spiked another temperature last night but his blood cultures are still negative at this time.
His morning labs looked a bit better with more white blood cells and greater blood levels in general after getting his blood yesterday. He has to be fever free for 24hours before they will let him come back home...so keep up the prayers FEVER FREE!!
His morning labs looked a bit better with more white blood cells and greater blood levels in general after getting his blood yesterday. He has to be fever free for 24hours before they will let him come back home...so keep up the prayers FEVER FREE!!
Asshat update March 28
Rough day. Bad headache all day and got worse in the evening. Kept the room dark and an icepack on his forehead. "Yaked" this evening. Temperature is spiking but seems to be controlled by Tylenol.
Nothing grew in Luke's blood culture in the first 24 hours. They will check it again at 48 hours. Even nothing showed up in the blood culture the doctors said his his temperature will spike until he has been on antibiotics for 48 hours, just part of dealing with the asshat.
Nothing grew in Luke's blood culture in the first 24 hours. They will check it again at 48 hours. Even nothing showed up in the blood culture the doctors said his his temperature will spike until he has been on antibiotics for 48 hours, just part of dealing with the asshat.
Friday, March 27, 2009
Hi all-
Since Luke cant have visitors try and send him messages on here, on his facebook page, or using that MD Anderson site from when he was first in the hospital (https://www2.mdanderson.org/sapp/contact/message.cfm) this is where you can type him a message and it gets hand delivered to his room. Even if you are a friend of "the parents" as he calls them it is so nice for him to have encouragement and such a vital time in his illness.
Someone will update with any and all news as it comes in!!
Thanks
Kendall
Since Luke cant have visitors try and send him messages on here, on his facebook page, or using that MD Anderson site from when he was first in the hospital (https://www2.mdanderson.org/sapp/contact/message.cfm) this is where you can type him a message and it gets hand delivered to his room. Even if you are a friend of "the parents" as he calls them it is so nice for him to have encouragement and such a vital time in his illness.
Someone will update with any and all news as it comes in!!
Thanks
Kendall
Friday March 27
It's around 2:30 on Friday. Luke's temperature spiked so he will be admitted. He will get antibotics for possible infection. Been told to expect a stay of 2-3 days. With his blood counts in the tank no visitors for a while.
Thanks for all the support.
Thanks for all the support.
This is a follow up on Kendall's email with a message of my own for everyone in Houston. Luke was diagnosed 2 months ago today. Luke has received 6 units of red blood cells to date, is getting 2 more units of red blood cells today and will probably need platelets Monday. Blood and in particular platelets are in short supply in Houston and MDA and are being released only if need is critical.
If you can donate there is a big need at MDA. Luke can get credit for any blood or platelets donated but in all honesty that is the least of our worries. What we have learned about blood donation in Houston is MDA's use of blood and blood products is large enough were they have their own donor program and sites. As a result MDA is not serviced by either the Gulf Coast Regional Blood Center or the Red Cross, which are the two groups that run the blood drives in Houston that most of you are are familiar with.
Naming Luke for credit when donating at either the Gulf Coast Regional Blood Center or the Red Cross will not transfer to MDA.
To get credit at MDA blood needs to be donated at an MDA donation center. The link to the MDA blood donation website is: mdanderson.org/departments/bloodbank/dIndex.cfm?pn=0A133F7B-C05C-4906-A3B0DB0161B9CD6C. There are several sites around town and each has their own hours. The phone number for the main center is 713 792 7777. For anyone to donate as a credit to Luke, which again is not my purpose in sending this, the donor would need to provide Luke's patient ID number ("776302") when donating at an MDA facility. Luke does not receive the actual blood donated so blood type is not important.
If you can help, patients at MDA would appreciate it.
If you can donate there is a big need at MDA. Luke can get credit for any blood or platelets donated but in all honesty that is the least of our worries. What we have learned about blood donation in Houston is MDA's use of blood and blood products is large enough were they have their own donor program and sites. As a result MDA is not serviced by either the Gulf Coast Regional Blood Center or the Red Cross, which are the two groups that run the blood drives in Houston that most of you are are familiar with.
Naming Luke for credit when donating at either the Gulf Coast Regional Blood Center or the Red Cross will not transfer to MDA.
To get credit at MDA blood needs to be donated at an MDA donation center. The link to the MDA blood donation website is: mdanderson.org/departments/bloodbank/dIndex.cfm?pn=0A133F7B-C05C-4906-A3B0DB0161B9CD6C. There are several sites around town and each has their own hours. The phone number for the main center is 713 792 7777. For anyone to donate as a credit to Luke, which again is not my purpose in sending this, the donor would need to provide Luke's patient ID number ("776302") when donating at an MDA facility. Luke does not receive the actual blood donated so blood type is not important.
If you can help, patients at MDA would appreciate it.
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