Just waiting on a doc

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

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.

...

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!!

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.

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

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.

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.

Fevers

I dont know a ton of details but Luke is with my parents in the Emergency department at MD Anderson after spiking a temperature over night. He also has some nausea and a headache (both of which he has had prior to the fever). They drew some labs and we are just waiting on what the docs have to say about the labs.
When Luke was first diagnosed Dr. Wells (his head doctor) made sure to let us know that it is not "if" Luke gets an infection but "when" and that our family and most importantly, Luke, would become VERY familiar with the MD Anderson ER. One of the most important things in a patient getting chemo that knocks down your immune system so much is to come straight to the ER if there is a fever!
As we get more details someone will check in!
Keep Luke and his strength in your prayers...he is getting tired of that place!!
He looks at this site too so either on here or on the facebook page leave him a message!!
Love you all
Kenz

Home

Luke got to come home tonight...his labs came back, much improved! Just wanted to let you all know!

Hives and itching

Luke had his regular Wednesday appointment at MDA today and ended it with an admission to the hospital. He started the day out having an allergic reaction (hives and facial swelling) to one of the drugs he had recieved (anti-asperaginase), this is apparently is pretty common. They stopped the drug and gave him some benadryl and steroids and Luke slept the day away, he also received a blood transfusion. During the second unit of blood all of his labs came back and his carbon dioxide level (this helps to tell how acidic or basic your blood is) was extremely low. This can be caused by a few things, but the docs are not sure the exact reason but it is possibly due to the fact that he hasn't been able to eat much over the last few days. More labs will be drawn this evening after all his transfusions are done and hopefully he will be sent home later tonight...I just got off the phone with him and verbatim, he is in no way staying the night at the hospital. Someone will update the blog later when we know what his lab results are and what the night ahead holds!

Thanks for the continued prayers and support

Update March 23

There is not much to report. Luke finished his second round of Cytarabine on Saturday. He is tired, has no appetite and is battling headaches and some nausea. Believe it or not though, he still has a full head of hair.

Luke has a clinic appointment on Wednesday. Depending on his lab results he may need more blood. On the chemo menu this week is Mercaptopurine, PEG-asparaginase, methotrexsate and Vincristine (we will have to wait to see what his labs look like to see if he gets the full chemo menu).

Terrance and Enid returned to Miami on Friday. Kate returned to school on Sunday. Francis stopped by Saturday and Megan is in town for her spring break this week. Aunt Mimi and cousin Callie are on he way in from Denver for a visit. Luke enjoys visitors but it wears him out. I took a long ride with Luke on Sunday, we had no destination, just picked a direction and drove. Other than his "yaking" on the way home it was a good adventure.

Wednesday March 18

We are learning that dealing with the "Asshat" there are going to be good days and not so good days. This was one of the not so good ones. Luke had clinic at 7:30. He woke up with a bad headache and for the first time nausea.

His blood was taken upon arrival at MDA. The lab results showed the cytarabine is taking it's toll. His hemoglobin was down to 6.3 (14-18 is normal) and as a result he got two units of blood, he also got methotrexate intrathecal (spinal) and the first of four days of cytarabine. With his hemoglobin so low he spent most of the day sleeping while being transfused.


Cytarabine's effect on the blood counts will max out between days 7-14. Because he gets cytarabine again this week, Luke will likely need blood again next week and possibly the week after.


Matt Frazier and Greg Balhoff stopped by yesterday afternoon and stayed for dinner. Enid and Terrance made it in from Miami and arrived late last night. Luke fell asleep before 10 pm and left for MDA at 6:15 am, so he did not see Enid and Terrance until he got back from MDA around 7 pm.


Luke is doing a better this evening, his headache and nausea are under control. His energy picked up enough with the blood to want chips and salsa from the Del. We will need to watch things for the next few weeks. Along with a low hemoglobin, his white cell count is low (1.5 vs. 4-11 being normal) which makes him very susceptible to infection.

Everyone take care.

Greetings from asshat central. The highlight of Luke's weekend was the arrival of his sister Kate, home on spring break, and his belongings from U of Miami hitting the driveway. Both sister and possessions arrived within an hour of one another.

Luke received many cards and letters during the week. The most unique were the "Asshat" and "Go Luke" M&M's from his Aunt Sherry and Uncle PJ (to our knowledge M&Ms of this design are not available in local stores - if you have a chance come by and enjoy a few while they last).



Physically Luke is hanging in there. Chemo has started taking a toll, he's tired and witout taking steroids his appetite has all but disappeared. We have not found any menu item that he has had an enthusiastic response to.

He finally gave up on the mowhawk and opted for a buzz. It looks like the chemo took care of all his dark facial hair as now his beard is quite red in color.

We are watching a lot of movies. Luke took a break from model building for a while but is now attacking with a renewed interest. To date he has finished two airplanes and a tank.

Enid and Terrance from U of Miami are rumored to be taking a spring break road trip to Houston, Luke is looking forward to the visit!

His next clinic appointment is scheduled for Wednesday, at this visit we will see what his blood work numbers look like and this will determine whether he will need a transfusion.

Everyone take care, thank you for your continued support.

Start of Consolidation

Luke started Part I of Consolidation getting 4 meds. Cyclophosphamide, cytarabine and mercaptopurine were given IV and methotrexate was given by an injection into the spine. Clyclophosphoamide is hard on the kidneys and bladder so Luke is spending the night in MDA on IV fluids to be sure he is hydrated. He will get Cyclophosphamide again in week 5.

First appointment at MDA was 7 AM so it was an early morning. After labs and the spinal Luke had a good lunch and then slept several hours in the afternoon as he got the rest of his meds. As of the evening he was awake and having dinner.

The chemo protocol will hammer his blood and immune system Doctor said he would not be surprised if Luke needed a couple units of blood next week.

Luke's week off was good. Being off steroids the appetite is not what it was, but it is still good. Over the time off he got to play guitar, eat crawfish (twice), walk the beach and enjoy numerous visits by friends. Kendall returned to Denver today and Kate arrives from Kansas Friday. He is looking forward to his things from Miami arriving this weekend.

That's the latest. Take care and thanks for all the support.

The Weekend before phase II

Sorry it has been forever since anyone posted! Luke has had the last week and a half off from any procedures or chemo, but we venture down to good ole MDA at 7am tomorrow to begin phase II (consolidation phase). So here is what we (I have been in town for a week) have been up to this weekend...

Luke was well enough to spend lots of time out with friends but Sunday night we all went down and listened to some of our neighbors play music at Woody's and Luke played during one of their breaks which was awesome! Thanks soooo much to all of the guys in The Benevolent Order of Motley Young Rockers (I hope I got that right). The pictures above are from Sunday night.

We went to Galveston today and collected some seashells for me to take back to Denver and went and ate out. The weather was really nice and even though we just put our feet in the water was surprisingly warm. Tomorrow starts the "kick your ass" chemo and we are expecting Luke's head to be without hair soon as it is slowly thinning. This next part is 8 weeks long and has many different parts with many new drugs and some of the old ones. I think we are all ready to have the next 6 months behind us but Luke continues to take it day to day because he knows he may not get out much over the next few months.

Luke will be MUCH more susceptible to infection during the next few months than he was last month so make sure if you are sick or just have a scratchy throat don't come by; however, Luke LOVES seeing new people and it gives him things to look forward to...I mean he can really only look forward to his sisters coming into town so much. SO if you feel well please come entertain him for an hour or two. We will keep you all posted as Luke gets the first round of one of the "new drugs" tomorrow. I attached a few other random pictures below. Love you all and thanks so much for all the love and support the next few months is when we and mostly Luke will need it the most!

Please note--the leukemia/chemo DOES NOT cause Luke to make weird faces, he just enjoys doing that in pictures so I tried to put the least offensive ones up!

Stupid steroids...

So Luke and dad made a trek down to the MDA ER last night because Luke woke up with excruciating joint pain. It ended up to be he was going through steroid withdrawal (steroids were stopped on Friday). They gave him some pain medication and IV fluids and sent him home-he says he is already feeling better. The good news we did get out of the whole thing was that the results from his bone marrow aspiration on friday = NO BLASTS!!! So on to phase II!!

I wanted whoever got Luke the Snuggie (shown above) to see that it is getting A LOT of use, and if you try and laugh or make comments Luke states "The Snuggie is no laughing matter Kendall". I am also just posting a few pictures from when I was home last week. Luke and I have a habit of goofing off when taking pictures-and showing our tongues-as you can see with some of the pictures I posted in a previous blog, so when i got a new camera we had some catching up to do with picture taking! I also wanted to show you guys a picture that our AMAZING cousin Kevin DREW for Luke. It is only a picture I took of it so it really doesnt do it justice but he did it all by hand from some pictures he had of Luke from back in November. It really is freakin cool...

Thanks again for all the love and support!! Come by an say hi!