Harpooning season open one more week

The patient is fairing well. No problems over the weekend. Counts are still depressed which makes the swine flu that much scarier (Luke did suggest this evening our going to the army surplus store tomorrow and picking up a Haz-Mat suit).

Blood stats are white cells .5, hemoglobin 7.9, platelets 22 and ANC .32. Luke received a unit of platelets today but they passed on giving red blood. Will see what Wednesday labs look like.

As Luke says, the nurses "harpooned" him again today. Same routine as before; one, two, three stab. Three harpoonings down and three to go. So far not allergic reaction to the ELA. The only after effect of the harpooning was Friday when the thighs here described as the first day of swim practice followed by a few hundred squats.

That's it for the medical report. Model building continues. New project is building a pedal for his guitar. Have 6 potential concert attendees, still plenty of room.

MDA nurses need to double team Luke!

It's Wednesday evening. Luke is back from MDA after a long day. He received both red cells and platelets in addition to scheduled chemo. Chemo wise he received vincristine and Erwina L-Asparaginase (ELA). Vincristine was done IV. ELA was a different story.

Monday's posting had a brief expose on ELA. ELA is stable for only four hours so it's ordered. mixed and injected without any delay. We knew ELA would be an injection into the muscle, but what we did not know was each dose would consist of two injections.

To minimize discomfort the MDA nurses doubled teamed Luke and delivered two injections simultaneously, one in each thigh. The administrative process was nurse Sande and Anna came into Luke's room, smiled, Sande said on the count of three, Anna counted to three and Sande put a two inch needle in the Luke's left thigh and at the same time Anna put a two inch needle in Luke's right thigh. Luke had no time to say anything and Sande and Anna placed themselves sufficiently away from his flailing arms that they were out of harms way. In the end Anna was deemed to have provided the kinder, gentler experience but to Luke it probably did not matter. Not that Luke cared, but I wish I had had the camera ready as it was a bit of a surreal experience seeing the synchronized administration of injections. That said there will be other photo opportunities as ELA is repeated five more times.

So far no allergic reaction to the ELA. We are hoping no antibodies build up causing an allergic reaction in round two on Friday.

Picture of the week is Luke and Dr Yuen. Dr. Yuen has been with Luke from day one at MDA. She is a great individual with an ever present smile. By the way I have told Dr. Yuen if she loses interest in the practice of medicine she may have an opportunity to star as Edna in the movie sequel to "The Incredibles". What do you think?

Luke has gotten back to his model building. He spends a lot of time on each and per the attached pictures, the results are pretty impressive.

At the end of May if Luke can be convinced and feels up to appearing in concert Mom, Dad, Jeff and Michael have committed to attend. Hoping there are others.

Blood drive and fund raising plans are going great. Hope to have a few surprises to announce soon. Keep May 30th free!

April 20

After his blood transfusion last Thursday Luke has had some good days. A bit more energy and appetite and no headaches or nausea.

Today's labs were as expected. Hemoglobin is up a little (8.5) but still low, white cells are still almost non-existent at 200 and platelets dropped to 30,000. He finished his cybertine on Saturday. Last time low counts came about a week after the last dose of cybertine.

Wednesday Luke will get the first dose of the replacement drug for PEG asparaginase -the drug he had the allergic reaction to. For those interested and since I have nothing else to to this evening here's some information about asparaginase and what it does. L-asparaginase is an enzyme that breaks down L-asparagine which is produced by normal body cells. ALL cancer cells don't produce L-asparagine so they need to get their supply from the blood to grow. PEG asparaginase reduces the L-asparagine in the blood. Without a supply of L-asparagine the ALL cancer cells starve and die.

Asparaginase Luke gets is derived from E.Coli. PEG Asparaginase has a coating that has a time release effect that keeps it in the body for an extended period. The new drug Luke will get is Erwinia L-asparaginase which does not have the coating to keep it in the body. Consequently Erwinia L-asparaginase needs to be administered in lower/multiple doses, so the Lukester gets to go to MDA M-W-F for two weeks to get his dose. He'll get to hang out a few hours each trip to watch for allergic reactions similar to PEG asparaginase.

The sisters planning for the May 30 blood drive and Leukemia Society fund raiser continue. Hope to see a good crowd. Been trying to convince Luke to put on a benefit concert that evening - would any of the blog readers out there donate to the Leukemia Society to hear Luke play and sing?

Wednesday Post-Clinic....

Hi All...Luke had his clinic appointment this morning. His body is responding as expected to the chemo, while this is great news it also means his immune system has taken a hit. His doctors have asked that he lay low this weekend and said that visitors are not a good idea as he extremely susceptible to infection. So, please continue to email/text/call Luke, but for the next few days no visitors.

He has to return to MDA tomorrow for some blood. The clinic was super busy today and his counts were what MDA deems "borderline" for transfusion so they asked that he return tomorrow. Luke also had his weekly chemo today, it was a quick injection versus a longer infusion. We left the MDA and are already home, Luke is crashed in the game room on the couch.

Thanks for keeping up with us via the blog and for all your love and support. Updates soon!

EB

Monday April 13

Happy to say the past few days have been quiet. Luke's initial bounce back from chemo was pretty quick. He is happy to report that he's had no pain meds for 48 hours. He has clinic on Wednesday and will get labs drawn to see where his blood counts are then he starts another round of chemo.

On Sunday Luke felt well enough to participate in the first annual asshat ugly Easter egg contest. Winning entries will be posted on the blog soon.

Kendall left on Friday and Beth assumed responsibility for Luke. Beth returns to SF mid week when full responsibility for Luke will be turned over to the 'rents.

Alex Anderson stopped by today for a quick visit. That's all the news for now. We see how the rest of the week goes.

Blood donation

Hi all-

So we are sooo excited and have had an overwhelming response to Luke's blood drive and may even extend the hours so let me know soon if you want to donate so I can let MD Anderson know if we need more time! I am attaching a link below that gives you info on blood and platelet donation through MD Anderson so you know whether or not you can donate. Also, here is the address of the facility

Lakewood Forest Residents Club
15006 Lakewood Forest Dr.
Houston, Texas 77070

http://www.mdanderson.org/departments/bloodbank/dIndex.cfm?pn=4499E730-38C1-4154-AE022E7734DF9264

E-mail or call if you guys have any other questions.

Just a quick update on Luke:
Got all of his chemo last night and this morning and is feeling pretty crummy right now. Had been nauseous and been throwing up all morning but was able to get some IV Benadryl which seems to help him more than the anti-nausea meds. He was able to lay down for his MRI which took about 45 minutes. He then slept all the way home and went straight to bed. We have been giving him sips of fluids and keeping up with the meds to stay on top of the stomach yuckies!

Please continue to keep him in your prayers, this phase is literally a PAIN IN THE ASS and creates only pockets of time where he feels ok.
Updates soon
Kendall

MAY 30TH 2009

Hey guys...on Saturday, May 30th from 8am to 2pm we are going to be hosting a blood drive at Lakewood Forest Residents club for Luke and MD Anderson. Last year alone MD Anderson had to use 121,000 packs of platelets for their patients. They need our help to stock the blood bank!

We will be giving away shirts and doing raffle entries for some pretty sweet prizes for those that donate blood or platelets. For those that cannot donate we will be selling shirts and raffle tickets and all the money will go to the Leukemia and Lymphoma Society! I would love for you all to come out and support Luke even if you cannot donate so here is what i need...anyone that is interested in donating needs to contact me at my number or e-mail address below so I can get an idea of how many people will be donating...the more the merrier!!! Also, when you send me an e-mail or talk to me let me know what time you would like to donate so I can put you in a slot, pretty much every 15 minutes someone can donate (give or take). Their will also be opportunities for a few people to donate platelets, these are much needed in cancer patients because they help the blood clot so without them a patient can lose a lot of blood, the problem is it takes about 1.5 hours to donate so if you have the time to do it we would love to have you and we will be giving you extra raffle tickets if you decide to donate platelets!

You have no idea how much giving blood can help people so please come out, get a shirt, and maybe win a cool prize and support the Leukemia and Lymphoma Society! Luke will also be there and maybe we can convince him to sing a bit if he feels well enough!

Talk to you all soon
Kendall Novick
kendallnovick@gmail.com
720-841-7759

PORT!!!

I got into town yesterday and Luke got his port today and was admitted afterward to start his chemo. His port is "accessed" and working well he is having a bit of shoulder pain on the side where he got his port and a little headache but other than that he is doing well.

He starts another round of the "tough stuff" tonight so this time next week his counts should be way down and he may need another round of blood. He is literally bored out of his mind so if anyone has any amazing ideas on how to keep him occupied please let us know :)

He is being a trooper but is bothered by every beep of the IV pumps and monitors! We just got to his room for the night so are settling in for some good sleep (yeah right!) and chemo. We will just have one dose of chemo and an MRI tomorrow (to take a good look at his head since his headaches have been so bad) and then should be heading home as long as he is doing well!

Will be in touch
Love ya'll
Kendall

Sunday April 5

So far the weekend has been uneventful. Luke was back at MDA on Friday for an appointment with the neurologist and to have some lab tests. He will likely have an MRI done to get to the bottom of his headaches.

Our hearts skipped more than just a few beats when the labs taken before his discharge on Thursday showed 1% blast cells. The doctors have assured us it was normal as his bone marrow is working overtime to produce blood cells. We smiled again on Friday when labs came back with 0% blasts.

We're enjoying the sunny and cool weather by taking walks Saturday and Sunday evening. Right now Luke is scheduled to be at MDA Monday for an anesthesiology assessment prior to having a port put in on Tuesday (this will make it easier for lab draws as well as chemo....basically he won't have the line in his arm). Wednesday he has clinic and starts chemo once again.

Fighting boredom and no appetite. If anyone has a cure for either let us know.

LUKE IS COMING HOME!!!!!

Update from Spa MDA

Family and friends here is the latest on Luke: The neurologist came by for a visit this morning, his initial professional opinion was Luke's brain was off and slightly twisted about the center cortex (since we knew that already we were prudent and asked for a second opinion). In reality, Luke was likely experiencing migraine headaches caused by either chemo, his lumbar punctures, dilated blood vessels in his head or a combination of all three.

They are now trying different meds for his headaches and are cutting back on his morphine. Reducing the morphine has greatly improved his level of consciousness, Luke was on a pretty high dose Monday and Tuesday and was, when in a subconscious state (i.e. asleep), expressing some rather unique philosophies about any one of a number of topics. In addition his sleep-talking/ranting subsiding, his headache issues are starting to get under control.

Today Luke received his latest IV dose of vincristine. He will go ahead with his interthecal (LP) dose of methotrexate tomorrow. To reduce the chance of another round of headaches, assuming they are related to the LPs, they will monitor the pressure in his spinal column when they inject and will have some of his blood injected around the site of the LP puncture (called a blood patch) to prevent spinal fluid from leaking out and causing an imbalance of pressure upstairs. He won't get the blood patch until Friday so, it looks like he will be extending his stay at Spa MDA until at least Saturday. This visit to the Spa we got to meet the dimpled, world renowned 9th floor nurse Yvonne! We will miss her!

Luke's appetite is getting better (adjacent picture is some of Wednesdays lunch) and with the morphine reduced he has greatly extended his waking hours. One curious fact about the chemo Luke is receiving is he now has no reflexes in his knees and ankles. You can take as big of hammer as you want and if you give his knee a rap there is no response. We believe that his response to other stimuli is also being impacted by his chemo as he is having a difficult time responding when there is a request for silence. Father Bravo stopped by Monday but missed Luke as Luke was out getting his CT. Thought he would get back on see Luke today.