Friday May 8

Luke started the day not feeling great. He got 2 units of blood and seems to rebounding. His hemoglobin was low but his ANC and platelets were showing signs of recovery. For now he needs to keep a watch on exposure to infection. With as low as his blood counts are he will need to wait on next week's labs to see if he can start the next round of chemo.

Time Off from Chemo

On Monday Luke got the last harpoon for a while. His labs revealed that his counts were still low, things are beginning to trend upward but rather slowly. Luke did not get any blood, his doctors would like to see how his body reacts now that the chemo has stopped for a few days. Luke will be back down at MDA Friday for another count check, if necessary he may be transfused.

Because his counts are so low Luke is pretty tired and he runs the risk of infection. Dr Yuen does not think he will be ready for chemo next week, but he has surprised her before.

The next round of chemo is not as intensive as the last several months. For the next round Luke will get methotrexate, vincristin and erwinia every 10 days with a few spinal taps thrown in. The dosage of methotrexate will be increased each week until his system says no more.

Last Harpoon Monday; Week Long Respite from Chemo Starts Tuesday

Hello everyone. This week Luke received the his double chemo injections M-W-F. Wednesday was his longest day as in addition to the chemo he needed another unit if platelets and two units of blood. To date Luke has needed 2 units of platelets and 11 units of red blood. He is just one Leukemia patient at MDA so you can imagine how much blood MDA needs on a daily basis. MDA needs all the platelets and blood they can get!!

Luke is feeling good despite some pretty low hemoglobin. Also with no white cells the Docs wanted him in isolation as much as possible. By week end all counts did look to be trending up.

To the right is Luke and nurse Anna. Anna is a cancer survivor herself and has been a delight to get to know. She has administered most of Luke’s chemo, blood and platelets as an outpatient and took responsibility for harpooning Luke’s left thigh on Friday.

The Luke story of the week comes from Wednesday's clinic appointment. Nurse Brandie came back with Luke’s lab results but before she could say anything Luke asked what super hero powers he had tested positive for. She had to have him repeat the question and responded with "those results aren’t back yet".

Uncle PJ was a surprise visitor this week. He stopped by when driving from Kansas City to Tulsa for Colin’s (his son) soccer tournament (he was aware that Tulsa via Houston was not his shortest route). PJ stayed long enough to donate some chicken broth (aka as platelets) and red blood cells to MDA as well as supervise the MDA nursing nursing staff administering to Luke after Friday's chemo.

You can form your own opinion but judging from the picture to the right it looks to me like donating is either truly painless or MDA provides a complimentary dose of Valium before hand.

PJ brought Luke a book that was highly recommended by Chase (his other son). The book is one with extensive and very profound insights into life. It provoked laughter from Luke numerous times during Friday's chemo. As testament to the sophisticated nature of the book, when his parents asked what was so funny Luke's response was “you don’t want to know” or “you wouldn’t understand”.

PJ also brought a box full of his version of the "Ass Hat". The design was done by one of the design architects at his firm. I call you attention to the picture below and the subtle curvature in the lower portion of the "SS".
By the way PJ left at 6 am to continue the drive to Tulsa Saturday morning only to get a call at 9 am that the soccer tournament was rained out!

Kendall reports that the response to the blood drive has been great. All the time slots are close to being booked and she says she may need to think about MDA bring in more tables.

We expect to finalize plans for the Leukemia and Lymphoma Society fund raising event this week. We do know Luke will provide entertainment and Wal-Mart has donated a 42” LCD TV that will be raffled off along with other items. Right now we are working on two dates, Saturday May 30 and the afternoon/evening of Sunday May 31. We will finalize ASAP but for now please keep those dates open to help us help others in their fight with Leukemia.

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