Evan The Warrior

Another Bump in The Road

 

Evan hit an even bigger bump in the road. His lab values have fallen again. His white blood cell count is critical at 0.67% and his ANC is 310, facts for the cancer moms and the medically inclined, who read.

All chemo has been stopped. He will return to the hospital next week to see if allowing his marrow to rest, will allow it to recover. The situation is double edged, for while we can’t have him reaching this level of toxicity, we also can’t allow the “beast” free reign to attack his system, which, at this stage in the game, is now unprotected, medically speaking.

Evan is Neutropenic, which means he can’t readily fight off infection or everyday germs,like the rest of us.

Neutropenic on Maintenance...three weeks running...who would've thought?

The marrow produces white blood cells, which are the cells that ward off illness and everyday germs. Evan essentially has none.

The good news is that he does have the precursors to white blood cells spinning around in his blood, so perhaps with some rest, his counts will rally. Why this has occurred so far into maintenance and what precipitated the fall, are unknowns.

Evan has managed to ingest 125% levels of chemotherapeutic agents for quite awhile now. Dropping him to zero will necessitate a long slow climb back to the top. Many of our long term readers will recall Evan’s painstaking process of reaching the pinnacle.

Now we do it all over again.

I suppose one can’t change the direction of the wind, so we adjust our
sails. The great news for the little man hanging at the top of the mast, is that he comes down to bowls of ice cream (prohibited evening dairy product on chemo and steroids) and the freedom to eat such delectable treats after 8pm of an evening (prohibited during chemo).

Evan’s spirits remain high. I am hoping the news will be improved next week when Evan returns to the hospital for counts. Until then, have a wonderful week. Thanks for checking in.

xoxo,
mom

Tis the Season

“Tis the season”…the nurse said, shaking her head, and looking at Evan’s lab values. “Never ever, ever second guess the need to have an Oncology patient seen”.

 I took Evan in to CHLA yesterday for an unscheduled visit because things  have not improved this month with his energy levels, rashes, headaches and spirits . When I couple his lack of vigor, extreme fatigue and other symptoms with the fact that I can’t “see” his cancer, many times I have only my “finger on the pulse” of his disease or Mom’s intuition to go on to decide if there is a need for him to be seen.  It is often a tough call.

The hospital was literally overflowing with patients and  Oncology Urgent Care,  Hemoc Day Hospital and  Onc/Hemo Clinic had no beds. Evan’s visit took place in the halls, but it was seamless and the wonderful nurses got him everything he needed and lucky for us, after he was evaluated, it was decided he did not have to be admitted.

While the day spent at the hospital was not a “normal” day of holiday preparations and school and it threw a big kink in all of our stress levels, sleep, and “normal” plans at home, thankfully Evan dodged this bullet and was released just before rush hour yesterday. Thanks BT for picking up the slack, once again! You are as amazing and have as many warm moving parts as a big ole bowl of spaghetti! (Evan’s words, not mine)

 The thought after evaluation is that the increase in chemo 3 weeks ago has tanked his energy levels, or, he is fighting a virus and it takes all he has to do this, or, he is simply sick and tired of being sick and tired…tis the season. I couldn’t help but notice the bulletin board in the Oncology Ward yesterday while we waited. The wishes on the green construction board trees were hardly normal. Nurses and patients alike had written wishes for things like plasma, packed red blood cells, high ANCs, platelets…cures, not presents!

Evan’s lab values were good enough to send us home, with precautions, and to continue his chemo at the same levels one more week here at home. I will take him back just before Christmas, or anytime in between, as the need arises. Let’s knock on wood that he can tolerate the next big dose on Monday and feel maybe even a teeny tiny bit better. It’s really hard to see our little man so low.

Tough starts now!

Thanks for checking in!

xoxo, 

mom

The Good, The Bad and The Ugly

The Good
Evan felt really good last week, thanks to a rise in his blood counts, and we took full advantage of the spike in energy. Evan visited school, had his school picture taken AND spent an hour in class. He even had recess! Plus, we pulled off a visit to the Pumpkin Patch, trick or treating AND a short play date! Yep…things are lookin’ up!

These pictures practically ooze with enthusiam, wouldn’t you say? I am so glad Evan had such a spurt of really good days. I think this next picture is my favorite picture ever. I have entitled it: SOLIDARITY.

This one is too dark but there is one thing none of us can miss--LOOK at EVAN!!

The Bad
Surgery. Steroid week. Ugggh. I thought a week was seven days… we are still dealing with the aftereffects, Day 10. Needless to say, Evan did not get to eat any Halloween candy, but he DID get to dress up and go trick-or-treating: two houses last year, one whole block this year. Progress! Steroids are very, very bad…but Leukemia is worse, so we take the good, with the bad and press on!


My Steroid Mask

The good times are due to the first rise in Evan’s ANC (blood counts) up into the 2,000 range. You and I are oh, say, 10,000. To keep the disease at bay, Evan needs to be between 750 and 1500. That’s pretty darn anemic and on the edge of low immunity to colds, cough and flu, etc... The bad news is that he will be adjusted back DOWN next month, with a rise in his chemo drug doses, to keep him in the target range.

For now, we delight in the good and remain very, very thankful!

THE UGLY

Two BIG scares. Strike that...THREE since I started typing!

The first scare was a blast from the past. Remember blasts- those immature white blood cells that signaled Leukemia? At diagnosis, Evan’s marrow had 87% blasts, levaing little room in his sytem for anything but the cancer.

At Clinic last week, they found ONE white blood cell in his spinal fluid and I waited a V-E-R-Y LOOOOOOONG 24 hours for a Cytology Report on that one little bugger. The report came back negative. “Whew”, she exclaims, wiping brow and singing Praises!

The second scare came yesterday (AND NOW AGAIN TODAY) when Evan woke up in pain, sweating, hands shaking, nauseaus…you get the picture. His blood sugars were critically low, putting us in the arena of “Get the Glucagon Pen…no time to call 911”. Needless to say, we are still on high alert.

I have a ton of updates/pictures left to share. The truly good for me these last two weeks has been Evan’s energy and rise in spirited activities. The bad for me is the house cleaning. The truly ugly is my “To Do List”.

Have a wonderful week! Vote and then...please... Donate Blood. There are severe Platelet shortages again. Please continue to pray for all the cancer kids. A good day is hard won for them and definately the exception, rather than the rule.

May the best man win!
xoxo,
mom

 

 

 

CAN I HAVE KETCHUP WITH THAT?

Surgery is complete. Evan is recovering. I got to watch Evan get put to sleep, which was a first for me. I also got to feel the fear that comes from being told the surgery will be over in 20 minutes and, an hour later, still not hear anything. (Details available upon request.)

Yes, Parker, we now have his line, and a few other, uh, shall we say, ‘attachments’. Right now Evan doesn’t feel so hot and he doesn’t even want to think about today. I don’t blame him.

The surgeon told him, in a morphine stupor- so he may not even remember- that while he didn’t get the “gold”, he set a “house record” for level of difficulty.

When Evan starts feeling better, I have some good news for him. He gets to put ketchup… on his ketchup. Sugars are normal today. Thanks for all the prayers. xoxo mom

GO TEAM USA

I Can't Sugarcoat This

Evan put on his Nike "Fearless Warrior" sneakers yesterday and allowed the expert PICC/IV surgical team to attempt one more removal of his line, without anesthesia.

It didn't work.

All week long, there were road blocks to the resolution of his line problems...insurance, OR schedules, radiology conflicts, procedure re-codes, case managers with the day off, shift changes, preop exams, new labs, those who wished to give it the ole college try, etc....There was the slightest chance that his line could have migrated down, by itself, during this interminable wait, so Evan agreed, under stringent conditions, to a retry, before a dressing change and a weekend wait.

The good news is that Evan is not going to be subjected to a retry. The better news is that he is the first surgical case, Monday morning.

Maybe.

Labs revealed a new problem. His glucose levels (blood sugar) have risen from a normal of 76 on Monday to a level of 376 on Friday. That's an impressive jump. Steroids have been discontinued. He is being watched.

His clotting factors, not insignificant, given the nature of the impending procedure, are not in line with normal parameters either. I am going to attempt to mentally prepare my son for the procedure, but I think it prudent to cloak my words with prepositional phrases. I am running out of platitudes and I can't sugar coat my words right now. Evan has been instructed to avoid any and all sugar- for the weekend.

Conjecture is that "stress" might be a factor for these blood levels. I'll go with that. More next week. Enjoy these last few days of summer. Please keep Evan in your thoughts. xoxo mom

BLOOD, SWEAT, TEARS And SURGERY

Yesterday was Clinic and a no good, horrible, very, very bad day, to use my son's words. Evan was scheduled for an LP and spinal and IV chemo. He was invited to do the LP or spinal tap, without sedation, without the OR, without "loopy" medicine. Tough it out...true grit style.

Evan accepted the challenge and aside from the seven and a half minutes of the actual procedure feeling to him like a lifetime, not to mention the complete depletion of his emotional stress reserves, and the additional ten hours in an Urgent Care hospital bed, he did fine.

His spinal fluids were reported as clear some hours later...no relapse. Praise! What a strong, brave boy! I was so proud of him, albiet, exhausted myself.

The procedure took absolutely everything he had inside his brave soul and it tore at my own heart as well. No one should...well, you know where I am going.

Unfortunately, while held captive, the doctor decided that perhaps Evan had the wherewithal, physical stamina and emotional fortitude to remove his PICC/IV line, again without anesthesia, on the same day! OK, that's alot to swallow in one day, for even the strongest of us. Evan accepted the challenge. You see, after a time, the huge and significant risks of keeping the same IV line and the possible complications outweigh the benefits of no pokes and you come to a juncture in treatment where it is safer to be poked and have IVs for all necessary treatment.

There was alot to the decision, but it was finally agreed his line would be removed, again, with no anesthesia! It all proved to be just about too much for our little warrior man. I had him primed and focused and enthusiastic, but, there were complications. Statistically speaking, 399 of 400 children have a line removed with no problems. Guess what number Evan got? Yep... 400.

Ten hours and buckets of blood, sweat and tears later, we came home to await the scheduling of surgery this week to remove the remaining 15 centimeters of line that remains. I won't go into the details...most people I know have turned "green" just thinking about what is involved.

The surgery will be vascular in nature and involve flouroscopes, radiation, a surgeon and a radiologist and yes, anesthesia, and hopefully, no more pain. Yesterday was alot of pain. Children and off the charts pain...the combination brings me such sadness.

I also haven't figured out how I am going to work with a child on steroids, "roid" rage and hunger nothwithstanding and the 12 hours, plus procedure with no food or drink, once surgery is scheduled this week.

The only way out is through, so we march on. This too shall pass, but until it does, please keep Evan and all the other children who struggle with this beast in your thoughts. It's quite the bump in the road for Evan and so brutally unfair for all who are diagnosed. These children truly suffer. Thanks for checking in on Evan.  For those of us flabergasted at the recent Carepage changes, I will double my posts here and there for a time.

From my vantage point, if the frustration at the new Carepage site confounds you, like it does me, or if our car breaks down, or our heads hurt today, we might give a thousand thoughts and prayers up for these precious children and consider a posture of gratitude, for, in the scheme of things, with all things considered, we probably are having a very good day, indeed.

More, when I know more. Surgery will probably be on Wednesday.

xoxo mom

Children's Hospital in Top Ten

U.S. News & World Report Magazine Names Children's Hospital in Top 10 Hospital Ranked Among Top-10 by U.S. News & World Report CHLA is also ranked among the best in the nation in six specialty areas Our hospital has been ranked 9th among 143 Children’s hospitals and medical centers in the nation, according to U.S. News & World Report magazine’s “America’s Best Children’s Hospitals” in its June 9, 2008 issue.   Childrens Hospital Los Angeles has been ranked among the nation’s best hospitals since the inception of the magazine’s rankings in 1990. Specialty Care Rankings In addition to the top-10 ranking for Childrens Hospital Los Angeles, six of the specialty areas were rated among the nation’s best: Cancer  Heart & Heart Surgery  Respiratory Disorders  Neurology and Neurosurgery  Neonatal Care  Digestive Disorders  “While we are pleased that we continue to be recognized as one of the top pediatric facilities in the United States in this survey, our priority will continue to be providing the very best medical and surgical care to the sickest, most seriously ill children, teaching the next generation of pediatricians, pediatric surgeons and pediatric nurses and conducting the research that will lead to new treatments and cures for diseases and conditions that afflict our children, like cancer, congenital heart defects, diabetes, sickle cell disease, immune deficiencies, respiratory disorders and more,” shares CEO Richard D. Cordova, FACHE.  “We understand the enormous responsibility we have to the children and families we serve and to children everywhere.” About the Rankings U. S. News & World Report invited 143 hospitals to complete its survey to be considered for ranking.  One hundred and thirteen chose to do so.  The basis for the rankings is a blend of: Reputation  Outcomes (where available) Care-related measures (e.g., patient volume, nursing and credentialing)  Reputation The magazine’s editors surveyed 1,100 pediatricians by mail and asked them to name up to five centers they believe to be most successful with difficult cases in their specialty.  The pediatricians were chosen at random from the American Board of Medical Specialties’ database – 200 for general pediatrics and 150 for each of the six specialties.  Depending on the specialty, reputation counted for 50-60% of the final score.U. Outcomes Inpatient death rate was used in heart/heart surgery and in neurology/neurosurgery.  That measure was not used for specialties that focus on outpatients – cancer, digestive disorders and respiratory disorders.  The editors said that measures for neonatal are in progress.  Where available, outcomes counted for 10% of the score. Care-RelatedMeasures The editors used nurse staffing, the availability of important technologies and patient volume.  These measures counted for 40% of the hospital’s score. How we Rank Among Our Peers Three other children’s hospitals in California were ranked in the new survey: Lucile Packard Children’s Hospital at Stanford (12th)  Mattel Children’s Hospital at UCLA (16th)  University of California, San Francisco Children’s Hospital (20th)  Complete Rankings of hospitals and specialties Read More about Our Reputation and Recognition More Press Releases Contact Our Media Relations Representative

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