Lymphoblast Shlymphoblast . . .

as our dear and very eloquent friend Liz said in an early comment when she was feeling bullish about Dayssi's progress.

We feel kinda bullish ourselves today. We got the lab results from Day 15, and from today (Day 23). Dayssi's Day 15 bone marrow biopsy showed 0% lymphoblasts in her bone marrow and there were 0% in her peripheral blood. If we can keep these levels where we are for another week or so Dayssi will be officially in "remission." These numbers are down from 94% at the time of her diagnosis.

The results of the chromosome tests also came back from St. Judes. The chromosomal abnormalities in Dayssi's blasts (translocation of chormosomes 12 and 21) appear in 25% of leukemia cases and they are diagnostic of a favorable outcome.

Then, if this weren't reason enough to celebrate, Dayssi's counts are up. Her ANC (absolute neutrophil count) went from around 100 last week to 980!! Below 500 is neutropenic -- the body is extremely vulnerable to infection and can't fight anything off on its own. The doctors like to see her at or above 1000. So we are almost there. Dayssi's platelets are also up. Best thing about these changes: they indicate that her bone marrow is recovering. The leukocytes we've killed off are being replaced with new healthy functional blood cells.

If Dayssi's counts stay up this week, she will have her PICC line removed and a new PORT inserted next week. The port sounds pretty great. It is a kind of plug that is inserted under the skin and provides access to a central vein for administering medications and drawing blood. Cool thing about it is that it stays under the skin, there are no parts exposed, so it doesn't have to be cleaned or messed with, and Dayssi can bathe and even go swimming with it in. To use the PORT, we administer a numbing cream an hour or two beforehand and then a medical professional uses a needle to access the opening. But apparently it doesn't hurt at all.

Other results: Dayssi has gained almost 6 pounds since we left the hospital. She has not gotten any taller (:-). This should not surprise anyone who has read our previous blogs. Turns out this is a good thing: we learned recently that most kids, once they go off the steroids and move into phase II of treatment, become totally disinterested in eating. And the downward trend is is actually much scarier than upward, which, as much as we've joked about it, is also a little scary. This morning Jim asked, "Do you think she could explode?" He was only kind of joking. Anyway I suspect we'll be glad for whatever extra reserves we've been able to acquire.

Dayssi continues to endear more or less everyone she encounters. With her new puffy cheeks, buddha belly, and Don King hairdo, she is all the more adorable. She tends to have mood swings, also attributable to the steroids, so that sometimes she is much more subdued than usual, and other times she is a kind of manic, silly little chatterbox. We find her irresistible no matter what, but at the same time, it hurts to watch our "old" Dayssi, who we associate with our carefree, innocent, pre-leukemia life, morphing into our "new" Dayssi, who increasingly embodies the frightening picture of a child with a life threatening disease.

India is calming down somewhat as the rhythm of our lives approximates what she is used to. She has a new bike, which we've been taking out frequently, as we are in training for the ride to kindergarten in the fall. She also has her first dance recital coming up -- dress rehearsal tomorrow.

Jim and I are hanging in there. Neither one of us is firing on all pistons but between the two of us we are managing to function. We've found that spending money is soothing . . .yikes. So we have finally started our landscaping project, among other things.

Thanks again for the fantastic meals, and for the amazing and thoughtful gifts, phone calls, emails, letters and blog comments that have continued to pour in. Every single gesture touches us deeply.

Breakfast of Champions

Sorry for the long dry spell of posts but it was, after all, a holiday weekend. Overall, it was relatively calm and unexciting. For Dayssi, though it was mostly about the food (courtesy of the dexamethasone). This morning she woke up and said, “Can we get some breakfast?”

“Sure,” I replied hopping out of bed with alacrity. “What would you like to eat?”

“A waffle with syrup,” Dayssi said decisively.

“OK. Let’s go,” I answered as we trundled downstairs.

About half way down she added, “and some toast with cream cheese.”

“Well let’s start with the waffle,” I demurred.

Without stopping, she continued, “and some of daddy’s chips with cheese.”

Of course, I couldn’t refuse this request because, after all, daddy’s chips are so healthy (Soy and Flaxseed).

By the time we got to the kitchen she was demanding, “cheesy pizza” too.

I worked as fast as I could. One waffle and then another disappeared. The toast disappeared. The chips disappeared, and just as I was beginning to panic about the fact that we had no “cheesy pizza” she washed down the first three courses with a slug of “bubba” (sparkling water) mixed with OJ, and emitted a satisfied, but delicate, burp and declared she was “done” and wanted to watch TV.

I heaved a sigh of relief, piled the dishes in the sink and picked her up (she insisted on being carried) and ported her into the playroom. As I did I noticed, with some ambivalence, how much more my right bicep was bulging than it had the week before when I carried her with what I recall was relative ease.

Tomorrow we go in to the hospital for day 22 IV chemo– but thankfully no invasive procedures this week. Also, once we get past day 29, we lose the dexamethasone-- so no more “yucky medicine” – unless of course those unstinting research scientists in the pharmaceutical industry have managed to make the new drug – mercaptopurine -- yucky.

Day 15 update

For those of you who have been waiting to hear about the results of the Day 15 biopsy, the news is good. Dayssi was classified as M1 (less than 5% blasts in her bone marrow). We don't have the exact numbers yet but the doctors are pleased with the result.

This means we are still in the standard risk category, on the standard treatment protocol.

The girls are doing well. After all of the jealousy and anger earlier this week, they had a reconciliation of sorts yesterday: India spent the day with us in the hospital while Dayssi was having her tests. During the visit she asked to go to the gift shop, where she bought a music box for Dayssi. Next, Dayssi asked India to administer the yucky medicine (this is a real honor!) and at bedtime said she wanted to sleep next to India. India offered to move her bed into Dayssi's room. Dayssi drew the line there. But still, it is progress!

Dance like nobody's watching

Sometimes you've got to sing like you don't need the money
Love like you'll never get hurt
You got to dance like nobody's watchin'
It's gotta come from the heart if you want it to work

-Guy Clark

Special treatment

In the past 48 hours, Dayssi has become increasingly expert and even chipper about taking her yucky medicine (we mix it in yogurt and she takes it with a smile, even as she shudders at the aftertaste). When she gets a really yucky spoonful we both shout "YUCKY!!!" and then we laugh. She seems to feel relatively well, if easily exhausted, and we are grateful for every day that she is not uncomfortable.

The most notable side effect at this point, attributable to the steroids, is Dayssi's insatiable hunger. Dayssi wakes up each morning with one thing on her mind. "Can I have some breakfast?" The urgency, and the specificity of her cravings, reminds us of me when I was pregnant. Can you imagine having a 2 1/2 year-old pregnant person in your house? Sitting at the breakfast table, waiting for her toast, she'll ask in rapid succession "Can I have a corn dog? Can I have some beef? Do we have any beef? Can I have some pretzels?" While the corn dog is cooking, every 60 seconds, "Is my corn dog ready? Can I have my corn dog?" Today she tried it with mustard and announced "Ummmm. I like the mustard. It's a little spicy. Can I have some more mustard? And ketchup too!" She'll eat 3 pieces of whole wheat toast with cream cheese without blinking at breakfast time. And she's ready for snack 2 hours later. It is nice to have a side effect that we can smile about.

As there has been relatively little physical trauma since the tests on Tuesday, we are starting to see some emotional fall out. India has had a very rough week emotionally. What she is expressing, very clearly, is jealousy and anger about what she sees as Dayssi's special treatment. We actually had a few tantrums this week -- unheard of in our previous life with India -- one of which culminated in her sobbing "It's not fair!!" over and over again. Hearing her say what we are all feeling was a little cathartic for everyone. We've talked a lot with India about what is happening this week, and we've tried to give her some extra special treatment too, like as much one-on-one time as we can manage, and playdates with her very closest friends. Yesterday we took her to the Build-a_Bear workshop and she made herself a friend, Sarah, and she has been totally absorbed with caring for this stuffed kitty every since: bathing her, putting her to bed, reading her books and kissing her on the head It all seems to be helping. Now of course we occasionally hear the same complaint "It's not fair" from Dayssi, about India's special treatment. But at least it is going in both directions.

Jim and I continue to feel strong and determined to beat this thing. We have our moments of sadness and feeling overwhelmed by the emotional endurance this 2+ years of treatment (we hope!) is going to require. But we are continually bouyed up by our incredible friends and colleagues, who have found ways to reach us that we could have never imagined. Meals are delivered to us every night, bright blankets and pillow cases for the bed while we were in the hospital, countless toys and treats for the girls, relentless phone calls and emails, even when they go unanswered, efforts to help us find the best possible situation for India in kindergarten next year, and attempts (not always successful) to kidnap the grown-ups for a mini-break once in a while.

From the bottom of our hearts, thank you thank you thank you. Please stay close.

Dayssi by the numbers: The Technical Stuff

This entry is for all of you pre-meds who, like Jim, managed to avoid actually going to medical school but remember enough to be a pain in the petard to real doctors.

A caveat however:

“Not everything that can be counted counts, and not everything that counts can be counted.”

--Albert Einstein

Dayssi’s recent bone marrow aspiration (BMA) results from Day 8 came back showing 17% lymphoblasts. This is down from 94% at initial diagnosis and suggests a good initial response to treatment: The good guys are winning. We are hoping she is down below 5% by next week's BMA tests.

Some Other Numbers

WBC Blasts Platelets Hemoglobin ANC

Day 0 35 K 92% 135 K 5.5 400

Day 3 10 K 57% 70 K 7.7 100
Day 6 2 K 8% 46 K 12.6 90
Day 8 1.6 K ** 26 K 12.1 20


WBC = White blood count
ANC= Absolute Neutrophil Count
Blasts = lymphoblasts

The Treatment Protocol

Dayssi is being treated on the Children’s Oncology Group's Acute Lymphoblastic Leukemia protocol (a clinical trial)

This protocol has three phases: induction, consolidation, maintenance.

The basic induction treatment is below:

Outline

This is a 2-part, partially randomized, multicenter study. Patients are stratified according to early response to study induction therapy (rapid early response [standard risk (SR)-low or SR-average acute lymphoblastic leukemia (ALL)] vs slow early response [SR-high ALL]). After completion of induction therapy but before proceeding to part II therapy, patients are assigned to 1 of 3 groups based on stratification.

Part I

* Induction therapy: All patients receive cytarabine intrathecally (IT) on day 1; vincristine IV on days 1, 8, 15, and 22; dexamethasone IV or orally twice daily on days 1-28; pegaspargase intramuscularly (IM) on day 4, 5 or 6; and methotrexate IT on days 8 and 29 (and days 15 and 22 for patients with CNS3 disease).

Patients are assessed for response on day 29. Patients with M1 bone marrow AND minimal residual disease (MRD) < 0.1% OR MRD ≥ 0.1% and < 1% proceed to therapy in part II. Patients with M2 bone marrow OR M1 bone marrow AND MRD ≥ 1% proceed to extended induction therapy. Patients with M3 bone marrow are removed from the study.

* Extended induction therapy: Patients receive dexamethasone IV or orally twice daily on days 1-14; vincristine IV on days 1 and 8; pegaspargase IM on day 4, 5, or 6; and daunorubicin IV over 15 minutes to 2 hours on day 1.

Patients with M1 bone marrow and MRD < 1 % after extended induction therapy proceed to therapy in part II. Patients with M2 or M3 bone marrow after extended induction therapy are removed from the study.

Dayssi and the Paparazzi

See Dayssi in the news:

http://www.paloaltoonline.com/news/show_story.php?id=2829

(you will have to cut and paste the link into your browser)

Day 9-10: Coming Home

Coming home on Monday evening was a little like the movie of that title... war weary and shell shocked, we returned from our own Vietnam to a familiar but fundamentally altered previous life. Dayssi was glad to be back in her crib, and to have her trampoline to jump in, but still cross about the yucky medicines.

On Tuesday we returned to the hospital for her bone marrow tests and lumbar puncture and the pediatric anesthesia center was just another old stomping ground. She fell asleep even before the Propofol took effect. The procedures went smoothly and we went home at the end of the day.

We worked with our oncology nurse practitioner, Tamara, who is amazing, young, smart, approachable and as responsive as they get.

At home, we have started our new routine: meds in the morning – a Zofran appetizer (anti-nausea), a dexamethasone shot, a Pepsi chaser, a little Zantac to settle the stomach acid churned up by the dexamethasone, and a little Docusate to keep the bowels moving – apologies to those for whom this is more than you needed to know.

Friends and colleagues have been delivering delicious meals and even more presents for India and Dayssi, for which we are very appreciative. We have also gotten some tasty bottles of “daddy juice” (that’s wine for those of you unfamiliar with the euphemism), for which we are even more grateful.

Life is settling back into a routine and Dayssi is reverting to her playful, mischievous old self. Aside from the relentless hand washing and the daily heparin flushing of the central line (IV), we are beginning to feel like a semblance of normalcy is returning.

Thanks to all for the thoughtful and supportive blog comments, emails, and phone calls.

Day 8: The great escape

They let us out today -- Dayssi was released from the hospital and 3 carloads later Dad, Mom, India, Dayssi, Dawn, and all of the loot we've acquired from generous friends and family are at HOME! Dayssi's first words were " I want to go upstairs. I think my crib is up there."

She feels really good today and has been in a great mood, flirting like crazy, cracking jokes, and sparkling like her silly self.

We still have our nighttime meds ahead of us -- but Daddy bought some chocolate syrup. Fingers crossed.

Tomorrow we are back at the hospital for another bone marrow biopsy to see how well the drugs are working, and another lumbar puncture to get some more chemo into her spinal column, which they mercifully have scheduled while she is under general anesthesia.

Thanks everyone for the great messages and positive thoughts, prayers, wishes, etc. We feel it.

Dayssi the Fighter

Dayssi shares her Doctor's attitude towards unwelcome lymphoblasts:

Day 6: Part I

Today has been a great day. We have come up with 2 innovations that help us to take the yucky medicine:

Step 1: Take a swallow of Pepsi.

Step 2: Get Dayssi to Gargle (she loves this)

Step 3: Put the yucky medicine in her mouth with the Pepsi and gargle some more.

Step 4: Swallow and follow with another Pepsi chaser.

Step 5: Reward and remove taste of Pepsi with sugerless bubble gum.

Step 6: Go on a tour of the oncology ward to show everybody your gum and proclaim your succesful ingestion of the yucky medicine.

Step 7: Enjoy the effusive applause and cheering then post to your blog

From big sister India, age 5

This is for Dayssi. I hope you get better soon! I love you. Thanks for the monkey from the hospital! You are always in my heart. I'll never stop taking care of you. Love India

Friom Alli, age 8

Get well Dayssi!! I love you! I hope you get better! And be safe, forever!

Days 1-5

On Sunday night our 2-year-old daughter Dayssi was diagnosed with leukemia. Six hours earlier she was a healthy happy little girl with what everyone assumed was a sprained ankle.

Just the Facts

So just to get the important facts out right away:

Dayssi has Acute Lymphocytic Leukemia (ALL) B-precursor. This is the most common - and most treatable form of the disease in children. She is also in the lower risk subgroup (Children 1-10 years of age). In addition, her white cell count at initial diagnosis was 35,000 - below the 50,000 marker for higher risk. Finally, tests on her cerebral spinal fluid (CSF) from a lumbar puncture show no evidence of lymphoblasts (leukemia cells) in her spinal cord fluid - another good indicator. So, in sum, the prognosis is very good. 80% of patients with her profile are-- in effect-cured.

The bad news is that the treatment is both lengthy and unpleasant. She will undergo 1 month of induction (intensive chemotherapy) designed to knock out the diseased cells, 5 additional months of intensification, designed to consolidate remission achieved during induction, and 2 years of maintenance, designed to ensure the elimination of any traces of the leukemia cells.

The History

It was only after an X-ray of her ankle showed no breaks or fractures and we learned that toddlers rarely get sprains that the pediatrician at the PAMF clinic suggested "additional tests," which were probably "unnecessary," but that we would do just to be safe. She would call us if anything came up.

Well about an hour later she did call us and we went in with Dayssi. She described a series of anomalies in her blood work-up. She was tentative and indicated that additional tests would be done, but that she was sending us over to Stanford University's, Lucille Packard Children's Hospital (LCPH) emergency room and had called the hematology/oncology fellow who would see us there. A few hours later additional tests confirmed the diagnosis of leukemia.


Dayssi's Team

Dayssi's primary physician is Dr. Dahl, a professor at Stanford Medical School and a specialist in leukemia.

One of the most comforting things he said, at least as I remember it, was the initial reassurance after he delivered the diagnosis:

"It's just cancer and we're going to kill it."

Dr. Dahl exudes a kind of confidence that comes with 30 years of experience, and having observed first hand (and contributed to) the advances in treatment methods and outcomes. For my part, I found his understated cockiness reassuring.

He is supported by a group of top-notch fellows, residents, nurses and other medical personnel. But the most impressive thing about the care at LCPH is not the technical expertise of the medical folks, but is the social and emotional attention devoted to the children's psychological comfort and well being. There are well-stocked play-rooms, a library with books and videos, and an ever present cadre of child life specialists who do everything from inserting central lines and IVs in teddy bears to educate the child patients to leading arts and craft sessions and reassuring anxious parents.

The First Week

On day 1 Dayssi had a bone marrow aspiration and biopsy. This reconfirmed the diagnosis and provided samples necessary for identifying the subtype of leukemia.

On day 2 she had a spinal tap - or lumbar puncture (LP) to obtain fluid to test for the presence of the cancer cells in the CSF and to give her the initial dose of chemotherapy (intrathecal) just in case.

On day 3 and 4 chemo continued with a variety of medications.

On day 5 (today) she had her central line (a PICC) inserted to provide easier access for blood draws and administration of her intravenous medications.

Overall, today was a good day. The anesthesia was easier, her crabbiness afterward was familiar, and by the end of the day she was walking around and playing with her sister India. Moreover, having her PICC line meant no more painful needles every 8 hours. The hardest thing seemed to be getting her to take the "yucky-tasting" oral medication (dexamethasone.)

All those billions of dollars on pharmaceutical research you'd think they'd find a way to make this simple steroid -- which is perhaps the single nastiest tasting substance known to mankind - palatable.