Ring the Bell

Today is the ending ceremony, first follow up appointment, and her port removal surgery.

She didn't ring the bell last month because she still had oral chemo until Thanksgiving.

Today we started by checking in to Same Day Surgery, then to clinic. It's December,  so Emma got a stocking stuffed with art supplies, nail polish, hair accessories, and such.

Stocking, Play Doh, and Daddy.

Doug checked her over. We talked about the transition to her pediatrician. She got some play doh. Dr. Engle is out so we saw Dr. Verma, who we haven't seen for quite a long time.

Doug is Emma's doctor. Doug frequently wears no socks. I think he looks like Flynn Ryder.

We heard another kid ring the bell before us. There were 3 who finished today, all Doug's patients. Jessica, Emma's primary nurse, says that's the best Christmas present.

Jessica has been Emma's nurse for more than two years. Jessica has mad ninja port-access skills and she is Emma's buddy.

Emma had some time, so she made a couple Christmas ornaments with a volunteer. Then it was her turn. Her nurses came clapping and singing the no-more-chemo song. They gave her some presents- things that they know she likes- wrapped in a blanket.

Crafts, art projects, coloring, painting, and glitter. We love the things that set a children's hospital apart from other boring hospitals.

She rang the bell, danced around, hugged her nurses, and posed for a picture (to be uploaded later.)
 

Some of Emma's nurses and her child life buddy.

We returned to same day surgery. She got into her OR pajamas and we talked with her surgeon and anesthesiologist,  who has worked on both Tommy and Emma.
 

Two IDs: one for clinic and one for surgery

Now she is in surgery, and we return to where we were when I started this blog.

Gratitude. I am so grateful.

EDIT/ ADDENDUM:
Surgery went fine. Dr. Tanner gave her enough to knock her out, but not so much that she wouldn't wake up. The port was pretty entangled in scar tissue, so the surgeon needed two incisions to get it out well and safely, but there it is, on the table.

Power Port. A biological hazard now that it is out. The self-sealing silicone sucks in around the needle, allowing for chemo going in and samples coming out. Fluids going in, antibiotics going in, and samples coming out. What a fabulous bit of engineering and creativity.

I may have had the giggles while Emma recovered. Post-operative instructions included "give her Tylenol or ibuprofen for pain." We haven't given her Tylenol - it's only been administered in the ER after her counts were taken. She hasn't had ibuprofen since diagnosis: it's a blood thinner.

We know quite well that PTSD is a reality for a lot of cancer families. Worries linger. Threats of relapse, secondary cancers, side effects from treatments, survivors guilt, and other worries follow cancer patients and their parents. I have no doubt that those worries will be there; but for now we are feeling relief, gratitude, freedom, and hope.

Threats may loom, but for now, Emma is fine. Tommy is fine. Lizzy is fine. Caleb is fine.

Last IV Chemo

Today is Emma's last I.V. chemo. It is her last dose of Vincristine. She has had Vincristine every month since she started the maintenance phase. From Wikipedia you get the following, which is, I think, fairly accurate.

Vincristine is a chemotherapy medication used to treat a number of types of cancer. It is given intravenously and works by inhibiting mitosis (stopping cells from dividing properly), causing the cells to die.  The drug accomplishes this by binding to the tubulin protein, stopping the cell from separating its chromosomes during the metaphase; the cell then undergoes apoptosis. Because cancer cells divide more rapidly than healthy cells, the drug affects them more.

Most people experience some side effects from vincristine treatment. Commonly it causes a change in sensation, hair loss, constipation, difficulty walking, and headaches.

 Vincristine is a vinca alkaloid from the Madagascar periwinkle Catharanthus roseus (formerly named Vinca rosea).

Vincristine is delivered via intravenous infusion for use in various types of chemotherapy regimens.

She still takes oral chemo until Thanksgiving.  

Today she also starts her last 5-day steroid pulse. If I am very good, I'll post about her last steroid dose.

We scheduled her port removal for next month. 

We ran into Lilly, Emma's friend that has been fighting leukemia nearly as long. In the pharmacy we met David, who we have been praying for since he was diagnosed this summer. 

Dr. Engle isn't in clinic today; but we saw Doug as usual. She always sees two doctors and Dr. Luke Maese was filling in. We haven't seen Luke for more than a year; but he was the on call doc the weekend that Emma was diagnosed. 

It was such a fitting book end to her treatment to see Luke again. Emma did not recognize him. So we asked if she remembers that first week. She doesn't. 

Emma doesn't remember the first week in the hospital. Already she has forgotten. I'm so grateful. 

The first Last

October 16th was Emma's first Last.

She had her last lumbar puncture, or L. P. or spinal tap. Every three months they put chemo into her cerebral spinal fluid and take a sample out for testing. She gets sedated for that procedure. She did well. The doses of Versed and Ketamine were just right: she didn't react or remember anything, but she also didn't sleep for 90 minutes after the procedure.

I'm hopeful that the next time somebody sticks a needle in her back, it will be an epidural on the occasion of welcoming a grandchild to the world.

She has several more lasts ahead of her. Then after the chemo, there are some medicines that she will still need to take for another six months, and she will still go in for blood checks to make sure everything is OK. It will be a month or two before she gets her port removed, so we still have to treat fevers pretty seriously until then.

It sure is great to be winding down, though. When she was first diagnosed, I couldn't see to the end of the week, much less more than two years. And now here we are 25 months later, and nearly done.

Camp Hobe

I haven't posted an update in more than 3 months.

Things have happened. Emma visited clinic every 28 days to get her IV chemo. She had another back poke in the sedation room, and that went really well. Chemo into the CSF, a sample of that fluid for testing, and still no leukemic cells detected.

She finished her second year of music classes and did well at the performance. Here she is with her cousin who was in the first year. You can see how her hair is growing all over.

The Brighton High School softball team invited Emma to come co-captain a game. She got to call the coin toss and her official Brighton Jersey is number 45.

Daddy and Momma went to Moab for 4 days to run a race and to celebrate 11 years of being together. (we skipped #10 in favor of chemo.) While we were gone, Grandma Reeder had to take Emma to the E.R. with a fever. That was pretty dramatic and scary for Grandma.

This weekend Emma had another fever and another E.R. visit. She is doing well since.

One of the really cool things that happens because of cancer is that Emma and Lizzy and Tommy got to go to Camp Hobe. It is a week long camp every June. All the other kids are also cancer kids or cancer siblings.

Lizzy has been talking about camp Hobe for months, so excited. She got to stay overnight last year, all week long. This year Emma was old enough for week-long camp, too. They had their bags packed and were ready to go well in advance.

They swam every day, they rode the zip line and did a ropes course. They did crafts and sang campy camp songs. They stayed in cabins and played pranks. They were slathered in sunscreen, dipped in popsicles, and rolled in the dirt, I think.

Lizzy's favorite camp prank is to write the letter P on a bunch of yellow post it notes, and then put those post it notes all over the same-aged boy cabin, so the boys return to find P in their cabin. Super hilarious, I know.

We picked up the girls and both had friends with whom they need to set up play dates or pen pal arrangements. They can't wait until next summer to see their friends again.

Tommy went to one day of camp and did a lot of the same things. When I arrived to pick him up, he said he didn't want me there and that I should go away because he didn't want to go home. Not bad for a kid who wouldn't speak to anybody or make eye contact during drop-off.

Lizzy is planning to be a Counselor in Training when she is 16. I didn't know that was the timeframe; but Lizzy is totally aware. They get to attend until 3 years past treatment, so with luck we only get to attend 3 more summers. With luck, Caleb will not get the experience of week-long overnight Camp Hobe.

At this point all is promising. Emma has had no unusual or anomalous tests. She is handling her chemo well. Her ANC is kept well below the average person.

We are discovering a pattern. When her system is stressed: when she doesn't sleep in her own bed and eat normal food, or when she keeps going going going sunup til sundown... Under these circumstances that stress her body, she reacts with a fever.

Sometimes there is a virus or something causing the stress; but sometimes external influences bring on the fever. When we left her at Cousins and Grandma's house for 4 nights to go to Moab, she fevered. Camp Hobe... Fever. Last summer our family camp in Jackson featured a fever that prompted a mad dash to Salt Lake so she could be directly admitted.

It might be prudent to avoid all body stresses; but we do have another family camping trip scheduled this summer. This time, though, it is located about 45 minutes from Primary Childrens. I picked the venue to be closer. The pattern is emerging, though, and I would be unsurprised if we don't end up with a fever again.

Cancer is becoming the annoyance that Dr. Engle said it should be. Maintenance is significantly less stressful than the previous phases of treatment.

We are still juggling her daily meds. We changed doses last appointment, so now the med schedule looks like this:

Monday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Tuesday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Wednesday: 1/2 tablet 6MP
Thursday: 1 tablet 6MP
Friday: 1 tablet 6MP, 5 tablets of methotrexate
Saturday: 1 tablet 6MP
Sunday: 1 tablet 6MP

plus 2.5mg Dexamethasone morning and night for the first 5 days of each 28-day cycle.

Simple, right? The only bottles with the correct dosing written on them are the Septra and dex. All the others have previous dosing, so we have to keep it all straight.

She's doing pretty great, though. All the kids are. So there's the update after 3 months' silence.

November Fun, Fingernail Wierdness, and Thanksgiving

Most of November has passed and no new posts. No news is pretty good news in cancer. I have seen a lot of other cancer kids' blogs where they drop off once they get into maintenance.

Brighton High School had a freezing 5-K followed by a Fall Festival fundraiser. The kids loved hanging out with Grady's family and Millie's younger brother. 

They also partnered with our local Chick-Fil-a to split some of the profits on the dinner sales one fine Thursday night, so we went to see our Brighton Buddies then, too.

 

And one more picture of November activities. HopeKids does a movie once a month, and we got to see Big Hero 6 with them at Jordan Commons. The kids loved that.

We had a clinic appointment starting the next 84-day cycle. Those come with Lumbar Punctures. We chose to have her LP in the sedation room again. Dr. Katelyn did the LP, since she is amazing at it. Emma was calling her the Back Poke Queen. The notes suggested a dosage range for the sedation drugs, and I recalled for them that the dose they used was ample and possibly more than needed to get the job done.

Emma stayed asleep for 90 minutes. Sedation is supposed to slow a kid down for about 15 minutes, and they should lie down for a full 30 after an LP to let the methotrexate mix well with the CSF and to reduce risks of headaches.

They adjusted the notes for Emma to use much less of the drugs for her next sedation. I do believe it's genetic. My father and I also respond very thoroughly to any anesthetics. A little goes a very long way for our respective weight classes.

We asked Dr. Doug and Dr. Elizabeth about Emma's fingernails.

They both seemed perplexed. It looks like the old nail died and there is a new nail growing underneath it. I initially figured it was a chemo reaction of some kind, but when they both were unfamiliar with it, I started to worry just a bit over what would make a kid's nails do this.

Another cancer mama saw them, said she'd heard of it, and suggested reaching out for an answer. The cancer mama community has indeed seen it. One mama said her doctor responded to her own kiddo's similar problem with an explanation that the nail bed is a complex matrix and the chemo must have disrupted it. Within a couple hours, five different mamas said their kids had experienced something like it.

It isn't necessarily common, and doesn't seem to be a side effect of any one particular drug, so it wouldn't go on the medication information sheet. I heard of it after a stem cell transplant and during different phases of treatment. So there you have it... the nail bed is a complex matrix.

Cancer is not a great thing at all; but it comes with some blessings. I love the people we have gotten to know through this. On Tuesday, we had a play date with one of Emma's friends so that I could talk with my cancer mama friend. We'll do it again.

Earlier this month I went to an overnight retreat in Heber. 30ish mamas got together at a cabin. Several restaurants catered meals for us. The mama who organized it managed to get quite a lot donated so that it would be affordable. It was so incredibly therapeutic to listen to each other, to relate about this unwelcome horror that we have all had to live with. 

Those are some strong women. We have different interests, different backgrounds, different educations and ages and socioeconomic statuses. The shared experience, though, leads to a level of trust and camaraderie. I am so grateful to know them. They are strong. Their stories and their children's stories are compelling. 

Tomorrow is Thanksgiving. We have so much to be grateful for. I am so grateful for people whose life work, career, and everyday focus is to help my Emma.

I am grateful for pediatric oncologists, for researchers, for nurses, medical techs, and all the medical personnel that fight cancer. I am grateful for Primary Children's hospital. I am grateful for the dozen-plus organizations that we know that help bring joy to sick kids. HopeKids, Make-a-Wish, Millie's Pringess Foundation, NEGU joy jars, ACCO, Anything Can Be, the folks who make capes and gather socks and legos, the blanket makers and pillowcase makers. I am so grateful that technology allows for a free and efficient support group on Facebook - I need that group so much.

I am grateful for good neighbors. I am grateful for a close family. I am grateful for my anonymous cash donors. I am grateful for the friendship and generosity of quiet helpers that impact us so much and don't want to be thanked openly. (you know who you are.) I am grateful for CapitalOne360's contest last year, without which we would be in a very different place with the stress and the budget.

I am grateful for the treatments we do have, and grateful that we still have Emma.

I am mindful of those that are missing their angel children at this time of year. I think it must be awful every day to have lost a child; but this time of year must ache a bit extra.

There are so many things to be grateful for, even in the cancer world.

Not Much New

I am very pleased to report that nothing has happened this week.

Well, nothing medically significant. Emma had her regular clinic appointment on the 17th.

This was Emma's vincristine. The label is a bit alarming. Chemo is concentrated directed poison.

Doug took a look at her spots and said she is not contagious any more and it will take a few days for the spots to completely disappear. He was right... though they are no longer red, there are still spots in the texture of her skin that are gradually disappearing.

She started another steroid pulse.

Luckily, that pill bottle is now empty, and she can finish the withdrawals and regain some personal confidence again. She really didn't want to go to school this morning. Kids might be mean, she might do something wrong, they wouldn't play with her. I hate what dexamethasone does to her emotions.

Otherwise, we are trying to maintain our goals.

Earlier this month, while Emma was in the hospital, our church held our twice-yearly general conference in which apostles and prophets spoke. There was no new revelation, but reminders of things that we need to do better. We picked up a lot of new resolve at that time to do a little better.

Our family goals haven't changed or been erased; but we somehow still slip in our good habits. Remembering priorities can be hard, even when they are written on the wall of the kitchen. We are putting more emphasis on the quality of our family time. We are trying to remember to pray together every single morning before anybody leaves. We are trying to remember that our first most important responsibility/job in our family is to be nice to each other.

Long term maintenance in cancer has some parallels to long term maintenance of life. Forgetting pills invites relapse, and forgetting prayer or other personal discipline invites cancer in the soul. Whether you are of my faith or not, personal discipline is important in maintaining the health of your soul, your character, or whatever terminology you prefer.

Relationships need to be maintained daily through small things. Luckily, though, getting time with family is not like chemo. While chemo is concentrated poison, family time, or parents on a date, is beneficial in so many doses and applications.

First Sedation

Emma finished her first 90-day cycle of maintenance.

Friday the 22nd was the first day of the next cycle, so it included a Lumbar Puncture. Anesthesia has been increasingly difficult for Emma. No reactions or adverse side effects; but each successive L.P. and anesthesia has made her more grumpy and more groggy and more nauseated.

Today we tried the much lighter sedation done right in clinic. No anesthesiologist; just some lighter drugs that allow her to be sedated and loopy; but not actually put under. While she didn't actually enjoy that, she prefers it over anesthesia.

Because of the difference in location, Daddy and I were able to stay with her during the procedure and see how it goes. Doug did the procedure while Dr. Engle sat on the couch with us and talked a bit about the procedure and taught us more Oncology 101. He can't help teaching whenever his mouth is open. I love that every question is answered with an explanation and theory, rather than just an answer. He helps me understand so much of what Emma is going through and how the procedures work and WHY he gives the direction that he does.

Emma did great. On the way to get the boys from Grandma and Grandpa, she talked us into a treat: a can of pringles. She hasn't been so enthusiastic about sweet things for so long. She doesn't like ice cream any more. Chips are her favorite treat, and to choose her own can of pringles is a pretty big deal.

Maintenance Begins

On Friday Emma had such a big day that I have to make two separate posts. First I want to explain just a bit about oncology studies, and then I will explain what maintenance will look like for Emma.


STUDY
We have agreed to participate in every study that has been offered.

In one study, they are simply tracking each cancer patient and gathering information about race, gender, age, location, and stuff like that. This gives them statistical information, so that we can know how many kids get cancer, what ages are most common for which cancers, Caucasian kids are at slightly less risk of getting leukemia  than Asian kids. Stuff like that.

One study is mapping Emma's genes, my genes, and Clinton's genes. Nobody knows why kids get Leukemia, and they are trying to identify genetic markers, or mutations. Can our genes tell them anything? I think they will look at Emma's genes compared with her parents, and also look for similarities among other kids on the same study. I don't know, but I hope that they find something that helps kids in the future.

Another study regards treatment. So many kids get ALL that they can get a good sample size when tweaking treatments. Childrens Oncology Group (COG) hospitals follow a certain protocol, and that is just ever so slightly different from St. Judes. Both of those vary a bit from European oncology protocols. They all use the same medicines; but at certain points the dosage or the frequency may vary. Emma's treatment study deals with the maintenance phase. They take the study from things other children's hospitals are doing.

They are doubling the dosage of methotrexate for certain kids on study to see whether the incident of relapse is affected at all.

For another set of kids in the study, they are giving one of the medications quarterly instead of monthly. If they see no measurable difference in outcomes, they may begin giving that med quarterly instead of monthly.

For another set of kids, they are BOTH doubling the methotrexate AND giving the one medication quarterly instead of monthly. Again, any difference in relapse rates or other affects may alter future treatments.

A fourth set of kids are the control group, and they get the same maintenance that is current COG standard procedure.

Emma was randomized into the control group. So all those things that they might do... not doing with Emma. She gets the standard practice.

MAINTENANCE
Maintenance is the last phase of treatment for ALL. There has been no detectable cancer for a few months and the different rounds of treatments have killed off the hidden pockets of lurking cells.  Maintenance is the time when we maintain that cancer-free status. Over the next 18 months, her therapy is designed to keep her blood counts within a certain range. She will have suppressed immunity; but not complete lack of immunity.

The target ANC is between 750 and 1500. If she drops below 500, then we take a break until she is back up into the target range. If she gets above 1500, then we increase doses to get her back down into the target range.

She will take MP-6, also named mercaptopurine, every day until November 2016. It depresses counts and it also limits certain enzymes that cancer cells need in large supply. By limiting the enzyme, it denies any latent cancer cell the opportunity to multiply. Over 18 months, this should get rid of any lurkers.

Every week she will get methotrexate, on Fridays. When she has an LP, she will get methotrexate intrathecally. When she doesn't have an LP, she gets it in a pill.

The first five days of each 28-day cycle, she will take Dexamethasone morning and night. This is the steroid she has had before. She has been taking it since Friday. She is moody and irritable and hungry and picky. We will do this every 28 days for the next 18 months. I am imagining a 5-year old with PMS, and that thought is just a teensy funny and helps a little. The funny will likely wear off pretty quickly.

She will also get Vincristine by I.V. each month when we go to clinic.

There will be monthly blood draws to check counts. The doses will be adjusted as needed.

The same rules apply as before with fevers and illness. She will begin Kindergarten in August. We will get a letter from the doctor that should exempt her from the immunization requirements. She won't get those until six months after she ends treatment.

And there you have it, the final phase and what life looks like for the next while.

Friday - the other stuff

On Friday Emma had a big day. I'm going to tell about everything except Maintenance, since that is enough information for its very own post.

Primary Children's Hospital has a lot of wagons, wheelchairs, bikes, trikes, and toddler pedal cars. The bikes, trikes, and pedal cars mostly stay in units. Wagons are used within units for sure; but they get a lot of mileage discharging kids, and there are usually a few wagons near the entrance, as well as wheelchairs.

Since Emma has the broken leg and needs to stay off, we got into the hospital and let her choose the chariot for the day. She chose a red and green wagon. I should have taken a picture at some point; but alas! Daddy took the day off to come to Emma's appointment. He usually comes when she starts a new phase, and he really wanted to be there for the last phase - Maintenance.

BUSTED LEG
In the midst of our normal consultation, a pair of orthopedists, Chris and Zach, came in to take a look at Emma's leg. They trimmed her fiberglass brace down to allow her knee to bend and then re-wrapped. They didn't put a cast on because there is still some swelling from the original injury. She will get a cast on Wednesday; in the meantime, no weight or pressure, and keep it in the brace except when bathing.

COUNTDOWN
We know the end date. Emma will finish treatment November 27, 2015. Barring relapse, that is the day she will ring the bell, signalling the end. I could probably put some ghastly animated gif here to express the excitement of that statement; but I will spare all of us.

LUMBAR PUNCTURE
Yes, the lumbar puncture is part of maintenance. Her last LP was a bit rough. She was really nauseated when she woke up. She threw up a few times and was groggy and grumpy the rest of the day. This Friday, she was nauseated again. The nurses helped her avoid throwing up; but she didn't eat anything or drink anything after.

Because there was so much to do before her scheduled LP (orthopedists, paperwork for study, order correct chemo based on study randomization, explanation of maintenance, port access, etc.) Emma had to go back to clinic to get her chemo after our LP appointment.

She was wrapped in blankets and looking miserable in her wagon. Our superstar oncology nurses were pretty concerned. They found some life savers to help mask the taste of the chemo, saline, and heparin that she was getting through her port.

Becky suggested that we try the sedation for her next LP, so we checked out the Sedation Room. There are the 3 places you can get a LP: Same Day Surgery, Rapid Treatment Unit, and Sedation.

SAME DAY SURGERY
This is the place where all the kids come for surgery, whether to get a cataract removed, an Atrial Septal Defect repaired by the cardiologist, a compound fracture set and pinned, a port placed, dental surgery, and so on. All kinds of things happen here, and the process is set up for major surgery. When she gets an LP in surgery, we register in the waiting room, Emma changes into hospital pajamas, the anesthesiologist takes her at the good-bye door. The doctors are all in scrubs, and the parents wait in the emotional surgery waiting room. It's a bigger deal. The recovery tends to be longer, the anesthesia just a bit heavier, and the kid is groggier. This is where we go if RTU is fully booked.

RAPID TREATMENT UNIT (RTU)
Twenty years ago, the folks at Primary Children's Hospital were looking for a good solution for the large number of kids who needed fairly quick, simple procedures. These are the kinds of procedures that adults probably wouldn't be sedated for. Kids are squirmy, wiggly, and tend to get anxious or apprehensive, though.

A Lumbar Puncture takes less than 15 minutes. In practice, it is a lot like an epidural. The doctor pokes a needle into the spinal column, removes just a bit of cerebral spinal fluid for testing, and then injects some chemotherapy. When it goes slick, the procedure itself can take a minute or two. Five including scrubbing the poke site and putting on a band-aid afterwards.

We take her in and set her on the bed. I hold her hand while the white medicine goes into her tube, and then as she falls asleep, I kiss her on the head and go wait in the hall or maybe grab a sandwich in the cafeteria. It's pretty quick.

I've had epidurals, and I get squirmy for them. It makes sense to sedate a kid briefly; but it doesn't warrant scrubs, hospital jammies, and a sterile operating room. Sterile instruments, obviously, and a clean bright room, sure. The RTU is great for exactly this kind of thing. We love the RTU.

SEDATION
Nurse Becky showed us the sedation room. We have heard of it, and we will do it next time to see if Emma handles it well. Sedation is a slightly large exam room. Our own oncology nurse would administer the appropriate drug that would make Emma sleepy - ever so light and quick. She would be a bit loopy after. Becky says the absolute longest any kid has been out was 15 minutes - usually closer to 5 minutes. Then the doctor would do the LP. Mom and Dad sit in the room and watch the whole thing.

To be a good candidate for Sedation, though, a kid has to be a bit less anxious and a bit tougher, since it isn't complete anesthesia. Our nurses think Emma would probably do just fine, and it's definitely worth a try since anesthesia is beginning to cause nausea, grogginess, and super intense grumpiness.

It will be 3 months until her next LP. That is fine by me, and then we'll have a story about how well it works.

In clinic

A month has passed since my last post. 

Emma is doing great. The cast came off yesterday. 

There isn't much to report about the month. Today she had both Methotrexate  and Vincristine by IV and also intrathecal methotrexate. Her ANC is 1900 and she has gone to church. The little bit of hair is starting to grow.

Initially, there was so much to say. Cancer was such a shocking change to our lives and presented such a paradigm shift. Now a month has passed with not much. This is normal, now.

I have started reading David and Goliath by Malcolm Gladwell. It contains a chapter about the pioneering oncologist who developed much of the protocol that Emma is taking. Truly fascinating and horrifying and empowering to learn.

I mentioned it to Doug, Emma's oncologist, and he recommended another book, The Emperor of all Maladies. 

I couldn't emotionally take reading about cancer a few months ago; but now I am eager to get the book Doug recommends. 

Did not make counts

Emma was scheduled for a Lumbar Puncture today, and to start the second half of Delayed Intensification. The first half was rough, leaving her tired, flushed, lethargic, and a bit grumpy.

 She did get through this month without a transfusion. I'm delighted with that. That's several hours she didn't have to sit in clinic getting blood or platelets. Also, that's a huge win since our insurance doesn't cover blood products. {I know, right? Blood is clearly cosmetic, rather than necessary.} The paranoid part of me wonders if the chemo is doing its job if she didn't get a transfusion; but I try to keep that worry under control.

After a week of recovery, she is sporting a new look and back to the happy giggly Emma.

 

Today's treatment is count dependent. Yesterday we went to the lab to get a blood test. This morning we got the results: her ANC is 300. That is low. Today's treatments are put off to next Friday instead.


Delayed intensification is, well, intense. Dr. Engle tells us that the object is to crash her counts and to make her sick enough to root out any lingering hidden pockets of leukemic cells. One remaining bad cell in her entire circulatory system or in any marrow in any bone could trigger a relapse. Once we begin a segment of delayed intensification, we don't stop unless there is a serious threat.

In order to start, she needs to have high enough levels. It reminds me of a bit from the movie The Princess Bride. The hero lies in the pit of despair being healed of his wounds, and the Albino tells him, "The prince and the count always insist on everyone being healthy before they're broken."

Still loving the Raspberry Fingers. Thanks Grammy.

Fun to compare, this is an old Raspberry Fingers with evidence of the month-long steroids on her face.

This next segment, the one Emma isn't starting today, will include many drugs she had during the consolidation phase. It will add one more, as well. A common side effect of this new drug is fever. Therefore, while crashing her counts, she will be prone to fevers.

When she gets fevers, we go to the Emergency Room. When she gets fevers with ANC below 500, she gets admitted for hospital stays. This will make March a slightly stressful month for our network of helpful family, friends, and neighbors who can watch Caleb, Tommy, and Lizzy.

They say that this is going to be a rough month. On the other end is maintenance. It will take some time to balance her maintenance doses; but reportedly, life will start to get a little bit normal then.

For now, we're praying that another week of recovery will have her ready to take on the next segment.

Peg Delays

Delayed Intensification started out much harder than the interim maintenance, and Emma was tired and moped about with flushed cheeks.

Monday Emma went in to clinic for her PEG Asperiginase I.V. chemotherapy. As we sat waiting for the pharmacy to fill the order, Emma's face got redder and she looked miserable. Dr. Afify thought she looked a little bit like the reaction to PEG though she hadn't yet had the I.V. and we were sent home to see if she was thinking of having a fever.

Tuesday we arrived and she looked stable, so she got her PEG. She had every part of a fever except the temperature. She did well, though, and we got home for late lunch. My sister Sarah was angelic enough to watch the boys for two consecutive days' appointments.

Tuesday afternoon I was at my wits end and needed to take Lizzy to the doctor for her follow-up, and she and I were not in a happy place. My sister drove up just as I was loading the kids in the car, and she took the three littles home. Thanks Jen.

One of the many possible side effects for PEG is blood clots. I got a little paranoid on Wednesday about a dark vein that I hadn't noticed before, particularly after Emma said it hurt. She said that it made her not want to walk. I called clinic and they said they better take a look, so we went in to the clinic again Wednesday. Thanks to my neighbor, Emalee, for watching the boys while I panicked.

Luckily, I was paranoid and Emma was fine. No evidence of blood clots.

Happy New Year, and YIKES: New Plan Year

Emma had fabulous Holiday weeks.

Christmas was amazing and beautiful. All the kids were delighted with their toys and gifts.

I had been worrying about Emma's ANC, and afraid we couldn't take her to things. Doug said to forget the worry and go to Grandma's, so we did. Well, we didn't completely forget the worry; but we let it go for a bit.

Some cancer kids had their last Christmas. Some kids will be diagnosed this year and won't make it to their next Christmas. Sobering and horrid words in a blog dedicated to seeking out the positive; but those are facts. Worse still, we will know some of them. We don't plan on losing Emma; we plan on many Christmases yet to come.

We enjoyed Christmas like it would be our last, though. We went to Grandma's house Christmas eve and we opened presents and played with cousins and stayed too late and laughed too hard and ate too much. When we dragged our tired kids into the house, we kept them up to open the pajamas present.

Christmas morning, Santa did not disappoint. We played together and enjoyed the morning. Grandma and Grandpa came to visit along with Aunt Aleigh. Then we went to my sister's house for Christmas dinner with more cousins and Grammy.

Making Cookies with cousins at Grandma's house a few days after Christmas

We didn't even put a mask on. We lived it up. Had anyone been sick, we would've gone with a mask; but we would've gone.

The 30th was clinic and I didn't post about it. She did great. Her ANC stayed up after the previous dose, so they were able to escalate her methotrexate.

Dr. Engle's theory is that some kids' first dose of IV methotrexate totally shocks the system and crashes all the counts. The kiddo's amazing body takes a couple weeks or more to figure out what to do and how to metabolize this nasty poison, and their counts recover. The next dose of IV methotrexate isn't as shocking, and they handle it just fine.

Waiting for the lumbar puncture and playing with Polly Pocket Princesses

This explanation makes sense to me and seems to jive with the notion that they escalate the dose on this drug to reach the maximum level that the kid can tolerate in a 57-day protocol.

Additionally, Emma had intrathecal methotrexate in another lumbar puncture. She tolerated it like a champion.

New years eve at about 2:00 in the afternoon, we decided we had better celebrate the holiday. We made a few calls and found my sister and her family were up for some fun. Cousins came over to spend the night while the mommys and daddys played games and stayed up until 1:30 welcoming 2014.

New Years Day, my oldest sister flew in from Oklahoma. I think she deserves her very own post. As we were leaving the airport, Clinton called: Emma had a fever.

After an hour, her fever reached 101.2 and Clinton took Emma to the Emergency Department on the first day of the new insurance plan year. We will reach our deductible and our out-of-pocket max this year; the question is when. We made a nice start.

The ER was pretty busy. They gave Emma Rocephin and a bag of fluid. The novelty of the ER is beginning to wear off, and Emma is less and less happy about going. She did great, though, and was happy to get home and into bed.

Goals Update

First off, Clinic on Friday was pretty good. We love Doug. We love Dr. Engle. We are so happy that those two are Emma's primary doctors and we are glad when clinic days are Friday. Also, Daddy got to come to clinic, which is a real treat.

Dr. Engle explained about the Methotrexate IV. He said that some kids' counts crash with the first IV methotrexate and the body figures out how to process it. Some tolerate all the following doses through the rest of treatment; just the first dose shocks the system. The goal with the increasing dose over two months is to get to the highest point that the patient can tolerate - to make them sick.

That's chemo's job: to make you sick. It is killing the cells that spread cancer. Once the body figures out how to metabolize the chemo, they escalate.

Emma is enrolled in a lot of cancer studies. One through Huntsman Cancer Institute is mapping the gene sequence of Emma and Clinton and me. Then they can compare Emma's DNA with her parents' DNA and see what there is to learn about it. Are there genetic factors? Did her DNA mutate? Can they find a cause for leukemia somewhere in the genetic code? Julie from Huntsman came to draw blood from Clinton and me, since that hadn't yet been done.

I cringe at blood draws. Julie had to poke Clinton twice, and he laughed during his blood draw. There's a genetic tie: we now can guess why Emma laughs in the face of needles.

Our buddy Maddie was in the infusion room getting some blood, so we got to chat with her and her mom. While I was talking, our nurse Kristin employed her mad ninja skills to get all Emma's chemo in and her port de-accessed without me noticing.

Another buddy, Braelyn, was inpatient with fever and low ANC, so we dropped in to visit them, too.

Cancer isn't necessarily a social thing; but we're making friends.

Back in September when Emma was diagnosed, we made some goals.

About a week after we brought Emma home from the hospital, we stuck a white board up in the kitchen. I'm not a schedule keeper. I don't take my vitamins on time. If it weren't for school being so consistent (imagine: they start at the same time every single day. Weird.) we would not do anything according to a schedule. Chemo has to be administered on a schedule.

Along the top of the white board I distilled our four goals for Emma's cancer journey. I can't control how Emma handles treatment. I can't personally prevent fevers, complications, relapse, or any of the frightening possibilities. There is a lot outside our control.

We do get a say in whether our family pulls apart or whether we grow together. Clinton and I get to decide whether we will join a horrifying statistic - 80% of parents of cancer kids get divorced. That's a mind-blowingly unbelievable statistic.

Also, a lot of people going through serious major stresses frequently distance themselves from God. To paraphrase Jeffrey R. Holland, when storms rage and the sea is choppy, don't get out of the boat.

Cancer takes a lot of casualties beyond physical lives. It doesn't just kill, it leaves a mess in its wake. The fabulous doctors and nurses are responsible to fight cancer in Emma; and Emma's team fights the collateral damage that it causes.

Clinton and I are going out a couple times a month, and we're talking a lot about our feelings, our relationship, and keeping tabs on each other. We are making scheduled one-on-one time with Lizzy and Tommy. Caleb, being 10 months, gets an appropriate level of baby snuggling. We're trying to double down on faith-building priorities, especially since Clinton and I have to take turns frequently staying home with Emma when counts are low.

We're still focused on these goals we set in the hospital in September.

She Made Counts!

Emma's ANC is 1900, so she can have her scheduled chemo today. YAY!

We went to the lab yesterday and the lab techs both said "Hi, Emma," without looking at her lab sheet. Yep, we're regulars.

She gets both her vincristine and her methotrexate. We are hoping that all goes well.

Emma gets to take some toys to donate to the hematology/oncology clinic for Christmas. Emma's favorites are polly pocket princesses and play doh, so that's what we are donating today. They can clean and re-use polly pockets, but play doh is a one-use item, so we're taking a big pack. Also, we discovered a few weeks ago, the clinic can help with underwear changes due to donations. Since Emma got to use that service, we're taking in a 9-pack.

Still Low Counts

Today was our first Tuesday clinic and it was way quiet. Emma's counts are up after the double transfusion; but her ANC is only at 300.

The vincristine is going to be steady through interim maintenance; but the methotrexate is supposed to increase depending on counts. The counts are still so low that there was no methotrexate, though she did get her vincristine.

There is not really a great time to have low ANC. There is no good time to have cancer. It is particularly rough to have holiday outings with family threatened and cancelled. Dr Fair, Doug, explained that a cold isn't going to cause her serious damage; but fevers will put her in the hospital.

If she does get an infection, well, that's the big worry. That's why fevers are treated so seriously.

Blood and Platelets

Emma's pale face may not always register, since Momma and Daddy see her every day. Maybe she has been extra pale over the last few days. She definitely had some new awesome bruises. Add a couple nosebleeds and we made a phone call.

Emma was planning on a blood count at the lab today in preparation for chemo tomorrow, but we came to clinic instead in case she needed platelets. 

As it turns out, Emma was particularly sensitive to last week's methotrexate.  All her counts plummeted.  For another first,  she needs both blood and platelets today.

Emma's ANC is low:100. A couple weeks ago she topped out at 9000. Below 500 is really low. If she gets a fever below 500, she is admitted to the hospital.

She won't get chemo tomorrow... it will be Tuesday,  instead.

Port access was great. Dr. Afify is great. We met another therapy dog: Roxy. Transfusions take enough time to chat with other kids and families,  to do a craft or two,  and to catch a couple Barbie movies.

Interim Maintenaince I

We started a new phase the day before Thanksgiving, even though the last day of Consolidation is Thanksgiving. We would have begun Friday; but who wants a cancer clinic visit in the middle of the Holiday weekend? So we overlapped a couple days.

We met Dr. Afyfy who examined Emma, answered questions, and explained the next protocol.

Consolidation had a daily oral chemotherapy and several lumbar punctures. Emma needed her anti-nausea Zofran. One morning she took the last Zofran dose in the bottle, and I called the pharmacy for a refill. When I talked to the Pharmacy tech a few hours later, she apologized; but my insurance wouldn't cover a refill until tomorrow. We could pay out-of-pocket, though.

That's a $230 bottle of 50 miligrams of pharmaceutical miracle right there. We waited. She didn't get her bedtime dose. At 4:00 am she threw up. At 4:10 am I called the pharmacy (grateful for 24-hour Walgreens) and they ran the insurance again. It cleared as payable, so at 4:30 I was at the Walgreen's drive-thru window.

Other than those dramatics and the complete unbalance in her digestive system, we managed consolidation relatively smoothly.

The first Interim Maintenance (IM1) doesn't have any home chemo at home; so I will have a heart attack every Monday for the next eight weeks when I realize that she hasn't had her Septra and it's already lunchtime. Septra is a drug with crazy potential side effects that keeps her from getting pneumonia. Chemo suppresses the body's ability to prevent a certain strain of horrible pneumonia that can easily kill an immunocompromised kid. We take it Mondays and Tuesdays for the duration of treatment.

What IM1 does have: Clinic appointments every 10 days, working around weekends... depending on her blood counts. It will not be really easy to plan that out in advance on a calendar.

In those appointments, we will have vincristine and methotrexate. The methotrexate dose will escalate each time. She will have one lumbar puncture in the middle of the phase.

IM1 syringe stack

If she makes her counts every single time, it is an 8 week protocol. When she misses counts, she may proceed without increasing the methotrexate, or she may delay 4 days and do counts again. So minimum 8 weeks and possibly a bit longer.

The photo was when the nurse sat down to administer the first batch of chemo for IM1. To be fair, half of those are saline flushes; but still. You might get an idea of the advantage to having a port rather than sticking that all in by needle. Further, Vincristine is really damaging to tissue and has to be going into blood, not tissue. After all, we want to kill the cancer, not the kid. Yay ports!

And just as we were going to leave, Stuart Edge brought his magic movie making, so we stuck around to get in on a youtube video, which I shared just before this entry.

Gold vs. Pink, After a Link

First, update: Yesterday clinic was great. Much like last week, except that I remembered the numbing cream. Emma giggled through port access, which means that Becky is a great nurse and Emma is a brave girl to giggle in the face of needles.

That's a little creepy; but such is our new life.

Her ANC is a measure of just how much she is at risk of infections or illness. It was higher than it has been since diagnosis, which is really good. She ate Macaroni and Cheese while waiting for her chemo.

Today, the day after, she is totally tired. That is a pattern: tired after chemo and bigger swings in the big moody mood swing.

In other news, Emma is walking more and seems to be in less pain. This is incredibly good and positive nd joyful.

Second, I have a couple links that are encouraging to me today.

This article helps me hope that Emma will mostly forget the awfulness of cancer.

And this article, written by one of our nurses.

Third, September was childhood cancer awareness month. Gold, by the way. October is pink for breast cancer. I have joined a Facebook group of Cancer Mommas. There are some Mommas who are sad to see all the pink because the world didn't go Gold for our kiddos last month.

You see it: pink yogurt lids, ribbons on all kinds of products from oatmeal to clothing. Pink ribbons on airplanes, billboards, and NFL jerseys. Susan G. Komen is a busy, busy lady.

I am very close to a breast cancer survivor, and very close to a breast cancer victim that didn't survive. I can't be mad about the pink. I honor my dear, dear friends and I hope for better treatments and a cure for breast cancer.

I hear that Orange is for Leukemia. I haven't seen that official. I don't think Emma is any  less loved if you put on some pink today. Love grows as you give it away, so love the pink, and share a little extra love with your coworkers, friends, family, or roommates today in honor of Emma.

Friday Transfusion

Emma had a platelet transfusion Wednesday, so I didn't suspect low platelets, the typical culprit in bloody noses. One in the evening and another during the night. Clinton elected to work from home in case Emma needed to go in. The boys would be fine watching movies and trying to distract him a bit.

After three 15-18 minute bloody noses, we called the clinic. "Come in," they said. And then she had another bloody nose. They ordered Plateletes for her just in case she needed a platelet transfusion.

It takes a bit of time. Think of any doctor's office when they "fit you in." Waiting room, vitals, room number 5. Tell the nurse why you're in and discuss symptoms. Right?

Port access is a sterile procedure that takes a few minutes. Take the  blood sample to send off to the lab. Wait a bit for the doctor. When he comes, go over the current symptoms. How to handle bloody noses, try Afrin, use it this way, not too much. Like this.

The labs came back, and sure enough it wasn't low plateletes; however, her hematocrit was pretty low and they recommended a full transfusion. For that, though, she needed her blood types and cross-matched because they do it every time. That took a couple hours, and then her blood was ready. They take a couple hours to give blood because it would be bad to shock the system. After a transfusion, they need to watch for adverse reactions for at least 30 minutes.

10:30 untill 4:30. That's a full day. I am so grateful that Clinton's job allows him to work from home while supervising the boys' naps, movies, and meals.