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.

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.

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.

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.

Busted

Emma broke her arm this weekend. Hairline fracture on both forearm bones of her left hand near the wrist. It isn't a growth plate or a compound fracture. It would heal fine without a cast if she would avoid straining and pressuring it while it is healing; but she is 5. It gets a cast.

Also, here's a great picture of Emma. A friend suggested we get some professional photos done when she lost her hair, and I may start dropping those in from time to time.

Emma started Interim Maintenance part 2 on Tuesday. She had a lumbar puncture with some intrathecal methotrexate, and she had some I.V. Vincristine. We go back Friday for an increased dose. Interim Maintenance 2 is similar to IM1 in that they accelerate the dose until we reach her highest tolerance level or until we hit day 57.

Each dose will be count dependent, therefore, to determine if she is reaching her tolerance levels for the drugs.

Ready to go

Emma's counts are great and we are waiting for the anesthesiologist. There are 2 medicines and a check of the cerebral spinal fluid in today's lumbar puncture. We get today's LP in the RTU... yay!

We are finally getting set up with Home Health. For the next 3 days, a nurse will come to our house to give chemotherapy to Emma through her port. This will be the first time that she will go home with her port still accessed.

Delayed Intensification

Yesterday Emma began delayed intensification. After a couple months of low-dosed chemo and a chance for her body to recover a bit, it is time for intensification, the root of that word being "intense."

Doxorubicin is a tough drug, added to the intrathecal methotrexate and the I.V. vincristine on Friday. Additionally, a return of the steroid, Dexamethasone, which makes her ornery and hungry.

Emma dressed for an OR procedure

Dox is intended to pretty much crash all her blood counts. We anticipate that she will likely need a transfusion within the next week. Monday we will go in for a dose of PEG Asperiginase, as well.

We had her Lumbar Puncture in the OR instead of the rapid treatment unit (RTU) on Friday. I think the OR tends to run more heavy-handed on the anesthesia than the RTU. It took her more time to wake up, and she didn't want to drink for a while and was more grumpy and groggy. Usually we can get out in 3 1/2 hours if there is a back poke in RTU. Friday we arrived at 9:00 and didn't leave the hospital until just after 4:00.

I had kind of forgotten how rough chemo can be. Today, Saturday, was harder for Emma. Our whole family drove an hour to help my brother move into his new house. Emma and the younger brothers had to hang out with Grammy and read stories and maybe enjoy some chocolate milk and donuts.

This was so much for Emma. The ride down she slept. Hanging out with Grammy and also playing with cousins was tiring to the point of exhausting. We wrapped it up and headed for home when Emma disolved over a shortage of sprinkled donuts. That sort of thing might cause a meltdown in other kids, but rarely Emma. 

The chemo look on Saturday evening

 We got home and she gravitated to the couch. She had a long nap, a movie, and wanted to go to bed at 7:00. Thus begins delayed intensification.

Tortilla Trouble

A Lumbar Puncture (LP) is a pretty simple and quick procedure. Primary Children's Hospital developed a Rapid Treatment Unit (RTU) for quick and easy procedures under anesthesia that don't require surgical scrubs, hospital pajamas, or most of the stuff that goes on in OR. It is lower stress and quicker paced than the same-day-surgery, where we have been for Tommy's eye surgeries.

When Emma has an LP, she can't eat for 6 hours before the anesthesia. Friday I had NPO written in bold red letters on the new white board in the kitchen. NPO is a Latin acronym for "Don't feed that kid."

A little before 9:00 she asked me to make a quesadilla for breakfast, which I gladly did while Clinton was packing his lunch. We realized the faux pas after she had eaten half.

RTU wasn't staffed after 3:00, so oncology had to schedule us in the OR. We checked in with same-day surgery at 12:30 where they checked vitals and handed Emma the hospital pajamas for her procedure.

We had our regular check-up with Doug and Doctor Engle. We discussed temperatures and fevers. Even when her ANC is high and her immunity is ok, we must be careful of infections since Emma has a central line: her port. It runs directly into a major vein and, since it isn't original equipment, is a special danger for infection.

Chemo is hard on a body, and some bodies respond to chemo with fevers, even if there isn't infection or illness going on; but a fever is cause for running blood cultures and taking strong antibiotics in case it is an infection.

After our check-up, we headed for the OR. They used the same kind of quick anesthesia that she gets in the RTU; but that is a place of scrubs and hair nets and masks and shoe covers. I left Emma and sat in the surgery waiting room. Though it is a very nice waiting room, I have some tense memories that followed me in. The last time I was there, Emma was getting her port.

After the LP, I met Emma in the recovery room where she watched a movie and sipped at some juice. We got her changed back into her own clothes and she got a wagon ride to the car, as well as a new blanket.

This week we don't need an LP. If we can keep fevers down, we have a chance at a whole week away from the hospital.

Chemo Makes Her Sick

When we started out, the most expensive prescription we brought home was zofran, to combat nausea. I was a little irritated that we had a $215 bottle of medication that she didn't need and wasn't using.

Consolidation features mercaptopurine (MP-6), which is a chemotherapy that is a bit different from the varieties we had during induction. We are now using the zofran and I'm grateful to have this expensive drug in my chemo box.

As we know already, we were in the ER Monday and Tuesday night. Thursday I took our 2-year old boy to Primary Children's for a follow-up on his cataract and scheduled an exam under anesthesia for him right before Christmas.

Friday, my fourth trip to Primaries in a week, we met another Oncologist, Jennifer A Wright. Hehe. That's my sister's name. Emma's ANC keeps getting better and Emma was cleared to go to church. [YIPEE]

Her nearly-weekly lumbar puncture (LP) is a lot like an epidural. Kids don't like needles in their backs and are prone to scream and squirm, so to solve this difficulty, they do LPs under light anesthesia. I left the procedure room with her sleeping and sat down in the hall and - for the first time really since all this started - had a good sobbing cry.

Emma sailed through like a rock star. The anesthesia was a bit heavier than usual and she was pretty doped for the rest of the day. Also, we are working on balancing the laxative; is it balanced if you have both constipation and diarrhea at once? Ah what a miracle it is that human digestive systems usually just work.

Largely, though, she is doing well and usually in good spirits. I love to see that girl smile. Maybe it's with every kid, but the doctors and nurses act like they won some bet or contest to get to see Emma. Doug, Emma's primary oncologist, got after Dr. Wright for snatching his Emma exam when he was getting out of a meeting. Even though it may be part of their approach, I feel like Emma is a favorite for her smiles and giggles.

Day 29

We finished the induction phase.

This morning Emma was super unhappy to miss breakfast, but it's a celebration day, anyway. No more Prilosec, which is decidedly the worst medicine she gets. Its job is to counter the side effects of the Dexamethasone, which we are done with for now, anyway.

She giggled through port access again, today.

Her labs are looking great: the doctors approved Emma to go to her music class (6 other kids in the class) with a mask as long as nobody else is sick. She also does get **Limited** trick or treating for Halloween. Just a few houses, in a mask, and not around anybody sick.

She got anesthetized for another lumbar puncture and another Bone Marrow Aspirate. She was a champ for all of that.

Now we get a week to recover. We expect to hear about the bone marrow in the next few days, and then in November we start the next round. The specific protocol depends on her counts.

Thanks so much to all of Emma's team for supporting us and walking with us through this. One round down. 

First Clinic

9:00 am we arrived for our clinic appointment. Check vitals, and since Emma's port has only been accessed once, and that under anesthesia, we had some kid learning for that. Then the access, for which Emma was  a super star. We met with a fellow and an attending doc. Doug also came by to see how we are doing.
Then we had her Vincristine and started a platelet transfusion.
At noon, the platelets were still running, but it  was time for the lumbar puncture, under general anesthesia.
The steroids are making her HUNGRY, so fasting until then made her a tad bit moody and unhappy. She went through 2 bags of cheetos, a bag of sun chips, grape juice, orange soda, and at least 5 cheeses.
Her heart rate was pretty rapid, particularly elevated for her last week, so we waited a couple hours on fluid before they were satisfied and sent her home.
Lizzy had meanwhile gotten home, gone to a neighbor, and gotten her homework done. That wasn't the plan; but it worked out. I am so grateful for excellent friends and neighbors. So that was our first clinic day.
I thought we were getting into a groove and kind of had this, and today proved that I have nothing at all under control. 

USB Port, Lumbar, Support

First off, we love love love the love notes that are pouring in. That is very sustaining and strengthening stuff.
Yesterday Lizzy visited,  today Tommy came up for a bit. He was not really comfortable with all of it; but he did like the buttons that adjust the hospital bed.
Emma had an echocardiogram today to provide a baseline measure of her heart.  Later she got her IV port,  which is truly like a USB. medicine in, blood out. Whatever is needed, cross platform.
While she was under,  they did a lumbar puncture  to get spinal fluid for testing and they also gave Emma her very first dose of chemotherapy.
Officially,  tomorrow is day 1.
Clinton and I are trading nights at the hospital.  Tonight at about 10:15 I arrived home. The mail was in, the front door repaired,  my dishes washed, my kitchen cleaned, the trash out, toys cleaned up in the family room.
We aren't strong enough to handle this on our own.  We are so grateful that we don't have to.
Tomorrow starts the official Day 1 of treatment.