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.

Magic with Emma

Magic Stuart came and introduced Emma to her new puppy, Lily. This is the second stuffed doggy named after her cousin. Stuart Edge is a local YouTube producer.


It was a fun diversion at the end of her clinic appointment.

New Address

Mom made a decision to rock the boat, upset things, and ruffle the feathers. For several reasons, I am moving Emma's site.

Previously we have hosted her site at caringbridge.org at the recommendation of a Primary Children's social worker. Caringbridge is great for someone who hasn't blogged and isn't really super tech savvy; but I wanted the control that I could get with  our new site here at princessemmareeder.blogspot.com.

I am sorry to upset the fine balance; but here are a few good things about the new address:

• I get more control of the site
• You can search by topic... my keywords are at the bottom of each post
• I can share more than one photo per entry
• You can leave notes still, but by entry rather than all in one spot... until I figure out how to have a guestbook on blogspot
• You can still get an email update when I post a new entry; but you have to set it up again using the first item on the right
• No ads or solicitations 

And there you have the latest plan.

Christmas Tree

On Saturday afternoon, the youth council from South Jordan City knocked on our door and brought in our Christmas tree. I can't begin to say how much this means to us.

In they came, the tree and our new friends. While one strong man carried the tree, a couple of the teenaged friends picked up a few ornaments that dropped. Krystal Hansen, who arranged to bring it to us, cut the wrappings off. One of the friends picked up Lizzy so she could put the star on top.

They plugged it in, sang carols, and left us with PEACE and JOY and HOPE and LOVE.

We hadn't told the children that the tree was coming, and I was so overcome with the magic that I forgot to watch my children's eyes. They bounced on the couch and asked questions and were really excited for the tree to come.

Once the South Jordan Youth Council had gone and I finished crying with Clinton, I headed for the kitchen. When we set up the tree, there must be crackers and dip and egg nog and a bit of a party. I had the makings in the house; but I hadn't really planned to start up a party. It just seemed the right way to welcome a Christmas tree.

We've been playing carols since. The kids have been playing with the ornaments, rearranging them on the tree. Caleb and Tommy roll the bells like cats with bell-balls. Thanksgiving is yet to happen, and yet, it is time for the tree. Just this once.

I am so grateful for the kindness and love and giving of Christmas. We have never pictured ourselves as the family to be given a tree. We have always given to Sub-For-Santa and Angel Trees and the Salvation Army Bell Ringers and any other Christmas Time charities. Few things are more delightful than doing Santa's work. I love being an elf. I know the joy of giving, and I am humbled to have switched places. We are truly grateful. Thanks South Jordan!

Youtube love for Emma

My cute Sister in Law and Brother made this video for Emma. They showed it to us a bit more than a week ago, and I am sharing the youtube link with all you. It sure makes me happy.

Guess Where We Are

Evening.
Not at home.
Just Emma and me.
Unplanned.
Some new faces.
Some poeple we recognize.
Emma is watching a movie.

Did you guess the Emergency room at Primary Children's?

You are really good at this game.

SIBS

Each year Primary Children's Hospital puts on a workshop for Super Important Brothers and Sisters, SIBS. Lizzy went and had a marvelous time. She was happy and played with other kids who have seriously ill brothers and sisters.

She painted and she made a life-size Lizzy portrait of what she will be when she grows up. She wants to be a Mom. Lizzy enjoyed it. I'm so glad that Primary Children's puts so much effort into the non-medical healing for children and their families.

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.

ER+O2

At 5:30, Emma was on the couch under a blanket, looking out at the world with blah in her eyes and pink in her cheeks. Temperature: 100.7

Rats.

The next 90 minutes showed a low of 100.2 (while the other ear was 100.6) and a high of 101.3. I delivered my materials to my 7:00 meeting and excused myself, went home, and called the on-call oncologist who said, yes, even if we are in a pattern we need to come to the ER.

This time her vitals indicated the use of oxygen to get her red blood cells something to deliver to her cold toes with unsatisfactory capillary refill. Emma did NOT like the oxygen. No really, she hated it.

Needles, no sweat. C/T scans, no bother. Anesthesia is a snap. Blood draws and port access are OK. Blood pressure doesn't even hit her radar. All the monitors and stickers and snaps and bracelets and such are just fine. The hose of oxygen, though, brings her to tears and crying. A Child Life specialist came and distracted Emma with an iPad and a game; but when Emma seemed happy and the Child Life Specialist needed to go see other kids in the ER, Emma fell back to weeping. We did manage to get her into a movie that brought the weeping to just a very sad face.

I'm not used to a sad face unless we're taking yucky medicine, and the sad face goes away pretty quick. They seemed to be debating whether to admit her, but they decided that we could take her home. This is really good, because I had forgotten to get my chargers and overnight bag.

The ER staff is starting to look familiar and to recognize us.

ER Frequent Visitor Card

I wonder if they have a punch card or maybe patient-of-the-month parking at the Emergency Room. Emma had a fever yesterday late afternoon and her Daddy took her in to the ER. Emma's ANC is rising, and all her blood counts were good. With cancer, though, you have to take fevers seriously. If she got fevers early in the day, we could go to the clinic for this; but evenings they send us to the ER.

Some folks on Facebook are sharing something they are grateful for every day. November doesn't have enough days to even hit the big ones for me. I am grateful we have insurance, because a week in the hospital and 4 ER visits this month, plus weekly anesthesia and chemotherapy and transfusions all together must come to a price tag that doesn't bear thinking of. High deductible isn't so bad when you consider where we've already been.

I am thankful for the small army that watches my kids during all these appointments for leukemia and cataracts and ADD and cardiology. I am thankful for well wishes and cards and packages and blankets and gift cards and a "few bucks" for gas. My sister tells me that 3 "medium grade crises" combine to make a big crisis. She may have a point.

I am thankful for my husband. We work together. We are a team. We are determined that we are coming out of this with a better marriage, and I am so grateful for him.

I am grateful for our four kiddos, without which there wouldn't be quite as much medical drama, and who provide me with purpose and joy and meaning in everything I do. They enrich everything worth doing.

I am grateful for the crowd of folks who visit this site and read my ramblings and take an interest in the drama that is playing out in our lives right now. Emma is doing pretty well today. I expect that we won't be punching our ER card tonight. For that I am thankful.

Caring for the Caregivers

I gotta shout out to our awesome family that takes such care of us. Friday after melting in the hospital hallway, it was clear that our night-out couldn't come soon enough.

Clinton's folks gave us a pair of movie passes, my Dad sent me a gift card to the Cheesecake factory, and Emma's Aunt Aleigh was in town from California and generously watched the kids and sent us out for the evening.

Emma was cleared for church, and she earned a lot of looks and smiles and comments. After church, we headed for my Mom's for dinner where we caught the premier of Emma's own support movie. Cousins, aunts, uncles, and grandparents combined to make a 5-minute love note of inspiration and support.

We are so grateful to have such a great support network to hold us up and love us. Thanks for loving Emma and for loving her family.

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.

Hot Stuff

And we did end up at the ER with the fever for more antibiotic, plus blood draw, urinalysis, and that sort of thing. Got home at about 11:30 with a tired little girl that has a normal temperature.

ER again

Written Nov 5, 2013 5:41pm

After the last post about the sickies, can we be surprised that Emma came up with a fever? It was cold and she was snuggled under a blanket, so it took me a bit to notice the pink cheeks and general malaise. (That's a new vocabulary word.)

At 6:00 I took her temp. 103.1. I might have said a naughty word. I called the on-call oncologist, who needed to be paged. I called Clinton and got voice mail as I was tossing my warm slippers and Emma's toothbrush in the "go" bag. (note to self: get a "go" toothbrush for Emma.) I texted him: "temp 103. come home." I called again, and he sent me to voice mail again.

I tossed my phone charger and tablet charger in my bag and called a neighbor. Clinton called back and said he would be home in 20 minutes. Sylvia walked in the door as I was tossing a sandwich and water bottle into my bag. We passed Clinton just before the freeway.

At 6:40 the oncologist called back, having been with a patient. She said to go to the ER, and I told her I'd be there in 10 minutes.

Port access was great. Not all nurses do great with ports; but ours thinks they ought to be installed at birth and continue through death since they are so obviously superior to regular vein access.

Emma got an antibiotic and a lot of fluids. They gave her Tylenol to bring down the fever. They took a virus culture (negative) and a pee sample. Her blood counts were terrific - ANC being 5100. 500 is the border for trouble, and Emma's last lab was 2000, so this is a huge uptick.

Her heart rate wouldn't settle for a long time. Temperature eventually got down to warm instead of feverish, and because her counts were so good, the oncologist sent us home.

The trouble is that the fever has been tylenol-controlled all day. The antibiotic is good for 24 hours. She got the antibiotic just after 7:00, so really no more Tylenol after about 5. If she continues this silly fever after about 6:00, the antibiotic expires and we're having another conversation with the on-call oncologist.

Wish us luck and hope this fever gets itself under control.

Sick Siblings

How do you keep them separate? I've got one with a pretty steady fever over 18 hours. I've got one that pukes. (gross) And I've got a fussy clingy baby without symptoms beyond fussy and clingy. And I've got little miss Leukemia.

Emma slept in the living room, and we're trying to keep the sickies downstairs and Emma upstairs today; but they all really just want to get in each others' spaces and share germs.

What it Means

I will admit that I didn't dance the proper jig upon getting the news that Emma is cancer free. It seems that a person who doesn't have cancer should not have 2 1/2 years of cancer treatment in her future.

What I know about cancer is pretty limited. What I know about childhood leukemia as really not very much. I'm learning, though, and will continue to learn. Today we found out what's next in a little more detail.

Emma is in a normal risk category. Her symptoms at diagnosis were common. Her reactions have been similar to textbook. She has so far presented a typical case.

They expect to effectively eliminate the cancer in the first 28 days. They did that. There have been enough kids with ALL over the past 60 years to do a lot of research and define the drugs and protocols that work best. They are still tweaking and fine-tuning; but they have a pretty good idea that "no cancer" isn't the final word. They must destroy every single last cancer cell, or it will come back with gusto.

The next phase is consolidation. 28 days of oral chemotherapy as well as weekly clinic visits for intrathecal chemotherapy (chemo given through a lumbar puncture into her spinal fluid.)

After that is 8 weeks of interim maintenance, then 4 weeks of delayed intensification, and then 8 more weeks of interim maintenance. Count that up and you'll get roughly 6 months.

If all goes well, then early summer will find Emma in maintenance, which runs for 2 years... according to the textbooks, anyway.

I have information that truly makes me feel hopeful; but Emma has a long way yet to go. I'm so glad that she is feeling better. Each day is a bit better. She still tires pretty easily. She still limps. She is happier, though, and clearly feels so much better than she has.