Party Time

We are all pretty excited to celebrate the end of chemo.

We will still be checking her counts. She has an EKG scheduled for February. All in all, though, we are delighted to be done and we are throwing a party.

I know a lot of Emma's team won't be able to make it, but this is our big thank you to all you who have supported us in every way. So even if you can't come, know that we love you, and dance in spirit with us.

Santa Claus, Silver Linings, and People are Good

People are good.

The news is full of horrible stories that break your heart; but there is hope: people are good.

Much of kindness and generosity happens without getting a highlight on this blog, and I am sorry for the omissions. We are surrounded by support and love. For example, Millie's Princess Foundation has been very busy of late. They received some invitations for cancer families and brought us along.

The day after Thanksgiving, Gallivan Plaza hosted a skating party to celebrate their tree lighting, and we were invited to participate. The kids all loved it. They all did better this year than last - Tommy was adventurous it rather than refusing to put his skates on the ice. Caleb did well. The girls were both fairly independent.

We met up with the Lynch family there. They have become such incredible friends as Grady and Emma both have fought leukemia. In the midst of such a fight, the Lynch family are always on the lookout to help someone else. They are truly some of our favorite people.

A few days after Thanksgiving, our family was invited to see Santa Claus before City Creek Mall opened.

Again, we loved spending time with marvelous friends. We love these families that share this tough experience.

Finally, for this post anyway, Santa Claus reached out and asked for our Christmas wish list. I told him we would be ok, and to go focus on somebody in need. He said he had heard the same thing from several families, and would I just please give him a list. After a little back and forth, Santa won and I gave him my list.

Yesterday, while we were at the hospital getting Emma's port removed and ringing the bell, Burt Brothers was replacing the muffler on our van. When I went in to get the car, Jake at Burt Brothers thanked me for letting him take care of us. "Merry Christmas," he said.

You will never convince me that there is no Santa Claus. After all that has been done for us in the name of Saint Nicholas, I am committed to keeping him alive and active for many more years to come.

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.

You Can Fly

Once again our family supported us and helped us create a tree for the Festival of Trees. Emma's Aunts Sarah and Jenni joined with Mama as the design team.

We included Emma's "No More Chemo" photo and the dedication for the tree said this:

Toward the end of her cancer treatment, Emma felt like she was a veteran of pokes and procedures. She likes to help new cancer patients – especially calming them about getting their ports accessed. Emma’s advice:

“The way to be brave whenever you are scared is to Think of a Happy Thought.”

On Thanksgiving, Emma finished treatment for Leukemia after 2 years, 2 months, and 3 days.

It is wonderful to be able to sink emotions: fear, sadness, hope, gratitude, and love  - into a creative project.

I hope my family enjoyed doing it. My father built the pirate chest, one sister quilted, another sister created the signs, my brother made Peter's hat. Many gathered and created the materials.

The sold on the bottom of the sign feels so good. The purchase price goes straight to Primary Children's Hospital. I'll always, always be grateful for that amazing house of healing.

Next year we will do a tree again, though we must find a new dedication. Emma is done.

No More Chemo

Thanksgiving day was Emma's last dose of Mercaptopurine - 6 (6MP) and her last dose of Methyltrexate. These are oral meds she has taken since beginning maintenance.

From wikipedia:

Some of the adverse reactions of taking mercaptopurine will include diarrhea, nausea, vomiting, loss of appetite, fatigue, stomach/abdominal pain, weakness, skin rash, darkening of the skin, and hair loss. Serious adverse reactions include mouth sores, fever, sore throat, easy bruising or bleeding, pinpoint red spots on the skin, yellowing of eyes or skin, dark urine, and painful or difficult urination. Other more serious side effects include black or tarry stools (melena), bloody stools, and bloody urine… Mercaptopurine causes myelosuppression, suppressing the production of white blood cells and red blood cells. It may be toxic to bone marrow. Weekly blood counts are recommended for patients on mercaptopurine.

And some of the highlights of Methotrexate, which Emma took weekly by mouth, except on weeks that she had it intrathecally, also from Wikipedia:

It is used in treatment of cancer, autoimmune diseases, ectopic pregnancy, and for the induction of medical abortions. It acts by inhibiting the metabolism of folic acid… Although methotrexate for autoimmune diseases is taken in lower doses than it is for cancer, side effects such as hair loss, nausea, headaches, and skin pigmentation are still common. Methotrexate can be taken orally or administered by injection (intramuscular, intravenous, subcutaneous, or intrathecal). Oral doses are usually taken weekly, not daily, to limit toxicity. Routine monitoring of the complete blood count, liver function tests, and creatinine are recommended.

We are really grateful for the benefits of these drugs, and couldn't thing of anything better than to be finished taking them for Thanksgiving.

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. 

How to Be Brave

Emma has some experience with hospitals.

Emma has some experience with surgery and operating rooms.

Emma has been poked with a fair number of needles.

A few months ago, her nurses asked if she would mind allowing another patient to come an watch Emma's port access. Emma was happy to let a less-experienced patient come and learn. They picked Emma because she doesn't cry, and she handles port access pretty well. She explained how to be brave to this other patient - all matter-of fact.

I asked her again a few days later to tell me how to be brave.

"When you are scared, you just have to think of happy things."

I couldn't help thinking of a Disney song - here are some of the lyrics from Peter Pan:

Think of the happiest things.
It's the same as having wings

Think of a wonderful thought
Any merry little thought
Think of Christmas, think of snow
Think of sleigh bells - off you go!
Like a reindeer in the sky
You can fly! You can fly! You can fly!

When there's a smile in your heart
There's no better time to start
Think of all the joy you'll find
When you leave the world behind
And bid your cares good-bye
You can fly! You can fly! You can fly!

Sometimes it is hard for her to be brave. Sometimes it is hard to think of happy things. But this sweet girl keeps on trying and teaches me every day.