Tag Archives: Little Stitch

One Year Out

Playing dress-up

Playing dress-up

Last week we passed the one year anniversary of the end of Emily’s treatment. Without a hiccup, praise the Lord. The past year has been one of amazing growth for Emily. She has completely caught up to the average height and weight for her age group, her cognitive development seems perfectly on track, and she’s still a little spit-fire. Turning into a bigger and bigger one everyday. She seriously cracks us all up on an hourly basis. Right now, as I’m sitting at my desk typing, she’s dressed in her “dance” outfit (a leotard and tutu and socks), singing to herself (as loud as she can, so it’s not actually to herself -the more people who hear her the better, in her opinion) while building a train track in the living room. She just came up and informed me that it is high time she begin dance classes, as she’s been waiting FOREVER. In fact, now that she’s five, FIVE, she should be going to dance classes, American Heritage Girls, and the hospital on a regular basis. Why she threw in the hospital, I don’t know, since her visits there aren’t as much fun as they used to be, but I suppose when you’ve lived your entire remembered life in the hospital, it might be a bit hard to let go. So I’ve got American Heritage Girls covered -she begins in the Fall, and she does still go to the hospital on a monthly basis, so I guess it’s time to begin looking for dance classes. Though, to be honest, I’m not sure a dance class could handle her 😀

So a health update: Emily’s been seeing her oncologist once a month for the past year, getting a physical and having labs drawn. Her CBCs (complete blood count) have been great every month! Platelets, White Blood Cells, and Hemoglobin are all exactly where they should be. She hasn’t shown any signs of pain in her legs or hips, and she’s walking completely normal again (no flat feet from neuropathy). She hasn’t even been sick this year! Since she passed her one year anniversary, we get to start spacing our visits to once every two months – and I’m actually okay with that. At one time I couldn’t imagine going a whole week, much less two months, without knowing her numbers -but she’s doing so great, and it’s really nice to not think about it all the time.

The only thing we’re still watching closely is her immunoglobin levels. Ideally her body would be producing enough of these to keep her immune system healthy, and her number would be in the 500-1500 range. Unfortunately her monthly number usually falls between 350-480. All this means is that she’s still receiving monthly IgG infusions, which she actually loves, because it means she gets to go back to the Infusion Room to see her nurses and watch a movie (Now that she’s out of active treatment, she sees her oncologist and gets labs drawn in the adult lab, so no fun treatment or movies).

Next month we’ll have her heart checked to see if it’s been damaged by the chemo. That’s a bit scary. But honestly, it’s not something we can worry about. She’s in God’s hands, and I’m sure her heart is healthy and strong. But prayers would be appreciated.

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Throwing out the first pitch at a RiverCats game

just posing for the camera

just posing for the camera

Receiving her IgG infusion

Receiving her IgG infusion

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Feeding her newest cousin, Baby Jay

Three years later!

Hello out there! My mom, Grammiex10, keeps reminding me that people still read this and I should post an update, but we have been busy and this blog has fallen by the wayside. If you’ve been waiting for an update, I’m sorry! But, as we all know, no news is good news!

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The three year anniversary of Emily’s diagnosis came and went without fanfare. I knew it was the 8th, but I didn’t feel any emotion really. The day that was the most emotional was actually the day our Classical Conversations group went roller skating for Valentine’s Day, since that was the event we went to right before taking Ems to the emergency room. But this year Emily strapped on her roller skates and skated to her heart’s content! Then she sat on the floor with some friends and proceeded to stuff her face with valentine candy 😀

She’ll be five in just two months! And her growth spurt has continued to take off. She has just about caught up to the average height and weight of kids her age! She’s louder than the average kid her age … which only shows that Stitch is 100% back!!

Each month she sees her oncology team for a physical and lab work. Her blood numbers are still looking great! Hemoglobin, platelets, white blood cells, and her ANC are all in the healthy range. Her IgG is still lower than Dr. Ducore would like during the cold and flu season, so she’s still receiving IVIG once a month, and so far she’s been really healthy. The only bummer is that she gets a headache and neck pain for 2-3 days after, but she’s still a trooper and deals with it without much complaint. She just received her IVIG on Thursday, so today she took it easy, rested most of the day on the couch with a cold cloth, and took a couple naps. She’ll be good as new tomorrow.

Waiting for her IVIG on Thursday

Waiting for her IVIG on Thursday

If you can believe it, we have an appointment for a hair cut in a couple weeks! Her hair is getting longer, but it’s still somewhat uneven and thin, and her bangs are constantly in her eyes, so we’re going to go for it! Hopefully my hairdresser can even it out while still giving Emily the impression she has “Rapunzel hair” 😉 I’ve been showing Emily pictures of cute little bobs, but we’ll see what works when we get there. I will post photos!

French braids after her bath!

French braids after her bath!

Last week we were able to help bring Build-A-Bear to the children’s hospital again!! Jason, along with a co-chair from CMN, and a sponsor from a local Chick–Fil-A, raised enough funds for all 71 admitted patients to build their own bears. Because Jason had to work, I got to go this year and help the Build-A-Bear staff and the Child Life staff deliver stuffed animals and hearts to the children. Each child went through the heart ceremony to bring their heart to life, then the med surge students sewed the animals up! It was awesome! By far my favorite event for the hospital.

Next week, on Tuesday, March 3, IHOP is hosting its annual National Pancake Day for the children’s hospitals. Go into any local IHOP and order a shortstack of buttermilk pancakes for free! But don’t forget to leave a donation that will go directly to your local children’s hospital! Or you can drive by the hospital on Monday, where they will have a mobile pancake station set up! Get your pancakes and make a donation there. We were so blessed by this event shortly after Emily was diagnosed three years ago, and we’re excited about it this year too! We even had the opportunity to talk with our local IHOP stores to thank them for what they do and share Emily’s story. We have seriously loved being able to meet and thank all the people who support our hospital!

Another annual fundraiser for the hospital is the tattoo-a-thon held by Wild Bill’s tattoo shop every February. Last year I got cold feet, but this year Jason and I took Emily, and I may have supported the cause with a tattoo of my own! Wild Bill has raised over $150,000 for the hospital over the years, plus another $18,000 this year. They even have a room in the PICU named for them.

That’s all for now! I’ll update again soon.

A little update after a long break

The first day of Classical Conversations

Excited for her first day of Classical Conversations

I have so much to write about, so many wonderful things that have happened since I last posted in (ahem) July, that I haven’t known where to start. So I haven’t 😀 But tonight I have the urge to write just a little bit, to let you know how Emily has been doing since she completed her treatment a few months ago. Hopefully, in the next couple of weeks, I’ll have the time to come back and fill you in on all the cool things (like her Make-A-Wish trip for one!).

Playing with her best friend, Kayla

Playing with her best friend, Kayla

It has been five months and three weeks since she took her last dose of chemo, and four months since she had her Port removed … and she is doing GREAT! It was all very strange, at first, to not give her daily chemo – I had to squelch my fears and anxiety at what not having the poison in her body meant, sometimes worrying that the cancer would come back as soon as the last of the chemo cleared from her system. And, truthfully, I do still have to turn those fears over to God daily, because that is a real possibility. But she is still in His hands! And today she is doing wonderfully.

Holding newborn friend, Esme

Holding newborn friend, Esme

Monthly labs have shown that most of her counts are returning to normal. Her platelets and hemoglobin are both in the normal range, and many of her blood chemistry numbers are back in the normal range as well. Her white blood cell count has been running a bit low, but not so low that we have to quarantine her. Related to her WBCs, her ANC (immune system indicator) has also been a bit low, but, again, not terribly so. The only bummer has been that her IgG counts have not gone up yet, as hoped. So she began receiving a monthly dose of IVIG in November, and she’ll continue receiving it through the winter months. Because she no longer has a port, she has to have an IV inserted into her arm, which really stinks, but she is a trooper! I was nervous before her November IVIG infusion, after what happened in July, but everything went smoothly!

Trying on hats during Black Friday shopping

Trying on hats during Black Friday shopping

There really isn’t much else to tell about her health, which, in itself, is good news! She has had quite a growth spurt since ending treatment -she won’t be winning the “Tallest Student in Class” award anytime soon, but she is finally growing! Her hair is also s-l-o-w-l-y- growing longer. She still rules the house. I don’t think that’s going to change anytime soon 🙂

Reading with Bapa

Reading with Bapa

 

 

Remembering our vets at the Veteran's Day Parade

Remembering our vets at the Veteran’s Day Parade

Monthly clinic visit as Anna, of course

Monthly clinic visit as Anna, of course

 

 

 

 

 

Last, here’s a video we filmed while waiting for Dr.Ducore at her last check-up.

Back to Camp Okizu

The older four Love Children left for Camp Okizu yesterday. They’ll spend seven days at SIBS (Super Important Brothers & Sisters) Camp, where they’ll enjoy all the usual camp activities, sleeping under the stars, and having a great time with other siblings of cancer kids. The boys went last year, but this is Sophia’s first time going without us (!!!!) – I’ve already called the camp office to check on her. She’s fine. We are so blessed to have this wonderful adventure to participate in!

But we cannot wait until they get back! It’s not quiet here with just Emily … but it is weird not having everyone else.

Ready to go!

Ready to go!

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A Fresh Haircut

Emily’s hair has been on quite the journey over the past few years: thinning, falling out completely, slightly growing back in, falling out again, growing in thick and curly, thinning and falling out again, growing back in again, and now thinning and breaking. She now has very fragile hair, and it’s been growing in funky, so last week I took her to my hairdresser to even things up a bit. Emily loved it and showed off to everyone saying, “I got a short cut!”

Before the cut

Before the cut

sitting so still

sitting so still

blow dry!

blow dry!

All done!

All done!

We’ve (finally) Reached The End of Treatment!!!!

Hip! Hip! Hooray! (cue Lego Movie theme music) “Everything is awesome!!”

Yesterday was Emily’s Last Day of Treatment!! She received her very last dose of chemotherapy last night! We shot a little video of the moment.

We were so excited about it that we forgot to give her something very special -her Purple Heart Bead of Courage. Modeled after the honor in the armed forces, the Beads of Courage Purple Heart is awarded to children who complete their treatment, exhibiting bravery throughout. She’s been holding onto this bead for the past two weeks, anxiously waiting for this moment!

So we’re done! Two and a half years – or 863 days – of chemo. Finished.
Praise God.

2 1/2 years of Beads!

2 1/2 years of Beads!

Life

“The thief comes only to steal and kill and destroy; I came that they may have life and have it abundantly.”
John 10:10

God has blessed Emily with abundant life and boundless energy! He surely knew what He was doing when He knit her together in my womb! The doctors and nurses knew from the very first day that she is a fighter, and she has proved over and over again that cancer can’t keep her down.  She amazes everyone with her spunk and spirit. She truly is a miracle.

Last week she attended a Play Camp while I attended a conference, and at the end her class performed a couple of songs they learned. The video below is about 7 minutes long -if you don’t have the time to watch the whole thing, just know that she never stopped bouncing 😀

This week she is attending VBS (Vacation Bible School) with her siblings at the church I grew up in. Her teacher last night, who was one of my Sunday School teachers years ago, was overwhelmed with her energy and life! Tonight she had the honor of carrying the Bible during the Opening Ceremony, and she was So. Excited! She is truly blessing the people around her who have spent the past 2 1/2 years praying for her.

Emily, the Bible Bearer, with Pastor Berry

Emily, the Bible Bearer, with Pastor Berry

Brother William carried the American flag next to her

Brother William carried the American flag next to her

Holding it high for the pledge!

Holding it high for the pledge!

I am just so thankful for the spirit of joy that God has blessed her with. No matter what her life holds, I know He is with her, caring for her and loving her.

Last Day of IV Chemo!

Emily & Nurse Tina after her last dose of Vincristine!

Emily & Nurse Tina after her last dose of Vincristine!

Today was Emily’s last day receiving IV chemo! After her monthly clinic appointment this morning she was given her Pentamidine infusion (antibiotic), then she got her Vincristine at about 2:00 pm. And we walked out, never to return again!

Haha. Just kidding on that last part. We go back in in two weeks for her IgG transfusion, then we’ll be back monthly for clinic and lab draws. And she may still need to have IgG as well. As excited as we were this morning, the rest of the day was somewhat anticlimactic, knowing we’ll still be around for a long time to come.

She’ll continue taking her daily chemo pills for another 17 days, and she began her last round of steroids today. I tried to talk Dr. Ducore into letting us skip this round, since we’re so close. But he wasn’t going for it. So one more week of Steroid Stitch. And just two more weeks of chemo. Then we. Are. Done.

All done!

All done!

Health after 2 1/2 years of chemo …

I’ve posted a lot of uplifting, fun stuff lately, because that’s what’s been going on around here, but I’ve neglected to share much about Emily’s health! Overall, of course, she is doing great. The protocol of treatment has kept her in remission, and we haven’t had any setbacks in a long while. With the end in sight, things seem to be smoothly sailing along.

Emily’s current course of treatment is the same as it’s been for a year and a half. She receives a monthly IV chemo infusion (Vincristine), a monthly IV antibiotic infusion (Pentamidine), a monthly IV Immunoglobulin (IgG) transfusion; she takes daily chemo pills (Mercaptopurine), once-a-week chemo pills (Methotrexate); and she has one 5-day long pulse of steroids (Prednisone) each month. She was receiving spinal taps with chemo (Methotrexate) each month, then every three months, but she had her last one in April. And of course she has a myriad of support meds prescribed for her to take on an as-needed basis. Meds such as Tylenol for pain, Colace and Miralax for constipation, Famotidine for an upset tummy, and a couple anti-nausea meds. She rarely takes these, as we don’t like to introduce too many extra chemicals into her system -and no, the irony isn’t lost on me, since we give her actual poison each day. But we do try to help her get through side effects as naturally as possible, so I’d rather have her eat a few prunes than give her Colace. But, of course, we give her  whatever she needs if she truly needs it. It really helps that she’s now old enough to effectively communicate how she feels!

Anyway, like I said, overall she really is doing well. She has energy and spunk, and people who don’t know her cannot tell at all what she is going through. Often, people who do know her but haven’t seen her in a while are quite surprised at how healthy she looks! And for that we really are thankful. She is strong, tough, and a fighter, and I think she is handling her treatment really well.

But underneath her glowing cheeks, longer hair, and plump belly, I can see how much of a toll the last 2 1/2 years are taking on her body. Around Christmastime last year she began to develop a rash all over her body. That has since faded, but in its place is dry, peeling skin. Her hands and feet are the hardest hit, though we’ve been able to effectively treat them with salves and oils. But the bottoms of her feet are often peeling, and her fingertips peel so much that she’s taken to nibbling the loose skin off, causing her fingertips to bleed. Sometimes her hands hurt so badly that she holds them out to me and cries and cries. We rub oils on them and I rub them, and I pull them out of her mouth every time I catch her nibbling. Her nurse practitioner says it’s a common side effect of chemo, and we believe it will go away soon after her treatment ends.IMG_20131221_121203_002

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Another side effect we’ve noticed more and more is pain and tiredness in her body. Neuropathy and leg pain have haunted her throughout her treatment, both from the cancer itself and from the treatment, so it’s nothing new. However, there are periods of time when she’s really in more pain than usual, unable to play as long as usual, and simply tired. Often she complains of head and back pain, and most nights I help her get to sleep by rubbing her body, head to toe. I was quite concerned about it at the beginning of May, and expressed my concerns to her nurse practitioner during her monthly clinic visit. But when her labs returned normal, Kay proclaimed it another side effect, saying that Emily’s body is just plain worn out.

A few weeks ago she developed a slight cough that won’t go away, nothing serious. It’s probably, most likely, just a simple allergy-type cough, but it’s one more thing I’m paying attention to.

I’m really looking forward to June 26th, when she takes her last does of chemo! My heart just sings, Praise God! Hallelujah! at the thought! I cannot wait to have my little girl completely back, free of poisons and toxins -and cancer.

After Emily’s treatment ends, she’ll continue to visit her oncologist once a month (though she actually now sees her nurse practitioner each month -see below for the funny reason why!), and she’ll have a monthly lab draw. They’ll be watching her blood levels to make sure everything’s staying as is should (ANC normal, WBC normal, etc. ), and they’ll also check her IgG levels to see if she needs a transfusion. We really have no idea how long she’ll continue to need this support. The normal IgG range is 528-2190, and her labs each month come back at 360-430, so she’s still running pretty low. Hopefully, once she’s off treatment, her immune system will kick back in and begin making IgG on its own again. And she’ll continue taking antibiotics for another six months, but these shouldn’t affect her health.

So that’s what we’re looking at! It saddens me to see Emily in pain, but I’m grateful we’re nearing the end, and it’s not as bad as it could be. God created her perfectly, strong enough to fight this.

On a totally unrelated note, here’s a bit of fun: the dress Emily wore to the MWOY Gala was created by one of my favorite children’s brands, Eden’s Bouquet. My mom sent a photo to the designer, who posted it on her website. 

** When Emily has clinic each month, she sees a variety of doctors and nurses, and her exam isn’t always performed by her oncologist, but rather sometimes by another specialty doctor or the nurse practitioner. Remember when Emily broke her leg last May? And when she developed a sepsis infection last August? Well both events occurred just days after her monthly clinic visit, and coincidentally, both of those times her oncologist, Dr. Ducore, was the one who did her exam. Well, he’s decided that he’s jinxed, so instead of performing her monthly exams, he lets the nurse practitioner, Kay Wells, perform them, and he just pops his head in to say hi and ask if we have any questions. He always pokes his head in the door, and says, “I’m not here, in case you have any questions.” He’s a hoot.

Update – Day 6 – Monday

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– Emily is doing much better today! Her blood pressures and vital signs have been good, she had chicken nuggets and catsup for lunch, then took a good nap and woke up with bubbles in her tummy – or so it seems! She had a great visit with Papa and Grandma/Larry and Rebecca before lunch and got to visit with Chrissie’s friend, Liz, after dinner. She has informed everyone about her wishes for Christmas – a pony, among other things – and told stories and laughed and giggled. It’s awesome to see Stitch again!

– Her blood cultures from yesterday are so far still negative, though they will continue to be watched, as it can take 48-72 hours for bacteria to grow. But the slow growth is good news, as it means the infection is at least lessening. The Infectious Disease doctors said it’s possible that the earlier, positive culture for Serratia was a false one, but she is definitely positive for Pseudomonas. The lab is continuing to test the earliest cultures to find exactly which antibiotic the bacteria is most sensitive -and therefore responsive -to. In the meantime, Emily will continue to receive the two broad-spectrum antibiotics that usually clear gram-negative bacteria.

– Her primary Oncologist, Dr. Ducore, advised that removing her Broviac catheter may be the logical decision at this point. He said that Pseudomonas is very hard to clear completely and that even if her cultures continue to come back negative, there’s a chance that a very small amount of bacteria could “hide” in her catheters and cause another episode of infection months down the road. Since she woke up seemingly fine last Wednesday and was in septic shock within a few hours, no one wants to take that chance. Chrissie and Jason agree with Dr. Ducore. So —- she is scheduled for surgery to remove the catheter – hopefully tomorrow. They are having to fit her into the surgery schedule so that means it could be as early as 8:00 am – or later in the day – or even the next day.

– After the Broviac is removed, Emily’s doctors will wait until all of the current infection is cleared out of her system and her body has healed from the surgery and will then discuss possibly inserting a new catheter. In the meantime, she’ll have some kind of IV line in one of her arms.

– For tonight, we are still in the PICU. She has now been downgraded to be able to go to the regular Peds floor so we are waiting for a room to open up. Seems like we’re always waiting for that! In the meantime, just keep praying. Your prayers are obviously helping her and supporting Chrissie and Jason. Thank you so very very much —-