Tag Archives: igg antibodies

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.

And We’re Home (aka Going Out With a Bang!)

So, the last few days were not exactly what we had planned … but we’re home now and Emily is doing great -back to her normal, spunky self.

I’ll give a brief recap, just in case you’re lost as to what happened – perhaps because you haven’t read all the posts, have read the posts but didn’t understand them, read the posts and got completely confused with all the changing information, were taken by complete surprise because you didn’t even know she was having her port removed (sorry Gaby!), or you’re like me and you wait until you have all the information before you pay attention(!).

Thursday morning Emily and I checked in at the UC Davis Children’s Surgery Center  one last time so she could have her port removed. Now that she’s completed her treatment, and she’ll only need one lab draw a month (and possibly one IVIG transfusion a month), it’s best to take the port out to reduce the risk of an infection.

Waiting for surgery

Waiting for surgery

We passed the time visiting with all our beloved doctors and nurses while Emily colored on her sheets. We haven’t been to the surgery center since April, and we don’t expect to go back, so it was fun to see everyone and say goodbye. 

Heading to the Op Room!

Heading to the Op Room!

Dr. Abramson, the surgeon who initially placed her Broviac 2 1/2 years ago, performed the surgery to remove the port. All went well, and she was back in Recovery in just one hour.

sleeping anesthesia away

sleeping anesthesia away

As I waited for Emily to awaken, I looked around the Isolation Room and took it all in. We’ve spent many, many days here, and while I’m not sad to say goodbye, I did feel a bit nostalgic. I watched the colored lines and listened to the different beeps of her vitals being monitored, and I thought, “This is the last time she’ll be hooked up to a monitor, the last time she’ll rest in one of these beds.”  (Ha!)

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She was a bit groggy when she awoke, but she asked for potato chips, so she must not have felt too bad 😉

Her nurses gave her a special card and gift. She doesn’t look excited here, but she really loved it.

Once she had eaten and had a little drink, we said our final  tearful goodbyes and headed out. She couldn’t quite walk on her own, and my arms were full, so she got to be pushed out in one of the new carts (donated by our amazing friend, Kimberly Kaufman at Angels for Hearts).

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We headed straight to the Cancer Center for her monthly IVIG infusion. Our hope is that this was the last one. Now that she’s off treatment, it’s very likely that her body will begin to produce the missing antibodies on its own again, and she will no longer need this extra immunity boost.

All hooked up

Getting all hooked up

She’d had a peripheral line placed in her hand while she was under anesthesia, and she was very careful not to knock or jostle her hand. She just kind of held it out the whole time.

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Her transfusion took about 1 1/2 hours, and she was quiet and restful the whole time. She seemed to still be groggy from the anesthesia, so she watched a few movies and relaxed.

Just as her transfusion finished, only 5 grams of the antibodies, and the nurse was setting up her flush (saline to push the Ig all the way in and to clear the line), she started slouching down in her chair. Then all of a sudden she began shaking and crying out that she was cold. Thinking it was simply cold in the room, I sat in the chair and cuddled her in my lap. But her shaking became more and more violent -so much so that she folded herself into a fetal position and cried out that her back HURT! She kept saying, “I’m cold! I can’t do this!” And then I realized she was burning with fever. Her nurses responded instantly. They hooked her up to watch her vitals – her heart rate shot into the 170s, her blood pressure plummeted to 80/50, and her temp measured at 39.5, or 103.1 -they called in the oncologist team, and they pushed in a bolus of fluid (a fast running, large amount of saline to bring the blood pressure up).

At first everyone thought it might be an allergic reaction, but then one of her docs said, “We’ve seen this before,” and they started sepsis protocol (a typical IVIG reaction might not occur for three days). When the bolus didn’t help, they called 911. Within maybe five minutes of the initial symptoms, the paramedics were at our chair. The nurses all worked together to put in a new peripheral line so they could draw blood to culture -to grow and see if she had an infection. Then we were wheeled onto the ambulance and driven (all the way) across the street to the ER.

Once there she was given antibiotics, Tylenol to bring the fever down, and two more boluses were pushed within one hour. Thankfully this all had the effect they were hoping for. Her blood pressure came back into the normal range and her fever subsided -for the most part; we had to help the fever a bit with cold cloths, but it eventually came back down. She also had a chest xray and nasal swab. They wanted to check for any possible infection.

She was really tired and fell asleep quickly. There is no cell reception in the ER, so I sent out an SOS email, and everyone scrambled to make arrangements. Jason had to stay home with Sophia, who had a little bug (not related to Emily), so my mom and Aunt Gaby came to sit with me. She was definitely being admitted, but they hadn’t decided yet if she should go to the general Peds floor or if she needed to go to ICU. Her heart rate was still really high, and they needed it to come down.

Around 11:00 pm, she had another episode of fever and chills with elevated heart rate, but this time Tylenol fixed everything quickly, and it was decided she didn’t need the extra care from ICU and could go to the general Peds floor.

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Heading upstairs

As we waited in the ER, and then as we got settled into our room on Davis 7, some of our nurses stopped by to say hi. Of course no one wanted to see us in that condition, but it was still good to see them again.

Throughout the night Emily’s heart rate continued to drop back into the normal range again, and she didn’t have any more fevers or chills. By Friday morning she was already feeling better -tired and puny, but better. Her surgeons stopped in to check on her, then the Hem/Onc team came by to share their thoughts.

That’s when we first heard about the spot on her lungs and the possibility that it might be a fungal infection. But after 24 hours (Friday evening) of negative blood cultures, and no more symptoms, the thoughts switched back to an allergic reaction.

There really is no way to definitely know what the spot on her lungs is without invasive procedures, and those bring their own set of risks, including a greater risk of cancer development. So because the cultures remained negative (by Saturday night they were negative for 48 hours), she remained afebrile for at least 24 hours, all her vital signs returned to normal, and because the symptoms started right after receiving IVIG, which is allergenic, and she had had no signs of a fungal infection prior to Thursday (like a cough), her doctors were comfortable sending her home today. When we see Dr. Ducore in a couple weeks, we’ll discuss the possibility of doing another chest xray in a few months to check on that spot.

Emily was thrilled to head home. She wore jewelry, pajamas, and gladiator sandals -on the wrong feet -and carried her baby in matching pj’s, and walked out on her own two feet.

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Thank you all for your prayers, compassionate words, and meals! Maybe now we really are done with all of this …

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.

Celebrations!

We’ve been super busy this season (I’ve said that before!), and I haven’t posted some important events.

First Time Swimming!

Back in March, we headed down to Southern California to spend a weekend with Jason’s best friend and his wife. It was already Summer there, so we spent plenty of time in the pool. Even Emily. For the first time in nearly three years. You can imagine how excited she was! But even more excited, were her brothers and sister, who have been waiting for this moment since her Broviac was placed 2 1/2 years ago.  Pictures will share more than words can.

First we picked out the perfect swimsuit.

First we picked out the perfect swimsuit.

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She had plenty of well-wishers!

She had plenty of well-wishers!

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swimming!

swimming!

End of Treatment!!

Second, Emily only has 37 days of treatment left! She’ll take her last dose of chemo on Thursday, June 26th! I’m typing with tears in my eyes and a lump in my throat as I think about how close that is. February 8, 2012 seems so very long ago, and we are all overjoyed to be this close to the end! We are planning a huge celebration mid-July (we’re aiming for Saturday afternoon, July 19th), and everyone is invited! It will be open-house style with appetizers, fun for the kids, and hopefully full of everyone who has supported us and traveled this journey with us. I’m working on having the Blood Center mobile bus on site so we can host a blood drive (remember how many transfusions Emily had the first year?) and a booth set up to register bone marrow donors. The only missing detail at this point is a location … that’s been more difficult to secure than I anticipated. But we’ll keep you updated and send out an invite once it’s set!

Last Lumbar Puncture!

Third, seeing as how we’re so close to the end, Emily has already celebrated one huge milestone -her last spinal tap with chemo! Tuesday, April 15th was the last time Emily had to undergo a spinal tap and receive chemotherapy into her spinal fluid. She and I were thrilled to celebrate her last LP (lumbar puncture) and brought gifts to the Children’s Surgery Center nurses who have treated and cared for her for the past 2 1/2 years. I had a difficult time deciding what to bring them. How do you ever say thank you to the people who have helped save your child’s life?  We finally decided on buckets of candies with a “Nurses Survival Kit” tag, a photo of Emily with a thank you note, and a poster we printed that says, “You’ve never really lived until you’ve done something for someone who can never repay you.” These pictures are from that day. I’m a terrible photographer, please forgive the out-of-focus/blurry shots!

Our two cheerful receptionists, who got their own bucket to keep up front :)

Our two cheerful receptionists, who got their own bucket to keep up front 🙂

In Isolation, getting ready

In Isolation, getting ready (we’re typically in that room off to the right of the photo, because of Emily’s MRSA, but today that room was already taken, so she was blocked off in one of the partitions.) Anyone who comes in has to gown up, including me.

Accessing her port

Accessing her port

Dannika, one of our favorite nurses

Dannika, one of our favorite nurses

another favorite (who am I kidding, they're all favorites!)

another favorite (who am I kidding, they’re all favorites!)

Passing the time with finger painting with Child Life Specialist, Ginger

Passing the time finger painting with Child Life Specialist, Ginger

In the OR, ready for the procedure.

In the OR, ready for the procedure.

And she's done! De-accessing her port so we can go home (or, rather, to the Infusion Room for more chemo).

And she’s done! De-accessing her port so we can go home!

Emily handles these like a champ, walking out on her own.

Emily handles these like a champ, walking out on her own.

The Nurses Survival Kit tag we put in the candy buckets

The Nurses Survival Kit tag we put in the candy buckets

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 4th Birthday!

Last, another celebration was Emily’s 4th Birthday! We already shared how she spent her morning at the State Assembly, but after that, we headed to the Cancer Center for an IVIG transfusion. We love her nurses. Absolutely, positively, more-than-words-could-ever-express love them. They treat Emily as if she were their own and make this journey so much easier and more delightful for us all (the photo halfway down is of her sitting in front of a “vanity” her nurses set up for her when she had to go to the Infusion Room unexpectedly). So, of course, they went above and beyond to make her birthday special when she went in that day.

bubbles while they wait

Nurses Dena, Becca, Fancy Nancy, Doreen, and Mary

Nurses Dena, Becca, (Fancy) Nancy, Doreen, and Mary

They decked out her chair! You can’t see everything in this photo, but they gave her a princess pillow case, princess tea set, stuffed animals, princess stickers, a goody bag of snacks for the day, and even had the DVD player set up with Frozen already queued. They also taped up a special sign above her chair. IMG_20140501_143644864

 

She squealed with delight when she saw everything. Maybe at eight or ten years old, spending her birthday in the Infusion Room wouldn’t have been so cool, but at four, being pampered by some of her favorite people was perfect.

Last, another of our favorites 🙂 Nurse Tina. She wasn’t there for Emily’s birthday, so we had to snag these photos last week.

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We DO like the Port after all!

Well, just like everyone told me, Emily is getting used to the port accesses, and we are liking it much better! She’s had her port accessed (that means a needle was inserted) a few times since my last post a few weeks ago, and each time seems to go a little easier than the last. It’s not roses and rainbows like the Broviac was, but it is better. The Child Life Specialist at UCD is phenomenal and such a help in keeping Emily somewhat cheerfully distracted while being accessed. And the nurses are so patient. Emily has said over and over that it doesn’t hurt a lot, though it does hurt a little, but it’s mostly scary. So we’re working on making it less scary. One thing we changed is the process of applying her EMLA cream (the numbing cream we put on her skin about an hour before she’s poked). I had been applying the cream and putting a piece of Tagederm (clear medical tape) over it to keep it in place. But she HATES that stuff. Another Cancer Kid Mom gave me the suggestion of using Press ‘n Seal instead. I didn’t think it would work, because I didn’t think it would stick to her skin, but it does! It’s like magic! The stuff sticks just enough to keep the cream in place, but it also peels off super easily and doesn’t hurt Emily’s sensitive skin one bit. Yay!! Yay for the encouragement of other moms going through the same thing. So with the accesses getting easier to bear, and the freedom of being tube-free, I am finally feeling good about our decision to switch from Broviac to Port.

Overall Emily has been doing great. She is healthy and growing well. We had been concerned about her walking -if you remember, she had stopped walking for about four months when first sick, then the Vincristine caused joint pain and neuropothy which caused her to walk funny, then she broke her leg … -but she seems to be walking quite normal now. Her feet still sort of slap the floor a bit awkwardly sometimes, but I think it’s working itself on its own, which means she won’t need physical therapy. She still receives IVIG transfusions each month, and I think that’s the reason she hasn’t been sick this year (besides the recent septic shock episode, but that would have happened regardless of how healthy her immune system was). Actually, all five of our children have been blessedly healthy this year, and we’re praying for more of the same this winter season! One odd thing about this Maintenance stage is that Emily’s hair started to grow in very thick and curly earlier this year. But sometime this summer parts of her head seemed to lose hair. She doesn’t have bald patches, but rather very thin and fuzzy patches. She has long strands of curls on the sides of her head and almost no hair in the back. Which actually works out very well, because she can’t see the back and has no idea! The other day she was preening in front of the mirror, pulling on her freshly washed hair, excitedly remarking that it is now as long as Sophia’s hair. Not quite, but in her mind it’s perfect.

Long enough for pigtails!

Long enough for pigtails!

We’re putting in a Port

After extensive research, prayer, and talking with doctors/nurses and other families, we’ve decided to go with the Portecath central line instead of a Broviac. Everyone seems to agree that this is a wonderful option for Emily, and she is very excited. Presented with the two choices, she decided that she wants to be able to take baths and go swimming, and she is “going to be very brave,” when she has to get poked each time she’s accessed.She proved this last Friday when we went to the Infusion Room for her IgG transfusion. She had to have an IV put in her hand, and she did so great!! Just a little bit of crying with the needle poke, then she was fine. She didn’t even move her hand. Her nurses were so impressed, and when she was done they presented her with a reward they had purchased the night before -a sparkly, glittery My Little Pony. Emily thought the poke was definitely worth it 😉

Her surgery is scheduled for Thursday morning, and she’ll have her Port accessed for the first time when she receives her monthly spinal tap and chemos next Tuesday. Please keep her in your prayers during the next week, as she will have to be very, very brave.

Today we got to meet with her oncologist, Dr. Ducore, and I had the chance to ask him my burning question: Since the discovery of her Minimum Residual Disease (MRD) in March 2012 (which is one of the reasons she is being treated High Risk), have there been any further studies, trials, or outcomes showing that following the High Risk protocol has increased her chances of not relapsing, as hoped? He shared that unfortunately, because the importance of MRD has only just recently been discovered -within the last couple of years – the studies and trials testing how well kids with it respond to a High Risk treatment will still take another 5-10 years. Emily is ineligible for the trials, but she is one of the first patients, who presented with MRD, being treated with the more intensive High Risk protocol. So we won’t have any answers during her treatment. The good news, however, is that High Risk kids have a tendency to relapse earlier in their treatment, usually within two years of being diagnosed. If they don’t relapse in that time frame, they then fall into the Low-Standard Risk groups and have just as good of a chance of not relapsing as everyone else. Emily is 18 months into her treatment and doing well!! And, ultimately, as Auntie Plum wrote when we first learned of the MRD, we are trusting God for a 100% chance of not relapsing 🙂

Photos & Videos Galore

I have a backlog of pictures and short video clips I’ve been wanting to share from the last month, so I’m going to squeeze them all into this post. I’m sorry in advance if it takes a while to load on your computer.

Emily has been doing really well. Her daily chemo has been bumped back up to 100% dosage after dropping it to 50% in May, and her counts seem to be holding at a good level. The monthly IGG transfusions she gets are nothing short of miraculous. Her siblings have all been sick over the past few months with a stomach bug and this yucky high fever + aches + cough virus, but Emily hasn’t caught anything! What a difference from before the transfusions when she got sick simply by breathing.

Emily’s walking is unbalanced and ungainly, and while she doesn’t let that stop her most of the time, quite often her legs get tired and she wants to be carried. It’s been seven weeks since her cast was removed, and the pain and gimpiness could be that her leg is still healing, but realistically I think it’s just something we’ll deal with until she’s done receiving Vincristine next Summer.

The week of Pentamadine, Vincristine, Methotrexate, spinal tap, & steroids each month are still a bit rough, but I think we’ve all grown accustomed to the routine. And each Wednesday, after Emily receives her bolus of oral Methotrexate on Tuesday night, she wakes up pukey and ill. But it passes quickly. It’s almost hard to remember what life was like at this time last year! Cancer is always in the back of my mind, but most days I don’t consciously think about it.

Onto the pictures!

Off to SIBS Camp!

Off to SIBS Camp!

Welcoming the boys home from SIBS Camp, which they LOVED!

Welcoming the boys home from SIBS Camp, which they LOVED!

Welcome home boys (with some friends)

Welcome home boys (with some friends)

So Emily came up with her own way of swinging. Every time we walk out the front door she has to take a swing or two.

Jason brought his work home a couple weeks ago, and the girls were absolutely delighted to have him as an audience!

What do you mean you can't concentrate?

What do you mean you can’t concentrate?

Sophia eventually left him alone. Emily was a bit more stubborn.

Sophia eventually left him alone. Emily was a bit more stubborn.

Speaking of stubborn …

She doesn't care who sees her throwing a fit.

She doesn’t care who sees her throwing a fit.

The boys were invited to a soccer game at Raley Field courtesy of the UC Davis Hospital and the Children’s Miracle Network. After watching the professional Sacramento team play the San Jose Earthquakes, the boys got to usher two Professional International teams onto the field. They’re the three on the far right.

Norway vs. Mexico at Raley Field

Norway vs. Mexico at Raley Field

Last week my parents surprised the kids and I with a trip to Pier 39 in San Francisco, complete with a train ride. We all had so much fun!

Waiting for the train

Waiting for the train


On the wharf

On the wharf


Emily wasn't hesitant to touch the sea creatures at all!

Emily wasn’t hesitant to touch the sea creatures at all!


When she didn't get what she wanted, she threw a silent protest. Even the people walking by had to laugh.

When she didn’t get what she wanted, she threw a silent protest. Even the people walking by had to laugh.

Last, I wanted to share with you our view when we’re in the Pediatric Infusion Center in the UC Davis Cancer Center. It’s really quite peaceful.

View from our chair in the Infusion Room

View from our chair in the Infusion Room

When the new Infusion Center was built last Fall, donors contributed by buying Infusion Chairs for the patients. In return, they could have their name on the wall. The Children’s Miracle Network donated a chair in Emily’s name, so now her name is on the wall.

The Love Chair

The Love Chair

Current Treatment (AKA Long-Term Maintenance)

Well, we haven’t written any new posts in a while because there really hasn’t been a lot to say! Which is good! Since her last hospital stay at the end of February, Emily has been healthy and doing well. We saw her oncologist two weeks ago, and he was very pleased with her overall health. She has FINALLY gained 1 pound, which puts her at 23.6 lbs, just shy of the 24 lbs she was when diagnosed 13 months ago. She has also grown 1.5 inches taller over the past year, so while she is still quite tiny, she is growing, praise God!

Emily and her best friend, Kayla, who is ten weeks older.

Emily and her best friend, Kayla

Many people ask whether or not Emily is still in treatment and what her future looks like. She is in the Long-Term Maintenance term of her treatment, which will last until July 2014. This is what that looks like:
* every day she takes a chemo pill (6MP) at home
* once a week she takes a bolus of a second kind of chemo (Methotrexate), 4 pills at a time at home
* once a month she takes a round of steroids (Prednisone), twice a day for five days at home
* once a month she gets a third chemo (Vincristine) through her central line at the Cancer Center
* once a month she gets an antibiotic infusion (Pentamidine) through her central line at the Cancer Center
* Her maintenance treatment is counted in three-month cycles. During the first two months of every three-month cycle, so 8 times in a year, she gets a fourth chemo (Methotrexate) into her spinal fluid via a spinal tap.
* The Home Health Nurse also comes out once a month to draw labs, and if Emily’s IgG counts are low, she goes to the Cancer Center for an IVIG transfusion.

All in all, the current treatment has been very relaxing! Gone are the daily trips to the Cancer Center, gone are the twice-a-week visits by the Home Health Nurse, and gone is the constant worry about infection. We’re still very careful, of course, especially since we now know Emily’s antibodies don’t work at all even though her ANC is high, but we don’t feel as consumed by her treatment as we have.

Emily has been handling her treatment really well. The one week of the month when she receives her spinal tap, Vincristine, antibiotic, and steroid are her worst. She is tired, weak, grumpy, sometimes has full-blown roid rages, struggles with constipation, doesn’t sleep well, and doesn’t eat much (the steroids make her hungry, but the nausea and general malaise kill her appetite). We are learning to prepare for this week by stocking tempting foods, prophylactically giving Colace (a stool softener) and nausea meds, and trying not to plan too much out of the house. It’s a good week to sit at home and read 🙂

I, personally, have struggled with my emotions and thoughts recently regarding Emily’s future -I may write about it soon -but there are many days when our family feels almost normal. The boys are all playing baseball again this year

baseball

The girls play together, brushing each other’s hair

brushing hair

and we’re able to focus on things other than cancer. It’s good.

Prayer Requests:
We have met many precious friends who are also undergoing medical treatments, and a couple of them need prayers. Amanda, 16 years old, beautiful, kind, loving, and brave, who I can’t write about without crying, is fighting recurrent progressive rhabdomyosarcoma. Her cancer came back and spread. Please, please pray for a miracle.
Olivia, who is the same age as Emily, is in kidney failure. She has a rare, genetic kidney disease that is currently in remission but is not curable. She will deal with it her whole life, and she needs prayers to have a whole life. Her twin sister also has the disease, but praise God she has not had the fight Olivia has had.
And please praise God with us for Emily’s health! We feel very lucky that she is responding to treatment. Also thank God with us for her team of doctors. They are simply amazing, and I am so grateful God chose them to care for Emily.