Tag Archives: blood counts

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

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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.

Rounding Third

Daddy & Lil’ Stitch

Emily is back in the hospital for her third round of high-dose Methatrexate. After her platelets and ANC were low on Monday, her normal Tuesday admittance was delayed to today.

With several family members out of town this week, most of the Love family packed a bag for this round of Chemo: Momma & Emily prepared for the hospital as the older Loves got ready for a trip down south to spend a fun weekend with Aunt Jennifer, Uncle Chris, and four of their cousins.

We’re all praying for yet another record clearance of the toxic drug from Emily’s body. She’s impressed everyone so far with how she’s handled this round, which had us all so worried at the outset. Even through the discomfort of side-effects, Emily is eating well, playing hard, and looking better than ever!

The Loves at the California State Fair

We are also beginning to see evidence that Emily’s own bone marrow is creating the healthy blood she needs. Instead of the regular trips to the infusion room for blood and platelet transfusions, Emily’s counts are finally rising all on their own!

Please pray that, once again, the “rescue” drug clears the Methatrexate quickly from Emily’s body this weekend. Pray for Christina and Emily as they endure another four days confined to a hospital room. Pray for Jason as he works and the kids as they enjoy time with their cousins. And praise the Lord for evidence of healing and the support of family and friends who continue to wrap their arms around the Love family! 

When you’re tired, even the floor-mat looks comfortable!

Back in treatment

When Emily was originally diagnosed in early February, she had been showing signs of pain and discomfort for several weeks. So when her treatment began, it was hard for family to distinguish what discomfort was from the chemotherapy and what was simply an aspect of her Leukemia.

Now that the Leukemia has begun to recede, the two-week break allowed us to see a return of the energetic personality that earned Emily the nickname ‘Stitch’. When her treatment cycle began anew though, this improvement in Emily’s demeanor made it easier to see just how tough this medicine is on her little body. Within 24 hours of her return to treatment, Emily was clearly not feeling well, with nausea setting in and signs that she was struggling with pain and discomfort throughout her body. Her diarrhea also returned, though it is raising fewer concerns now that we know it is just one of many side-effects that will eventually pass.

Eating lunch with Auntie Jennifer

Of greater concern this past week has been an increasing need for blood and platelet transfusions as Emily’s blood counts are dropping quickly and her body is not maintianing adequate levels on its own. While transfusions will always be available to help Emily’s body keep up, there is an inherent risk in each transfusion given so the doctors prefer to keep them to a minimum. This past week alone, she received platelets twice and whole blood once and she will receive more of each on Monday.

Thus far, lab tests have not been conclusive as to why Emily’s counts are staying so low but we hope to hear more tomorrow. It could be a result of overworked liver and kidneys or it may just be another side-effect we have to hope improves in time.

Emily has two more weeks in this cycle of her Consolidation phase. She receives chemotherapy just once each week. The next phase of treatment is currently scheduled to begin on June 19th with the first of many 4-day hospital stays. However, with her low ANC and platelet counts there may be another break between cycles in order to allow Emily’s body a chance to recover before the next round begins.

Emily has always been a happy girl and continues to have plenty of smiles. Her strength also continues to improve and she is walking on her own more and more everyday. It is hard to watch Emily struggle with the physical impact of the chemotherapy but when she flashes you one of her big grins or throws her head back in laughter, she makes this journey a little easier for us all.

The Howell and Love children enjoyed a day of fun!

Please pray specifically this week for Emily’s blood and platelet levels. Pray that her body be able to make these important cells on its own and to maintain the levels she needs to stay healthy and strong. 

Please also pray for Emily’s family as they continue to watch over Emily and adjust their lives to the demands of an intensive treatment schedule. Pray for physical rest as well as emotional peace. Every day brings new worries and concerns that weigh heavy on Christina and Jason’s hearts. Pray that God would give them peace and courage in the days ahead. 

 

A Week’s Vacation

Storytime with Auntie Jen

After Emily’s long stay in the hospital, her doctor decided a week’s vacation was in order! Well, it was also due to her extremely low ANC count, but it is well-earned nonetheless!

Emily kicked off her week without treatment with a visit from the Howell Family and she had a fun-filled Friday with aunts, cousins, and friends. Her spirits are always higher at home with family and her mobility has also been improving, as pictures of her off-roading will attest!

Stitch looks like a girl ready for a fun time!

Despite the improvements in Emily’s physical strength, her eating habits have been worsening. The concerns over her food and fluid intake persisted over the weekend and the specter of a nasal feeding tube loomed. However, Monday brought a call from Emily’s home-health nurse with news from her lead doctor.

Doctor Ducore was on vacation last week while Emily was in the hospital and not available for consult on the feeding tube issue. But on his return, he assured the nurse that the family had made the right decision in refusing the tube. There’s nothing to worry about, he said! As long as Emily continues to be active and her lab results show no signs of malnutrition, Doctor Ducore believes Emily is getting what her body needs.

Emily, Momma, and Auntie Jen

On the medical front, Emily’s labs show that her white blood cell count has risen (from 0.4 to 1.0). A positive sign that her body is beginning to produce healthy cells on its own! Her ANC also jumped over the weekend from a low of 60 to 720! Emily’s protein and albumin levels remain low, however the puffiness in her face (partially caused by low protein levels) has finally begun showing signs of diminishing. While still not entirely gone, we can finally see a bit of the Emily we knew before the Leukemia took hold.

Emily continues to struggle with pain and nausea, causing her sleep to be fitful and likely a major contributor to her lack of appetite. Please keep Emily’s physical body in your prayers. Pray that this week “off” will be rejuvenating in body and spirit so she can enter next week’s four-day treatment schedule at the top of her game. 

Dance Time with Christina and the cousins!

Emily is Home!

Ready to go home!

After a solid night’s sleep, Emily was talkative and playful Wednesday morning. She woke asking for “her boys” (aka her brothers) and spent the morning crawling about the room in angel wings with Mommie and Auntie Elisabeth.

Just before lunch, Kathie, the music therapist arrived armed with a variety of musical instruments and the quartet joined in song. Midway through “This Little Light of Mine”, Dr. Taylor arrived and was so impressed by Emily’s bright smile and joyful song that he declared she should get to go home and sing with her family!

While Emily’s ANC remains well below the normal discharge level (60 when it should be 500), her other important blood count levels have risen and she has remained fever-free. She also began eating food with greater gusto after nausea and pain medication helped her feel a little better. All in all, Emily’s spirits and body tend to do much better when she is with her family and surrounded by the comforts of home and we are so excited that she was able to return home yesterday afternoon.

Naptime with Auntie

Thank you to everyone for your prayers and support this past week! It is hard on the entire Love family when Emily has to be in the hospital and they are blessed to be surrounded by so many wonderful family and friends who help ease the burden.

Enjoy some more birthday pictures and a video from Emily’s last two days in the hospital!

Taking balloon-dog for a walk!

How many instruments can one Stitch play?

Emily loves visits from her siblings

Emily’s siblings made her cards & cake pops!

Fevers, Antibiotics, and Nutrition, oh my

It was a late night getting admitted to Pediatrics after Christina and Auntie Elisabeth took Emily to the emergency room. There was an Auntie swap, and Aunt Gaby took over, spending the night with momma and Emily in the new double hospital room on the 7th floor.

We got clarification that, despite sharing her room with another patient, Emily is still actually in isolation. Due to her previous MRSA-positive test, Emily will always be considered a possible carrier. However, MRSA is only spread through touch so, while she doesn’t have to stay in a negative pressure room, she is not going to be allowed to leave her room. No play room, no hall-walking. When Emily was immobile this would have been challenge enough, but now that she’s finally regaining some physical strength and enthusiasm, this is going to be an even greater difficulty for our playful Stitch.

Despite the fact that Emily’s temperature had gone down by the time she was checked in at the E.R., Emily was put on on a general antibiotic last night. A second antibiotic, Vancomyacin, was begun this morning just in case the fever was caused by MRSA. Tomorrow, an ethanol lock will be started on her Broviac lumen to flush any possible bacteria out and ensure the lumen is infection free. We don’t mess around when Emily has no immune system of her own!

If Emily’s temperature remains normal and her cultures come back negative, she could be released after 48 hours (tomorrow night). However, in the meantime some of Emily’s other physical conditions have come to the doctors’ attention and raised concerns.

Emily has been eating and drinking less but has had persistent diarrhea. With her low protein levels, sustained facial puffiness, and some vomiting today, the dietician has been consulted and there is discussion of keeping Emily hospitalized while they boost her nutrition intravenously or look at other dietary options. She was given morphine for pain (possibly as a result of her chemotherapy on Tuesday) and Zofran for nausea, in the meantime. Hopefully these will help Emily feel well enough to eat on her own.

Emily received two blood transfusions this morning as scheduled. Getting healthy blood always perks Emily up and visitors today got to see a playful, happy girl. However, it also means that Emily needs more distraction than her restrictive environment allows. If you’re thinking about visiting Emily and Christina this weekend, give Chrissie a call first just to make sure they are still actually there!

Please pray specifically for Emily’s physical body today. The chemotherapy has done a number on all of her systems and the nutritional concerns are really just a small part of that problem. Please pray that her body stays strong, that she’s able to get the nutrition that she desperately needs, and that she be able to get it at home rather than staying in the hospital!

*** The previous post was updated to reflect that Emily’s temperature going into the hospital was 100.5 (not 105). Apparently, 105 would have been a pretty big emergency. This is one of those reasons that having the Auntie without children write the blog might be a bad idea!

More Cheese, Please!

A meeting with Emily’s team of doctors today revealed that her protein levels are abnormally low. Normally supposed to be between 5.5 to 7.5, Emily’s are at 3.5.

Protein, and another blood plasma constitutient, albumin, are what help Emily’s circulatory system retain water (a process called oncotic pressure). Without these, we get the puffiness we’ve all noticed in Emily’s face and extremities that we previously thought was a result of the steroid.

Overall, the doctors seem unconcerned; telling us repeatedly that there’s not a whole lot to do, we’ll wait it out, we just need to watch and see, and eventually the protein levels should right themselves. Nonetheless, anything abnormal makes us uncomfortable.

It’s a given, with all the toxins being pumped into Emily’s body, that some things will be out of whack. And it is likely that the low protein is a result of some of her chemotherapy drugs affecting her liver. However, there are other possibilities, such as a gastroenterology problem that would be a separate issue in and of itself and would require a referral to another hospital, as U.C. Davis does not currently have a gastroenterologist on staff. A urine test is being done to help determine the nature of the protein deficiency and we basically have to do as the doctors say: wait and see.

In the meantime, we did get some good news that Emily seems to be eating the right foods – cheese and chicken nuggets are high in protein and happen to be Emily’s favorites! We also found out that the strict rule against fresh fruits and vegetables isn’t quite as strict as we thought and, with a lot of caution, Emily can still have a little of her favorite fruit: bananas. Otherwise, less fiber was recommended while still giving Emily whatever she desires in order to meet the pickiness her loss of appetite has caused.

Doctors office playtime

Emily’s platelet count was extremely low today and she received a transfusion in order to get her counts up before her next spinal tap tomorrow. Her ANC is also low (30, when it needs to be above 500). Her lab work this morning showed a slight rise in her protein and albumin levels from the results that originally raised concerns last week but they still remain below normal.

Please join us in praising the Lord that today’s news wasn’t a major setback and please pray that Emily’s body finds balance as it deals with the many toxins and upheavals to her system. 

Good News

The first 28 days of Emily’s treatment are called the Induction. During this period, she undergoes an intensive regimen of steroids and both intravenous (through her port) and intrathecal (direct to spinal fluid) chemotherapy. The goal is that by Day 28 of her treatment, more than 95% of the Leukemia cells in Emily’s body have been killed, placing her cancer in remission. The more successful this first period of treatment is, the better her long-term prognosis is for a permanent cure.

Today we learned that as of Day 8 of treatment, there were less than 1% Leukemia cells remaining in Emily’s blood – more than 99% of the cells have already been killed!

If at the end of the Induction period in 2 weeks, Emily’s bone marrow biopsy confirms this rate, Emily’s Leukemia may be classified as Low-Risk with a 99% cure rate!

We are thrilled to receive this news and to know that Emily’s body is responding to the treatment exactly as it should be. Thank you to everyone for keeping Emily in your prayers. It is difficult to see such a little girl struggling through so much but we know this journey has a purpose and that God is holding her in His arms.

Please continue to pray as we await the results of Emily’s first spinal tap. The preliminary results of this tap (completed before her chemotherapy started), indicated Emily had white blood cells in her spinal fluid. Based on that information, Emily was classified as standard-risk for Central Nervous System Leukemia (CNS 2). We are awaiting further microscopic analysis of the spinal fluid to determine whether the white blood cells were in fact Leukemia cells. If they are, even with the good bloodstream results, Emily’s Leukemia may still be classified as average-risk and require more aggressive treatment in the years ahead.

Auntie Jennifer Visits

As for going home, the doctors have said it is possible Emily could leave the hospital as early as tomorrow night or Friday morning. The antibiotics she has been on to fight a possible infection in her Broviac line will finish at 10pm tomorrow night. If the doctors also determine that her Absolute Neutrophil Count (ANC) is at a safe level, or steadily moving in that direction, she will be released to be with her family once again!

Please pray for the results of the spinal tap tests, that they show positive results for a low-risk Leukemia. Please also pray that Emily’s ANC level will rise so she can return home to her eager siblings and the comfort of her own bed. 

And finally, please praise the Lord that Emily’s blood is responding well to treatment and we have hope for a permanent cure!

Christina gets some special time at home with the kids