Emily has been feeling really good of late – you would never guess, most of the time, that she’s on daily chemo. She’s been a mini-Tigger on springs, bouncing and climbing and jumping – and it’s been awesome to watch her. Unfortunately, Tigger sprung too much yesterday and she now has a cast on her leg.
As Chrissie and Emily were leaving the Infusion Room at the U.C. Davis Cancer Center yesterday, after an antibiotic infusion in preparation for her spinal tap today, Emily was jumping up-and-down on some foot-high, decorative concrete blocks that were outside. Chrissie was holding her hand so that Emily wasn’t putting her full weight on her legs when she jumped but when Emily jumped down onto the grass at the last block, she crumpled to the ground, crying. At first, Chrissie figured she’d probably just sprained her ankle, because who immediately thinks that their kid just broke their leg(?!), and so she took her home, iced it, and put her down for her nap; however, when Emily woke up, she wouldn’t put any weight on her leg. There was no swelling or bruising and Emily wasn’t crying but Chrissie was concerned and so we – Chrissie and Grammie – took her to an Urgent Care. The doctor there advised us to take Emily to the U.C. Davis ER since it had a childrens’ hospital (the Urgent Care wasn’t affiliated with one) and Emily was already being treated there for leukemia. Unfortunately, we ended up there on one of their busiest nights.
We got to U.C. Davis about 8:00 pm – and waited in their Pediatrics Waiting room for five hours(!), before finally being ushered into the Peds ER at 1:00 am. We were in the waiting room long enough for our group to bond with another family who had brought in their two-year-old, who had also fallen – and we were sharing snacks and cell phone videos and I figured pretty soon we’d be inviting each other over for dinners at home! All the while, Emily was really guarding her left lower leg – not crying but not moving it either.
After we got into the ER room and Emily’s leg was checked, they gave her a dose of Tylenol so that they’d be able to straighten her leg for an xray. Pretty soon, between the Tylenol and the general lack of sleep, she slept through the rest of the ER visit. Too bad Momma and Grammie couldn’t do the same. Turned out she has a Buckle Fracture of the fibula and tibia – which is a version of a greenstick fracture, which is fairly common in kids. Their bones are soft so when they break, they break more like a green stick, which bends and doesn’t break all the way through, rather than a dry stick (like an adult’s bone), which snaps all the way across. Her tibia sort of splintered while her fibula did more of a buckle, where it bent several ways. Her Oncologist told Chrissie this morning that it most likely occurred because Emily’s bones are weaker due to all of the chemo and steroids.
Chrissie and I walked out of the ER after 4 am and arrived at Chrissie’s house just before 5 am. Emily slept the whole way home and then nursed and went to bed. Chrissie got an hour-and-a-half of sleep before getting up, driving her kids to her sister-in-law’s, and then taking Emily back to the Med Center for her already-scheduled spinal tap and chemo infusion. After picking up her kids this afternoon, she managed another hour-and-a-half of sleep, then picked up Jason from his car pool, they all took Ethan to batting practice, then everyone went to Adam’s Little League game. Hopefully, they will all get some sleep tonight.
Emily is handling it well, so far. She held court at Adam’s Little League game with her leg spread out straight while playing a game with the other kids. Chrissie will keep any pain covered for now with some prescribed pain medication but the cast itself will take away most of the pain. The Ortho doctor who put on the cast said that kids’ bones heal really quickly and that the fibula will straighten out as it heals. Emily will have the cast for a few weeks and will be followed by the Pediatric Fracture Clinic at U.C. Davis. Enough cannot be said for the care and the caring that U.C. Davis has given to Emily and for the Childrens’ Miracle Network which is supporting the Cancer Center and allowing Emily’s treatments and care to be financially covered. Please support them anytime you get the chance. Also, of course, continue to pray for this family —
God’s little miracle, Emily, turned three this past Wednesday, on May 1st – and this time, she didn’t spend her birthday in the hospital! She spent most of the day at a Children’s Miracle Network function, charming executives and managers from Costco while Chrissie spoke. Chrissie said that Emily spent the whole time while she was talking, twirling around Chrissie’s legs and singing! That would be Emily!
Her three-year birthday party was held the Sunday prior to her birthday. She had two sets of grandparents, several aunts and uncles, along with cousins and friends, all there to not only honor her third birthday but to rejoice in the fact that she had made it through a year of chemo and surgeries and multiple hospital stays. Her brand new, wavy hair is getting longer and she is starting to get some of her little girl plumpness back. She plays and goes about life head first – then puts her arms up for someone to pick her up so she can snuggle – then gets down and starts again! How can you not love that fierce, little spirit —
Medically, her ANC count had dropped recently so she was off of chemo two weeks ago, to allow her system to build up again. Since that was the second time her ANC count had dropped, the doctors restarted her at 50% of her normal chemo dose for a week – increasing to a 75% dose this coming week. It’s a continuing balancing act to keep her ANC high enough that her body can fight infection yet low enough that her body won’t fight the chemo. All we can say is praise God for the doctors who have the knowledge to help this little girl walk this tightrope of treatments.
In the meantime, Emily holds court wherever she is. We were at one of her brother’s Little League games this week and Emily, while sitting on a blanket and playing with her new Minnie Mouse doll, was talking and singing at the top of her lungs – as was said in an earlier post, where IS that mute button?! – and pretty soon, she had six other kids all sitting around her, watching her show! She did the same thing at another brother’s Little League game this afternoon.
She’s still little and you can look at her and tell that she doesn’t have the size or steadiness of a non-sick three-year-old but she lives LOUD and she is Fierce – and she captures the heart of everyone who comes to know her. Thank you, Jesus, for another year with this miracle of Emily.
This will be a quick – I hope! – blog post. I/Grammie have had it jumbling around in the back of my mind for several weeks now, which already shows how not-quick this post is, and I have now left it until the morning of my drive down to Tulare to visit my #3 daughter, Jennifer, and her family. So saying, this post will not be smooth nor polished but I am hoping it will give a glimpse into how this family’s life has been going. In the midst of any one’s – child or adult – cancer treatment, there is a normal life that still has to continue – and this is their “normal” life.
. Chrissie and Jason home-school their five children – even Emily gets some learning – through an awesome home-school program called Classical Conversations. It’s a national organization with separate groups scattered throughout various towns and cities. The families in each group meet together on Tuesdays and then teach their kids at home the rest of the week. Chrissie has been Director of their group for the last two years. Doing that has allowed her to pay for her kids’ tuition for those years and she has excelled in doing it – however, it is also a big time commitment and a lot of work. She has loved the work and thrived on it but she has also spent many hours fretting that with all of the time that Emily takes, she hasn’t been able to do as good of a job as she would like. After much prayer and soul-searching, she finally decided to step down at the end of this year and turn the reins over to someone else. It was a hard, hard decision for her but she feels that now she’ll be more available for time with her family – and she is happy about that.
. Grammie has also made a big change – I retired a month ago – at the end of February. I wanted to be more available to Chrissie to help. Next time Emily is hospitalized, I can stay with Chrissie and not have to wake up at 4:30 and sneak into the hospital bathroom to get dressed and then tip-toe out to go to work! ’Course, I never had to pay for parking because it was too early for the garage parking gate to be down – but you have to give up some things!
. Emily is now in Maintenance – with daily chemo pills, which Chrissie gives her at home and intermittent hospital visits for chemo infusions and spinal taps. For five days out of each month, Chrissie’s whole family “gets” to be wrapped up in Emily’s five-day course of steroids. That week is blessed with a clingy Emily who doesn’t want to be put down – Emily talking at the top of her voice range (where DID they put that mute button on her?!) – and a very demanding Emily (in a very loud voice, of course.)
. Car troubles still occur. Their van died several weeks ago – to the tune of an immovable transmission that will cost more to repair than the van is even worth They are now managing in a borrowed car – thank you to Liz and Jeff, many times over, for doing that for them – but they need a van or something large enough to hold the whole family at one time. They could use your prayers – and any ideas – along those lines.
. My/Grammie’s new normal is that I always travel with a camping mat in the back of my 4Runner, just in case Emily gets admitted – and I have a “Go” back in the back of my closet that has it’s own set of toiletries always there so that all I have to do when Chrissie calls and says they are on their way in to the hospital, is throw in some clothes and take off. Chrissie and I each have our own set of loungey black pants – soft enough to sleep in but stylish enough to look good when you are still wearing them all the next day while the doctors and nurses come in and out of the room! We both always end up with those packed in our bags – as she, of course, also has her own “Go” bag.
. Chrissie will call me every-now-and-then to talk about something she has looked up online. Any mother would be doing the same thing – trying to see where her baby’s treatment and life are headed. Emily is in a high-risk group so that adds further concern. Recently, a little girl whom Chrissie was following on another blog, died. That hit Chrissie pretty hard. All you can do is try to be there for her and hold her and cry – and then you go somewhere and cry yourself, because this is your baby, whose baby is so sick, and you are crying for both.
. Emily has grown 1 1/2″ in the last year – and has gained a pound!!! She now weighs more than my cat! She weighs 23 pounds – and is currently no longer at the zero percentile on the height/weight charts – she’s now at 0.2%! She is frugal with clothes, though, as she can still wear the outfit that Bapa/Grandpa and I gave her two Christmas ago. You have to look at the pluses!
. The family has three boys in Little League, which is another reason Chrissie wanted more time at home. Between games and practices, it requires a lot of sitting for hours on bleachers so that when each kid looks up from his game, he sees a set of eyes, just watching for him. Those are the important things in life. We were at one of the games on Monday – day before yesterday – and as I was watching Emily go to the trash can to throw some little bit of trash away – she, of course, had to go to the furthest bin away from us(!) – it was obvious that her long, skinny legs do not have the strength of an almost-thre-year-old. She runs and dances and twirls and goes up-and-down slides but her legs are wobbly and her gait is a little off, due to chemo side effects. Sometimes she tells Chrissie that her legs hurt.
. Easter was celebrated with going to church together – and then some time with family at Bapa and Grammie’s house. (Wish I could figure out how to post pictures side-by-side like Auntie Plum did – so you’ll just have to put up with them spread out in a line.)
. Jason and Chrissie are continuing to try to help and support the Childrens Miracle Network Program, which has helped them so much. Chrissie called me yesterday, all excited because she had been personally asked to speak at an upcoming program in Livermore. They are obviously involved in Emily’s care but are also trying to use this time and their own experiences to reach out and help others.
. Emily seems happy and is more often now than before feisty and outgoing and playful and loving. She could bring a smile to your face in a heartbeat. She is tied to her Momma, of course, and God gave her those long, skinny arms so that she could wrap them all around Chrissie’s neck to pull her closer. To Emily, this is “normal.” Emily was lying down on Jason and Chrissie’s bed one night and Jason made a comment to her that one day she wouldn’t have to have her Broviak catheter tubes anymore (the long tubes that are permanently implanted into her chest so she can get infusions and blood draws without constant IV sticks) – and Emily just looked at him and said, “I don’t ever want my tubes out.” To her, this is normal. It is not, of course, but we – her family and extended family – have all had our lives changed where “normal” is not, but it is —
So this has been a brief jump into their lives —- this post is a bit disjointed and will not be reread before it is posted(!), but Grammie still has a pile of stuff on her bed that needs to be crammed into suitcases so that she can get going down the road. And, in reality, our lives are a bit disjointed now anyway – and “normal” is in quotes because it is, but it isn’t —- and life goes on —
Please continue to pray for this family – Emily’s treatment and recovery – a “new” van for them —– And we will continue to pray for you – for without all of the friends and family and home-sch0ol families and medical personnel, who are also now family, we would have all collapsed long ago on this journey. Thank you —
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!
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
The girls play together, brushing each other’s hair
and we’re able to focus on things other than cancer. It’s good.
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.
Emily has had another hospital admission – and discharge – and this one had everyone scratching their heads. Last week, she threw up on Wednesday night - and everyone figured it was just the stomach bug that her sister, Sophie, had had the weekend before. However, Sophie threw up four times in one night and then was done, but Emily kept dragging it out. She had her monthly spinal tap with intrathecal chemo (chemo into the spinal fluid) on Friday morning – then threw up several times that night. She gets this type of chemo often and has not had a problem with it in the past so Chrissie still was thinking it was a stomach virus. By Saturday, Emily was getting more clingy and fatigued. She wanted to be held all the time and even asked Chrissie to put her to bed at night. Totally not normal Emily. Not normal for any two-and-a-half-year old. On Sunday, Emily was pretty close to lethargic – when Chrissie would put her down to do something with her other kids, Emily would just lean over wherever she had been put down and stay in that position until Chrissie came back.
Chrissie called the Oncologist and was told to bring Emily to the ER at U.C. Davis. The doctor had ordered a head CT scan, thinking Emily might be experiencing a chemo toxicity, which can cause a form of encephalitis. By the time they got to the ER, Emily had perked up and was talking and playing – kind of like she did the night we brought her in last February, when she was first diagnosed with leukemia! Emily just has to always be different! Once the doctor saw her in person and her labs came back showing a low glucose of 53 and low electrolytes, indicating slight dehydration, the CT scan was canceled and they admitted Emily overnight to watch. They boosted her with IV fluids and IV dextrose (sugar) and figured she’d probably go home the next day.
Of course, Emily never does anything easily. She threw up a few times again on Monday and again Monday night and Tuesday morning. The strange thing was that she never had a temp and she’d go hours in between throwing up – and during the in-between times, she’d be laughing and feisty and playful. On Monday, her nurse, Nicole, made a fort for her by pulling the trash and linen containers out from under the shelf in the room, completely sanitizing the area, laying a blanket on the floor, then taping a sheet on the shelf above the opening so that it hung down and made a door! High fives for the Peds nurses at U.C. Davis!!! Emily and Auntie Gaby hid inside the fort when I/Grammie got there after work on Monday – I “hunted” all over the room for them – and every time I would call out for Emily I’d hear “I’m in here” (in a little voice), then giggles! – and finally I got totally “scared” by two surprises when I opened the door to the fort! I cannot tell you what the poor food cart lady was thinking when she came into the room to deliver the nightly food tray and she had people talking to her from behind a sheet!
On Tuesday, one of Emily’s blood cultures came back positive for strep. None of the doctors thought she actually had a strep infection because she just didn’t act like it but, just in case, they drew a second set of cultures and started her on a 24-hour antibiotic. The other odd thing was that her ANC was 6900, really high. She has been as low as zero – and 500 is considered her minimum for being able to fight off infection. The whole thing was just a puzzle – no easy answers – but she still was doing this business of throwing up intermittently, not wanting to eat much or drink, and then being fine in-between.
Finally, on Wednesday, she had gone almost a day without throwing up and was drinking more. The second cultures came back negative for strep and she informed Dr. Ducore, her Oncologist, that she could leave because she was going to put on her shoes! Then, after he left, she told Chrissie, “He’s my favorite!” So they released her – and Chrissie – with a diagnosis of probable gastritis, a stomach inflammation, and dehydration. On the way home, Emily informed Chrissie that “my boys and Sissie want Taco Bell” – and so Chrissie went to Taco Bell and got some for Emily, as well as her boys and Sissie!
Emily is now home and Chrissie and Jason got to snuggle with all of their kids last night. We may never know for sure what happened with Emily but we do know that, as her nurse once said, we just have to have a low threshhold of concern for Emily – when she starts to show symptoms, she is usually sicker than other kids would be with the same symptoms. We also know that the support system for Emily and her family is still strong. Thank you to everyone who organized and provided child care and rides for her brothers and sister and who brought meals and company to Emily and Chrissie in the hospital. And, for now, this is the end of this mystery — !
Just like last year, our Valentine’s Day was spent in the hospital, but this time only as visitors. Sophia, Emily, and I visited the Davis 7 Playroom this morning to participate in some fun valentine activities with the Children’s Miracle Network (which was extra exciting for both girls, since we’re never allowed in there when Em is admitted!).
Emily is doing really, really well. Her ANC/immune system has been a bit low the past two weeks, so some of her treatments have been put on hold until it rises, but you couldn’t tell unless you knew! She is spunky, active, rambunctious, and full of life … basically, she’s back to her normal self!
Her hair is coming back in thick, wavy, and fast! And she’s totally loving the Mohawk, asking for it every day. We even sprayed on some pink, and she’s already planning on wearing it to church next week. That’s our Stitch!
When people find out that Emily has leukemia, the first question is almost always, “How did you know?”. To answer that here, I wrote, in detail, about the events leading up to her diagnosis, and I posted it on a new page, which you can go to by clicking this link.
Two days from now will be one year from the time Emily was diagnosed with ALL, so it’s probably not surprising that I’ve spent a lot of my recent time reflecting on the past year. Today especially has been a somewhat emotional day, because we attended our annual Co-op Valentine’s Day Party this morning, and it was right after this party last year that we took Emily to the ER at UCD. On the way to the party, I wondered how I would feel once there, and in fact, I started tearing up a bit as we passed the fast food restaurant we ate lunch at after the party last year. Yet once we arrived at the roller skating rink, I realized how –even though I now know Emily has cancer –today I feel less worried and anxious than I did last year when I had no answers as to what was going on with her.
At this time last year Emily was simply not herself, my instincts told me something was very wrong, and I was very, very worried. During the party I couldn’t hold back tears while discussing it with some of my friends, and I was on pins and needles waiting for the late afternoon when I planned to take her to the Doctor -again. Yet even though her diagnosis was devastating, it was so much worse not knowing what was wrong.
Today was a different day. Last year Emily couldn’t make it around the rink one time. This year she happily skated all the way around (it took ten minutes to go around one time!) and cried when I had to turn her skates back in. Last year she fell asleep in her aunt’s arms. This year she played and danced and laughed for two whole hours, then ran around in the parking lot with her siblings and cousins afterward. Last year she was as pale as a ghost and covered in bruise. This year her cheeks were flushed and the only bruises she has are the ones she earned by cheerfully, rambunctiously playing this past month. Last year she wouldn’t eat anything. This year she scarfed down a whole bag of popcorn, a cookie, half a bottle of water, and then came home and ate her entire lunch.
Today was a good day. Almost healing, in a way, because I was able to see a healthy(ish) little girl doing what she was supposed to do. And even though I know what she’s been through and what she still has to face, I have peace. Last year God was nudging me to keep seeking answers; this year I feel the peace that surpasses all understanding, knowing that God has always had the answers.
When we got home today, Emily was in such good spirits I had to snap a few pictures. Here are her and her siblings today
Please praise God with me that Emily’s IGg transfusions seem to be working! Her brothers and sister all came down with an illness last week, but Emily stayed healthy!