Things have been pretty good for our little miss lately. Well...until yesterday, but I'll get to that later. She's growing up. It makes me sad- I feel like she/we got robbed of her toddlerhood in some ways.
She's darling though. She is sweet and sassy, but more sassy than sweet lately. She can do it all herself and waddles around like she owns the place. She's in charge of her brothers and definitely has her dad wrapped around her little finger. She loves chocolate milk, hates doing her hair or wearing cute clothes. She wants to wear a skirt with a shirt that doesn't match or the oldest, shortest worn out sweats with a tank top or junk shirt that she can find. No matter what you put on her, she'll respond, "I don't like that one." or "That's too tight for me." Etc., etc. Seems like it's a never-ending clothes battle. Then when you do convince her (because we're going somewhere), she rips her hair out and dresses down the minute we're home. She's all about comfort. And most of the time...I just let it go and let her be her.
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On April 3, she celebrated her 3rd birthday. It was a busy weekend, with General Conference, my birthday, her birthday and Easter all within a few days of each other. She had a cute Easter egg cake.
We did a combined birthday party with her cousin, Presley, who's birthday is about a week after Rylee's. We invited all of the cousins to the Bounce House (R Jump) to celebrate.
Rylee loves the big slide and is really good at climbing up all the obstacle course things up to the slides. We opened gifts, had cupcakes and let the kids play for a few hours.
She loved her gifts- she got some Barbie stuff, a Polly Pocket Limo, some summer shoes and a mini children's song book and Book of Mormon. (She loves playing church with Jace, so it was perfect. She's usually hauling my big song book around.)
She had a pretty good time...until she didn't feel well. This was her at the end of the party- she had had it. "It's my party and I'll cry if I want to..." Because of conference, we did the party in between sessions, which also landed at her nap time, so she was tired, but she also came down with a fever after we got home and wasn't
feeling so hot for the rest of her birthday or the day after. Darn it- I'm glad she was able to have fun for awhile though.
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Most days are pretty typical for her. She likes to ride her scooter, jump on the trampoline or swing.
She enjoys coloring and playing stuff with Jace like house, school, church, restaurant, games, etc. They usually get along pretty good. She also like combing hair, getting dressed up and getting into all of my shoes and jewelry. That day, her Barbies were hanging out at the pool of flowers.
I've had her start doing chores with Jace this year and she does great at them. They have to unload the silverware and sippy cups in the dishwasher, put their clean clothes away, carry all the dirty laundry/ baskets to the laundry room, clean the toothpaste out of their sink, pick up the mud room and put their toys away/clean their bedrooms. It's amazing how capable kids are when you give them some responsibility/expectations.
She's been going to nursery and having fun there. It's fun to see her developing friendships. She and our little neighbor Annie have been so cute this spring as they run around, trying to keep up with all the big kids.
She's had fun with the little cousins too. They love 4-wheeler rides and doing puzzles or playing in the house together. I've noticed that she's very caring and mother-henish. She likes to take care of the little ones. She'll squat down and get at their level then say..."You want that? ...O tay, here you go." Or drag Jaden by the hood and say, "No bubby!" and shake her head in disgust at him. I love it.
But...don't let me fool ya. She's got her moments of mischief as well-climbing pantry shelves, making a water mess in the bathtub and having her spells of stubbornness, "No..I don't want to." Overall though, she really is a pleasant child.
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Old Hurdles: In addition to her everyday life, we're still dealing with the same old hurdles of cancer. For some reason, many people lately have been under the impression that Rylee is done with treatment. That is not the case.
We're still in the maintenance phase which consists of monthly chemo treatments and spinal taps every 3 months. We also have our same home-medication regimen which consists of: At home chemo (Methotrexate) once a week (we give this to her); Mercaptopurine daily (this is kindof like a super vitamin); Dexamethosone 5 days/month (this is a steroid that is given after chemo treatments monthly); and Dapsone, which we give her once a week.
She still has her port in as well (that is what they are cleaning in the picture- prepping to access it). She will complete treatment December 12. At that point, all medication/chemo will end and we'll be in a wait/watch period for nearly 3 years. (To reach the 5-year survival mark).
The first 6 months following treatment are supposed to be the scariest in terms of watching to see if her body is able to produce normal, rather than Leukemic cells. So...while I'm thrilled to finish up with the treatment phase, I'm still uneasy about how the next phase is going to be. Right now we're in fight mode, trying to get rid of it, the next phase is watch mode, so you feel more vulnerable. Concerns and worries will just take on a different focus.
Sometimes it definitely feels like even when we're done...we're not done. But...we're getting closer.
This is what her port looks like when accessed. They push a 1/2 inch butterfly needle into the port, which feels like a button (about the size of a quarter) under her skin. The needle is attached to a little hose-like line that has a valve on the end where they twist syringes on & off of it to take blood or insert medicine or whatever they're doing that day.
We'll probably have her port removed in a year from now to give it some time to see how things are going. She'll still have to get blood checks regularly and will continue regular Dr. visits once treatment ends. Once we remove her port, they'll just take
blood from the arm.
Here's Rylee in her cancer kingdom. I just love Teton Oncology. When Rylee was diagnosed, she was their youngest patient. Shortly after a 17 month old was diagnosed with eye cancer and another baby had kidney cancer. Over the years, more youngins have joined this unfortunate club as well.
The nurses converted one of the rooms to a pediatric room and put toys, books, stuff to color & play with, etc. in there. They disinfect everything after each kid too. Small things make such a difference & I feel like this office really get's it. For instance, many of their staff has personal experience with cancer- having children, spouses, grand kids, etc. who have been through it. There is just such a feeling of understanding there, which I really appreciate.
Dr. Hancock has been so wonderful for this area too. Not only bringing his qualifications to help so many in this area (he has patients from Salmon to Blackfoot and beyond), but by organizing training to improve the nurses skills and hospital staff. Last year he organized this whole training session for his nurses, having nurses from Primary Children's come and teach additional training for dealing with pediatric patients. Seriously, what a noble profession- one that really makes a difference. I've been glad that we've been able to be part of this trail-blazing effect that was needed in this area. You probably had no idea (like us before), but rest assure that Madison Memorial ER is now better prepared to deal with pediatric and cancer issues specifically. It blew my mind at first to learn that they didn't stock certain supplies that were absolutely necessary in treating pediatric patients. Although it caused
us some emergency trips to Salt Lake, I'm glad that they now are better prepared and have the supplies they need to treat us and others in the future.
This is Rylee before her spinal tap in March. Another example of a good medical professional going beyond his required duties. There was a mix-up in scheduling, so we had to wait for over an hour for her procedure to start. So...the nurse blew up this XL glove, drew a face on it and Rylee played with it and bounced it in the air while waiting her turn. She sat it next to her on her bed and took it into the procedure with her. I just appreciate all the people who have helped make this journey easier for her & us.
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And..
New Hurdles: Sometimes I look back and am relieved at all that is behind us, overwhelmed at all that we've been through and experienced. Sometimes I get so excited for this to be out of our lives. In ways, I'm on a countdown- only 7 more months left to go. 7 more rounds of chemo, 3 more spinal taps...it's getting so close, it actually feels like it's really going to happen.
We've honestly been in a really comfortable place lately. Rylee has been blessed and has had minimal complications or concerns the last several months and we're feeling life resume to a pretty normal pace. It's been so good, sometimes we forget what we're still dealing with.
That's why days like today...and yesterday are hard. We ended up in the ER again this morning. I haven't been scared for Rylee in awhile, but today I was.
On Friday night, she crawled into our bedroom about 1:30 a.m. I figured that her leg just must be asleep or something, so I took her to the bathroom and put her back into her bed. Saturday morning she was up and around and nothing seemed wrong. Then a few hours later, she wouldn't walk anywhere and said that her legs hurt her really bad. Justin carried her around most of the day and we didn't know what to make of it. She could only walk on her tippy toes and her legs were in a lot of pain, they would just shake if she put any pressure on them. She wouldn't let us try to rub them or even touch or skim them for that matter- she was hurting. As the day went on, her legs started getting ice cold from the knee down, so I started getting nervous. I called Dr. Hancock and asked him if this seemed familiar because we've never had anything like this happen before. He said to put heating pads on her legs and keep her warm and to watch things. Last night, she was in pain throughout the night and woke up with a fever and complaining of a headache.
We've been in this phase for so long now, when something new comes about....it's frightening. What if it's relapsed..or spread.. or what if she got an infection...or is it just a reaction to a medication? Then it goes to...what if the pharmacy messed up (which has happened)...What if there's nothing we can do...? On one hand, you want to keep your cool and assume that it's probably nothing. On the other hand, you're scared to death and prepare yourself for the worse. We've had to make some pretty tough calls at times. It's horrible and helpless feeling... there are just so many factors and I only understand a fraction of them. Yet...I am her advocate and the one whose supposed to be able to kiss it all better. There is just nothing worse than watching your child suffer.
So, at first the Dr. was afraid it might be something like meningitis, but after examining her and looking at her blood, it was determined that it was an adverse affect of her chemo medicine (Vincristine) from treatment this month. She's gotten this medicine in the same dosage for the past year and a half monthly and treatment was like 15 days ago, so it was a little unusual that all of the sudden she has this reaction, but we knew it could happen, it just never has happened. It's really put things into perspective for me and I realize how blessed she's been throughout treatment. It made me realize that she's been spared a lot of pain overall, which I'm so grateful for.
Peripheral neuropathy is the technical name of what she's been dealing with. Sometimes it's referred to as falling foot though and ironically the nurse was just talking to me about it at her last treatment. Here's what it says about it:
Although uncommon, a serious side effect of decreased sensation and paresthesia (numbness and tingling of the hands and feet) may be noted. Sensory loss, numbness and tingling, and difficulty in walking may last for at least as long as therapy is continued. These side effects may become progressively more severe with continued treatment, and your doctor may decide to decrease your dose. It is caused by the burning off of the myelin sheath which is the "insulation" covering the nerve endings.
Mind you, she's only 3 years old. It's completely heartbreaking. It's hard to say how long this will last. Right now, we're trying to keep her comfortable with Tylenol for the pain and are keeping hot rice bags on her legs and having her take it easy and rest. I'm just letting her do what she can as she feels up to it. Keep her in your prayers.
Another new hurdle that we've started is speech therapy. She's doing great and loves to do her homework and practicing her words. She's working on the lettter "f" and "d" in the final sound (at the end of a word). One problem we're seeing is that she ommitts the last sounds of words, like saying foo instead of foo-d. She started at the school, but now that it's out for summer, we plan to pursue private therapy during the summer and probably double up and do both in the fall to move her progress faster.
We're taking it a day at a time, one hurdle after another. I think we definitely have a better understanding of long suffering and what it means to endure to the end.
And...because this is already the longest post in history, I'll leave you with the the lyrics to the song, Consider the Lillies, which is my dad's favorite song and has been on my mind today- the last verse particularly.
Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.
He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.
Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the
mountains,
He knows the meadows where they feed.
He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.
Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.
He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.
We had a great Halloween. We decorated (not carved or painted) our pumpkins. These pumpkin parts were a great find- very kid-friendly! I loved how fun it was for the kids to pick their faces, plus it was clean and the kids were able to do their pumpkins independently for the most part. Your pumpkins don't wither away either- I just took the parts out and now they are "fall pumpkins" on our doorstep for Thanksgiving. 
Jace (football player) had a Halloween parade and party and Rylee's (cute bee) preschool class dressed up too. Little bubs went as a skeleton and was as cute as can be. We went trick or treating around our neighborhood & the weather was actually great! I wish Idaho always had a warm fall.
Combined with this sitting trick on the chair. Resulted in this tie-down:
I had to rope off all of our dining chairs. The rope solved the dining table problem, but that just gave him the challenge of the snack bar. He can now get up to the snack bar from the attached swivel chairs. 
He jumps right into situations, without fear.
But....there is just something so sweet about him at the same time. He knows how to wipe and blow his nose and it's just too cute. I love hearing his language take off as well.
