May 19

Today Charlotte turns 4! :).

 

We thought we would take this opportunity to do a blog post all about her and the big sister role she plays in this cancer journey. We are so proud of her and how she has handled everything this past year. She is an easy going girl and always up for an adventure (or a trip to the hospital :).

She enjoys life to its fullest - always excited about whatever is going on. We have been very blessed that she is an independent girl who plays well by herself or anyone else - it's made things a lot easier with everything concerning Evelyn.
Charlotte and Evelyn have become quite the pair these last couple months.

They need each other, depend on each other and miss each other when they are apart. Every Thursday Charlotte goes to our Aunt's house for the morning while Evelyn heads to clinic and when they come home Charlotte can't wait to see what Evelyn picked from the treat box and Evelyn's all ears as Charlotte tells her what she did at the library. Charlotte is a sensitive girl with a big heart so when Evelyn is on steroids she's usually on the receiving end of Evelyn's rage but is also quick to help her or make her comfortable with her blanket and lion.
Charlotte is a girly girl through and through - afraid of bugs, lover of shoes, purses, dresses and anything princess. We can usually find her singing or dancing trying to convince anyone and everyone to dance or sing along :).

Her dreams are limitless and her imagination even bigger - we look forward to watching her live out some of those dreams :). She's loves to read, craft and write and can often be found at the table immersed in any of these.

 

For as quiet as she can be she is also known as the loudest one in the group - she gets excited easily and when she does her volume increases as well :). She's my right hand girl, my sidekick, my helper - always willing to do whatever asked of her - a mother couldn't ask for better.
She reminds us daily to laugh often, forgive easily, be kind and recognize the joy and beauty in the little things. God has blessed us beyond what we could have imagined in this sweet girl. We thank God every day for keeping her happy and healthy - we are so lucky to call her our daughter.

Happy Birthday Sweetheart!

Lindsey and Stephen

Psalm 127:3 "Behold, children are a heritage from the LORD, the fruit of the womb a reward."

 

 

May 12

Thankfully after a crazy couple of weeks things have settled down and the last two weeks have been pretty quiet. Steve was on afternoons last week so he tagged along with Evelyn and I to clinic on Thursday. Evelyn got a check up and she unfortunately lost 2 pounds over the last two weeks. We think Evelyn's been dealing with a bit of nausea the last couple weeks and hasn't had much of an appetite for anything. Because of this we have had a hard time keeping her sugars up and her readings have been really low - usually below 3.0. Sitting in the 2.0-3.0 range can put her at higher risk for seizures, among other things. We were advised for the weekend to give her Pediasure if she isn't eating much, try to give her the specific foods to maintain those sugars and continue with the cornstarch in her nighttime bottles. Our doctor also wanted us to check her sugars at midnight to see where they are sitting. This is a steroid week and usually her sugars go up - which they have but once she is off the steroids again if her sugars continue to stay below 3.0 Evelyn will have to get the NG tube put back in. That way we will be able to put the necessary nutrition down the tube to maintain her sugars instead of trying to convince her to eat what she needs to eat. Of course this is the last thing we want since Evelyn has been doing well without the NG tube and she's very proud to show everyone how well she does without it. We are willing to do whatever we can before we go back to the NG tube. This is a little disheartening because we expected to see her sugars rise since going off one of her chemo meds but instead they have continued to dip each week. Keeping track of and maintaining Evelyn's sugars is and continues to be a challenge - it takes a lot of time and effort to keep her sugars maintained but we continue to put do our best, say a lot of prayers for patience and hope her sugars stabilize soon. When we look at the big picture Evelyn is and has been doing really well over all so we focus on that and daily thank God for His hand in this journey. I'll end with pictures :)

Fun times with Charlotte

 

 

 

Steroids started off goofy this week..

 

 

Had a lot of this is the middle..

 

 

But is ending like this -

 

 

And check out the hair! :)

 

 

 

Lindsey and Stephen

 

Proverbs 16:3-4a "Commit your work to the LORD, and your plans will be established. The LORD has made everything for its purpose,"

 

 

 

 

 

 

April 23

It's been a crazy busy couple of weeks at the Horsman residence. Last week Tuesday morning Evelyn woke up a little crankier then normal and seemed more tired as the morning went on. She wasn't interested in food or drink and started to feel a bit warm before her nap. I took her temperature but it read low so I put her down for a nap. Two hours later she woke up and her fever was up. This was the first time she had had a fever since her diagnosis so it had us a little nervous and on edge (fevers aren't something to take lightly in a child with cancer and often need to be addressed right away). I called the clinic at Mac and talked to our nurse - she advised we keep a close eye on the fever, check it in half an hour and see from there. Evelyn continued to slow down and showed signs that the fever increased - sure enough, I checked it again and it was even higher. I called the clinic back and we were told to come to the ER. We packed a few bags (expecting to stay the night) and off the four of us went to Mac. We arrived around 4:00pm and was brought into a room in emerge shortly after.

 

They took Evelyn's vitals, inserted a needle into her port and took blood. After 6 hours of a lot of poking, tears and waiting it was determined Evelyn had an ear infection. Big sister Charlotte was along for the ride - most of the time she was distracted by a movie but every so often she would look over and say "You're doing good Evie, you are being so brave." They have developed a tight bond these last months - Charlotte has become Evelyn's biggest encourager, Evelyn often calming down quicker when the words are heard from her big sis.

A prescription was written up and we were given the go-ahead to go home since her blood levels were good. We were very excited - usually with a fever you can count on getting admitted for a night or two.
Evelyn was scheduled for her lumbar puncture last week Thursday and because she had to fast the night before her blood sugar was going to drop really low. The doctors felt more comfortable for her to be monitored overnight and hooked up to a sugar IV so those sugars would stay stable. We had to take Evelyn back into clinic the Wednesday morning for blood work and a check up. Because a bed wasn't going to be ready until around 7:00pm we headed home for the rest of the day.
After dinner we dropped Charlotte off at our Aunt's house for a sleepover then the three of us headed to the hospital for the night. A little snack before heading up to the room -

At first Evelyn was apprehensive when she saw the all to familiar crib and room but it didn't take too long before she was walking around like she owned the place :). They changed things around in the ward a bit - most cancer patients get their own room instead of sharing so we had a nice big room all to ourselves.

Her port needle and IV were hooked up, vitals taken and by 10:30pm Evelyn was asleep in her crib. I was dealing with a little bit of a stomach bug so I went home for the night and returned the next morning.
Thursday I arrived bright and early to find Evelyn had slept till 6:00am - we were very pleased with this since she was hooked up to an IV and had her finger poked a couples times to check her blood sugars throughout the night. Because Evelyn had had diarrhea she was isolated to her room and she was also put on the end of the list to go in for her procedure in case she was carrying a virus. She had to fast from midnight until she went in - she did very well all morning, watching cartoons and sucking on her empty bottle, scaring every nurse and doctor that walked in thinking there was something in it :).

Evelyn was also getting an echocardiogram done as well as her lumbar puncture - that gave Steve and I about an hour to run a few errands and grab something to eat. Waiting for her to wake up -

Everything went well and Evelyn woke up fairly quick. We headed back to our room to recover and finish up her chemo. We tied up loose ends, packed our bags and was discharged.

We rolled in the door around 3:00pm, happy to be home and sleeping in our own beds that night.
Unfortunately Evelyn is currently on day 8 of having diarrhea so it's been a challenging week - changing diapers, doing laundry and keeping up with her steroid demands :). We think it may be a side effect of the amoxicillin she's on for her ear infection or a bit of the stomach bug going around our house. I called clinic yesterday to see of there was anything we could do but as long as she was staying hydrated we were advised to stick it through and keep her as comfortable as possible. Steve and I calculate we've gone through 170 diapers and four tubes of diaper cream in those 8 days! Needless to say, its been a crazy weekend :). We know this is just a busy time (they come and go in this journey called cancer) and once everyone is feeling better things should fall back into routine.This Easter weekend we were reminded of the ultimate sacrifice Christ made for us and it couldn't have fallen on a better week for our little family. We lay our worries, our stresses, our burdens at the feet of the cross trusting that he has done the work; that he will give us the strength to get through these busy times. And knowing that, our peace is found.
Looking forward to a steroid/flu free weekend :).

 

 

Lindsey and Stephen

 

Hebrews 4:16 "Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need."

 

 

April 3

We are slowly making our way to the surface of a very rough steroid week - Evelyn's symptoms started full force almost three days earlier then normal so its made for a very long weekend. On a positive note Evelyn has been doing well taking her meds orally even through the nasty steroids. We are so proud of her especially since most mornings and nights she is required to take 3-5 different meds. Lately she has insisted on administering them all by herself - picking the order, saving the 'best' for last and squirting each syringe into her mouth :).
Here is a little glimpse of the way we stay organized and on top of all her different meds

Once again last Thursday we met with the endocrinologist to discuss Evelyn's ever present low blood sugar numbers. A few weeks ago it was suggested to put cornstarch in her night time bottle - this should have brought her sugars up and maintain them through the night so her numbers weren't so low in the mornings. Unfortunately this wasn't helping and her numbers were at her lowest, dipping to 2.4 some mornings (the normal range for her age is 6-12.0). Two weeks ago we had to start adding the cornstarch to her naptime bottle as well to see if that made a difference. We gave it the week and the numbers still seemed to be all over the place so we have had to add yet another bottle with cornstarch during the day. It's been hard and confusing to determine a pattern/solution since the low blood sugar is caused by a chemo med and not diet, therefore we continue to record her numbers and food intake and meet with the endocrinologist doctor every week to make any needed adjustments to keep those numbers up. On a side note cornstarch is high in carbohydrates so we've noticed Evelyn's weight has jumped since adding all this cornstarch - she has gained 5lbs in the last three weeks and now fits in most of Charlotte's clothes :).

A week ago we welcomed another little blessing - Waverly May - a new niece to us and cousin to the girls. All is well with Kevin, Kara and Waverly and the girls are so in love. She's been spoiled with lots of snuggles from both of my girls, especially Evelyn :)

A few pictures from clinic :)

Lindsey and Stephen

Isaiah 41:13 "For I, the Lord your God, hold your right hand; it is I who say to you, "Fear not, I am the one who helps you."