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."

March 18

This week you will notice something missing on the cute little face of our Evelyn - Tubey is gone! (Hopefully for good :)

Two weeks ago Tubey was once again yanked out, by mommy this time. Evelyn was very unhappy and stated right away that she "didn't want a new Tubey!" For a few weeks on and off we had been giving some of Evelyn's meds orally to see how she would do and since this had been going well we had considered leaving the tube out. Unfortunately since we were going into steroid week where she has the most meds and her attitude is not always willing we put the tube back in for the week but still tried to give her meds orally. Not happy it had to go back in -

We are proud to say this went well this past week with only one med that needs some bribing/trickery :). So last week at clinic we said good-bye to Tubey! :). Evelyn was really confused at first - usually when Tubey comes out the not so nice task of putting another one in needs to happen. I said it was time to go home and she just kept staring at me like I was forgetting something. But by the time we got home she was willing to show everyone that Tubey was all gone and we "don't need it anymore."
Every week at clinic we have been meeting with the endocrinologist to discuss Evelyn's blood sugars and any modifications that need to happen. Thankfully last week we were able to eliminate three of the four finger pokes and only need to check her sugars in the morning.
If you recall from a previous post Evelyn gets one chemo drug every other week where she gets hooked up to an IV and the chemo runs through for an hour and a half - therefore making it a long morning every other week. There are 15 rounds of this (so 30 weeks). Thursday at clinic I received my April calendar and was reminded we are coming to an end of these 30 weeks :) :)

 

 

Although Evelyn has learned to push around her own IV pole I think she will be happy not to have to be attached to it every other week :).

 

 

This particular chemo drug has caused some unexplained rashes and reactions as well as being the culprit to her low blood sugar so we can hopefully look forward to her glucose going back to normal and not having to poke her finger multiple times a day. We hope and pray everything stays on track so we can celebrate this small victory :).
A few pictures from Evelyn's steroid week, lazy days -

 

Evelyn's foods of choice this week was chicken soup (for breakfast), carrots with dressing, tomatoes, and lots and lots of garlic bread :)

 

        

 

Evelyn stayed pretty active this round and we even got to see her cheeky smile :)

 

 

 

Lindsey and Stephen

 

Habakkuk 2:3 "For still the vision awaits its appointed time; it hastens to the end - it will not lie. If it seems slow, wait for it; it will surely come; it will not delay."

 

 

 

 

 

 

 

March 2

It's been two weeks since last post and another element has been added to Evelyn's treatment. Last week at clinic Evelyn's blood sugar was checked to see if it had improved over the week - unfortunately not much had changed and her sugars were still below average. 4.0 is the magic number and she was sitting at 3.1. A drop in blood sugar can be from one of the chemo drugs she is on. Since she will be on this drug for two more months we have had to learn to control and monitor her sugars daily. That Thursday I talked to our nutritionist about what to feed her to bring up the sugars and maintain them, especially through the night when she doesn't eat for 12hrs. And also the endocrinologist (diabetes) doctor about learning to check the sugars at home with a blood glucose monitor.

For the first four days we had to poke her finger first thing in the morning and record the numbers then go from there. We were sent home with all the supplies needed to check glucose. On Friday I had realized the doctor hadn't told me what numbers were good/dangerous and had never told me to recheck/poke again if the number was low so I emailed my nutritionist. I didn't really worry since Evelyn's numbers were always sitting between 3 and 4 and that's what she had been in clinic. I got a response from my email on Sunday night saying if it was below 4 and not going up she should be taken to the hospital; also I should have been giving her juice (correcting it) and rechecking it to make sure it came back up - no one told me this so naturally we panicked and called the hospital that night. Evelyn was already in bed but we were advised to wake her and poke her finger to see where her glucose was sitting - thankfully it was up to 7.0 so back to bed she went. Monday morning I called clinic to get things sorted out - it seemed to be a miscommunication between myself, our nutritionist, the endocrinology doctor and the pharmacist. After all that we got things sorted out and I came off the phone with a better understanding of everything. I was advised to keep checking it first thing in the morning, correcting if her number was below 4.0 and rechecking to make sure it had gone up.
That Thursday in clinic we had a meeting with the endocrinology nurse first thing to show me the signs of low blood sugar - irritability, sweating, low energy; how to manage it and all the numbers that go along with it. After that we headed over to finger poke then up to clinic for Evelyn's chemo. While we waited for her chemo I met with the endocrinology doctor to answer a few of my questions and figure out a plan for the next two months. He wanted to see how her blood sugar is throughout the day so for the next four days we have to check Evelyn's glucose four times a day, correcting and rechecking if need be. Then we go back to checking once every morning. To maintain her levels throughout the night we have to put a tablespoon of cornstarch in her nighttime bottle - it's proven to hold her sugar levels and so far her number is just above 4.0 in the mornings. Other then that carbohydrates are good to maintain her levels which has been a challenge since Evelyn isn't big on bread, crackers, etc. or eating anything some days! :). The doctor also told me that her low blood sugars could be the reason to her 5:00am wake up time and we should see improvement once we get a handle on it all.
It's been a lot to take in and learn but hopefully it won't be for long and her levels will return back to normal in two months time. But for now Evelyn does really well with the finger pricks and as long as I have a Dora bandaid at the ready she cooperates :).
Evelyn had her first visit to the dentist last week too. About a week prior I had noticed a hole in one of Evelyn's molar teeth, I called our clinic nurse and she suggested we see our family dentist to see what he said.

Evelyn was a little unsure but cooperated knowing there was a treat and toothbrush when she was done. The dentist said it didn't look too bad and since it wasn't bothering her we are just going to leave it. Because of her age and the fact that she has cancer filling a cavity gets a lot more complicated and usually requires sedation. We have to come back in 6 months to have another look unless it starts to bother her.
As you can see its been a busy two weeks and we are hoping for a quiet week ahead before steroids start and Evel comes back ;).
A few pictures to end the post of our days at clinic and our days hibernating from this cold weather

She found the stash of hair clips and wanted one in her hair - there was just enough hair for it to stay :)

 

 

Lindsey and Stephen

 

Jeremiah 17:7-8 "Blessed is the man who trusts in the Lord, whose trust is in the Lord. He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit."