Good Evening,

Today was another hospital day.  It was all-in-all pretty uneventful, but as usual I am wiped out.  It seems to have a subconscious effect on me, even when it is ”easy.”  I come home totally wasted. 

Sharmi and Chantel have both had colds this week.  They seem to keep sharing it back and forth.  One day one is better and I think we are on the mend and then the next day their nose is running and they can’t breath again.  As a result of their colds Sharmi’s ANC was up to 5600 (target 1500).  Since she is sick we will wait until next month before making any chemo adjustments, because her ANC will be inflated to fight the cold. 

I also asked the doctor about Sharmi’s leg.  Last week Sharmi was sitting at the table eating breakfast.  I was on the phone and she climbed down and said, “Mommy, can you help me?  my foot is tight and there are stars on it.”  I asked her if it hurt and she kept saying, “no there are stars on it… it kind of tickles.”  Her doctor said the vincristine is causing this.  It has caused nerve damage and weakening of the muscles in the front of her leg, which puts strain on her muscles in the back of her leg.  The muscle at her ankle is so tight that it pulls her foot down.  This results in tingling and it also makes her clumsy.  I have been noticing that she falls a lot especially when she gets tired.  Apparently this is the cause.  Her doctor has referred us to physical therapy for some exercises to help combat the cumulative effect over the next 9 months. 

Chantel is making huge strides in walking.  Last Friday my parents were here and we were showing off her great walking skills of 4 to 5 steps and she just kept walking.  She was so proud of herself.  She walked fifteen feet between Sharmi and Papa.  That night during worship, we were all sitting in Chantels room and she keep walking between us; grandma, papa, Dean, Sharmi and I.  Sharmi’s technique was a little rough, so Chantel was very motivated to walk in an opposite direction.  Poor Sharmi she was so excited.  She’s kept chasing and pulling on Chantel, and we kept telling her to sit down and let Chantel walk where she wanted to walk.  Sharmi’s pride for her sister is very sweet.  I frequently hear in a very LOUD voice, “Mommy, Chantel stood all my herself… mommy, Chantel walked all by herself” 

Well, this day has been long enough. Goodnight to you all. 

Cheris

Good Evening,

Last Tuesday the girls were swimming in a little pool in our back yard with the neighbor girls and today a week later we were at the park, with sweaters and we were still cold.  Fall has definitely arrived.  The rain and the cold has once again returned to Marysville.

I was just looking at some pictures on the web site.  I can’t believe how much Sharmi has grown.  One year ago she was still wearing 18-24 month pants and now she is wearing 4T.  She has really shot up this summer.   She is doing good right now.  We have had a couple of really good days with health and attitude.  That may all change tomorrow since she took her methotrexate tonight, and it always makes her feel lousy.

The one thing however that she has been complaining of is stomach pain.  She can’t really describe it to me, all she says is,  “Mommy my stomach hurts.”  I have asked if it is cramping, nauseous or yucky and she can’t tell me any more than, “I just don’t feel good.”  I am hoping that it is just due to the increase in her chemo dosage and I hope her body will get used to it and the pain will go away.  Her hands are still peeling.  She just showed me some more spots tonight.  Her entire face is chapped now as well.  It must be bothering her some, because she willingly let me put lotion on it tonight, and she hates lotion on her face. 

She is still actively being a doctor.  This evening she was making her daddy better for at least a half hour.  She had all of her medical equipment out.  She put a tagaderm on Dean’s hand (the sticky bandage that covers her port).  When she took it off she dug at it with one of her midical tools to get it started and then she ripped it off.  Dean told her that they probably had better techniques at the hospital, but I assured him that it looked very similar to me.  Yesterday, Sharmi cured me of all of my sickness with her bucket of crayons.  The crayons doubled as oral medicine that I had to take and shots that she put all over my body.  She insisted on giving me every last dose of medicine (every crayon).  So, when she wasn’t looking I had to slip some into the completed pile.    Last week she also gave my mother very good medical advice.  My mom was headed to a lab appointment for a health study and Sharmi asked.  “Is is going to hurt… Are they going to check your blood… Are you going to get medicine?”  After she got the answer that they would check her blood and it would hurt a little she said, “Grandma, you make sure that you tell them that after they check your blood they need to put a band-aid on it.  Then, when you get home, you take the band-aid off and all of the blood will be in the band-aid and then NO MORE OWIE!”   I am starting to think that she is predestined to be a doctor. 

Chantel had a busy week.  Last Wednesday she took 3 to 5 steps  between Dean, Sharmi and I several times.  She was very proud of herself.  I am proud of her too, but I am not really encouraging development.  I learned the hard way that smart children are very challanging   Mobile children are difficult as well.  I am shooting for “as easy as possible.”

The last couple of weeks I have been working diligently on getting the girls to sleep better.  I  think I finally got Chantel to sleep through the night.  Last night she slept from 6:55pm until 5:55am without making a peep.  That is pretty good considering she has a cold and she has just cut through her 6th tooth.  The only problem is that she is now getting up at 6:00.  Previously, the 4:00am feeding would at least let me sleep until 7:00.  Oh well, I will at least be able to have more quality sleep, once my body learns not to wake up at 2:00am and 4:00am.

Sharmi’s sleep on the other hand is still a challenge.  I have her going down for the majority of her naps by herself now, but I am not making much progress on bed times.  She still wants us to lay with her.  Last night between Dean and I, it took 2 hours for her to fall asleep.  I think we are going to just have to be tough, but that can only last until the next round of steroids.  What an uphill battle. 

Well goodnight to you all.  Thank you to those of you who reminded me that you are still there and praying.  I was surprised, Rick looked it up and said that there are still 250 individuals that check the website a month with 50 hits a day.  That is amazing!  Thank you very much for thinking of us and praying for Sharmi and our family.  Prayer does work!  Thank you from my heart and soul. 

Love Cheris and the Girls,

Good Morning,

Sunday we had another party to Chantel.  This time it was at our house with mostly friends and neighbors, and of course my faithful parents.  Chantel had a great time.  The highlights of course were the cake.  She wiped out an entire individual sized cake.  She had a blast. It was all over her, her clothes, her shoes, and her hair.  After she got a good bath by Grandma, we went out and enjoyed the swing that daddy hung.  Dean worked very hard to get the swing stabilized and hung for the party and he finally got the baby swing up with the help of some friends about 45 minutes into the celebration.  Chantel’s love of it made the work and sweat well worth it.  She was swinging, smiling and laughing for at least an hour.  Every time grandma would try to take her out she would cry and try to crawl back in.  We finally told her that we were going to take her too the slide and we were able to take her out without crying.  Once at the slide she requested “agai agai agia” several times.  We joked that we were just going to bring grandma out some blankets because she was going to be there all night. 

When we were having worship with the family at the end of the day she really surprised us.  She was playing with a little wood peg stacker.  The peg isn’t any bigger than my finger and she was taking off and putting on rings with little difficulty.  I was amazed. 

Sharmi is doing pretty good.  The big hit of drugs two weeks ago has worn off, but I am noticing some minor side effects.  Her face is breaking out in a rash again and her hands and fingers are peeling like blisters that break and peel off.  I don’t know if this is from the increase in her daily chemo’s or the drugs she got at the hospital.  My thought is that it is caused by the daily chemo, because her face started breaking out about 4 weeks ago.  Last week I noticed that her coloring was very yellow, but is seems to have normalized again.

She is so sweet when she isn’t sick.  Tonight she hugged me and said, ”Mommy, I love you.  You are so special to me.” 

Her funny anecdote of the week was last night.  She was looking at flashcards and doing phonics.  She was flipping through the cards and saying, “pu-pu-pu house, pu-pu-pu car, pu-pu-pu snake.”  I laughed at her a little, told her how great she was doing and helped her say, “t -t-t tree,  c-c-c cat”  She caught on and did pretty good.  I love watching them learn.  It is so amazing.

Well,  Goodnight to you all, whoever you are.    Or maybe I am just talking to myself. 

Cheris

Good Evening,

It is hard to believe that it has been a year today since precious baby Chantel blessed our family.  She is growing so fast I can’t believe it.  We have enjoyed her so much.  She is starting to get a strong will like her sister.    I have seen her take a swing at Sharmi when she had enough of her taking toys from her.  A mother shouldn’t say this but is was very cute.    We are really enjoying seeing her personality coming through.  She isn’t quite as laid back as we had thought, but what to you expect with her parents.  Her favorite things to do include riding her car, “walking” preferably holding someones hands, however, she got a lion walker for her birthday that she will use if mom’s fingers aren’t available.  She loves to climb up on a little child sized Noah’s ark bench that we have in the hall.  She feels very grown up.  She is trying to be a big girl.  Last week I was putting Sharmi’s hair up in pig tails and Chantel climbed up on the bed, grabbed the brush and tried to brush her sister’s hair.  After thoroughly annoying her sister I picked up Chantel and took her withme.  As I was walking, she kept reaching back to brush my hair.  This past weekend we had a little family party for her at my parents.  While we were there my mom said she took four steps.  I am sure it will seem like tomorrow when we are having her 2nd birthday and she is running around with Sharmi.

Speaking of Sharmi, she is finally staring to feel better today.  She had a really rough week last week.  Tuesday she had her 12 week doctors appointment, which again means she gets chemo in her heart, and her in spine under anesthesia.  The day started out rough.  The lab nurse was new and she couldn’t get the needle in Sharmi’s port correctly.  Sharmi was so brave.  She didn’t cry at all.  She just sat there in my mothers arms and whimpered, “owie, owie, that hurts, owie…”  Finally after the fourth or fifth attempt I went and got another nurse that was more seasoned to help her.  They were finally able to get it accessed correctly and draw her labs.  Sharmi was being brave, but it made both my mom and I literally sick to our stomachs to watch.  Events like that also bring back vivid flashbacks of the first few weeks of hell in the hospital. 

Sharmi did well from that point until she came out of her procedure.  It was an amazing transformation.  She had been brave through her labs, tired but calm through her doctors appointment, happy through her infusion (chemo in port) and she was even happy enough that for the first time she had my mom hold her when they put her to sleep for her procedure.  But 15 minutes later, when she woke up, we could not recognize her as the same little girl that we laid down to “sleep.”  As my mom put it, “she was spitting nails.”  There was nothing we could do to make her happy.  She was loud, crying, disrespectful, and inconsolable.  The transformation after all of those drugs got into her system was unbelievable! 

I have something to get off of my chest!  Shortly after Sharmi was diagnosed with cancer I had a friend tell me, “I have seen a lot of sick kids.. and they are not disciplined and well behaved.”  She continued, “Sick kids can be just as well behaved as healthy kids, but their parents let them get way with bad behavior because they are sick.”  This has eaten at me for a year and a half.  I have had a lot of experience with sick children in my short years of being a mother and I firming believe she is wrong!  First of all the roller-coaster of medications that they are on creates a roller coaster of illness, pain, hyperactive senses, attitudes, and behavior.  Secondly, the physical trauma and procedures they go through on a regular basis, they relive over and over again through their daily play and in their nightmares.  This too obviously affects their behavior.  Tuesday afternoon, I did my best to calm, comfort and control her behavior after she woke up, but I firmly believe that disciplining her behavior would have been wrong.    To all of you parents out there like me, who get disapproving looks from friends, family, or strangers because your children aren’t disciplined my tempered thoughts are; ignore the people, love your children, and remember that if Jesus were here, He wouldn’t be disciplining them, He would simply be holding them and he will soon be healing them.  We have a strange gift as parents of sick children.  We value the life of our children in a deeper more vivid way then others who have not been faced with loosing them. So tonight when I laid down next to Sharmi at bedtime, she rolled up against me and said, “mommy I want to cuddle, I like to cuddle with you,”  I felt love, appreciation, admiration and gratitude for my little girl deeper than I would have if she had never gotten sick.  I am blessed to love that deeply. 

Last Wednesday Sharmi was very sick.  She had deep black circles around her eyes and her skin was very yellow.  Her attitude was poor and it wasn’t until Thursday night when I was going over everything in my head to try to figure out why she was worse than usual, including an increase in her oral chemo dosage and in her steroids that I realized that had double dosed her on methotrexate.  This is a drug that I give orally once a week, but it is not to be given on the 12th week when we give it to her in her spine.  The provider usually reviews her drugs and reminds us of this, but she was a new nurse practitioner and she didn’t remind me and I didn’t remember.  I guess the good news is that Sharma’s anc counts were high at about 1340.  This is normal for a healthy child, so she was able to survive the major chemo hit.    There is so much to remember! 

After a long week she had a good day.  My sweet little girl is back.    Sorry for using you as my therapy session. 

My last thoughts are when your kids are driving you crazy, think about what life would be like without them.  Then hug them with her whole heart.  Goodnight.

Cheris

PS.  Rick found the update I did on August 20th and has posted it.