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.

Good Evening,

 I just realized that the update I wrote last week didn’t get posted to the page.  It was a really neat one.  I am sure I told it to post because it isn’t even in my drafts any more (bummer).  I will check with Rick and see if he can find it before I try to recreate it.  It was about Sharmi telling us at dinner about her sitting on Jesus lap, up in heaven as if she really had done it.  It was a special post.  I have no doubt that the devil enjoyed messing that one up.  I’ll try to recreate it if Rick can’t help.

Well, the current update is that everyone is “healthy,”  as healthy as we get in this household.  It is the calm before the storm.  Sharmi goes in on Tuesday again for a doctors appointment and chemo, which includes sedation this time (I hate those days).  She also begins another week of steroids so we will start that misery all over again.  

Two weeks ago I took her for her first dentist appointment.  She did really well all-in-all.  However, the highlight of her trip was on the way down.  She diligently looked for red cars and shouted, “LOOK MOM, that car is the same color as your HAIR.”  Then she would laugh hysterically.  She unfortunately was correct.  I went to get a blond and red weive in my hair and five hours later it was red.  After my hair had peach stripes on top and was a sandy gray color on the bottom we decided to see what I would look like as a red head.  The first few days it was really bright.  It really did resemble a shiny new car.  When I came home after just getting it done Sharmi starting laughing immediately and said, “mommy, your hair is funny, your hair is funny.”  Fortunately it has mellowed out a little bit and it looks pretty nice now. 

Chantel seems to be doing better.  She is growing so fast.  She took her first steps last Sunday when my parents were here.  We were all hanging out in Sharmi’s room and she took two steps from my mom over to me all by herself.  I unfortunately have to take mom’s word for it, because I missed it.  :(  She got her forth tooth last Friday night, and she is also becoming quite the talker.  She surprises me with a 3 or 4 word sentence at least once a week.  This week she was dropping her stuffed animals from her crib after her nap.  Down went her little lamb and she said, “ah oh, wher i go?”  It was very impressive.  I think it was even clear enough that someone else could have heard it.  :)  Maybe. 

Well, Dean and I are going to do a rare thing for us.  We are actually going to watch a movie together. 

Good Night,

Cheris

Good Evening,

We had a very busy weekend here so I wasn’t able to get an update out as soon as I had hoped.  The girls are both doing well.  Sharmi had her first dentist appointment today (we had to reschedule the last one).  She did really well until the end when they were putting the fluoride on.  Then she decided to cry her protest.  The doctor had an interesting exam method.  She had Sharmi sit on my lap facing me with her legs around my waist and then Sharmi laid down with her head on the dentist’s lap for the exam.  It actually worked quite well.

After her dentist appointment we went in for labs to see the results on the chemo increase.  Her ANC was around 2050.  We didn’t see a doctor and so they are not going to adjust the chemo. However, if her numbers don’t drop a little bit I am sure they will increase the drugs again when we go back in two weeks.

Last week at the supper table we had the most interesting conversation with Sharmi.  Unfortunately I can’t remember how it started.  Beginning where I remember she said, “…when Jesus held me…(questions by parents) yeah, where all of the children were…(more questions)… the angels came and carried me to Jesus and there were lots of children there playing…the angles flew down and to took me to Jesus and he held me.”   I was amazed.  She told the story to us as if it really happened.  I can’t help but wonder if it really did somehow.  Maybe a dream, maybe…?  I wish I had the faith of a child again.

And then today when we were laying down for her nap she asked out of the blue, “Mommy when is Jesus going to come so we can go to heaven?”  I wished with my whole heart that I could tell her that he would be here tomorrow.  There is nothing like a sick child to make you long for heaven.

Goodnight, Sweet Dreams,

Cheris

Happy Sabbath,

It is Friday night and we finally have both tired girls in bed.  It has been a long week.  This week Chantel seems to be sick with some unidentifiable bug.  She had a fever on Tuesday afternoon of 102 degrees F.  I gave her Tylenol that evening and it broke, but when she woke up at 4:30 in the morning it was back again.  That fever was gone by mid morning and she hasn’t had one since but I can tell that she still isn’t feeling good.  Last night during supper she threw-up everything that was in her little tummy.  And this afternoon when we were shopping she sat in her car seat dazed and the sales clerk asked if she was always this mellow or if she wasn’t felling well.  On top of that she has a huge infected sore on her bottom and red bumps all over her body which I am hoping is just heat rash.  That was the healthy kid. 

Sharmi has had a high and low week.  The first day after her chemos her skin was very yellow and she had black circles around her eyes.  This evening she was holding her head and complaining of a headache, which is not a common complaint from her at all.  And several times this week she has asked to take a nap.  The poor girl.  When she feels awful her attitude is worse, (like everyone) and my biggest struggle is how to discipline bad behavior with such a sick girl.  She is learning that hard way that life is not fair!  But good news, “egg noddles always makes thing better.”  :)

Other than the sickness I am really enjoying the girls stages right now.  Chantel is cruising around furniture, holding onto walls, and she took her first step between things last night.  She went from holding onto the chair to letting go and stepping over to my knee.  Sharmi’s brillance of the week was this morning, we were doing a sound puzzle of the United States.  She is better than me at knowing where they go, but she only knows about 4 states.  She knows, we live in Washington, Guyah (her former nanny) lives in Michigan, the Bahamas is in the water below Florida, and she says, “California is my favorite.”  However what surprised me today is when we began putting the pieces in she said, “Alaka capital Juneau.”  I don’t even think she knows what a capital is, but she memorized, “Alaska capital Juneau.”  I told her that capitals are the cities in each state that make the rules, like mommy and daddy do.  I am trying to teach her that everyone has rules they have to obey.

Well, I should get to bed because I never know who is going to wake up, for what and for how long.

Goodnight,

Cheris

Good Morning,

The baby is up and so I am trying to get out a quick update before Sharmi wakes up.  Sharmi did not sleep very well because I told her last night that we were going to the hospital again today, and I also told her we were going to the dentist.  She seemed to have bad dreams all night.  I had also put her to bed in her own bed instead of her mickey mouse bed on the floor in our room.  Unfortunately at about 11:00 she fell all the way out of bed.  She fell off of her bed and off of the half pulled out trundle.  She wasn’t sound asleep again until 12:30 AM.

To update you on her limp.  It has gotten better and the lab results from last week did not show any signs of relapse.  I am trying to believe that she is OK,  and I am trying to ignore the urge to think, ” I have heard that before.”  We are grateful that she is feeling better. 

Today we start another series of steroids so it will be a rough week again.  She will also have her first dentist visit.  I personally hate going to the dentist so I was anxious all last night and didn’t fall asleep until 2:00 AM myself. 

Last week Sharmi spent some time at Grandma and Grandpa’s house all by herself.  This was her first night to sleep over at someone else’s house. 

A cute story about Sharmi was that last week I was making capellini pomodoro for dinner and she was helping me chop up the tomatoes with an little hand blender.  That night we were talking to grandma on the phone and she said, ” Grandma I made supper tonight, I made capalini mamadora.”  It was very sweet. 

Chantel is very busy now and she it starting to talk quite a bit.  At Grandma’s house I was trying to put her down for a nap and she kept pointing to a picture of a little girl saying prayer with her dog and kitten. She would point and say, “Kiti, kiti… doow doow.”  She is also showing some strong will, imagine that.  :)  I think she will be able to hold her again against her sister soon.

It is a sunny day in Seattle so we are going to have a great day. 

Love, Cheris and the girls