Happy Sabbath,

What a day.  Sharmi is on her nasty weekly methotrexate today, which made a very difficult day.  She did OK until about 1:00 pm.  The oxycodone made her bearable this morning.  I was hoping that the hour and a half of just mommy time doing finger paints would help us get through the afternoon, but it didn’t seem to help.  She couldn’t fall asleep for her nap so after a miserable hour I let her come out of her room and the misery continued.  (She didn’t get a nap yesterday either, which added to it.)

However, this evening was priceless when I tucked her in.  I asked her if she had been good for daddy while she was getting ready for bed.  She told me that she wouldn’t take her chemo when he asked.  I reminded her that she only had to take it 5 more times.  I also told her that in one week we are going to have a party.  I asked if she knew what for.  She got the biggest smile on her face.  She wrapped her arms around my neck and rolled her whole body on top of mine and said, “I won’t have cancer anymore!”  Tears rushed to my eyes and fell down my cheeks.  She laughed and we hugged for while, and then she saw my tears and she asked,  “Mommy, what’s wrong.”  I responded, ”Nothing honey, mommy is just happy.”  She laughed and said, “You don’t look happy, you are crying.”

I was sure she was going to say, “I don’t have to take chemo anymore.”  I was shocked to hear her say  “cancer.”  This is only the second time I have ever heard her say the word “cancer.”  The only other time was a few weeks ago when I specifically asked her if she knew she had cancer, and asked why she didn’t talk about it.  Tonight, after she was FINALLY asleep Dean and I were talking and she had told him, “Daddy, I am going to get my port taken out because I don’t have cancer anymore.”  I am amazed at her little coping mechanisms.  She has never talked about cancer, and in the last couple weeks she has been talking more about her hair as well.  She talks about “my beautiful curls”, and “when I was a baby I didn’t didn’t have any hair becuase I had so much chemo.” 

Thank God she is feeling free to talk about it.  Now, it is time to celebrate.  I just hope I survive the celebrations.  Our Marysville church is doing a special children’s church next Sabbath in honor of Sharmi and we will be having a pot-luck at our house afterwards.  I am also working on food and rentals for the party in San Diego in June.  It will be a crazy 4weeks, but she deserves it. 

Happy Sabbath to you all.  Goodnight.

Cheris

Good Evening,

Today was a fun day.  We went to gymnastics this morning, the girls played in the dirt before their naps, I read books to Chantel and tickled her while Sharmi slept, this afternoon we went shopping and I bought a new skirt for me and animal tanks for growing frogs, and we ended the day going to the Hall’s to catch tad poles.  Sharmi caught a lot of tad poles.  In addition, Emalyn put an egg sack in the tank, so we might have a plague after they all grow into frogs.

Sharmi still loves reading and one of her favorite stories right now is the story of Josephs coat of many colors and the famine in Egypt.   The other day at dinner she surprised me when she said, “I am glad I don’t live in Egypt. ”  I curiously asked her why and she said, “I don’t want to eat JUST corn… I like eating lots of different foods.”   I just laughed. 

I cannot believe how much Sharmi has grown.  We just had her 4th birthday party at my parents house last week.  It was a wonderful time.  She got a new bike that she rode on grandma and grandpa’s patio.  Chantel tried to ride the bike also, but she was happiest if she got sisters cool purple water bottle that goes in the bike.     Sharmi got lots of other great gifts, but she was very generous with Chantel.  She gave Chantel the gift bags that had cloths in them.  She said, “Chantel, you can open these.  They have clothes.  I like clothes, but they are not very fun to play with right now.”  Mom and I laughed at her selective generosity.

Chantel is really fun.  She is talking all the time.  When we drive around town and she spots cows and says, “moo, moo, cow…. moo cow.”  She loves her play ground in the back yard.  Whenever a door gets left open or she gets out of the car she runs for the swings.  I am really glad she enjoys outside so much.  I just wish it didn’t increase the number of baths and the amount of laundry. 

I can’t believe that there is only 9 more doses of Mercaptopurine and 2 more doses of Methatrexate to go.  Two years ago it didn’t feel like we could survive this.  But today was a great day.  It was not one of just surviving, it was one of REALLY LIVING!   The first two years of Sharmi’s life was consumed by rebuilding our house and life from the flood.  That last two years have been spent fiighting cancer.  I pray that the next two years will be really living!  (I am already sad about her going to school someday.) 

I hope our lives can remind you to “really live”,  it makes such a difference. Good night.

Cheris

Good Morning,

It doesn’t seem real to me that we are coming to an end of the drug phase.  Last Tuesday was her final vincristine in her heart and Sunday morning I gave her the last dose of steroids.  Thank God, no more cranky, crying, whiny, starving, sleepless, itchy, fragile steroid weeks.  I am really looking forward to finding out what life and Sharmi will be like without a ton of drugs constantly running through her little body.  I was talking with some friends the other day about how Sharmi will feel and how much it will change her behavior and personality.   Sharmi frequently says,  “I don’t feel good.”  She of-course says this when she doesn’t feel good.  She also says this when she doesn’t want to get in trouble, and to try to get her way.  However, I was thinking the other day that even when she has said, “I don’t feel good,” to get out of something, she is always telling the truth.  She has “not felt good” for over two years from chemo and treatment, and only God knows how long she had cancer before that.  Her symptoms and her limp started in  October of 2006, when she was 18 months old.  I was looking at old pictures of her last night and I could see in her hallow eyes and yellow skin that she was sick.  I remember being concerned about it when we were in Palms Springs on vacation with my parents.  We knew she was sick, but it still took 5 months to convince the doctors.  I was reminded how small and young Sharmi was when this all began.  Chantel was wearing the same outfit yesterday as Sharmi was in the pictures when she started limping.  It breaks my heart remembering that such a little girl had to suffer and go through so much.  She has “not felt good” one single day since before she was 18 months old, and she has done it with more grace, love, and courage than any adult would.  She is my Hero!  I am very proud of her.    I am looking forward to all of the happy times that we will have with two, happy healthy girls that “feel good.” 

Last Tuesdays appointment day was long, but it was overall very nice to just hang out with Sharmi.  Trina watched Chantel all day so it was just Sharmi and Mommy time.  Sharmi had her labs, doctors appointment, and chemo in the morning, and then we had to wait around for her EKG and Eco of her heart in the afternoon.  We colored in her coloring book  a lot, we had a lovely lunch together at the hospital and we browsed around the gift shop.  Every time we go to the gift shop she picks up a little resin beagle puppy dog and she holds it and says, “It’s OK, mommy’s got you.  You will be OK…. Just go to sleep.”  She holds him so gently and pats him.  She begged me to buy him.  I told her ”no”, but  I was able to buy it without her noticing and I will give it to her after her port removal surgery.  It will give her something to take care of instead of worrying about herself.  She loves taking care of everyone.

Chantel has even learned the art of healing.  She found Sharmi’s doctors set on the floor last week and she patted the floor and told me, “down down.”  I laid down on the floor and she cleaned me, checked my ears, listened to my heart,  and pounded on my knees to check my reflexes.  She has it all figured out.  Another thing that she figured out is that “pawie  pawie” (potty potty) will delay bedtime.  She thinks it is a great time to read books or play ball (the ball trick was learned at grandma’s house this week).  Her potty trick does work, because she has been successfully potty training herself the last couple of weeks and has gone potty many times when she has asked.  The games and the learning of kids are priceless.

Well, I better get going.  We have been at my parents house this weekend and we are headed home today.  We stayed an extra day so the we could do pottery painting yesterday.  Sharmi painted a plate with her hand print and she put bug stamps on it.  I did a plate of Chantels hand and foot print.  And Chantel painted a little kitty.  She loved it.  She painted it, patted it, and loved it.  When I turned it over to paint the back of it Chantel put her finger to her mouth and said, “shhh…seeeping”  It was priceless. 

Love to you all,

Cheris

Hello, I am sitting in the sun on the front patio thinking about how grateful I am that last week is over.

Just when I thought we were on the home stretch we all got sick again.  Dean came home last week with a cold and even though we tried to isolate him and give him time for lots of rest, both of the girls came down with colds on Sunday night.  It hit them hard and fast.  For Sharmi, it took two full doses of Benadryl before she was able to breath enough to finally go to sleep that night.  They gradually got sicker and sicker.  On Tuesday Sharmi had a fever over 101, so off to the hospital we went.  Dean was out of town again so Trina and Carl came over to help me get packed (just in-case we got admitted).  And Trina helped me gather a few things that Chantel would need to stay the night with her.  I am really grateful for Trina’s relationship with Chantel.  She is a mommy’s girl, but she was “as happy as a clam” to be leaving with Trina.  It made my heart a little lighter knowing that Chantel was not stressed by being away from me.  Trina said that Chantel had a great time and loved waking up and playing with Ethan and Emalyn in the morning.

Carl drove Sharmi and I down to the ER.  It was really wonderful to not have to worry about driving.  Hospital trips always take so much out of me.  It is also always helpful having another person at the hospital with us.  Sharmi did great when they accessed her port.  I was talking with the doctor, Carl was holding Sharmi and I looked over and it was done.  She didn’t even whimper.  This was a back to her old self. 

We had tons of doctors looking her over and they did a list of tests.   Her ANC was over 5000 which meant that her immunity was high enough to fight off the cold by itself so they sent us home.  We didn’t get home until close to mid-night and Sharmi was still wide awake and hungry when we got home.  The next day her fever kept jumping around and I couldn’t tell if we were going to have to go back again or not, but it stabilized by evening.   

Wednesday night Sharmi’s fever was better, but both of their colds and clinginess was not getting better.  The exhaustion of being a single parent the last two weeks was getting too me.  I tried to have some quiet time to prevent a looming meltdown, however, the girls would not hear of giving me a break.  They crawled on me, jumped on me, tried to take my temperature, and Sharmi even read stories to me, while sitting on top of my personal space.  This did not help with my sanity at all!  I laid there crying wishing I was a turtle.

My parents felt my exhaustion and they came for the weekend to help give me a break.  This was a good thing, because I got sick Friday night as well.  Mom gave the girls hot foot baths too help their colds and even though we were all sick we found time to enjoy the girls.  Friday night I heard Sharmi walk into the bedroom with her Daddy after giving hugs to everyone and she said, “Wow, what a busy evening!”   She is so grown up.  Chantel is jabbering away.  She loves to run.  She begs “ru ru” and she wants to be picked up and to run around the house chasing sister.  She has also taken swinging to a new level.  Grandma and papa pushed her from both sides for almost an hour Friday.  She would ask, “highe highe”.  Her sister also also taught her the love of a blanket,  Chantel calls it “bink, bink.”  She carries it around and she won’t sleep without it.  She adds new words to her vocabulary every day.

This evening everyone appears to be on the mend, but I am sure it will take a few days yet until we are well.  I pray that Sharmi gets full health quickly because she goes in for her LAST HOSPITAL DOSE OF CHEMO on Tuesday.  Thank you Lord!!!   This also begins the last series of steroids.  I can’t believe the drugs are really coming to end.  What a long journey.  I understand why Sharmi can’t comprehend life ever being different.  I even have a hard time believing it will be different it has been more than half of her life. 

Well, I am worn out.  Good-night to you all.  I hope all of you had a wonderful weekend. 

Love, Cheris

You would think that with all of the doctors visits, pokes, procedures and drugs this girl has had she wouldn’t be worried about a simple dentist visit.   But this morning Sharmi woke up at 5:00 in the morning and said, “Mommy do I have to go to the dentist today?’  I responded yes, and she whimpered, “I don’t want to go to the dentist. I am NOT going to go!”  Despite my desperate pleadings she never went back to sleep. 

The morning went really rough, with everyone being really tired and trying to rush to get ready.  The worst incident was that Sharmi closed her sisters hand in the closet door leaving a big crease mark across her hand.  This added to the drama.  However, when we finally got to the dentist Sharmi did great.  She reverted to her quiet concerned persona but she did great.  Once we left the office my sweet little girl returned.  As we were driving home she asked to stop and pick the flowers (dandelions) beside the road.  I pulled over, let her out of the car, and I soaked in the priceless memory.  She went from one clump to another, singing and talking while pulling one yellow flower after another.  She also found a few puff balls to blow.  I overheard her say to herself, ” I love picking flowers, it makes me so happy!”  I was so grateful that I didn’t keep driving and say something stupid like,”they are just dandelions we have some in our grass.”  I would have missed out on the pleasure of holding a bouquet of flowers that got so large that my hand couldn’t even hold all of them.  I put them in water and she is so excited to share her joy and show them to daddy when he comes home tomorrow.  Today had many stressful moments but I did experience the value of “stopping and smelling the dandelions.”

Goodnight

Cheris

Hello,

The steroids have worn off and we are having a great week.  We have had several days of sun and we have spent every possible sunny minute outside.  The girls have played on the swings, gone down the slides, dug in the gravel, pulled weeds, helped me search for thistles in the grass and we even had a picnic in the back yard.  It has been wonderful!  It definitely makes me miss sunny San Deigo.  I am so excited about our trip in two months.  Sharmi is excited too.  We drew pictures on her calendar today so that she has something to look forward to and so that she has some concept of time.

Health wise the three of us have been fighting off colds this week, but are feeling pretty good right now.  We are looking forward to decorating and hunting for Easter eggs this weekend.  I hope the sun still shines for us through the weekend.   

Happy Easter to all of you.

Cheris

Good Evening,

Last week was wonderful.  Sharmi was feeling great and happy.  It was such a joy.  She was so polite to mommy and so thoughtful of her sister.  She even walked into sisters room when I was in there and she said, ”this room is a mess.  I need to clean this up.”  When I was starting to leave she said, “mommy, sisters room isn’t clean yet, I need to finish her room first.”  She is turning into such a big girl.

This week on the other had is another steroid week and it has been a rough one.  Monday Sharmi had her monthly doctors appointment.  It felt like we had gone back almost two years.  She had a complete meltdown when we tried to access her.  She is usually so brave that she doesn’t even make a peep.  However, when she has had a hard time in the past, I tell the nurse to give her a minute and I will tell Sharmi that she is in control. I will emphasis that we need to do it but she can tell us when she is ready.  It usually only takes her a few seconds and she calms down and is ready.  This week she just got more and more hysterical.  I finally had to take her shirt off so that it wouldn’t recontaminate the access site.  I had to grab her arms and wrap my arms around her and hold her with all of my strength so that they wouldn’t miss the port and have to do it again.  Once she was access she calmed down, but she was distressed the entire day.  It was a good thing that my mom was there with us to help with Chantel.  I could not have done it without help.  

I think Sharmi is afraid of the unknown.  We talked in great detail about the “end of treatment” and her port coming out, at bedtime last Sabbath.  She was very disturbed.  She said she wants to have her port forever.  I tried to get her excited and told her about all of the parties she is going to get to have, the first one being at church on May 23rd here in Marysville and the second being in San Diego.  She did like looking at the calendar.  I have mentioned before that she never talks about having cancer.  She knows all of her drug names.  She discusses the hospital processes and treatment but she won’t talk about cancer.  So I asked her, ”Honey do you know you have had cancer.”  She responded, ”Yes I know.”  I stated, ”well, you have never talked about it.”  She replied, ”I know mommy, it don’t talk about it because it is boring. I talk about a lot of other things, but I don’t talk about it because it is boring.”  I thought this was interesting because she doesn’t really use the word “boring” very much,  and even with direct dialog she still would not say the word, “cancer.”  I am grateful that God gives even the smallest children coping mechanisms.  This isolated silence must be hers.

Sharmi has had a rough couple of day and has pretty much watched TV non-stop.  She finally started feeling better tonight around 6:00 pm, but I am sure that will change overnight since she got her weeking methotrexate along with her steroids and her daily chemo tonight.   However, we did have one cute moment on a not so cute topic tonight.  Constipation is one of the side effects of chemo that we have to deal with and I have been trying to get Sharmi to go potty.  She sometimes intentionally chooses not to because it frequently hurts after vincristine.  So we were having a debate over a topic that you can’t force a child to do.  I was trying to use higher reasoning and it didn’t work.  About 20 minutes after my attempt to to talk her into it, she decided she needed to go.  After she was successful she gave me a long explanation of the process and she said, “See mommy, I am smart too!”  I busted up laughing.  Sometime I have to tell her that her mommy is a smart person and she knows what she is talking about.  Tonight she felt like it was her turn to state her inteligence and demand the respect for her knowledge.  It was priceless!

Chantel is turning into a monkey,  she climbs up on everything she can includeing chairs, couches, stools and her hassock and then she jumps or falls off.  She doesn’t care anymore if I am there to catch her or not.  She climbs, jumps crashes, laughs and does it again.  Another new thing is to hide things.  Sunday she put about ten pieces of her sisters chalk in the crack of Sharmi’s trundle bed.  After she did it she grabbed me and pointed and said, ”hide, hide.”   I put my hand in the crack and discovered little colored pieces of chalk.  She was so pleased.  I thought I had got it all, but she pointed to the foot of the bed and said, “hide, hide,” but I couldn’t find anything.  It wasn’t until later that night when I was putting on new sheets for Sharmi that two more pieces of chalk fell out.  It made me smile. 

Well, tomorrow will be another long day of crankiness so I need some sleep.

Goodnight to you all.

Cheris

This has been a good week.  Life has been calm.  It makes me wonder what it will be like in two months when her chemo is all over.  I would like to think that all of her bad behavior is caused by the drugs and that she will be the perfect child when this is all done, but I am afraid that won’t be the case.   

The other day I found Sharmi sitting in her room reading stories to a wood carved bear.  She had a pile of books.  She said that she was putting him down for a nap.  A couple hours later when we returned for Sharmis nap, there was the big wooden bear tucked under her satin sheets.  He had a good nap. 

Chantel melted my heart the other night when I tucked her in. After I laid her down in her bed, she peaked through the slats and said, “night  nigh… night nigh…. slee(p) tie.  These moments make all the craziness of the day melt away. 

Love to you all.

Cheris