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