Good Evening,

I hope all of you had a great weekend. We had a very nice time with our friends. It was wonderful for Sharmi to have the distraction and she loved playing with Jennifer and Logan. She did really well on Saturday and was happy and full of life. The highlight of the day is what she calls “daddy’s motorcycle.” Dean has a riding lawnmower that he hooks up a trailer to. He took the kids and Julie for a ride around the neighborhood and then they ended up at the park. John and I walked down to meet them and we enjoyed the gift of watching our children laugh and play. (To make the walk more exciting I began having contractions again. They have been visiting off and on for the last week and a half. We are hoping and praying that sister doesn’t decide to visit us early as well. All seems calm right now.)

Yesterday was a harder day. Sharmi didn’t sleep well, she woke up fussy and I could clearly see in her eyes from the moment that she woke up that she was not feeling well. It seems that the chemo had finally hit her. She also gave us a scare when daddy was helping her go potty. We discovered a significant amount of blood. I called the doctor and they gave several scenarios of “if, then” which all required taking her to the hospital, except if there is no sign of blood again at all. We of course have been praying and she appears to be fine.

We got her a big girl bed with the hopes that we can get her to sleep in her own bed again. She was very excited about it yesterday when her Daddy and John set it up. We have played on it, we read books on it, we had worship on it last night and she took her first nap on it today. I think it was an accident. She fell asleep on my lap when I was on the phone. (This was amazing in itself since she never just falls asleep.) Unfortunately her nap wasn’t very long, but she seemed happy enough to wake up in her new bed.

We go in again this Wednesday for another dose of chemo. Continue to keep her in your prayers. I am convinced that prayers are helping, but it is still hard to watch her go through this. The side effects are sometimes the biggest indicators of how hard these drugs are on her. For those of you that haven’t seen her in awhile. She has lost virtually all of her original hair, but she has had regrowth in some spots of about an inch. In these last few days I have noticed that that new growth is beginning to fall out as well. I have been told to expect this, but it is still a hard reminder about what her poor body is going through. We thank you for your prayers.

I hope all is well with you and your family. Have a good evening.

Cheris

Good-morning loved ones,

Sharmalia appears to be doing really well (except she is still in bed at 9:15 am and she is usually an early riser.  I am just hoping that she is adjusting for her irresponsible parents who kept her up so late.) 

After last weeks treatments I did notice that she was experiencing some side effects in her walking.  The vincristine causes “foot drop”  which means that her ankles drop and she can’t walk heal to toe.  So, for about three days she walked on her toes.  She had another dose of vincristine (and doxorubicin) this past Wednesday so we will watch to see if it effects her worse this time or not.  If she has significant worsening they will decrease her doses at next weeks visits.  Even though we don’t want to see any side effects we are thankful for a little foot drop in contrast to the paralysis that she experienced in induction. 

We are overall very pleased with the care that we are receiving here.  The flow is much harder on her and me, because we have to move from lobby to lab, back to lobby, to vitals, to doctors room, to infusion, to procedure room, and then they kick you out of recovery and you have to find a place to feed your kid, since they were fasting for hours.  All of this moving around is especially difficult when mom is 8 months pregnant.  :)  San Diego was set up so that you went into one big room, picked your bed for the day and everyone came to you except for the doctor.  That being said I would rather have good quality care instead of convenience. 

The providers here seem to be empowered to make decisions based on the child’s health, response to medications and comfort.  They have made adjustments to her dosages and her schedules several times. They have adjusted for things as critical as her low immunity and things as “minor” as moving her procedure chemo back so that she can get her shots while under anesthesia to avoid the pain and stress of it.  (We asked for this at San Diego when Sharmi had a port correction surgery scheduled the day they gave the shots and they would not do it.  Seattle Children’s makes this adjustment for all of their children as a standard practice.)

Sharmi is one brave kid.  She still has her times when she cries an says, “no doctors,” but she is a trooper.  When we went to the infusion clinic on Wednesday, the nurse walked away and Sharmi said, “where did she go? where are medicines.”  Then she told me that the medicines were for the “baby’s port.”  When the nurse returned with her chemo, Sharmi pulled her tube out from under her shirt and handed it to them.  I was telling Dean this story last night and Sharmi filled in the pieces that I had missed such as when she asked “mommy do it, mommy give medicines.”  And they responded, “no mommy can’t do it.  mommy hold baby so not scared.”  She is quite the talker and she understands and remembers everything!  I know I am biased but I think she is pretty incredible.

Well I started this at 9:15 and now it is 4:30.  I still haven’t taken a shower, I have grocery shopping to do once the baby wakes up and we have our dear friends the Plake’s coming for the weekend.  I better run.  Now that I finally have inter-net again I will try to do more frequent updates.  Have a wonderful weekend and a happy Sabbath.

 Love Cheris

Hi Everyone,

What a week! It has been a roller-coaster as you could probably tell from my last update, but we have ended the week well. Sharmi is 5 days into her intensified dose of steroids. So far she is not overly ravenous for food, but we are lucky that her grandparents had bought a commercial sized box of stripples.  She eats them constantly.

Yesterday she went back into the hospital for her second day of chemo for the week (usually she just gets it once a week.) She had shot of PEG which she hasn’t had since her first week of treatment in March. You may remember that this drug has possible serious neurological side effects including comma. Thank God she seems to be doing fine with it. She was actually pretty dopey yesterday all morning while we were waiting for the treatment. Unfortunately what should have been a quick 2 hour day at the hospital turned into 6 hours. She was fasting which made it even harder when they ran almost 2 hours late.

The drugs have been taking life out of her everyday this week, but last night was wonderful. In the evening when her daddy came home she seemed to snap back. She was laughing, playing, singing and running around. We finally got her to fall asleep around 10:00.

She also had a good day today. She is certainly more tired and needy, but her daddy spent a lot of time with her today and it made for happy times. This also gave mommy time to do dishes. I am embarrassed to say that they pile up. I miss all of you in San Diego who would come by and say, “I have got an extra hour or two how can I help.” It is beautiful up here if anyone wants to come and visit.
Sharmi and Daddy read, “took naps” on the bedroom floor (no actually rest occurred) and they danced around the house. She did this funny “chicken type dance” thing around the house. We think she picked it up from church. This was vacation bible school week at the church so the kids did the program. It just dawned on me that one of the songs had the conga in it. I think this must be what she was trying to do. Of course it was adorable and it was great to see her happy.

It is beautiful up here and we are meeting lovely people, but we do miss our friends in San Diego. Thursday, Sharmi woke up when I drove up to the house and she started crying, “Go home.” I told her that we were home and she cried, “no new home, go home.” She also pleaded with her daddy that night to “go home.” It breaks our heart, but overall we feel that she is doing well with all of the changes.

We appreciate your continued prayers.  We love and miss you all.

Cheris

Hi Everyone,

We still don’t have internet at the house, but I have discovered that I can use Dean’s work computer.  Sharmi has been doing really well these last few days.  She has been on a standard break from drugs for 5 days to give her time to build up her strength before they pound her with drugs again.  She has been such a joy.  Last week it felt like we were dealing with a horrible case of the terrible two’s on chemo.  These last several days she has been happy, talking, singing, and she has even been playing contentedly on her own.  This is very different from our first several weeks here when I couldn’t put her down all day long.  I carried or held her all day.  I was only able to put her down on the kitchen counter for a few minutes to use a knife or get her some food.  

The fact that she is doing so well makes it even harder to face tomorrow. Tonight has been a really hard night for me thinking about what the morning has in store for my precious baby. This next phase is an 8 week phase, which has two weeks of break built into the end of it because it makes the children so sick. She is getting three new drugs in this phase in addition to what she has been receiving the last four months. Tomorrow she gets Doxorubicin which has a “likely side effect” of “heart muscle damage” and a rare side effect of “severe heart failure”.  (After her partial paralysis which was rare, it is hard to ignore those possibilities)  She is only two… she doesn’t deserve to be going through this!

I wish above anything that I could take her place. Last week we were sitting at the kitchen table eating and I gave her two different doses of chemo and within 30 minutes I watched my little girl go from happy and bubbly to sad and frustrated. I could see it in her eyes. Where just a few minutes before they had been playful and they sparkled, after those drugs hit her system they turned dark and glossy.

We need prayers. I can’t bear the thought of doing this to her for over two more years.

On a brighter note, I am so grateful that she seems to understand the love of God and the angels. The other day on the way to the hospital she had started to cry. I asked her if she was scared and she responded, ” yes, mommy pray.” So I of course prayed as tears fell down my cheeks.  She frequently goes off on her own, closes a bathroom door and prays. Some of it I understand and other words I don’t. I wonder what those thoughts are that she hasn’t learned to express yet?  I think they are deeper than we can imagine.  Last week she prayed a prayer that broke my heart.  She was in her bathroom gabbering away and I heard her start praying.  She prayed for Grandma, papa, nana and daddy and then she prayed for me.  She prayed, “please take care of mommy, please take care of mommy, mommy pain, please take care of mommy…”  She pleaded her prayer for me at least 7 or 8 times and every time she said is she was more desperate.  By the end of her petitions she was almost in tears.  I am continually amazed at how concerned she is over me.  She has taken it upon herself to take care of me.  :)  I have had a lot of pain in my back and legs with this preganacy and she frequently offers me her hand to help me out of bed or help me get up off the floor.  I know it is my job to love her and take care of her through this time, but some days it seems like God gave me her to help me through it. 

Please keep us all in your prayers we are all carrying a lot of responsibility right now on very little sleep. Dean is not only dealing with work and trying to help take care of his family, but he is also dealing with the old house and the new house and all of the repairs, bills and leagal documents that come along with them. As most of you know Sharmi and I have both been in the hospital this year already, I just pray that Dean will stay healthy.

We love you and miss you and we thank you for your continued support.

Cheris

hi there! i’ve been pretty sick for a while, but i am feeling better now. my immunity is still down, although i’m up to 788 (from 360, but it should be between 1500 and 5000). last week i got chemo in my spine, a push to my heart, but not orally at the doctors. at home i’m down to 50% of the regular dosage because of my blood counts. that will last for a week from last wednesday. i’m still on (full strength) steriods with my last dose today. i have been eating stripples all day and all night–that’s all i really want to eat.
we’re going to the doctor again today to check my blood counts again to make sure they’re still going up, to get an EKG, and an echocardiogram. i always thought those tests were for old people but they say the medicine they’re going to give me during phase 4 will be new medicine and that it has been known to cause heart damage–which is kinda scary for all of us. so they check my heart before they start the medicine to see how it is now.
i was growing my hair back some, about 3/4″ mommy says, but i guess i’ll have to keep working on it since the phase 4 medicine will probably make it fall out again. oh well, i’m still cute without my hair!
mommy and daddy finally got the house in california sold–so they’re very happy about that!
we have a king-size bed out on the back deck. i love to go out there and hang out sitting on the bed. we eat out there, watch nature, read books and talk. it’s really pretty up here.
sometimes i’m not sure who is in washington and who is in california, so it’s kinda hard to know who i will see again soon, and who i won’t. mommy and daddy say aunt “melissa” and “uncle” rick are going to be here soon…that will be lots of fun i like to play with them. welll, actually i like to play with a lot of you
well, we’re almost to the doctor’s now (mommy doesn’t know i have her pda and am writing this right now!). bye bye!