When you have little ones it seems like you are always fighting to create normalcy and a consistent schedule.  The time change was really hard for us. I got very little sleep that week because Chantel kept trying to get up between 4:30 am and 5:30 am.  I of course wasn’t getting to bed any earlier either.  We have finally adjusted to the time change and now Chantel has decided that she only needs one nap a day.  I don’t want to agree with her, but after she fusses in her crib for anhour in the afternoon, I finally give in.  The great news with Sharmi is that, with the break from steroids, I have been able to get  her to take naps and go to bed consistentlyall by herself.  She of course does the delay tactics of potty, water, tuck me in, I need a hug and a kiss, but she is doing really well.  At nap time today she grabbed my hand and held on as tight as she could and said, “you can go, but your hand is staying.”  After my hand tickled her tummy she finally let go. 

Sharmi is doing really well with her letters.  We were reading a little animal farm flap book this morning, and when she opened the flap she would say “A COW” “A ROOSTER..”and then she would say each letter.  I was impressed.  I had not specifically taught her letters with those books.  I asked her how she knew how to do that and she said, “I am a little smarty pants.”  Apparently I have told her that too much.  :) 

Chantel is also learning how to get what she wants.  Last week I was doing the dishes and she walked over to the dishwasher and took out a spoon.  Then she toddled off to a little table in the kitchen nook where I keep extra bowls.  She returned to me with the bowl and spoon and proceeded to push the dishwasher drawer in (which she hadn’t done before) and then tried to push up the door to close it.  After I assisted her with the door she took my hand and lead me to the refrigerator.  I think she was telling me that she was hungry. 

Despite the girls doing great I am in a weird funk.  I don’t even know why, so am using a little Christmas music to lift my spirits.  Two kids wiggling on my lap while I am typing with one hand isn’t helping my sanity either!  I am hoping to go to bed early tonight, because everything is better with a little sleep.

Happy Monday.

Cheris

We are doing really good here right now.  We had a wonderful weekend as a family and my parents watched the kids on Saturday so we could get away for a few hours. 

Sharmi’s appointment last Tuesday went well.  Her counts were back down to 1200.  This is OK, but they elected to start her back slowly on her drugs.  They canceled the steroids for this month and the weekly methotrexate for last week again.  So Sharmi was only on mercaptopurine last week.  Sharmi has had a lot less drugs in her system these last couple weeks and it is evident in her behavior.  This morning she played quietly by HERSELF reading books, magnetic dress-up dolls, tucked her dollies to bed on mommies pillow, and built log houses.  It has been so peaceful and enjoyable. 

Chantel is at a wonderful age.  She is really starting to communicate well with words and sign.  The signs she used this morning include banana, pain (Sharmi accidentally hit her in the head with a bottle during her bath), bath, more, and sleep .  When the girls were at the park on Saturday with Grandma and Grandpa I was talking to Chantel on the phone.  I thought it was Sharmi because when I asked her if she was having fun she said, “yeah” and when I told her good-bye and I loved her she said “bye.”  I was shocked when mom today me that it still Chantel.  I understand what she is saying at home, but it is generally harder over the phone. It is so fun to watch her grow, develop and copy big sister, except for the temper tantrums.  :)   

Well, they have both awakened from their naps and I promised I would take them outside today.  It is cold, but not rainy so we have to take advantage of it.

Cheris

We had a great one because we are finally home.  Sharmi was discharged yesterday afternoon.  Thursday was the turning point.  In the morning when I got there I looked at her infection and it was significantly worse then it was the night before.  I told friends and family that by the progress of the infection it looked like we would be there through the weekend.  But I am thankful that God was hearing our prayers and had a plan.  That morning my mom was walking through her grocery store and a 20 inch aloe vera leaf “jumped out” at her, and so she bought it thinking that it would help Sharmi.  Then my mom’s music lessons kept canceling resulting in it opening up enough time for her to come over to the hospital.  She felt like God was telling her that Sharmi needed the aloe that night.  Around 8:00 pm, when visiting hours were over, the room started filling up with people who loved her.  First mom with aloe, then Carl and Trina and Chantel with red algae capsule and toys, and then my dad.  It was a party!  

Thursday afternoon I started to see a slight improvement in her skin, it looked a little less raw.  But the real improvement started when we rubbed the first aloe on it.  It was amazing.  It began to heal so fast that you could almost see it change.  Within an hour the red infection was much better and the surrounding skin looked pink and healthy like it was bringing in blood to help heal.  We also gave Sharmi a dose of red algae which Carls family uses for shingles.  It took us two attempts to find the right carrier for the stuff, but we finally got it down.  By the time everyone left two hours later I was very optimistic that we were going to go home the next day.

At rounds, after looking at Sharmi’s improvement, the attending doctor gave us the option of staying one more day or going home.  She was leaning toward us staying because she stated that she had seen a lot of zoster (herpes zoster aka varicella or shingles), but not like hers.  She said that Sharmi’s was a very bad and aggressive case with so much fast growth even on the antifungal medication.  She warned me that if it got worse at all we were back in the hospital for at-least 3 more days.  I felt like God had given us the plan of care for her so I decided to bring her home.  We have continued to use the aloe and give her the red algae in addition to the oral anti-fungal medication.  Today her infection is almost gone on her arm.  Her hand still has some big sores but I am confident that they will heal soon. 

Today was a day to just spend some time at home healing and resting with the girls.  Shami has bounced back so quickly.  You would never know that she was in the hospital 4 days last week and that she has been fighting off infections for 6 weeks now.  She is amazing.  I am so gratefull that God made her a tough fighter (most of the time :) 

Chantel had a great time being a big girl and experiencing the world while we were in the hospital.  Her verbal and sign language communication has really taken off in the last couple to weeks.  It is so fun to watch her blossom. 

Good night to you all.  Thank you for all of your thoughts and prayers.

Cheris

I had to come home again tonight without my big girl.  When I got to the hospital this morning Sharmi’s Shingles outbreak was about 50% worse than when I left last night.  The doctors had already decided that she was staying for at least another day.  They are giving her high doses of anti-viral medication.  The medication has a high risk of causing kidney failure so she has to be on a high volume of IV fluids.  This of course made her get up every hour to go pee resulting in a very bad nights sleep.  They will not be able to send her home until the shingles are under control enough that she can go on a low oral dose of the medication without the risk of kidney failure. 

This afternoon we drew an outline around several of her outbreak patches with a Sharpie marker.  This will help give us a clear indicator as to weather she is getting worse or getting better. 

Sharmi seems to be fairly comfortable.  She has a very high tolerance to pain and so she isn’t complaining much, but she did keep complaining about being tired and she kept asking me to take her home.  I am hoping that I will be able to do that tomorrow.  Please keep praying.

Good night.

Cheris

Another long day for Sharmi and the Curry family.  Today was supposed to be a standard doctors appointment with labs and chemo, but our plans were quickly changed when we saw Sharmi’s doctor.  Apparently the herpes virusus’ are having a family reunion in Sharmi’s little body.   First she had the mouth sores for a several weeks and today Sharmi woke up with small little blisters all over her left hand and up her arm.  She has been complaining of her fingers and hand hurting off and on for the last week.  Two nights ago she woke up 4 hours into an 8 hour codeine complaining “mommy my fingers hurt… on the inside… it is tight when I move them.”   Last night she laid quiet and still all night but she barely slept.  Every time I would try to get up and go into my bed to try to decrease the back pain, she would say, ” mommy, where are you going… mommy, come back… mommy, sleep with me.”  Last night, when she went to bed, she didn’t have a spot, but when she woke up her arm and hand were covered.  So initially today when we showed Dr. Thompson her hand she said to not worry because it was just hand, foot and mouth disease.  Then when I showed her her arm and asked why it would be on her arm she said, “That is not hand, foot and mouth disease that is a varicella virus, shingles, that hurts!”  She informed us that shingles could be very dangerous to her because her immunity is so low.  It could spread all over her externally and she also listed a bunch of internal organs including the lungs (the rest of the details has gone fuzzy) that it could attack.  So in order to monitor and treat her they admitted her to the hospital today. 

Sharmi cried when I told her that she had to stay in the hospital and she was very quiet and tired most of the day.  She was so tried that she said several times, “mommy can you turn the TV off I just want to lydown and sleep a long time.”  Now for Sharmi that is tired!  She also didn’t want to eat because she wanted to sleep.  All-in-all I think her spirits are OK and when I left, the spots didn’t appear to be spreading so we might be able to bring her home tomorrow.   

I stayed with her until about 7:00pm when Dean got there.  Then I left to pick up Chantel from my friend Trina’s.  Trina was a life saver today.  She went with me to the hospital and helped with Chantel, got us lunch, drove to Fry’s to pick up a gift for my parents that had to be picked up, took Chantel to her house until I could get there, feed me, and then Carl drove me home.  It was a tremendous help and relief.  I thank God for them. 

So please remember Sharmi in your prayers that she will heal and also pray that Chantel doesn’t get the chicken pox from her virus. 

Good night,

Cheris

We had an absolute blast on our vacation.  Our friends the Hall’s flew in on Tuesday and the rest of the week we went to the Zoo, Sea World, Wild Animal Park, church and the beach.  We soaked up the sun and the kids loved the animals.  Sabbath we went to church and Pastor Jason and Kris sang “The Big Red Bus” for Sharmi.  She talked about it all the way to church and she loves to sing and dance, but for some reason she got shy when we sang.  However, she has told everyone about it since.  She loved it! 

Saturday evening, for many reasons, we didn’t get to the beach until it was dark, but the kids still ran and played in the waves.  I laughed remembering all of the times that I called people “crazy tourists” for playing in the water when it was cold  :)  The trip was an absolute blast.  We enjoyed the laughter and company of our friends and they were also a tremendous help with the kids.  

Monday was laundry day.  I did 8 loads of laundry and I still have one big load to do.  We create a lot of laundry in this family, because we try to keep things fresh.  For example Sharmi doesn’t sleep in covers so we double layer her at night.  We put leggings, a long sleeve shirt and socks on the bottom and then we cover them with footie pj’s.  And since I don’t want her in sweaty chemo pj’s she gets fresh cloths every night.  This makes lots of laundry. 

Today Trina watched Chantel and I took Sharmi to the hospital.  She had a physical therapy appointment first and then we saw the doctor for her sore mouth.  PT went well.  I think Sharmi was a little nervous about it though because she wouldn’t do what the therapist asked her to do when she was testing her strength.  Sharmi wasn’t complaining or fussing, but she just wouldn’t push back when the therapist was using resistance to determine any weakness.  With a change of tactics and some jumping and balancing the therapist was able to determine that she still had good strength.  We we sent home with some exercises to strengthen her legs and stretch her heel.  The exercises are also known as “bear walk, crab walk, lame dog walk, duck walk” etc.  She really enjoyed them so I think it will be easy to get her to do them.  My plan is to be the umpire for Sharmi and Dean to do animal races down the hall. 

After PT we went to the hem/oc clinic and saw a doctor regarding her mouth.  We had never seen this doctor before and I really liked him.  He was able to see one of the white spots in her mouth that was causing her pain.  She complained a lot on vacation and I was able to see a lot of little spots.   Now she is much better, but today when we brushed her teeth her mouth bled so I decided I should take her in. The doctor said that it is a virus.  His first thought is herpes since it is everywhere and is so easy to get.  He said that the virus usually runs about two weeks but considering Sharmi’s immunity and the cold she had a couple of weeks ago that she has probably been sick for 4 weeks.  This corresponds with her lack of appetite for the last four weeks.  She generally felt bad and acidic or hard foods have hurt her mouth, thus overruling her feelings of hunger.  She is on the mend and should be better by next weeks appointment.  In 5 weeks we will do a culture to see if we can identify the virus by the antibodies in her system. 

At the end of our visit I was reminded about how much she takes into her little head.  The med student that had talked to us first had mentioned that the doctor may want to do a finger stick to draw labs.  I told her that I would not do this because Sharmi was not used to it.  I told her that if they needed labs we would access her.  After the visit was over and the doctor and med student left, Sharmi said with a worried face, “Mommy they forgot to give me a shot in my finger.”  No wonder she looked so solemn while he was examining her.  It breaks my heart to think about how much she must worry inside.

Chantel had a pretty good day today, because she was able to get both of her naps in.  She did miss me though.  Trina said she would sporadically wander around the house to look for me and when she couldn’t find me she would just sit down and cry.  Then she would play for a little while and go and hunt for me again.  In the long run it was better for everyone though, she got her naps, Sharmi got more of my attention and I didn’t have two kids to juggle.  I am very grateful for Trina’s help today. 

Everyone loved San Diego and all of the animals, but Chantel had a new appreciation for all of the animals this trip.  She loved watching all of them.  She would point and chatter.  I was really impressed at the zoo when we were walking up the hill to see the Panda’s and she pointed at the painting on the all and she said as plain as day, “panda, panda.”   I had not pointed them out to her at all.  She was able to identify the picture all on her own.  She said a few other animals names including duck, deer, bird…  On Friday when we were at the Wild Animal Park we were at the gorilla exhibit and the keeper walked by and suggested that we wait a few minutes because she was going to feed them.  While we were waiting Chantel kept pointing at the gorilla’s and signing food.  She clearly understood what was going to happen.  I thought that was pretty good for just overhearing a conversation. 

Well I survived a month of craziness.  First with Dean and the girls being sick for two weeks then a week of packing, a week of vacation and now that we are home I am getting a cold.  I am going to bed soon to get some rest and hopefully kick this thing.

We have been in San Diego since Saturday and it has been non-stop friends, fun and business. Saturday we drove straight from the airport to the Stillson’s house to have dinner with friends. Sunday several of our friends came to the resort to visit us and I went to the play “I Love Pianos” with some girl friends. It was a wonderful performance they sang and danced for two hours. It was amazing. Monday I drug the family to my old place of work to visit friends. It really made me miss “my old life”. I miss using my brain and having adult conversation. Being a mom is a pretty thankless job sometimes. Dishes are always dirty, laundry is never done, and diapers are always wet. And finally, today we went and took some family pictures at the beach.

I was anxious about the pictures already and then Chantel cried crocodile tears all the way down to the beach in the car, becuase she could see mommy, but mommy wouldn’t pick her up. Both girls have had very little sleep this week. Saturday they only got 20 minutes each with all of the travel and dispite my best effort they have only been getting a fraction of their usual sleep the last couple of days. So, considering the exhaustion, they both did pretty good at the photo shoot. Sharmi had a blast playing in the tide pools.

Other than exhaustion the only other thing that Sharmi is complaining about is her teeth. All day today when she ate she complained that they hurt. It bothered her the most with things that are cold and wet like strawberries. It hurt her to the point that she asked for pain meds and she quit eating. I have given her three doses of pain medicine today and so she hasn’t complained of anything else.

We have some friends from Seattle flying in tonight to do the tourist thing, so the fun will continue. I would love to wait up for them but I am falling aleep as I type, so goodnight to you all.

Cheris

Sharmi is having a toddler rough morning.  Her sister is growing up and she is starting to see her as a play mate.  The problem however, is that Chantel is never where Sharmi wants her to be and she is never playing what and how Sharmi wants her too.  So Sharmi picks Chantel up and carries her where she wants to.  Chantel, now being able to walk, is not pleased about it at all.  I am not please that my baby is squealing when my eldest thinks it is her right to drag her sister around.  In the last two days, it seems that the more I try to “control” Sharmi and try to teach her not to hold her sister against her will the more Sharmi tries to hold her sister against her will.  She isn’t doing it to be mean, she just wants to treat her like a toy that she can control.  I think it will solve it self a little as Chantel gets older.  She is already trying to defend herself by pulling Sharmi’s hair and hitting.  It is actually kind of funny.  :) 

Well, besides this morning we are doing pretty good.  We are getting ready to go on a trip to San Diego.  We are going go catch up with old friends and do the tourist thing.  Sharmi has a board with stamps on it which she has to fill up in order to go with us.  She earns the stickers to cover the stamps by going to sleep by herself.  She was really good at the beginning but she lost her momentum when she would rather have mommy and daddy lay with her.  Except for steroid week and Sabbath afternoon when daddy is home she is laying down for her naps by herself, but she hadn’t made any progress on bed time until this week.   The last 5 stickers had to be for sleeping by herself at bed time.  So this week I am insisting that she sleep by herself.  So far I have been in the room reading, but tonight I am sitting outside the door and hopefully by the time we leave I will be doing normal busy activities around the house while she sweetly slumbers by herself.  And then my real challenge will be to be tough about it when we get back.  It would be such a relief to our lives to not have to lay down with her all of the time. 

Last week was steroid week.  I was surprised at how long it took for her craving to ramp up.  The three weeks prior to her steroids she ate less than I ever remember her eating in her whole life.  She would eat three bits of cereal and say, “Mommy, I am done, I am full,.. look at my tummy it is going to pop… I am not hungry anymore.”  Her tummy was the flattest I had seen it.  She did have some degree of a cold for about 10 days, so that might have had something to do with it.  Come to think of it, her delay on eating probably had a lot to due with all of the drugs she took the beginning of last week.  Monday was the usual chemo at the hospital and the start of her steroids, but Tuesday she kept complaining of different things and asking for medicine.  At the end of the day I was amazed at everything she was on.

vincristine (chemo from Monday still in system), mercaptopurine (chemo), steroid, zantac (for stomach pain), antibiotic, zofran (for naseaua), tylenol with codine (for pain), oxycodone (for pain) swish and swallow (for throat pain) plus the calcium, vitamins, lactobacillus and camomille.  I would feel yucky after all of that as well.

However, come Thursday her appetite was back and she was craving egg noodles again.  She made up for lost time and ate a pound of egg noodles in two days.

Chantel is loving her new found freedom with walking.  We also had a little bit of a special day yesterday because Sharmi went over to the neighbors house to play and Chantel and I went shopping.  I was amazed at how calm and mellow Chantel was.  I think she could get used to alone time with mommy. 

Well, both kids are up and they are alternating between trying to push buttons on my computer and playing with a ball popper that is right next to me.  Both are annoying so I need to wrap up. 

Cheris

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