Good morning,

There is always so much I want to share with you and so little time for me to sit down and tell you.  As a result I share mostly facts and statistics and I don’t share the other cute and amazing coping characteristics of our precious little girl.  Unfortunately considering the late hour, tonight will be more facts.

We went to the hospital on Friday and her ANC was still doing well at 2117, but her Hematocrit (RBC’s) was starting to fall and were 23.7.  Due to this we thought we would have to do a transfusion today.  However, our prayers were answered and she kept her hematocrit up to 21.8.  When it drops to 20 they do a transfusion.  They are projecting that this will be required either Wednesday or Thursday.  I am still praying that God will hold those red blood cells up through this entire phase, but I just have to trust him.

Sharmi is still doing fairly well on these drugs in contrast to the steroids and the first part of this phase.  She certainly has her bad times, but overall she still has good energy and is enjoying life.  Today when we got home from the hospital she was really clingy and cranky, but then we pulled out a Play-Doh set with shape cutters, a rolling pin, scissors, and other toys that she got from the hospital last week.  She loved it.  I was nice to see her actively enjoying playing again.  She is also laughing and enjoying tickling again.  Her and her daddy has a good tickle session this evening before she went to bed.  You certainly learn not to take these simple pleasure of life for granted.

One cute thing that she said today was when we were leaving the lab after her port had been accessed again.  I asked her if she wanted to walk or if she wanted mommy to carry her.  She answered, ‘I can’t walk, I have a port.”   The nurse and I laughed and she has since learned that she can still walk., even with the needle and tube hanging from her chest.    She has also made certain to correct her statement when I have told others the story today.  She made sure that she told her daddy that “baby can walk, no owies.” 

Good night to you all.

Cheris

Hello again,

My intentions are to give a brief update and go to bed so I will see how successful I am at that.  Sharmi is three days into her new chemo drugs.  So far she seems to be doing fairly well on them.  The nurse practitioner said they would start to hit her on Friday so we will see.

Her labs on Monday showed a huge increase in her white blood cells with an ANC of more than 10,000 (normal is 1500 to 5000).  This was a huge jump in her bodies recovery.  I am grateful that her body is strong enough to recover like that.  However, her red blood cells were low and they are projecting that she will need a transfusion or two in the next couple of weeks.  I know that transfusions are low risk, but she has enough risk already, so please pray that her body will be strong enough so that she won’t need a blood transfusion.  Unfortunately, they don’t have the same direct donor services up here like they did in San Diego, so we would have to pull from the general bank.

With her numbers being so high they did admit her on Tuesday to start this next phase of chemo.   She had her ups and downs throughout the day, but overall she did well.  It was a very long day.  We were there from 8:00 in the morning to 8:00 at night.  Grandma came to see us mid afternoon.  This gave her someone other than me to jump at her every request.  This of course pleased Sharmi and me. 

Since we have been going back to the hospital every day this week for chemo we have left her port accessed, so that they don’t have to stick the needle into her chest every day.  This is certainly more convenient once we get to the hospital and it avoids the trauma of poking her chest everyday, but Sharmi has been having a hard time with it at home.  It scares her just knowing it is there.  I have to keep it covered at all times.  I have put a little tank top under her shirts and pulled the tub over the top of it so that the tub doesn’t touch her skin and we can hide it between the two shirts.  This seems to help.  The first night I had her in zipper pj’s and she was a wreck every-time we had to take her to the potty (which was a lot thanks to the drugs and antibiotics), because she didn’t want her port exposed. 

Baths have also been out of the question since that requires taking her cloths off, but today I tricked her and I put her in her old baby bath tub on the counter.  She liked seeing herself in the mirror.  I left her shirts on and eventually got her clean enough.  Once the horsey shirt got wet I finally was able to change her shirts, but not without tears and crying.  Poor thing it must be scary.  She keeps saying, “no owies, just diaper”, “no owies just shirt”, ” no owies just…”  She will be getting the port taken out tomorrow for the weekend, and then they will put it back in on Monday for all of next week. 

OK.  My feet are swollen enough now and the doctor told me today that my body is ready to have this baby whenever she decides to come. I am starting to dialate and 70% thined.  (I am sure that is more information than some of you wanted to know.)  Good night, I am going to go and get some rest. 

Cheris

Good Morning Dear Friends and Family,

I don’t know if this is God’s way of getting me ready for the sleepless nights after sister is born, but this is getting old.     For over a month I have been having problems sleeping at night.  If I get woken up in the middle of the night I lay awake for hours, and having a two year old sleeping next to me usually guarantees that I will get woken up.  She stirs and hits or kicks me to make sure that I am still there.  Tonight, however, it was the cats.  They got out last night when we were unpacking and got into a cat fight on the back patio.  I am very grateful that they encountered another cat instead of a raccoon or a coyote.  The cat looked liked he was wild, so I am sure he could do some damage to our California princesses, but I have thanked God that they seem fine.  I couldn’t handle that loss right now, and it would kill me to explain it to Sharmi.  She has learned they they belong to her and she says, “Thats my cat.” 

Speaking of Sharmi, she had a very good week last week and a very nice weekend.  She felt good enough last week to play with her toys again and to have some independent time.  We also went to Grandma and papa’s house for the weekend.  Her uncle Chris and aunt Julie were there also which was wonderful since she hadn’t seen them since Christmas.  The highlight of her weekend was ballroom dancing with Chris and marching around the kitchen with Julie.  She would push the button on one of her toys and when the music would start she would want to dance.  That girl has got the moves!

Her blood counts last Tuesday were only 90 but by Thursday they were over 600.  With them recovering so much in 2 days we have made the assumption that they will be above 1000 by today.  So this morning begins a very long 2 weeks.  Between today and tomorrow she will get 5 different chemo drugs, the majority of which she has not had before.  We will have to go into the hospital 9 days of those 2 weeks to get the meds.  Tuesday will be a particularly bad day.  She will be getting a drug that requires an IV and monitoring so we have to be at the hospital at 8:00 in the morning and they will admit her into the inpatient unit for the day.  If all goes well we will be going home at the end of the day. She will also be getting methotrexate in her spine again with means that she will have to be fasting which always makes the days worse, and she will also be getting several other new drugs pushed into her system.  To add to both of our stress Dean will be gone three days this week.  We will both miss him.

I enjoyed the last week with her so much.  She has been our sweet little playful girl again and some of her laughs are returning.  However, she didn’t forget that she is sick, and she talks about the doctors and the medicines and the owies all of the time.  She keeps saying “ No owies, people take it out (refering to the needle in her port) hold grandma’s hands (grandma was with us at our last appointment), baby not scared, people take it out, go home.”

One phrase she learned while in the hospital last weekend was, ” I can’t.” She uses it all of the time now.  She uses it for things that she doesn’t want to do like take baths or eat her squash, but she also knows that she has limitations due to her health.  Last week I needed to go to the store, since I have been house bound for weeks, but she isn’t allowed to go into enclosed public places.  She didn’t seem emotionally stable enough to leave her at home with Grandma so we all went in the car and Sharmi and grandma stayed in the car and played outside while I shopped.  Usually she would want to “come mommy, come, ” but she seemed to understand that that she could not come with me.  She would walk by the front doors and look inside for mommy, but she would say, ” I can’t go” inside.  I hadn’t specifically told her this, but I am sure she had heard me tell others many times that we couldn’t go shopping because Sharmi’s immunity wasn’t strong enough to go into stores.  I am amazed at what she comprehends at her age.

I am not sure how I am going to explain the next two weeks to her.  As she says, “baby’s feeling better.”  Now I have to make her sick all over again.  The poor sweet thing.  But, there is light at the end of the tunnel.  After we get through these next two weeks “maintenance” should be better.

Well I should try to get some sleep before she wakes up.  Thank you to all of you who are posting comments or sending e-mails.  I am sorry I haven ‘t had time to respond.   We really do appreciate the thoughts and prayers and taking time out of your lives to let us know that you are thinking of us.  It is comforting to still feel your support. 

Love and prayers,

Cheris

Hello,

It has been another one of those weekends.  Today our hearts are very happy and grateful.  Last Thursday when Dean came home from work we noticed that Sharmi’s temperature was starting to go up.  We began monitoring it very carefully because we know that we have to take her to the hospital if it rises above 101 F.  It kept creeping up and up and we were getting scared.  I of-course wanted to avoid taking her to the hospital because thousands of people get sick and died in hospitals every year from infections and we know that her immunity was basically nothing.  Her temperature spiked above 101 and Dean and I agreed to try a cool bath first before we took her in.  We had a special prayer over her and called my parents to pray also.  She didn’t tolerate the bath well because she felt so horrible.  She was trembling when we took her out and her fever spiked to 101.9 F.  We knew we had to go.  We frantically began packing and loading the car with every-ones things, knowing that she would be admitted.  We let her wander around outside in the cool night air and by the time we got her in the car seat her fever had dropped to 99.4 F.  We weren’t sure if this was an answer to prayer or not, but we took her back out of her car seat and took her to bed with us.  We had worship, sang songs, prayed for her of course, all the while taking her temperature over and over again.  Finally, when we were ready for bed, her fever had spiked again and we know we had to go. 

We got to the hospital around 12:30 AM.  Sharmi woke up and called for Papa because she know that we were planning on going to grandma and papa’s for the weekend.  Then she realized where we were (we had told her many times that evening that we had to go to the doctors) and she began to sob.  The good news was that the doctors checked her out and couldn’t find any sign of infection.  They finally admitted us to the oncology ward at 4:30 in the morning.  We were of course very tired. 

Standard protocol is that you have to remain in the hospital for 48 hours for monitoring and to see if her blood cultures any form of infection, so this kept us there until yesterday.  Luckily her fever subsided that night and she didn’t develop an infection of any kind.  However, she still had a very hard weekend.  She was still dealing with the effects of the chemo and the steroids even though they had all be discontinued.  She was in a lot of pain and was taking pain medication about every 4 hours.  I don’t even know how to explain her personality.  She was upset and frustrated constantly.  She was starved, never satisfied, and whinny.  Her grandma and papa came to visit on Friday and I was surprised at how small of an impact that they had her on spirit.  Usually their visits help perk her up. 

The chemo was also causing neuropathy (partial nerve paralysis) in her muscles and in her throat.  She struggled just to sit up or move from one position to another.  The neuropathy of her throat in combination with swollen vocal cords from hydration turned her voice into a raspy whisper.  This was very frustrating for all of us.  She went from communicating with up to 9 word sentences with perfect sentence structure to one word requests that we could not for the life of us understand. 

She wasn’t much better on Saturday, but her Uncle Doug and Aunt Darla came to visit that evening.  She finally perked up a little when we took her out of the room to ride on a little rocket (a little push and ride vehicle).  And we looked at every painting and toy we could find along with way.  We also found an electric train and a padded play area.  She loved the train (not quite as much as her daddy and Doug) and she also played “ring around the rosie” with Doug and her daddy.  It was great to see her smile again.

Yesterday morning she was doing much better from a pain standpoint, but her spirit was still poor.  We told her that were were going to go home and she responded, “no, I can’t go home.”  She seemed to be depressed and afraid.  The only way we got her to agree to leave the hospital bed was when we told her that Rick and Melissa and their dog Rusty were going to come and see us.  (They are very good friends of ours that we hadn’t seen since we left California).  However, once we left the hospital room she began to change.  Her spirit lifted immediately and Dean and I couldn’t believe how happy she was.  She was smiling and laughing and she actually let us play with her and kiss her again.  Once we got home she wandered around the house on her own, she crawled up on the couch to read a book by herself.  She was still saying, “mommy, come sit down,”  but this was a far cry from her standing at my feet in tears saying, “mommy need you.” 

This morning she is also doing quite well.  She was heart broken at first when she woke up and daddy was gone, but after we got through that, she has been doing pretty well.  I was actually able to take a shower.  This is certainly progress.   

In summary, we are grateful that God took care of us through another scary weekend and we are very grateful that we have “our little girl back”.  We are trying to enjoy it while it lasts because we know that she will get pretty sick again in the second part of this phase.  We aren’t sure when this is to begin, because her ANC has to be at 1000 before they will begin.  Thursday night her ANC was 60, Saturday it jumped to 177, and yesterday it plummeted to zero.  We were afraid that they wouldn’t send us home with her immunity being so bad, but thankfully they did and we just have her on three antibiotics.  I have to take her in every 2 days until her ANC gets above 200,  so I will try to let you know how it is tomorrow. 

Hug your kids today.  They are a precious gift.

Cheris

Good evening,

We are thanking God that we have made it through the first wave of this phase.  Sharmalia took her last dose of steroids today for awhile and she is starting a week of break to let her body recover a little bit before they slam her again.  Today was another hospital day, and in comparison to many it was an easy day.  We just went in to get her labs done and talk with the doctor.   We were surprised to learn that her ANC is still at 100.  The steroids usually cause these numbers to go up. 

In these last couple of days she has been eating better.  She is still finicky and doesn’t eat her fruits and vegetables like usual, but at least she is eating.  (Her very balanced diet for this session of steroids is tortilla’s, tender bits and swiss steak.)  Despite her eating better she hasn’t been feeling well.  Yesterday she was a handful.  She whined all day long and there was nothing we could do to satisfy her.  (I could not for the life of me tear the tortillas into the right size.  Nor could I put them in the right place on the plate.) The problem is that she is so miserable that she doesn’t know what she wants.  Luckily my mother was here yesterday to help deal with the demands, but by the end of the day we were both drained.  Mom has obviously been helping a lot through these last several months and has seen her bad days, but in reference to her attitude yesterday she said “I didn’t recognize that little girl.”  It is a good thing that I didn’t start out as an impatient person, however, God is still teaching me the gift of patience (most days). 

Today she was  very lethargic.  There is a place near the hospital that has birds and statues of cows and turtles where we grabbed lunch today.  Just two weeks ago she was chasing the birds and hugging the statues.  Today she didn’t even notice the birds.  She didn’t get off of my lap once and it was even rare for her to lift her head off of my chest.  She was just wiped out.  We are hoping she recovers quickly so that we can start the next part of this phase.  Her ANC has to be up to 1000 before they begin.  I of course wish I could never give her another drug again, but since I don’t have that choice we would like to start her as soon as possible so that she has some time to recover before baby sister is born (she still doesn’t have a name   )  With her ANC as low as it is it doesn’t look good for a start date of next week, but we will just have to pray and wait and see.  I am too tired to worry, so I am just having to trust God to do everything in his time. 

Love to you all.  Good night.

Cheris

Good morning everyone,

I know I have said this before, but what a roller-coaster!  Sharmi has had some serious ups and downs these last few days.  Last Wednesday we were surprised to learn that her immunity was extremely low.  Her ANC was 100 (1500 to 5000 is normal).  She has certainly gotten very pale in the last few days but her spirit was still as OK as could be expected.  She started steroids again on Wednesday so this in theory should bring her numbers back up a little.  These numbers will be artificial for her true immunity but we hoped that it would give her a little life.  However, so far she is losing more life and energy every day.

I took her to a naturopathic doctor on Thursday morning and she seems to being doing well still.  The doctors office was on the bay so she enjoyed pushing her umbrella stroller around, throwing rocks and watching the birds.  I finally talked her into leaving and she fell asleep on the way home.  When I drove up to the house she woke up and she was hysterical.  She was completely uncontrollable.  She kept screaming, “no go home, no go home”  She didn’t want to get out of her car seat.  She wanted me to buckle her back up.  I believe she wanted me to get in the car and ”go see mouse,”  despite her saying it over and over again I have no idea what she meant.  It took a good fifteen minutes for her to calm down.

She also quit eating that day.  I  had taken some food with us and she only ate about 15 cherrios and 2 bites of stripples for lunch.  She barely ate supper that night and she slept very poorly.  She was clearly uncomfortable and in pain during the night.  Friday morning she was very lethargic and refused to eat.  She only took two sips of water and about 6 bites of yogurt that I forced her to eat because her medicines were in them.  I had an OB appointment that day and Dean had to come home to hold her because she was too sick to go with me.  I was getting really worried.  By 3:00 she still wouldn’t eat or drink anything.    As a scared mom, your mind goes wild and you remember those articles that you have read where they talk about the high percentage of cancer patients who die from starvation and not the cancer.  Luckily she is very bright and we can reason with her.  When I got home I gave her some pain medicine, (which she has been choosing to live without).  And Dean and I both explained to her that if she didn’t eat we would have to take her to the hospital because she would get very sick.  Finally about an hour later she began to eat a peach.  It took us quit some time, but between books I was able to get her to take one bit at a time and she ate half of a peach. 

We obviously didn’t go to church yesterday, because her immunity was too bad and she was too sick. Dean and I spent all day trying to get her to eat and drink.  She did well with drinking yesterday, but eating was still a fight.  She seems to be in pain when she swallows, so we believe that she has gotten mouth sores from the medications.  This is not uncommon and she has some medication for it, however the medication doesn’t make them go away, it just helps sooth them for awhile. 

Yesterday afternoon, we took her too the beach hoping that she would enjoy the water and the dogs.  She told us that she didn’t wan’t to go, but we thought she would enjoy it once she got there.  I think she enjoyed it a little, but we were only there a short time and she kept asking to “go home, please.”  She didn’t even have much interest in the dogs.  She pet a couple of them for a brief moment, but she was clearly not her dog loving self.  It was really cute, she saw a dalmatian dog and said, “leopard.”  We of-course told her how smart her logic was but that that some doggies have spots also and that was a dalmatian dog.  She simply said, “oh, OK.”

She looks like a sick little cancer girl now.  It is amazing how much she has changed in a week.  Dean came home last Tuesday and asked me if I cut her hair.  She has lost the last wisps of her original hair in the last several days.  Now she is pretty much bald, her coloring is yellow, her eyes are sunken and have gone from red circles to gray circles, and she has the creases in her forehead that I have been seeing in other cancer patients over the past few months.  I am not sure what they are caused from.  I think it is just because they are sick and skinny and don’t feel good, so all of their worry and frown muscles are showing.  “Sigh.”  It is very painful to watch.  Dean said the other day,  ” I remember when we were pregnant with her and people would say ‘You will never know a love or a pain as deep as you will with your child.’ He continued, I had no idea we would have to feel the pain so early in her life.”  As painful as it is I thank God for her everyday.  She is such an incredible little girl and we are blessed to be her parents.

I know our lives are full right now, but please feel free to contact us if you wish.  You are all very special to us and you have been going through this journey with us.  The support you have been is still very comforting.  Just yesterday Sharmi was playing with books that play songs, sticker books, puzzles, and stuffed animals that were given to her by all of you.  Thank you again for your love and generosity through this time. 

(I am not going to post our number on the web site, but you can either get it through the Escondido church or you can e-mail me directly at cherisjones@yahoo.com.  Please note that I don’t check my e-mail that frequently.)

God Bless,

Cheris