Good Evening,

Another day has come to an end.  I am really grateful that Sharmalia does not have to go in for treatment tomorrow.  It takes a lot of stress off of both of us.  This morning was rough but she seemed to be doing better by evening.  She is coming off of the steroid (the last dose was yesterday morning) and she is having similar reactions as last time.  She was very shaking today.  It was most noticeable in her hands.  She is also still complaining about the pain in her hips (which she had with this drug before), but I am hoping this will go away soon.  Overall her spirit seemed good. 

One problem we are having however, is getting her to go to sleep at night.  It is common, especially on the steroid, for her to be restless and not sleep well, but she has still gone to sleep.  The last two nights have been especially hard.  It has taken an hour and a half for her to fall asleep.  She will lay in “mommy’s bed” quietly until I get up and leave the room and then she will scream hysterically.  Last night I finally traded guard with Dean and she let him leave.  Tonight I resorted to rocking her to sleep in the rocking chair.  (It wouldn’t been so bad if I could go to sleep with her, but unfortunately I have too much to do after she goes to bed.)

On a happier note, she is talking more about “baby sister.”  After the ultrsound, a month ago, she refused to talk about the baby most of the time.  Yesterday she held up her shirt and was talking about her tummy and then she pointed to mine and said, “mommy tummy, baby sister.”  Then today while she was sitting on my lap she patted my tummy and said, “sister.”  She will be a great big sister if we can manage the security and jealousy.  She fusses over everyone.  Even when the cat sneezes she asks, “You OK, Bali?”  She will be quite the little caregiver.  She is certainly learning how to empathize.  It will be interesting to watch God’s plan for her unfold in her life.  What a joy she is!

Love and prayers to all of you,

Cheris

Good Evening,

“Sigh,” what a day.  Dean came home this weekend with a weird sort of cold/flu.  Yesterday he had enough strength to go to some of church and we also spent a couple hours at the Wild Animal Park, for our last visit before we move.  Today, however, he has been really really sick.  It has been hard on Sharmalia because she wants to spend time with her Daddy, but I am trying to keep her from getting sick. 

Sharmalia began the third phase of chemo, “Interim Maintenance”, on Wednesday.  This is a harder set of drugs then the last phase.  She will be getting the Methotrexate orally instead of in her spine.  The nice thing about this is that she doesn’t have to fast and have the spinal procedure every week, but the bad part is that it has more side effects, since it flows through her entire body.  She is also getting the steroid, “Dexamethasone” again for five days.  This is the drug that was responsible for the muscle atrophy, bloating, pain to touch, sleeplessness, crankiness, and general fatigue.  (It is a fun drug.)  It was amazing how quickly it effected her.  She has become much more emotional and has been clinging to me for days.  Yesterday I had to strap her to me in a sling just to get my make-up on.  Today she wouldn’t let me put her down at all until around 6:30 pm.   I was very grateful for the few brief minutes where I could get food out of the frig or go to the bathroom without holding her.  She felt so bad today that she didn’t want to watch TV and she actually asked to go up to “mommy’s bed,” three times. 

Speaking of bed, I desperately need some sleep also.  Good night. 

 Cheris

Hello,

This past weekend reminded us how fragile our little girl still is. We were supposed to have a great weekend of play with our friends, but Saturday morning when we were rushing to get ready to go to Sea World Sharmalia slipped and fell getting out of the tub. She cried uncontrollably, for what seemed to be an endless amount of time, which was not like her. She had hurt her left leg to the point that she could not walk, stand or crawl on it. We took her to Sea World anyways hoping that she would enjoy the animals, but she found very little joy in the day. At the very beginning of the Shamu show she began saying, “All done, whale. Home.” She also didn’t do her usual clapping and dancing to the music.ÂI can’t tell you how horrible it is to see your two year old depressed. My heart wasn’t very light that day either. We were uncertain as to how long this set back would be.

Sunday was another hard day. She did better at being held by others beside mom, which was helpful in getting some things done with Dean. John and Julie watched her for several hours but also stated that they had to hold her constantly.

Yesterday morning brought relief to me when Sharmi woke up happy. She was smiling and laughing again. She had slept until 8:00 which is unheard of for her, but the extra sleep seemed to really help her body and spirit heal. She still was not able to walk yesterday, but she was able to take a few weight baring steps with help. However, the one thing that did surprise me was when I put her down for a nap and after a few minutes I heard her calling me from the top of the stairs. This is no small feat since our bed where she was resting is very tall and hard to get down from. It was good to see that she still had determination.

This morning she woke up cranky, but has regained more strength. She had PT with Tammy and Sharmalia did very well once she woke up. :)  She had fallen asleep on the way there and it took the combined effort of Julie, Tammy, musical toys and myself to wake her up. We were pleased to see her walking around and playing with toys, but did notice swelling in the back of the left knee that we hadn’t seen before. Both the physical therapist and her Sharp orthopedist have recommended an x-ray. Tomorrow is the beginning of the next phase of chemo, so we may get an x-ray of her knee while we are at the hospital. We’ll keep you posted.

Cheris

Hi Friends and Family,

As Sharmi told you yesterday, our very dear friends John & Julie and their children Logan and Jennifer have come to visit us and help out with everything that goes along with taking care of a sick kid and getting ready to move. We are so glad they are here and Sharmi has had a great time playing with them.

This morning I took Sharmi into a hyperbaric oxygen chamber for a test run. It is a tube like a little submarine that you climb into and they pump in high pressured oxygen. I was a worried about being stuck in there with a scared crying kid, but they showed Cinderella through one of the porthole windows and she was as happy as a clam. She was only upset when they turned it off. She said, “again, watch mouse!”

I am asking for everyones prayers over this treatment. I am getting a lot of mixed feedback on whether we should include this treatment as part of her care. It recently saved the life of a six year old boy who also has ALL Leukemia. (I am aquainted with them because his mother is a MD at Sharp.) He got an infection when his immunity was down and he lost several organs and they feel that the oxygen was the miracle that saved him. I have communicated with several people, including two naturalpathic doctors, and some say that it is great and they believe in it and others say that it may increase her chance of relapse. I am feeling very overwhelmed with these decisions right now and I would appreciate it if you would pray that we will know what path to follow. Some believe that all children with cancer should be treated this way and it has been suggested that Dr. Murray Rosenthal, Medical Director of California Clinical Trials, might be interested in using Sharmalia to show the benefits for child cancers. If oxygen would help children survive not only cancer but also survive the horrible and painful side effects of the chomotherapy treatment I would love for Sharmi to be a part of bring better care to all children. Please pray that we will be guided in this decision and that God will use Sharmalia to make things better for other children and parents who face this hellish journey in the future.

While you are praying, please pray that our house will sell so that we can be free of the financial and logistical burden. We have a lot of burdens right now and it would be wonderful to have this issue resolved… and I am also really tried of keeping the house clean.

Thank you for your prayers.

Cheris