Wednesday, February 27
Oh drama, and more drama. Our Diva is real Diva and i am sure she ends up growing thinking that Chicken of the sea is REALLY Chicken and not TUNA. But joking aside... Regina loves math, but she likes it her way, within time frame she thinks is enough for her ... She does not like to be rushed, because she just stops thinking and starts guessing...
Past couple of weeks we have been working on mastering counting money- quarter = 25, dime=10 nickel=5 and penny=1. There are times she gets it right and does awesome job. She gets that 3 quarters = 75 cents, and 2 dimes= 10 cents. But other times she does not for instance- today= I asked her how much is 2 quarters and one nickel and her guess was 65. And so ON... It was very frustrating for me because hour before she got all her answers right and suddenly she could not do it... My poor Gabriel should be "promoted" to second Grade right away--- because we constantly repeat everything for Regina, Gabriel has mastered A LOT OF second grade things.... my little smart@$$.
So this makes me wonder- how does her brain works? Why she does so well sometimes, and not so well other times. Why she has delayed response other times( Not very often- like for instance she answers my question few seconds later, or I ask her to pick up her stuff, and she answers to me few seconds later... there are other tiny things I am not sure about , I noticed that her left side of face twitches sometimes, or she uses it bit more than right side.. I KNOW, she has had 2 brain surgeries, and lot of radiation , and lots of chemo and she LOOKS INCREDIBLY good .
But i am starting to notice these "tiny" things now. ...
I just hope that she does not give up and continues to study hard, even though she hates challenges..:)
At school she loves to hang out with teachers and Gabriels classmates. Her fave is her first grade teacher. Every time I pick Regina up, she passes Mrs. Miller. SHe gets very upset with me when I tell her that MRs. Miller is busy with her other classmates. She has to run to her and give her hug, or at least YELL OUT LOUD.. BUY MRS. MILLER... IT is really sweet:) She also talks about Mrs. Stanley often..
I asked her why she does not play with her classmates? BUT I knew answer already- Regina does not like rough play, or ball games, or loosing, or kids making fun of her( happened couple of times).. She likes playing games that Younger kids play. I do not minds,.. as long as she is happy... But I do wish she played more often with her own classmates... She has great classmates. :)
Thursday, February 21
Today was fun day. Well, at least it was fun 15 minutes. I was mystery reader in Reginas classroom. It means. Beginning of school year teacher sends us home letter where she ask if we would like to Read in classroom. Children are not told who will come and read, so this is total surprise for them. I chose to read book ELLA the elegant Elephant.
It is one of my fave children stories. Regina heard it many times, but I thought that it would be great if whole class heard about it. I think they all liked it :) And I could see that Regina was very proud that I was there reading for HER class. This year I did not sign up for volunteering in classroom, because IT has been heck of a few months. So this was special for her.:)
I also called CHLA today. As you know, REgina has central Broviac line.
It is lot of work. I have to flush line with saline and heparin solution every morning. I have to change Line dressing every monday ( our schedule). AND I have to make sure line is in working order, and skin around it looks great and not infected. It takes me usually 20 minutes to change dressing. Flushing only takes about couple of minutes, but i have to make sure I wash my hands at least 20 seconds with hot soapy water. No harmful bacteria allowed.
So anyway. I called to CHLA and asked if we could get Reginas line pulled, since she is off treatment now, and we only need to access her line for labs once in a while. I was told that yes, that it is ok. So we are now waiting our "line" ladies phonecall, so we could schedule procedure to remove her line. In St Jude they just pulled REginas line out without any anesthesia. But in CHLA they remove it with anesthesia.
They will have to put REgina to sleep for it. SO hopefully by the end of next week we get it pulled. AND finally Regina can take showers and baths. I have been sponge bathing her these past 7 months, and let me tell you. IT IS NOT FUN!!! So if you still think that taking care of children with cancer, think twice. IT is not. It is full time job.
Now about me. If you remember , while ago I had lot of back problems due to "hospital beds" and stress. Thanks to my great chiropractor my back has been in great shape. Right now I get adjusted by him at least once a week. It is so worth it. He really knows what he does.
So yeah, if you live in OC area and need Chiro then check out Dr James Reiley.
Wednesday, February 20
Well, After hour wait Doctor Dhall shows up with future treatment papers. I asked him about MRi- he forgot to check it- he storms out of room, comes back 5 minutes later and tells us-
MRI is GOOD. MRS is GOOD. There were tiny changes, but nothing major.... SO Everything is stable :)
Then we did discuss more about REginas upcoming maintenance therapy. It is low dose chemo combined with accutane. It has lot of bad side effects, but it also has its good side. Bad is- Swelling in the brain, fluids in brain, seizures, headaches, loss of appetite, depression, suicide attempts, etc.... But good thing is- it could possible keep her cancer away..
In two weeks we get Reginas counts tested again, if her platelet count is over 100 000 then we can start it. If not, then we have to wait till her counts recovered.
Reginas Platelet count dropped this week, since she has been little sick- nothing serious- just runny nose and tiny cough- just like every other kid has... and that most likely kept her platelet counts down.
Next MRI is in May 20th.
Tuesday, February 19
I Also want you to check out couple of great non profit organizations who have helped us over the years.:)
The Tug McGraw Foundation was established to raise funds for pioneering brain cancer research, increase public awareness of the disease, and support college students who exemplify leadership and Tug’s inspiring “Ya Gotta Believe” spirit. Over 200,000 adults and children annually receive a diagnosis of brain cancer, and the mission of the Foundation is to support research that will improve their quality of life in the physical, social, spiritual, and cognitive areas.
The Foundation develops programs and raises funds for three specific elements in this mission.
- The Tug McGraw Neuro-Oncology Quality of Life Research Center at Duke and grants to other medical and research institutions in the United States
- Public awareness and education activities promoting knowledge and understanding of brain cancer and related issues
- The Diamond 45 Scholarship Program for collegiate scholars
Make a WIsh grants the wishes of children with life-threatening medical conditions .
http://www.stjude.org St Jude is dedicated finding cure for pediatric cancer.
http://www.sunshinekids.org/ Sunshine kids provides positive group activities for Children with cancer. Regina loves sunshine kids.
http://www.larmh.org/ Los Angeles Ronald McDonald House provided us room while REgina was getting treated in CHLA. ( fee per night was 25 dollars).
http://chla.org/ Childrens Hospital of Los Angeles- REgina is being treated there now.
Chemoangels - REgina loves her chemo angels. Thank you Judy and Angie :) And of course Angel Carol :)
These are just a few great groups that helped us. And of course how could I forget all of you who emailed us, called us, dropped a note. Took care of Gabriel when we where to busy caring for Regina. WAIT--- don't run away yet. I may still need you once in a while ;)
Sunday, February 17
Regina REally wanted to go to Goofys kichen- It is a Fun restaurant in Disneyland Resort. Dinner costs there 40 dollars for adult and 14 for Children. It is fun buffet. Disney characters walk from table and table and pose for pics. Today we saw Goofy, Minni Mouse, Chip and Dale, one of the Jungle book characters, Jasmin, Mean lady from 101 dalmatians. Regina Danced with Goofy during their dance session... She ate some Mac and cheese and watermelon... lol
Friday, February 15
Family Portrait weekend in CHLA has started. We had our family pics taken today and they came out great. Now little bit about this event...
Our Mission at Holden's Hope Train is simple: To bring a smile to kids and families on the most difficult journey of their lives, and to let everyone know that kids get cancer too. Our work is inspired by the memory of our son, Holden Kai Bikichky,
The Little boy that could.
Holden was diagnosed with hepatoblastoma, a rare childhood liver cancer in 2001. After a year and a half of Chemo, aniangiogenic therapy, numerous surgeries, herbal medicines and lots and lots of love and prayers; Holden got his angel wings on may 7th, 2003.; He was two years and four months old.
We never had family portrait taken, much to our regret. We want to make sure every hem/onco family has this opportunity while they can. We hope you enjoy the memories..
Sincerely, Caroline & Andy Bikichky.
Pictures are taken by Kristin Farrand, Photographer Extraordinaire.
Thursday, February 14
Happy Valentines day to you all. REgina had a great day in School. SHe told me that she enjoyed seeing everyone and people were nice to her. lol She is funny.:) SInce it was valentines day, all kids exchanged valentines and REgina was extremely happy that kids did not forget about her and got her some valentines as well.. Guess who ended up eating most of her candy--- mommy Diana. Since Regina is allergic to lot of things, then only "somewhat" safe candy for her is mini M&M's... And other stuff ended up in me.. hehe..
Now, why We are full? We are full because I have no shame. I knew it is valentines day, but it did not stop me accepting food from my good friend P. She delivered the bestestest Persian food feast to our house and we ended up eating for 10... I can't say no to saffron rice eggplant tip. I can't say no to chicken and beef kebabs. AND I have to over eat.
Usualy my DH and I went out on Valentines day, but this year we did not. I think we are just lazy. He did surprize me with beautiful over priced Tulips this morning. Fed ex delivered them
just on time...lol
TOmorrow we are going to CHLA for labs and family photo shoot. Also , SInce we are there Regina has Psych testing from 2 till 4pm. And then we are done for a day.
Wednesday, February 13
Today we had to go to CHLA for labs. Reginas counts tripled since yesterday. Her platelets were over 111 000 ( highest ever) and her hemoglobin was also on rise . Her ANC was around 7000- Wohoo!! Awesome. She does not have C-diff anymore.
While we were waiting for lab results, we spent time in playroom, where Sunshine kids was taking pics of kids and decorating hearts :) IT was fun:).
We are going back to CHLA on friday. One professional photographer volunteers his/her time and takes pics of CHLA onco families and does it for free. So we I signed us up and we are going to get our family pic taken. :)
Then on next tuesday we have late night mri ( 7.30). I am nervous about it. I should not be, because I know in my heart Regina is fine, but I can't help it.
Our last few days in CHLA we shared room with 12 year old Valerie. She has been CHLA patient for 3 weeks. Her case is very rare. She has cancer in 3 places in her body- In her lungs, in her thigh and in her spine. Doctors do not know that it is some kind of gland cancer, but they do not know where it is originated. Valeries parents are devastated because they want to start Chemo, but doctors do not give then any treatment plan options. She is getting radiation therapy, but it does not help much. She is constant pain and she has to push her pain medication button every 30 minutes. :( She had 6 biopsies so far, but doctors have no idea what kind of cancer she has.
Regina and valerie had long conversations about "life" and friends, and we were sad to see her suffer. Just send some positive thoughts to her way. :)
Tuesday, February 12
Yesterday was one very scary day for us. We were told that we can get home after regina receives platelets. ( monday).
Regina was given premeds,- Benadryl and tlyenol to prevent any side effects. After premeds were given Regina was hooked up with platelets. And what happened next was scary to all of us.
Regina started screaming. I Never seen her scream like that. She was holding her back and screaming and cramping. At first we thought that it has something to do with her stomach problems, but her stomach is fine and no issues there. Regina started crying and screaming and grabbing her back. Platelets were stopped right away and given her more medications. After platelets were taken off pain stopped. I was relieved.
What happened was - It does not matter what type platelets she gets- a, ab, or 0- does not matter. BUT platelets have proteins attached to them and most likely the platelets Regina got this time were from very strong mail with strong proteins. 6 hours after this incident Regina received new bag of platelets with different proteins in them and she did great.:)
But it sure was scary. Her poor kidneys could not handle it and started cramping. :(:(
AND I would like to say very special thanks to my friend Parisa who went and donated platelets :)
Sunday, February 10
( Reginas Hospital art. She drew my pic, and she hopes that I have baby sister for her soon... I am all about granting her wishes, but she is going to extremes....
I just found out that Regina has C-diff. Right now I do not feel bad at all about getting mad at nurse, and asking for her help when Regina was in major pain and cramps. And all nurse told me - Sorry, we can't do anything.... ugh. :(
Reginas White count is coming up. Tomorrow her ANC will be most likely 500 and she will be out of hospital with no time. She will get some antibiotics for C-diff and hopefully this will be end of her problems.
Now- this is picture of Reginas neulasta- This is medication that I usually give her right after we find out that her ANC has dropped to zero. This medication helps to recover her white count faster. Our home health care agency Crecent has to deliver it to us, since Pharmaceutical companies are not making it available to hospitals... which is weird. Price for that ONE syringe is 3000 dollars.
Hospitals can administrate other drug that is called G-csf. We used it before on Regina and it is very painful 10 days she has to be on it. It is a shot to her thigh muscle and it burns like no other drug- Price for this drug is also 3000 dollars - BUT 10 shots is worth 3000 dollars. So I am really not sure what pharmaceutical companies are thinking or how they decide which drugs to they make available for hospitals to use... weird..
Facts About Clostridium difficile
Clostridium difficile is an anaerobic spore-forming
bacteria, normally found in the digestive tract. When a person
takes an antibiotic for an infection, germs everywhere, in and
on the body, are killed. This allows remaining germs to
multiply out of control. When that happens, loose or watery
stools, cramps and fever can result.
Groups at Risk
Persons at highest risk of becoming infected include
people on long-term antibiotic therapy, people of advanced
age, women, patients undergoing chemotherapy, people with
inflammatory bowel disease, patients in areas with high
endemic C. diff rates and people with renal disease.
Patient Care Infection Control Interventions
Evaluate room placement - private room,
Contact physician and D/C all antidiarrheal medication
Indicate positive C-difficile and contact isolation status
Document stool frequency and consistency
Use dedicated thermometers. Several outbreaks have
been directly linked to contaminated electronic
Disinfect ALL equipment before it leaves the patient
room. C-difficile spores can live for years on
Disinfect shower chair after use
If patient remains symptomatic, contact physician
Patient may be taken out of isolation after s/he has
received 7 complete days of therapy and is
asymptomatic. Contact Infection Control before
Friday, February 8
Sorry for the lack of updates.
Anyway- Reginas ANC is still 0. She received platelets and blood while here and was 4 different antibiotics. She was also hooked up with IV fluids, but now she is completely wireless. Lol.. All we have to do now is wait till her ANC shows up. We guess we have to spend here 3 more days.
She is also very exited about valentines day. She asks me few times a day about it. We already made all valentines for her classmates, and she wants to deliver them HERSELF. She told me SHE wants to go to school on 14th. J I guess I have no saying that she can’t. Doctors also agree with me that it is ok to send her to school , because if her ANC is there and she is not sick- WHY NOT???
Me of course on the other hand , have not been working out at all I have been eating has been settling on my butt and belly. Seriously. What else can I do here? Watch tv, eat, watch more tv, eat…. Watch more tv and eat…. Sadly 4 east does not have wireless connection and I have to sneak out to BMT area to get connection… Oh so complicated… Tonight I will go to McDonalds and get one ore McFlurry and 2 apple pies. Food just tastes better after 9PM.
Sunday, February 3
I just got a call from my husband. He is in LA with Regina right now. Regina spiked 38,5 fever, so Nick is taking her to CHLA ER. Yesterday Regina started complaining mouth sores, so I am guessing mouth sores have something to do with her fever.
Send those get well vibes to her way :) She needs them now.
Friday, February 1
TRANSPLANT went very well. We went to Hospital 8.30. First we did our regular registration, then triage, and from there we went to day hospital where Regina was assigned to her nurse for a day. FOr today it was Gina.
Gina gave us our Room. Usually we do not get a room, we just wait for next available curtain separated chair, and there are at least 14 curtain separated chairs full of patients. This time we got a room but we had to share with kid who had blood transfusion, and whose life was not easy one...
After REgina settled down in her bed, nurse Gina drew Reginas labs. Then she hooked REgina up with IV fluids. After hour of fluids Dr Dhall came in with Somebody who had REginas stem cells in a bag. Very different from St Jude. In St Jude stem cells were brought into room with some medical refrigirator that kept stem cell temperature stable. IN CHLA they were brought in with blue Cold bag. Anyway. Regina was hooked up with heart monitor, with blood pressure monitor. Oh. Before stem cells she got pre medicated. She was given zofran for nausea, benadryl to prevent allergic reactions and tylenol- just incase...lol
Now, stem cells were in tiny bag. It was hung on Reginas IV pole, and it only took 10 minutes per bag to infuse it into Regina. Dr Dhall and Nurse Gina took Reginas vitals in every 5 minuts. This time REgina only had 2 bags of stem cells. SO , it was short 20 minute process.
Regina did extremely well. She did get really bad chills for 10 minutes, but that was because stem cells were working their way to wherever they had to go....
After Stem cell transplant Regina was hooked up with fluids for an hour. Then she had to have platelets because her platelets dropped overnight to 30 thousand. That took about 40 minutes. After platelets Regina had blood transfusion because her hemoglobin also had dropped below normal limit. , so that added extra 3 1/2 hours. . It was 6 pm when we finally got out of CHLA. Regina was walking and responsive and happy. SHE RAN out of CHLA. SHE ran in Ronald McDonald house. She was just happy to get out.. She still is :) Now we are in Ronald McDOnald house. While I am typing Regina is Feeding me sunflower seeds. She tells me that I am bird baby and she is bird momma ..lol:)
Now, we are keeping our fingers crossed for NO FEVER.