12/30/08 Update

jaimee has been feeling really tired and her joints have been hurting her...last week she had to take medicine for the pain but is doing fine now...
today we went to COH for an unscheduled blood test, jaimee thought her counts were down and might need a transfusion but to our surprise her count went up by .4 which means no blood today...jaimee was hoping for a transfusion so she wont be so tired for the festivities on new years eve and new years day, hopefully she'll feel fine...
jaimee is still on the low side and may still need a transfusion when we check into the hospital on friday...this will be jaimee's 4th treatment...we're almost half way there...wooohooo...
jaimee is off of her diet this week and is having a great time eating everything with shoyu...
we wish everyone a safe and happy new year...
love...jaimee, tay, bryce, and jodee ; )

counts are down

jaimee came back from the hospital last sunday night with a low red blood cell count and had to receive a transfusion last tuesday night...its amazing how a little blood gives her more energy...nancy...sorry we missed you at clinic, we were there from 4pm - 9:45pm...
on friday the 19th all of jaimee's counts were at their low...hopefully the neulasta shot she received today will help bring up her white cell count...
jaimee goes back into the hospital on january 2, 2009 for round four of chemo...we're almost half way there...wooohooo...

Update

Hi Everyone...
Jaimee had a PET scan appointment at 6am last Friday but was unble to go through with it because her glucose count was way to high...Finally last tuesday Jaimee's count was good enough to take her scan and today we received the results...
Dr. Aremian said the lumps went down which is great but because of the Neulasta shot (builds up the white count) Jaimee's WBC was at 71000 which makes it look like she has leukemia in her bone marrow which freaks out the nurses...Dr. Armenian assured us that it's probably the Neulasta that is making the results look bad and we'll have to take another PET scan after two more rounds of chemotherapy...He will lower her dose of Neulasta by 50% and if her count is still to high he may have to take her off of Neulasta before her next scan...
No room in the Pediactric ward this morning :( which was ok cuz we got to give Jai her last good meal (back home) before she checks into the hospital tonight...hopefully the all you can eat sushi digests (cooked) before she gets sick from the chemo, we don't want all that seafood coming back up :0
Jaimee is responding well to her therapy and we will continue with the same treatment with the exception of Neulasta...WoooHooo...
Hopefully Jaimee will be checking out of the Hospital on Monday...

2nd session of chemo

another round of hospital chemo over with...wooohooo
this time was a little worse...5:30, 7:30, and 10:30am jaimee was sick to her stomache from all the heavy chemo...
she slept a lot on friday, saturday, and sunday morning...crackers, diet ginger ale, and water was all she wanted while nauseous...
finally i ordered chicken tenders with bbq sauce, fresh fruit bowl, doctored up her vegetable platter with garlic salt and american cheese, and oredered a diet italian ice which made her feel a lot better...it was amazing watching her eat it all...
everyone at the city of hope are wonderful...all the doctors and nurses that come in compliment the way jaimee looks, acts, and her attitude towards everything...
jaimee always says please and thank you no matter how bad she feels...i'm very proud of her...
mom

No Epilady Duct Tape Instead :o

What a weird night of bonding...
We started out plucking nubs out of jaimee's head and decided it was taking to long...Tay had an idea of duct taping the nubs out, which Jaimee agreed to...After taping Jiamee's head we thought we would try the epilady to her head to get the rest of the nubs out but as soon as Tay touched Jaimee's head she screamed...That stopped that and we continued to duct tape jai...
Jaimee looks good bald and has a cute little head, it feels really soft...
Jaimee is off her meds and will go back into the hospital this Friday if all is well with her blood counts...She seems to be doing ok but her joints hurt and her body feels like a giant bruise...
we'll update you soon...

A New Do

OMG...Atfer seeing clumps of hair on her pillow, floor, and brush Jaimee decided to get rid of her hair today...
Jaimee is a strange one...She wanted us to pull her hair out before she let Tay and I cut and shave it all off...That was just wrong!!!
Jaimee always cried after every haircut but for some weird reason Jaimee did not shed one tear today, she was very happy to have it all removed...
Tomorrow is another day for testing Jaimee's blood...The doc said she may need a transfusion or platelets soon...Hopefully we can use the blood and platelets Bryce has graciously donated to her...Thank you sweetheart ; *
I would like to thank everyone for being so kind to all of us, we greatly appreciate your support and friendship...
love,
Tay and Jodee

another blood test

Jaimee spent three hours at the hospital to test her blood count today, unfortunately they lost Jiamee's blood and had to re-take it again...Good thing they left the needle in the port a cath so it wasn't such a big deal to her...

Jaimee didn't cry at all today, she is very proud of herself and so are we ; )

Even though Jaimee's white cell count is dropping she seems to be acting normal...She even drove to my apartment and back to her dad's house today...

11/07/08 Out Patient Chemo

Jaimee had to have her blood tested and freaked out before they stabbed (Jaimee's words) her in the port a cath, which is still sore from the placement of it : ( After a couple hours of out patient chemo she was better with the port being used...

Jaimee earned a poke bead, chemo bead, and a compliance bead for today...

This hospital is pretty cool, jaimee gets to relax in a recliner and watch TV, play wii, playstation, and other games if she wanted to...They will also bring her food, snacks, and order out for pizza...They are very nice and accommodating...

Jaimee's anemia is about the same as when she left the hospital, which is good...The doctor thinks in the next week or so her count should be dropping and may need another blood transfusion but we'll have to keep checking her count twice a week to see...(November 7th, 11th, 14th, & 18th)

Dr. Armenian told Jaimee she can be off of her diet until she goes back into the Hospital on November 21st...wooohooo...She's craving everything and eating it all...it's pretty amusing and amazing...

11/08/08
Jaimee commented how she almost didn't cry for her Neulasta (helps bring up her white cell count) shot today...She did pretty good...

We're very proud of her...
Mom

I'm Home

Today was Jaimee's best day in the hospital...
She was unleashed from all those tubes and bags she had attached to her
The doctor said her parents do not have to give her a shot everyday like we thought
Jaimee was sent home with 7 different kinds of medications to take throughout the week-no shots until Friday...woohoo...
She met and took a picture with the, "Fight For Life" police and sheriff teams which may get published in their newsletter, we'll see...
http://www.fightforlife.org/
Jaimee earned 16 beads of courage for everything she went through so far and will continue to earn more throughout her journey
http://beadsofcourage.net/

Jaimee's immune system is not the same as everyone else, with chemo she will not be able to go shopping, b-day parties, school, family gatherings, or anywhere else with a lot of people around...If Jaimee has a fever of 101-102 degrees she will have to be admitted to the hospital...Hopefully with our flu shots we won't catch anything and give it to her...

Jaimee is on a strict diabetic and low tyramine diet http://www.healthsquare.com/mc/fgmc2007.htm which we're trying to follow...We'll be cooking a lot of fresh stuff for Jaimee and giving the leftovers to Tay...hehehe...Dr. Armenian said Jaimee will have an uncontrollable hunger that will amaze us...We can't wait to see it happen...

We go back on Friday for her check up, shots, and to meet and greet other patients going through cancer...

1st & 2nd Day of Chemo

What a horrible experience for Jaimee...
Jaimee felt dizzy and nauseous with her first treatment today...It was like she was drunk but without any alcohol...She said she hates to throw up and did it four times last night...
They figured out that 50mg of Benedryl is way to much for Jaimee to handle and cut it in half which eliminated the dizziness, hopefully that will help stop her from getting sick...
With all the chemo Jaimee is having she sleeps a lot and doesn't want to eat, nothing sounds good to her...
The doctor came in to check on Jaimee and said she is doing better then some of his other patients and everything is going well...Jaimee was relieved to hear that and even smiled, which was nice to see again...
Mom

October 30, 2008

Poor Jaimee, it looks like a vampire bit her on the neck...The surgeon tried to place Jaimee's port on the left side but had some complications with the swollen lymph nodes in the way so they had to place the port on the right side instead...ouchy

Jaimee's room wasn't ready to check into after surgery so we had to push her around in a wheel chair and eat lunch at the cafeteria, which she loved...We finally checked Jaimee in her room just before the the Oncology team came in to consult with us...

Dr. Aremenian gave us a lesson on each Chemo medication Jaimee will be getting (Bleomycin, Etoposide, Doxorubicin, Cyclophosphamide, Vincristine, Prednisone, & Procarbazine) and what to expect from all of them...Jaimee also needs to gargle with Biotine and swish and swallow with Nystatin to try and prevent mouth and esophagus sores...Yucky!!!

Since Jaimee's PET scan showed cancer in her bone marrow she did not have to have another bone marrow biopsy...wooohooo...With that said, Jaimee is in Stage 4 B but Dr. Armenian is confident that the, "City of Hope" will cure her from Hodgkin's disease...

Jaimee did have to have 2 units of blood pumped into her since her blood count was so low (8.7)...Jaimee and I were up all night with the nurses checking on her for adverse reactions, vitals and constantly going to the bathroom...The doctor said Jaimee will need more transfusions along the way but we don't know when...Bryce donated on Thursday but I guess it takes a couple days to filter it out so we had to use the blood bank instead...

October 29, 2008

Jaimee did more tests yesterday but no needles...wooohooo

Tomorrow Jaimee checks into "The City of Hope" for a port to be put into her chest to access her veins when needed...While Jaimee is under anesthetic the doctors may decide to do another bone marrow test on the left hip where the PET scan showed cancer activity, not on the right one : (

When Jaimee wakes up from having the port put in she will be admitted to the paediatric word of the hospital for her 1st chemo treatment...The doctor will let us know when she can come home, hopefully 3-4 days from tomorrow...

Tomorrow will be the start to a journey of recovery...

Mom

City of Hope

What a great experience for all of us but especially for Jaimee.

The doctor was very thorough with his consult today and told us he will cure Jaimee...He was very confident of the medicines and staff at their facility...

Jaimee is going back tomorrow morning to do a few more tests...Hopefully all the results will come back an an hour and a half after our appointment so they can place a port in Jaimee's chest for chemo...

Doctor Armenian said Jaimee will have to be admitted into the hospital 3-4 days twice a month for her treatments and may not have to have radiation after chemo is over with, we'll have to see...He wants to start tomorrow if possible...

Dr. Armenian told Jaimee school will have to wait and that she may have to drop out, we'll find out more when we speak to the social worker and an educational advocate tomorrow as well...

This is going soooo fast and very overwhelming for Jaimee...

Thank you for all your support for Jaimee...It's great to know she has so many friends to help her get through this tough time...

Tay, Bryce, and Jodee

Bone Marrow Test Today : (

Today was the most traumatizing day ever.

I was scheduled to have a bone marrow biopsy and aspiration, which i was majorly stressing about. We got there and waited for the nurse to call me in. When she did she took my weight and blood pressure. After she took my blood pressure she decided to surprise me with a blood test. I absolutely hate blood tests and since it was a surprise it made everything worse. I had a panic attack and started crying. I think I scared the other patient in the room and the nurse as well. After the blood test we had to sit and wait for the doctor. Before the doctor came in the nurse came in to give me medicine to relax. I wasn't as scared for this shot because i just had my blood drawn a few minutes earlier. So the nurse pinched my skin and stuck me with the needle and I thought this isn't bad I can do it. But then she started to inject the medicine and my skin started to burn. the burning intensified as the medicine was injected into my arm. I felt like I had an inferno in my arm. The shot was supposed to relax me but I think it made everything worse. I listened to my iTouch to try to keep my mind off of things and it worked until the doctor came in. So when the doctor came in he told me to lay on my side in the fetal position to find the best spot for the bone marrow biopsy. I was crying and the doctor kept on telling me it was a small procedure but it didn't matter to me because it involved needles and blood. By this time i was extremely nervous as he was swabbing my hip with betadine and alcohol. Dr. Lim then gave me a numbing shot to the hip and then another one into the hip bone, which was more painful then he said it would be. Now it was time to start the biopsy. The doctor said I would only feel pressure but I felt everything that he was doing and it was definitely more than pressure. I cried and screamed a few times...The music did not distract me at all. My chest felt like it was going to collapse and my leg felt like it wanted to fall off, i was hating life. It was the worse experience of my life.

Dr. Lim went over the PET scan and told us I am in at least stage 3 of my disease and we'll find out next Tuesday if the cancer is in my marrow which will up grade me to stage 4. We then decided it would be best for me to go to, "The City of Hope" where they have more treatment programs with experimental drugs and clinical studies. We also decided to check out the pediatric care center verses the adult center. We have our first appointment on Monday and hopefully will be starting chemo this week.

Thank you Nancy Sakakura and Staci Fujita for all the help you have given us. Dr. Lim said that the City of Hope is the best choice for me.

Wig hunting today...AAAGGGHHH
When we walked into the store I was excited and kinda creeped out. It was weird because there were a bunch of heads all over the walls with creepy faces on them. but there was a hot pink wig and i started to get excited because I wanted to try it on. We then were greeted by this crazy Asian lady to try a few wigs on. She was very pushy, rude, and not a very good listener, she picked out wigs that she said were cute, and said no to the ones i wanted to try on...The wigs she picked were probably good for people her age, not for me. She said she has been doing this for 31 years and knows what she is doing and said I was not ready for a wig yet.

We then walked out very disappointed and went to this really nice lady in Westminster that hand makes real hair wigs for a fraction of what it would cost somewhere else. They were extremely nice and we finally had a good experience. Tomorrow we will check out one more wig place and see what they have to say. This is so exhausting!

Thanks for your thoughts and concerns...I will update you all soon.

Jaimee

First Consult with Dr Lim - Hematologist Oncologist

October 10, 2008

Dr Lim explained that with Hodgkin's Lymphoma I have a 95% cure rate if I am in stage one or two with the disease and if I am in stage three or four I will have a 50% cure rate.
Since I haven't lost 10% of my weight Dr. Lim thinks I may be in stage one or two which is great!
In order to figure out what stage I am in Dr. Lim has ordered a PET scan tomorrow and a bone marrow test on October 24th, I HATE NEEDLES!!!

I will be having a minimum of 8 months of chemotherapy and another two months of radiation. Along with chemotherapy i will need to have a booster shot the day after my infusion.
Dr Lim has warned me that I will be losing my hair through all of this : (

I am constantly tired from night sweats, fevers, stress, and anemia. I love to sleep when ever possible and I have a very short attention span.

Dr. Lim has advised me to stay away from baby sitting, coaching, and sick people. I have to wash my hands all the time so I don't catch anything.