Friday, July 29, 2005

Mei-Rose out of surgery and doing fine

Mei-Rose went to Kapiolani Medical Center for Women and Children on Thursday, July 28th. She was early for her procedure and the surgeon, Dr. Shim, was able to get her into the operating room early. Dr. Pi used general anesthisia on Mei. She put up a fight and then when she was asleep, I left the room. The operation was about an hour and went without any problems. Mei-Rose was in recovery for about 2 hours and then was released to go home. She has a 3 inch incision on her right breast and about 8 inches above that incision there is a small incision in her neck. Her port will be used to administer the medication. She knows that it is there and pats her chest to make sure that it is okay. She calls it her "HOKU". We met with Dr. Glaser and and she will receive her first Chemotherapy treatment on Wednesday @ 9:40am. If you saw Mei-Rose today or even yesterday for that matter, you wouldn't have thought that she just came out of surgery.

Today Mei-Rose saw her Orthopaedic Surgeon, Dr. Durkin. He was the doctor that performed the bone biopsy back in June. He checked her biopsy site and says she is healing just fine. She doesn't need to see him again unless there is another biopsy that needs to be performed or complications associated with Histiocytosis arise. She is such a strong little girl. We are so proud of her. We thank you again for your thoughts and prayers.

These are pictures taken today 7/29/05 of Mei-Rose and "HOKU".

Wednesday, July 27, 2005

Consultation with Dr. Shim

Today Mei-Rose went to see Dr. Walton Shim, the Surgeon that will perform the insertion of her Port-a-cath. He cleared her for surgery- scheduled for Thursday, July 28, 2005 at 12:00 Noon. She will have her port inserted on the right side of her chest. We originally scheduled her surgery for 7:30am so that she wouldn't have too much difficulty fasting. Dr. Shim explained the procedure and the placement, possible complications and things to look for. We also went for pre operation blood work at the lab. The guys and ladies with the "blue gloves" set her off again, but at least she walked into the lab without crying. She associates the blue nitrile lab gloves with the pain of having some procedure done on her. She also has a general dislike for anyone in a white lab coat. She doesn't scream at the sight of the lab coat but she doesn't trust the lab coat wearer very much. The anxiety levels in our home is quite high as we prepare for the coming chemo visits....and the side effects that go along with it.....

Although we are concerned about Mei-Rose we thought that we need to let everyone know about our other children and their successes and accomplishments also. Ka`ili will be traveling to Lahaina, Maui for the Hawaiian Canoe Racing Assoiciation State Championship Regatta. She will be representing Hui Nalu Canoe Club in the Girls 13 division. She has done well this season as a steerswoman. Thanks to Uncle Bruce, she was able to take a break from steering on July 4th at the Walter J. McFarlane regatta in Waikiki. She was able to paddle in seat three where she helped her crew to a second place finish to receive a silver medal. Ka`ili and Kaenamoku started school today at Myron B. Thompson Academy. Kaili will start Seminary on Monday, August 1, 2005.

Kaenamoku has really helped out with watching Mei-Rose at home when other appointments and tasks took us away from home. Mei-Rose loves her brother and has subsequently learned a new HI-FIVE sequence that brings us to sore stomach laughter. We are very grateful for Kaenamoku. He is the only Deacon in our ward and one of four boys in the whole Young Mens program. He has grown tremendously and now stands at almost 6 feet tall and weighs 240 lbs. He is looking forward to playing football.

Pua just returned home from Ho`omaka`ika`i 2005 at Kamehameha Schools. She was able to see Kalei Vaivai, a friend from Maui and also Ashley Oshiro, a friend from Pearl City. She also was able to see the Blake's as they just moved back to Honolulu from Maui. Pua would like to attend Kamehameha and has made it a goal to get really good grades this year so that she will be ready for the test. Pua helps out with Faith In God night at church and is our family baker. Need brownies, cookies or a dessert? Call Pua's catering. Nah!!!

Kipakuhia is enjoying Cub Scouting. He attended a Day Camp, where he was so excited he could have walked outside to the car with only his BVD's on!!!! He also participated in Memorial Day at Punchbowl. He really looks forward to Mondays and goint to cub Scouts. He will be participating in our Space Derby real soon. Do I hear anyone wanting to help build the rocket? Nah!

Kala, Kipakuhia, and Pua will start school on Friday, July 29, 2005. Pua will be in the 6th grade, Kipakuhia will be in the 4th grade, and Kala will be entering 1st grade. Kala is excited to start at a new school this year. They are especially looking forward to waking up just a little later. Last year the three children caught the bus to Hawaii Kai to attend Koko Head School. To do that they woke up at 5 am every morning. He wants to play soccer and I think I might expose him to that. He loves to spend time with Zaleigh, his cousin. He can't stop talking about her or anything else for that matter.

Both of us will be attending Honolulu Community College this fall semester working on our Occupational and Environmental Safety Management Degrees. We both were fortunate to receive grants and scholarships that allow us to attend. Primary keeps Samantha busy and Kauokalani stays occupied with those Young Men. As a Unit Commissioner, we wonder where he is but he always manages to come home.

We appreciate all your thoughts a prayers. Our family is alive and well and we will continue to update as the situation evolves.

Monday, July 18, 2005

The wait is over! Now the fight begins.

We didn't want to wait one more minute to let you all know that the waiting is over, and we now know what we are fighting.

Mei-Rose visited with Dr. Glaser today. She gained some weight and is now 32 pounds. He had some test results to share with us.

The pathologist that the bone sample was sent to- has positively identified the cell that he needed to see- in order to make the Histiocytosis diagnosis final. Now that we know what to research, we have lots of homework to do on Langerhans Cell Histiocytosis (LCH).

Today- Dr. Glaser explained the game plan to us as the following.

1. Mei-Rose will go for a skelatal survey on Wednesday, July 20,2005. This will help determine if the lessions are getting larger or smaller, and if they are increasing or decreasing in number. ***There is a chance that this survey could indicate that the bones are already healing. If the healing is significant, we stop here at this stage and continue to monitor Mei-Rose. If not, we proceed with step 2.

2. On July 28, 2005, Mei-Rose will undergo a surgical procedure to place a "port" in her chest. The port is used to administer the chemotherapy medications through the IV. A port is used rather than a traditional IV if medications are going to be used for an extended length of time. This eliminates the need to start an IV every week for 6 months. When this is complete and the port area is healed, we will then move on to step 3.

3. We don't have as much information on this as we would like but this is what we know so far. She will undergo 6 months of chemotherapy with two drugs. One called Vinblastine. The other is an oral medication that you all are probably familiar with. It is called Prednisone or methylprednisolone. The Vinblastine will be administered through the port and the Prednisone is oral.

As we digest all this information and make sense of it, there will be more questions for us to ask our daughter's team. Until there is more info..........Mahalo for your thoughts and prayers.

Tuesday, July 12, 2005

Update July 12, 2005

Mei-Rose went to see Dr. Glaser again, yesterday. We learned that we need to be even more patient than we have been. The pathologists that have seen her slides are all in a consensus that yet another specialist needs to view the slides. We are currently waiting for the return of the slides from Texas, and then those slides will be sent to Pittsburg via FEDEX. We hope that our daughter's condition will improve or at least her spirit continues to be uplifted. Hopefully the pathologist in Pittsburg will be able to help our doctors determine our best course of action. This picture was taken of Mei-Rose and Samantha a few days before she was released from the hospital last week.

Thursday, July 07, 2005

Mei Mei's update2

I spoke to Dr. Glaser (her Oncologist at Kapiolani Med) late this afternoon. He received pathology results that did not immediately point to histiocytosis. The pathologist said that the current slides of her bone biopsy showed some evidence but did not definitively identify histiocytosis as the culprit. So it's a matter of waiting for the results of the electron microscopy. Hopefully, the reading will help us understand what's causing Mei's condition.

Other than the anemia, Mei looks like your typical healthy infant. This picture of her was taken last October at Kakaako Park. She had a ball getting this picture taken. Of course having your brothers unintentionally doing their best imitations of Larry, Curly and Moe does make for an entertaining morning....KM

Mei-Rose Kauanoe Yuk Sim Moikeha

Okay. It got pretty difficult to explain and re-explain to each one of our friends about our daughter's condition. So here is the basic history. We will post more info as we have the time and as we get it.

Our daughter, Mei-Rose, is 20 months old. She is the youngest of six children. She was teething and crying at night for several weeks. She also had a few ear infections that I attributed to her crying at night. One day (June 16, 2005) had difficulty standing and subsequently walking. On June 17, 2005 I took her to Dr. Blane Chong who with consultation with Dr. Okimura, ordered a blood test. The blood results showed that she was iron deficient. Doctor Chong suggested that we take her to the emergency room so that a more thorough blood work up could be done. When we got there, the emergency room doctor ordered a CT scan so that we could figure out why she had difficulty standing and walking. The two problems seemed to be completely unrelated to each other. The CT scan seemed normal but Dr. Young suggested admission so that more test could be completed. CT scans, Xrays, Bone Marrow biopsy, and bone biopsy were completed and Luekemia was ruled out. Many days passed with us waiting for results. Different stains were used on the samples taken from Mei Mei's bones. We were released from the hospital on Tuesday June 28, 2005 and we are now awaiting confirmation from a specialist on the mainland. Histiocytosis is the culprit at this time. The disease is rare with some chance for full recovery. Treatment varies but is similar to cancer victims- chemotherapy. Our daughter is extreemly healthy. We would have not found out about this if we didn't go to the emergency room for the anemia. At Mei Mei's last appointment (July 6,2005) she weighed 31.5 pounds and we still had no word from the specialist. Hopefully something will come back soon.

Sunday, July 03, 2005

Well here we are-the whole gang of 8. This is another chapter in our family's ongoing saga. Much to the disappointment of the older kids, we've moved our family from Maui back to Oahu. We're now living in Pearl City where we are busy as ever. Kaili and Moku are in their second years at an internet based school. The younger kids will be starting at Pearl City Elementary this year and Mei-rose will be the focus for our family this year as we'll later post in this blog. For your info the line up is as follows: Front row: Kipakuhia (8yrs), Kalaolinomaikalani (5yrs), Kahiliopuanaluahine (10yrs)
Back row: Kaenamoku (13yrs), Samantha (not eligible to paddle in the Masters event yet), Kailipakalua (14yrs), Mei-Rose (20mos), Kauokalani (11 oops).