Monday, August 27, 2007

Countdown to Day Zero

We finally got the necessary documents from Cincinnati. Erin will be Elyse's marrow donor. There have been lots of tests ordered in preparation for the BMT (Bone Marrow Transplant) and we have been busily taking Elyse and Erin to CHLA to finalize the required tests before Day Zero (Day of BMT). Susan and I are anxious to see Elyse whole again.

As we have explained briefly in previous posts, the BMT process will be an intense time of Pre-BMT Chemo to wipe out Elyse immune system, waiting to see if the graft has taken over successfully, hoping that none of the complications will occur, rearranging our schedules to give equal time to Elyse who will be in isolation at the hospital and to Faith and Erin who will be at home. I guess we will deal with it as we have been doing.

Friday will be the start of the whole process. Elyse will be hospitalized from this point on through BMT and recovery.
Friday - Central line in her chest / Remove the PICC in her leg
Tuesday (day -9) - Start Chemo to wipe out her immune system
Thursday - Sep 13 (Day 0) -BMT
After Thursday is dated (Day +1 and on...)

We need your help! After her immune system is completely destroyed with high-dose chemotherapy and after transplant, Elyse's blood counts will be very, very low. So, she will need blood and platelet infusions for 1-2 months on a regular basis. We are asking anyone who is willing to donate specifically to her to contact our friend JP at johnpark(at)mmyouth.org (replace "(at)" with @). We need a steady stream of people instead of a one time blood donation like we did in the past. Elyse will need 1-2 blood donors & 2-3 platelet donors spread out during the week. We've been told that men are better for platelets because they have better veins. Platelet donation takes approximately 2 hours, so please be advised.

Prayers...well there are so many prayer requests, but we will list the major ones only.
1) Elyse's health during this process. Pre-BMT Chemo has a lot of horrible side effects (short and long term). There are many complications that can arise after BMT.
2) Please pray for Susan and Me. We will not be staying overnight at the hospital since the Bone Marrow Transplant Unit does not allow caregivers to sleep overnight in the isolation room. The drive back and forth from L.A. to home everyday will have its challenges. We cannot get sick during this time or we will not be able to take care of any of our girls.
3) Erin as the donor will have to deal with anesthesia and recovery.
4) We hope that the stem cells will find its way to her bone marrow and grow quickly and successfully.

Thank you all for standing with us. Susan and I talked about how far we have come in 4 short months as we drove back home from the hospital today. We can still remember the situation go from bad to worse as we moved Elyse from Facey to Northridge and finally to CHLA. We also recall the concerned faces of friends and family members as they followed Elyse's progress. We could not have gone through this without your support. Getting through the last 4 months was truly a team effort. Thank you to our dear friends and family.

Friday, August 17, 2007

Updates

Hello again,

We have to make one correction to the last post. Results from Cincinnati are not in yet. We are still waiting for one last signature verifying the lab findings. I think we've been waiting for that one signature for 1 month now. Should we start a email campaign to Children's hospital in Cincinnati so that we can expedite the process? <----Half joking....half serious

We've been taking Elyse to the hospital many times for tests. We went in for her CT scan today, but couldn't go through with it because Elyse would not drink the contrast. We have to go back early on Monday. They will put a tube down her throat and drip the fluid in for one hour. I wish the nurse would have told us that we had to give her the contrast by a certain time so that we could have finished the CT scan by today. We will have to make Elyse fast again on Monday!

She may be admitted to the hospital by the end of the month. We need that letter to start.

Kayti, our drive organizer from Philly stopped by to see Elyse, Faith and Erin this week. It was great meeting for all of us. She brought an album filled with encouraging letters form the Philly marrow drive. I will scan and post them on Elyseyu.com - Encouragement section. You can see photos of Kayti and Elyse at Kayti's facebook site "kayti c."

Drives are continuing and we have some big results from the Bethel Marrow Drive thanks to our friends Steve and Joanne. 111 from Bethel. I heard from A3M that Steve was instrumental in getting the high recruitment numbers. Thanks Steve.

We have teamed up with the Denke Family , TCPOMC (Multiples Club) and DKMS Americas for a bone marrow drive in Chino Hills. More information to follow. Xander and Carrie have been busy promoting drives for Ethan and Keane. They have been mentioning Elyse everywhere they go as well. Thank you both. We hope to hear good news for Ethan and Keane in the near future.

More next time.

Wednesday, August 8, 2007

Good News!!

We have a lot of good news for you all. Please read on.

Good News #1:
Results are in from Cincinnati. Faith and Erin are fine.

Good News #2:
We've learned that Erin might be a possible match for Elyse. She is being further tested to see if she can be the donor. This is great since a sibling is the ideal match.

Good News #3:
Elyse might be admitted to CHLA to start prep work for BMT as early as next week with hopes that Erin will be the donor.

Outline of process:
1) Elyse's ankle PICC line will be removed in exchange for a more stable Hickman Line
2) Strong Chemo will be given for 1 week prior to BMT to wipe out her immune system (counted as negative days).
3) Other drugs and antibiotics will be administered
4) Many side effects from Chemo and drugs that I do not want to list at this time
5) Elyse will be in a sterile isolation room where only a designated number of people may enter.
6) Day of the BMT will count as day Zero
7) Recovery (1 month up to 1 year at the hospital depending on individual recovery results)
8) Discharged if everything goes well and the graft takes
9) Extremely cautious while at home

We hope that this news will not decrease the momentum for future bone marrow drives on Elyse's behalf. Please continue with the planned drives. Our intetion has always been to help as many people find a match through Elyse's Story and there is still a chance that Elyse might need to find an unrelated donor if Erin is unable to be the one.