Wonderful News

The home health nurse, Wendy, came over on Christmas Eve to take Erica's blood counts and by noon, we got the word that her marrow had recovered from chemo and her counts were up. She bounced back from the last chemo treatment in only 9 days, which has never happened before . . . this was our Christmas gift! She was feeling great and on Christmas day she was all smiles and energy. We had a wonderful day, we were filled with the spirit of the season and completely enjoyed every moment.

We have a date! January 22nd will be the day of Erica's transplant! We have A LOT to do between now and then . . . several tests and then, of course, the radiation and chemo. Beginning January 2nd, we will be very busy, running back and forth to UCDMC. I've been working on packing our hospital bags; new toys for Erica (clean and sterile), new pillows (per the nurses instructions), and bedding. We will most likely be on the 8th floor for 6-8 weeks.

I am excited! Really, this is amazing. We are so blessed to have a donor, not just that we found a match but that the match is healthy and able to go through the bone marrow harvest and that it all works with our time frame. There is so much that goes into the process that you quickly realize what a miracle it is . . . we actually have date!

For the next few days we will just be enjoying our time at home. Erica is, once again, close to walking on her own. She pushes her scooter all over the house and transfers between furniture. She loves swimming in the bath tub, she gets on her tummy and kicks her legs to make the splashes! She love puzzles and anything related to making music. And the final update . . . she is finally saying "da-da" . . . which makes you-know-who very happy!

Happy New Year! Thank you for all of your prayers, God is listening!

Merry Christmas

The ericalivesey.com website has been down for a couple of weeks, so I decided to create another way to blog. We'll probably keep the blogs here since it is all real time and I am going to be blogging a lot through out the next couple of months.

Erica has been doing well. She had her last therapeutic chemo treatment last week. Her counts are dropping, as expected, and we hope that the marrow will recover soon so that she can have a few good days before all of the transplant activity begins. Erica is loving the Christmas tree, she admires her favorite ornaments every day. We also have a big Santa by the fire place and she knows who Santa is; in fact she is shocked when she hears the radio playing songs about Santa. She looks at me like, hey, how do they know that Santa is at our house! Our goal is to be home for Christmas day. This is the time when we need to be careful about checking for fever . . . so our prayer is for a fever-free holiday!

The transplant procedures begin on January 2nd. She will have several days of tests; heart, liver, ears, kidneys, and bone marrow. She will also have x-rays and tests taken of her teeth and jaw; sometimes the radiation affects the enamel and jaw bone. These tests will provide baselines for all of the potential side effects to radiation and transplant.

Then on or about January 9th, we will begin cranial radiation. This will occur once a day for four days. After this round, we will pack up and move to the 8th floor, transplant unit at UCDMC. This will be our official transplant admission. The next day, we will begin Total Body Irradiation (TBI). TBI will take place twice a day for four days. I'll keep you posted on how it all goes.

There is so much unknown at this point. No one can predict how this is all going to go; I like to think that she has done so well for so long . . . why would this be any different. She is tough and I know that she has the determination to get through what ever holds her down.

This Christmas we are touched by the love that surrounds us, the angels that protect us, and the Spirit of Christ that carries us.

We wish you and your family peace, now and always.

CR2

Over the last few weeks, Erica has had 7 spinal taps, the 5th and 6th spinal taps were both negative for leukemia cells in the spinal fluid (we are waiting on the official results of the 7th, but preliminary results show neg.) which means that we can officially call it remission. This is also known as CR2(complete remission 2).

Also during these past few weeks, we have been counting down the days,
desperately wanting this cycle of steroids to be over! As of today, we have
11 more days! This is a new steroid for Erica and it is brutal, besides all of
the behavioral effects, Erica has gained 2 pounds in the last two weeks and
it is all in her belly. This has come on so fast that she has regressed in her
ability to walk and even crawl . . . she is just so uncomfortable that it is hard
tomove!  So, at this time, she just prefers to be carried and hugged . . .
whichwe can do.

We met with the Radiology Oncologist on November 2nd. While we had been
warned that it would be a tough discussion (and it was) . . . it was also a
plan and it was also more information which helped to fill in the blanks
between now and the time of transplant. Erica will undergo 8 days of
radiation, totaling 12treatments. Four of the days are once daily cranial
radiation and four of the days are "double days", in which she will undergo
total body irradiation (TBI)twice per day. This is a better treatment for
Erica because "hyperfractionated radiation therapy" has less long term
adverse effects. The other bit of unexpected news was that, because Erica
quickly returned to remission, she will not need to have spinal radiation.
This is great because the issue of stunted bone growth is almost nil.

We are still able to do this "induction" period at home, going in twice per
week for chemo/appointments/etc. We should get the new chemo schedule
for the next phase, "consolidation" next week. I am not sure if any of that
treatment will need to be done "in-house" (pro term for in-patient hospitalization)
(and yes, we are "pros"). We'll continue to keep you posted and you continue to
pray!!!

Thanks again for all of your love and support! We are forever grateful!