Day 30

We took Erica to the doc again on Thursday and unfortunately the blood tests showed that there is another area of GVHD popping up . . . in her liver. It is at the very lowest levels and we are able to treat it, in fact, the levels may be back down by Monday. The problem is that the treatment is higher doses of steroids and believe me, the side effects are raging! The "little misses" is very emotional, very mommy-needy, super hungry and very puffy! We know that this is the best treatment and of course, it is better to have the GVHD destroyed but it's still hard to see her so disturbed (especially after all that she has been through).

In the midst of it all, her counts continue to rise. On Thursday her white count was 8.0 and her ANC was 6400! I don't know how high these numbers go . . . really, what is "normal"? I remember when we were in the "maintenance phase" (before her relapse) and we would celebrate when her ANC was over 1500. So this is good news and we continue to receive confirmation that the new marrow is doing a beautiful job of engraftment. Today we drop from 13 daily doses of medication down to 8, it is always exciting when when we get to take a med off of the list.

This weekend is the Children's Miracle Network Radiothon in Sacramento. We participated last year as the radio stations set up shop on the 7th floor of UC Davis Children's Hospital. Our family spoke to The Eagle (96.9) and yesterday the radio host read an email that we sent in with the update on Erica's October relapse and January bone marrow transplant.

We didn't share this with The Eagle, but thought it was worth recording . . .Erica only says about three words, "mama, dada, and nana". But this past week she added a fourth . . . . "lasagna". I am not joking around here, she says, "la-nna-nna". Of course, she's on steroids and FOOD is her favorite topic so it is only appropriate that she throws out a word like "lasagna"! (and Thank You to our friends who brought us the lasagna~it was great!).

We are 30 days post transplant and relatively speaking, Erica is doing great! We will go to the hospital on Tuesday for some IV Antibiotics and a visit with Dr. Taylor. Our prayer is that the liver levels have dropped and that we can lower the dose of steroids as soon as possible.

GVHD

Monday morning, Erica woke up with a rash that covered her face, head and neck . . . the first signs of GVHD. Graft versus Host Disease basically means that the "graft" (the new marrow) is attacking the "host" (in this case, Erica's body) because it is an immune system and attacking anything that is "foreign" is what it is supposed to do! The new marrow just doesn't feel at home quite yet and that is ok, it is right on schedule to pop up with a little 'home sickness'. Does that make sense? I've had a glass of wine . . . not a good time to be explaining a medical phenomenon.

Erica saw the doctor on Tuesday and they upped the steroid three fold for a short period of time. This should take care of the acute GVHD phase and God willing, that will be the last we see of it. In the meantime . . . she is on three times the steroids which is making her uncomfortable, hungry and very 'mommy-needy'.

Here is a fun note to share, Erica finally embraced the concept of the mask! I began explaining to her that if we go outside, she needs to wear the mask (I repeated this multiple times). Finally, she nodded her head like, "ok, I got it. let's do it!". So, the mask went on and we got in the car to go see the doc. We have another appointment tomorrow so we'll see how it goes but I considered it a victory (especially considering that the mask was still on her face when we got to UCDMD).

That is the update for now, we'll get her blood counts again tomorrow and we fully expect them to continue their climb!

Praying BIG

It is hard to believe that we have been home for over a week. We are getting adjusted to life at home; it is a bit different given that Erica is home bound and unable to go outside. I can't just make a run to the store or go for a walk on these sunny days . . . but we can make the best of our indoor days. This weekend my goal is to build more of a schedule for our days, in between meds and home health appointments, we are going to have music time and "tunnel time", perhaps some art and story time too. A year seems like a long time right now, but before we know it . . . 2009!

Drum roll please . . . Erica's white count is 3.3 and her ANC is 2500! These are amazing numbers. Her actual immune system is still completely compromised but her new bone marrow is working, it is engrafted and we just think her donor must be quite the stud!

We have a bible verse on our fridge . . . my Auntie Pam sent it to us when Erica was first diagnosed, "Lord God! Behold, thou hast made the heavens and the earth and by thy great power and by thine outstretched arms, nothing is too difficult for thee."(Jer. 32:17). It is only recently that I read that and realize that in Erica's case, we asked for the biggest possible blessing, A MIRACLE! And that is what we received. So many times along the course of Erica's treatment we would pray for smaller blessings, like her liver counts and for her comfort but when it came time for the transplant we prayed for a miracle . . . it's ok to pray big, bigger than anything you think possible and in that, you realize that there is no prayer to big for God.

I only share this because there really is no other way to express where we're at right now. 99% of bone marrow transplant patients would still be in the hospital right now. Erica is home and there have been no fevers, no signs of GVHD and no other major complications. It truly is a miracle. And I believe it's because that is what we all asked for! Thank you for praying BIG!

Today, just as Dr. Taylor predicted, is six weeks post cranial radiation and there seems to be some fatigue setting in. It's 1:00 and Erica is now taking her second nap of the day. This should last for about a week and then she should be back to her energetic self. In general, BMT patients experience many periods of fatigue throughout their life, I guess it is one of the more chronic side effects of the transplant. And there are others . . . we'll deal with as they come.

Thank you for your comments; your words of encouragement mean so much to us. If you haven't already, please take 2 seconds to create an account and post a message!

The Team

Being in the hospital, all you think about is home. Being home, these last few days, I've thought a lot about our time in the hospital.

When you are there as much as we have been, it becomes a very unique place filled with very special people. For instance, the cleaning crew . . . we have had the same rotation of cleaning staff throughout the past year. We know them by name and always thank them for the job that they do. In the BMT Unit we had the same lady almost every day; she took great pride in the fact that she was assigned to the BMTU as the rooms required extra TLC. Erica got to know her and they would blow kisses as she left every day.

With the nurses, it probably goes without saying, there is a very special bond. We were nervous about going up to the 8th floor after knowing all of Erica's nurses from the 7th floor. Plus, the 7th floor is all pediatrics where as the 8th floor was adult oncology and the BMT Unit was mostly adults. Our frets vanished quickly when we met our team of nurses on the 8th floor. From day 1, they were WITH Erica . . . her treatment plan, her ups and downs, her pain, her laughter, her "wheats", her weight, and her family. We hardly ever had to push a button to page them, they knew when the flush alarm was about to go off and they checked on us all the time, even when we were sleeping. Not only were they Erica's care team, they were my care team too. I tried to take photos of all of them, in the pics we have our primary nurse Barb, Megan, Denise (they were our day team) and then at night we had Karen, Connie (we'll get pics someday), and Charlie.

I have an overwhelming feeling of gratitude and respect for these people. I've been in the arena of healthcare for my entire career and never have I fully understood that nurses (the good ones) possessed such intensity, skill, and compassion. God has a special place in heaven for nurses; I'm convinced of it.

I've just thought a lot about how well things went at the hospital and how Erica's room had such great light and energy in it. Maybe it is because each person that walked in cared so much about our little girl.

We're at home now and things are going very well. Erica's white count is up to 2.1 and her ANC is 1300 . . . . a very long way from zero! They are still watching closely for signs of GVHD and kidney function. We were told today that at six weeks post cranial radiation is when a patient goes through an episode of intense fatigue for about 1 week. Erica will be at 6 weeks next week so we'll be watching for that . . . although we all know that Erica is writing her own book on this!

Prayers are for Erica's continued strength, a steady climb in her counts, no fever, good liver and kidney counts and days filled with love and laughter.

Home Sweet Home

Yes! We are home and it feels great! Erica did not waste any time getting into the swing of things. She loves her new "kitchen" and her ol' fav' . . . the scooter. The "goodbyes" at UCDMC were very emotional. The docs and nurses had a 'Going Home' party for Erica; we sang and danced and they bought Erica a band of instruments (Erica's favorite is always the drums). We had cake and talked about how well Erica has done over the past year and a half. Being discharged 15 days post transplant is a UCDMC record for pediatrics. Dr. Taylor laughs at me when ever I bring that up . . . he thinks I am competitive . . . hee-hee!

So I just wanted to share some photos tonight. I will fill you in on the post-transplant stuff another day. Oh, but I must say . . . I forgot how nice it was to sleep through the night! Ahhh.

Going Home!

Can you believe it? We are going home tomorrow. Erica's counts have continued to improve and she is meeting all of the requirements for discharge. My cheeks hurt from smiling so much, it is just so amazing that she has recovered from this stage of treatment so beautifully, or, "swimmingly" as Dr. Taylor would say.

Our home is ready for Erica's return . . . the house has been cleaned from corner to corner (thanks to our dear friends), the carpets have been cleaned, the rugs have been sent out for cleaning, bedding is changed and we have a big box of blue booties to cover our shoes when inside.

What does this all mean? Erica's new marrow has engrafted and it is beginning to produce all blood products. We were prepared to stay at the hospital for months because that is how long it normally takes for BMT recovery; largely do to the radiation and chemo. Thankfully, Erica recovered quickly. Now we look for signs of GVHD and infection; both are likely. We will see Dr. Taylor once per week for the next several weeks and Wendy, our home health nurse will resume visits twice per week. Erica will need to stay inside at ALL times for many, many months. She will not be able to be outdoors or around other kids for about one year. Soon, we will have speech and physical therapists at our home to work with Erica so that she can quickly catch up to appropriate developmental levels.

Dr. Taylor said to expect 1-5 hospitalizations over the next three months. Ok . . . but we'll shoot for NONE! So, the next chapter is yet to be written, we'll just continue to follow Erica's lead.

I read back over the last several blog entries last night and honestly, I don't think that I can fully embrace all that has transpired over the last few weeks. My mom and I were talking yesterday about how we just found the "emotional middle" and tried our hardest to stay right there . . . at all times. In order to find that middle ground, we had to come to accept the best and worst that could happen. I don't know that I'll ever be able to understand how I came to any terms of acceptance . . . with Erica's illness, her mortality, or the scope of possibilities that were laid before us. That must be something that is guided by faith.

For now, we celebrate! The nurses are planning a party (cake and all) for tomorrow! While they are all happy to see her doing so well, they will surely miss her sweet face, (the rest of the patients in the BMT unit are adults who don't take their meds quite as well as Erica!). Another phase completed, another deep breath, another step closer to a full recovery!

Thank you for your prayers, cards, emails, and well wishes. We could not do this without all of the love and support that surrounds us. I believe, beyond a shadow of doubt, that Erica is going home tomorrow (weeks ahead of schedule) because of the power of prayer.

Engraftment

Erica is doing great, here are some pictures from her big 1.5 Birthday Party! Her white count was up again today, 0.5 and her ANC is 110. They took her off of the morphine and they dropped one of her blood pressure meds.
We are all amazed with her progress. Today Dr. Taylor said that we can officially called this Engraftment! It is happening, answered prayer!

Champagne

It is hard to describe the feeling, I visualize it like champagne with a lid on it . . . energy, excitement, fun, celebration, yet contained. That is how I felt yesterday as we got the news that Erica's white count had gone from days of o.1 to 0.3. I know, it seems so small, but when it comes to blood counts it means that something is happening. Her ANC went from 0.02 to 0.07; something is definitely happening. I wanted to just break down and cry and then I thought about how sometimes there are blips in the lab or with the blood sample . . . hence the feeling of champagne with a lid on it.

As the day went on something shifted, Erica was not just playful and content but she was beeming with joy. She was vocalizing and laughing and moving, even standing in the crib. "This is it", I thought, "her new bone marrow is starting to work." And then, I just starred at her and she starred back at me with those wide open eyes and I said to her, "we get to keep you". That is when I exhaled for the first time in months. Day to day, I don't think I realized how scared I was because it was just that, day to day. Now, there is a calm about it all, a different type of confidence in her full recovery. Maybe, before, it was optimism and now I feel like God has placed His hand on my shoulder . . . she will be ok.

This morning her white blood cell count was 0.4 and her ANC is 110. Again, all positive signs! This is amazing, there is no way that I can express how amazing it is, this is only Day 11. Typically it takes 20-30 days to see any movement in the white count. Not only that, but her mouth sores are healing and she is eating, they have reduced her morphine by 1/2 and they expect to 1/2 it again today and still, no fever. Are we out of the woods? No, but we can see our way through.

Erica is 1 1/2 today. Nana planned a little half-birthday celebration for this afternoon . . . we will celebrate her 18 month milestone as well as the milestone of her cell production.

Doctors and nurses will temper our excitement, only out of protection. They will tell us that she could still get a fever/infection and that we really need to wait until there is a big spike in her ANC. This is also the time in which Graft Vs. Host Disease (GVHD) would kick in. That's ok, that is their job but I made the decision to share this amazing news because there are just too many bubbles in this champagne . . . I had to take the lid off.

Prayers . . . first Rejoice in this news! Pray for minimal GVHD, no fever, continued production of neutraphills, stability of her blood pressure, and comfort without the morphine.

Rejoice!

The Bili

Just a quick post to report that the bilirubin returned to a normal range this morning. This is great news and indicates that the spike was more connected to the last blood transfusion versus any potential liver disease. Yeah!!
Today is a good day. The doctors decided to reduce the level of pain medication because she is in such good spirits. More to report later. Thank you for all of the prayers for a healthy liver!