The Full Story

As I sit down to write about our hospital experience from this past week, I find that it is hard to come up with words that capture the escalation and intensity.

The plan was to "drop in" for a liver biopsy, get a platelet transfusion, stay for the night under observation and go home the next morning. The first red flag for me was when the doctor came in prior to the biopsy to tell me that this was a "high-risk" procedure and that I needed to be aware of this fact . . . that 5% of children, Erica's age, bleed internally after the biopsy. Ok, well, I knew that the biopsy was necessary and 5% was, well, 5%. We had beaten better odds before!

After the biopsy, I was called into the OR to comfort Erica as she woke up. My job was to keep her on her right side for two hours so that there would be internal pressure placed upon the liver to clot any bleeding. She did a great job with that and then we were taken back up to the 8th floor. Erica had a yogurt and some apple sauce and then wanted to lay down for another rest.

A couple of hours later, Erica got sick. As I was cleaning it up and washing her face, she starred at me and then I felt a rush of adrenaline. I asked her "are you ok?", she just starred at me. (If you know Erica, you know that she always responds to questions). I started to cry, because I knew . . . "you are bleeding, aren't you?" I noticed that her skin was very pale and I just knew it was bad. I called the nurse in and told her, as if I was the authority figure, "you need to take her blood now, we can't wait another hour". She was so respectful of my feelings, I told her that I would normally not approach her this way but that I knew she was bleeding inside. She took that blood and ordered it "Priority One" (faster than "stat"). Within 10 minutes she walked back in and said that Erica's hemoglobin was 6.6, less than half of what it was 5 hours prior. She told me that the Rapid Response Team would be in within two minutes and that she would need an emergency blood transfusion and ultrasound. Her blood pressure was dropping when the team came in, her belly girth had increase by 8cm. They needed to stabilize Erica; they gave her a good amount of fluid at a very fast rate to bring the heart rate up, then they started the blood and in the meantime, I called Bob to tell him what was going on . . . he was on the next flight home from LA.

Several doctors came in, the ultrasound was completed, there was a shift change with our nurses, and Erica was on several monitors . . . I was just trying to stay present. Things did calm down as her vitals were stablizing, the ultrasound showed that Erica's entire abdomen was filled with blood. Our nurse, Charlie, brought an amazing sense of peacefulness into our room and I finally took a deep breath.

Erica's pain was treated with morphine and she was most comfortable laying beside me. There were several doctors in the room that night but we were most happy to see Bob, he got in at 11pm. Charlie made Bob a bed in the family room down the hall and we all just tried to get a few hours of sleep.

Without going into all of the medical details I will tell you that everyone was scared; us, her doctors, the nurses. It continued for next 24 hours as well; labs were taken every three hours as the liver continued to ooze blood. We stayed a total of three nights and were released on Saturday afternoon.

Erica's doing well at home. She can sit up without pain and her little personality is back. The next blood draw is tomorrow morning, we are just hoping that the numbers look good.

Last but not least . . . the results of the biopsy! There was no detectable GVHD. The liver issues turned out to be a result of drug toxicity. This is great news because we can look at the drugs and perhaps replace the drug(s)that casue the issues. It means that the extent of her GVHD was in the skin and has already healed. The taper in the steroid medication has begun and if all goes well, the dose will continue to drop over the next few months.

Thank you for all of your prayers, we always feel completely surrounded by your love and support. Our little girl has been through so much, so much more than a baby should ever endure . . . her eyes told me that she wasn't ok that night, she knew things weren't right . . . I remembered that she looked at me that way on December 12, 2006.

Lord, please heal Erica's liver. Take the bruises and the pain away, bring her comfort and vitality. Lord, please allow for Erica's precious body to safely absorb the blood that now fills her abdomen and keep her safe from any additional complications. We pray for good blood and liver counts tomorrow and for continued strength for our family. Amen.

Biopsy Update

Hi Everyone---Quick update from Krista on Meg & Bob's behalf. Meg & Bob don't have computer access in their hospital room, but promised a full update tomorrow.
In the meantime.....Erica had her biopsy yesterday morning about 10 am. By mid-afternoon, Megan noticed that Erica was in pain and pale. Megan asked for her blood counts to be taken asap and the results revealed that Erica had lost half of her blood from internal bleeding. Immediately, a response team came to Erica's room to help stabilize her. After much commotion, Erica was transfused and stabilized. She continues to be monitored--and is on a morphine drip to ease her pain. Megan and Bob are with Erica now and their hope is that they will be released tomorrow to go home. Erica is stable and they were able to complete the biopsy. Meg promises to post as soon as they are home.

Liver Biopsy

We're off to the hospital tomorrow morning for the liver biopsy. We check in at 6AM and then Erica will receive a platelet transfusion. The surgery is schedule for 10:20AM.

This will, hopefully, be a quick procedure and an easy one night stay. On the bright side, we will get to see some of our great nurses and friends at the hospital. It's been two months since the transplant and of all reasons to be back in the hospital, this is an ok reason!

Please keep Erica in your thoughts and prayers. I hope to have some results before we leave on Thursday. The results that we want to see are GVHD related; we don't want any "surprise" diagnosis. If the GVHD is confirmed then there may be some medication changes but, all in all, it should subside just as it did on her skin.

Thank you for all of your love and support! Best wishes for a beautiful spring!

Happy Easter!

The Liver-Part 3

Huge bummer . . . the counts came back this afternoon and all three levels are elevated. The GGT was over 600 and the threshold for the liver biopsy was 500.

So the plan is to stay on top of the counts by getting a blood draws on Saturday as well as Monday. Most likely, Erica's biopsy will be on Tuesday or Wednesday with an overnight stay in the hospital. The reason for the biopsy is to confirm that this is liver GVHD and not any other type of liver problem . . . they just don't want to jump to any conclusions.

Erica seems to be feeling well, she was full of giggles today! The thing is, she just isn't herself. Poor girl has a HUGE tummy and her face is SO puffy. It is hard for her to breath, hence the blood pressure medication. And the other thing . . . the anti-rejection med is known to promote hair growth. Well, Erica has dark hair all over her body and it works overtime on the eyebrows. Oh, it all goes away when the meds stop and I am, by no means, worried about these things, I can just tell that she is uncomfortable. I look forward to the day when she is off of the steroids and is feeling comfortable in her own skin.

Prayers are for reduced liver enzymes, no more GVHD and for her comfort.

The Liver-Part 2

Just a quick update:

Erica's blood counts were taken on Saturday and today, Monday. The results from Saturday were hard to hear, the liver chemistries had again doubled. I spoke to Dr. Taylor Saturday night and he projected increasing counts through the week and therefore opted look at the surgery schedule for Tuesday or Wednesday, pending the Monday counts.

Today's counts are mixed. Two of the three chemistries went down by about 10% and the third (GGT) and most important, went up a bit. So, I am now waiting to hear from Dr. Taylor to discuss, perhaps, the possibility of holding off on the biopsy. Hopefully, the decrease is a trend and by Thursday, all of the counts will have gone down . . . and we'll all take a deep breath!

I'll post again when I know more.

The Liver

There are certain phone calls that force us into the moment; what ever else is going on at that time suddenly takes the back seat. Last week we got a voice mail from our nurse coordinator, her voice had a serious tone and she actually said that the blood counts didn't look good. She never says that! When we called back, she explained that Erica's liver counts were more than doubled what they've been in the last several weeks and that per her conversation with Dr. Taylor, this was almost certainly GVHD of the liver. These numbers have her moving from Level 1 to Level 2 GVHD (a more moderate form).

The nurse will come over today to draw blood again, the counts are expected to be even higher than Thursday. Dr. Taylor explained that in order to properly diagnose the GVHD, Erica will need to have a liver biopsy. This will require her to stay in the hospital for one night after her surgery center appointment. The major concern is bleeding and so they keep her over to monitor any sign of internal bleeding.

So the week ahead looks different than it did just 48 hours ago, but that is how this journey goes. We are concerned, but not overly anxious. This, like the skin GVH, is very common. By the way, her skin looks so much better, the itching has subsided and we expect her to be healed up within the next few days. The prayer now is that the liver GVH follows a normal course, that in a couple of weeks, it will return to normal. At the core of it all, the prayer is the Erica's new bone marrow relax into her body, that it learns that there is no need to attack this precious body, that it is at home!

Day 48

Level 1, Stage 2 GVHD is still present. The rash has changed over time but it is still there, head to toe. There are a number of things that we are doing for the itching, so Erica is more comfortable now.

The weeks are still busy with home health and now speech and physical therapy. We also go to UCDMC for a visit with Dr. Taylor once a week. While the actual blood counts look good, our focus has shifted to the chemistry panel. This tells us where her body is deficient, how her liver is doing, how her kidneys are functioning, etc. Based on these results, medications get altered and then we wait for the next blood draw.

Personally, I am a little stuck between processing what we have just been through, living a day at a time, and being excited about our future. I was polishing our leather chair with a leather treatment last weekend and I began remembering how many times I held Erica while she vomited all over me . . . that was the chair I always breast-fed in and often times, the chemo just made her too sick, and she couldn't hold down her milk. Day after day this would happen, sometimes multiple times a day. Our minds are programed to move past the difficulties, sometimes blocking out those things that are most difficult. There have been chapters of this journey that are just that . . . too difficult. So then I spend some time in the day-to-day and Bob and I will talk about future vacation plans . . . wondering what type of adventures Erica will most enjoy! Perhaps I am explaining a bit of a dance~accepting what has happened (the music), being present (knowing the steps) and looking toward the sun (chin up). More to come on that . . .

Goodnight.

Dermatol-itchy

Monday was a tough day. We started out with a fairly wide open day, just a visit from our home health nurse and a 'play-date' with Nana. Well, when Wendy got to our home, my chief concern was Erica's itchy, red skin . . . it quickly turned into her concern as well. She paged Dr. Taylor and before long we had orders to be in the Infusion Room by noon. So, when Nana got here, I told her that we had a "field trip" planned for the day. Poor Erica, so itchy and red!

Dr. Taylor examined Erica and let me tell you, the rash was all over her body with little raised bumps. He suspected more GVHD but because we started a new med and received two IV drugs last week, he referred us to the Dermatologist for a biopsy. A few hours later we were in the office of Dr. Mumm and she did a "punch biopsy" of Erica's back. After a couple of stitches we were on our way home.

Erica was so brave all day. She knew that everyone was looking at her skin and she would point to were it itched the most. I think she was happy that her skin was getting some attention . . . as though she knew that we would do our best to make it better quickly!

The report came back today which confirmed a Level One-Stage 2 GVHD. Basically this is the second skin reaction that she has had and "Level One" means that the GVHD has stayed in the skin versus the internal organs. Steroids are back up . . .way up and she is now taking another drug to further suppress the immune system until the skin is healed.

Do you love the picture? She is doing really well with her mask. "We go outside, we wear the mask. OK?", Erica nods, "ok!". She is a doll, an absolute joy to be around . . . even on steroids!

Angels

These are the angels in Erica's room! Each one is from someone special and I like to think that each one represents a different element in Erica's life: hope, strength, courage, health, etc. The concept of angels is interesting to me, I've thought so much more about the angels that I know in heaven. Over the past year I have prayed more that I ever have before, but I also began recruiting help from the special people that have moved on from their life on earth, who are now in heaven. It is so different than prayer, I talk to my friend Shannon and her mom, Carol; to Dixie and my good friend Rudy; and to my Nana. It is like saying, "hey, I know you are up there, please give God a good word for us, I know that if you were here you would say special prayers for my little girl and I know that, even now, you are praying over us, crying tears for us, sad that we are going through this rough time but faithful that we will make it through. Thank you for the special person that you were to me in my life, and thank you for being a special angel to Erica". Yeah, I admit it, I really enjoy the access that I have had to these angels, these five are my five.

Writing this blog, it is hard not to think about what people, who are reading this blog, may think or imagine about our family or of me but I write from the heart and my motivation is Erica. I hope that someday this testimony is a gift for her.

I want to share some of my favorite stories . . . these are the ones I think about at night, the ones that make me smile. All of these stories are about children that pray for Erica. Reese is 3 and her mom and dad pray for Erica at night and if they stop the prayer without praying for Erica's donor, Reese will remind them, "what about the special donor?". Little Elliot is 5 and asked for a picture of Erica for her birthday so that she could see her face when she said her prayers at night. Blake is 4 and when he was sick last week his dad said prayers that his "bug" would go away and then said "amen", Blake said, "but dad, what about baby Erica's bug, it is taking longer to go away than my bug" (his dad got tears in his eyes), "yeah buddy, let's pray for Erica's bug too!". Our nieces, Emma, Sarah and Allison go to Erica's blog all the time and Sarah shows her friends at school . . . lately they have been brain storming about how Erica could swim this summer, even though she can't go outside. They came up with a blow up pool filled up with little plastic balls! Lauren and Jimmy say "God bless Erica" before dinner and get this . . . Bryce and Allison sent Erica the things that make them feel better when they are sick. Bryce sent some of his Pokeyman cards and Allison sent pink nail polish (because painting her nails always makes her feel better!, she is 5). These are my favorite stories and I am sure that I am forgetting some of them. These are too priceless not to share; these are our angels here on earth!

Erica is doing well. Her liver counts have stabilized and her steroid dose has gone down a little. She still has GVHD and her skin is still very itchy from the TBI. The other thing that she has going on is called HOS. Basically her system is shedding immature red blood cells, at a very fast rate. The concern is for her kidneys . . . can they process this waste, at this speed? So far, yes, her kidney function is good. The other concern is the red blood cells . . . is her marrow making enough mature red blood cells? So far, absolutely! Her red blood cell count has been that of a normal child, 11.0. She is doing great. What is happening in her body right now is all normal for a post-bone-marrow-transplant patient. Please pray that the HOS naturally goes away and that her liver and kidneys stay strong. Also, she is so itchy, pray for her comfort . . . or for more lotion. She signs to us that she would like lotion on her skin about ten times a day! Hey, whatever works!