Fun Photos

It has been awhile since I've shared photos. To be honest, it is hard . . . our little cutie doesn't look like herself. But this is how it is now, and she won't be puffy and furry forever . . . so I thought I'd just share some of the fun times and recent infusion room photos. Erica has recently discovered that sunglasses are cool, so everyone should where them--all the time--even her dolls. I included a picture from Cabo (no more pinching myself, I was there and I can prove it!). We have great friends who get us out and about once in awhile and most recently, Bob and I got out for a night in San Francisco . . .we had a blast!

Strong and Brave

Another drop in the dose of steroids today! We now look forward to Thursdays, waiting to get the call from Kay or Dr. Taylor, another 0.5ml drop! YES! Slowly but surely, we are creeping down and slowly but surely, Erica's little personality is coming back. I can see it more and more everyday, through the puffiness and hairy face, there she is . . . on her way back!

Other meds are dropping and her liver counts are inching back down as well. I can't quite keep track of the kidney issue, we are meeting with Dr. Taylor tomorrow . . . so more on that later. Tomorrow will be our third platelet transfusion of the week and we are keeping our fingers crossed that we can do less Infusion Room visits next week.

Erica had her physical therapy appointment today and I was so proud of her! The PT had her on the big therapy ball, rolling side to side and bouncing up and down. Erica was kicking her legs and patting her hands like it was a drum. I don't know if I've said much about the change in her gross motor skills but Erica hasn't pulled herself up or crawled in over a month. Her weight is just too much to carry and her feet and legs are so swollen that she can't even wear shoes. So to see her moving around and experiencing gravity was exciting to me. The PT said that there is no doubt that things will change when she begins loosing the weight (and I think we're close to seeing some changes in that department!).

It's been three months since the transplant; we did the GVHD thing, we have been on a medicine calendar that would make most heads spin . . . HUS and kidney function, platelet transfusions, and proteins. Post transplant has been difficult but it is all in the name of healing. Last weekend I spoke to several people who were hearing Erica's story for the first time and I was able to say, "my daughter HAD cancer" . . . and now it's gone. That was a relief (and it is still hard to hear myself say "daughter" and "cancer" in the same sentence).

Tonight we pray for Ellie, Emily and Sammie and all of the other kids who are fighting the big fight!
God Bless!

Rested and Tan

Erica continues to go into the infusion room three times per week. While the main reason is to receive platelets, she has also needed proteins to help her kidneys. The kidneys hit the radar last week when we began to notice swelling around her eyes, in her feet and hands. After the urine test, the labs confirmed the her kidneys were releasing proteins. This further confirmed the need to taper off of the cyclosporine. So the meds continue to go down and we celebrate with every taper.

We can see some changes in her energy and behavior. She seems to be more vocal now which is fun and she is very animated when she plays. The physical and speech therapist come once a week and we are really enjoying that process as we learn new ways to assist in Erica's development. I think it is also nice to have consistent visitors . . . for Erica and for me!

Ok, so I am excited to tell you that I just got back from Cabo San Lucas. My friend, Chris, qualified for this trip through her work and she was able to bring a friend. She brought me! An all-expense paid trip to Cabo, 4 days and 3 nights, sun, spa and relaxation . . . how could I turn that down? It was fantastic; the resort was wonderful and the company was SO FUN! I was nervous in the days leading up to the trip, this was the first time that I have ever been away from Erica overnight. I think Bob was getting a little nervous too . . . but he did great! He had to take Erica to the hospital and there was even some concern that she would need to stay overnight for some observation of her kidney function, but luckily they were able to go home that night and then visit Nana's house the next day. I think Erica is now a "daddy's girl"! I am so happy that I was able to take the break, there were a few cathartic moments . . . but I needed them, it's hard to let down when I am home, there is just too much going on. We had a great time and I am so grateful to Chris for inviting me, I kept pinching myself and thinking, "Am I really here?"

I got home Sunday night and I brought Erica in to the infusion room at 9am Monday morning! Nothing like getting back into the swing of things. But, I am rested and tan . . . and that makes a difference!

We will go in on Wednesday and Friday of this week. No understanding, at this point, of when we will be able to stop with the transfusions. Prayers are for Erica's kidneys, that they are relieved by the proteins and medication taper; for her liver, that it begin to repair and for Erica's continued comfort and increased mobility.

Happy Birthday Bob!

Day 83

Once again I am amazed by the support and love that surrounds us. Thank you for all of your kind and encouraging words and prayers.

We are doing better this week. We proactively scheduled three platelet transfusions this week so things should go more smoothly. Erica's medication doses are coming down (the ones the cause the liver toxicity, swelling, weight gain, and hair growth) and although we can't physically see any change, we know that it will reveal itself from the inside out. I look forward to the day that we look at her and see her comfortable in her own skin, moving and playing without pain or restriction.

We are getting closer and closer to being 100 days post transplant. 100 days is a huge milestone in the transplant journey. Many of the acute illnesses and side effects will take place within the first 100 days, after that, we won't expect any GVHD or increase in medications.

We are still required to be in the house at all times which can be hard on these beautiful days, but Bob and I get out at lease once a day and we have my mom, Nana, to thank for that. Nana comes over about three times per week and you should see Erica's face light up when she walks in the door.

Please pray for Erica's liver; her counts continue to show a great deal of toxicity. Please pray that the doses of medication to continue to taper down and as always, for her comfort.

Those Darn Platelets

We have been going crazy this week trying to keep Erica's platelet levels up. On Wednesday she started bruising on her tummy and legs so we called her doctor and he had us pack our bags. She and I stayed on the 7th floor Wednesday night; her platelet transfusion was done around 1:30 AM and we were released at 9:30AM on Thursday.

Being back on the 7th floor was very difficult for me. When we got there, we went directly to our isolation room (we haven't been on the 7th floor since before her transplant). It was just Erica and I in the room, waiting for our nurse to come in and I just broke down in tears. "I don't want to be back here, we are done with this place, this floor, these rooms." I could not have predicted that I would be feeling this way, but it was so powerful. Every room has animals painted above the door; depending on what nursing station you're at, you will have different animals. When we got in the room, Erica (as she always does), pointed up to the bunnies, as if to acknowledge them and say 'hello'. All I could think is, "I hate those bunnies."

It's been nearly a year and a half; we've spent over 200 days in the hospital (short stays, long stays, infusion room and the ER), can you blame me for feeling this way?

We went back to the infusion room today, Erica had a three hour transfusion and then we came home. She should be set for the weekend. We will go back three times again next week. The prayer is that the HUS subsides.

This journey has been filled with its ups and downs, this has just been one of "those" weeks. I am just ready for Erica to be off of the steroids . . . I want my girl back.

Thank you for your continued prayers.

Back and Forth

Thank you for all of your words of support and encouragement! We are so blessed to have such an amazing support system!

This week has been filled with ups and downs, we have been to the hospital three times for platelet transfusions and we will continue to go every other day next week. The reason that her system keeps loosing the platelets is because she has something doing on in her body called HUS. For once, there is something going on that I can't really explain! It tends to happen post transplant and it will correct itself over time. This is only dangerous in cases where Erica would bleed . . . hence the intensity of last week and the bleeding from the liver biopsy.

So we are back and forth to UCDMC and quite frankly, it is nice to get out of the house and Erica loves her time in the car. She is big into trees and flowers right now. She points to them and sniffs her nose and then says, "mmmm" (like, oh, those smell so good!). It's funny because we are looking at flowers in our back yard . . . from inside the house!

Personally it has taken this entire week to recover from last week. We were all very tired and with the blood counts continuing to look uncertain, there was just no ability to relax. I'll share that the main issue right now is getting off of two of her medications; the steroids and the cyclosporin. These are causing continued toxicity to the liver, as well as many other side effects. We dropped down the dose of steroids again this week and we are just praying that the GVHD stays at bay. Please pray that prayer with us!

Blessings to you!