Latest on Halli

I know that I am terrible at keeping up on this blog, so thank you for taking the time to check it out anyway! Many people have been asking me how Halli is doing, so I would like to let everyone know what the latest developments are. Since my last update, things have been very up and down. Halli has had a few relapses. Her pattern seems to be this:

When she relapses, she'll start retaining fluid throughout her body and gaining weight because of that. She also gets very swollen and puffy which can be painful. When this goes on for a week or so, we put her on the highest dose of steroids. After about 8-10 days, she'll respond to the medication and lose the fluid. We then follow a schedule to begin tapering her off the steroids. This process takes a couple of months. It seems that as we lower her doses, she has another relapse, and we start all over again.

It has been a year now, that she has been on the steroids without any break. The doctors want to try a new medication to see if she can go for longer periods of time without a relapse. We have decided to go ahead and try this. The new medication is called Cyclophosphamide. It will be given to her for 12 weeks. She will take it in pill form, daily. Some of the side effects are; thinning hair (although I don't think it will be noticeable, and it will grow back), lowered white blood cell count (this will be monitored by weekly blood work and is Halli's least favorite part), there are a couple of other risks involved, but they are not too much of a concern with the small dosage she will be taking.

We are hoping and praying that this medication will be able to help in some way. We probably won't be able to tell if it has helped until the end of the treatment, which should be the end of this year.

As usual, Halli has been strong and brave through all of this. Thank you for all of your prayers, support, and concern. We love you all!

What's in a name?

There are many nicknames in our family. Ki-ki, T-dog, Sweet Baby James, Munch, Ghostrider, Hal-Gal, Boo, Fefer, just to name a few. The other day, Boo informed us that she wanted her name to be Sam. Blake thought that was pretty funny because when I was pregnant with her and we were thinking of baby names, Samantha or Sam was one name Blake wanted for her. Anyway, everyday she would remind us to call her Sam; and so we obliged! I called Sam to breakfast in the morning, kissed Sam goodbye and sent her to school, I even sent her to play-group with Sam on her lunch sack. A couple of days ago, Sam came home from school with a paper she had written in class. She had proudly written Sam on the line for her name. Even the “S” was backwards! Next to Sam, her teacher had written in red ink... “Faith”. I showed her the paper and asked her if her teacher had said anything to her. She proudly said, “Yeah, my teacher held up the paper and said, ‘Who wrote Sam?’ so I raised my hand and told her that I did! It’s my new name!” “Well,” her teacher told her, “you need to write your real name.”

As I thought about this exchange with her teacher, I was reminded of what her real name means to me. Faith. When I was trying to think of girl names, this was the name that came to my mind and wouldn’t leave. I knew that this was to be her name. I resisted the thought at first because I was worried about the religious connotation behind the name. Would she be teased? In the end, I relented and wrote Faith on her birth certificate. After time, I grew to love her name. It fit her personality, and it fit what our family stands for in this ever changing world. As we have gone through the trials that have been given us this past year, I have thought about faith a lot. As I struggle with the notion of “Why do we have to go through this? Why does Halli have to struggle so much? Why does Heavenly Father not heal her?” I always come back to faith. I do know that He loves us. I do know that he knows things I can’t even begin to comprehend. I have to have faith. When I pray for Halli to be healed, I have to have enough faith to change my prayer to “Please bless us with strength to handle this.” I have to have faith that as we are in the refiners fire, he knows just when we will be made pure. It is times like this, that we are put to the test, and I feel myself, and our family draw nearer to Him as we strive to endure, and endure well.

In the meantime, we will continue to have faith. We will continue to endure, and I will remember that when Heavenly Father gently writes “Faith” in red ink in our lives, he is just reminding us who we really are. Despite what her teacher says, I will continue to call Sam to dinner. Until she decides to be Faith again, or maybe Boo, or maybe even Aretha.... you never know.

NY Pics

Easter Eggs

We recently took a trip to NY. It was the first time any of us had been there! We had a great time as we roamed the streets, trying to figure out how to look like "locals". Each day we got up and I spent a couple of hours prepping everyone to go outside for the day. As they lined up, I went down the line checking off all the necessary items.... Thermals, first layer of clothing, second layer of clothing, boots, coats, hats, gloves, scarves...then, when I was finished with Blake I could move on to the girls! The scarf that I bought for Blake was a great scarf, but we discovered one problem. Because he sports the mountain-man look, his "beard" kept catching the scarf and it was "shedding" everywhere! Every time I turned around, he would be standing there with fuzz stuck all over his face! After we finally got outside and caught our breath, we began the walk down the street. By about the second day, I thought we were doing pretty good at blending in. We knew (for the most part) where we were headed, and how to get there. As we walked down the street, I heard Blake say behind me, "We look like a bunch of Easter eggs!" I glanced around at everyone scurrying past and I noticed that they all had on black coats, scarves, gloves, and shoes. Then I turned and looked at the girls briskly following me and I saw that he was right! They all had on brightly colored coats, hats, cloves and scarves! I laughed and said, "It's okay fuzz-face, I'm sure we look totally normal!"

We saw many amazing sights while we were there including, The statue of liberty, Empire State building, the bull by Wall Street, ground zero, Rockefeller Center, Radio City Christmas Show, Wicked, Carnegie Deli, Museum of Natural History, Central Park, and much more. It was so fun to see the girls' faces light up at each new adventure, and to experience it all myself as well! We learned how to use the Subway system (that Boo says is the one you ride not the one you eat.) We also learned to be quick when the trains arrived when Halli got on the train and the doors closed leaving the rest of us on the platform. (Yes, she is still with us!) I lost my credit card, and we panicked for a bit, we got to try new foods and learned that we love Pakistani food! We learned that we should stay out of some stores when we have four little girls with us. (Ask Blake about that one) But most of all, we got to spend time together every day, and that was the best part of the trip. We grew closer, and laughed, and even shed a few tears. But we did it together, and that is what we'll always remember! And the people of New York will always remember the Easter Egg people with that Fuzzy face guy.

Update on Halli

Two weeks ago on Wednesday, was supposed to be the last day that Halli needed to take her meds. We woke up and gave her her last pill, feeling very excited to be finished. We also tested her urine for protein. We were supposed to be testing her a couple of times a week, but because she had tested negative for a couple of weeks, we got lazy. We hadn't tested her for about three weeks. When we looked at the test, her protein count was really high again. My stomach dropped. I began to kick myself for getting lazy as I didn't know how long it had been high. I immediately called her doctor at Primary Childrens. Because we were to be going out of town to NY for the week, he wanted us to come in before we left. As we met with him, he told us that he was a little concerned that she was having a relapse so quickly after being "off" the meds. Although, we did expect that she would probably have a relapse, we didn't think it would come so soon. We left the office with heavy hearts, and a new prescription for a second round of the steroids. We began her second round the day before we left to NY. We have been testing her urine daily to check the protein levels. (We learned our lesson and are faithful now...) As of Monday, her count has become negative again. So we can begin to taper her down again beginning next week. It will take about six weeks to taper off. I hope and pray that this time, maybe her little kidneys will keep working on their own. She has taken this all so well, hardly skipping a beat. She always gets up and leaves her "sample" for me each morning and has her bowl of "mush" to take her pills with. She is so brave and strong. It just breaks my heart to think of what she has to go through, yet she just keeps living from day to day; smiling and whistling all the while. I can take a lesson from her that no matter what challenges are thrown our way, we can just take it and keep on loving and living. As for now, we'll just keep praying that she'll respond to the meds this time. In the meantime, I'll just get up each day and whistle along with my little munchkin as we carry on.