Journal Entry

Friday, February 28, 2003

When it rains, it POURS!!!!!

Good evening Friends,

What a week! While I truly thought that Grandpa's funeral and receiving Christi's bad news on Monday was going to be the low point of the week, it wasn't. Earlier this week, we learned that the girls had played in the playroom at Ronald with a boy who came down with the chicken pox on Tuesday. Everyone at Ronald was put in a QUARANTINE status on Tuesday. On December 28th Christi had tested positive for tithers meaning she had been exposed to the chicken pox so I wasn't worried about her and when they tested the brave little sister, Shayla on Wednesday afternoon I was almost positive that that would also be the case for her. I'm sorry and very frustrated to report that I was wrong!

Thursday at 5:00 PM we received the horrible news that Shayla did not test positive for tithers meaning she was exposed and she will probably come down with the chicken pox. We had heard from other parents that there was a shot you could get to minimize it. Shayla very bravely told Christi's two nurse practitioners as she fought back tears, "Mommy and Daddy want to keep me here so I'll get the shot so I don't make Christi sick." (Her little ears have overheard a lot of Mommy and Daddy's conversations! ugh!) Shayne quickly reassured little Shayla that she did nothing wrong and that this wasn't her fault and we were not sending her back. He was surprised to learn that she couldn't get the shot because the time period for it to be effective was over. We were told that she'd need to be separated from Christi for 28 days. In talking with other mothers out in the hallway at Ronald that night (Illegal during this quarantine, I know, but we all needed information!!!) I learned that others were being put up at the Medical Hotel near the hospital and that private donors were funding it. I assumed that this would be the case for us too. I thought with friends coming to help take care of Shayla this would be almost a piece of cake. (Well, as easy as anything comes to us lately.)

Well, Surprise! Surprise! This morning as I was at the hospital helping to prepare Christi for her day #4 of Round #7 high dose chemo, and they told me that not only do Christi and Shayla need to be separated because Shayla could infect Christi, but that Christi could infect others at Ronald because she was also in the playroom and that SHE needs to leave Ronald too! What?! I was shocked!! The doctor and nurses and social worker explained to me (many times! I had LOTS of questions and kept calling back to Ronald to vent on poor Shayne trying to entertain Shayla and trying to get to the hospital himself!) that even though Christi showed signs of tithers in December, since then she's had 3 high dose rounds and 2 of them being high dose Cytoxin. She had virtually NO IMMUNE system whatsoever. It's been totally shot down. She has no protection and she was also with the little boy in the playroom last weekend. Furthermore, they told me that if she comes down with them it could prove fatal.

Like this wasn't enough. There's more - she's not allowed to be in the pediatric part of the hospital so we'll have to have her treated at the urgent care center (emergency room of Sloan) only and when she's admitted due to fever/low counts and now possibly chicken pox, she'll have to be on an adult floor - no where near pediatrics! I know the big thing is she can die from this, but I'm also thinking we're going to kill each other without the playrooms of the hospital we've come to really depend on! ugh! ugh! This totally stinks!! Imagine it - Christi sharing a room with an adult cancer patient! Well, that certainly ought to "cure" the adult patient or at least have them begging to be sent home - sharing a room with Christi. (Smile)

So as I write this update tonight, Shayne and Shayla should have arrived at his former boss's brother's home somewhere in New Jersey. They've never met each other, but Dave has been so sweet to us. I hope Shayne calls soon to tell me that they caught a cab and all is okay! Christi must leave here by Monday. On Monday, Shayla and I will stay at a friend's apartment (Thanks, Riva!!!!!!!!!!! I do not deserve your kindness!!!!) and Shayne will be with Christi at the Medical Hotel. They permitted us to keep our room at Ronald. (Praise the Lord! I don't know how we would have ever gotten all of this stuff out of here or where we would have stored it!) A private donation group will pay for the Medical Hotel UNTIL Christi is admitted. Then they will no longer do that as they do not take care of siblings, only patients and Christi's housing will be the hospital. This week we'll have some time to work out details, but after this coming week my dearest friend, Becky will come out and my sweet teacher friend, Caroline after that so they'll be able to keep Shayla in hotels until this latest crisis is over. (I keep looking for the Hidden Camera! Certainly I can take not much more!!! As I was passing Shayne and Shayla this afternoon I yelled to Shayne while giving him the I LOVE YOU sign language sign, "Someday we're going to laugh about this and wonder how we even made it! We're going to make it, don't worry!!" Please God, see us through!!

The most fabulous social worker and wonderful person, Diane was with us and almost in near tears herself today when it sunk in with her as to why we couldn't just send Shayla home. Shayla just arrived. We will have no choice but to send her back when we go to Philadelphia for treatment soon and also when (if, please merciful God!) we make it to Christi's transplant. No siblings are permitted even at Ronald then. So soon Shayla will have to go back for about 8 weeks or so. This has been incredibly difficult for her to be away from us and has brought Shayne and I to tears time and time again. The Thomas Team being reunited was, without a doubt, the best possible medicine for all four of us! So, we're hanging together - even though we're isolated from each other for a few weeks and are going to have some rough times ahead. We shall get through this. The devil will not bring us down! We shall prevail! We shall because of the grace of our Father and of our tremendous support system you've all provided us with! May God wrap His loving arms around you and yours and keep you safe! Thanks for all!


PS: Christi's resting peacefully as I type. She tolerated this round very well and will just be on maintenance IV hydration fluids in her backpack this weekend. She vomited four times today, but didn't have any other problems. She quit eating yesterday, but I'm making up for that as I eat everything I try to tempt her with. (smile) See...............I still have a sense of humor! The devil will not get that either!!!! Goodnight sweet friends, family and strangers! Thank you!!