She's been feeling pretty good for the most part. She finished the third cycle of Accutane on Friday. This round really did a number on her skin, not only on her face but all over, and she had some pretty bad headaches and hip/knee pain. The headaches seem to be gone but the leg pain has lingered. Hopefully that will disappear this week too. And hopefully her skin will start healing up before we have to start the next cycle on the 23rd. I've been trying all kinds of creams on her but even the ones that shouldn't sting do. The only one that doesn't seem to bother her is Aquaphor. And since her skin is so dry she hasn't been too keen on putting sunscreen on (some of it stings on the really dry cracked areas) so I've been trying to keep her in when the sun is the strongest. She still gets wiped out pretty easily when it's hot so there hasn't been too much arguing when I tell her we have to go in.
As most of you know, Lauren's birthday was yesterday and we had a great party/BBQ in the backyard to celebrate. We had a small kids party (butterfly theme) in the morning and the kids had a blast! Then in the afternoon Bill's parents, my parents, Aunt Nean, everyone from the morning party plus more friends and neighbors came over for a BBQ. Lauren partied from 11 am til 10 pm without a nap! And she really kept up with the bigger kids. They played in the sprinkler, with water balloons, water guns, in play tents & tunnels, on the swingset. Basically they ran around with all the neverending energy that only kids have! It was great to see Lauren running around having so much fun. Thanks everyone for helping us celebrate!! And a special thanks to Sharon for all her help, especially for making the great butterfly cakes and cupcakes.
We had another really fun event last Sunday too. We did a Passport Potluck Dinner. There were five families and at each of our houses we had a different part of the meal from a different country. We had drinks from Mexico, appetizers from China, salad from Greece, entre from Italy and desserts from Ireland. The idea was for the kids to be able to try different foods. After they tried the food from each country they got a sticker added to their passport and at the end if they had a sticker from each country they got a prize. The kids did great and we all had a ball! Lauren was really happy because we had the chinese food at our house. Actually Lauren carried her fortune cookies with her and ate in China at each house!
Ok now for the quick medical stuff.......
We went to the Valerie Center today for checkup and counts and everything looks good. Lauren's BUN (a measure of kidney function) was slightly elevated again ( it was slightly up right before the last round of antibodies) But we think it might be due to the Accutane so we're going to check it again right before and right after the next cycle and see what it does. Dr Kline is not overly concerned at this point. We also drew blood for the HAMA test today. I should have those results by Thursday morning and then we'll know if we have to go back to Sloan for round 5 of antibodies.
It's been over a month since our last visit so it was nice to see familiar faces again. Two of Lauren's friends, Susan & Billy were in for checkups too so we got to visit with them for a while. Unfortunately Lauren's craving for a Happy Meal was so great that we didn't get to visit our favorite nurses on the floor :( Sorry guys! I promise we'll catch up with you next time!
We are so thankful for how great Lauren is doing and for how good she's been feeling. And writing about this upbeat news has been easy. Unfortunately we did receive some sad news that is not so easy to write about. During these past two weeks, two children that we had met during our visits to Sloan lost their battle with this terrible disease. Andrew who was 5 and had a great smile. And Rachel, who I called "the little lady", was Lauren's roommate during their first round of antibodies. She would have been 5 this year. (There's a picture of Lauren & Rachel on the photo page). Please say a prayer for the families of these "little angels".
As always, Thanks for checking in on us and for keeping us in your prayers
Thursday June 14 - Well the results are in and Lauren is still HAMA negative, so we get to do another round of 3F8 antibodies. Round 5 is scheduled for July 9-20. At least this time we don't have to do the gm-csf shots the week before. Lauren's really happy about that! We still have another cycle of Accutane to do too before we go back. Her skin is starting to look much better since the last cycle finished and her leg pains have gotten better too. I figure we'll get everything back to normal just in time to start the next cycle :-)
A big congrats to Timmy who got promoted at karate today. He recently moved up to the Jr. class and now has to test for all his promotions. He also had a soccer game last night in which he scored a goal. I barely managed to get it on tape before the battery on my camcorder died. I felt bad for the kids having to run around in this heat but Coach Dan was prepared. He brought spray bottles filled with cold water and I would spray everyone down when they came in for a drink. Thankfully his last game is this Saturday!
They also had soccer awards on Tuesday night and all of the kids got a trophy. The kids had a ball this season and have really come along way in playing the game.
That's about it for now..... Thanks so much for checking in!
Friday June 22 - Well Murphy's Law has been in affect this week. I guess I shouldn't have said "6 weeks off" and "normal life" out loud. Lauren has been in the hospital since Tuesday with a systemic blood infection. She awoke that morning not looking too good and withn an hour had a fever of 103.5 and severe chills. I called the Valerie Center right away and they said "get in here now!" When we got there she looked a little better thanks to the tylenol she had had earlier. They immediately started her on IV fluids and two antibiotics and drew blood cultures. Within a half hour of being there she looked awful again with severe chills, temp starting to go up again and crying that her head and hips hurt. They knew she had a line infection and was septic. We gave her another dose of tylenol which settled her down while we waited for a room to be cleared on the floor.
By the time we got Lauren settled into a bed on the floor she was feeling a little better, still pale but at least talking to people and watching TV. We knew we would be in for few days for antibiotics and to wait for the blood cultures, which usually take at least 24 hours to grow. Well at 10 pm one of the residents came in to tell us that Lauren's culture had already grown (in less than 12 hours) and it was a gram negative bacteria (which can be really bad). They immediately started a third antibiotic and bumped her up to "stepdown". She was hooked up to a machine that continuously monitors heart rate, respiration, oxygen sats & blood pressure. They explained to me that the gram negative bacteria give off toxins and that's what makes a person so sick. When they kill off these bacteria with the antibiotic they can release a lot of these toxins at once and that could lower Lauren's blood pressure and send her into septic shock. They warned me that even though she looked good then, she could get worse before getting better.
But Lauren being the little fighter that she is just kept looking better and better. By the next morning she was begging to go to the playroom and was thoroughly amusing everyone. She has been fever free since Tuesday afternoon but we have to stay until we get negative cultures for at least 48 hours. Then we have to continue IV antibiotics for another 7-10 days. We had a negative culture on Wed but unfortunately Thursday's culture was positive. We won't know about today's culture til tomorrow.
Also Lauren's central line will most likely have to be pulled. They finally identified the bacteria today and she actually has two different gram negatives (as if one wasn't enough!) Not that these names will mean much to you but one is an Enterobacter (agglomerans) and the other Escherichia (E.) vuneris. The doctor said that these two are very rarely seen in a line infection (of course!) and are almost impossible to eradicate from the line with antibiotics. The antibiotics are working on the systemic infection but these little buggers love to hide in the nooks and crannies of plastic n the lines. We'll know by Monday if the broviac will be removed.
I came home today for a little R&R and Bill will be in with Lauren over the weekend. Timmy and I are heading down to Grandma and Pop Pop's house tomorrow for a family BBQ. We had planned this visit weeks ago and we were all looking so forward to it, especially Lauren (the food is always better at Pop Pops!) We were really hoping that Lauren would be out in time to go. Well... we'll just have to have another one when she's better!
I will be heading back to the hospital right from Bill's parents house on Sunday so I may not be able to update again til Lauren gets home as I don't have easy access to a computer while in the hospital.
Thankfully we caught this early and Lauren has responded well to the antibiotics. Hopefully we'll be home in a few more days.
Thanks for all the continued prayers!
Thursday June 28 - Yippee! We're home! Lauren got out of the hospital about 7:30 last night and was so happy to be going home. Her fever never came back and boy was she tired of being cooped up. She was bouncing off the walls! She looked so good that on Saturday we were able to disconnect the IV fluids so she could have more freedom. She was only "hooked up" three times a day for an hour each time to get her antibiotics. We finally got negative cultures over the weekend but even so we decided to have her central line removed. Bill & I didn't want to take the chance that the bacteria was still in the line and would start to grow again when the antibiotics were stopped. The doctors agreed and Lauren went under general anesthesia in the OR on Tuesday to have it removed.
Lauren was not too keen on the idea of taking her "tubies" out. We had mentioned it to her a few times so it wouldn't come as a surprise. She kept asking why. I told her that there was a very tiny yucky bug/germ in them and that if the "medicine" didn't get rid of it then we would have to take them out so she wouldn't get sick again. At first she got upset. Then one day she looked at her lines and turned to me and said "but mommy my "tubies" don't look yucky ....they look fine and I don't have a fever anymore so the medicine IS working." Then she would say "but I like my "tubies" I'll miss them." Some people may think this weird but you have to remember that Lauren was only 19 months old when she got the central line and has had it for almost 17 months, so unlike the older kids she doesn't remember what it's like NOT having "tubies".
By the time Tuesday came she had adjusted to the idea and was ok with it. She even asked the doctor, on the way to the operating room, if she could keep them and take them home with her.
Once her line was gone we no longer had a permanent IV access so they put a regular (peripheral) IV in her hand (which Lauren was not thrilled about) to continue the antibiotics. We couldn't go home with this IV and since I really didn't want to hang around the hospital for another week (no offense guys!) I asked for a PICC line to be put in. This is similiar to the old line in that it goes directly to the heart but it is a single line in the arm, much smaller and only temporary (2-3 months). So on Wednesday, Lauren was sedated in the PICU for the new line. Afterwards they told me that she would probably sleep for a few hours due to the fact they had to give her a whopping dose of sedative because she kept fighting them. But, true to form, Lauren was back in her room within 15 minutes of waking up, fighting the drugs and consuming large amounts of food!
So now that we had a more permanent line we were free to go. She's home on 2 antibiotics which she gets every 8 hours for the next week. She also started her 4th cycle of Accutane this past Saturday so we have another 10 days to go with that. We have to go to the Valerie Center next Thursday for another blood culture and counts then over to the eye doctor for a checkup. And next Friday we go back to the orthopedic to check her back. Then on Monday the 9th we head back to the city for round 5 of antibodies. Whew ..... is 6 weeks up already?? Where does the time go?
I have to say, being inpatient wasn't high on my list of things to do this month but it was really great to see everyone on the floor. A lot of them haven't seen Lauren since transplant in November and were amazed at how great she looks. Judy and Diane from the radiation dept both came up to see us. Thanks guys! I also had the chance to "catch up" with a lot of people and to meet some new (well new to me) families at the Valerie Center.
I hope everone has a safe and happy 4th of July!
Thanks for all the thoughts and prayers!!
