The doctors at Sloan are a little concerned that Lauren is developing a reaction to the gm-csf, (which are the shots that boost her white blood cells that she gets before she start each round and also the 2 hr infusion she gets each day before the 3F8 infusion) This time when she got the shots it left a tiny purple bruise at each injection site for 2 weeks. Then when she got the IV dose during the round she started retaining fluid (she looked like a little beach ball) and breaking out in hives on her face (not to be confused with the hives she gets with the actual antibody infusion). Benadryl seemed to help. They said they would watch her next round and would stop the gm-csf if needed. They hope the reaction doesn't get any worse because they would like her to get at least 4 rounds with it. So we'll see what happens.
Lauren has been doing pretty well since they got home. She had a great time at her Dad's surprise birthday party on Saturday. She got to see a lot of family and friends that she hasn't seen in quite a while. It was great to watch her dancing and running around playing with the other kids. She was like a little Energizer Bunny..... kept going and going............
She has been having some pretty bad mood swings and some diarrhea as her body withdraws from all the narcotics she had over the past two weeks. She is still not eating real well (though she did for Grandma and I at the party! ). We hope that will pick up over this next week but it may not since she also started Accutane on Monday. She did vomit once that first day but Deb isn't sure if it was due to the meds or the entire bowl of raspberries she had consumed. If it continues we may have to lower the dosage.
Here is Lauren's upcoming schedule:
Monday 3/19 - Valerie Center for checkup and bloodwork (to check counts and
see how she's handling the Accutane (it can be hard on the liver)
Monday 3/26 - HAMA test drawn and sent to Sloan (results on Wed)
- Hearing test (still at risk for hearing loss for up to 3 years post chemo)
Friday 3/30 - eye dr appt (checkup on the strabissmus)
Monday 4/2 - off to Sloan for round 3 (as long as the HAMA is negative)
Lauren also needs to be followed by an orthopedic surgeon. Because of the surgery on her spine as well as the radiation to that area she is at a greater risk of developing scoliosis (curving of the spine) as she grows. If Deb can fit in an appt, she'll be seeing this doctor too before heading back for round 3 of antibodies.
Lauren's PHA test came back.... This is a test to see how close to normal her immune system is. The results were 42,000 and normal is 166,000 - 348000
so I guess Lauren's about 1/4 of the way there.
Loves and Hugs Lauren.....Aunt Nean will see you in the morning! Tell Timmy he better hide that box of Fruity Pebbles he doesn't think I know about!!! :o)
Update from Debbie
Sunday April 8, 2001 - Wow, has 4 weeks really passed since we've been in the hospital! As they say time flies when you're having fun. Before I get to the update stuff I need to post an overdue Thank You that should have been in the last update. A very big Thank You to Kerri (Bill's sister), Rich and the VFW post 2140 & 2226 for the fundraising dinner they had on Feb 24th. Like the first one they did this one was also a huge success. Kerri & Rich presented us with the cards, signed hearts and donations at Bill's birthday party in March. Thanks again guys.... we really appreciate all that you have done for us!!
ok...now for the update.
Lauren has definitely enjoyed being home these past four weeks. She's feeling good and finally eating enough to put on some weight. The food of the month is now plain tortillas, frozen mini pancakes and milk (by the gallon!). Her appetite finally picked up after finishing the cycle of Accutane about 12 days ago. Not sure if it was the Accutane or a stomach virus but she had
vomiting & diarrhea during the last week of the cycle. We'll have to wait and see if it happens during the next cycle too
We were supposed to be back at Sloan this past week for round 3 but we got bumped a week. So, we'll be heading to the Ronald McDonald House on Sunday (4/8) and round 3 will start on Monday and go til Friday 4/20. Lauren's scans are also due so we'll have to stay into the third week to get them done. They can't do them at the same time as the antibody treatments because of the 2 hr gm-csf infusion she gets before the antibodies each day. They're trying to set them up for Mon-Wed of the third week.
We had all of our doctor appointments last week and the results are.....
General checkup - Looks great, blood counts great
Hearing test - passed with flying colors Yeah!
Eye exam - Lauren's starting to cross her eyes again even with her glasses on so they want to check her again in 3 months instead of 6 to see if it gets any worse.
We saw an orthopedic sx for the first time too, to start following her back.
He said she has a slight curve in her spine as a result of all the surgery.
But it might not get any worse. So they too want to check her again in 3
months. If it does progress they may have to put her in a brace of some
sort.
All in all it's been a good month home. Lauren has had a lot of fun just doing normal 2 year old stuff. Like going to Grandma & Pop Pop's house for a fun weekend with Daddy & Timmy. She had a great time seeing everyone and told me that the best thing was that Melissa painted her nails & toes for her!
She's also been running around outside & playing on her swingset, going to the park with Sierra & Cheyenne and having playdates at their house, coming with me to watch Timmy at karate, helping daddy put up the Easter decorations and of course... going shopping. She is also so excited that Tim's soccer has just started up again. Now she gets to see her favorite soccer coach......Coach Dan!
Aunt Nean and Lauren got to play together this past Friday night while we were at Timmy's karate banquet. I'm not sure all that went on but I do know I heard ...makeup...please! as we were heading out the door.
Timmy is off from school next week for spring break so he and Bill will get to do some guy things together while the girls are away.
Thanks for checking in and we'll update again when we get home.
Saturday May 5 - Sorry everyone that it's been so long since the last update. We've been home for a full week and I'm just now getting caught up on things. We finished round 3 of antibodies on Friday April 20 but then Bill and Lauren were back at Sloan almost the whole next week for 3 month scans (bone scan, CT scan, bone marrow aspirates & Mibg scan). Thankfully everything has come back negative! Lauren is still NED (No Evidence of Disease)!
We did get home for Easter. We had Easter Saturday dinner at my mom's house. Bill took the kids fishing in the pond out back and Lauren caught the first fish. She was so excited. She wanted so bad to throw it back in that she tried to do it while it was still attached to the hook! I'll try to get a picture of it up this week. We had a really nice visit with Grandma, Grandpa, Aunt Nean & Uncle Dylan. Then we headed back to RMH on Easter Sunday.
All in all this round wasn't really too bad. Lauren really didn't want to be there at first and kept asking to go home. But then we got back into the routine and she was fine. She had about half & half good vs. pain days. We did hit one snag though and had to be admitted for one night. On the second day of the round Lauren spiked a fever and was extremely lethargic. So they drew blood cultures, admitted us and started IV antibiotics. She missed one day of the 3F8's but they said that was no problem. The fever lasted about 36 hours and then disappeared. Nothing ever grew on the cultures and she had no other symptoms so they're not really sure what the problem was. She did get another fever towards the end of the round but that one was due to a reaction and major hives on her face & neck from the gmcsf. One doctor talked about admitting us again but I refused and a second doc on the team backed me up.
I haven't told the docs yet but I think I figured out what the first fever was from. The day we came home, Timmy had a fever of 104 which lasted about 36 hours with no other symptoms. But then about 4 days later he got a major rash and was confirmed to have Fifth Disease (a parvovirus) which was going around his school like wildfire. A lot of kids never get the rash, just fever & lethargy. So I think this might be what Lauren had too. I'm also pretty sure this is what I had when I was sick in March. They say that it hits adults a lot worse than kids and adults don't get the rash.... just stiff, swollen & very painful joints. So I guess I started it in the house! LOL Thankfully everyone is healthy now.
Lauren is in the middle of her second cycle of Accutane right now and is doing pretty well with it. She has some dry cracked areas on her cheeks & lips but not as bad as with the last cycle. We have to be very careful with the sun when she is on this so the last few heatwave days have been hard. We pile on the sunscreen and try to keep her in when the sun is the strongest. She doesn't seem to do to well with the heat these days. It just zaps her energy and tires her out very quickly. Hopefully it won't be a blazing hot summer.
We should be home for another week before heading back to Sloan for Round 4. We have an appt. at the Valerie Center on Monday for a checkup & the HAMA test. As long as she is still negative we're due to start on 5/14 which means we head back to RMH on Mother's Day. There's a chance we'll be bumped an extra week again but I won't know for sure til next Wed when I get the HAMA results. I'll let y'all know as soon as I find out.
As always, Thanks for checking in on us and for keeping us in your thoughts and prayers.
Thursday May 10 - Well we found out late yesterday that Lauren is still HAMA negative. So we're due back at Sloan on Monday 5/14 to start round 4 of antibodies. We'll actually head to RMH on Sunday (Mother's Day). Lauren was not too pleased that we had to start up the gmcsf shots again last night but she's really being a trooper about it. She no longer wants the "magic" numbing cream beforehand so it's actually faster. (The cream had to be on for at least an hour before giving the injection). She's also down to her last day of Accutane for this cycle. She'll get a two week rest while doing antibodies then start cycle 3 when we get home.
The effects on her skin have gotten worse these past few days. And keeping her out of the sun all day is nearly impossible. So we just pile on the sunscreen. It's really funny...she knows she can't go out without lotion so she runs around yelling "I need sunscream, I need sunscream". The 2 week break should hopefully give her skin enough time to heal before we start again.
Lauren also had a checkup the Valerie Center on Monday. It had been 5 weeks since our last visit so it was nice to see everyone again. Lauren was a little upset when we first got there but then was running around like she owned the place. She even let Dr Kline examine her without yelling at him. We stopped down on the floor & got to see Gretchen & Edie (2 of our favorite nurses)& also visited with little Billy who was in having chemo. (Billy is 2 1/2 & has the same cancer as Lauren) Everyone said she looks great. Her counts were good and her weight is exactly the same as it was there last month. Tho I was sure she would have gained something with all the milk she is now drinking. I swear she's drinking a half a gallon a day! And this is a kid that up until the end of March hated milk! Her other favorites are still Tostitos, mini frozen pancakes, fortune cookies and of course McDonalds burgers (still without the bun). We'll see if this all changes after the next round.
That's pretty much it for now.....we'll see ya in 2 weeks!
As always, Thanks for keeping us in your thoughts and prayers!
Monday May 28 - Happy Memorial Day! We got home from the city late Friday and Lauren is looking great. She did really well this round even thought she had a lot of "pain" days. I think there were only 3 days out of the 10 that she slept through til the end of her infusion. But like I said, she did really well. She was much more awake in the evenings this time and we were able to paticipate in most of the activities at RMH each night. And since it rained so much the last week there Lauren has found a new favorite thing..... Puddle Jumping! I would take her out on the 7th floor terrace and let her stomp & splash through all the puddles she could find. Some people looked at me like I was nuts but I figured what the heck.... she deserves a little fun. Sure we had a lot of wet shoes (by the end I was letting her go out barefoot) and pants but hearing her giggle so much made it all worth it! She made me promise that next time we'll bring her "puddle jumping boots".
Speaking of next time....... we have a whole 6 weeks off this time (instead of the usual 3) before we have to go back again. Since she has passed the fourth round they now increase it to six weeks between rounds. And now she'll be doing two cycles of Accutane between each round. 2 weeks on then 2 off the 2 on again. She just started cycle three on Saturday. Also, since Lauren has completed 40 days (4 full rounds) of antibodies, if/when she gets a HAMA.... we are done... as in done with treatment!! (well, ok, she'll still have to finish her 6 cycles of Accutane but at least that's just pills at home LOL). But I'm not getting my hope up too high for a HAMA yet because I know a lot of kids that have had 8 or 9 rounds and are still negative. But then again if anyone can do it it'll be Lauren!
Assuming she's still negative, Round 5 is scheduled for July 9-20 and by that time she'll be due for her 3 month scans again too so we'll have to stay into the next week as well. One good thing though- starting with this next round Lauren no longer has to get gmcsf. That means no more shots the 5 days prior to the round (& the weekend in between) and no more 2 hour infusion beforehand each day. So instead of being in the clinic for at least 6 hours a day we'll only have to be there about 3.
More good news.... the results of Lauren's last PHA (immune system) test are much higher than the first one that was run in Feb. They were almost up to the low normal range (85% up from 25% in Feb). We ran another one last Monday but I won't have the results for another week or two. The doctors are pretty sure though that she's now in the normal range. And if that's the case then now Lauren has to start getting revaccinated. They pulled virus titers too last week to see if she still has any titers to the vaccines she got before treatment but even if she does she still has to get them all again. I'm sure that's gonna go over big! Ha!
We're definitely looking forward to these next six weeks off and have a lot of "stuff" on the calender. One of the biggest things Lauren is looking forward to is her birthday party! She turns 3 on Sunday, June 10th and that's when her party will be. We're keeping it on the small side, not too many kids, but I'm sure she'll have a blast.. It's going to be so much fun watching her run around doing normal "kid" stuff!
Well that's about it for now......
As always, Thanks for checking in and for all your thoughts and prayers!
