On Monday I noticed that Lauren wasn't using her right arm much (the arm with the new line) and that her bicep was swollen and very painful with a red line going up it. A trip to the Valerie Center the next day confirmed that she had developed phlebitis in that arm. It was not yet far enough up the arm to have to pull the line but it was close. They decided to treat the phlebitis and try to save the line but told me that if it progressed upward another inch it would have to be pulled immediately. So Lauren was started on Advil every 6 hours and we increased the heat compresses from 4 times a day to as often as possible. Within 24 hours there was a noticeable improvement and as of yesterday all the swelling is down and she'll even let us touch it. The phlebitis is still there (the vein feels like a thick cord) but at least it's being kept in check. We'll just have to keep watching it closely.
Lauren finished up her IV antibiotics on Wednesday so on Thursday we made another trip to the Valerie Center for a followup blood culture. Lauren slept through the whole visit. Then we went across the street for a checkup with the eye doctor. I told her that I thought Lauren's eyes were getting worse again, crossing more and more even though she has been excellent in wearing her glasses. Well she confirmed what I had thought and said her eyes are back to where they were before she had the eye surgery (which was exactly 1 year ago).
So it looks like Lauren will have to have another surgery but before we decide for sure the doctor wants to check her again when we get back from Sloan.
Today was another trip to Morristown, this time to the orthopedic for a checkup on Lauren's back. When we were there at the end of March the doctor noted that there were already some changes in her spine. We repeated the xrays today and were told that the scoliosis (side to side (lateral) curve) seems stable right now but the kyphosis (forward curve) has progressed a little. The doctor said that since Lauren looks so good clinically he doesn't want to use a brace yet. He wants to check her again in 4 months time and see where things are then. I talked to him about my concerns with Lauren's weak muscles (abdominal & legs) and that she was a little behind in her gross motor skills. He agreed that she could use a little help with this so he wants her to do PT twice a week for at least 12 weeks. Besides working on her abs and legs he wants her to do exercises to strengthen her spine in the hopes that it will help the kyphosis. He referred us to a physical therapist that specializes in pediatrics and Lauren will start with her when we finish with antibodies and scans at Sloan. Her evaluation & first session is scheduled for Aug 3rd.
On Sunday we'll be heading back to NYC to check in at the RMH. Lauren and I will head to the clinic bright & early Monday morning to start Round 5 of antibodies. Lauren is looking forward to the trip and can't wait to see her friends there. With any luck this could hopefully be our last round.
One last note... A big Thank you to all the patrons of Murphy's Bar, in Long Branch NJ, They set up a "curse" jar on the bar and anyone caught saying a "naughty" word had to put a quarter in the jar. Let me tell you, there must have been a lot of "naughty" words!! Thanks a bunch guys!
As always, Thanks for checking in on us and for all the continued prayers!
Saturday July 14 - Lauren and I are home for the weekend so I thought I'd get a quick update in.
Well we started the week with a minor setback. When we got to the city on Sunday and went to check in at the Ronald McDonald House we were told that they didn't have a room for us. Somehow they made a mistake and had us on the schedule for arriving the next Sunday and it being a weekend they couldn't call our social worker (reservations can only be made or changed by your social worker at the hospital) so there was nothing they could do for us. Even tho it was their mistake! Boy were we PO'd. We had to call the social worker on call to try and make other arrangements until our own social worker (Diane) could be reached on Monday. Thankfully we were able to get a room for the night at the Helmsley Medical Towers which is only a few blocks away. (Bill and Lauren had stayed here once before and the rooms are really nice but the cost is 10 times that of RMH!)
The next day Diane straightened out the problem and we were able to move back to RMH in the afternoon after Lauren finished her antibodies. I had 3 weeks worth of stuff to move, no car and a drugged little girl so two child life volunteers from the clinic helped me walk all the stuff over. Thanks guys!
Lauren is now halfway through her antibody round and had a pretty tough week pain wise. The last two days we had to give her an extra dose of pain med (dilaudid) to make her comfortable. But she's been doing great otherwise. Since she doesn't have to get the gm-csf infusion before the antibodies anymore our time in clinic each day is much less than before. Now we're back at RMH around noon (instead of 3 or 4) so Lauren awakes from the effects of the narcotics much sooner and gets to enjoy whatever is going on in the evening.
On Tuesday she learned how to square dance. Boy did she have a blast! She also serenaded everyone in the room with a few verses of Old MacDonald Had a Farm. On Wednesday they had a BBQ out on the terrace with crafts, lots of food and a fiddle band. Again, Lauren danced up a storm. Then on Thursday they had Christams in July. After a great Italian dinner, Santa came to visit all the kids. Each child was called up one at a time, got to sit on Santa's lap and was given a huge stocking full of stuff. Lauren wasn't shy at all. She jumped right up on his lap, hugged him and then asked him where Rudolph was!
It's really amazing all the stuff they do at RMH for these kids and how special they make them feel.
We'll be heading back to the city tomorrow and hopefully this week of treatment will be a little easier for Lauren. She'll be having some of her 3 month scans this week too. Bone scan on Tuesday and bone marrow aspirates/CT scan on Wednesday. The MiBG scan and VMA/HVA (urine) will be done the following week.
Oh, one other thing... Memorial Sloan Kettering has revamped their website and added a new part called Pediatric Cancer Care. A photo crew had been in the clinic in April taking all kinds of pictures for possible use on this new site. Well I just found out that there is a picture of me and Lauren on it! Check it out -
Click here MSKCC - Pediatric Cancer Care to go to the site. Once there click on "When a child has cancer".
As always.... Thanks for checking in on us and please say some extra prayers for clear scans!
Saturday, July 21 - Lauren finished up round 5 of antibodies yesterday and is very happy to be home. She had a much easier time this week and actually had no pain at all the last three days. Wishful thinking would be that she has developed a HAMA but it's definitely too early to know that yet. She won't get blood drawn for the HAMA test until Aug 6th. Lauren also had most of her three month scans this week - CT, bone scan and bone marrow biopsies and aspirates. I should have the results this week. The rest of the workup (MiBG scan and HVA/VMA (urine markers) will be done this week. We head back to RMH Monday night. Tuesday will be a quick visit to the clinic to drop off urine and get a radioactive isotope injection. Then on Wed she'll be sedated for the MiBG scan. If all goes well we'll be back home late Wed night.
Like last week, Lauren was able to enjoy more of the evening activities at RMH. This week they had a western BBQ/minature golf night, bingo (Lauren gets to help call the numbers), jewlery making (we must have 20 bead necklaces!) and a pizza party. We also took a looong walk to find a new Zainy Brainy toy store. Lauren picked out a stick horse and rode it all around the store saying "Giddyup" up and down the aisles. She wanted to ride it home but I convinced her that it was too long of a ride for the horse and he would get too tired. She reluctantly agreed to let it ride in the back of the stroller.
On Thursday, I had a visit from an old high school friend that I hadn't seen in almost 10 years! We had a great time catching up over a pizza lunch. Thanks Lenny..... You really brightened up my week! Unfortunately Lauren slept through the entire visit. It was actually really funny ..... just as we turned around from walking him to the subway, Lauren woke up and said "are we going to lunch with your friend?" I laughed and said 'honey we already went to lunch you just slept through it! She was upset at first but all was forgiven by the time we got to McDonalds for a Happy Meal.
All in all it was a fun week for us. We got to see and catch up with some old friends from previous rounds and also made some new friends. Lauren's roommate this round was a sweet little girl named Hannah, who just happens to be treated at the same hospital where Lauren's favorite doctor - Dr. Kristen, now works. Lauren was very excited when she found out that Hannah knew Dr Kristen too! The girls had a lot of fun together both in the clinic and back at RMH.
Well that's about it for now.
As always... Thanks for thinking about us and for including us in your prayers!
Friday July 27 - First things first....... scans are clear!! CT, marrow aspirates and biopsies, bone scan and VMA/HVA are all negative! They're still waiting on the MiBG results from Wed but they don't expect anything there so Lauren is still NED (no evidence of disease) She has been NED for just about a whole year now and we are thrilled!
Lauren had a good time in the city this trip. We didn't have to be in the hospital much and she didn't have to get a lot of "sleepy medicine" so she was able to run around and enjoy herself.. On Tuesday we didn't have to be in clinic til 1:30 so in the morning Lauren and I headed to the Central Park and Childrens Zoo. Of course we had to pick one of the hottest days to go! I think it was already 80 out at 10AM! Good thing it was only a 20 minute walk from RMH! Even with the heat we had a lot of fun. Lauren liked the penguins and the polar bears the best. We actually spent a lot of time in the penguin house....it was air conditioned! We stopped at the clinic on the way home from the zoo to get the isotope injection for the MiBG scan (it's given 24 hrs before the scan), then hit McDonalds for her daily Happy Meal. Once back at RMH we spent a lot of time in the nice cool playroom then went to a BBQ out on the terrace.
Wed morning we hung around the room packing and cleaning then went to clinic around noon. Lauren was such a trooper. She wasn't allowed to eat or drink anything all day til after her scan (which was at 2:00) because of the sedation but she never once complained. Even when they were having a pizza party at the clinic! They also had a talent show that day in which Lauren asked to participate. She told them she wanted to sing Old McDonald Had a Farm. She walked right up on stage, up to the mic, looked around and said "I want my mommy"! So I went up and held her while we all sang Old McDonald. LOL
Lauren went to sleep great for her scan. Usually she is so hard to sedate. They say that a lot of the neuroblastoma kids are due to all the sedation and narcotic meds that they get. Most of these kids are so young that it's hard for them to lie still for a 45 minute scan without being sedated. Anyway, she did great and after the scan was done (while she was still out of it) she got her first two vaccinations. Then..... we pulled her PICC line! She is now "tubie" free for the first time in almost 18 months! She was soooo happy. She told us all that she couldn't wait to go swimming and splash in the tub! She did ask once what would happen next time she got antibodies. But I told her that I would just put her "special cream" (emla - numbs the skin) on for the IV snd she wouldn't feel it. She thought about it and said...Oh, ok, good....just don't forget!
Last night Lauren had her long awaited bath and she had such fun splashing around. Then today she got to splash around in a pool. I wasn't sure at first how she would take to a pool because she hadn't been in one since she was about 14 months old. Well, It took all of about 2 minutes for her to get in and that was because I took that long putting the swimmies on her! She absolutely loved it and didn't want to get out! She was even telling me to let her go...."I can do it myself!" So now it looks like we have two little fish in the family. I can guess where we'll be spending most of the rest of the summer! Which is fine by me.... it's great that now she can do whatever she wants without all the restrictions she used to have. Another step towards getting a little more "normalcy" in our lives.
Not much going on in the next week. No doctor appointments until Friday when Lauren has her physical therapy evaluation. So I guess we'll have plenty of time for more water fun!
As Always....thanks everyone, for checking in on us and for all your prayers
Have a great week!
